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Paid caregivers are often unseen heroes who play crucial roles in the lives of those they care for. They come from all walks of life, with diverse backgrounds, experiences, and reasons for choosing this path. Let’s meet one of these dedicated individuals and explore their stories.

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Jane’s Story: Caring for My Mom with Alzheimer’s

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Jane’s Story: Caring for My Mom with Alzheimer’s

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Jane shares her deeply personal journey of becoming a paid caregiver for her mother, who has Alzheimer’s.

“My name is Jane, and I’ve been my mother’s caregiver since she was diagnosed with Alzheimer’s. Every day, I help her with bathing, dressing, and having breakfast. Although it’s challenging, I’ve found a new sense of purpose in caring for her. It’s hard work, but seeing her smile makes it all worthwhile.”

Jane’s experience illustrates the emotional rewards and challenges of caregiving, especially when the role extends to family. It highlights the resilience, patience, and love involved, showing that caregiving can be both a job and a deeply fulfilling personal commitment.

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Jane’s Story: Caring for my mom with Alzheimer’s

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Read Jane’s caregiver story: Caring for my mom with Alzheimer’s

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The Growing Demand for Paid Caregivers: A Pressing Need

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The Growing Demand for Paid Caregivers: A Pressing Need

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The ongoing caregiver crisis is becoming increasingly urgent as families navigate serious illness care for loved ones.

“Health plans have a crucial role to play in supporting caregivers, who often feel invisible and overwhelmed. By addressing the needs of these caregivers, we can improve the overall quality of care for patients and alleviate some of the burdens faced by families.”

This headline highlights the importance of recognizing caregivers in the healthcare ecosystem. It emphasizes the need for systemic support and resources to enhance the well-being of caregivers, ultimately leading to better patient care.

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Over the course of my career caring for and developing programs for people with serious illness, I have come to recognize that addressing the needs of caregivers is as essential as providing support to patients themselves. However, ensuring caregivers have the resources they need when they need them is a tremendous challenge - one made more difficult when you consider the vast number of unpaid family caregivers who often fly under the radar.

I recently discussed this central challenge in serious illness care with two of my colleagues and experts in caregiving, ARCHANGELS CEO and Co-Founder Alexandra Drane and healthcare pioneer and UPenn Gerontology Professor Dr. Mary Naylor, in a CareCentrix sponsored webinar for health plans, employers and providers entitled "The Hidden Chasm in Serious Illness Care: Reimagining Caregivers as Partners in Home-Based Care."

Below are some of the key thought-provoking insights on the critical challenges caregivers face and potential strategies that health plans, employers, and providers can utilize to meet their evolving needs that we discussed.

What's Causing the Caregiving Crisis?

We are reaching a crisis point in caregiving, particularly in the home, and it's having a significant, wide-ranging impact.

"The negative consequences of [the current state of caregiving] are affecting every organization in every sector of our society," Naylor said.

At the root of it is that caregivers are often invisible to those who could help them. Many people involved in caregiving do not identify themselves as caregivers, even though what they do undoubtedly qualifies as caregiving. Rather, many people view their caregiving responsibilities as a familial obligation and do not seek out additional support, forcing them to try and navigate a complex system and perform complex tasks without support or training, often taking on a severe financial burden in the process.

On top of these challenges, Dr. Naylor described various external headwinds that are converging and deepening the ongoing crisis.

For one, the U.S. population is aging, creating a growing demand for serious illness care. And with more care taking place at home, caregivers are being given more responsibility to provide care, adapt to new technologies, and coordinate at-home services.

When outside help is required, it's often difficult to find because of a severe shortage of home health care aides that was further exacerbated by the pandemic. Up to 1 million people are on waitlists for these services. In addition, all of these problems are taking a disproportionate toll on Black and Latinx caregivers, deepening existing health inequities.

The Impact on Caregivers

Alexandra Drane emphasized that the effects of stress on caregivers are becoming clear. According to Drane, unpaid caregivers have seen a five-fold increase in drug and alcohol use in recent years. COVID-19 has also been an added stressor, making some caregivers feel increasingly isolated, irritable, and burned out.

Since the onset of the pandemic, caregivers in the "high" category of ARCHANGELS' Caregiver Intensity Index TM have tripled, demonstrating rising levels of stress for the caregiver.

These effects are most pronounced among a particular group of caregivers, known as "sandwich" caregivers, people caring for at least one person over and under the age of 18. Almost one-quarter of adults in the U.S. fall into this category, and according to recent data, of them, 52 percent will have thought about suicide in the last 30 days.

That's a staggering number illustrating the desperate situation many caregivers find themselves in and why solutions are urgently needed.

What Caregivers are Saying

When dealing with individuals receiving serious illness care in the home, family caregivers are especially essential to consider when crafting a plan of care. They're an integral part of achieving success for the individual receiving care, yet they face a unique set of challenges. Molly McHugh, a nursing doctoral student at the University of Pennsylvania, has been interviewing caregivers from the CareCentrix Serious Illness Care at Home program to zero in on precisely what these challenges are.

The number one concern that comes up is financial insecurity. One can imagine the challenge of navigating doctor's visits, dealing with medical bills, and discussing treatment goals when a caregiver is also worried about how they will pay for groceries that week. Adding to this, much of the caregiver population is aging into retirement, meaning they are operating on fixed incomes and trying to support aging parents whose money may be running out.

The interviewees have also expressed that COVID isolation has made it difficult for caregivers to cope, taking away opportunities for community involvement and support, like going to church or the gym. That, combined with the emotional stress that comes with possibly losing a seriously ill loved one, can make caregivers irritable and stressed, potentially spilling over to the patient.

How Health Plans and Provider Groups can Contribute to Solutions

With all of these challenges facing caregivers, Dr. Naylor, Alexandra Drane and I discussed opportunities for healthcare organizations to step in.

Payor and provider organizations can keep caregivers from becoming additional patients by recognizing, engaging, and supporting them while they are extended and stressed as caregivers. Step one is for caregivers to find out their Intensity Score and understand what is most driving it. Knowing their Score empowers caregivers with language to share their caregiving realities and helps them feel less alone in it all.

Then, once they are sustained in their roles, organizations can treat caregivers as assets rather than potential liabilities, viewing them as new partners in at-home care delivery rather than un-trained free agents. Healthcare organizations can do this by implementing programs in the home that seek out caregivers and empower them with encouragement, resources, and a clear path to connect for direction or feedback.

Once health plans and provider groups start treating unpaid caregivers as a population that can have a real impact on their success and the success of their members, and stop thinking of them as something extra, they will move significantly closer to reaching their goals, according to Drane.

"If you're a health plan, you're competing for members, you're working to retain members, and a high-intensity member is costing more," Drane said. "If you become known as a place that does a really, really good job caring for caregivers, you're going to get more members, retain more members, and you can take these steps to reduce costs."

Health plans of all types - commercial, Medicare Advantage (MA), Medicaid, and more - have a lot to gain from putting more resources toward caring for caregivers. For each, there are straightforward steps they can take right now that have immense benefits for them, their members receiving care, and the unpaid caregivers who are supporting them.
Visit our Serious Illness Care at Home Caregiver webinar resource page to access a collection of valuable caregiver tools and resources for health systems, health plans, and provider organizations.

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The Caregiving Crisis: How Health Plans Can Help - CareCentrix

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Over the course of my career caring for and developing programs for people with serious illness, I have come to recognize that addressing the needs of

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Supports for Paid Caregivers: Enhancing Well-Being and Care Quality

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Supports for Paid Caregivers: Enhancing Well-Being and Care Quality

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Paid caregivers face numerous challenges, making support systems essential for their well-being and effectiveness in providing care.

“Support for paid caregivers can include training, access to resources, mental health services, and community support networks. By addressing the physical and emotional needs of caregivers, we can improve both their job satisfaction and the quality of care they deliver."

Highlighting the need for adequate support systems for paid caregivers emphasizes that their well-being directly impacts the quality of care for those they serve. Understanding and addressing caregivers' needs is crucial for sustainable caregiving.

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Background

Most patients have families that are providing some level of care and support. In the case of older adults and people with chronic disabilities of all ages, this "informal care" can be substantial in scope, intensity, and duration. Family caregiving raises safety issues in two ways that should concern nurses in all settings. First, caregivers are sometimes referred to as "secondary patients," who need and deserve protection and guidance. Research supporting this caregiver-as-client perspective focuses on ways to protect family caregivers' health and safety, because their caregiving demands place them at high risk for injury and adverse events. Second, family caregivers are unpaid providers who often need help to learn how to become competent, safe volunteer workers who can better protect their family members (i.e., the care recipients) from harm.

