Caregiving Research Research Articles

TARGETING AND APPROACHING LEGISLATURES TO SUPPORT FAMILY CAREGIVING: LESSONS LEARNED

Abstract The Caregiver Advise, Record, and Enable (CARE) Act has passed in 45 states and requires hospitals to ask patients if they have a family caregiver, notify that family caregiver about the patients upcoming discharge, and educate family caregivers how to provide the care the patient will need after discharge. Early research demonstrates that this Act has favorably influenced hospital and patient outcomes such as quality indicators and family caregiver confidence. Despite this research and widespread support, this Act has yet to be passed in Wisconsin. This presentation will report on lessons learned from a systematic method for targeting and approaching Wisconsin state legislatures within the Assembly Committee on Health, Aging, and Long-term Care. Interviews, fieldnotes, in-person visits, and telephone and email correspondences with legislatures were conducted to learn their perspectives on advancing family caregiving policy. Lessons learned from this systematic method for targeting and approaching legislatures included the timing of interactions matter, the use of concise language maximizes understanding, the mode of delivery impacts response rate, and the transformation of family caregiving research to infographics increases uptake. Findings from this work can be used to elevate family caregiving support by bridging the evidence to policy gap.

EXAMINING CAREGIVER NETWORK STRUCTURE, COMPOSITION, AND COORDINATION FOR OLDER ADULTS WITH ALZHEIMER’S DISEASE

Abstract Over half of the older adults with Alzheimer’s disease and related dementias (ADRD) live in the community with informal caregivers whose unpaid assistance constitutes the majority of their care. Research and interventions targeting caregivers typically limit their focus to one primary caregiver, but many older adults with ADRD rely on a variety of interconnected kin, non-kin, and professional supporters. Little is known about the structure, composition, or consequences of these caregiver networks. To address this gap, we conducted a social network analysis (SNA) of the caregiver networks of 23 older adults with ADRD receiving outpatient services at a Memory Disorder Clinic. SNA data was obtained through detailed social network interviews conducted one-on-one with self-identified primary caregivers. We find that adults with ADRD have an average of 7.7 caregivers in their networks. Quantitative analyses demonstrate that caregiver network properties (including size, density, composition, and care coordination) vary with the context of caregiving (including living situation, level of functional impairment, and use of formal services). An average network includes a roughly even mix of informal caregivers (3.2 members) and professional caregivers (3.5), but they occupy different network positions and fill distinct supportive roles. For example, informal caregivers engage in frequent care coordination, but coordination is comparatively uncommon between formal caregivers. This interdisciplinary research advances beyond the dyadic level of analysis typical of most caregiving research to comprehensively measure caregiver networks. Further, we identify variations in caregiver networks and quantify network-based task-sharing and care coordination among informal and professional caregivers.

RECRUITING THE MINORITIZED: AFRICAN AMERICAN BEREAVED DEMENTIA CAREGIVERS

Abstract Central to this project was recruiting and learning from African American people, who are underrepresented in Bereaved Dementia Caregiver research. Initially this project was conceptualized with the intent of recruiting a wide range of people of African or Caribbean descent, given the geographic presence of large contingents of African Immigrants in the Twin Cities of Minnesota. In talking to our community partners prior to launch, we elected to restrict participation to those who identified as, or identified as serving, African Americans specifically. Our recruitment strategies were largely informed by deep community engagement built through academic, personal, and non-profit partnerships over several years. We also sought to synergize recruitment efforts for this project with another effort targeting augmentations of dementia friendliness in local African American churches. In discussing recruitment strategies we also sought to hear from those who may not be those traditionally heard from. For instance, to include younger individuals, we recruited contacts through our local Alzheimer’s Association chapter’s Young Champions group. Likewise, because churches are often a major source of African American participant recruitment, we contacted individuals at the Volunteers of America to recruit. Finally, we intentionally broke our recruitment plan into stages (recruiting a handful of individuals at a time) to ensure that participants could nominate those they thought might be most important to hear from within their own communities. This intellectual humility was essential to doing this work properly and maximizing the potential of our results to help African American Bereaved Dementia Caregivers.

