# data[].attributes.headline
Transitioning to adult care -  Kenyon et al., 2012

# data[].attributes.subject
Transitioning to adult care -  Kenyon et al., 2012

# data[].attributes.body
differences in peds vs adult care were articulated as surprising, unexpected, and/or challenging to deal with

# data[].attributes.headline
Availability of clinical decision making tools - Kenyon et al., 2012

# data[].attributes.subject
Availability of clinical decision making tools - Kenyon et al., 2012

# data[].attributes.body
considering diagnostic tools for providers

# data[].attributes.headline
Pain assessment and management - Kenyon et al., 2012

# data[].attributes.subject
Pain assessment and management - Kenyon et al., 2012

# data[].attributes.headline
Accessibility of clinical information - Kenyon et al., 2012

# data[].attributes.subject
Accessibility of clinical information - Kenyon et al., 2012

# data[].attributes.body
want accessible individualized care plans

# data[].attributes.headline
Experiences of discrimination impact caregiver-provider interactions - Blakey et al. 2022

# data[].attributes.subject
Experiences of discrimination impact caregiver-provider interactions - Blakey et al. 2022

# data[].attributes.body
Having to navigate the added responsibility and subsequent stress associated with the uncertainty of how their child would be treated within healthcare settings

# data[].attributes.headline
Pain scales do not work - Adegbola et al. 2012

# data[].attributes.subject
Pain scales do not work - Adegbola et al. 2012

# data[].attributes.body
discussion with clinicians beyond pain scales to accurately assess pain experience

# data[].attributes.headline
Identification of pain - Campelo et al. 2017

# data[].attributes.subject
Identification of pain - Campelo et al. 2017

# data[].attributes.body
identification of these painful events is based on the cognitive development of each child

# data[].attributes.headline
Identification of the pain of the child with sickle cell disease by the nurse - Campelo et al. 2017

# data[].attributes.subject
Identification of the pain of the child with sickle cell disease by the nurse - Campelo et al. 2017

# data[].attributes.body
children use verbal and non-verbal forms to interact

# data[].attributes.headline
Strategies to evaluate and control the pain of the child with sickle cell disease - Campelo et al. 2017

# data[].attributes.subject
Strategies to evaluate and control the pain of the child with sickle cell disease - Campelo et al. 2017

# data[].attributes.headline
Strategies to evaluate and control pain - Campelo et al. 2017

# data[].attributes.subject
Strategies to evaluate and control pain - Campelo et al. 2017

# data[].attributes.headline
Enabling self-management - Carlson et al. 2022

# data[].attributes.subject
Enabling self-management - Carlson et al. 2022

# data[].attributes.body
promoting patient/family self-management of SCD

# data[].attributes.headline
Improving communication among the care team - Kenyon et al., 2012 

# data[].attributes.subject
Improving communication among the care team - Kenyon et al., 2012 

# data[].attributes.body
lack of timely communication across care settings among clinical staff, leading to delays in care

# data[].attributes.headline
Enhancing education and peer support for parents - Kenyon et al., 2012

# data[].attributes.subject
Enhancing education and peer support for parents - Kenyon et al., 2012

# data[].attributes.body
what to expect when raising child with SCD

# data[].attributes.headline
Description of pain experience - Adegbola et al. 2012

# data[].attributes.subject
Description of pain experience - Adegbola et al. 2012

# data[].attributes.body
define acute pain as an unbearable episode of localized pain that exceeds everyday chronic pain, escalates to ED from home care

# data[].attributes.headline
Managing relationships (Professional relationships) - Adegbola et al. 2012

# data[].attributes.subject
Managing relationships (Professional relationships) - Adegbola et al. 2012

# data[].attributes.body
patient difficulty communicating with new/different care teams, concern that patient is believed by provider