This chapter summarizes patient safetyand quality evidence from both of these perspectives. The focus is on the adult caregiver who provides care and support primarily for adults with chronic illnesses and chronic health problems. The focus is not on those with developmental disabilities. In the first section, we discuss the evidence for protecting the caregiver from harm. The second section addresses research aimed at protecting the care recipient from an ill-prepared family caregiver.

Caregivers as Clients

For centuries, family members have provided care and support to each other during times of illness. What makes a family member a "family caregiver"? Who are these family caregivers, what do they do, and what harm do they face? What does the research tell us about ways to assess the needs of these hidden patients and evidence-based interventions to prevent or reduce potential injury and harm? This section answers these questions and highlights the need for nurses to proactively approach family caregivers as clients who need their support in their own right.

Description of Caregiver Population

The terms family caregiver and informal caregiver refer to an unpaid family member, friend, or neighbor who provides care to an individual who has an acute or chronic condition and needs assistance to manage a variety of tasks, from bathing, dressing, and taking medications to tube feeding and ventilator care. Recent surveys estimate there are 44 million caregivers over the age of 18 years (approximately one in every five adults). The economic value of their unpaid work has been estimated at $257 billion in 2000 dollars. Most caregivers are women who handle time-consuming and difficult tasks like personal care. But at least 40 percent of caregivers are men, a growing trend demonstrated by a 50 percent increase in male caregivers between 1984 and 1994. These male caregivers are becoming more involved in complex tasks like managing finances and arranging care, as well as direct assistance with more personal care. Nurses are likely to see many of these caregivers, although many of them will not identify themselves as a caregiver.

Those caring for someone 50 years or older are 47 years old-on average-and working at least part-time. If they are providing care to an elder who is 65 years or older, they are, on average, 63 years old themselves and caring for a spouse; one-third of these caregivers are in fair to poor health themselves. In many cases, they are alone in this work. About two out of three older care recipients get help from only one unpaid caregiver. In the last decade, the proportion of older persons with disabilities who rely solely on family care has increased dramatically-nearly two-thirds of older adults who need help get no help from formal sources.

Caregiver Responsibilities

Most researchers in the caregiving field conceptualize the care that family members give as assistance with activities of daily living (ADLs) and instrumental activities of daily living (IADLs). But those concepts do not adequately capture the complexity and stressfulness of caregiving. Assistance with bathing does not capture bathing a person who is resisting a bath., Helping with medications does not adequately capture the hassles of medication administration, especially when the care recipient is receiving multiple medications several times a day, including injections, inhalers, eye drops, and crushed tablets. The need to make decisions on behalf of family members who are unable to do so is stressful, as this is contrary to the caregivers' normal role, and they are concerned that the decisions are correct. Supervising people with dementia and observing for early signs of problems, such as medication side effects, are serious responsibilities as family members are often unable to interpret the meaning or the urgency. The medical technology that is now part of home care and the frustrations of navigating the health care system for help of any kind is not even part of the ADL/IADL measures. Being responsible for medical and nursing procedures like managing urinary catheters, skin care around a central line, gastrostomy tube feedings, and ventilators is anxiety provoking for the novice nursing student, but is becoming routine family care of persons with chronic illnesses living at home.

Family caregivers often feel unprepared to provide care, have inadequate knowledge to deliver proper care, and receive little guidance from the formal health care providers. Nurses and family caregivers rarely agree about specific needs or problems during hospital admission or discharge, in part because nurses are often unaware of the strengths and weaknesses of both the patient and caregiver. Due to inadequate knowledge and skill, family caregivers may be unfamiliar with the type of care they must provide or the amount of care needed. Family caregivers may not know when they need community resources, and then may not know how to access and best utilize available resources. As a result, caregivers often neglect their own health care needs in order to assist their family member, causing deterioration in the caregiver's health and well-being.

Hazards of Caregiving

Health professionals' lack of explicit attention to caregivers is a serious gap in health care in light of the more than two decades of research that documents the potential hazards of family caregiving. Caregivers are hidden patients themselves, with serious adverse physical and mental health consequences from their physically and emotionally demanding work as caregivers and reduced attention to their own health and health care.

Declines in physical health and premature death among caregivers in general have been reported., Given and colleagues, and Kurtz and colleagues found that family caregivers experience significant negative physical consequences as the patient's illness progresses. Elderly spouses who experience stressful caregiving demands have a 63 percent higher mortality rate than their noncaregiver age-peers. Most recently, research documents that elderly husbands and wives caring for spouses who have been hospitalized for serious illnesses face an increased risk of dying prematurely themselves.

Declines in caregiver health have been particularly associated with caregivers who perceive themselves as burdened. Caregiver burden and strain have been related to the caregiver's own poor health status, increased health-risk behaviors (such as smoking), and higher use of prescription drugs. Researchers have reported that caregivers are at risk for fatigue and sleep disturbances, lower immune functioning,, altered response to influenza shots, slower wound healing, increased insulin levels and blood pressure,, altered lipid profiles, and higher risks for cardiovascular disease.

Burton and colleagues examined the relationships between provision of care by family members and their health behaviors and health maintenance. These researchers found that, with a high level of caregiving activities, the odds of the caregiver not getting rest, not having time to exercise, and actually not recuperating from illness were also high. In addition, caregivers were more likely to forget to take their prescriptions for their own chronic illnesses. Providing care poses a threat to the overall health of caregivers, which can compromise their ability to continue to be caregivers. If caregivers are to continue to be able to provide care, relief from the distress and demands of maintaining the required care must be considered.

Both highly negative and highly positive consequences of providing care may exist simultaneously. It is plausible that positive consequences, such as rewards and satisfaction, may buffer the negative effects of caregiving. Positive aspects of caregiving are important, some researchers are now using a caregiver rewards scale to better understand caregivers' experiences., Other researchers are exploring the positive aspects of care as the mutuality between the patient and caregiver develops. Archbold and colleagues demonstrated that mutuality and preparedness did reduce some of the strain on the caregiver. Picot and colleagues, worked primarily with African American caregivers and found that the rewards perceived by caregivers were more important than coping. A specific Picot Caregiver Reward Scale of 25 items exists and has been widely used to show that both rewards and costs can exist in the same care situation.

Caregivers who attempt to balance caregiving with their other activities, such as work, family, and leisure, may find it difficult to focus on the positive aspects of caregiving and often experience more negative reactions, such as an increased sense of burden. Regardless of amount of care provided, caregivers may become increasingly more distressed if they are unable to participate in valued activities and interests. More than half of adult children who provide parent care are employed. Caregiving responsibilities can have a negative effect on work roles as caregivers adapt employment obligations to manage and meet care demands., Caregivers who are employed report missed days, interruptions at work, leaves of absence, and reduced productivity because of their caregiving obligations. They have difficulty maintaining work roles while assisting family members. On the other hand, employment provides some caregivers respite from ongoing care activities and serves as a buffer to distress.

Low personal and household incomes and limited financial resources can result in increased caregiver risk for negative outcomes, particularly if there are substantial out-of-pocket costs for care recipient needs. Caregivers who are unemployed or have low incomes may experience more distress because they may have fewer resources to meet care demands. Overall, financial concerns cause particular distress for caregivers during long treatment periods,, as resources become depleted. Higher-income families, with greater financial resources to purchase needed care, might not become as distressed or burdened as those with limited resources.

Caregiver burden and depressive symptoms are the most common negative outcomes of providing care for the elderly and chronically ill., , Caregiver burden is defined as the negative reaction to the impact of providing care on the caregiver's social, occupational, and personal roles and appears to be a precursor to depressive symptoms. Whether the caregiver develops negative outcomes seems to be directly related to the care recipient's inability to perform ADLs, either due to physical limitations or cognitive status. If the care recipient wanders (associated with Alzheimer's disease) or displays unsafe behavior, the caregiver has to be alert and on call for supervision 24 hours per day. The constant concern for managing disruptive behaviors (such as turning on stoves, walking into the street, taking too many pills, yelling, screaming, or cursing) also affects the caregivers negatively.

Care recipients' functional, cognitive, and emotional status predicts caregiver burden and depression, which may be manifested in feelings of loneliness and isolation, fearfulness, and being easily bothered, as the demands of caregiving limit their personal time. Care recipient behavior such as screaming, yelling, swearing, and threatening are associated with increased caregiver clinical depression. Caregiver depression may also have a somatic component, such as anorexia, fatigue, exhaustion, and insomnia.