P108: Relational aspects in dementia family caregiving: exploring caregivers ́ self-perceived caring style and its correlates in the caregiving stress and coping process

Most research in dementia family caregiving field has been guided by the stress and coping model, which holds a caregiver-centered perspective look at the family caregiving scenario. This individualistic approach of mainstream caregiving research does not allow to explain the relational aspects and variables related to the interaction between caregivers and the person with dementia (PWD), which have been underexplored until today. However, more systemic and dyad-centered approaches are needed to enrich our understanding of this chronic stress scenario. How caregivers perceive their way of caring for the PWD may exert a central role in the stress and coping model, and it may be potentially related to characteristics of the PWD (problematic behaviors and functional capacity), and caregivers´ distress and coping variables. This study aimed to develop and test a valid and reliable instrument to measure caregivers´ self-perceived caring style and explore these potential associations.This communication will present preliminary evidence from family dementia caregivers who volunteered to participate and were interviewed to assess sociodemographic data, stressors, psychological outcomes (anxiety and depression) and the following interaction-related variables: self-perceived caregiving interaction style, expressed emotion and quality of the relationship in the dyad (past and present). A sample of 100 participants is expected, as the project is currently going on.The Caregivers´ Self-Perceived Caring Style Scale (SPCSS) has been developed to measure 6 potential aspects of caregivers’ way of caring for the PWD: calmness, tenderness/lovingness, acceptance/validation, control/structure, overprotection, hostility, and communication facilitation. Preliminary reliability and validity analyses support good psychometric properties of the scale, as well as significant correlations between the different styles of caring and characteristics of the PWD, caregivers´ gender and kinship with the PWD, depression and anxiety symptoms, quality of the dyad relationship and expressed emotion. Implications for caregiving research and for the development of effective interventions to alleviate caregivers´ distress will be discussed.

P109: The role of family caregivers’ emotional complexity in their relationship with the person with dementia and their emotional well-being and distress.

Objective:Research in informal dementia caregiving has focused on the negative outcomes it implies as a chronic stress situation, even though positive feelings derived from the caregiving experience are also reported. This co-occurrence of positive and negative experiences is a form of emotional complexity that has barely been explored in caregivers although it could be relevant for understanding caregivers' vulnerability to distress. To explore this emotional complexity, profiles of caregivers according to their levels of positive and negative affect were created and compared with regard to their reported anxiety, ambivalence feelings, experiential avoidance, quality of the actual relationship, thoughts of institutionalizing the person with dementia (PWD), and social support.Methods:363 primary family caregivers were distributed in groups based on their reported depressive feelings and positive emotions related to caregiving and the PWD. Four groups were identified: (1) flat (low negative affect, low positive affect), (2) negative (high negative affect, low positive affect), (3) positive (low negative affect, high positive affect), (4) mixed (high negative affect, high positive affect). ANOVAS were performed to explore differences between groups.Results:Caregivers in the positive and mixed profiles reported better actual relationships with the PWD and higher experiential avoidance. Caregivers with both negative and mixed profile showed higher anxiety than the other profiles, and the negative profile also reported higher thoughts about institutionalizing the care-recipient and more ambivalence. Caregivers in the positive group reported the highest social support.Conclusion:The obtained findings converge in the idea that caregivers ́ positive emotions towards the PWD are closely related to the quality of the relationship, and may be involved in a delayed decision to institutionalize her/him. The presence of negative affect (depressive feelings) is associated with anxiety symptoms, even when positive emotions are reported, supporting the high prevalence of anxiety-depressive comorbidity in this population. Finally, the negative profile (low positive and high negative affect) is the one that reports more ambivalence. Taken together, these findings suggest that caregiving for PWD should be considered an emotionally complex situation with positive affect derived from the caregiving being key in understanding caregivers’ well-being and distress.

"Caregiving made me grateful:” The unexpected blessings of dementia caregiving for Alaska Natives when given a second chance to care for a family member