# data[].attributes.body
learning how to navigate SCD as they grow up

# data[].attributes.headline
Managing relationships (Personal relationships) - Adegbola et al. 2012

# data[].attributes.subject
Managing relationships (Personal relationships) - Adegbola et al. 2012

# data[].attributes.body
masking condition/needs in certain situations/environments

# data[].attributes.headline
Insufficient healthcare services - Al Saif et al. 2022

# data[].attributes.subject
Insufficient healthcare services - Al Saif et al. 2022

# data[].attributes.body
caregivers prefer health centers over large hospitals

# data[].attributes.headline
Dissatisfaction with hospital facilities - Al Saif et al. 2022

# data[].attributes.subject
Dissatisfaction with hospital facilities - Al Saif et al. 2022

# data[].attributes.body
delays in ED, long wait times, lack of space

# data[].attributes.body
nurses described patients "getting away with it" in regard to pain control/care

# data[].attributes.headline
Intricacy of caring for SCD patients - Al Saif et al. 2022

# data[].attributes.subject
Intricacy of caring for SCD patients - Al Saif et al. 2022

# data[].attributes.body
psychological tragedy, caregiver hardships, cost of care

# data[].attributes.headline
Invisibility of psychological impact of growing up with SCD - Berghs et al. 2022

# data[].attributes.subject
Invisibility of psychological impact of growing up with SCD - Berghs et al. 2022

# data[].attributes.headline
Anxieties about pethidine - Alleyne and Thomas 1994

# data[].attributes.subject
Anxieties about pethidine - Alleyne and Thomas 1994

# data[].attributes.body
analgesic preferred by patients, but difficulty obtaining

# data[].attributes.headline
Lack of individualized care - Alleyne and Thomas 1994

# data[].attributes.subject
Lack of individualized care - Alleyne and Thomas 1994

# data[].attributes.body
perceived themselves to have a bad name with the nursing staff

# data[].attributes.body
internal (behavioral and cognitive) and external coping mechanisms by caregivers

# data[].attributes.headline
Poor pain management - Alleyne and Thomas 1994 

# data[].attributes.subject
Poor pain management - Alleyne and Thomas 1994 

# data[].attributes.body
dissatisfaction with pain management and disease understanding of nurses

# data[].attributes.headline
Knowledge of patient's condition, common symptoms, and care - Atoku et al. 2023

# data[].attributes.subject
Knowledge of patient's condition, common symptoms, and care - Atoku et al. 2023

# data[].attributes.body
knowing symptoms and suffering of child

# data[].attributes.headline
Psychosocial challenges faced by the caretaker - Atoku et al. 2023

# data[].attributes.subject
Psychosocial challenges faced by the caretaker - Atoku et al. 2023

# data[].attributes.body
impact on physical/mental wellness and ability to function

# data[].attributes.headline
Discussions of Addiction - Brown et al. 2014

# data[].attributes.subject
Discussions of Addiction - Brown et al. 2014

# data[].attributes.body
patients worried about what providers think of them, providers uncomfortable with dependency on pain meds

# data[].attributes.body
nature of pain and strategies

# data[].attributes.headline
Intricacy of caring for Patients with SCD which includes the sub-themes: the psychological tragedy, caregiving hardships, and cost of care on families - Saif 2022

# data[].attributes.subject
Intricacy of caring for Patients with SCD which includes the sub-themes: the psychological tragedy, caregiving hardships, and cost of care on families - Saif 2022

# data[].attributes.headline
Initial reaction to the diagnosis - Owoo and Tadros 2021

# data[].attributes.subject
Initial reaction to the diagnosis - Owoo and Tadros 2021

# data[].attributes.headline
Families' challenging interactions with providers lead to perceptions of discrimination - Blakey et al. 2022

# data[].attributes.subject
Families' challenging interactions with providers lead to perceptions of discrimination - Blakey et al. 2022

# data[].attributes.body
being directly spoken to harshly, repeatedly dismissed, or ignored altogether by providers

# data[].attributes.headline
Care that family caregivers provide - Brown et al. 2023

# data[].attributes.subject
Care that family caregivers provide - Brown et al. 2023

# data[].attributes.body
supporting person they care for

# data[].attributes.headline
Patient-Provider Relationship - Brown et al. 2014

# data[].attributes.subject
Patient-Provider Relationship - Brown et al. 2014

# data[].attributes.body
patients feel biased against, providers feel powerless

# data[].attributes.headline
Interacting With Others - Booker et al. 2006

# data[].attributes.subject
Interacting With Others - Booker et al. 2006

# data[].attributes.body
participants likened dealing with healthcare professionals to a battle, whereby the felt that they had to work hard to convince the doctors that they were in genuine pain and in need of help.

