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I designed this piece to reflect my own experiences around reproduction and experiences common among those with uteruses or a female presenting identity. I wanted to include as quotes, cases, and other factors influencing how and when someone chooses to reproduce.

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This image shows various models of IUDs including the infamous Dalkon Sheild. Early IUDs were tested on women of minority groups and often in developing countries. The complications of the early IUDs, including the Dalkon Sheild, often including perforation, infection, bleeding and sometimes becoming embedded in the uterine tissue which then had to be surgically removed (Intrauterine Device (IUD) - Dittrick Medical History Center, n.d.). The testing of these IUDs in underfunded countries lead to thousands of women becoming infertile or enduring extreme complications with little to no healthcare interventions.

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This piece was based on Tracey Emin's own struggle with mental health. She spent four days in bed struggling with her own depression, she shares her vulnerability to spread awareness. This piece spoke to me as showing human resilience, the artist described that while setting up the art in various places she feels as if she's looking into a time capsule of her own depression but almost separate from it as her life is so incredibly different now (The Enduring Connection Between Art and Mental Health | Art UK, n.d.).

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Lady Gaga addresses rumours about her gender identity *profanity*

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Lady Gaga addresses rumours about her gender identity *profanity*

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For a long time Lady Gaga has been outspoken on her support of LGBTQ+ individuals. During an interview, she was questioned about her identity and gave the above response. I chose to enter this clip for a few reasons, a moment of challenge against societal gender norms, establishing that gender or sex are only the business of the individual and because this was said by someone with such a large platform. Many LGBTQ+ people are asked invasive questions about their identity and body, Lady Gaga was truly one of the first people on a large stage to basically say "why does it matter?".

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I chose this song because it has always resonated with me. The song has many concepts but it is generally about the experience of loving a friend with an addiction and desperately trying to help them while they struggle between choosing between overcoming addiction or letting it overcome them (Arochas, 2024). The song is recognizable, and its not hard to hear the messages about struggles with mental health and the toll that addiction takes.

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The Fray - How to Save a Life (Official Video)

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This piece was first introduced to me by a dear friend of mine from my first diploma. She was putting together an art gallery mock-up and I was asking her questions and she taught me about this piece. The artist's name is Felix Gonzalez-Torres and he created this piece to reflect his experience of watching his partner die of AIDS. The candy weighs 175 lbs and those who observe the piece are meant to take a piece of candy and over time, this mirrors the feeling of loss that Gonzalez-Torres endured while caring for his partner and the way in which he watched his partner wither away due to weight loss associated with AIDS. I have always remembered this piece and it reminds me every day of the discrimination of LGBTQ+ people during the AIDS crisis and continues today. This piece was what began my interest in sexual health, LGTBQ+ rights, and health as well as my vigilance for how we can stop discrimination for LGTBQ+ individuals, especially in healthcare settings.

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Art Celebrates Breastfeeding Mothers and Challenges False Idols

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Art Celebrates Breastfeeding Mothers and Challenges False Idols

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This painting by Jody Parmann seeks to challenge ideas of breastfeeding. The painting is not a religious one, using imagery of Mary purely because of her recognizability as a mother. Parmann explains that the painting is meant to remind people there was a time when ideas of decency or sexualization didn't affect the context of breastfeeding. The breast is meant for nutrition and breastfeeding is a natural act between mother and child. The painting also acts as a beacon of safety, Parmann has a cafe in which this painting is displayed in an effort to communicate with mothers that the space is safe and they are welcome to breastfeed. I think this is so important as many mothers feel they must hide their breastfeeding, often because of how those around them react but also because deeply engrained ideas that it is indecent or inappropriate to feed a child publically. These ideas are unfortunately all too common but Parmann made a piece to challenge these patriarchal ideas and create a safe and welcoming space for breastfeeding.

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The artist who created this used Haudenosaunee beadwork to show connections between education, healthcare and the fluidity of gender and sexuality. The artist chose to use the colours of the pride flag. The technique of blending the bead colours into each other represents that as more is learned about gender and sexuality, the more it is seen that these concepts are fluid. This artwork is an excellent representation of how culture, mental health, gender and sexuality all intersect. (The Healing Power of Art: Indigenous Artists Bring to Life Indigenous Healthcare Education Resource, n.d.)

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This painting represents the delicate balance of systems. The artists wanted to represent that Indigenous health is connected to every system, when one system or aspect is out of balance then all are affected. Lindsay Brant wants to stress the importance that physical aspects are not the only things to treat, it is important to address mind, spirit and heart (The Healing Power of Art: Indigenous Artists Bring to Life Indigenous Healthcare Education Resource, n.d.). I wanted to include this piece because it echoes, things we have learned especially the importance of holistic care but it also emphasizes the importance of Indigenous holistic healthcare.

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Decolonizing health in Canada: A Manitoba first nation perspective

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Decolonizing health in Canada: A Manitoba first nation perspective

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I chose this literature because of its respect for those who participated but also for their thorough look into decolonizing healthcare. Across 8 First Nations and 183 interviews they discovered that there were 4 prevalent themes, "1) First Nation control of healthcare; 2) traditional medicine and healing activities; 3) full and meaningful community participation; and 4) cleaning up the impacts of colonization" (Eni et al., 2021). Much of what they found are sentiments which I have heard from my Indigenous friends when discussing the topic as well as guest lectures about Indigenous health in other courses. This research and the learnings I've received from friends align very closely and have made me more aware of practicing nursing in a way that creates safe spaces and trust between the Indigenous population I will care for and myself as a clinician.

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Research

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International Journal for Equity in Health 20, Article number: 206 (2021) Cite this article

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Abstract

Introduction & Background

Global persistence of health inequities for Indigenous peoples is evident in ongoing discrepancies in health and standards of living. International literature suggests the key to transformation lies in Indigenous efforts to control Indigenous health and healthcare. Previous authors have focused upon participation, structural transformation, and culturally appropriate healthcare recognized as a political right as fundamental tenets of Indigenous control. Contextualizing Indigenous health and wellness falls within a growing discussion on decolonization - a resituating of expertise that privileges Indigenous voice and interests.

Methods

The study is a qualitative, grounded theory analysis, which is a constructivist approach to social research allowing for generation of theory in praxis, through interactions and conversations between researchers and participants. One hundred eighty-three interviews with additional focus groups were held between 2013-15 in eight Manitoba First Nation communities representing different models of health delivery, geographies, accessibilities, and Indigenous language groups. Community research assistants and respected Elders participated in data collection, analysis and interpretation. Line-by-line coding and constant comparative method led to the discovery of converging themes.

Findings

Ultimately four main themes arose: 1) First Nation control of healthcare; 2) traditional medicine and healing activities; 3) full and meaningful community participation; and 4) cleaning up impacts of colonization. Joint analyses and interpretation of findings revealed substantial evidence that communities were looking profoundly into problems of improperly delivered services and health inequities. Issues were consistent with those highlighted by international commissions on reconciliation, health, Indigenous rights and liberties. To those documents, these findings add ground upon which to build the transformative agenda.

Results & Discussion

Communities discussed the need for creation of protocols, constitution and laws to ensure growth of a decolonizing agenda. Inclusive to the concept are holistic, preventative, traditional health perspectives, and Indigenous languages. Colonization impacts were of critical concern and in need of undoing. Sharing of social and political efforts is seen as pivotal to change and includes all members of communities.

Introduction & Background

Global persistence of health inequities for Indigenous peoples is evident in higher rates of illness and disease, food insecurity, living standards and mental health [ 1, 3, 4, 8, 13, 14, 16, 19, 33, 34]. International literature on health inequities suggests the key to successful outcomes is held within communities who have taken control over their health, health services and systems [ 12, 36]. Indigenous participation, engagement in health programming, policy development [ 37], structural transformation [ 38], and culturally appropriate healthcare, recognized as a political right [ 35] are specific tenets within those discourses of control.

Without control of healthcare there is a lack of clarity regarding unique perspectives, interests, histories, and contexts that Indigenous people bring to their healthcare experiences and the ways by which they inform optimal care provision for themselves and their families [ 7, 25, 32, 39, 40]. Also apparent is a growing focus on the problems of ongoing indigenous-specific racism, discrimination, the history of institutionalized healthcare and a lack of understanding of the unique life experiences of Indigenous peoples [ 32, 41].

Contextualizing Indigenous health and wellness falls within a growing broad discussion on decolonization of health and healthcare. In Canada and internationally, research and policy has focused on transferring control of healthcare to Indigenous governance [ 28, 29]. In Australia, Sherwood and Edwards recommended a necessary transformational shift in order to improve Indigenous health. Decolonization of healthcare systems, these authors emphasized, is necessary for this shift to occur. Decolonization includes resituating expertise such that Indigenous peoples become experts of their own health experiences, voicing and acting upon health initiatives. Furthermore, a systemic shift away from the ongoing dominant linear approach to health is needed [ 28]. Current knowledge from Indigenous communities highlights views on health and disease that are more inclusive and holistic, acknowledging the full spectrum of influences affecting wellness across the life course, aligning with traditional perspectives, e.g., access to and involvement in the production of healthy foods, physical activity, spiritual expression, and community empowerment [ 31] and among multiple levels of human existence, i.e., social, political and economic [ 11].

Our focus on decolonization stemmed from community discussions on underlying issues of healthcare provision and transformation efforts in on-reserve communities with effectively developed community-based primary healthcare models. First Nation active involvement and leadership in the research program shed light on elements of healthcare provision that constitute First Nation governance. Within effectively developed, community-based healthcare models was ample consideration to community-informed direction and interests, social determinants of health, holistic programming, traditional medicine, and jurisdictional bridging. By their very participation and involvement, solutions to complex and persistent issues seemed straightforwardly solvable.

This paper focuses on research of the Innovation Supporting Transformation in Community-Based Research Project (iPHIT) to learn from First Nations that have developed effective community-based primary healthcare models. It emphasizes data collected from interviews and focus groups pertaining to decolonization as fundamental to transformation, and ultimately to effective healthcare provision. Within decolonization, community representatives spoke on issues of self-governance, traditional medicine, holistic human and ecological wellbeing, full community participation and inter-governmental, inter-population collaboration. The beauty and richness of the research emanates from its methodology - from its reconsideration of expertise regarding the requirements of primary healthcare that is away from providers and institutions to the users of care.

Defining decolonization in context

Decolonization addresses the multiple facets of disconnect between healthcare and Indigenous health outcomes, and the root of perpetual inequity itself. It is a process of reclamation of political, cultural, economic and social self-determination, including the re-development of positive individual, familial, community and nation level identities. Decolonization draws on colonial legacies, drawing on the knowledges and practices of pre-colonial, "traditional" times [ 17, 20]. These efforts require active involvement of Indigenous as well as non-Indigenous peoples (Mundel & Chapman). Decolonization has a revolutionary potential that requires the dismantling of colonialism as the dominant model upon which Canadian society [ 42], and healthcare provision, more specifically, operate.

Methodology

Background

This article is one of a program of research entitled 'Innovation in Community-Based Primary Health Care (CBPHC) Supporting Transformation in the Health of First Nation and Rural/Remote Communities in Manitoba, Canada' (iPHIT). The study was a 5-year research collaboration involving researchers from the University of Manitoba, 8 Manitoba First Nation communities, and the First Nations Health and Social Secretariat of Manitoba (FNHSSM), also recognized by its traditional name Nanaadawewigamig, which means "A Healing Place" in the Anishinaabe language. The Assembly of Manitoba Chiefs, Chiefs-in-Assembly, a political organization representing 63 Manitoba First Nations established the FNHSSM in 2013. The goal of FNHSSM is to create a unified health system with First Nations across the province through research, policy analysis, and advocacy. FNHSSM is also home to the Manitoba First Nations Health Information Research Governance Committee (MFN HIRGC), an ethical review body for all research involving First Nation peoples in Manitoba. MFN HIRGC reviews and approves research proposals to ensure that all research involving First Nation peoples meets 4 stipulated guiding principles: 1) free, prior, and informed consent at individual and collective levels; 2) First Nations OCAP principles, establishing First Nation ownership, control, access, and possession of data; 3) respect for First Nation ethical standards; and 4) benefit of the research to First Nations. These principles represent the essence of First Nation self-determination and governance in Manitoba [ 24].

The iPHIT program was one of 12 national teams funded via the Canadian Institutes of Health Research (CIHR) under the Community-Based Primary Health Care Initiative. Multiple challenges regarding provision of healthcare in First Nation communities, with a serious requirement for transformation in community-based primary healthcare was previously noted [ 18]. Contributing to the challenges for healthcare provision in the communities are small size of the communities, geographical isolation, and multiple jurisdictional operation of healthcare services and funding agencies: federal, provincial, regional health authorities, private for-profit organizations, and self-governing First Nation communities [ 24]. Further compounding delivery of healthcare is the multijurisdictional system for funding and delivery of community-based primary healthcare services, especially when the jurisdictions have not clearly defined each of their specific responsibilities, nor have they attended to colonization or its impacts [ 18, 24]. A growing evidence-base reveals that those First Nation communities who exercise control of their own healthcare appear to better meet the health needs of their community members. To further investigate this phenomenon, the iPHIT program focused on the experiences and strengths of community-based primary healthcare in First Nation communities, focusing on communities who have already begun their own healthcare transformation processes, utilizing traditional values within community-based and population health promotion lenses. Further information on studies of the iPHIT program is published [ 15, 24, 41, 43, 44, 45, 46].

Partnership, establishment of goals and direction

The iPHIT program, developed in partnership between FNHSSM and the University of Manitoba, built upon engagement and the capacities of the First Nations with the following overall goals in mind: 1) to describe community-based primary healthcare provision in First Nation communities by focusing on their strengths, key factors and innovations in healthcare to maintain wellness of community members; 2) to explore First Nation perspectives regarding why mainstream approaches to health may be failing; 3) to compare governance models, community engagement and delivery processes in and between the communities; and 4) to build collaborative relationships with communities and decision-makers in support of community-based primary healthcare innovation implementation to improve overall wellness of First Nations (see also [ 24]). These questions guided the qualitative study from which multiple articles have already and are in the process of being published [ 15, 24, 41, 43, 44, 46]. For the iPHIT team, the process of collaborative and respectful engagement was pivotal for implementation of a decolonizing methodology.

Analytic strategy

We followed the general theoretical assumptions of grounded theory (GT) as described by Charmaz and others in her footsteps [ 5, 6]. GT is a constructivist approach to social research that allows for generation of theory in praxis, through interactions and conversations between researchers and research participants [ 30]. The theoretical approach advocates use of sensitizing concepts, which Charmaz defines as background notions that inform the research problem and provide the lenses through which we see, organize and understand experience. Sensitizing concepts become rooted within our conceptualizations of what is and how things ought to be in the world through ideological constructions and relative interpretations of reality. Though they may deepen perceptions, "they provide starting points for building analysis, not ending points for evading it." In doing the work of GT, we use sensitizing concepts only as points for departure from which to study the data (2003: 259). The principles of GT provide a conceptual grounding while, at the same time, remain open to emergent themes [ 26].

The sensitizing concepts can be used further, to develop social constructs that are useful to studies in other social settings [ 2]. The constructs were derived from the perspectives of the research participants, from their language and expression, and that 'sensitized' the researchers to possible lines of inquiry [ 10]. Social constructs within Indigenous and decolonized methodologies influenced the starting point for our inquiry and analysis. Though we committed to adhering to GT methodology, that is to cast judgement and preconceived notions aside, we can only do so to a certain conscious extent beyond which we become blinded by our biases. All of the researchers went into this study perceiving that colonization continues to influence inequities in health and that racism exists and affects Indigenous peoples at every level of healthcare.

Linking back, the reviewed literature and previous studies by the research team indicated that the basic theoretical argument was that decolonization was an essential step to health equity for Indigenous peoples that included concepts such as taking back control of health, reclaiming and reviving health, and community-based participation. We assumed these concepts contained the theoretical notions that would set up the context for the overall research program. Although the goal for the research was to induce theory from the data, we are all to some extent influenced by our immersion in the politics of Indigenous health.