AbstractBackgroundThere is a cultural value among Alaska Natives to care for their Elders and this commitment applies to all Elders, regardless of health status or cognitive health. Caregiver duties can lead to stress, isolation, and depression that negatively impact their overall health and wellbeing. Despite the challenges, these caregivers emphasized the unexpected blessings, which served as coping mechanisms and providing meaning and purpose to their caregiver role.MethodInterviews were conducted with 22 Alaska Native caregivers for Alaska Natives with Alzheimer’s Disease and Related Disorders (ADRD) in rural and urban communities across Alaska. Interviews lasted approximately 60 min and were transcribed verbatim. We employed directed content analysis to examine the caregivers’ experiences of ADRD and the unexpected blessings associated with being a caregiver.ResultAlaska Native caregivers shared the challenges associated with caregiving duties, and the lack of education, awareness, and available resources exacerbated their stress and challenges. As their family member experienced changes related to the ADRD, the blessings took different forms and served different purposes. Spending more time with their family member, remembering family history, engaging in generative behaviors, and strengthening intergenerational relationships were the most frequently discussed blessings. Focusing on these blessings enabled caregivers to continue to find meaning in this role and carry on their cultural values and traditions.ConclusionThis study shifts the focus of caregiving research to highlight the unexpected blessings. The focus on strengths of caregiving and sharing these stories has the potential to provide current and future caregivers to step into this role with a different perspective, or at least not just hear of the challenges and barriers associated with ADRD caregiving.

Socioenvironmental, Stigma, Risk, and Protective Factors Associated With the Health of Latino LGBTQ+ Dementia Caregivers

AbstractBackgroundCompared with caregivers of individuals with other chronic conditions, dementia caregivers experience worse emotional and physical health and are twice as likely to say their health has declined due to caregiving. Both Latino and LGBTQ+ populations are underrepresented in dementia caregiving research, though both populations report a higher prevalence of informal caregiving compared with their non‐Latino White and non‐LGBTQ+ counterparts. We aimed to examine associations between socioenvironmental, stigma, risk, and protective factors and global health among Latino LGBTQ+ caregivers of people with dementia.MethodData came from a cross‐sectional online survey using a non‐probabilistic sample of English‐proficient, Latino LGBTQ+ dementia caregivers recruited via social media (n = 103). We examined associations using bivariate analyses.ResultLatino bisexual respondents reported better global health than Latino gay and lesbian respondents. Females had better health than males and transgender respondents reported poorer health than cisgender respondents. Millennials had worse health than Generation X respondents. There were positive associations between global health and months providing care, lifetime discrimination, day‐to‐day discrimination, lifetime victimization, and microaggressions and negative associations between self‐efficacy for surrogate decision making and family quality of life. Respondents providing care to a spouse (versus a parent, another relative, or friend), those living with their care recipient, those who had been asked by a provider whether they needed help caring for themselves or their care recipient, and respondents who had requested information about financial help for their care recipient had better health. Respondents whose care recipients had advanced directives had poorer health than those who did not.ConclusionSeveral socioenvironmental, stigma, risk, and protective factors were associated with the global health of Latino LGBTQ+ dementia caregivers. Latino LGBTQ+ dementia caregivers may be exhibiting signs of resiliency, for example when it comes to discrimination and caregiving demand, and seeking help may be important for their health. Some associations may be confounded by other factors and more research is needed to understand the pathways by which these factors ultimately influence the health of Latino LGBTQ+ dementia caregivers.

Abstract 15394: Caregivers’ Growing Contributions to Heart Failure Self-Care: An Updated Systematic Review

Introduction: In 2015, a seminal systematic review captured the body of literature surrounding the contributions of family caregivers to heart failure (HF) self-care. Since then, the body of HF caregiving research has expanded, necessitating an updated systematic review to inform research, practice, and policy. Goals: To provide an updated systematic review of the empiric literature on informal, unpaid caregivers contributions to HF patients’ self-care. Research Questions: 1) What specific activities do caregivers of people with HF take part in related to HF self-care?; 2) Have these caregiving activities changed over time?; 3) What are the gaps in the science? Methods: The review followed PRISMA guidelines; the protocol was pre-registered in PROSPERO. Comprehensive database search strategies were developed (PubMed, CINAHL, Embase, and Cochrane CENTRAL). The team independently screened and abstracted data; quality was assessed using CASP checklists. Meta-synthesis techniques using critical realist approaches were used to interpret activities, then relationships were analyzed. During data synthesis, activities were benchmarked against the Theory of Self-care in Chronic Illness (TSCI). Results: In total, 2154 research reports were identified, 64 of which were eligible for inclusion (2013-2022). Caregiver contributions to HF self-care activities occurred in TCSI domains of self-care maintenance (91%), monitoring (54%), and management (46%). Activities performed directly on or to the patient were reported more frequently than those performed for the patient. Frequently reported activities like transportation and activity of daily living are not included by the TCSI. Gaps due to ambiguous activity descriptions, inadequate caregiving time quantification, and underrepresented monitoring, supportive, and communication activities were elucidated. Conclusions: Findings support updating the TSCI to include activities antecedent to HF self-care. Identified gaps highlight the need to define specific caregiving activities, determine caregiver task difficulty and burden, and identify caregiver self-care strategy and education needs. The critical need to expose the hidden work of caregiving is essential to inform policy and practice.