# data[].attributes.headline
Healthcare system factors underlie discrimination - Blakey et al. 2022

# data[].attributes.subject
Healthcare system factors underlie discrimination - Blakey et al. 2022

# data[].attributes.body
history of racism, inadequate knowledge, stigma/bias impacting perception of healthcare system

# data[].attributes.headline
A dichotomy of awareness - Campbell et al. 2010

# data[].attributes.subject
A dichotomy of awareness - Campbell et al. 2010

# data[].attributes.body
despite awareness, still little knowledge of disease by family/medical staff/others

# data[].attributes.headline
 Insufficient healthcare services - Saif 2022

# data[].attributes.subject
 Insufficient healthcare services - Saif 2022

# data[].attributes.headline
Barriers to receiving good, personalized, and responsive care: not being heard - Renedo et al. 2019

# data[].attributes.subject
Barriers to receiving good, personalized, and responsive care: not being heard - Renedo et al. 2019

# data[].attributes.headline
Lack or loss of control - Alleyne and Thomas 1994

# data[].attributes.subject
Lack or loss of control - Alleyne and Thomas 1994

# data[].attributes.body
lack of involvement in pain control

# data[].attributes.headline
Psychologically distressing experiences in hospitals - Berghs et al. 2022

# data[].attributes.subject
Psychologically distressing experiences in hospitals - Berghs et al. 2022

# data[].attributes.body
lack of SCD knowledge, racism, unethical treatment

# data[].attributes.headline
Experiences with the health care system - Owoo and Tadros 2021

# data[].attributes.subject
Experiences with the health care system - Owoo and Tadros 2021

# data[].attributes.headline
Pain and Pain Medications - Brown et al. 2014

# data[].attributes.subject
Pain and Pain Medications - Brown et al. 2014

# data[].attributes.body
described the utility of pain medication and when the medications appeared ineffective

# data[].attributes.headline
An unexpected role as teacher - Campbell et al. 2010

# data[].attributes.subject
An unexpected role as teacher - Campbell et al. 2010

# data[].attributes.headline
Convincing the naysayers - Campbell et al. 2010

# data[].attributes.subject
Convincing the naysayers - Campbell et al. 2010

# data[].attributes.headline
"Their mistakes make me sick" - Campbell et al. 2010

# data[].attributes.subject
"Their mistakes make me sick" - Campbell et al. 2010

# data[].attributes.body
medical errors from lack of SCD knowledge

# data[].attributes.headline
Knowledge of disease through the embodied experience - Campbell et al. 2010

# data[].attributes.subject
Knowledge of disease through the embodied experience - Campbell et al. 2010

# data[].attributes.body
compelled to become their own experts

# data[].attributes.headline
Patient agency and making visible - Ciribassi et al. 2016

# data[].attributes.subject
Patient agency and making visible - Ciribassi et al. 2016

# data[].attributes.body
pressure to present suffering in a certain way

# data[].attributes.headline
Managing uncertainty and emotions - Carlson et al. 2022

# data[].attributes.subject
Managing uncertainty and emotions - Carlson et al. 2022

# data[].attributes.body
communication with provider is integral

# data[].attributes.headline
Impact of pain and hospitalization on the daily life of the child with sickle cell disease - Campelo et al. 2017

# data[].attributes.subject
Impact of pain and hospitalization on the daily life of the child with sickle cell disease - Campelo et al. 2017