The sensitizing concepts emerged from the First Nations' desire to transform primary healthcare in their communities by taking back control over their healthcare in order to improve accessibility, relevance and overall health and wellness. In initial discussions about development of the iPHIT research program, community participants addressed concepts pertaining to a necessary transformation, which included self-determination and autonomy, consensus and active participation in healthcare design and delivery, and well as addressing key issues, such as racism and colonial imposition. These sensitizing concepts informed the interview and focus group question guides.

First nation collection of first nation data

Discussions about the research program began with a focus group meeting involving community leaders, health representatives and community members. As well, a regional conference was held, which allowed each participating community to share developments of their primary healthcare models. Each community identified a local research assistant (LRA) to serve as lead researcher for their own community. LRA's attended a research assistant training program and were ultimately responsible for sharing information about the study, recruitment, planning interviews and focus groups, data collection, co- analysis and interpretation, validation, and dissemination of findings and results.

Participant recruitment

Eight of Manitoba's 63 First Nation communities were invited to participate in the study. The communities were chosen purposefully, representing different models of health service delivery and 4 of the 5 First Nation languages in the province: Ojibway, Cree, Dene, and Dakota. The communities are geographically dispersed throughout Manitoba, with four each in the north and south. Community sizes range from small (a few hundred residents) to large (a few thousand residents). Two communities are isolated, accessible only via fly-in or winter ice roads. Two are semi-isolated, accessible by road but are far away from city centres. Four communities are rural with all-season road access. The four northern communities have nursing stations and the southern communities have health centres. All receive federal funding for healthcare. All came into the study with unique and innovative perspectives on community-based primary healthcare.

Within each community, LRAs utilized a snowball approach to recruitment of participants for interviews and focus groups. LRAs approached individuals they thought would have interest and insights into healthcare system experiences. One person spoke to another in the community about their involvement in the study and soon approximately 10 from the smaller communities, 20-30 from medium sized, and 50 from the larger communities were interviewed. Focus group discussions began as LRAs and researchers began to look into, discuss and analyze the data. As such, sensitizing concepts began to emerge and to shape conversations about the data. The focus groups helped to keep a momentum and conversation in communities about the research.

Interviews and focus groups

A total 183 interviews were held between 2013 and 2014. Community focus group discussions were held in 2014 to 2015. An interview guide developed in discussions between LRAs and the researchers, following the initial regional meetings, was used. The interview guide included open-ended questions with probes to encourage in-depth responses. Interviews and focus groups were in confidential spaces following individual participant comfort, such as at their homes, in the community health centres, or outside. Interviews lasted 90-120 minutes in length. Focus groups were 2-2.5 hours each. In each community, LRAs guided the discussions. Data collected from the interviews helped shape the focus group discussions. Eight to 15 individuals participated in each of the focus groups.

Participants ranged in ages, including young and older adults. There were equal numbers of men and women participants. Health directors and other healthcare providers from the communities were also participants. Although socioeconomic demographics were not recorded, participants represented lower to middle income brackets, a spectrum of educational level, from no secondary to college or university and graduate education. Elders brought a historical and traditional wisdom with them to the discussions.

Interview questions were organized into several categories regarding health needs, interests, service availability, accessibility, and more fundamental aspects of health and delivery of healthcare programming for First Nations, i.e., philosophy, history of colonization and self-government. Questions were included pertaining to personal and familial experiences in the different levels of healthcare, from community to tertiary or emergency care, and on biomedical as well as traditional knowledge and resources. Interconnections between jurisdictions, ecologies and areas of expertise were also brought into the discussions. Participants were seen as experts of their health experiences and were invited to share their wisdom in order to add substance to a transformative agenda, which it was hoped, would encourage vast improvement in self-governance, healthcare, and ultimately health of First Nations.

Analysis

All discussions within each community were audio-recorded and transcribed verbatim. In total, 400 pages of transcribed data were collected. Data was collected until saturation was reached. Meaning that through conversations and reviews of the data between LRAs and researchers, we had come to realize that information is becoming repetitive and no new information is being said. Once the data from all of the communities was collected, files were imported into Nvivo 10 software. . Excel was also used to assist in organizing observations from the data and to record the emergent themes. Transcripts were rechecked for accuracy against the audio-recordings.

Analyses included line-by-line coding and constant comparative method by which newly collected data is compared to former existing data in order to derive new codes, themes, and conceptual focal points. We looked for converging themes by community and then question by question. As we looked across communities, ideas and themes started to emerge. Patterns and interrelationships began to emerge. Codes were grouped into the following 4 themes: (1) First Nation control of healthcare; (2) traditional medicine and healing activities; (3) full and meaningful community participation; and (4 cleaning up impacts of colonization.

To perform a GT analysis in collective, we set up levels of analysis that began with community level validation or rechecking of the data, having the LRAs check in with participants to ensure accuracy of interview and focus group transcripts, and then later, checking with the participants to verify interpretation of the data. LRAs and researchers compared data sets, allowing common themes to emerge. Weekly meetings were held until 2017, led by one or two of the researchers (GKA and RE). Ongoing discussions allowed for a growing intimacy with the data, bringing themes to life and revealing a cohesive story of decolonization of health in the region. In 2018, a regional conference was held - bringing together and cohesively validating the research.

Trustworthiness of qualitative data is a standard concept used in qualitative research that is in contrast to conventional, positivistic criteria for external and internal reliability, validity and objectivity [ 2]. At community and regional levels, we employed trustworthiness techniques including: member checking, negative case analysis and thick description. Ultimately, a plausible a coherent explanation of issues pertaining to the topic emerged. Validation was achieved by presenting the results back to participants and the communities in community and regional workshops.

Ethical overview

Ethics approvals were sought and obtained from the University of Manitoba Research Ethics Board and from the Health Information Research Governance Committee (HIRGC), which is supported by the FNHSSM and is responsible for ethics reviews of all research proposals involving First Nations. Consent to participate was communicated through Band Council Resolutions made by each participating community, after meeting by project team members. The research adhered to the First Nation principles of ownership, control, access and possession of data (OCAP), which gave the communities decision-making authority regarding the details of information collection, utilization, and management [ 9].

Findings

Joint analyses and interpretation of the findings between researchers and First Nation people revealed substantial evidence that the communities were looking profoundly into the problems of poorly delivered healthcare services and health inequities. Issues brought to the fore were consistent with those highlighted by national and international commissions regarding reconciliation, health and wellbeing, Indigenous rights and liberties. What the community members generated through the interviews could be described aptly as substance to conceptual images conceived in central discursive circles. Essentially, we were all on the same page regarding it being high time colonialism and all it entails be brought to its head. However, the work that the communities were doing was providing an actual ground upon which to build a decolonizing, and therefore, transformative agenda. A culmination of work that can be described as dissecting decolonizing into pieces of not only coming out of a colonized mindset but re-entering into and revival of traditions, that included values, aspirations, and ways of doing health work that were outside of what has for over a century been shaped by colonial and, inside of that, biomedical power and control.

First nation control of healthcare

The first theme involves a realization that someone must be controlling what gets done in healthcare, including what gets prioritized, attended to, and ignored. Community members believed it was necessary to inquire about one's roles and responsibilities in order to create change. If one is not actively involved in decision-making about health matters that involve self and family, it is important to ask how this has come to be so or, perhaps, where that authority has gone lost. Interviewees across the communities agreed that control over such matters was taken from them by the Canadian governments. Consequently, they agreed in the necessity of resuming that control.

First Nation control and ownership would provide better access and would have the biggest effect on community health (A027).

Government has just conditioned us too much as Aboriginal people... They want to control us, and they want to stop where we are (wanting to move forward). Now we need to start empowering our people with knowledge and power and give back to take ownership of their communities, their health (GFG004-4).

What we need is less interference from government. Like right now, we are simply agents of the federal government. We administer their programs. We need access to resources which we can control and be accountable for, but control as we see fit (C008).

We need to have more awareness and more participation from individuals themselves, patients themselves. I believe they need to be more accountable for their own health (C016).

Self-governance begins with the family. The healthy part is to have vision by the community. We want the community to be healthy and it has to start from the self and then family and then community - just having the opportunity to make decisions and for communities to create their own guides for wellness (D005).

We need to get over what was imposed on us, those laws. One way... is creating our own constitution, creating our own laws. The Province of Manitoba and the government of Canada have to ensure, the economic capabilities of First Nations are supported, we need room to grow. The best way of doing that is by giving First Nation people opportunity to govern (D014).

First Nation models of health and wellbeing were holistic, including multiple domains of human development - physical, emotional, mental/cognitive and spiritual, as opposed to biomedicine's focus on the anatomical/physiological body. Further, healthcare included attention to how individuals live within their multiple ecologies, including what they eat, how they hunt, gather, and prepare their foods. Paying attention to prevention and health promotion strategies would go a further way than medical surgeries in resolving chronic disease epidemics.

Prevention! We are so focused on intervention right now, it's tough to turn to prevention, but we're taking steps in the right direction and if we can just front load our prevention models, the better it will be because that means we're doing everything we can to provide tools and skills to emerge to address those health issues before they become life threatening (D014).

Decolonizing the mind and the way the mind is interpreted, to participant interviewees, meant having thoughts and behaviours understood and respected from within a perspective that acknowledges the values and meaningful existence, what it means to be a First Nation person.

We need more psychiatry, but psychiatry based in our society. They come in and they don't understand our society, the way the society is (A007).

To decolonize requires an emphasis by communities to develop local expertise, working within communities, and according to traditional methods of health provision and understandings about the human condition.

We would have our own band members as physicians, which we might be close to having in the next couple of years. A lot of people in the health centre are our own band members, which is fantastic. A lot of First Nations communities don't have that yet (D014).

Quality healthcare is to have a good nursing station with all of the programs that are needed, NNADAP, mental health, nurses, medications, having all of those services here, all complete... A lot of lives can be saved just by keeping people here instead of sending them away so much (C011).

To train people better, work together with the community in our way and I think you'd have something substantial. I think now the people lack capacity (C011)

Permanence is essential, permanent... not temporary nurses... (C011).

Decolonizing spaces as well as work patterns were aspects of taking back control of health, as the following comments suggest.

The (community health representatives) need to get out of the offices, go door-to-door and see about the people in their homes, home visits, taking healthcare to the people and embracing health as a community (A007).

We're all scattered. We're not in one building or space as health workers. The nursing station is over there, social services is over here, and the other health workers are in a different area too. Sometimes no one knows what's going on (A005).

Traditional medicine

Communities saw colonization as a system of beliefs and practices imposed upon them, at the same time devaluing, ridiculing and forbidding traditions. Biomedicine halted development of First Nation medicines and healing philosophies. Now, the participant interviewees said, it was time to bring these knowledges back to the forefront of healthcare.

We would have traditional medicines brought back at the nursing stations for people to use. Our people are losing their limbs from diabetes and this isn't supposed to happen. I have that medicine for that so that won't happen to them. They won't have to lose their limbs (C012).

The main thing, the fear of the traditions has to be erased (A005).

Too many people now don't believe in our culture. They don't even believe in traditional values anymore. There's been a conflict, I guess, between white society and our own culture. There's just a lot of people have been brainwashed into thinking that culture is bad. You don't want to see a medicine man because generally, people think it's bad to go to one. And when somebody does go, they think they're practicing black magic or something like that. So, people tend to stay away from something like that (A007).

We have to re-educate our people on our own traditional medicines. We have a lot of learn and to differentiate, which herbs to use for spirituality and for physical health and so on. Educating to the purpose of the benefits of traditional uses of medicines is important. A lot of these chemically produced medicines have a lot of side effects. We need to get the people that have knowledge of these traditional medicines to explain the benefits of the traditional medicine, he herbs, and so on, bringing down the disillusionment that the community may have of using such traditional medicines (C005).

Revival of First Nation traditional knowledge would involve collaboration between the communities.

We can have a guide, a guide that would be for the community or for all the nations. If we're going to have our own guide, I guess to have some understanding, there's only certain things that are growing or could be grown in this community. In other communities there's only things that can be grown there. So, a guide would be a good thing to begin with. Like, we're got access to this, this is what we can grow and that is how you can use it, stuff like that. Because you have a lot of Manitoban communities, they do come pick sweet grass here, even from Saskatchewan, Alberta, Ontario, and British Columbia (the other provinces). They actually travel all that way to come and pick the medicines (D005).

Elders in each of the communities are thought to hold pertinent knowledge about traditional health.

It's more than the medicine men or medicine people involved in spirituality or have knowledge of such medicines. It's our Elders have a working knowledge of these medicines but they are not being utilized so we need to promote education, give them a place to share, in a working group, groups together that are interested in medicines and further our understanding, utilize what we have and study (C005).

Reconnecting after colonization was seen as pivotal to reclaiming health and healthcare. Traditional medicine and healing activities presupposed human-ecological interconnection. Importantly, what was interrupted with by the colonial regime was still accessible to the people, it may be hidden, in need of rediscovery, but discoverable, ready to be revitalized, nonetheless.

My dad was torn apart from his land and traditions. When I came back here, I was filled by that, all of the traditions and family that I missed out on. I never wanted to leave, the sense of community, the sense of the land and the people. When I do leave, even for a day, I get lonely, I get physically sick. We're safe here and you feel it, you're at home, on the land, something with the land, a bond, something (A007).

Our medicine people are coming back strong. The western doctors, they did so much harm than good (D012).

Full and meaningful community participation

Participant interviewees highlighted the fundamental importance of full participation in community development matters. Everyone had a voice. Personal and unique experiences of each gender and age group were vital to the creation of the type of healthcare services that would attend to the needs of the people. This type of participation is inherent in a First Nation conception of self-determination.

It's an integrated system we need that delivers services based on the health needs of the community (A027).

Most of our problems are about social issues. People are hurting, suicidal, heart-broken parents, these need to be understood and addressed, people need a place to just be heard and to be (A029).

We need to listen to the kids, our youth, because they are the ones that are going to take over this health centre one day. If these kids get healthier and more cultural that will be such a positive thing in the community (B005).

Open dialogue, I'm looking at this question from our oral tradition, which is more or less for me, open dialogue. Get the feedback from the people, the ones that are receiving the healthcare and what they think can be improved (C005).

People get stuck and it's only one person making all the decisions, it's got to be everybody, the whole community to say, "Let's get on board, let's help one another, support one another and make those changes as a community" (F006).

The vision should be created in consultation with community. So many times, the community is left out (F1).

With the older people that are out there now, I would want... the youth to do that... go and visit the Elders... Visit them, learn something from them while they're still here... We need to get their input and learn. We need to get back some of that what the Elders had in how they grew up and how these youth have grown up that which are two different things all together! Learn from each other because some of these older people, even a lot of young people don't know medical things... It is time consuming, but you can learn and teach in discussions (C010).

Cleaning up impacts of colonization

Whether or not participant interviewees focused on a need for more biomedical intervention brought closer to the communities, or even, into communities, or for improved health and wellness via holistic, health promotion and preventative strategies, one thing was agreed upon - colonization has reeked havoc on individual, family and community life, so much so that all facets of life and living must be attended to in order to revive health. Healthcare in First Nation communities would have to delve into the SDH, issues of self-governance, and human-ecological interactions - across the life span. The multiple perspectives are evident in the following comments.

Our population has grown in the last few years. This place needs a hospital, should have had a hospital years ago (A002).

More resources instead of having to go out of the community for care, such as x-rays (A008).

We have different doctors coming and going but we need to have a permanent doctor stationed here (C003).

By far, not all of the research participants agreed that the antidote to the serious health inequities in Canadian society was more biomedicine. Most focused their discussions on the SDH, preventative measures, and on cultural traditions in order to create healthcare programming in line with First Nation perspectives on health.

There are lot of ailments in this community, major deficiencies regarding health and there is a disequilibrium of wealth. There is a lot of abject poverty and with poor health conditions. I don't think access to healthcare is equitably distributed. Negative dynamics like drugs, alcohol, solvent abuse and dysfunction in peoples' lives (C016).

When it comes to health, it's not just the physical health of the person, it's a whole lot of things that surrounds that person and preventing them from becoming healthier. We can focus on those things (D014).

We have to go back to the land. Going back to the land means going back to culture. Chopping wood, making a fire... we have to bring that stuff back (A007).