Research Evidence: Interventions for Caregivers as Clients

The literature provides substantial evidence that caregivers are hidden patients in need of protection from physical and emotional harm. Interventions directed to the family caregiver should serve two purposes (see Evidence Table). First, interventions can support the caregiver as client, directly reducing caregiver distress and the overall impact on their health and well-being. In this intervention approach, the caregiver is the recipient of the direct benefit and the patient benefits only secondarily. Second, interventions can be aimed to help make the caregiver become more competent and confident, providing safe and effective care to the patient, which can indirectly reduce caregiver distress by reducing their load or increasing their sense of certainty and control. In this section, we focus on the research evidence supporting caregivers as clients.

Despite the importance of information and support to help family caregivers, studies on interventions to increase support for family caregivers have lagged far behind those provided for patients. A focus on the family as a part of the patient's therapeutic plan of care is largely absent from interventional research and from general clinical practice as well. Few randomized clinical trials of educational interventions directed toward family caregivers have been conducted or published, and there is limited research to inform us about skills training for caregivers to prevent back injuries, infection, and other potential risks inherent in the caregiver situation.

Interventions To Reduce Burden and Distress

Recent meta-analyses of caregiver interventions found mixed results, which are important to note. Multicomponent interventions, rather than single interventions like support groups or education, significantly reduced burden., Other interventions found no reductions in burden, but significant improvements in caregiver knowledge and delayed nursing home admission for care recipients. Sorenson and colleagues found that interventions aimed at individual caregivers were more effective in improving caregiver well-being than group interventions, although group interventions were more effective in improving care-recipient symptoms. Reasons for this are unclear. The effectiveness of caregiver interventions lasts approximately 7 months. Few studies are funded for long-term followup.

Comprehensive counseling sessions for spouses caring for a person with dementia help reduce depression. Counseling appeared to be effective in improving the quality of life for caregivers of stroke survivors. However, even a simple one-to-one telephone call may be effective in helping the caregiver as client. An automated, interactive voice-response telephone support system for caregivers reduced burden for those caregivers with a lower sense of control over their situation. Davis and colleagues found an unexpected reduction in burden and distress for caregivers receiving friendly, socially supportive phone calls that provided some respite from caregiving, even without in-home caregiver skills training. Home visits and enhanced social support also can help reduce caregiver depression.,

Interventions To Improve Competence and Confidence

Smeenk and colleagues investigated the quality of life of family caregivers who received a home care intervention that consisted of a specialist nurse coordinator, a 24-hour nurse telephone service with access to a home care team, a collaborative home care dossier and case file, and care protocols. The care dossier was used to assist with communication and coordination between caregivers and health professionals. The dossier included the lists of the patient's caregivers, discharge reports, nursing home case transfer reports, medication lists, and multidisciplinary reports. From these reports, specific patient intervention approaches were developed. The intervention significantly improved caregiver quality of life at 1 week and 4 weeks after discharge from the hospital.

Houts and colleagues describe a prescriptive program that is based on research on problem-solving training and therapy. Designed to empower family members to moderate caregiver stress, the Prepared Family Caregiver model is summarized in the acronym COPE (Creativity, Optimism, Planning, and Expert information). COPE teaches caregivers how to design and carry out plans that focus on medical and psychosocial problems that are coordinated with care plans of health professionals. Although proponents of this program assert it has positive outcomes for caregivers, a formal evaluation of COPE was not found.

Caregivers as Providers

Twenty-five years of research have documented that the work of family caregiving can be stressful. That stress can adversely harm both the caregiver and the care recipient. This section addresses research aimed at protecting the care recipient from an ill-prepared or emotionally stressed family caregiver. It describes the link between the work of caregiving and patient harm, and examines interventions that aim to make the caregiver a better worker and less likely to harm the patient.

The Potential for Harm

Caregivers can place their family members at risk in two ways, and both situations are preventable. First, despite their good intentions and hard work, if caregivers do not have the knowledge and skills to perform their work, they may unintentionally harm their loved one. This risk for injury is directly related to lack of knowledge and competence, which can be improved through caregiver education and support. For example, a recent study confirmed that patients had many negative outcomes when untrained informal caregivers managed their home enteral nutrition or tube feeding. Problems included tube displacement, tube clogging, infection, and dehydration-all of which can lead to a stressful caregiving situation and hospital readmission.

In general, family members may be challenged to find the capacity or ability to provide care, but Fulmer found that caregivers who were in poor health or from low-income or dysfunctional situations might have the most limited capacity to provide needed care. They also might not understand the standard for quality and might not provide the level of care that is needed.

The risk of elder abuse

The presence of dementia and cognitive behavioral problems put the care recipient at risk for abusive behaviors by the caregiver., Neglect may also occur, including neglect of nutrition and access to food, unmanaged pain, urinary incontinence, and falls. Caregiver neglect may occur because the dementia patient is unable to communicate and the caregiver is unable to understand or know how to deal with nutritional intake and pain management. Mittelman and colleagues, found that counseling and support for caregivers who face disruptive behaviors from their ill family members will decrease their stress over their multiyear caregiving responsibility.

Medication errors

With regard to caregiver knowledge and skills, an important example of the potential to harm the patient is caregivers' administration of medications. A substantial number of community-dwelling elders do not recall receiving any instructions on taking their medications. They often rely on family members for help in taking them. Travis and colleagues found that caregivers manage between one and 14 medications on a daily basis, have difficulty keeping so many prescriptions filled, and often miss doses due to their work schedules. Their responsibility to monitor for adverse or toxic effects in family members who are not capable of reporting problems themselves is important in preventing dehydration brought on by vomiting and diarrhea, and even more serious emergency situations. Caregivers need education to recognize both classic and atypical adverse drug effects they may see as their family member's condition changes, and help in developing the critical thinking skills that would enable them to manage these potential problems.

Neglect and family conflict

The caregiver's perception of the care situation is crucial in understanding the potential for harm. The amount of "bother" the caregiver perceives in relation to the patient's symptoms affects the caregiving context. Caregivers bothered by symptoms tend to inaccurately assess patients' symptoms, particularly patients' pain and patients' ability to care for self.

Neglect is more common when the caregiver is depressed or distressed. It interferes with the person's ability to make observations and to identify needs or provide social stimulation for their ill family member. When caregivers themselves are distressed, burdened, or depressed, they might leave elders alone for long periods of time, ignore them, or fail to provide any companionship or interaction. Annerstedt and colleagues report on the breaking point of caregivers providing care for patients with dementia. When caregivers have a high level of burden, care becomes inadequate. The amount of care demands and time per week, impaired sense of own identity, clinical fluctuations in the patient, and nocturnal deterioration in the patient predict the caregiver breaking point.

When there is family conflict, there is less assistance to the patient. Bourgeois and colleagues looked at the consequences of disagreement between primary and secondary caregivers and found divergence in perceptions. There was, however, more agreement on patient behaviors and caregiver strain. Primary caregivers with pessimistic secondary caregivers were less distressed than those with optimistic ones. Given and Given found that secondary caregivers left the care situation over time and only returned with increased physical care needs. Caregivers may also relinquish caregiving when they are unsuccessful in maintaining a relationship or when the care becomes difficult, such as when the care recipient loses cognitive function. Conflicts can also occur with unfulfilled or mismatched aid. Negative interactions with kin include despairing comments on caregiving, caregiver health status, and criticisms of care decisions.,

Research Evidence: Interventions for Caregivers as Providers

Interventions designed to help the caregiver become a more competent and confident provider are important to ensure that the patient receives safe and effective care. These interventions are aimed at: preventing abuse and neglect, and improving the caregiver's knowledge and skills; supporting caregivers with early identification of patient problems and managing patient care; developing psychomotor skills training for the safe administration of medications and use of equipment; and enhancing emotional and coping skills to deal with the caregiver's anger and frustration. In these situations, interventions, such as role playing and rehearsal, are designed to help the caregiver better understand how to communicate with the care recipient and manage negative reactions, or remove the care recipient from a dangerous caregiving situation. A focus on the former may help prevent the latter. All of these interventions can strengthen caregivers' competence and reduce harm to the patients under their care.

Strengthening Caregiver Competence

Strengthening caregivers' competence and confidence improves their mastery, defined as the amount of control that a person feels over the forces that are impinging upon him or her. Caregivers with higher levels of mastery of the care situation have more positive responses to providing care, because they perceive themselves as able to meet care demands., Caregiver mastery can reduce caregiver distress by influencing the availability of healthy problem-coping strategies to meet care demands., The control associated with caregiver mastery is also associated with a lower stress response and more positive health-related behaviors among caregivers.

