Young Spouses' Experiences of Having a Partner With Heart Disease and Adolescents Living at Home.

AIM: To describe the life situation of spouses having a partner with heart disease and adolescents living at home. DESIGN: Qualitative inductive design. METHOD: Participants (n = 22) were included from three Scandinavian countries. Semi-structured interviews were analysed using thematic analysis with an inductive and latent approach. RESULTS: Three themes were derived. 'Being in spousal and parental role transition' described how daily life had been affected and parental responsibilities had been doubled due to their partner's heart disease. 'Living with unpredictability and insecurity' included how the unpredictable illness trajectory caused worries and affected the well-being of the family. 'Managing a challenging life situation' highlights how spouses coped with their partners' heart disease and adapted to a new life situation. CONCLUSION: Young spouses' life situation was greatly affected by their partner's heart disease, resulting in increased responsibilities and double parenthood. Having a positive attitude and mindset towards life was used as a strategy to cope with the changed life situation and find a new way of life. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: All family members are affected by heart disease. Spouses needed additional professional support and guidance on how to involve the children when a parent is ill. IMPACTS: This study highlights how young spouses, with adolescents living at home, experience their life situation. The life situation is unpredictable due to the partner's heart disease, as they must handle both caring for their partner and taking on double parenthood. Research involving family members can improve person- and family-centred care and treatment outcomes in health care and society. REPORTING METHOD: COREQ checklist was used preparing the manuscript. PATIENT OR PUBLIC CONTRIBUTION: Data collection included interviews with spouse. WHAT DOES THIS PAPER CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: By highlighting the spouses changed life situation due to heart disease and the importance of including them in health care.

Social support as perceived, provided and needed by family-members of migrants with type 2 diabetes - a qualitative study.

BACKGROUND: Social support provided by a family member has been found to have a buffering effect on distress and is associated with better diabetes self-care. This study explores the meaning of social support, as described by close family members of foreign-born people living with type 2 diabetes (PWDM) in Sweden. It also explores the support provided by family members, and the support they need to be able to support the PWDM. METHODS: Qualitative explorative study, semi-structured interviews for data collection. Qualitative content analysis based on a theoretical framework on social support. Purposive sample of 13 family members, 18-52-years-old, born in countries in the Middle East, Africa, and Russia. RESULTS: The meaning of support was described as social and emotional. Most participants described a stressful situation; feelings of sadness/worry about the risk of the PWDM developing complications added to a strained life situation from which one could not opt out. Frequent daily contacts in a family network were evident, particularly by children trained as healthcare professionals. Caring for a family member was considered a filial piety, but it was also a chance to reciprocate. The support provided was mainly informational (e.g., reminders about nutritional intake), but it was also instrumental/practical (administering medicines, helping with economy/logistics, planning/cooking meals, basic care) and emotional (sharing meals, thoughts, and activities). The support the family members needed was getting first-hand information by attending the physician visits, being able to book appointments themselves at suitable times, and preventing the withholding of important information about the PWDM. They also desired an open telephone-line, oral and written information, particularly on diet. CONCLUSIONS: To family-members, supporting the PWDM was normal and a filial piety. Support provided and needed was not only informational but also instrumental/practical and emotional. In diabetes care, addressing foreign-born individuals, diabetes education needs to be developed, also including family members. Informational material, particularly on diet, and improved access to healthcare and information about the healthcare system have the potential to increase family members' control over the situation and prevent a negative trajectory in caregiving with perceived demands causing high levels of stress.

Patients and informal caregivers in the lead: a qualitative study on the experiences of patients, informal caregivers, and healthcare professionals with involvement in treatment, e-health and self-management programs.