Reconnecting with the land is all a part of health and the governments can support us on that (A0101-2).

Results and discussion

Participants spoke to decolonizing health in their communities through four interconnecting themes. First Nation control of healthcare, implied full and engaged responsibility in attending to community needs and interests. Topics included the creation of protocols, constitution and laws that ensure room to grow and economic capabilities. Control of healthcare would encompass holistic, preventative approaches to healthcare, a decolonized mind and decolonized spaces, reviving richness of the traditional languages and deep understanding of the nourishing potential of the local expertise.

Next, participants saw colonization as an external imposition, squashing cultural traditions, manifesting fear through historical manipulations at multiple levels. They saw need for a re-education and revival, inclusive of every individual in the communities. They spoke of the need to establish safety in reconnecting to the land, its resources and to one another.

Full participation was discussed as a concept unlike consensus in Western discourses, rather, as it involves engagement in health transformation by all people, representing a diversity of perceptions, experiences and interests by all genders and ages. Full participation is a foundational requirement of self-determination.

Finally, moving forward was seen to necessitate a cleaning up of debris left behind by colonization. Participants spoke at length about the havoc colonization has reeked upon them personally and upon multiple generations within their communities. They spoke to the need to delve into SDH, self-governance, and human-ecological interactions that were affected across the lifespan. Inequitable distribution of resources, imbalances of power, lack of access to societal supports were the culprits to abject poverty, drug and alcohol addictions, and poor health across the spectrum.

The participatory research study gathered voices of First Nation community members on the topic of transforming primary healthcare practices, ultimately towards improving the health of First Nations. The stories, comments, and ideas culminated in an action-oriented response to decolonization. Across the communities, people knew what they needed in order to live a healthy life - to participate in the making of that healthy life. Contrasting the knowledge gained through data analysis raised a very important question - have we complicated health so much so that we have destroyed the simple logic of how to live a healthy life? It seems power and governance issues have had such detrimental impacts on humanity as to cause discernable differences based on race, class - the creation of boundaries between human beings. Participant interviewees shared community struggles in taking back their wisdoms about the land and healing properties of substances that come from it. Colonization shaped people to doubt themselves, to feel shame about the very things meant to keep them well in the world, in their governance, and in their interactions between others and the natural environment.

Wisdom, after colonization, was a privilege only of those who earned degrees from colonial institutions. In this way, Elders stopped sharing what they knew, and medical men and women almost went out of existence. Community members at large were not asked what they thought nor invited to participate in health development activities. Instead, they learned to consult with experts outside of themselves and their cultures. All of these losses were discussed. All shaped the SDH, the poverty, the serious addictions to drugs and alcohol that we see today.

In discussions on decolonization, participant interviewees talked of the need to encourage self-determination within the communities. They emphasized the value of full community engagement with respect to inclusion of different interpretations of and experiences in the world. They highlighted the creation of shared vision for health, a notion that is consistent with previously published research [ 21, 22]. Self-determination is a capacity realized in common by members of a distinct political community, working together within shared political institutions to determine laws and policies that will share their individual and collective futures [ 21]. Engagement, for the participant interviewees, was essential for self-determination. Community empowerment developed out of a shared respect for the engaged work of community members - a kind of vitalizing medicine that develops from within.

The focus on full community participation in planning, knowledge sharing and decision-making is also in keeping with previous published research. For example, Smylie et al. [ 27] reported that local investments in all aspects of healthcare including planning, community perceptions of the programs as intrinsic, otherwise stated as having claimed a sense of ownership through high levels of engagement, are linked to positive health results.

Decolonizing health means clearing and taking back in a sensible and instinctual way, power. It involves a sharing of power - the power to know, based on being in the world and a power to do, according to one's learned and sensual interactions with physical environments. The participant interviewees shared deep thoughts about reviving lost, hidden, and denigrated knowledges. Importance of cultural continuity, revival, and the relationship between preservation, health, and self-determination was studied previously [ 47, 23].

Limitations

The data presented represents the perspectives of participants in the 8 communities studied. It does not presume to speak for the other 63 Manitoba First Nation communities, nor elsewhere nationally and internationally. However, to the extent that all Indigenous peoples have experiences colonization, the study is relevant across the globe.

Conclusion

The paper focused on the work of community members from 8 Manitoba First Nation communities to decolonize health in Manitoba, Canada. Decolonization as a concept is consistent with the work of national and international commissions discussed in the background section of this paper. The participant interviewees, guides to our overall research program, informed on the nuts and bolts of decolonizing - the how to undo colonialism and its detrimental impacts.

From a decolonizing lens, this research adds an important dimension to advancing the knowledge-base as it raises the voices and iterates the perspectives and opinions of First Nation people - healthcare workers, directors, community leaders, Elders and members at large - on a grave and timely topic. Decolonization, as the participants of this research describe it, essentially involves all members of the communities, their wisdoms, and life experiences. Future research will only strengthen our understanding about how to move past colonization to greater inclusion, development of traditional medicines, and of being in and interacting with the natural environment. Ultimately, the data gathered over the course of this research will offer meaningful and transformative strategies for improvement of primary healthcare in First Nation communities, by empowered First Nation communities.

Availability of data and materials

All data used for this analysis are protected under privacy policies of the data stewards of FNHSSM, HIRG and within the terms of the institutional review board approval for this study, and are not publicly available.

References

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Acknowledgements

We are thankful to the 8 First Nation communities who participated in the study and the First Nations Health and Social Secretariat for taking leadership and providing oversight throughout the study.

Funding

Canadian Institutes for Health Research (CIHR) provided the funding for the research.

Author information

Authors and Affiliations

1. Community Health Sciences, College of Medicine, University of Manitoba, Independent Researcher, Victoria, BC, V9C 0M1, Canada

Rachel Eni

2. Department of Community Health Sciences, Max Rady College of Medicine, Rady Faculty of Health Sciences, First Nation Health and Social Secretariat Manitoba and the University of Manitoba, Winnipeg, MB, R3B 2B3, Canada

Wanda Phillips-Beck

3. Education Indigenous Institute of Health and Healing, University of Manitoba, Winnipeg, MB, R3E 3P4, Canada

Grace Kyoon Achan

4. Department Community Health Sciences, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, R3E 3P5, Canada

Josée G. Lavoie

5. First Nation Health and Social Secretariat Manitoba, Winnipeg, MB, R3B 2B3, Canada

Kathi Avery Kinew

6. Department of Family Medicine and Community Health Sciences, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, R3B 2B3, Canada

Alan Katz

Contributions

All of the authors listed contributed to the research and writing of the paper, listed in the correct order above. Each author meets the authorship requirements as established by the International Committee of Medical Journal Editors in the Uniform Requirements for Manuscripts Submitted to Biomedical Journals. AK, JL, KAK conceived of the study. WPB, RE, and GAK developed and implemented the qualitative methods. WPB led on cultural safety for all aspects of the study design and delivery. RE created the first draft of the manuscript. All authors contributed to critical revisions and all have read and approved the manuscript.

Corresponding author

Correspondence to Rachel Eni.

Ethics declarations

Ethics approval and consent to participate

Participation in the study was voluntary and withdrawal available at any time. Full consent was given by each participant and by the community leaderships, as per First Nation community protocol and University of Manitoba ethics for scientific study. Ethical approvals were obtained from the University of Manitoba Ethics Board and from the Health Information Research Governance Committee (HIRGC), which is supported by the FNHSSM and is responsible for ethics reviews of all research proposals involving First Nations.

Consent to participate was communicated through Band Council Resolutions made by each participating community, after meeting by project team members. The research adhered to the First Nation principles of ownership, control, access and possession of data (OCAP), which gave the communities decision-making authority regarding the details of information collection, utilization, and management [ 9].

Permissions and consent forms included consent for participation, given by all participants, accepted by the ethical oversight committees. Qualitative data and material is available to the researchers with privacy protocols assured.

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Not applicable

Competing interests

The authors declare that there are no competing interests.

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Eni, R., Phillips-Beck, W., Achan, G.K. et al. Decolonizing health in Canada: A Manitoba first nation perspective. Int J Equity Health 20, 206 (2021). https://doi.org/10.1186/s12939-021-01539-7
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DOI: https://doi.org/10.1186/s12939-021-01539-7

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Decolonizing health in Canada: A Manitoba first nation perspective - International Journal for Equity in Health

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I chose this article because it's important literature to understand the impacts of restrictive abortion legislation, whether you believe in abortion or not, restricting access will be the reason people die. The legislation ties the hands of physicians and make it hard to determine when an abortion is legal or illegal, making it all the more likely that incomplete miscarriages will cause life-threatening infections and sepsis. This article specifically discusses that future physicians are not being trained on abortion procedures, they propose that practitioners should be placed in states without abortion training restrictions as restrictive states will "undoubtedly impose limits on education related to miscarriages and other OBGYN health issues" (Kheyfets et al., 2023).

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Abstract

The growing restrictive abortion policies nationwide and the Supreme Court decision on Dobbs v. Jackson Women's Health Organization place increasing barriers to abortion access in the United States. These restrictions disproportionately affect low-income people of color, immigrants, and non-English speakers, and have the potential to exacerbate already existing racial inequities in maternal and neonatal outcomes. The United States is facing a Black maternal health crisis where Black birthing people are more than twice as likely to experience maternal mortality and severe maternal morbidity compared to White birthing people. Restrictions creating geographic, transportation, and financial barriers to obtaining an abortion can result in increased rates of maternal death and adverse outcomes across all groups but especially among Black birthing people. Restrictive abortion laws in certain states will decrease already limited training opportunities in abortion care for medical professionals, despite the existing abortion provider shortage. There is an immediate need for federal legislation codifying broad abortion care access into law and expanding access to abortion training across medical education. This commentary explores the impact of restrictive abortion laws on the Black maternal health crisis through multiple pathways in a logic model. By identifying current barriers to abortion education in medical school and residency, we created a list of action items to expand abortion education and access.

Keywords: abortion, health policy, abortion restrictions, maternal health, abortion education, racial disparities

Introduction

In 2021, over 90 restrictive abortion policies had been enacted in the United States (US); more than any other year on record since the Roe v. Wade Supreme Court ruling in 1973 ( 1). The Roe v. Wade decision reduced maternal mortality rates by 30-40% for people of color by securing access to safe and legal abortions ( 2). The Supreme Court's decision on Dobbs v. Jackson Women's Health Organization has overturned the 50 years precedent set by Roe v. Wade, resulting in an immediate impact on abortion access ( 3). This decision overturned the rulings of Roe v. Wade and Planned Parenthood v. Casey, removing federal protection for abortion access and allowing states to regulate, limit, or ban abortion. As of September 2019, the majority of reproductive-age people living in the US live in abortion-hostile states ( 4). The Supreme Court's decision to overturn Roe v. Wade in the Dobbs v. Jackson Women's Health Organization decision has paved the way for 28 states with laws in place or proposed to ban abortion almost entirely through new legislation or preceding trigger laws that previously could not be enforced following the Roe v. Wade ruling ( 5-7).

Currently, 11.3 million individuals have to travel over an hour to reach the nearest abortion clinic ( 8). The repercussions of each clinic closing ripple out as more pregnant people seek services at a smaller number of centers, impacting not only the distance patients have to travel but also the congestion of each center, as they serve both local patients and patients from nearby states ( 9). A 25-mile increase in travel distance has been associated with a 5% reduction in abortions; as abortion clinics close, the remaining clinics experience an influx of patients that results in a decrease in abortions in their community ( 9). The increase of patients at facilities that provide abortions as other nearby facilities close negatively impacts the delivery of other care offered at reproductive health care clinics, such as preventative breast exams, mammograms, and pap smears ( 10).

Low-income and birthing people of color have increased rates of abortion compared to White and high-income birthing people ( 11). The abortion rate among White individuals in the US is 10 per 1,000, while it is 27.1 per 1,000 among Black individuals ( 12). Approximately 70% of pregnancies that were documented in 2014 were reported as unintended among Black people, while the rates were 57 and 42% among Hispanic and White people, respectively ( 13). Increased hostility toward accessing abortion creates an even more dangerous climate for Black people, who are already 2-4 times as likely to experience maternal mortality and morbidity than their White counterparts ( 14). Socioeconomic status, racial discrimination, and disproportionate access to health care, including more effective forms of contraception, are pivotal determinants in experiencing unintended pregnancies and similarly limit abortion access. Black people live in states with the most restrictive policies regarding abortion ( 15).

Hostile restrictions to abortion access coupled with the pre-existing Black maternal health crisis will result in increased rates of mortality and morbidity among Black birthing people. One study estimates a total abortion ban in the United States would result in an additional 140 maternal deaths annually ( 16). This would be a 21% increase in maternal death and a 33% increase for non-Hispanic Black individuals ( 16). One study estimated that the closure of abortion clinics and early gestational age limits increase maternal mortality by 6-15 and 38%, respectively. Worldwide, unsafe abortion results in the loss of 68,000 lives annually ( 17). Restrictions on legal and safe abortion can force individuals to resort to unsafe abortions performed by untrained individuals in unsafe settings, using methods that fail to meet healthcare standards ( 18).

This commentary showcases the impact of restrictive abortion laws on the Black maternal health crisis through multiple pathways in a logic model. The logic model in Figure 1 explores the connections between abortion restrictions and the worsening Black maternal health crisis further, using abortion education and training as both a determinant and strategy ( 19-21).

Figure 1.

The impact of abortion restrictions on the US Black maternal health crisis logic model.

Looking forward: abortion education

Abortion education and training for medical students and residents, as well as related reproductive care, will become even more limited than it was prior to Dobbs v. Jackson Women's Health Organization ( 22). These limitations on education will exacerbate racial inequities in maternal health by further limiting the quality of routine obstetric care in certain geographic regions that are already devastated by poor maternal health outcomes and by reducing opportunities to improve abortion provider diversity and provider concordance that was lacking prior to the Dobbs decision. In overturning Roe v. Wade, a distinction between essential healthcare and abortion has been made. However, routine obstetrical care includes abortion ( 23). It is imperative that future physicians have access to training on essential healthcare such as abortion. Similarly, abortion providers who have academic appointments in hostile states may be limited in what they can teach, and the number of clinical learning opportunities for abortion during the final 2 years of medical school will likely decrease ( 21, 22). The decision to overturn Roe v. Wade will not only make it more difficult for providers to perform abortions, but could also affect training in and care for patients requiring lifesaving miscarriage and ectopic pregnancy care ( 21, 24). Across various specialties, such as emergency medicine, residents find themselves weighing the options between facing criminal charges for performing an abortion, or losing their patient whose survival depends on access to an abortion ( 25). Lack of abortion training access will decrease the quality of care physicians provide and the quantity of physicians able to provide this care in abortion hostile states. Thus, we sought to explore the current atmosphere of abortion training and how it will impact the Black maternal health crisis in our logic model and narrative review.

Abortion education in medical schools

By the age of 40, one in four American birthing people have undergone at least one abortion procedure in their lives, making abortion one of the most common healthcare procedures in the US ( 4, 26, 27). Professional organizations such as the American College of Obstetricians and Gynecologists (ACOG) recognize abortion as an important and core topic for medical education ( 28). Despite being one of the most widely utilized maternal health care services and recognized as an essential topic for medical education, the majority of US medical schools lack sufficient abortion education ( 27). While competing priorities and the breadth of information necessary to provide are causes of limitations in all preclinical education, one cause for the insufficient attention given to abortion during preclinical years lies includes the underlying sexism and racism present in medical education ( 29). Medical practice inadequately considers gender in the areas of diagnosis, treatment, and disease management for men, women, and gender minorities ( 30). Gender minorities have been systematically excluded from medical and scientific knowledge. As a consequence, the healthcare system has been shaped by and catered to men. This bias in healthcare and clinical research has far-reaching implications for obstetric health and medical practices compromising the quality of care provided to birthing persons ( 31, 32). The logic model in Figure 1 showcases the medical bias is worse for racial and ethnic minorities demonstrated by the current Black maternal mortality crisis rooted in the history of obstetric racism present in the US.