Opportunities in Multiple Sclerosis Care Partner Research: An Interview

INTRODUCTION Guest editor Marcia Finlayson, PhD, OT Reg (Ont), OTR, is a professor in the School of Rehabilitation Therapy at Queen’s University in Ontario, Canada. She began her career as a clinical occupational therapist and shifted to a research career focused on generating and sharing knowledge to help people affected by multiple sclerosis (MS) lead healthy, meaningful lives with control over their participation in daily activities, at home and in the community, particularly as they age. For this special issue on caregiving in MS, she chose to interview Kenneth Pakenham, PhD, emeritus professor of clinical and health psychology at the University of Queensland in Brisbane, Australia. For more than 4 decades, he has investigated the psychological well-being welle-eing of caregivers, including coping mechanisms and innovative interventions to improve their quality of life. His work is dedicated to applying positive health frameworks to chronic illnesses and to empowering caregivers and individuals with MS. Together, their expertise illuminates the multifaceted challenges and opportunities in MS caregiving research and understanding.

Community-Engaged Research With Latino Dementia Caregivers: Overcoming Challenges in Community Advisory Board Development.

Latinos caring for a person with Alzheimer's disease and related dementias (ADRD) have the highest prevalence of caregiving. Yet, they are less likely to benefit from evidence-based interventions given their continued underrepresentation in ADRD-related research. Community advisory boards (CABs) have the potential to address barriers to research for underrepresented communities; however, there are complexities to establishing and sustaining CABs. This article describes how our work addressed challenges in CABs related to unbalanced power relations, language barriers, the value of time, and low research knowledge and health literacy. Nine Latino CAB members, including older Latino caregivers, were trained in a comprehensive program designed to increase knowledge about health research methods and ethics, cognitive health, and cultural adaptation methods. Members completed pre- and post-training measures of Alzheimer's disease knowledge, attitudes, and beliefs toward research, and a satisfaction survey. Results from the satisfaction questionnaire indicated that the program was well received. CAB members increased their knowledge regarding the management of behavioral and psychological symptoms of dementia and dementia-associated risk factors and treatment. Positive changes in members' attitudes toward research included increased willingness to participate in trials and subject protection measures. Formalized training in research conduct and ethics and health literacy is a promising strategy to reduce challenges in establishing and maintaining CABs and can also optimize CAB impact to address gaps in older Latino ADRD caregiving research.

Effectiveness of online psychological intervention for caregivers on the quality of life of people with Alzheimer disease: a randomized clinical trial protocol

Background: Alzheimer's disease (AD) has a significant impact on the quality of life (QOL) and interventions aimed at their improvement show inconclusive results. Objectives were study protocol to evaluate the effectiveness of a multicomponent caregiver intervention on the QOL of persons with AD. Methods: The design is a randomized clinical trial with blinded assessment of response variables. Ninety-four dyads of informal caregivers and their relatives with AD will be recruited in the Osona and Ripollès territorial service of geriatrics and palliative care of the Consorci Hospitalari de Vic (Osona, Spain) and randomized into experimental (EG) and control group (CG). An 8-week online multicomponent psychological intervention including psychoeducation and mindfulness will be provided to the EG caregivers. The CG will perform the usual care. Outcome will be the QOL of persons with AD assessed with the QOL-AD. Conclusions: The multicomponent online caregiver research detailed in this protocol could be incorporated into health and care facilities for persons with AD and their families to improve caregiving and QOL.

Challenges, rewards, and lessons learned from family and community caregivers of individuals with serious mental illness and cancer.