BACKGROUND: A significant proportion of patients and informal caregivers favor an active role in decisions concerning their health. Simultaneously, governments aim to shift treatment from a professional care setting to a community setting, in light of an ageing population, a decreasing number of health workers and allocation of scarce resources. This transition of care solicits patients' and informal caregivers' ability to self-manage. Therefore, the Maastricht University Medical Centre + has established the Academy for Patients and Informal caregivers. The aim is to proactively and professionally support patients and their informal caregivers to enhance their self-management. For that, the Academy offers activities in three categories: (1) instruction of nursing techniques, (2) training of e-health competencies and (3) the provision of self-management programs. Both patients with an episodic care need, as well as patients and informal caregivers with chronic illness, are eligible to participate in the Academy's activities. However, little is known about the experience of these interventions from the perspective of patients, informal caregivers and healthcare professionals. METHODS: We conducted semi-structured interviews with 15 patients, 8 informal caregivers and 19 health care professionals who either participated in, referred to or received patients from the Academy. Topics revolved around self-management and the Quadruple aim, covering topics such as patient experiences, healthcare costs, health and well-being of the population and improving work life for health professionals. Data were analyzed using thematic analysis. RESULTS: Patients and caregivers experienced an increase in the ability to manage health needs independently, leading to increased mental well-being and self-efficacy. They felt recognized as partners in care, although managing illness needs came with its own burdens. Health care professionals indicated that they felt assured of the quality, uniformity and availability of activities due to its central organization, with instruction nurses finding greater meaning in their work. On the level of health care systems, participants in this study mentioned a decrease in use of formal healthcare, whilst enabling a more equitable division of care. CONCLUSION: Stakeholders' experiences with the Academy for Patients and Informal caregivers indicate that participation contributes to development of self-management, whilst also improving working conditions, reducing the appeal to formal care and advancing equity in healthcare. The burden for patients and informal caregivers is to be considered in future developments.

Care Partner Perspectives on the Use of a Patient Portal Intervention to Promote Care Partner Identification in Dementia Care.

Care partners are crucial to supporting the complex health needs of older adults with dementia, but they are not systematically identified in care delivery. As part of a real-world implementation project in geriatric primary care, we adapted a portal-based agenda setting intervention, OurNotes, by incorporating items to help care partners self-identify. Semi-structured interviews were conducted with care partners (N = 15) who completed the adapted OurNotes to explore their perceptions of the tool (usability, benefits, and challenges) and recommendations for refinement. The data were analyzed using thematic analysis. Benefits included enhancing care partners' preparedness for the visit and opening a direct channel to express concerns about patients' cognition and memory loss to clinicians. Challenges pertained to clinician responsiveness; recommendations focused on enabling the submitted OurNotes responses to be edited and updated by multiple care partners. Such refinements may help to maximize the impact of adapted OurNotes' and potential for future implementation and dissemination.

Knowledge and practice of informal caregivers on pressure injury prevention and treatment among patients receiving palliative care.

BACKGROUND: Pressure injuries (PIs) are prevalent in palliative care. Lack of knowledge and skills among informal caregivers on PI prevention and management contributes significantly to the occurance or deterioration of PIs. AIM: The aims of this study were to: (1) determine the level of knowledge and practices of informal caregivers on PI prevention and treatment; (2) explore the socio-demographic characteristics of informal caregivers that influence PI prevention and treatment among patients who need palliative care. METHODS: The quantitative cross-sectional descriptive design was used to collect data from 146 informal caregivers, and a valid and reliable questionnaire was used. RESULTS: A total of 146 informal caregivers of patients with PI completed the study. Most participants had a relatively low level of PI prevention, treatment knowledge and practice. Participants who were older than 28 years, working for the government and married had significantly better knowledge and practice of PI prevention and treatment than other participants. CONCLUSION: Information for informal caregivers in different settings about PI prevention and treatment is needed. Informal caregivers need to acquire more professional practices and knowledge to improve the quality of patient care.

Capturing the perspectives of African American informal dementia caregivers: a phenomenological study.