There is very limited data on abortion curricula in US medical schools ( 33). One of the few studies published on this topic demonstrated that abortion education is not thoroughly incorporated into medical schools' curricula: 17% of medical schools in the US did not formally teach abortion, and less than 50% of schools dedicated at least one lecture on abortion ( 26). Of the schools that offered clinical abortion care experience, it was included in the third year of medical school as an elective course that interested students had to actively seek out ( 26). Another study requesting information from the 126 accredited US medical schools' OB/GYN clerkship directors found that nearly a quarter of schools offered no formal abortion education in their clinical and preclinical program years, and a majority of schools only offered one abortion-care lecture elective course ( 34). An updated preliminary 2020 study reported that since 2005, there have been increases in abortion education availability in American medical schools, but compared to the national demand, the increases are insufficient ( 35). This is only set to progressively worsen with abortion education being limited in nearly half of the country.

In the year following the Dobbs decision (2022-2023), states with the most severe abortion restrictions found a 3.0% decrease in all applicants into residency programs, with a 10.5% decrease in OB/GYN applicants compared to previous application cycles ( 36). In a single application cycle, the impact of the Dobbs decision and subsequent abortion bans and restrictions has been made clear by these graduating medical students choosing to practice in other states. This change foreshadows a decrease in the number of physicians in states with abortion restriction, in OB/GYN as well as other specialties.

Abortion training in residency

The Accreditation Council for Graduate Medical Education (ACGME) and ACOG require and recommend all 267 accredited obstetrics and gynecology residency programs in the US provide access to abortion training and routinely teach abortion care to their residents ( 33). A study published in 2019 surveying OB/GYN Program Directors found that out of 190 respondents, 10 programs do not offer any abortion training at all (5%), 59 offer optional abortion training (31%), and 121 programs routinely schedule training for their residents (64%) ( 37). This is concerning as contraception, miscarriage management, medication and surgical abortion methods are highly necessary and routine health procedures for a large part of the US population ( 4).

Recent years have demonstrated increased integration and abortion care training among family medicine physicians. Family medicine physicians are the most common specialty in medicine practicing in abortion-care deserts, places with a lack of abortion-care/abortion-care access limitations ( 38). In a nationally representative sample of family medicine physicians, over 80% described having treated early pregnancy loss and 73% agreed that abortion was within their scope of practice, whereas only about 15% of family medicine providers in this survey reported offering early abortion care. This discrepancy may be explained by the fact that only 7% of all nationally accredited family medicine residencies offer abortion-care training ( 38). All medical practitioners who serve reproductive-aged birthing people must understand and be able to adequately facilitate abortion care and comprehensive family planning counseling, even if they do not perform the abortions themselves ( 33).

Following the Dobbs decision overturning Roe v. Wade, approximately 44% of residents in OB/GYN programs will no longer have access to in-state abortion training ( 39). Before Dobbs, residents in Missouri had to go to Illinois to be fully trained in abortion, now traveling elsewhere to practice these skills will become a reality for residents in Texas and other states that are hostile to abortion, though coordinating this effort will be difficult ( 21). Physicians in Louisiana are concerned that they will not be able to recruit the best physicians to the state due to the new laws limiting abortion training and provision opportunities, impacting the quality of care for its residents ( 24).

Barriers for providers

Over the past several years, the number of abortion providers in most states has significantly declined. As of 2017, 89% of all US counties do not have an abortion provider available for their residents ( 4). The abortion provider decline is associated with the increasingly restrictive and hostile abortion legislation taking hold in the US ( 4, 40). Over the last decade, there have been 479 abortion restrictions enacted in 33 states, even though abortion is one of the safest medical procedures ( 40).

States with abortion bans or restrictions experience adverse outcomes including limited maternity care providers, maternity care deserts, higher rates of maternal mortality and infant death, especially among people of color, elevated death rates for birthing individuals of reproductive age, and greater racial disparities in healthcare ( 41, 42). Maternal death rates in abortion-restriction states were 62% higher than in states with greater abortion access states (28.8 vs. 17.8 per 100,000 births) ( 43). Abortion-restrictive states have a 32% lower ratio of obstetricians to births and a 59% lower ratio of certified nurse midwives to births compared to states with abortion access ( 41). The recent Dobbs decision could exacerbate this disparity as it may deter some maternity care providers from practicing in states where their work faces legal challenges, as seen in the recent residency application cycle ( 36). Insufficient maternity resources not only restrict access to birthing services, but also make it harder for pregnant individuals to access early and continuous prenatal care. In 2020, states with abortion restrictions had a 62% higher proportion of individuals giving birth who either received no prenatal care or received it late when compared to states with abortion access ( 44).

Surveyed Maternal-Fetal Medicine (MFM) providers stated that individual, institutional, and state-level factors impact their ability to provide abortion care in their practices ( 40). Limitations such as abortion public funding, cost, state mandates, waiting periods, and institutional policies impact their ability to provide abortion care ( 40). MFM physicians practicing in supportive abortion legislation states reported higher abortion provisions than those physicians practicing in abortion-hostile states, resulting in an unequal geographic distribution and representation of abortion providers and abortion clinics across the US and reduced access to reproductive health services ( 40). The disproportionate distribution of physicians is especially dangerous for high-risk patients whose pregnancies pose impending physical threats to their lives and who are located in areas with reduced or no access to family planning counseling services ( Figure 1). All these factors readily contribute to the rising US maternal mortality rates, especially for Black birthing people who face more deadly birth inequities that are slated to worsen as states further eliminate access and support for abortion ( 15, 40). Abortion providers and clinicians standing up to these injustices are facing immense backlash. For example, a physician in Indiana publicly shared a story of her 10-year-old patient who was raped and could not obtain an abortion in their home state; subsequently she was humiliated by state attorneys, called a liar, and is now facing legal troubles ( 45).

Provider concordance

Abortion hostility and restrictive legislation throughout institutions is not the only problem in accessing abortion and reproductive health care services, or training abortion provider. The abortion provider and abortion care workforce does not reflect the communities it serves. After centuries of canceled and compromised reproductive autonomy, Black birthing people once again find their health and rights in the hands of people who do not share their lived experiences. The majority of abortion care providers are White and serve largely non-White, immigrant, low-income, and non-English speaking populations ( 46, 47). This is a result of the systematic exclusion of people of color from the medical profession and results in the exclusion and stigmatization of patients ( 48). Nearly half of all abortions obtained in the US are by those whose incomes are below the federal poverty level ( 46). Despite this, wealthy, White individuals still hold the greatest power and leverage over the legislative decisions being made, the pathways created for education, pathways for employment and work, and education curricula surrounding abortion and reproductive health care. As training opportunities for abortion care become more limited across the country, there is further limitation to training culturally concordant providers.

Diverse physicians, healthcare specialists, and administrators are associated with improved health outcomes for underserved, vulnerable, underrepresented, and underprivileged patient populations ( 49). Not only are there improved health outcomes but a more diverse physician workforce is also associated with White doctors being more culturally competent and better serving minority patients ( 50). There must be increased workforce diversity in the physician and medical care workforce as a whole, and in abortion provision in particular, as cultural humility, competence, and respect are essential in creating an unbiased, quality healthcare system rooted in justice and equity ( 51). As opportunities for training become more limited with the elimination and severe restriction of abortion access, increasing provider concordance will become even more difficult, and should remain a focus of programs seeking to improve health equity.

Call to action

In recent years, with advocacy efforts from Medical Students for Choice, the Kenneth J. Ryan Program, and Reproductive Health Education in Family Medicine (RHEDI) programs, the availability of abortion education in some US medical schools has improved ( 4, 27, 52). The overturn of Roe v. Wade will undoubtedly impose limits on education related to miscarriages and other OBGYN health issues ( 21). To combat this, abortion education must be embedded into the overall medical school curriculum for all US medical schools ( 27). The healthcare field should be intentional in training the next generation of clinicians. This can be accomplished by requirements set forth by the American Medical Association, Association of American Medical Colleges, and the American Association of Colleges of Osteopathic Medicine, for all medical schools to include evidence-based abortion education in their preclinical curricula, and as possible in their clinical years. For schools in states with limited training to abortion, efforts should be made to offer abortion training experiences or dedicated time to establish them in other states during clinical years. Further, standardized exams can demonstrate the ubiquity of and normalize abortion by including the topic as an unstigmatized procedure on the United States Medical Licensing Exams and Comprehensive Osteopathic Medical Licensing Examinations. It is crucial to incorporate abortion training into the medical school curriculum, similar to any other surgical or medical procedure, to diminish its associated stigma ( 28).

Both residents and medical students should be supported by their respective institutions for advocacy work being done to improve access to abortion care. Residents in specialties adjacent to abortion care including pediatrics, anesthesia, and emergency medicine, should be trained on counseling for abortion care options and where to refer patients. Programs that offer abortion training must also be intentional in recruitment of trainees. Not only should the number of abortion providers in training increase, but also the racial concordance between physician and patient should be considered as a determinant of patient experience and outcomes.

Attention should be focused on improving access to abortion medication outside the clinic setting. Self-managed abortions are as safe as those in the clinic and online telemedicine can be highly effective ( 53, 54). Most importantly, physicians of any specialty should not report individuals who seek care following a self-managed abortion. Legislative action is necessary to secure reproductive rights long-term. The healthcare field should advocate for establishing federal law securing access, in particular, to abortion and reproductive healthcare, including federally enacting the Women's Health Protection Act ( 55). Given the fact that nearly one-quarter of birthing people in the US will have an abortion in their lifetimes and that abortion restrictions disproportionately impact already vulnerable populations, the medical community must leverage its power to protect the right to abortion and provide appropriate resources through advocacy.

Data availability statement

The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author.

Author contributions

AK: Conceptualization, Data curation, Investigation, Methodology, Project administration, Visualization, Writing - original draft, Writing - review & editing. SD: Conceptualization, Data curation, Investigation, Visualization, Writing - original draft, Writing - review & editing. PF: Conceptualization, Data curation, Investigation, Writing - original draft, Writing - review & editing. FK: Conceptualization, Data curation, Supervision, Writing - review & editing. AL: Conceptualization, Data curation, Supervision, Writing - review & editing. BM: Investigation, Writing - original draft. LC: Writing - original draft, Writing - review & editing. EA: Writing - original draft, Writing - review & editing. NA-O: Conceptualization, Supervision, Writing - review & editing.

Acknowledgments

We would like to thank the CENTRS Health organization physicians for their mentorship in this project.

Funding Statement

The author(s) declare that no financial support was received for the research, authorship, and/or publication of this article.

Conflict of interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

References

8. Lai K. K. R., Patel J. K. (2019). For millions of American women, abortion access is out of reach. The New York Times. Available at: https://www.nytimes.com/interactive/2019/05/31/us/abortion-clinics-map.html, https://www.nytimes.com/interactive/2019/05/31/us/abortion-clinics-map.html.

9. Lindo J., Myers C., Schlosser A., Cunningham S. (2017). How far is too far? New evidence on abortion clinic closures, access, and abortions. National Bureau of Economic Researh, Working Paper 23366.

24. Vidal O. (2022). An OB/GYN professor reflects on how the new abortion laws could affect medical education in La. Fox 8 live. Available at: https://www.fox8live.com/2022/06/27/an-obgyn-professor-reflects-how-new-abortion-laws-could-affect-medical-education-la/.

52. RHEDI Programs - RHEDI . (n.d.). Available at: https://rhedi.org/rhedi-programs/ (Accessed July 25, 2022).

55. Women's Health Protection Act of 2021 . (2021). H.R.3755, 117th Congress (2021-2022).

Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author.

Articles from Frontiers in Public Health are provided here courtesy of Frontiers Media SA

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The impact of hostile abortion legislation on the United States maternal mortality crisis: a call for increased abortion education

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The growing restrictive abortion policies nationwide and the Supreme Court decision on Dobbs v. Jackson Women's Health Organization place increasing barriers to abortion access in the United States. These restrictions disproportionately affect ...

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This photo was taken by a mother who faced many breastfeeding challenges, at first it was a tongue tie that prevented the baby from latching and then she got severe mastitis and felt overwhelmed, she wanted to quit. Eventually she was able to breastfeed and this picture was taken while feeding and the mom talked about how she could feel her son's gratitude for not giving up breastfeeding (Breastfeeding Art Expo et al., 2018).

I chose this piece because even though there are many barriers, challenges and pressures that mothers face in their breastfeeding journey, with the proper care and support, it can be overcome.

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Niagara Health Indigenous Art for Outpatient Mental Health Units

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Niagara Health Indigenous Art for Outpatient Mental Health Units

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These art pieces are were made by Alicia-Lynn Morin, a self-taught Indigenous artist from the Niagara area. Robin Crown is a clinical manager with Niagara Health said that the "artworks remind us to value both perspectives and the connections that ground us" (Niagara Health Unveils Indigenous Art Pieces for Outpatient Mental Health Units, 2024). I chose to include this art piece because of what it represents, mental health runs deeper than traditional colonial lenses allow us to address. Often mental health care is delivered in a setting that feels clinical to those who experience it, art can help diffuse that feeling and including art that displays a variety of cultural values contributes to a safe space for many.

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Decolonizing Health Care: Reconciliation Roles and Responsibilities for White Settlers | Critical Studies: An International and Interdisciplinary Journal (click PDF link to read full article)

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Decolonizing Health Care: Reconciliation Roles and Responsibilities for White Settlers

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Decolonizing Health Care: Reconciliation Roles and Responsibilities for White Settlers

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This research is laying out guidelines for settlers to engage in decolonizing the healthcare system. McGibbon outlines that white settler privilege is shown in the biomedical focus of health and wellness and suppressing the traditions related to Indigenous healing, McGibbon poses that "[d]colonizing involves actively seeking knowledge about postcolonial ideas and imperatives" (2018). The process of decolonizing is often uncomfortable for those who still hold colonial ideas even if they are unaware. It is vital that white settlers work toward reconciliation, for the safety of all and especially in healthcare. Reconciliation is vital for patient safety, physical, mental and spiritual safety.

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Authors Elizabeth McGibbon St. Francis Xavier University

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Decolonizing Health Care: Reconciliation Roles and Responsibilities for White Settlers | Critical Studies: An International and Interdisciplinary Journal

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The purpose of this paper is to enhance a nascent discussion to white settlers about how they can be active participants in reconciliation action to decolonize health careâ€”by way of truths. I start with an examination of settler denial and settler truth-telling about Indigenous genocide, along with the deadliness of white settler health care racism, which results in embodied oppressionâ€”oppression that is the root of Indigenous inequities in the social determinants of health (SDH). White settler privilege is emphasized, including persistent impacts of Western, Eurocentric, and biomedical knowledge dominance in health care, and related suppression of Indigenous knowledge systems and healing traditions. I analyze how white settlers can engage in performing decolonization with critical perspectives on the SDH, allyship, and anti-racist, anti-oppressive health care. Although persistent white settler acts of racism, including systemic racism in health, legal, and educational systems, make reconciliation seem an impossible goal, we continue to be ethically bound to walk alongside Indigenous peoples in the Truth and Reconciliationâ€™s Commissionâ€™s Calls to Action.

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People Living with HIV and AIDS: Experiences towards Antiretroviral Therapy, Paradigm Changes, Coping, Stigma, and Discrimination—A Grounded Theory Study

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People Living with HIV and AIDS: Experiences towards Antiretroviral Therapy, Paradigm Changes, Coping, Stigma, and Discrimination—A Grounded Theory Study

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Discrimination is rampant in those who identify as LGBTQ+, far too common of an experience. This study examines how discrimination affects treatment adherence of those who have HIV, they found that the disease itself is not the most stressful, the most stress is caused by coping with the diagnosis (Beichler et al., 2023). The study concluded that reducing the stigma and discrimination around HIV is necessary for reducing its prevalence and more research is needed develop interventions for the stigma (Beichler et al., 2023). The AIDS crisis is a dark stain on human history, many LGBTQ+ individuals still feel its effects today, many lost loved ones. The fear of the condition resulted in slow development for treatments and care was mostly comfort based, today it is very possible to live a long life with the use of antiretroviral medications. The treatment of HIV carriers during the early days of the disease was atrocious and inhumane, I remember what people went through to remind me of what kind of practitioner I will never be.