# data[].attributes.body
isolation, sadness, denial

# data[].attributes.headline
Stigma in interactions with health care workers - Carvalho et al. 2021

# data[].attributes.subject
Stigma in interactions with health care workers - Carvalho et al. 2021

# data[].attributes.body
doubts about pain narratives and experience from providers

# data[].attributes.headline
Exchanging information - Carlson et al. 2022

# data[].attributes.subject
Exchanging information - Carlson et al. 2022

# data[].attributes.headline
Stigma coping strategies - Carvalho et al. 2021

# data[].attributes.subject
Stigma coping strategies - Carvalho et al. 2021

# data[].attributes.body
silencing problems to avoid labels and recurrence of discrimination

# data[].attributes.headline
Strategies of patients frequently admitted to hospital--Aggression - Maxwell et al. 1999

# data[].attributes.subject
Strategies of patients frequently admitted to hospital--Aggression - Maxwell et al. 1999

# data[].attributes.headline
Fostering Relationships - Carlson et al. 2022

# data[].attributes.subject
Fostering Relationships - Carlson et al. 2022

# data[].attributes.body
patient/family heard and invovled

# data[].attributes.headline
Experiences of persons with sickle cell disease - Strickland et al. 2001

# data[].attributes.subject
Experiences of persons with sickle cell disease - Strickland et al. 2001

# data[].attributes.headline
Experiences of hospital care -Neglect - Maxwell et al. 1999

# data[].attributes.subject
Experiences of hospital care -Neglect - Maxwell et al. 1999

# data[].attributes.body
disclosure of disease status, stigma in social institutions

# data[].attributes.headline
Visibility of a marked body - Ciribassi et al. 2016

# data[].attributes.subject
Visibility of a marked body - Ciribassi et al. 2016

# data[].attributes.body
mark of disease and care on body

# data[].attributes.headline
Delegitimization as Rendering Invisible in the Hierarchy of Care - Ciribassi et al. 2016

# data[].attributes.subject
Delegitimization as Rendering Invisible in the Hierarchy of Care - Ciribassi et al. 2016

# data[].attributes.headline
Experiences of hospital care-Control (including both over- and undertreatment of pain) - Maxwell et al. 1999

# data[].attributes.subject
Experiences of hospital care-Control (including both over- and undertreatment of pain) - Maxwell et al. 1999