The caregiving experience for individuals with serious mental illness (SMI) and cancer has not been explored in previous cancer caregiver research. This study assessed the challenges, rewards, and lessons learned from this unique population of caregivers. We conducted qualitative interviews with 13 caregivers (9 family caregivers, 4 community caregivers) of patients recently diagnosed with head and neck, breast, lung, or gastrointestinal cancer and SMI who participated in a single-arm pilot of person-centered collaborative care. Interviews were transcribed and analyzed using inductive and deductive approaches. Investigators developed a coding scheme based on the interview guide. Interviews were double-coded and themes were identified via an iterative consensus process consistent with a content analysis framework. Comparisons between community and family caregiver experiences were explored. Caregiving challenges included the impact of mental health symptoms on timely diagnosis, treatment, and coordination of care and lack of resources specific to SMI and cancer caregiving. Family caregivers valued increased closeness and meaningfulness in their relationships. Family and community caregivers found it rewarding to be part of a person-centered care model that was effective for the patient. Lessons learned included tending to their own needs too, and the importance of advocacy and a team approach to decrease mental health stigma and coordinate care. This study highlights the complex challenges and rewards experienced by family and community caregivers for individuals with cancer and SMI. Tailored approaches to support caregivers as individuals are needed. Additional research on community caregiver-patient dyads and non-spousal family caregiver-patient dyads are needed to inform intervention development.

Family caregiver roles and challenges in assisting patients with cancer treatment decision-making: Analysis of data from a national survey.

We aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision-making. Family caregiver-reported data were analyzed from a national survey conducted in the United States by CancerCare® (2/2021-7/2021). Four select-all-that-apply caregiver roles were explored: (1) observer (patient as primary decision-maker); (2) primary decision-maker; (3) shared decision-maker with patientand (4) decision delegated to healthcare team. Roles were compared across five treatment decisions: where to get treatment, the treatment plan, second opinions, beginning treatmentand stopping treatment. Ten challenges faced by caregivers (e.g., information, cost, treatment understanding) were then examined. χ2 and regression analyses were used to assess associations between roles, decision areas, challengesand caregiver sociodemographics. Of 2703 caregiver respondents, 87.6% reported involvement in patient decisions about cancer treatment, including 1661 who responded to a subsection further detailing their roles and challenges with specific treatment decisions. Amongst these 1661 caregivers, 22.2% reported an observing role, 21.3% a primary decision-making role, 53.9% a shared decision-making roleand 18.1% a role delegating decisions to the healthcare team. Most caregivers (60.4%) faced ≥1 challenge, the most frequent being not knowing how treatments would affect the patient's physical condition (24.8%) and quality of life (23.2%). In multivariable models, being Hispanic/Latino/a was the strongest predictor of facing at least one challenge (b = -0.581, Wald = 10.69, p < .01). Most caregivers were involved in patients' cancer treatment decisions. The major challengewasnot understanding how treatments would impact patients' physical health and quality of life. Challenges may be more commonly faced by Hispanic/Latino/a caregivers. The CancerCare® survey was developed in partnership with caregiving services and research experts to describe the role of cancer family caregivers in patient decision-making and assess their needs for support. All survey items were reviewed by a CancerCare advisory board that included five professional patient advocates and piloted by a CancerCare social worker and other staff who provide counselling to cancer caregivers.

Social support and subjective well-being of noncustodial grandparent caregivers in urban China: The mediating roles of generative acts

While social support is generally beneficial, it remains unclear how it directly and indirectly affects subjective well-being among grandparents via generative acts. Multi-stage cluster random sampling was employed in a city in Eastern China, reaching 1013 noncustodial grandparent caregivers of kindergarten children (mean age = 58.3, range: 40-93, female = 71.9%, non-local = 508). Data were analyzed using structural equation modeling (SEM). The results reveal that social support positively affected three indicators of subjective well-being among noncustodial grandparent caregivers. Also, social support worked through agentic generative acts to positively affect life satisfaction and positive affect, while not through domestic generative acts. The present study contributes to grandparent caregiving research in urban China by advancing an integrated framework that considers the mechanism of generative acts. Policy and practice implications are also discussed.