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Nursing School, General Hospital, Medical University Vienna, 1090 Vienna, Austria

Department of Social and Preventive Medicine, Centre for Public Health, Medical University of Vienna, 1090 Vienna, Austria

Academy for Ageing Research, Haus der Barmherzigkeit, 1160 Vienna, Austria

Department of Social and Preventive Medicine, Centre for Public Health, Medical University of Vienna, Kinderspitalgasse 15/1, 1090 Vienna, Austria

Author to whom correspondence should be addressed.

1. Introduction

In the last 40 years since the outbreak of the HIV pandemic, more than 30 million people have died of AIDS [ 1] Human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) continue to spread worldwide. The efficacy of ART with modern drug combinations for the treatment of HIV/AIDS allows many people, despite their chronic disease, to have a life expectancy comparable to that of people without the infection [ 2].

The association among a high CD4 cell count, undetectable viral load, reduced comorbidities, and high quality of life has been confirmed [ 3]. Improving socioeconomic disparities, clinical factors, holistic treatment management, and health policy strategies for prevention, education, and also reducing stigma and discrimination influence treatment outcomes and improve quality of life [ 4]. Overall, this has led to a paradigm change for PLWH both in addressing the diagnosis and in the daily management to cope with the chronic disease. Particularly in highly industrialized countries, HIV can now be integrated and managed particularly well in daily life. The modernization of diagnostics and early initiation of antiretroviral therapy make optimal disease management possible, accompanied by seamless care of the treatment team [ 5]. Women living with HIV occupy a special position due to the prevalence of transmission, social positioning, vulnerability, need for pregnancy, risk of premature birth, and earlier onset of menopause but also violence against women [ 6].

Planning for the personal future, due to the reduction of mortality especially in industrialized countries with access to ART, is possible today [ 7].

In the EU countries, approximately 25,000 people were diagnosed with HIV in 2021.

PLWH treated according to international recommendations can reach an almost normal life expectancy with good quality of life [ 8]. A high level of adherence is necessary for successful treatment with ART [ 9]. This corresponds with agreed recommendations, shared decision-making, patients' perception, and experiences from the Health-Care Professionals (HCPs) as cornerstones for ART adherence [ 10]. Despite the decreasing fear of AIDS and the paradigm change by the reduction of old clichés, PLWH are still confronted with discrimination and stigmatization in different areas of life [ 11]. Goffman (1979) [ 12]. describes stigma as physical signs burnt into the bodies of social outcasts in ancient Greece to reveal their social status. Stigmatization is discrediting, and discrimination results from it [ 13]. Furthermore, stigma has an impact on the health and well-being of individuals, particularly as it induces high rates of psycho-sociological stress [ 14]. PLWH especially in combination with homosexuality, bisexuality, high promiscuity, and intravenous drug use are groups that are particularly discriminated.

Aims

This grounded theory study aimed to examine the subjective perspective of PLWH concerning living with, coping with, and managing HIV/AIDS. We also aimed to describe an up-to-date picture of PLWH including their personal views on living with HIV/AIDS in everyday life, at work, and in society in Austria and Germany.

2. Materials and Methods

Grounded Theory Methodology (GTM) was used to describe and conceptualize people's views, actions, and life experiences [ 15].

2.1. Recruitment and Participation

People participating in the study were recruited via physicians and through civil society organizations. Participants were made aware of the study via flyers and were directly approached and referred by HCP from January to September 2022.

2.2. Ethical Consideration

Ethics approval was provided by the Ethics Committee of the Medical University of Vienna (EK no. 1610/2019). Before the interviews, participants were provided with information on the study with an opportunity to seek additional information or clarification. Participants gave their written informed consent that included that all data were anonymous with code names assigned to all participants.

2.3. Data Collection and Analysis

All semi-structured face-to-face interviews were conducted by the first author. The thematic construction of the interview guide ( Table 1) was based on the phenomena formulated in the research questions and the current research literature. Interviews were digitally recorded and transcribed verbatim. Interviews lasted 45-90 min. Interviews were mostly performed via video-call.

Based on Strauss and Corbin's (1996) suggestions for an inductive approach to interviewing questions, each interview started with an open-ended question asking participants "how are you doing right now?"

Data analysis was performed in three steps, open, axial, and selective coding. The analysis was supported by MAXQDA 2022 version 22.2.0 software. The theoretical sampling gives the researcher a continuous direction within the data collection process.

3. Results

3.1. Participants

A total of 25 interviewed participants (n = 25, 10 women, and 15 men, aged 23 to 65 years) participated in the study ( Table 2). All PLWH had been diagnosed with HIV of varying durations (mean duration of HIV infection in years = 18.0 years, SD 13.1). The time of diagnosis varied from 1983 to 2021. Most male participants are homosexual and have sex exclusively with men. One of them was heterosexual and got infected during male contact. Some of the men were infected by their partners in existing partnerships. Some men were infected with HIV at the beginning of the HIV pandemic in the 1980s where people did not yet know about HIV. All interviewed women were infected by their HIV-positive partners in existing partnerships. Additionally, it should be noted that most of the participants never talked about HIV with their partners.

The analysis of the qualitative data generated five core categories: (1) coping with the diagnosis through a paradigm shift, (2) psychosocial burden of HIV, (3) ART as a need, (4) trust as a requirement in HIV disclosure, (5) stigmatization and discrimination. Furthermore, subcategories were formed for each core category ( Figure 1).

3.2. Coding Paradigm

The central coding paradigm ( Figure 2) consists of the phenomenon of "fast coping with diagnosis is possible due to paradigm change", the causal condition "psychosocial burden caused by the HIV diagnosis", the intervening conditions "relationship to Health Care Professionals, Shared decision making, health literacy", the contextual conditions "stigmatizing and discrimination", as well as the main strategy "immediate start of the antiretroviral therapy", and the consequences if the management of the overall situation is successful and the need for disclosure in different settings and situations.

The central phenomenon is influenced by stigma and discrimination as the temporal, local conditions, social and cultural environment, and individual biography of PLWH and with intervening conditions as the relationship with HCPs, the coping strategy (anonymity, discretion) to avoid stigma and discrimination, adherence as a self-imposed and external commitment, health literacy, and shared decision making.

3.3. Central Phenomenon-Fast Coping with Diagnosis through a Paradigm Change

The central phenomenon as a successful way to deal with challenges is characterized by the rapid development of the first coping strategies to overcome the shock and quickly regain the ability to act in daily life. The diagnosis is directly connected with the beginning of the therapy. This gave most of the participants a high degree of security together with health care professionals.

The group of participants interviewed was a very heterogeneous group. One thing remained the same for all persons-the diagnosis always came unexpectedly with the person being unprepared and was surprisingly associated with psychosocial crisis and shock.

The paradigm shifts in particular were experienced by most of the participants interviewed as an advantage in coping with HIV infection, due to the possibility of antiretroviral therapy immediately after diagnosis. In particular, the ease with which the tablets can be taken means that the HIV diagnosis can be quickly integrated into everyday private and professional life without any particular challenges.

The communication of the positive test result by professionals was characterized by shock, psychosocial crisis, stress, surprise, excessive demands, inability to act, loss of control, and above all, the loss of self-confidence for the participants interviewed. HIV represents the worst thing that has to be accepted, less the coping with the diagnosis in everyday life.

PLWH described coping as an actively initiated process of learning and confronting how to deal with the (new) situation, including emerging future problems. The paradigm shift has occurred due to the reduction of stereotypes, as well as the improved treatability with modern ART. This led to rapid coping with the currently shocking and overwhelming diagnosis.

Successful coping, usually with psychosocial support from professionals, leads to the ability to act and acceptance of the diagnosis. Participants also describe coping with the diagnosis as an opportunity for further development as a grown personality with new professional and private opportunities. Successful coping with the diagnosis results in a strengthened self-confident personality.

The integration of HIV into everyday life is nevertheless described under the aspect that HIV remains as an integral part of life and can never be completely excluded through regular confrontation with the topic. PLWH also describe that the quality of life, although HIV indirectly determines life, is not affected by thoughts of HIV.

For most of the participants, the diagnosis is communicated to the future treatment team. A relationship develops between the physicians and nurses. This relationship grows through trust, especially through the regular three-monthly check-ups, which are an integral part of the treatment process. One woman specifically chose a physician who has a high level of psychosocial competence. Health literacy, with the need for continuous information and knowledge about individual blood results and check-ups, is also increasing among the participants. The opportunity to discuss treatment, changes and breaks in therapy with the physician, but also the interest in and significance of the individual laboratory parameters (especially the viral load and CD4 cell count) is experienced as a need.

In a special way, all participants emphasize this paradigm shift, which is mainly due to ART. Those who became infected with HIV after 1996 have benefited the most, because the threat of the disease has been reduced to a minimum. This makes rapid management possible, and HIV no longer dominates everyday life due to the absence of side effects.

3.4. The Psychosocial Burden Caused by HIV

Psychosocial burden caused by HIV is characterized by shock, overwhelm, surprise, coping as an actively initiated process, relationship with the HCP, threat potential minimized, and personal growth. The psychosocial burden dominates with the loss of self-confidence, shame, feeling of guilt, social withdrawal, loss of joy of life, self-isolation, social isolation, loneliness, and depression, and some participants reported suicidal thoughts.

Some of the PLWH said that they could not focus on anything else during this phase. Women in particular described psychosocial stress, social withdrawal, self-isolation, loneliness, loss of joy in life, feelings of shame and guilt, and suicidal thoughts. Men did not report feelings of shame and guilt during this phase.

One man is crushed by the diagnosis to this day (3 years) and has been unable to find coping strategies to integrate HIV into everyday life. Suicidal thoughts regularly dominate the day.

3.5. Antiretroviral Therapy as a Need

Regarding the ART, the focus is on an undetectable viral load. Adherence concerning ART is self-imposed, with external commitment, the development of consequence, continuity, and health literacy as a need for shared decision making.

The prescription of therapy is closely related to relationship building with the prospective treatment team. The immediate and prompt start of ART, especially among participants who contracted it between 2010 and 2022, is a great need, with the feeling that "something is being done against the virus", and this suggests safety and protection of the immune system.

The viral load parameter has become the decisive health parameter and stands for health, well-being, and quality of life, but also for being able to live with the chronic disease HIV.

Adherence is described by all 25 participants as manageable, with no burdens or restrictions on the quality of life. The simple drug dosage (single dose), frequency of intake, and the good tolerability of the ART enable rapid integration of ART in daily life without adaptation.

The motivation for adherent behavior also relates to compliance with the control examinations (three-monthly viral load determination, CD4 cell count), as well as ensuring a sufficient supply of pills. Furthermore, the importance of adherence as a commitment to self and society was described. The care paradigm Undetectable is Untransmittable (U=U) developed by The Joint United Nations Programme on HIV/AIDS (UNAIDS) becomes the metaparadigm in the lives of all patients interviewed.

Even if the experts guarantee that the virus will not be transmitted, most participants are still very careful and describe fear of infecting someone. Couples with a serodiscordant HIV status will not practice unprotected intercourse.

Moreover, the idea to prevent the further global spread of HIV, as well as the protection of people, is in the foreground of the participants.

Health literacy with the need to take responsibility for the disease and to be involved in all treatment decisions (shared decision-making) is particularly important to most of the participants.

They want to take responsibility for the disease and have a say in all treatment decisions. They want to know what is happening to their body. The importance of continuous information about the individual blood results and the results of the control examinations are important to know. The psychosocial competencies of the HCP were emphasized by the participants.

3.6. Trust as a Requirement for HIV Disclosure

HIV disclosure as a need has become visible through the issues strengthened, self-confidence, integration of HIV into everyday life, necessity for sexuality, intimacy, partnership, through outing HIV gets space in life, trust as a requirement, and not to be reduced to HIV.

With coping and integrating HIV into everyday life, comes the feeling for partnership, friendship, and sexuality. Especially women said that they talked about the HIV diagnosis when they met a new potential partner for a relationship. Trust had to be built first so that the diagnosis could then be shared like a thoughtful process.

In addition, HIV outing is carefully analyzed and weighed with advantages and disadvantages. This has an influence on the process of coming out.

Once the diagnosis has been processed and ART has become ritualized in everyday life, the need for a self-confident and self-determined life in society was described by the participants. Disclosure of the diagnosis was considered when it was absolutely necessary to share the diagnosis, for example, when visiting a doctor for a specific treatment (surgical procedure) and it was important to talk about the HIV infection.

Some participants told us that they also do not want to be reduced to HIV with stereotypes.

Especially women talked about gender-specific aspects and described their insecurities. Women described that during pregnancy, as well as birth, the information about HIV is necessary and the diagnosis was disclosed to the doctors. The certainty of not infecting the unborn child if the viral load is not detectable is not always fully given by the participants.

Women describe themselves as more vulnerable than men and that this vulnerability also has a negative impact on their self-esteem. Ideals of beauty, especially when there is a body image disorder due to a change in the figure (lipodystrophy syndrome), are in the foreground. Fear of the disease becoming visible to society and an unwanted outing of the person is a concern for PLWH.

3.7. Stigmatization and Discrimination

Stigmatization and discrimination are complex and characterized by discreditation above all in the workplace, stigmatization through stereotypes, self-stigmatization, discrimination by HCPs, the coping strategy anonymity and discretion, and freedom through being HIV-restricted ( Figure 3). Stigmatization and discrimination have a significant influence on how the diagnosis is dealt with externally in society and can be an obstacle to adherence to ART. In addition, the overall burden of the situation is intensified. In the context of outing the diagnosis, the risk of discrimination increases.

The causes of stigma are rooted in the fear of HIV. Especially the older participants, those who were some of the first to become infected with HIV in the 1980s, were filled with misconceptions about HIV as well. Many of our perceptions about HIV stem from the HIV images of the early 1980s. There are still misconceptions about HIV transmission and what it means to be infected.

Two participants reported that they suffered from loss of appetite and wasting syndrome for a period of time due to HIV. The result was high weight loss with weakness and fatigue. Long periods of inability to work were the result. From the employers' point of view, the reason to question the situation was with the result that the pressure increased by hiding the HIV infection.

One woman reported that the employer was able to find out about the HIV infection in a roundabout way. In this case, termination also followed. The level of material threat has increased for this reason.

The lack of information in society combined with the old stereotypes and perceptions causes people to be afraid of contracting HIV. In addition, people think that HIV infection is reserved for a certain group. This in turn leads to negative values and value judgments about PLWH.

Discrimination by HCPs, including loss of job, was experienced by some participants. PLWH described HCPs as refusing to provide services. Women respondents in particular described that discrimination still occurs against PLWH by refusing an appointment by the gynecologist.

Most of the participants interviewed indicated that discrimination was especially prevalent among dentists and dermatologists.

Especially in rural areas, PLWH are even more exposed to stigma and discrimination. Possible job loss results in material threats to livelihood, social isolation, loss of friendships and family, loneliness, and depression.

PLWH internalize the stigma and begin to develop a negative self-image. Feelings of being reduced to HIV develop. Participants described a fear of discrimination, as well as the uncertainty of being stigmatized and discriminated against by coming out.

This gives rise to increased vigilance for most, as well as anonymity and discretion as a strategy. Nevertheless, outing the diagnosis is sometimes necessary to gain support from professionals in the health care system. This simultaneously risks exposure to stigma and discrimination. The patients interviewed argued for more social acceptance and equal treatment to live openly with their disease.

4. Discussion

This grounded theory study aimed to explore the experiences of how PLWH in Austria, Berlin, and Munich describe their everyday life and what challenges in coping and burdens have to be overcome. We also explored the experiences with ART, adherence, coping with the diagnosis, and the experiences about the relationship with their HCP. Furthermore, the investigation of experiences of stigma and discrimination was an additional aim. We identified five categories as crucial outcomes. The diagnosis is shocking and triggers a loss of self-confidence. Coping is challenging and intensely but briefly dominates daily life. Ferlatte et al. (2022) [ 16]. confirmed that suicidal ideation is particularly high among MSMs in the context of an HIV diagnosis. Our results are in line with another study that clearly showed that the diagnosis of HIV is still devastating news for PLWH, associated with a psychosocial stress response, shock, powerlessness, anxiety, and depression [ 17]. Interestingly, it has been found that processing shock and gaining agency take only a short time and the threat of HIV/AIDS is significantly reduced due to good treatability. The communication of the diagnosis and the prescription of ART simultaneously are state of the art. This is in line with DAIG (2022) [ 18], showing that the viral load is effectively suppressed below the detectability limit in the first two to four months. Knight et al. (2019) [ 19]. denied this finding and pointed out that the initiation of ART immediately after a diagnosis predominantly refers to countries where universal and unrestricted health care is available for PLWH. Areas of sub-Saharan Africa but also countries in Asia do not have these possibilities. The ritualized taking of pills, mustering high adherence, continuity, and integration of therapy into daily life are managed without challenges. This is in line with other studies that found that a viral load below the detectability threshold and CD4 cell count become important health determinants [ 20].