Caregivers require knowledge, skills, and judgment to carry out the tasks of care for patients, and research has shown that caregivers who feel prepared to deliver care (i.e., have the knowledge and skills needed) have less burden. Providing care takes into account the following dimensions: (a) the nature of the tasks; (b) the frequency with which tasks are performed; (c) the hours of care provided each day; (d) the skills, knowledge, and abilities of caregivers to perform tasks; (e) the extent to which tasks can be made routine, and thus incorporated into daily schedules; and (f) the support received from other family members. Caring for patients ranges from providing direct care, performing complex monitoring tasks (e.g., monitoring blood sugar, titrating narcotic dosages for pain), interpreting patient symptoms (e.g., determining the fever level to report to a health care provider), assisting with decisionmaking, and providing emotional support and comfort. Each type of involvement demands different skills and knowledge, organizational capacities (e.g., obtaining needed community services or ordering the best wheelchair), role demands, and social and psychological strengths from family members., , Each of these is a potential area of concern for patient safety and caregiver distress.

Developing Task-Specific and Problem-Solving Skills

Another example of specific training found nurse-initiated interventions to teach older adults and their caregivers about safe medication administration resulted in significant improvements in the ability to name prescribed medications and their administration schedules correctly. This knowledge base is essential for caregiver competence and patient safety.

Psycho-Educational Interventions

The majority of intervention studies for caregivers have utilized a psycho-educational intervention. That is, the intervention emphasizes both the provision of information and a psychological/counseling approach to decrease caregiver distress. Although not explicated as such, these interventions aim to address caregivers as both clients and providers.

Training caregivers in a multiracial primary care setting about specific ways to manage behavioral disturbances appears promising. Anger and depression management interventions decreased anger, hostility, and depression and improved the caregiver's sense of control. Caregivers received moderate support from an AlzOnline's Positive Caregiving classes, in part because they felt an increased sense of control over their caregiving situation. An intervention to teach management of behavioral problems and basic activities of living left caregivers feeling less upset and more capable of managing difficult behaviors. Similar findings were demonstrated for a portable CD-ROM training program for caregivers of people with dementia.

Navigating the Service Delivery System

Evidence-Based Practice Implications

A review of the literature found that society depends on family caregivers to continue providing care for their loved ones, but does little to teach them how to do it and support them in this stressful work. At a minimum, nurses can recognize and respect their efforts, assess their needs, provide concrete instructions on the specific care they are giving (e.g., medication administration, dressing changes, and similar tasks), and refer them to potential sources of ongoing help. Nursing interventions in these areas can help reduce harm to caregivers and the patients they serve.

Respecting the Patient-Family-Professional Triad

Nurses in all practice settings need to partner with patients and their families to move from the traditional nursing context of doing for clients in the "expert model of service delivery" to more mutuality in nurse-client relationships. Nurses may need to "enact more empowering partnering approaches" and "reframe their professional image, role, and values" to accomplish this. Listening skills and the ability to interpret body language and verbal communication are essential competencies in all encounters with patients and their family members.

This model is consistent with Dalton's theory of collaborative decisionmaking in nursing practice triads, where the triad comprises the client, the nurse, and the caregiver. In this vision of the caregiving environment, the nurse interacts with and assists not only consumers, but the informal caregiver as well. This kind of collaboration can increase feelings of control over health, the sense of well-being, and compliance with prescribed treatments.

Providing Information

At all points in the patient's disease trajectory, caregivers need information to deal with the patient's care and treatment demands. Nurses and other health care providers should not expect caregivers to be responsible for sorting out relevant information and applying it to the care requirements for their family members. Research documents that caregivers have difficulty obtaining information from health care professionals, particularly physicians and nurses. Professionals should be more responsive to patients' and family members' information needs.

It is important to provide information in a clear, understandable way through verbal, written, and electronic methods. Caregivers want concrete information about medications, tests, treatments, and resources. They also want time to have their questions answered. Nurses can provide anticipatory guidance for what the caregiver can expect. This kind of information can relieve caregivers' distress arising from uncertainties about their ill family members' disease and treatment status and the care they may need., For example, teaching caregivers how to manage pain and other symptoms benefits both the patient and the caregiver. Caregivers who report more confidence in managing symptoms report less depression, anxiety, and fatigue.

Caregiver Assessment

Given caregivers' essential role in caring for their family members and the hazards they face in doing so, their needs and capacities to provide care should be carefully assessed. This assessment should focus on the caregiver as both client and provider before health professionals can assume caregivers are able to provide competent care without harming themselves or their family member.

Assessing the needs of older people living in the community is a prerequisite for helping caregivers find resources and adhere to a comprehensive plan of care. Outpatient geriatric evaluation and management can reduce caregiver burden, particularly for those who are less experienced caregivers.

Linking Caregivers to Resources

Research Implications

Taken as a whole, interventions to improve caregiver outcomes have been varied. Intervention studies have typically been descriptive in nature, used small convenience samples, and have not included comparison groups. In addition, many studies have limited their samples to patients with only a single diagnosis. In the future, randomized trials are needed to substantiate the role of similar programs in enhancing caregiver skills and minimizing caregiver distress.

The majority of studies have focused on a single construct of the care situation (i.e., examining the correlation between the caregiver-patient relationship and caregiver burden). Researchers have given limited attention to the nature of the knowledge and skills of the caregiver, and to personality factors or dispositions of caregivers., Most of the intervention studies did not consider potential confounding or risk variables, such as prior family relationships, cultural variation, caregiver health status, stage of disease, hours of care, or competing caregiver role demands. In addition, little detail was provided about the intervention design. Finally, few studies described the nature of care tasks of the caregiver, so we are unaware whether caregivers were effectively managing symptoms, providing emotional support, providing direct care, monitoring patient status, or performing a combination of these tasks.

Recommendations for Future Research

Since much of the caregiving research remains descriptive, there are many gaps in the evidence-based research to promote patient safety and quality carefor caregivers as secondary patients and caregivers as providers to vulnerable patients. To advance our knowledge in this field, we recommend several strategies for future research.

Because caregiving is a day-in, day-out role that fluctuates as the needs of the care recipient change, it is not well understood through cross-sectional research designs. It is essential that descriptive and longitudinal designs be employed to follow the care requirements over the course of the illness trajectory. Longitudinal research to date has uniform intervals between observations such as 3, 6, or 9 months, without concern for treatment protocol or stage of disease or care demands. Further studies should take into consideration other time points that may better reflect the disease trajectory, such as time of initial diagnosis, protocols alterations, and points of disease exacerbation or decline. A special focus on safety, risk for negative outcomes, and adverse effects for both the caregiver and care recipient should be noted.

Key variables to include in these studies are the type and stage of the disease and the treatments because they will be related to the types of continuing therapy. These various therapies will be related to the needs of the patient and assistance with self-care, as well as the patient's ability to perform other customary daily activities. Are the demands on the caregiver such that they jeopardize his or her health? We also need larger population-based studies so we can have heterogeneous samples related to diagnosis, stage of disease, caregiver distress, care provided, patient impairment, and duration of care as they relate to caregivers' ability to provide safe care without jeopardizing their own well-being.

Research that uses carefully selected inception cohorts is needed so that variation in care demands can be understood. We will be in a far better position to describe how the course of the disease and associated treatment influence caregivers' responses if we start with inception cohorts of those caregivers beginning with initial treatment and proceeding through palliative care. Adverse patient care and caregiver situations, such as medication errors, falls, and subsequent hospitalizations, can be noted over time.

We need studies that target caregivers that are from minority and economically disadvantaged groups if we are to better understand their own needs and interventions to support them in providing safe care. Furthermore, focus on variations or adaptations needed to minimize caregiver distress related to ethnic, racial, cultural, or socioeconomic diversity is needed. We know very little about the distress and resource limitations of various vulnerable groups and the acceptability of various types of interventions to ethnically and racially diverse populations.

We need to investigate the interplay between the formal and informal systems of care for the ongoing needs of patients as well as caregivers. More research needs to be conducted that focuses on how family influences care-related decisions and the impact to clinically significant processes of care and/or client outcomes. There is very little research to suggest how variations in caregiver contact with the formal health care system interacts with the amount and types of responsibilities faced by family caregivers. Can prepared caregivers contribute to the quality of patient clinical outcomes as well as patient safety? What does competent and appropriate family care contribute to patient clinical outcomes? How does it affect cost and care utilization?

Future research should identify and test patient- and family-directed interventions and chart their impact upon the quality of care outcomes for patients. In addition, interventions should report the cost of care, as well as the cost of utilization of services. What are the costs of negative outcomes that result when safety and neglect or abuse are involved?