Asian Americans and Pacific Islanders’ preferences in recruitment strategies/messaging for participation in a research recruitment registry for Alzheimer’s disease and related dementias, aging, and caregiving research: A discrete choice experiment survey

AbstractBackgroundUnderrepresentation of Asian Americans and Pacific Islanders (AAPIs) in research requires urgent attention. The Collaborative Approach for AAPIs Research and Education (CARE) registry aims to increase AAPIs’ representation in research. We report results from a multilingual discrete choice experiment (DCE), an innovative method to determine older AAPIs’ preferences for tailored recruitment strategies and messaging.MethodsInitial DCE recruitment strategy/messaging attributes and attribute levels were selected based on feedback from CARE focus groups. A pilot study (16 participants from 7 AAPI cultural groups) refined attribute wording and levels. The final DCE survey was translated into Simplified and Traditional Chinese, Korean, and Vietnamese. CARE academic and community partners recruited participants (AAPIs aged ≥50 years) for the survey, asking them to select their preference in each of 12 pairs of recruitment strategies (randomly selected from 48 different combinations) of three attributes: (1) from whom they would like to learn about CARE; (2) what would motivate them to join CARE; and (3) how they would prefer hearing about CARE. A custom Qualtrics survey displayed image pairs of randomly selected messaging combinations. Analyses utilized conditional logistic regression models to estimate odds ratios with 95% confidence intervals.ResultsA total of 356 (mean age = 65.0; range: 50‐93) participants from 7 AAPI cultural groups (Asian Indian, Chinese, Filipino, Japanese, Korean, Samoan, and Vietnamese) completed the survey. Overall, participants had similar preferences for learning about CARE between community organizations and the healthcare community, however, participants preferred learning about CARE from the healthcare community (e.g., doctors, clinics) relative to community champions and faith‐based organizations. Participants were more motivated to join CARE to help advance research relative to sharing personal experiences; and preferred to hear about CARE via social media and instant messaging relative to a flyer or workshop/seminar. Importantly, preferences varied by age, cultural group, survey completion language, and whether the participant received assistance with the survey.ConclusionsTo our knowledge, this is the first study using a DCE approach to elicit preferences for registry recruitment strategies among AAPIs. Findings will inform appropriate tailoring of recruitment strategies/messaging to successfully engage AAPI participants in a registry for ADRD research.aging after age 90.

Alzheimer's Disease and Related Dementias: Caregiver Perspectives on Hospice Re-Enrollment Following a Hospice Live Discharge.

Background: The number of individuals dying of Alzheimer's disease and related dementias (ADRDs) is steadily increasing and they represent the largest group of hospice enrollees. In 2020, 15.4% of hospice patients across the United States were discharged alive from hospice care, with 5.6% decertified due to being "no longer terminally ill." A live discharge from hospice care can disrupt care continuity, increase hospitalizations and emergency room visits, and reduce the quality of life for patients and families. Furthermore, this discontinuity may impede re-enrollment into hospice services and receipt of community bereavement services. Objectives: The aim of this study is to explore the perspectives of caregivers of adults with ADRDs around hospice re-enrollment following a live discharge from hospice. Design: We conducted semistructured interviews of caregivers of adults with ADRDs who experienced a live discharge from hospice (n = 24). Thematic analysis was used to analyze data. Results: Three-quarters of participants (n = 16) would consider re-enrolling their loved one in hospice. However, some believed they would have to wait for a medical crisis (n = 6) to re-enroll, while others (n = 10) questioned the appropriateness of hospice for patients with ADRDs if they cannot remain in hospice care until death. Conclusions: A live discharge for ADRD patients impacts caregivers' decisions on whether they will choose to re-enroll a patient who has been discharged alive from hospice. Further research and support of caregivers through the discharge process are necessary to ensure that patients and their caregivers remain connected to hospice agencies postdischarge.

Inequities Among Cancer Caregivers with Diverse Identities: A Review of the Literature and Future Directions.

The number of older adults with cancer relying on support from caregivers continues to increase. Health disparities in older adults with cancer often extend to their caregivers. This review aims to assess the state of cancer caregiving research in historically underrepresented diverse populations and provide recommendations for future research and policy. Research on caregivers of older adults with cancer from diverse backgrounds has primarily been descriptive. Health disparities for historically underrepresented caregivers (LGBTQ + , BIPOC, rural, young adults, youth) exist across several dimensions (e.g., financial, mental, and physical health, and access to caregiver support). Few published studies have closely examined the unique experiences of these caregivers nor provided culturally appropriate tailored interventions. Health equity research within caregiving populations is in its infancy. Priorities for future work should focus on identifying modifiable targets for intervention, changing systems-level processes in acknowledging and supporting caregivers, and creating policies that reduce financial inequities of caregiving.