Dementia can be overwhelming to families and their caregivers. Informal caregiving is a widespread mode of providing dementia care in African American communities, yet impact of caregiving on informal or family caregivers in African American communities is burdensome. This study aimed to describe the lived experiences of informal caregivers of African American People Living with Dementia (PLWD) to understand their perceptions of dementia and dementia care, caregiver support needs, and service needs. Interpretive phenomenological qualitative inquiry guided this study to understand caregivers' experiences and needs. Ten family caregivers of African American PLWD in the community participated in this study. Data were collected through in-depth interviews and a diary study approach to document and interpret caregivers' experiences. The data analysis was based on procedures of content analysis. Four major themes emerged from the in-depth interviews: caregiver burden, familism, lack of information and community-based resources, and desire and need for culturally appropriate community-based resources. Triangulated diary entry data complemented the in-depth interviews with similar themes. This study highlights how African American informal caregivers of PLWD face various caregiving needs and challenges in dementia care including lack of culturally appropriate community resources and information. The study illustrates that African American cultural beliefs of familism are significant aspects of their caregiving experience and their coping strategies. These study results provide a useful foundation for various stakeholders to develop culturally targeted interventions and programs to support African American informal caregivers and their family members with dementia.

Addressing loneliness and social isolation through the involvement of primary and secondary informal caregivers in nursing homes: a scoping review.

OBJECTIVES: To clarify the mechanisms of interventions addressing loneliness and social isolation in older adults living in nursing homes through the involvement of primary and secondary informal caregivers. METHODS: This scoping review was performed by two independent reviewers, covering the period between 2011 and 2022 and the databases MEDLINE, CINAHL, PsycINFO and Scopus. It included terms related to (A) informal caregivers, (B) nursing homes, (C) psychosocial interventions, (D) involvement and (E) social isolation or loneliness. RESULTS: Thirty-three studies met the inclusion criteria. Although there were various definitions and assessment tools related to social isolation and loneliness, the studies referred to three dimensions of these concepts in nursing home residents: the quantity of social interactions, the perception of these encounters and biographical changes in social relationships. Most studies did not explicate the mechanisms of these interventions. The review uncovered the following aspects of intervention mechanisms: increasing opportunities for social contact, creating meaningful encounters, maintaining existing relationships with primary informal caregivers and establishing new ones with secondary informal caregivers. CONCLUSION: Studies reporting on interventions addressing loneliness and social isolation in nursing home residents need to clarify and detail their intervention mechanisms in order to foster more targeted interventions. In addition, there is a need for further research on large-scale programs or care philosophies in this field and the development of intervention designs, which allow for tailored intervention formats in order to respond to the individual perception of social relationships.

Programmes Addressed to Informal Caregivers' Needs: A Systematic Literature Review.

BACKGROUND: Addressing informal caregivers' needs is essential for ensuring quality healthcare and promoting citizen-centred care. This systematic review assessed current knowledge about programmes aimed at meeting the needs of informal caregivers of adults who are dependent on others for daily life activities. METHODS: Following the PRISMA guidelines, the electronic databases EBSCOhost Research Platform, MEDLINE, CINAHL, Scopus, Web of Science and The Virtual Health Library were searched for randomized experimental studies published between 2012 and 2022 that implemented programmes addressing informal caregivers' needs to improve their experiences, health, and well-being. Quality was assessed using the standardized critical evaluation tools from the Joanna Briggs Institute. Two independent investigators performed the eligibility assessment and data extraction. Quantitative data on the effectiveness of interventions were collected, and the content of each intervention was synthesized and aggregated into categories, through narrative synthesis. RESULTS: The majority of the included studies (n = 16) were conducted in European countries and implemented a structured intervention programme compared to the provision of usual care. The studies were of fair to high methodological quality, with a higher risk of bias related to blinding. The results supported the achievement of favourable health outcomes among informal caregivers, namely improvements in mental health (n = 3) and quality of life (n = 3) and a decrease in psychological symptomatology (n = 5) and burden (n = 3). None of the interventions reported adverse outcomes; however, five studies did not describe significant differences in the outcomes assessed after the implementation of the programmes. Interventions focusing on training and educating caregivers (n = 14) and cognitive-behavioural strategies (n = 7) were the most common, while programmes focusing on emotional and psychological support as a resource to improve caregivers' psychological outcomes were scarce. CONCLUSIONS: This systematic review adds to the growing body of evidence and insight showing that programmes that address informal caregivers' needs seem to contribute to better physical and psychological health outcomes through the promotion of caregivers' educational support and the implementation of cognitive-behavioural strategies. Future research should implement methodologically robust cross-country programmes tailored to informal caregivers' physical, emotional, psychosocial, societal, and educational needs throughout the care trajectory.