Interventions that can demonstrate improved patient outcomes are particularly essential to building a high-quality system of continuing care. Caregivers who face conflicts in competing demands related to caring for children, spouse, or parent and to maintaining their work roles are particularly threatened by and vulnerable to the demands for continuing home care. More appropriate home care and home care support (resulting in caregivers who are prepared to care and have adequate formal support) may lead to fewer patient or caregiver hospital readmissions, fewer interruptions in treatment cycles, shorter periods of work loss, and better patient and caregiver mental health. Quality of care and patient safety are concerns.

We need to design and test interventions to assist patients and their families to increase their preparedness to deal with the overall care process, to deal with both the direct and indirect care demands. How do we increase their sense of control and mastery of their care situation? Future intervention studies should utilize multidisciplinary, randomized clinical trials (including physicians) to determine the unique contribution of educational programs versus social support versus psychological support on caregiver outcomes and patient outcomes.

Future studies should explore whether health care professionals can assist the caregiver to build effective buffers against being overwhelmed and distressed. Interventions that assist the caregiver to engage in activities that promote their own health should be carried out to identify strategies of health promotion. Research questions should address whether or not caregiver distress (i.e., depression and burden) affects caregiver decisionmaking and judgment about patient care, and to examine caregiver behavior and choices and the subsequent quality of care. Do these have a negative impact on the patient or on themselves?

Examining caregiver distress as it relates to quality of care is absent from the literature. Research is needed to understand the quality of care that family members provide and then determine how that care impacts the overall therapeutic plan and patient clinical outcomes.

Longitudinal studies of caregivers are needed to explore the complex interactions of caregiver physical health and mental health, and how self-care and health-promotion practices of the caregiver are altered. Exploration is needed of which self-care practices (i.e., nutrition, exercise, sleep, stress management, preventive and promotive health care) can influence caregiver distress and physical health status so that caregivers can continue to provide quality and positive care.

To better understand the effects of care on family caregivers and on patient outcomes, caregiver roles, responsibilities, knowledge, and skills need to be more rigorously explored and defined. For instance, what do caregivers do well? What do caregivers not do well? In what areas are the patient outcomes most likely to be compromised? In what areas is patient safety most in jeopardy? What areas cause caregivers more distress? Once these questions are answered, we can target interventions at those who are at risk and intervene early in the care situation, rather than late.

Finally, interventions must recognize professional or formal caregivers and family caregivers as partners in health care-partners who offer unique and vital skills and resources-and engage them in the entire plan of care. Such interventions are critical as we increase the focus on outcomes of care and as providers are paid for outcomes performance. Family members as partners are critical.

Conclusion

Family caregivers are critical partners in the plan of care for patients with chronic illnesses. Nurses should be concerned with several issues that affect patient safety and quality of care as the reliance on family caregiving grows. Improvement can be obtained through communication and caregiver support to strengthen caregiver competency and teach caregivers new skills that will enhance patient safety. Previous interventions and studies have shown improved caregiver outcomes when nurses are involved, but more research is needed. There is more to be learned about the effect of family caregivers on patient outcomes and areas of concern for patient safety. Nurses continue to play an important role in helping family caregivers become more confident and competent providers as they engage in the health care process.

Search Strategy

The research cited is a comprehensive but not exhaustive review of the caregiver literature. The literature search for this paper was done in the databases MEDLINE, CINAHL, and PsycINFO using variations of the terms "caregiver" and "long-term care" or "home care services," combined with other terms relating to patient safety and nursing practice. Other terms employed included "case management," "education and training," "medication," and "risk management." The search was limited to articles written in English, but not limited to the United States.

The search terms applied were usually kept very broad, and keyword searches were frequently employed more often than searches that relied upon the use of controlled descriptors, as the topics of patient and caregiver safety, which are often intertwined, are difficult to isolate through clearly defined identifiers. As a result, search results were large, and relevance was frequently determined through the reading and review of abstracts of large sets of retrieved publications. Relevant articles for this review were not always indexed using terms relating to nursing; the potential involvement of the nurse as a contributor to improved patient and caregiver safety was a determinant for inclusion. Some articles discussed the professional health care team in general terms, while others focused on the specific role of a nurse serving as a factor in safe family caregiving. The broad search strategies delivered high retrieval levels and the need to distill relevant evidence.

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Supporting Family Caregivers in Providing Care

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Family caregivers are critical partners in the plan of care for patients with chronic illnesses. Nurses should be concerned with several issues that affect patient safety and quality of care as the reliance on family caregiving grows. Improvement can be obtained through communication and caregiver support to strengthen caregiver competency and teach caregivers new skills that will enhance patient safety.

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Understanding Caregiver Stress: Challenges Faced by Paid Caregivers

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Understanding Caregiver Stress: Challenges Faced by Paid Caregivers

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Paid caregivers often experience significant stress due to the demands of their roles.

“Caregiver stress can arise from various factors, including emotional strain, physical demands, and the challenge of balancing caregiving responsibilities with personal life. Recognizing these stressors is crucial for finding effective coping strategies.

Understanding the stressors associated with paid caregiving is essential for developing supportive measures and resources. By acknowledging these challenges, we can foster a more compassionate environment for caregivers and promote their well-being.

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Caregiver stress: Tips for taking care of yourself

Caring for a loved one strains even the most resilient people. If you're a caregiver, take steps to preserve your own health and well-being.
By Mayo Clinic Staff
As the population ages, more people are doing caregiving. About 1 in 3 adults in the United States is an informal or family caregiver.

A caregiver is anyone who helps another person in need. A person in need might be an ill spouse or partner, a child with a disability, or an aging friend or relative.

Caregivers report higher levels of stress than do people who are not caregivers. It's important for caregivers to know that they, too, need help and support.

Caregiving is rewarding but stressful

Caregiving can have many rewards. For most caregivers, caring for a loved one feels good. And it can make your relationship stronger.

But the demands of caregiving also cause emotional and physical stress. It's common to feel angry, frustrated, worn out or sad. And it's common to feel alone.

Caregiver stress can put caregivers at risk of changes in their own health. Factors that can increase caregiver stress include:

Caring for a spouse.

Living with the person who needs care.

Caring for someone who needs constant care.

Feeling alone.

Feeling helpless or depressed.

Having money problems.

Spending many hours caregiving.

Having too little guidance from health care professionals.

Having no choice about being a caregiver.

Not having good coping or problem-solving skills.

Feeling the need to give care at all times.

Signs of caregiver stress

As a caregiver, you may be so focused on your loved one that you don't see how caregiving affects your own health and well-being. The signs of caregiver stress include:

Feeling burdened or worrying all the time.

Feeling tired often.

Sleeping too much or not enough.

Gaining or losing weight.

Becoming easily irked or angry.

Losing interest in activities you used to enjoy.

Feeling sad.

Having frequent headaches or other pains or health problems.

Misusing alcohol or drugs, including prescription medicines.

Missing your own medical appointments.

Too much stress over time can harm your health. As a caregiver, you might feel depressed or anxious. You might not get enough sleep or physical activity. Or you might not eat a balanced diet. All of these increase your risk of health conditions, such as heart disease and diabetes.

Tips to manage caregiver stress

The emotional and physical demands of caregiving can strain even the strongest person. Many resources and tools can help you care for your loved one and yourself. Make use of them. If you don't take care of yourself, you won't be able to care for anyone else.

To help manage caregiver stress:

Ask for and accept help. Make a list of ways in which others can help you. Then let them choose how to help. Ideas include taking regular walks with the person you care for, cooking a meal for you and helping with medical appointments.

Focus on what you can do. At times, you might feel like you're not doing enough. But no one is a perfect caregiver. Believe that you're doing the best you can.

Set goals you can reach. Break large tasks into smaller steps that you can do one at a time. Make lists of what's most important. Follow a daily routine. Say no to requests that are draining, such as hosting meals for holidays or other occasions.

Get connected. Learn about caregiving resources in your area. There might be classes you can take. You might find caregiving services such as rides, meal delivery or house cleaning.

Join a support group. People in support groups know what you're dealing with. They can cheer you on and help you solve problems. A support group also can be a place to make new friends.

Seek social support. Stay connected to family and friends who support you. Make time each week to visit with someone, even if it's just a walk or a quick cup of coffee.

Take care of your health. Find ways to sleep better. Move more on most days. Eat a healthy diet. Drink plenty of water.

Many caregivers have trouble sleeping. Good sleep is important for health. If you have trouble getting a good night's sleep, talk to your health care professional.

See your health care professional. Get the vaccines you need and regular health screenings. Tell your health care professional that you're a caregiver. Talk about worries or symptoms you have.

Respite care

It may be hard to leave your loved one in someone else's care. But taking a break can be one of the best things you do for yourself and the person you're caring for. Types of respite care include:

In-home respite. Health care aides come to your home to spend time with your loved one or give nursing services or both.