The relationship with the HCP, as well as the development of health literacy, increased self-confidence and provided reassurance [ 21]. Outing the HIV diagnosis is mostly a deliberate process based on trust with the other person. This is in line with Bickel et al. (2020) [ 22] who found that stigma and discrimination still occurred and were prevented primarily by anonymity and discretion.

Men differed from women in how they coped with the diagnosis. Men were more inclined to process the new situation through distraction, blame, displacement, and low growth than women. Women were ashamed but actively processed the diagnosis, got information about HIV, and tried to cope with the situation. Loss of self-esteem, feelings of shame and guilt, and self-stigma made women especially vulnerable during the diagnosis processing phase. These findings were confirmed by other studies, which describe that women coped with their diagnosis more constructively than men [ 23]. In addition, the study confirmed that men were less vulnerable and did not suffer as much loss of self-confidence as women as a result of the diagnosis [ 24]. The association between emotion-oriented coping strategies and social support with anxiety symptoms and depression has been confirmed [ 25]. Insecurity, the inability to act, hopelessness, sadness, stigma, and discrimination call for emotional support [ 26]. With effective ART, the early diagnosis and treatment of HIV are defining issues from an individual and public health perspective, in terms of prevention [ 27]. HCP relationships and resilience building are important pillars for ART adherence [ 28]. With the communication of the diagnosis, relationship building and trust between patients and HCPs is paramount [ 29]. HCPs pursue with the patient the goal of facts about HIV/AIDS, ART adherence and treatment success, and the importance of an undetected viral load in the context of sexuality Regarding complications, resistance, side effects, long-term toxicities, and comorbidities, PLWH are counseled individually [ 30]. Modula & Ramkumba (2018) [ 31] onfirm that more than 50 percent of PLWH suffer from mental health problems and recommend the implementation of mental health screening programs. Maintaining stable ART adherence is the goal for personal and global treatment success (UNAIDS 90-90-90 goals) [ 32]. The person's lifestyle, internal doubts regarding treatment, rejection of the diagnosis, and the new reality can be barriers to ART success and must be evaluated in advance [ 33].

Side effects are only described in the initial phase of ART [ 34]. This was not confirmed by most of our interviewed participants; on the contrary, side effects were hardly mentioned.

ART's occupational integration continued workability and a reduction in sick leave guarantee job retention and reduce material threats to livelihood [ 35]. Further, the appearance of good health mitigates HIV-related stigma and provides the respect to "live normally" [ 34].

HIV-induced stigma and discrimination have a high prevalence worldwide. The consequences of HIV-related stigma and discrimination are far-reaching and include delays in seeking HIV testing, denial of access to health care facilities, and non-disclosure of the HIV status [ 36]. PLWH suffer rejection, isolation, and emotional distress [ 37]. Not only patients but also HCPs, especially in areas with a high HIV prevalence, face discrimination in their work environment [ 38].

Stigma in health care settings is a barrier to ending the HIV epidemic [ 39]. Further, HIV-induced stigma has been shown to trigger psychological distress and low self-efficacy and negatively impact adherence [ 40]. PLWH interviewed in our study were unable to confirm negative effects on adherence from experienced stigma and discrimination. Moreover, AIDS stigma interacts with HIV prevention [ 41]. Internalized stigma, or self-stigma, occurs when a person takes the negative beliefs and stereotypes about PLWH and begins to apply them to themselves [ 42].

Discrimination is managed by PLWH by remaining anonymous and discreet in their daily lives. If HIV-induced stigma negatively impacts adherence, stigma management strategies become necessary [ 43].

Outing the diagnosis is a requirement of the PLWH interviewed in our study and at the same time, is directly related to the fear of stigma and discrimination, rejection, and disappointment. However, the association between voluntary and involuntary outings and medication adherence has been demonstrated [ 44]. Our study confirms that the disclosure of an HIV diagnosis only occurs under the condition of a high level of trust, in the relationship with the partner, friendship, or family. It was confirmed that HIV has little relevance from a PLWH perspective, and for this reason, anonymity and discretion are preferred [ 45]. Gabbidon et al. (2020) [ 46] escribe a decision-making and outing process with HIV self-disclosure. Studies confirmed relationship quality as a determinant of risk and resilience factors in the disclosure process of HIV infection. The HIV disclosure is also associated with the risk of emotional abuse of the person [ 47]. Also concerns about unintentional outings are high overall [ 48]. Bogart et al. (2008) [ 49]. describe that parents of HIV-positive relatives especially feel stigmatized and try to prevent outings.

Disclosing HIV to MSM is problematic in the family setting because homosexual sex practices are stereotyped and associated with HIV infection [ 50].

Additionally, it was confirmed that women, because of increased vulnerability, are more fearful of HIV disclosure, but more likely to choose to talk about HIV with their families and overall than men [ 51]. HIV disclosure is particularly relevant when sexual partners change frequently, especially when U=U cannot be guaranteed [ 52]. Also confirmed is that the concealment (outing is not an option) of HIV is higher among heterosexual men than women, and this circumstance does not impact psychosocial health and ART adherence [ 53]. Greater social acceptance makes it easier for PLWH to live openly with their disease [ 54]. Studies show that policies addressing stigma against LGBTQ+ people are significant structural determinants of the HIV risk in Europe [ 46].

Furthermore, it is affirmed that to combat HIV-induced stigma and discrimination, evidence-based interventions are needed to reduce HIV prevalence (Greenwood et al., 2022).

Further research aimed at developing appropriate evidence-based interventions to reduce stigma and discrimination is recommended.

5. Limitations

There are several limitations to this study. (1) Due to heterogeneity, not all affected groups with HIV/AIDS could be included. (2) The geographical distribution of the interviewed patients was chosen according to the possibility of field access. (3) Only German-speaking participants and no PLWH with a migration background were included. (4) Another limitation is the self-reported assessment of adherence and quality of life. Due to the small number of respondents, no generally valid statements can be made regarding the QoL. (5) No conclusions can be drawn for non-industrialized countries. (6) There were significantly more men than women because women were more difficult to recruit than men.

6. Conclusions

The chronicity of HIV is characterized by the determinants of a very well-tolerated therapy, the integration of HIV into private and professional everyday life without adjustment efforts, and the achievement of a high quality of life. Coping with the diagnosis still has a major part in dealing with the overall situation. Stigmatization and discrimination are still the main aspects that have to be addressed. In addition, addressing structural discrimination and stigma has an impact on prevention and reducing HIV prevalence. Support services in health care facilities should increasingly include these issues in their counseling services.

Author Contributions

Conceptualization, H.B.; methodology, H.B.; software, MAXQDA 2022.; formal analysis H.B.; data curation H.B.; writing-original draft preparation, H.B.; writing-review and editing, R.K. and T.E.D.; visualization, H.B.; supervision, R.K. and T.E.D. All authors have read and agreed to the published version of the manuscript.

Funding

This research received no external funding.

Institutional Review Board Statement

The study was conducted in accordance with the Declaration of Helsinki, and approved by the Ethics Committee, Medical University of Vienna, EK/Nr: 1610/2019, 30.07.2019.

Data Availability Statement

Data is not available due to privacy and ethical guidelines.

Conflicts of Interest

The authors declare no potential conflict of interest concerning the research, authorship, and/or publication of this article.

References

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# data[].attributes.attachment_link.title
People Living with HIV and AIDS: Experiences towards Antiretroviral Therapy, Paradigm Changes, Coping, Stigma, and Discrimination-A Grounded Theory Study

# data[].attributes.attachment_link.description
Background: The experiences in coping with HIV/AIDS from people living with HIV (PLWH) in Austria, Munich, and Berlin regarding adherence, antiretroviral therapy (ART), stigmatization, and discrimination were the main focus of this study. Therapy adherence is the cornerstone for PLWH to reduce disease progression and increase life expectancy combined with a high quality of life.

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Maybe they had a bad day: how LGBTQ and BIPOC patients react to bias in healthcare and struggle to speak out

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Maybe they had a bad day: how LGBTQ and BIPOC patients react to bias in healthcare and struggle to speak out

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This article outlines the issue of discrimination as a barrier to effective patient-provider communication and seeks the fill the research gap on lived experiences of marginalized groups in healthcare. They found that BIPOC and LGBTQ+ individuals struggle to cope and speak out, the researchers identify 3 paths for intervention, improve provider behaviour, support patient advocacy, and address power dynamics in healthcare (Apodaca et al., 2022). This research is important, especially in today's sociopolitical climate where LGBTQ+ rights are under attack, the one place people need to feel safe is in healthcare.

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Maybe they had a bad day: how LGBTQ and BIPOC patients react to bias in healthcare and struggle to speak out

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AbstractObjective. People who experience marginalization, including Black, Indigenous, People of Color (BIPOC) and Lesbian, Gay, Bisexual, Transgender, Que

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LGBTQ+ Health and History: We Need to Know

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LGBTQ+ Health and History: We Need to Know

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Beichler, H., Kutalek, R., & Dorner, T. E. (2023). People Living with HIV and AIDS: Experiences towards Antiretroviral Therapy, Paradigm Changes, Coping, Stigma, and Discrimination—A Grounded Theory Study. International Journal of Environmental Research and Public Health, 20(4), 3000. https://doi.org/10.3390/ijerph20043000

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A blind spot in mental healthcare? Psychotherapists lack education and expertise for the support of adults on the autism spectrum

# data[].attributes.subject
A blind spot in mental healthcare? Psychotherapists lack education and expertise for the support of adults on the autism spectrum

# data[].attributes.body
Most adults with autism experience mental health struggles, however, most psychotherapists do not have the knowledge or expertise to treat people who have mental health implications as well as autism (Lipinski et al., 2021). This leaves a large group of people who don't have access to mental health services and care. The study discovered and established this gap, many of the psychotherapists that participated were interested in expanding their knowledge in order to treat those who have autism and mental health disorders (Lipinski et al., 2021). I included this paper because of an experience in my mental health placement with a patient who had both autism and mental health disorders, communication was strained and interactions between practitioners and patient were stiff and not very effective. Expanding the knowledge of practitioners is important to be able to treat a wide variety of patients.

# data[].attributes.attachment_link.title
A blind spot in mental healthcare? Psychotherapists lack education and expertise for the support of adults on the autism spectrum - Silke Lipinski, Katharina Boegl, Elisabeth S Blanke, Ulrike Suenkel, Isabel Dziobek, 2022

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Most adults on the autism spectrum have co-occurring mental health conditions, creating a high demand for mental health services – including psychotherapy – in…

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‘You’re on the waiting list’: An interpretive phenomenological analysis of young adults’ experiences of waiting lists within mental health services in the UK

# data[].attributes.subject
‘You’re on the waiting list’: An interpretive phenomenological analysis of young adults’ experiences of waiting lists within mental health services in the UK

# data[].attributes.body
There are countless youth on waiting lists for mental health services in the UK. This study uncovered that this extensive waiting is leading to negative outcomes, exacerbating physical and psychological health issues, many patients feel that these waiting lists are barriers to care (Punton et al., 2022). This research is vital to understanding the dangers of waitlists for mental healthcare, I included this article because I've seen similar circumstances in Canada. I have a very dear person in my life who has struggled to gain access to mental healthcare, and many more patients who if they had received care earlier they may not have ended up in the hospital.

# data[].attributes.attachment_link.readable_text
Georgia Punton,

Alyson L. Dodd,

Andrew McNeill

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Abstract

Waiting lists in mental health services are currently considered too long. Lengthy waits of up to 18 weeks are commonly reported in the UK. Waiting lists have long been associated with a variety of negative psychological responses, however there is little understanding behind young adults' personal experiences of such delays within mental health services. The current study aimed to explore young adults' experiences of waiting lists in mental healthcare in the UK. Seven young adults were interviewed in the current study (aged 19-22). Interpretive phenomenological analysis was utilised to explore participant accounts. Three super-ordinate themes were generated: Reliance on Alternative Methods of Support; Inability to Function Sufficiently; and Emergence of Negative Beliefs, Emotions and Thoughts. Participants primarily reported a variety of negative psychological and behavioural consequences associated with waiting lists in mental health services, as well as exacerbated existing physical and psychological health issues. In accordance with the limited number of previous studies, waiting lists are considered by patients to be barriers to mental health support and intervention. Future direction is advised.

Citation: Punton G, Dodd AL, McNeill A (2022) 'You're on the waiting list': An interpretive phenomenological analysis of young adults' experiences of waiting lists within mental health services in the UK. PLoS ONE 17(3): e0265542. https://doi.org/10.1371/journal.pone.0265542

Editor: Steph Scott, Newcastle University, UNITED KINGDOM

Received: June 23, 2021; Accepted: March 3, 2022; Published: March 18, 2022

Copyright: © 2022 Punton et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: Available data: https://osf.io/cafhd/ (DOI: 10.17605/OSF.IO/CAFHD) The current data in its raw format (verbatim transcripts) contain both potentially identifying and sensitive participant information (e.g., detailed discussion of diagnoses, coping mechanisms, mental health concerns, geographical location of residency/treatment). It would also be of concern should participants self-identify as their signed consent did not state to share this information in its entirety. However, cleaned data in the form of extracted quotes and analysis procedure has been uploaded on a public repository at https://osf.io/cafhd/. Here, it is possible to also see theme generation via accompanying quotes taken directly from the raw data. The researchers will still encourage any individuals interested in the raw data to request it from either the corresponding author ( georgia.punton@northumbria.ac.uk), the Ethics Director or the Data Protection Officer at Northumbria University (listed below). Ethical approval was given by the Northumbria University Undergraduate Ethics committee. To contact the Ethics Committee responsible for this project, see Prof. Nick Neave, Director of Ethics at Northumbria University: nick.neave@northumbria.ac.uk. The Data Protection Officer at Northumbria University (the Data Controller) is Duncan James ( dp.officer@northumbria.ac.uk).

Funding: The author(s) received no specific funding for this work.

Competing interests: The authors have declared that no competing interests exist.

Introduction

Waiting lists organise and co-ordinate numbers of people requiring a service that is in high demand. Due to a lack of funding and resources, demand for the UK's National Health Service (NHS) is growing, which has led to longer waiting lists [ 1, 2]. Concerns have emerged regarding how this will impact the physical and psychological wellbeing of patients, especially in mental health services where waiting lists remain consistently long [ 3].

Within mental healthcare systems, long waiting lists have been observed for accessing psychological therapies, such as counselling or cognitive behavioural therapy (CBT) [ 4]. To address these concerns, NHS England implemented waiting list standards in 2016 as part of the Improving Access to Psychological Therapies (IAPT) programme, with the target of 75% of referrals for psychological interventions to be assessed and treated within six weeks, and 95% within 18 weeks [ 5, 6]. Despite a recent IAPT report suggesting that these standards are being met [ 7], 'hidden' delays for treatment sessions still remain extensive, with 50% of overall referrals in certain areas of the UK waiting for up to 162 days (23 weeks) to receive both an initial consultation and a secondary follow-up session [ 4]. Furthermore, over 100,000 patients who require treatment withdraw from this programme before completion each year, and such attrition within mental health referrals has been considered to be linked to these longer waits for treatment and between sessions [ 3]. This is consistent throughout the UK, with more than a third of Scottish child and adolescent mental health service (CAMHS) patients and a fifth of adult mental health service (AMHS) patients waiting longer than the 18-week target [ 8, 9]. Similar unmet target times have been observed in Northern Ireland and Wales [ 10].