Impact of care-recipient relationship type on quality of life in caregivers of older adults with dementia over time.

BACKGROUND: Dementia caregiving is a dynamic and multidimensional process. To gain a comprehensive understanding of informal caregiving for people living with dementia (PLWD), it is pivotal to assess the quality of life (QoL) of informal caregivers. OBJECTIVE: To evaluate whether the care-recipient relationship type predicts changes in the QoL of informal caregivers of PLWD over a two-year period. METHODS: This was a secondary analysis of longitudinal data. The data were drawn from two waves of linked data from the National Health and Aging Trends Study (NHATS) and the National Study of Caregiving (NSOC) (2015: NHATS R5 & NSOC II; 2017: NHATS R7 & NSOC III). Caregivers were categorized into spousal, adult-child, "other" caregiver and "multiple" caregivers. QoL was assessed through negative emotional burden (NEB), positive emotional benefits and social strain (SS). Generalized estimating equation modelling was used to examine changes in caregivers' QoL outcomes across types of relationship over time. RESULTS: About, 882 caregivers were included who linked to 601 PLWD. After adjusting caregivers' socio-demographics, "other" caregivers had lower risk of NEB and SS than spousal caregivers (OR = 0.34, P = 0.003, 95%CI [0.17, 0.70]; OR = 0.37, P = 0.019, 95%CI 0.16, 0.85], respectively), and PLWD's dementia status would not change these significance (OR = 0.33, P = 0.003, 95%CI [0.16, 0.68]; OR = 0.31, P = 0.005, 95%CI [0.14, 0.71], respectively). CONCLUSIONS: The study demonstrates that spousal caregivers face a higher risk of NEB and SS over time, underscoring the pressing need to offer accessible and effective support for informal caregivers of PLWD, especially those caring for their spouses.

Views of aging and mental health - The role of informal care provision: Longitudinal findings of the health and retirement study in the US.

BACKGROUND: Informal care is a common form of social support, which can vary greatly in its intensity. While views of aging have shown to be relevant to mental health before, we aim to analyze whether the association between views of aging and depressive symptoms is influenced by the provision of informal care and its intensity. METHODS: Data of six waves of the Health and Retirement Study in the United States was used. The sample includes up to 41,058 observations pooled over six waves of community-dwelling adults aged ≥50 years. Depressive symptoms were measured with the Center for Epidemiologic Studies Depression Scale (CESD) and attitudes towards own aging (ATOA) with the Philadelphia Geriatric Center Morale Scale (higher score indicates positive attitudes); informal caregiving (no/yes) and caregiving intensity (moderate, intense) were surveyed. Adjusted fixed effects regression analysis with robust standard errors, and with caregiving as moderator variable were calculated. RESULTS: Informal caregiving did not interact with ATOA. However, transitioning into intense caregiving significantly moderated the association between ATOA and depressive symptoms. Lower depressive symptoms were associated with better ATOA and this association was significantly stronger in the intense caregiving condition than in the non-caregiving condition. No significant interaction effects were found between any form of caregiving and subjective age. LIMITATIONS: The possibility of reciprocal effects cannot be excluded. CONCLUSION: Internalized ageism and depressive symptoms are more strongly related among caregivers who provide intense care. Thus, interventions to reduce internalized ageism could be helpful in particular among this vulnerable group of informal caregivers.

Association of the @ctivehip tele-rehabilitation with the fear of falling of older adults with hip fracture and their family caregivers: Secondary analysis of a non-randomised controlled trial.