# data[].attributes.headline
Dissatisfaction with hospital facilities - Saif 2022

# data[].attributes.subject
Dissatisfaction with hospital facilities - Saif 2022

# data[].attributes.headline
Experiences of hospital care- Stigmatization - Maxwell et al. 1999

# data[].attributes.subject
Experiences of hospital care- Stigmatization - Maxwell et al. 1999

# data[].attributes.headline
Stressful Experiences during Hospital Care  - Cole 2007

# data[].attributes.subject
Stressful Experiences during Hospital Care  - Cole 2007

# data[].attributes.body
pain not taken seriously, delays in provision of pain meds, doubts about nature of pain

# data[].attributes.headline
Patient perceptions of the cause of readmission - Stein et al. 2016

# data[].attributes.subject
Patient perceptions of the cause of readmission - Stein et al. 2016

# data[].attributes.headline
Hospital experiences - Thomas and Taylor 2002

# data[].attributes.subject
Hospital experiences - Thomas and Taylor 2002

# data[].attributes.body
drug seeking label

# data[].attributes.headline
Feeling out of place: unwelcoming adult wards - Renedo et al. 2019

# data[].attributes.subject
Feeling out of place: unwelcoming adult wards - Renedo et al. 2019

# data[].attributes.headline
Facilitators of care - Fearon et al. 2018

# data[].attributes.subject
Facilitators of care - Fearon et al. 2018

# data[].attributes.body
pain plans

# data[].attributes.headline
Healthcare system factors - del Pino-Jones et al. 2019

# data[].attributes.subject
Healthcare system factors - del Pino-Jones et al. 2019

# data[].attributes.body
lack of established relationship with PCP, relies more on hematologist

# data[].attributes.headline
Challenges of Readmission - del Pino-Jones et al. 2019

# data[].attributes.subject
Challenges of Readmission - del Pino-Jones et al. 2019

# data[].attributes.headline
Importance of patient/provider relationship - del Pino-Jones et al. 2019

# data[].attributes.subject
Importance of patient/provider relationship - del Pino-Jones et al. 2019

# data[].attributes.body
caregiver loss

# data[].attributes.headline
Relevance of psychosocial factors - del Pino-Jones et al. 2019

# data[].attributes.subject
Relevance of psychosocial factors - del Pino-Jones et al. 2019

# data[].attributes.body
need for social support

# data[].attributes.headline
Instances of justice and injustice interactions - Ezenwa et al. 2015

# data[].attributes.subject
Instances of justice and injustice interactions - Ezenwa et al. 2015

# data[].attributes.body
racism, bias, micro aggressions

# data[].attributes.headline
Increased knowledge of disease and management strategies - Utrankar et al. 2018

# data[].attributes.subject
Increased knowledge of disease and management strategies - Utrankar et al. 2018

# data[].attributes.headline
Delays in accessing analgesia - Knott et al. 2022

# data[].attributes.subject
Delays in accessing analgesia - Knott et al. 2022

# data[].attributes.headline
Interpersonal Relationships -- transition - Weisberg et al

# data[].attributes.subject
Interpersonal Relationships -- transition - Weisberg et al

# data[].attributes.headline
Management of sickle cell disease was further complicated by pandemic - Matthie et al. 2022

# data[].attributes.subject
Management of sickle cell disease was further complicated by pandemic - Matthie et al. 2022

# data[].attributes.headline
Patient choice in treatment - Johnson 2003

# data[].attributes.subject
Patient choice in treatment - Johnson 2003

# data[].attributes.headline
Discharge expectations - Dyal et al. 2019

# data[].attributes.subject
Discharge expectations - Dyal et al. 2019

# data[].attributes.body
wait times

# data[].attributes.body
process of care

# data[].attributes.headline
Interactions are memorable - Ezenwa et al. 2015

# data[].attributes.subject
Interactions are memorable - Ezenwa et al. 2015

# data[].attributes.headline
Internal Coping Strategies - Olwit et al. 2018

# data[].attributes.subject
Internal Coping Strategies - Olwit et al. 2018

# data[].attributes.headline
Invisible symptoms make it more challenging for needs to be met - Miles et al. 2020

# data[].attributes.subject
Invisible symptoms make it more challenging for needs to be met - Miles et al. 2020

# data[].attributes.headline
Strategies of patients frequently admitted to hospitals - Passivity - Maxwell et al. 1999

# data[].attributes.subject
Strategies of patients frequently admitted to hospitals - Passivity - Maxwell et al. 1999

# data[].attributes.headline
Resources for Pain Management - Stewart et al. 2021

# data[].attributes.subject
Resources for Pain Management - Stewart et al. 2021

# data[].attributes.headline
Abuse and shame - Williams-Gray and Senreich 2014

# data[].attributes.subject
Abuse and shame - Williams-Gray and Senreich 2014

# data[].attributes.headline
Strategies of patients frequently admitted to hospitals - Developing relationships - Maxwell et al. 1999

# data[].attributes.subject
Strategies of patients frequently admitted to hospitals - Developing relationships - Maxwell et al. 1999

# data[].attributes.headline
Patient's descriptions of concern-raising behavior in the hospital - Elander et al. 2004

# data[].attributes.subject
Patient's descriptions of concern-raising behavior in the hospital - Elander et al. 2004

# data[].attributes.body
analgesic delivery

# data[].attributes.headline
Reasons for admission - Dyal et al. 2019

# data[].attributes.subject
Reasons for admission - Dyal et al. 2019

# data[].attributes.headline
Patient-staff relationships - Johnson 2003

# data[].attributes.subject
Patient-staff relationships - Johnson 2003

# data[].attributes.body
PCA and provider interactions

# data[].attributes.headline
Outside stressors playing a major role in care  - O'Connor et al. 2014

# data[].attributes.subject
Outside stressors playing a major role in care  - O'Connor et al. 2014

# data[].attributes.headline
medical racial bias--pain discounted - Wakefield et al

# data[].attributes.subject
medical racial bias--pain discounted - Wakefield et al

# data[].attributes.headline
Interactions with Healthcare providers - O'Connor et al. 2014

# data[].attributes.subject
Interactions with Healthcare providers - O'Connor et al. 2014

# data[].attributes.headline
Patients' knowledge of their own needs is often disregarded - Miles et al. 2020

# data[].attributes.subject
Patients' knowledge of their own needs is often disregarded - Miles et al. 2020