Regardless of new guidelines, waiting lists in mental health services continue to be described as 'too long' for those with mental health issues due to their vulnerability and need for immediate care [ 10, 11]. These long waits are often reported by patients directly, who state that waiting lists act as a barrier to help-seeking across both CAMHS and AMHS [ 12, 13]. Long waiting lists are also faced by those transitioning from CAMHS to AMHS [ 14]. Individuals within this transition period face hardship at this pivotal stage, including feelings of abandonment, struggling to cope without continued care, and 'not feeling ready' to move onto AMHS [ 15], which may be exacerbated by these long waits.

Student populations seeking support from university mental health services also report long waiting lists [ 16]. Students are often signposted to these services prior to, or during NHS referral, and may assume they will be seen sooner than other services. However, many university services have poor staffing ratios and lack sufficient funding to meet demand [ 17].

Waiting lists have been associated with negative psychological and physiological responses such as anxiety and stress; more uncertain, unexpected and longer waits lead to further aggravation of these symptoms [ 18, 19]. Such effects are exacerbated among those awaiting health-related news or treatment due to the potentially severe implications of delays [ 20]. Within general healthcare, patients waiting for diagnosis, surgery or treatment experience increases in negative affect, including anger, frustration, fear, stress, anxiety and depression, as well as reduced self-esteem, which worsened the longer they waited [ 20, 21].

These effects are mirrored within patients awaiting mental healthcare, where reports state that perceived uncertainty and lack of support due to longer waits led to reduced functioning, prolonged emotional distress, exacerbation of existing symptoms [ 22] and poorer outcomes across a range of domains [ 23]. Some findings suggest higher rates of suicide or suicide-related hospitalisations [ 24], emphasising the serious implications long waiting lists could have upon those with mental health issues.

Additionally, longer waits have also been associated with greater drop-out and disengagement once intervention begins [ 25], possibly reflecting a lack of trust in the service and reduced motivation to participate [ 26]. In turn, poor therapeutic engagement is associated with mental health deterioration and a greater chance of future hospital admission [ 27]. Excessive waits in public services also lead to greater demand for private intervention for access to support sooner [ 13, 28, 29].

While there is some evidence to support the barriers to mental healthcare and the implications of not receiving said care [ 30] there is little empirical research which specifically investigates the consequences of waiting lists for these services in the UK from the perspective of those facing them. Young adults aged 18-25, who are seeking mental health support from AMHS or IAPT, may be particularly affected by lengthy waiting times. Young adults face new responsibilities and experiences as independence and a sense of self is established. Such transitions in life can be difficult, and have been linked to decline in mental health and wellbeing [ 31]. Considering that the age of first onset for many mental health disorders is within this young adult demographic [ 32], it is important to understand how waiting lists may influence help-seeking and engagement with UK services.

Therefore, the current study aimed to explore the experience of facing waiting lists for mental health services by those who have recently sought psychological intervention in the UK. By employing a qualitative design, the objectives of this research are to understand the consequences of these delays by investigating individualistic experiences using Smith's [ 33] interpretive phenomenological analysis (IPA). The research questions were:

1. How do young adults seeking psychological interventions make sense of their experiences of waiting lists in mental health services?

2. How do young adults cope with being on a waiting list for mental health services?

Methods

Research design

IPA was applied for a rigorous, double-hermeneutic exploration of participant's understanding of their own experiences [ 34] as informed by Heidegger's phenomenology [ 35]. This method is widely used in health psychology research due to its idiographic emphasis of participant's phenomenological experience, as well as the acknowledgement of the importance of the researcher's reflexive interpretation [ 34]. To balance these requirements while exploring this lived experience, the researcher approached IPA from a contextualist position as characterised by critical realism.

Participant sample and recruitment

Purposeful sampling was employed to ensure adherence to the inclusion criteria, which were: (1) to have experienced a waiting list when seeking psychological mental health support lasting at least six weeks, aligning with IAPT's guidelines of waiting list standards [ 5]; (2) experienced this wait within the last three years; (3) be aged between 18 and 25. Recruitment was conducted using posters and leaflets placed around a university campus and through social media posts. Interested individuals were sent an online screening questionnaire to ensure demographic information and eligibility (e.g., 'how long were your waiting for mental health treatment from time of referral?', 'how long ago were you referred?').

A final screened sample of seven participants was obtained. Smaller, more concise samples are common in IPA studies to allow for more in-depth interpretation, rather than superficial understanding which may accompany a more diverse sample [ 33]. This sample consisted of five women and two men. They were all aged between 19 and 21 during their wait ( mean age = 20), and between 19 and 22 at the time of interview ( mean age = 20.5) and all waiting lists lasted between 6 and 47 weeks ( mean length = 16 weeks). All participants were students at university and were located in the North East of England, West Midlands or Scotland during their wait. Varying mental health concerns were represented, including anxiety, depression, bipolar disorder, and OCD. Across the sample, participants were waiting for a range of interventions, including counselling, CBT and psychiatric review.

Peer-interviewing was employed, as the primary researcher (GP) was of a similar age and a student at a UK university with training in conducting semi-structured interviews.

Data collection procedure

Ethical approval was obtained from the Northumbria University Undergraduate Psychology Ethics Committee (ref: 12288). An initial pilot interview was conducted to evaluate the initial interview protocol, observe the depth of the discussion, and identify any redundant questions or changes required. This interview was not included in the final data.

Potential participants were asked to provide informed consent and then complete an online survey asking for demographic information (e.g., age, sex and gender identity) and to screen for their eligibility. Individual, in-person interviews were then arranged and conducted in a private room at a university. Consenting participants were asked a total of seven open-ended questions (i.e., 'Why did you initially seek professional mental health support?'; 'Can you tell me about the delays or waits that you faced?'; 'How did this delay of support impact your life?'; 'Would you say this delay in support had any kind of positive impact?'; 'How did you end up coping during this time?'; 'If you were to experience another waiting list for mental healthcare, how might you approach it?'; 'What do you think could be done to assist with the growing issue of long mental health waiting lists?'). The structure of the interview was flexible, however, numerous prompts and probes were implemented within each interview to assist with the collection of detailed data. Participants were debriefed and provided information for both university and UK mental health services in case of lingering distress (e.g., University Nightline Services, Samaritans, Mind). Interviews lasted between 32 and 50 minutes ( mean length = 37 minutes).

Audio recordings of the interviews were transcribed verbatim by the researcher to allow for the maintenance of context and meaning of the participant's experience [ 34]. Names or identifying features were redacted for anonymity. Recordings were revisited to correct any initial transcription errors.

Data analysis procedure

Data were analysed using a flexible application of IPA [ 36]. The aim for the analysis was to generate, categorise and organise any potential themes as observed within the data while carefully considering the unique experiences of each participant. Firstly, transcriptions were read while simultaneously listening to the original audio recording to allow for complete immersion in the participant's narrative. Individual transcripts were analysed by annotating and commenting on the dialogue and its semantic and latent content. Comments and annotations were then analysed to identify potential codes, emergent themes, and connections for each individual transcript, before ordering these themes into preliminary associated clusters charted based on their prominence. Initial themes were then further organised into succinct secondary emergent themes, and finally, three higher-order super-ordinate themes. To ensure rigour and respondent validation, all participants were contacted for a member check to evaluate how accurately they felt the final themes portrayed their experiences. Responses from all seven participants led to minor adjustments and a final classification of three super-ordinate and five sub-ordinate themes, and these were verified once again by participants to accurately reflect the overall experiences. Therefore, the final themes were not included based solely on prevalence within the data and attempted to encompass the rich, diverse and complex experiences from the perspective of the participants [ 36].

Role of the researcher

At all stages, the researcher (GP) aimed to engage in reflexive practice and implemented strategies to ensure quality and trustworthiness throughout data collection, analytical interpretation and within the general methodology. Firstly, the interview questions were continuously scrutinised and peer-reviewed by a senior researcher (AD). Additionally, constructive feedback and direction on the analysis procedure was provided by a senior researcher (AM), and final themes were also peer-reviewed and challenged (AD). Additional commentary was sought from participants via member checking as to validate findings among the sample themselves [ 37, 38]. Such feedback allowed for credibility and rigour to be ascertained across researchers [ 39], while also prioritising the voices of the participants. Primarily, it was important to certify that the analytic process did not remove the initial context derived from lived experience from the final themes. A common phenomenological practice to mitigate this is bracketing, where a researcher separates from their own preconceptions and understanding of a phenomena before engaging with participant accounts [ 40]. However, being interpretive in nature, IPA does not require, nor assume fully reductive focus, and therefore, the researchers attempted to balance this technique with personal interpretation through the use of empathetic and open reflection upon preconceptions and biases, without bracketing them entirely [ 35, 41]. Finally, as a peer, the primary researcher had insight to understand the life-circumstances of participants and how mental health interacted with their lives.

Findings

Three super-ordinate themes were formed during the analysis, which all participants expressed in some form: Reliance on Alternative Methods of Support (T1); Inability to Function Sufficiently (T2); and Emergence of Negative Beliefs, Emotions and Thoughts (T3). Two of these super-ordinate themes overarched five overall sub-ordinate-themes ( Table 1).

Reliance on alternative methods of support (T1)

Reliance on alternative methods of support (T1) was formed as a super-ordinate theme in response to the lack of support available while on a waiting list. All participants expressed a need for various forms of additional help while waiting.

Seeking alternative intervention (T1.a).

Nearly all participants sought alternative intervention (T1.a) while waiting for intervention. This mainly consisted of additional psychological treatment or medication.

'I was able to come to terms a lot more with a lot of the stressful things that I wouldn't have been able to do without the medication, but I still think therapy would have been more beneficial to me'

-Beth (woman, 21).

'I initially started on anti-anxiety medication, which overall did have a positive effect, but I was very reluctant to at the time... the sense of not having help, especially due to not being able to afford it, not being able to access the free stuff makes you feel lost, or that you don't have any help available'

-Luke (man, 20).

While participants disclosed that medication was effective in reducing their symptoms, some shared that this was often different to the psychological intervention they felt was right for them initially. This coincides with previous findings, which have found that some people might take medication or another form of treatment because their preferred form of intervention is not available [ 29, 42]. Luke states that he felt lost with no help available, which could explain why he ended up opting for anti-anxiety medication, despite initial reluctance; his need for intervention surpassed the desire to avoid pharmaceuticals, and conveyed desperation for improvement in his mental health regardless of intervention. Furthermore, Luke's reference to feeling lost given his inability to access the 'free stuff' highlights the constrains of his economic situation and how this impacts his perception of managing his mental health. He sees 'the free stuff' as the only option and the only alternative is to 'feel lost', or to take any available alternative. The growing body of help-seeking literature states that many with mental health concerns avoid interventions until their situation becomes desperate and they are no longer able to manage it themselves [ 43, 44] and given the current strain on mental health services, medication might be the only immediate viable option. This might also influence participants' decision to try other routes.

'they said to me at the doctors the waiting list is so long it's probably best to start with your uni and see your uni wellbeing team... the thing is you can get like six [sessions] per semester. It's not enough... sometimes you're waiting quite a few weeks, whereas sometimes they'll be like oh we're free tomorrow'

-Hannah (woman, 22).

'I decided to go private due to worsening symptoms, in part due to the waiting list [12-18 weeks], in part due to just mental health situation... I enjoyed it but it quickly became too expensive for me to sustain.'

-Luke.

Hannah recalls the doctors advising her to seek help from external sources. Hearing this from official, trusted sources of support conveys helplessness and uncertainty from percieved support providers over the duration of the waiting lists, and prompted her to seek alternative support. Free alternative services, such as university mental health services, also tend to be limited in session availability and continue to have issues with inconsistent long waits due to high student demand [ 16]. Additionally, longer waiting lists in public healthcare are associated with greater purchases of private therapies and insurance [ 28, 45]. However, private therapies are costly, especially for young adults, who might not have a permanent career or who are students in higher education.

While there are alternative interventions for young adults, these are more percieved as temporary solutions with quicker access to sustain individuals before they are granted psychological support.

Development of coping mechanisms (T1.b).

Some participants also developed coping mechanisms (T1.b) while placed on waiting lists. Both adaptive and maladaptive behaviours were disclosed.

'I took up meditation as well... that definitely helped me relax and kind of take a step back and chill out' -

Matt (man, 20).

' I really want to get into yoga because I know that will help, I know that's really good for your mind and I really want to get into mindfulness and meditation. I used to do that for chronic back pain and it did help'

-Hannah.

Some participants relied on coping mechanisms such as mindfulness and meditation while waiting for further intervention; Hannah showed an awareness that engaging in these practices would be beneficial, and related this to previously coping with physical health concerns, although was yet to implement them. Such techniques are standard and effective when managing stress and anxiety independently [ 46], and have also allowed individuals in adverse situations to cope more adaptively and constructively, boasting long-lasting benefits in a variety of healthcare settings [ 47]. It is not surprising that individuals would adopt such techniques to assist during the wait for mental healthcare, however, depending on the mental health concern, some people might find mentally engaging in adaptive practices difficult, despite knowing their potential benefit [ 48].

An additional finding was expressed by participants who held the perception that their background knowledge of their circumstances allowed them to understand and deal with the corresponding symptoms.

'as a psychology student, you understand that it's just an irrational thought'

-Lucy (woman, 21).

'being like a psychology student, it's so easy to be like, this is what I need, but I wanted them to tell me what I need rather than to tell myself'

-Hannah.

Lucy and Hannah's reflection on their experience supports past literature, which has found that psychology students with personal experience of mental health issues have high mental health literacy [ 49]. Mental health literacy, has been seen to improve help-seeking and promote the development of adaptive coping mechanisms [ 50, 51]. Therefore, perhaps those who have a deeper understanding of their issues as attained through their academic or personal life can manage such concerns more appropriately. Despite this insight, Hannah still expressed a need for validation of her experiences from an authoritative figure, suggesting that the acquisition of knowledge alone is likely inadequate. To futher this point, Lucy did manage to attain some reassurance and clarification from a professional in the form of a diagnosis.

'someone said, I think you have like generalised anxiety; I was like right I'm not going mad... the wait did me some good but maybe like I say, not that long of a wait. '

-Lucy.

She found her diagnosis helped her to rationalise that she was not 'going mad'. However, before participating in CBT, Lucy stated that she needed time to process her recent diagnosis of general anxiety disorder. Diagnostic labelling can lead to feelings of relief and elation for some, as those seeking support receive professional acknowledgement and justification for their disorder [ 52]. The diagnosis itself helps patients to cope and further allows for a brief period of self-reliance before further intervention is required. Yet, it is important to note that some might perceive a diagnosis as unhelpful, given that negative stereotypes might lead to self-stigmatisation and lowered self-esteem, which can facilitate self-fulfilling effects in the form of worsening symptoms [ 53]. Additionally, the waiting list was still too long for Lucy, suggesting that prompt treatment should still be prioritised.

Not all coping mechanisms were constructive, with many participants taking on more destructive behaviours.

'I was so unwell in my head, that it became oh, well I need to become bad so that they believe me, they need to see how bad it is. So, there was a lot that pushed me to self-harm during that time... it definitely added to the destructive nature of my [bipolar] disorder because there was so much frustration and you either take it out on other people or on yourself, and I took it out on myself. '

-Amy (woman, 20).

Self-harm is consistently linked to other mental health issues such as depression, bipolar disorder and schizophrenia [ 54], however, the delay that Amy was facing further exacerbated the destructive tendencies of her disorder. From her perspective, this was for both the purpose of releasing frustration, but to also express the critical nature of her situation to those who could grant her help (see T3.a). Those with mental health disorders are at much higher risk of self-harming as a coping mechanism [ 54], therefore participants' frustration combined with delayed intervention seemed to exacerbate self-harm risk and lead to physical and mental detriment. Similar to Hannah, Amy also sought professional validation and reassurance, but further stresses this 'need to be believed'. Given her desperation for support and her distress at the time, she percieved self-harm as a viable way to be attain help in a maladaptive form of help-seeking, or as a 'cry for help' [ 55]. Self-harm is also reported as a way for individuals to maintain control over a situation [ 56], and because waiting (particularly for health-related support) is considered an uncontrollable circumstance [ 20, 21], it could be interpreted that Amy's use of self-harm was to regain a sense of agency in an increasingly uncertain and distressing situation.