INTRODUCTION: Osteoporotic hip fracture is a major health problem. Falls, the primary cause, might lead to a persistent fear of falling (FoF) among older adults, affecting their daily activities and rehabilitation. While in-person interventions exist, limited research is available on the effects of tele-rehabilitation on the FoF after a hip fracture. Thus, this study aims to test the association of the @ctivehip tele-rehabilitation programme on reducing the levels of FoF experienced by both older adults with hip fracture and their family caregivers. METHODS: A non-randomised controlled trial (ClinicalTrials.gov; Identifier: NCT02968589) that compared a webpage-based tele-rehabilitation (@ctivehip) against usual care. Fear of falling was assessed using the Short Falls Efficacy Scale-International. Patients' functional status was evaluated using the Functional Independence Measure. Physical performance was assessed by the Timed Up and Go test and Short Physical Performance Battery. We conducted a per-protocol analysis as the primary outcome, and an intention-to-treat approach as secondary analysis. RESULTS: A total of 71 patients with hip fracture (78.75 ± 6.12 years, 75% women) and their family caregivers participated. Participants in the intervention showed a higher decrease in FoF in comparison to those in the usual care (0.5 Cohen's d; p = 0.042). The reduction in FoF resulting from participation in the tele-rehabilitation programme was mediated by improvements in functional status by 79%. The @ctivehip programme did not decrease FoF of family caregivers. DISCUSSION: @ctivehip is associated with a reduction of the FoF in older adults with hip fractures, but not in their family caregivers, with the reduction being mostly explained by improvements in the patients' functional status. Although the intervention seems promising, it should not be applied in clinical settings until confirmed by appropriate-designed randomised clinical trials.

Who do patients depend on as they age and for what medical needs? An exploratory study of Chinese and Latino primary care patients.

BACKGROUND: As the U.S. population ages, family members increasingly act as informal caregivers, particularly for minority patients and those with limited English proficiency (LEP). However, physicians often do not identify or engage caregivers until there is a health crisis. This study aims to further our understanding of characteristics associated with having a caregiver present at a primary care visit, and better understand the specific roles family caregivers engage in to support older Chinese and Latino primary care patients. METHODS: Primary care patients were surveyed by telephone in a study of language access and communication. Participants included Chinese and Latino primary care patients (≥ 65 years old) from an academic general medicine practice. We asked patients if anyone was in the room with them during their most recent primary care visit (yes = caregiver accompanied). We asked about caregiving support for various needs, and examined associations of patient and visit characteristics with being accompanied, and frequency of caregiver support roles overall and by caregiver accompaniment. RESULTS: Among 906 participants, 80% preferred a non-English language, 64% were women, 88% had Medicare, and mean age was 76 years (range 65-97). 43% were accompanied to their most recent visit. Speaking English 'not at all' vs. 'very well' was associated with being caregiver accompanied (OR 3.5; 95% CI 1.3-9.7), as was older age ≥ 75 vs. 65-74 (OR 2.7; 95% CI 2.0-3.7). The most common roles being supported by caregivers included: transportation to medical appointments (63%), helping with medical decisions (60%), and talking with the doctor about the patient's medical care (54%). Even among unaccompanied patients, substantial proportions reported caregiver support with medical decisions (45%), talking with the doctor (33%), and medical needs at home (26%). CONCLUSIONS: Opportunities for physicians to engage caregivers who have active support roles may be missed, especially if those caregivers are not present at the visit. Future interventions should aim to help physicians identify which patients have caregivers and for what needs, so they may effectively engage caregivers before a health crisis occurs.

The Lived Experience of Informal Caregivers of People Who Have Severe Mental Illness and Coexisting Long-Term Conditions: A Qualitative Study.

BACKGROUND: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long-term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. METHODS: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. RESULTS: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high-risk situations, leading to hypervigilance and paternalistic approaches to care. CONCLUSION: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden. PATIENT OR PUBLIC CONTRIBUTION: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write-up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors.

The role of gender in health insurance enrollment among geriatric caregivers: results from the 2022 informal caregiving, health, and healthcare survey in Ghana.