Adult care centers and programs. There are centers that give day care for older adults. Some also care for young children. The two groups might spend time together.

Short-term nursing homes. Some assisted living homes, memory care homes and nursing homes accept people who need care for short stays while caregivers are away.

Working outside the home

Caregivers who work outside the home can feel burdened. If this describes you, think about taking a leave from your job for a time if you can afford to do so.

Employees covered under the federal Family and Medical Leave Act may be able to take up to 12 weeks of unpaid leave a year to care for relatives. Ask your human resources office about choices for unpaid leave.

You aren't alone

Ask for the help you need. Besides asking family and friends, use local resources for caregivers.

To start, check out the national Eldercare Locator or contact your local Area Agency on Aging to learn about services in your area. Or try your state's Aging and Disability Resource Center. You can find these resources online or in a telephone directory.

There also are mobile apps and web-based services that give support to caregivers. These services can help build coping skills and teach about caregiving.

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Show references

1. Caregiver stress. Office on Women's Health. https://www.womenshealth.gov/a-z-topics/caregiver-stress. Accessed June 19, 2023.

2. Veronese S, et al. Palliative approach to Parkinson disease and parkinsonian disorders. https://www.uptodate.com/contents/search. Accessed June 19, 2023.

3. Petrovic M, et al. Digital mental health tools for caregivers of older adults - A scoping review. Frontiers in Public Health. 2020; doi:10.3389/fpubh.2020.00128.

4. Caregiver stress: The impact on physical health. National Council on Aging. https://ncoa.org/article/caregiver-stress-the-impact-on-physical-health. Accessed June 19, 2023.

See more In-depth

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Practical solutions for caregiver stress

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Fight caregiver stress and prevent burnout by taking time to take care of yourself.

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Theoretical Frameworks in Paid Caregiving: Understanding the Foundations

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Theoretical Frameworks in Paid Caregiving: Understanding the Foundations

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The field of paid caregiving is grounded in various theories that help shape practice and improve care quality.

“Theories such as person-centered care, the social model of disability, and the bio-psycho-social model emphasize the importance of recognizing the whole person and the various factors influencing their well-being. Understanding these frameworks can enhance caregiver effectiveness and client outcomes.”

Understanding the theories and tenets of paid caregiving is crucial for professional development and improving care practices. These frameworks provide a foundation for caregivers to deliver empathetic, effective, and holistic care.

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Abstract

Acceptance of roles in the care of older adults by a family caregiver depends on factors emanating from commitment to familial relationships, widespread cultural expectation, and debt of gratitude. This study aims to develop a theory that explains the acceptance of the role of caregiving of the older adults by the family caregiver necessary to predict behavioral adaptation and control caring phenomenon that favors successful meeting of caring expectation across trajectory phases and transitions. A deductive axiomatic approach to theory generation was utilized, resulting in four axioms that served as bases for four propositions. Acceptance Theory of Family Caregiving implies that older adults who expect their children to take care of them as they age have cultural influence and that the acceptance of the role will determine the caregiver's acceptance of consequences in the form of physical, economical, psychological, and spiritual aspects. In terms of preparedness, family members who accept the possibility of the decline of their older adults are more likely to be assume caregiving roles efficaciously. In the process that family members face in this so-called trajectory caregiving process, resources play a significant role. The developed theory suggests that the care of the older adult in the family caregiving process is determined by the acceptance of role assumption by the family caregiver across trajectory phases. This study highlights the vital implication of acceptance of role assumption to the outcomes of the caregiving process with respect to older adult care, prevention of family caregiver burden, and establishment of strong familial and social relationships.

Keywords: acceptance, adaptation, aged, caregiver burden, family caregiving, nursing

Introduction

The rapidly aging population has become an urgent global health concern (Sakakibara et al., 2015) because the long-term process of older adult care is faced with limited family and professional caregivers (Harvath et al., 2020). The widespread expectation on families, along with its ubiquity of practice to watch over their older adults, has been aligned with strong intergenerational family solidarity (Paguirigan, 2019). More so, the conception of debt of gratitude has both influenced the responsibility a significant burden. The widespread expectation in terms of family caregiving reveals that 85 to 95% of all older adults receive care from their family members on a global scale (Gaugler et al., 2018). Likewise, the need to balance personal and social roles amidst increasing pressure to provide care to an older adult becomes the caregiver's predicament (Donovan et al., 2011; Thomas et al., 2017). Meanwhile, it gives some an opportunity to reward and fulfill role assumptions (Luichies et al., 2021; Reinhard et al., 2011).

Acceptance of caregiving roles assumption in the care for an older adult can be as sudden or carefully planned to depend on several factors. Despite the many shared experiences of family caregiving, this process varies in terms of family dynamics, nature of timing, duration, transitions of care, and end of life. Common to this journey is the acceptance of the family members to be able to enter the adjustment process of becoming their "self" in caregiving (Nguyen & Levkoff, 2020). Acceptance of change that requires family decision-making is vital to initiate action (Kristanti et al., 2021; Potter et al., 2017). Caregiving trajectory is the term used to denote the process that family caregivers undergo specifically in phases that generally include role awareness, emerging responsibilities, increasing demands for care, and finally, end of life (Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, 2016). In the process of caregiving, acceptance and commitment as central aspects of this emerging evidence-based practice are crucial in stress levels and the quality of life of caregivers (Han et al., 2021).

Assignment of the primary caregiver for an older adult in the family is based on several factors that encompass existing relationships, gender, societal norms and expectations, geographical proximity, and moral and expected familial obligation (Luichies et al., 2021; Nguyen et al., 2021). Evidence suggests that family caregivers do not receive adequate preparation in the assumption of caregiving roles in matters related to problem-solving and communication skills (Robinson et al., 2020). Inadequate preparation and execution caused by an interplay of factors related to poor acceptance of the current condition, inadequate resources, conflict with familial and employment responsibilities and financial difficulties, and new circumstances result in inadequate adaptation to the caregiving role (Ainamani et al., 2020; Hashemi-Ghasemabadi et al., 2016; Nguyen et al., 2021). Moreover, increasing dependence on the caregiver emanates from the older adult's functional decline over time (Ainamani et al., 2020; Pinto et al., 2021), and the caregiving role becomes more intense in the advanced and end-of-life phase (Robinson et al., 2020).

Relevant to understanding the beginning role of caregiving is acceptance of expectation. The Acceptance Theory of Family Caregiving is based on societal and familial expectations endured through several generations (Luichies et al., 2021). In simpler terms, the family caregiver is aware of such a responsibility of looking after the older adult when the time of physical and cognitive decline and dependency emerge while it is also an expectation of the older adult to have someone to look after them when the time comes amidst the possibility of embarrassment or perceived burden on family caregivers (Bekhet & Garnier-Villarreal, 2020; Hickman et al., 2020; Kellner et al., 2017). Therefore, a successful view on adaptation to family caregiving roles prerequisites acceptance.

While cultural expectations on family caregiving hold true, it is vital to determine the degree of family members' acceptance as it is integrated within them. Therefore, this study aims to develop a theory that explains the acceptance of caregiving roles by the family caregiver for the older adults necessary to predict behavioral adaptation and control caring phenomenon that favors successful meeting of caring expectation across trajectory phases and transitions. Developing a working knowledge of acceptance as it vitally influences caring behaviors among family caregivers contributes to older adults' health and well-being. Imperative to this understanding shall be beneficial in relating it with family caregivers' preparedness, self-efficacy, and quality of life secondary to planned behavior of caring.

Methods

The Acceptance Theory of Family Caregiving utilized a deductive approach. Starting with broad concepts and determining which concepts apply to populations, the top-down approach leads to the formulation of conclusions, known as deductions. For a sound deduction to occur, generalizations must be true because this is where logical consequences can be drawn (Utley et al., 2017). As a premise for deductive argument, an axiom is a logical principle assumed to be true and chosen carefully to avoid inconsistency. Axioms demonstrate consistency, plausibility, and richness to provide a system of logic in the creation of a theory. From a generalized statement that contains abstractions, a theory explains and predicts the interrelationship of variables through its ideas, concepts, and themes (Kivunja, 2018).