A Partial Picture, Without a Frame: Measuring Quality of Life in Cystic Fibrosis Caregivers

ABSTRACT Background Significant advances in the treatment of Cystic Fibrosis (CF) have extended life expectancy, increasing the number of CF caregivers who deliver demanding daily treatment regimens and manage uncertainty. With the impact these changes have on CF caregivers, it is critical to understand CF caregiver quality of life (QoL). Purpose To examine how QoL is measured in CF caregiver research and identify which QoL domains from the World Health Organization (WHO) framework are represented in CF caregiver QoL outcomes. Methods Literature published from 2003 to the present was searched to identify all relevant articles in online academic databases related to measurement of CF caregiver QoL. Results Findings suggest there is inconsistency within QoL measurement with CF caregivers and no existing scale accounts for all aspects of CF caregiver QoL from the WHO’s framework. Discussion The disconnect between how CF caregiver QoL is measured and how it is defined presents a challenge in utilizing information gleaned to best provide targeted and relevant services and resources to CF caregivers. Translation to Health Education Practice: A better understanding of caregiver QoL across all WHO domains will allow development of targeted programs to adequately address challenges for CF caregivers.

Toward a more comprehensive understanding and support of parents with a child experiencing an eating disorder.

The majority of eating disorder (ED) carer research has been conducted with parents of adult patients, using qualitative methodologies, focusing on carer burden and distress during treatment. This article aimed to use results from a large, national, quantitative survey of parents of child or adolescent patients as a springboard for encouraging a more comprehensive investigation of parent experiences. The online survey assessed treatment experiences and parent distress (DASS-21) but also less commonly investigated topics including symptom detection, experiences with primary care providers, and impacts on parent physical and psychological health, romantic relationship, finances, and employment. Key findings included parents (N=439; 91.6% female): were the first person to notice the ED symptoms in 81.8% of cases; had only a 14.7% chance of a helpful experience with both the first general practitioner and first therapist they saw; needed to see M=3.55 therapists before finding one that could help; reported worse than normal psychological health (96.0%), physical health (70.5%), and romantic relationship (92.7%); required M=70.06 days leave from work to care for their child (per household); and 91.8% accessed treatment in the private sector with median out-of-pocket expenses of AUD 10,0001-AUD 20,000. Recommendations to address research and practice gaps include: increased focus on supporting initial symptom detection; improving primary care and treatment experiences; and, increasing the number of ED treatment providers. Urgently needed are solutions to the overwhelming demand for services and clearly, more support for parents. Such strategies are vital for reducing the overall burden of EDs. Most eating disorder (ED) caregiver research has focused on experiences of supporting adult patients during treatment. This article used a large national survey to explore parent experiences of their child or adolescent's ED in less commonly investigated areas, such as detection, primary care, impact on parent physical and psychological health, romantic relationship, employment and finances. Findings suggested mixed experiences with health care providers and a very significant toll of the illness on the domains measured. Recommendations were provided for how these important areas can be addressed.

A Bibliometric Analysis of Stroke Caregiver Research from 1989 to 2022

Many stroke survivors suffer with varying degrees of disability and require assistance. Family members commonly act as informal caregivers, caring for these stroke survivors and ensuring care adherence. However, many caregivers reported a poor quality of life and physical and psychological distress. Due to these issues, multiple studies have been conducted to understand the experience of caregivers, the outcomes of caregiving, and interventional studies among caregivers. This study aims to explore the intellectual landscape of studies on stroke caregivers using bibliometric analysis. Studies with "stroke" and "caregiver" terms in the title were extracted from the Web of Sciences (WOS) database. The resulting publications were analysed using the 'bibliometrix' package in R. There were 678 publications analysed, dating from 1989 to 2022. The USA has the highest number of publications (28.6%), followed by China (12.1%) and Canada (6.1%). The most productive institution, journal and author were The University of Toronto (9.5%), 'Topics in Stroke Rehabilitation' journal (5.8%) and Tamilyn Bakas (3.1%), respectively. Co-occurrences keywords analysis revealed mainstream research on stroke survivors, burden, quality of life, depression, care, and rehabilitation, reflecting the timeless hotspot in the field. This bibliometric analysis helps us understand the current state of stroke caregiver research and its recent developments. This study can be used to evaluate research policies and promote international cooperation.