'I turned to smoking marijuana and drinking alcohol quite frequently... that was the worst point of my mental health decline because I didn't have any help. '

-Luke.

For Luke, maladaptive coping also manifested in the form of substance use. These methods were potentially approached as short-term solutions, especially as substance use has been considered a likely coping mechanism throughout mental health literature [ 57]. Qualitative research has found that perceived barriers to support, such as access to services, might encourage substance use as a substitute for professional intervention in students [ 58]. As those with mental health disorders display a pre-existing vulnerability to maladaptive strategies [ 59], this demonstrates the urgency for those with psychiatric disorders to receive mental healthcare, lest they reinforce destructive methods of coping, especially in such high-risk cases as bipolar disorder.

Reliance on social support (T1.c).

All seven participants expressed their reliance on social support during the delay (T1.c) by depending on family, friends and others to provide psychological support.

'I needed the support sooner rather than later, and I'm lucky that I had friends and family and stuff there for me'

-Beth.

'My friends especially helped in ways that I wasn't expecting them too. I knew my girlfriend very well and that she would be supportive, but I didn't realise there was a big support structure in my friends. Once that was established it was a lot easier to deal with and I ended up, despite being on the waiting list, not needing intervention. '

-Luke.

Social support has been consistently reported as a means for people to manage their symptoms and mental health issues [ 60]. Literature continuously finds that those with better social support systems, or who receive greater attentiveness from close relations suffer from less mental distress [ 61]; social support commonly acts as a buffer which can moderate the development of both mental and physical disorders [ 62]. Interestingly, while Beth was aware of the support she had available from her friends and family, Luke was unaware of his support structure in the beginning. Research has found that while women are relatively open with their mental health needs among their peers, men report having difficulties in reaching out for social support [ 63], particularly among other male peers, and thus, might only disclose their emotional needs during times of distress [ 64]. Yet, once established, Luke found that this reliance on his friends seemed to contribute towards his eventual withdrawal from further treatment from public services, supporting the need for fostering positive support systems to help mitigate the impact of long waits. Particularly, Lucy looked to her close relations to reframe her thinking.

'My Dad'll go more of the logical way around it, whereas I'm really emotional-based, so I've gone with, no think about how maybe my dad would say it and how he'd see it. '

-Lucy.

By observing her father's processing style, she was able to comprehend her anxieties and rationalise them before they escalated. Social observation is considered a way for those with mental health issues to understand their own experiences, through modelling and imitating the behaviours of others and adapting them as their own [ 65]. Therefore, Lucy was able to conduct this social learning mechanism based on her father's behaviour to help her manage her irrational thoughts while she was waiting for psychotherapy. This could suggest that close relations are relied on for more than just support during delays, but to also help amend negative thinking patterns or aberrant behaviours.

Finally, an important observation was the repercussions that the waiting list had upon the family and friends of those seeking help.

'While I was on the waiting list I wasn't in anybody's care... it became the responsibility of the people around me... the people who put me on the waiting list didn't say to my family, oh, okay so this is what you need to do in the meantime, they were just totally left. '

-Amy.

Amy describes how the delay negatively affected her family, as they were required to care for her due to the lack of intervention from services. The families of those with mental health issues commonly report that they receive little support from mental health services and are usually left to deal with the situation without guidance [ 66], suggesting that the consequences of waiting lists extend beyond the individual seeking the help, to also affecting the wellbeing of close relations. This shifting of responsibility from service to family in these times of uncertainty might also facilitate further problems for the individual, as young people especially seem to see themselves as a burden to those close to them [ 67]. By stating 'the people who put me on the waiting list', Amy percieves that those who referred her have capacity to do something and that capacity should be employed in equipping others, even if they themselves are unable to help.

Inability to function sufficiently (T2)

The second super-ordinate theme presented an inability to function sufficiently (T2). This illustrates the concern that delays in mental health support interfered with day-to-day life, as well as physical and mental functioning.

Decline in mental state and existing symptoms (T2.a).

It was reported that delays in mental health treatment seemed to exacerbate existing symptoms of participant's mental health issues (T2.a). This was expressed by all participants, with varying degrees of severity. One of the more common experiences was heightened anxiety and stress levels due to the uncertainty surrounding the delay and its length.

'It certainly worsened the anxiety for me personally because I felt more alone and more vulnerable to my own mind... it's not knowing that there's any definitive end to it. '

-Luke.

Previous research suggests that uncertainty is commonly associated with stress, anxiety and nervousness especially when applied to healthcare scenarios [ 21]; therefore, it is understandable that participants might experience a decline in mental health, or at least a shift from acute to chronic symptoms over time. All participants expressed their struggle with anxiety or anxiety-related symptoms while waiting, suggesting that this uncertainty might exacerbate existing mental health concerns.

'They've sort of come back with the response of like, you're not bad enough, and I think that's like, so dangerous because it pushes people to think, like, they're not taking me seriously. '

-Hannah.

'I was told 'you're not severe enough'... hearing you're not bad enough when you're at your absolute lowest it really just messes with your mind and you think okay, I'm not bad enough, time to get bad enough, so that's why I would self-harm and that's where the suicidal thoughts come in and like... just anything to be able to say at my next appointment: I did this, am I bad enough yet? I wanted to present from the outside how I felt on the inside. So, I stopped looking after myself physically. '

-Amy.

Additionally, participants stated that their worsening symptoms were due to perceptions of the services not believing their issues were severe enough to be seen sooner. Hannah and Amy again illustrate the impact of an authoritative voice, however, for Amy in particular being told that she were not severe enough for immediate treatment facilitated destructive behaviours with the intent of being seen quicker. For those suffering from mental health problems, this damaging experience accompanied by being delayed from mental health intervention is likely to bring about self-fulfilling behaviours intended to express the severity of mental state and bring about further decline to be taken seriously and receive treatment, either by adopting maladaptive coping mechanisms (T1.b) or by externalising how they feel mentally.

Impact upon lifestyle and physical ability (T2.b)

Almost all participants expressed that the delays they faced had a substantial impact upon their everyday activities, lifestyle and obligations (T2.b). This was mainly conveyed by their difficulty studying, attending lectures and committing to academic requirements.

'Because it took so long to get on the waiting list I then had to move back home... I was no longer safe to be left by myself and then I had to defer uni because the care took so long to get into place... my GP didn't always have appointments and when they did, I was just told, you're on the waiting list there's nothing more we can do. '

-Amy.

Amy made it clear she left university due to the delay of psychological support, as she was no longer safe to be left on her own without observation. While past research has found that students with mental health issues are more likely to drop out of higher education [ 68], what ultimately influenced her decision to leave university and move back home was her inability to single-handedly manage on the waiting list, despite continuously attempting to receive help. This left her vulnerable and needing to seek help from her family (T1.c), and highlights the disadvantage experienced by those with mental health issues.

'the reason I wanted the help is because it's my final year of uni... I want to aim as high as I can but I feel like it's holding me back because I'm not getting help. '

-Hannah.

Participants regularly stated that their mental health issues caused them to feel more unmotivated, stressed and disconnected in terms of their university experience, and further indicated that the delays they were facing exacerbated these issues and caused greater complications with academic success. Previous research has suggested that mental health issues and associated stressors are associated with poorer educational enjoyment, productivity and academic performance [ 68]. Therefore, further stress caused by these waiting lists for psychological intervention could be presumed as yet another obstacle impeding academic success, progress and fulfilment.

In addition to university, many participants expressed issues with completing everyday tasks and basic functioning.

'I had to call in sick for work sometimes. I couldn't eat, I couldn't shower, I just couldn't physically get out of bed which just stopped me doing everything'

-Luke.

'I didn't shower, I didn't get out of my bed because I thought in my head I thought maybe if I stay in bed long enough someone will come and section me and then I'll get help'

-Amy.

Luke expressed helplessness as he was unable to physically undergo any of his normal everyday activities, as is diagnostically common in those with mental health disorders. He found that these issues grew more prominent due to the waiting list he was placed on, again suggesting that delays in mental healthcare might not directly cause these negative outcomes but exacerbate them. This was also presented by Amy, however, her inability to function seems to be driven by the desire to be provided with treatment as soon as possible. As mental health services tend to prioritise more serious cases [ 69], by neglecting to physically care for herself, Amy was aiming at being seen as a priority. She further explained the desperation behind her actions and expressed that her irrationality was triggered by the waiting list. And so, uncertain delays can influence irrational help-seeking behaviour which is detrimental to an individual's physical and mental functioning.

Additionally, some participants also expressed the impact the delays had upon their pre-existing physical conditions as well as their mental health.

'I've got stress incontinence and arthritis and they're always worse when I'm stressed... my arthritis flared up, so I was struggling. '

-Beth.

'I'm quite anaemic, my iron is really depleted at the minute because I've not been eating as well, so that makes me more tired and less motivated than I was, so I think it's like a chain reaction'

-Hannah.

Stress brought on by the delay in treatment caused both Beth and Hannah's health issues to deteriorate to the point where their everyday function was impaired. Hannah likens this relationship to a 'chain reaction', which perhaps suggests that the delay in treatment triggers corresponding negative effects upon both her mental and physical health. The contents of these extracts are supported by the mass of literature signifying the strong association between stress, health problems and physical decline, with long-term stressors being associated with a variety of physical issues [ 70]. Therefore, being exposed to the long-term stress of waiting lists may cause further decline in pre-existing physical health conditions.

Emergence of negative beliefs, emotions and thoughts (T3)

The final super-ordinate theme formed was the emergence of negative beliefs, emotions and thoughts (T3) participants experienced while waiting for treatment. Participants commonly developed negative beliefs and readily described the strong emotions that they felt as a result of the delays.

'I feel more anger towards it than anything else. Some people will be like at long last, but for me it's like, it's about bloody time. '

-Alex.

'It does put a strain on a lot of things to know that some medical conditions can be seen so quickly, whereas it almost seems as though mental health isn't classed as the same sort of severity as physical. '

-Hannah.

Alex assessed their own anger as stronger than that of hypothetical others in the same situation. Comparison is a common way for those experiencing hardships to express the extent of their negative experiences [ 71] and is likely a way to convey desperation for the anticipated psychological intervention. As Alex also held the expectation that the waiting time was to be shorter, this could also have exacerbated their frustration. These expectations also seem to play a role in the emotional response of Hannah; previous experiences of timely care for physical health issues meant that she had similarly high expectations when seeking mental health support. This resulted in disappointment, and inevitably frustration, when this expectation was not met. This is described well by Jeronimus and Laceulle [ 72], who state that frustration "is elicited when a goal-pursuit is not fulfilled at the expected time in the behavioural sequence (an unexpected non-reward)" (p. 01). It is only understandable that those seeking mental health treatment are left frustrated when they initially assume prompt support. When these expectations are not met, it may also influence feelings or states of despair, or hopelessness.

'On the actual day of my suicide attempt it was like, I'm never going to get help, it's going to be like this forever. '

-Amy.

Amy's suicide attempt was seemingly associated with the belief that there was no end to the constant delays, and she would never receive intervention. Intrusive feelings of hopelessness are thought to be a risk factor for self-injury and suicidal behaviour, especially when paired with irrational beliefs [ 73]. Therefore, the negative emotions and beliefs which manifest due to these delays could be reinforcing harmful behaviours in those requiring mental health support. Feelings of hopelessness and corresponding irrational beliefs were reported consistently by all participants.

'I didn't deserve the help when I knew that I needed it. '

-Beth.

'I'm never going to get help so why help myself? '

-Alex.

This interaction between situation, belief and emotion can be explained by the ABC model of irrational beliefs [ 74], where an activating event, (i.e., being placed on a waiting list), could lead to a corresponding belief (i.e., 'I'm not bad enough'), and then to an emotional consequence (i.e., hopelessness or frustration). However, it has been suggested that irrational beliefs are external representations of biased schemas formed by individuals based on their subjective experiences [ 75]. These schemas can become increasingly prominent if a particular event or situation is considered detrimental, stressful, or if it occurs repeatedly; they can also influence negative affective appraisals, causing emotional responses to be somewhat contradictory given the reality of the situation [ 76]. Therefore, individuals experiencing a long waiting list for mental health treatment might develop or reinforce existing schemas, form irrational beliefs regarding their worth or their situation and appraise their emotions more negatively. Such irrational beliefs and emotions have been suggested to influence behavioural responses which may contribute to suicidal tendencies, the notion of 'getting worse to get help' or the development of maladaptive coping mechanisms [ 77].

Methodological considerations and limitations

The findings of the current study should be approached within the context of its methodological limitations. Despite not being an inclusion criterion, all participants recruited were students during their wait. Students make up a large proportion of the UK population between the ages of 18-25 [ 78], and have been found to be at a higher risk of developing mental health disorders than the general population [ 79]. Given that students are a highly specific demographic, it is important that this sample is broadened in future research to allow for the understanding of the consequences of these waiting lists among other groups. For example, it would be of value to explore the experiences of young adults outside of higher education. Unlike students, this group does not have access to additional institutional mental health support services which may act as a temporary buffer while waiting for intervention, and they also display different social support structures [ 80]. Considering these disparities in service access and existing support, it will be important to investigate this population to establish a more comprehensive understanding of young adult's experiences.

This study also implemented peer-interviewing, where the researcher was of similar age and circumstance to the participants (an undergraduate student). While the researcher consciously approached each interview with impartiality, it is important to acknowledge the potential problems that may have influenced participant responses, including bias, over disclosure by participants, or conversely, concern over judgements [ 81]. However, considering the sensitive content of this research, having existing rapport with participants likely fostered empathy and encouraged a more open and honest discussion [ 82]. Additionally, the primary researcher underwent interview training and continuously engaged in reflective exercises to help mitigate these issues and improve the quality of the data attained [ 81].

Implications and future direction

The current study has provided a preliminary understanding into the consequences of mental healthcare delays as experienced on an individual level. These findings currently sit among the foundations of this body of literature, and so, further research should continue with both qualitative and quantitative enquiry of the impacts of waiting lists within mental healthcare. One potential avenue could investigate the potential implications of individual differences within those on waiting lists. The present study indicated that waiting lists in mental healthcare are associated with a variety of negative consequences, including the development of maladaptive coping mechanisms and the emergence of negative or irrational beliefs. However, some participants expressed greater issue with the waiting lists than others, which may be due to individual differences, such as mental resilience, social support and lifestyle. There is clearly a need for more quantitative enquiry to explore potential factors that might influence individual's attitudes and help-seeking behaviours when long waits are present in mental healthcare.

Finally, the implications of these findings, although preliminary, align with the current body of literature which points towards a need for systemic development in the accessability and delivery of mental health services [ 29, 83, 84], particularly concerning further support provisions for those experiencing such delays.

Conclusion

The current study identified several detrimental consequences for young adults awaiting support for their mental health. While some participants attempted to reflect upon their experiences in a constructive manner, this was not without criticism. Furthermore, delays in treatment were found to exacerbate existing mental and physical health symptoms, and attempts to cope with these long waits ranged from adaptive to maladaptive strategies. Seeking out alternative forms of intervention was also reported, and young adults might opt for medication, private or university services to get support quicker and help sustain them while waiting for psychological therapies. Young adults also placed importance on seeking professional opinion and validation from authority figures in relation to their issues, even if they were aware and knowledgable of their symptoms. As increasing demand of mental health services leads to longer waiting lists, the current findings illustrate the need for systemic change, particularly concerning further support provisions for those experiencing delays for mental healthcare. Future research is also needed to understand how waiting lists might impact different populations.

Acknowledgments

We would like the thank the participants in this study for so kindly sharing their personal experiences and the reviewers for their insightful feedback.

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'You're on the waiting list': An interpretive phenomenological analysis of young adults' experiences of waiting lists within mental health services in the UK

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Waiting lists in mental health services are currently considered too long. Lengthy waits of up to 18 weeks are commonly reported in the UK. Waiting lists have long been associated with a variety of negative psychological responses, however there is little understanding behind young adults' personal experiences of such delays within mental health services.

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Quick snippet of what we will be covering!

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