With the use of a deductive method to theory development, generalizations about the caregiving process, family psychology, cultural influence of older adult care, and gerontology nursing were determined through rigorous literature reviews. The definition of a family caregiver applies to any relative, partner, friend, or neighbor of the older adult that is based on a significant relationship. Following a literature review, the iterative yet sequential process of searching, screening, and assessing related works proceeded with data extraction and analysis (Paré & Kitsiou, 2017). Data extraction and analysis resulted in the identification of trends and patterns to systematically view the statements that were generally accepted to be true. These non-debatable facts known as axioms were identified, which subsequently became the basis for propositions. An axiomatic approach paved the way for preserving and furthering the growth of the discipline that tackles older adult care through family caregiving. Building the theory through logic and axiomatic systems of the behavior (Levy, 2017) of family caregiving, identification of propositions from the theory, and establishing testable hypotheses are placed at the process.

The proposed Acceptance Theory of Family Caregiving is an example of a mid-range theory that describes, explains, and predicts phenomena of caregiving of older adults by the family members in the practice of gerontology nursing. It also describes how the variables, namely acceptance, the trajectory of caregiving, resources, and cultural influence, relate with each other.

Results

Consistent with the deductive axiomatic approach to theory generation, literature reviews play a crucial role in the identification and support of the identified axioms and propositions in the buildup of the theory. Table 1 illustrates the extracted four axioms that were derived from literature reviews, and these served as the reference in the formulation of four propositions necessary in the framework of the developed acceptance theory of family caregiving.

Table 1

Axioms

Propositions

Theory

Axiom 1
Family relationships are founded based on commitment derived from various forms.

Proposition 1
Older adults who expect their children to take care of them as they age have cultural influence.

Care of the older adult in the family caregiving process is determined by the acceptance of role assumption by the family caregiver across trajectory phases (Acceptance Theory of Family Caregiving)

Axiom 2
Acceptance pre-requisites successful adaptation to one's environment.

Proposition 2
Acceptance of the role will determine the caregiver's acceptance of consequences in the form of physical, economical, psychological, and spiritual aspects.

Axiom 3
Acceptance of the caregiving role is a process.

Proposition 3
Family members who accept the possibility of the decline of their older adults are more likely to be prepared to assume caregiving roles.

Axiom 4
The family, as a unit, strives for balance and requires resources to sustain it.

Proposition 4
The trajectory family caregiving process is influenced by factors such as resources.

The role of a significant relationship between older adults and that of the family caregiver extends beyond influences of blood and marriage through the commitment of various forms explicitly referred on the definition of family caregiver that refers to any relative, partner, friend, or neighbor who provides a broad range of assistance-related activities with a basis of significant relationship to an older adult with chronic and disabling conditions. Therefore, family relationships are founded based on commitment derived from various forms (Axiom 1), which implicates those older adults who expect their children to take care of them as they age have cultural influence (Proposition 1).

Acceptance of the change is crucial to successfully adapt to family dynamics, atmosphere, and role assignments in the presence of older adults that require family caregiving. While it explains that acceptance pre-requisites successful adaptation to one's environment (Axiom 2), the beginning and unfolding responsibilities demand careful family discussion in addressing the older adults' needs along with the caregiver responsibilities that accompany them along with all phases of family caregiving trajectory, thereby suggests that acceptance of the caregiving role is a process (Axiom 3). The widespread expectation of pursuing caregiving of the older adults supports the idea that acceptance of the role will determine the caregiver's acceptance of consequences in the form of physical, economical, psychological, and spiritual aspects (Proposition 2). Furthermore, the acceptance of role is challenged as responsibilities of family caregiving unfold that may present role ambiguity, future uncertainty, and self-efficacy concerns during care provision. This implies that whatever change the older adults present during the term of care provision, the family caregiver is ready to accept the consequences that may accompany role assumption supporting the idea that family members who accept the possibility of the decline of their older adults are likely to be prepared to assume caregiving roles (Proposition 3).

Following unfolding responsibility in the family caregiving trajectory, increasing care demands lead to surrogacy in terms of healthcare decisions and physical care. This is congruent with the idea that the family, as a unit, strives for balance and requires resources to sustain it (Axiom 4). Therefore, the trajectory family caregiving process is influenced by factors such as resources (Proposition 4). Acceptance of the caregiving role also means that end-of-life care terminates the family caregiving trajectory. This requires more intensive caregiving demands, which supports that acceptance of the role will determine the caregiver's acceptance of consequences in the form of physical, economical, psychological, and spiritual aspects (Proposition 2). This idea is applied not only in the final phase of the family caregiving trajectory but is also evident during unfolding responsibilities and increasing care demands.

Discussion

Literature postulates the dynamism of family relationships as crucial to understanding the behavior of its members. Children and parents, for instance, remain closely related across the course of life, and the well-being of these individuals is guaranteed by the quality of intergenerational relationships that they have. These relationships are enduring and consequential, and their behavior is a result of the years they have been together (Schulz et al., 2020; Thomas et al., 2017). The quality of family relationships in the form of support and supervision determines the favorable influence and consequently acceptance among growing children of the responsibility that they hold as their older adults age. Children of the older adults, for instance, assume roles from a personal perspective with the basis of obtaining profound meaning and reward and as a means of giving back the love and care they were given as children along with the idea that central to their well-being is the commitment to favor connection of generations (Reinhard et al., 2011; Thomas et al., 2017).

Shared within the context of familial relationships and rearing, beliefs that underpin the family members' behavior in the care of their older adults encompass culture (Revenson et al., 2016). Who ends up as becoming the primary caregiver is shaped by existing relationships to the older adult in need of care, gender expectations, cultural background, and geographic proximity (Scheibl et al., 2019; Solomon et al., 2018). Primary caregivers may range from a spouse or any other family members, and this decision is determined by cultural factors (Donovan et al., 2011). Family caregivers often serve as advocates and coordinators of care, and their roles are unfolded within transitions of caregiving trajectory. Assumption of caregiving roles by the family member is directed towards achieving a satisfactory level of acceptance regarding this crucial decision-making process which is highly influenced by widespread cultural expectation (Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, 2016; Reinhard et al., 2011). The cultural influence of both the older adults and the caregivers likewise provides direction in the choice of culturally appropriate care that the recipient requires. This likewise connotes that caregiving services become highly individualized for the older adults to receive compared to when they are delivered by service agencies, implicating the cultural relevance of family caregiving societal acceptance (Donovan et al., 2011; Revenson et al., 2016). Endured by generations, the witnessed caring practices have somehow shaped the family members' views of anticipating the care of the older adults in the future. It is also grounded from the influences of internalized debt of gratitude and desire to give back the care they once received, thereby enhancing their motivation to accept family caregiving roles.

Equally important in exploring the cultural and relationship-based nature of the concept of family caregiving is the understanding of the process to denote when it begins, pursues, and terminates. The trajectory of family caregiving begins with the awareness of the family members towards the older adults' behavioral indication or changes in health that may warrant a certain degree of caregiving (Gilbert et al., 2018). Functional impairment, when gradually observed, provides subtle assumption of acceptance of family caregiving as compared with sudden older adult's health decline that proves challenging (Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, 2016). The Roy Adaptation Model explains the interaction of a person in a changing environment (Ursavas et al., 2014). Given the complexity of family caregiving, preparedness for the responsibility is crucial. Inadequate preparation of the caregivers is what constitutes burnout (Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, 2016). This denotes the relative importance of acceptance as a requirement for being prepared to assume caregiving roles. While the intensity of required assistance may not be as exhausting in the initial phase of the caregiving trajectory, accepting the role prepares the caregiver for more challenging roles in the future. The psychological well-being of the family caregiver relates to acceptance of the role that positively influences the outcomes of the caregiving (OMalley & Qualls, 2020). Studies pointed out higher anxiety levels and burden caused by longer duration of caregiving, which can be attributed to required duties that range from provision of assistance to direct administration of services to the care recipient, assistance with household activities, self-care measures, ambulation or mobility, emotional and social support provision, advocacy, coordination of required health care and surrogacy (Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, 2016; Lou et al., 2015). The need to balance personal and social roles in these trying times can prove to be challenging, specifically with respect to competing pressures of employment, watching over their own children, and older adult care (Donovan et al., 2011; Thomas et al., 2017). The widespread expectation of pursuing caregiving of the older adults provides clear implications that informal caregiving is what families must take as a primary responsibility (Revenson et al., 2016).

The unpredictability of the older adult's condition and poor acceptance of role compromise the process of caregiving, leading to disadvantaged positions for both parties (Camak, 2015; Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, 2016). Over time, the older adult's dependency contributes to increasing reliance on the family caregiver to perform required functions (Schulz et al., 2020). Consequently, the caregiver is expected to provide more assistance than usual which compromises resources and work-life balance. Change in caring status and demands results in strengthening coping secondary to required adaptation. While increasing physical dependence leads to more caregiving demands, there is not always a negative consequence as some family caregivers find fulfillment in the accepted caring roles. Domains of care may include monitoring older adults' condition, medication administration, communication with healthcare professionals, and transition from home to hospital or facility management. This implicates that family caregivers are introduced as partners with healthcare professionals in the integration of a collaborative approach of care with an emphasis on caregiver-friendly policies and flexible arrangements (Bell et al., 2019). On a similar note, better transitional care calls for effective and quality care as the transition from one setting to another proves to be the most vulnerable and traumatic experience of the family caregiving process (Reinhard et al., 2011).

Caregiving roles may change over time and may be highly individualized as older adults tend to go into the transition from one health care setting to the other, changes in the familial, social, and geographical context of care provision. While transitions can be planned as in the case of scheduled older adult's follow up in the hospital or unplanned such as emergency room visit or required re-admission, that certain degree of unpredictability of family caregiving proves that the family members' needs and dynamics must be assessed periodically so that their needs are addressed during transitional periods (Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, 2016; Gitlin, 2019). Caregiving responsibilities are considered acute for families if older adults suffer from abruptly appearing conditions such as stroke, dementia, or even mental illness (Gitlin, 2019). These often become troublesome as the older adult's condition becomes complex and their behaviors become severe (Liu et al., 2018; Reinhard et al., 2011). Acceptance of the nature of predictability of the older adult's condition over time makes caregiving roles well-tolerated alongside the idea that family members are more likely equipped to respond to demands when prompted.

The increasing complexity and intensity of older adults' conditions prove to be challenging as they are burdened by their decisions to determine what would be best for their older adults (Jehangir et al., 2019; Reinhard et al., 2011). With respect to the beginning and sustaining family caregiving process, caregivers relied on siblings and other support services to communicate older adults' intensified needs (Gilbert et al., 2018). Monetary resources to pave the way for medication procurement, check-up, and required to follow up are crucial to both the health of the family caregiver and older adult (Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, 2016). The amount and type of care the family caregivers provide heavily depends on economic resources and the demand for the family caregiver's time and energy (Kaplan & Berkman, 2021; Schulz et al., 2020). Despite challenges, caregivers find meaning and purpose at the end-of-life care phase of family caregiving (Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, 2016; OMalley & Qualls, 2020). The cultural beliefs that underlie the older adults and the family caregivers are crucial to care provision in this process (Revenson et al., 2016).

With an unprecedented demographic imperative of the global population of older adults, specific family caregiving implications arise (Gitlin, 2019). The concepts related to family caregiving encompass the phenomenon as a process influenced by resources, cultural expectation, and degree of acceptance by caregivers who provide care to an older family member. The development of a theory to fully understand this process is beneficial to certain degrees as it explains the occurrence of practice, predicts based on future empirical evidence, and controls the process that favors both the older adult and the caregiver. This theory can greatly contribute to the practice of gerontology nursing in matters relating to older adults' health and well-being, family structures and relationships, and caregiver self-efficacy and fulfillment. As the family caregivers represent the health care system's partners to ensure older adults' maximal health, understanding this theory from the perspective of both the older adults and their caregivers is essential.

The Acceptance Theory of Family Caregiving aims to explain acceptance as vital in the trajectory phases of caregiving, not only on the older adult but also on the family caregiver to initiate needed actions (Potter et al., 2017). It also aims to predict that inadequate preparation to caregiving role assumption due to poor acceptance of the demanded situation often leads to caregiver burden (Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, 2016). Therefore, mitigation strategies to address caregiver burden is to allow the family caregivers to realize the change that demands adaptation, and only through acceptance of family caregiving role should adjustment set in (Nguyen & Levkoff, 2020).

Within the bounds of familial relationships and widespread cultural expectation, the care of the older adults translates as a responsibility of the family members endured by several generations (Gaugler et al., 2018). The strong inter-generational solidarity emphasizes that family caregiving, as the name implies, is based on a commitment derived from cultural and familial factors (Paguirigan, 2019). Varying from these influences, the family caregiving process, known as trajectory, involves a series of phases that present several challenges to both older adults and family caregivers (Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, 2016). Requisites to meeting each phase of the process is a degree of acceptance of role assumption by the caregiver that equates to the anticipation of the requirement of resources, role changes, and demands with respect to awareness, unfolding responsibilities, increasing demands, and end of life phases of family caregiving.

Acceptance Theory of Family Caregiving

Understanding acceptance also intends to communicate it as inherent in family relationships within the context of older adult care (Schulz et al., 2020; Thomas et al., 2017). While it is an expectation for older adults to have someone to care for them when dependency calls for caregiving roles, the crucial role it plays determines the success of the family caregiving process (Luichies et al., 2021). At some point in their lives, older adults require someone to perform for them the activities of daily living owing to increasing physical dependency and cognitive decline. The acceptance of a family member's caregiving role, while a process, is situated in every phase of the family caregiving trajectory. Associated with motivation, acceptance is a driving mechanism that influences the behavior of the family caregiver in performing roles that are unique in every step of caregiving.

Figure 1 shows the theory's framework as it relates to the essential concepts of family caregiving. Central to the framework is acceptance infused within the overlapping trajectory phases: awareness, unfolding responsibilities, increasing care demands, and end of life. The diagram attempts to communicate that as the phase/s (represented by green circles) move away from acceptance (represented by a yellow circle), it decreases infusion not only with acceptance but successful family caregiving (represented as a large red circle) as well.

The overlapping trajectory phases imply the stages that every family caregiver goes through with respect to the needed assistance of the older adult. As the care can be highly individualized, the demands vary along with other determinants, including resources and self-efficacy. Similarly, there is a variation in terms of the duration by which the family caregiver undergoes, along with the gradual or sudden emergence of care demands. The care of the older adult in the family caregiving process is determined by the acceptance of role assumption by the family caregiver across trajectory phases, crucial in the understanding of successful family caregiving.

The theory is applied among families whose care of older adults is within their domain. It may not be fully applied to families that delegate the care of their older adults in nursing facilities. In addition, the underlying cultural acceptance of family caregiving influences the theory's applicability. Lastly, the definition of the family caregiver in the context of this theory extends beyond the influence of blood and marriage, consistent with related literature and studies. Going through the provided definition minimizes confusion relating to the population scoped within the theory.

Conclusion

While several challenges await the family caregiver in the assumption of societal and culture-based measures alongside the expectation of older adult care, much concern is concentrated on their health status over the caregiver's situation. The discrepancy of the care recipient and provider focus paved the way for a developed theory that targets acceptance of these challenging roles of the provider as it greatly determines the outcomes of favorable healthcare outcomes of the recipient. The developed theory suggests that the care of the older adult in the family caregiving process is determined by the acceptance of role assumption by the family caregiver across trajectory phases. This study highlights the vital implication of acceptance of role assumption to the outcomes of the caregiving process with respect to older adult care, prevention of family caregiver burden, and establishment of strong familial and social relationships.

Acknowledgment

All authors would like to thank Cebu Normal University and Angeles University Foundation for the support and encouragement in this academic scholar study.

Declaration of Conflicting Interest

All authors declare no potential conflict of interest.

Funding

No specific grant from any funding institution is received for this research.

Authors' Contributions

AF conceptualized, designed, analyzed, literature searched, and drafted the study. EF contributed to conceptualization, edited, formatted, and prepared the final manuscript draft. DP likewise contributed to conceptualization and analysis, reviewed, and supported concepts with intellectual content and literature search. FG additionally analyzed data with intellectual content and literature search. All authors substantially contributed with equal efforts until approval of the final article and acknowledged that all those entitled to authorship are listed as authors until publication.

Authors' Biographies

Alfredo Feliciano, PhD, RN is an Assistant Professor IV at the College of Nursing, Angeles University Foundation, Angeles City, Philippines and a DScN Gerontology Nursing student at the College of Nursing, Cebu Normal University, Cebu City, 6000, Philippines.

Evelyn Feliciano, PhD, RN is an Assistant Professor VI at the College of Nursing, Angeles University Foundation, Angeles City, Philippines and a DScN Gerontology Nursing student at the College of Nursing, Cebu Normal University, Cebu City, 6000, Philippines.

Daisy Palompon, DScN, PhD, RN is a Professor VI and Vice-President for Academic Affairs at the College of Nursing, Cebu Normal University, Cebu City, 6000, Philippines.

Dr. Ferdinand Gonzales is an Assistant professor at the Medical-Surgical and Pediatric Nursing Department, College of Nursing, University of Hail, Saudi Arabia.

Data Availability

Not applicable.

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Acceptance of roles in the care of older adults by a family caregiver depends on factors emanating from commitment to familial relationships, widespread cultural expectation, and debt of gratitude. This study aims to develop a theory that explains the ...