BACKGROUND: Female informal caregivers of older adults experience a higher burden of physical and mental health problems compared to their male counterparts due to the greater intensity of care they provide. This is likely to result in an imbalance in health needs, including health insurance enrollment, between male and female informal caregivers of older adults. However, to date, no study is available on the role of gender in health insurance enrollment among informal caregivers of older adults in Ghana. This study examines the association between gender and health insurance enrollment among informal caregivers of older adults in Ghana. METHODS: Cross-sectional data from the Informal Caregiving, Health, and Healthcare Survey among caregivers of older adults aged 50 years or above (N = 1,853 and mean ages = 39.15 years and 75.08 years of informal caregivers and their care recipients, respectively) in Ghana were analyzed. A binary logit regression model was used to estimate the association between gender and health insurance enrollment. All statistical inferences were made at the 5% significance level. RESULTS: The final Model (3) showed that female informal caregivers were 2.70 times significantly more likely to enrol in a health insurance scheme than their male counterparts (AOR: 2.70, 95% CI: 2.09-3.48, p-value = 0.001). Apart from gender, the results revealed that participants aged 55-64 years (AOR = 2.38, 95%CI: 1.29-4.41, p-value = 0.006), with tertiary education (AOR: 3.62, 95% CI: 2.32-5.66, p-value = 0.001) and living with the care recipients (AOR: 1.50, 95% CI: 1.14-1.98, p-value = 0.003) were significantly more likely to enrol in a health insurance scheme than their counterparts. The findings further showed that those who earned between GH¢1000 and 1999 (US$99.50-198.50) monthly (AOR: 0.70, 95% CI: 0.52-0.95, p-value = 0.022) and were affiliated with African traditional religion (AOR: 0.30, 95%CI: 0.09-0.99, p-value = 0.048) were significantly less likely to enrol in a health insurance scheme than their counterparts. CONCLUSION: Gender was a significant predictor of health insurance enrollment among informal caregivers of older adults. This finding contributes to the empirical debates on the role of gender in health insurance enrollment among informal caregivers of older adults. Policymakers need to develop gender-specific measures to address gender gaps in health insurance enrollment among informal caregivers of older adults in Ghana. Such health policies and programs should consider other significant demographic and socioeconomic factors associated with health insurance enrolment among informal caregivers of older adults in Ghana.

Adapting a dyadic exercise program to be culturally relevant for Hispanic men with prostate cancer using community engagement studio: a brief report.

Background: Cancer disparities exist for Hispanic men with prostate cancer and their caregivers that could be reduced through exercise. Exercising Together© is a six-month, evidence-based dyadic resistance training program that promotes teamwork between prostate cancer survivors and their spouses to improve physical, mental, and relational health outcomes. The purpose of this study was to elicit feedback and recommendations from stakeholders on the Exercising Together© intervention to inform the cultural adaptation of this program for Hispanic men with prostate cancer. Methods: We conducted a virtual Community Engagement Studio (V-CES) with community expert stakeholders representing the Hispanic and cancer care communities in Southern Arizona. The V-CES process included orientation, presentation of the research, guided discussion, and evaluation. The V-CES was audio recorded, transcribed, and rapidly analyzed to identify actionable feedback and contextual adaptations. Results: Nine stakeholders (6/9 male; 5/9 Hispanic) completed all V-CES activities. Through stakeholder engagement and feedback from the V-CES, adaptations to the original Exercising Together© intervention included: (1) inclusion of the cancer survivor's identified caregiver, who may not be a spouse; (2) availability in English and Spanish; (3) shortening the intervention to 3 months; (4) remote delivery of the intervention; and (5) incorporation of low burden procedures. Conclusion: Findings from our V-CES informed the adaptation of a culturally relevant dyadic progressive resistance training program for Hispanic men with prostate cancer and their caregivers.

Literature Review: Support for caregivers of children on the ketogenic diet for epilepsy and other neurologic disorders.

Epilepsy affects millions of people and when medications are insufficient to maintain seizure control, individuals are diagnosed with refractory epilepsy (RE). Medical ketogenic diet therapy (KDT), a diet high in fat and low in carbohydrates and sufficient in protein, is a well-established treatment for RE. However, compliance is one of the main reasons for discontinuation of KDT and, with pediatric RE patients, the ability of informal caregivers, typically family members, to maintain diet adherence is vital for successful KDT treatment. The central role that informal caregivers play for effective KDT implementation is recognized, however, there is a need to elucidate the rationale and theoretical underpinnings of effective KDT caregiver support programs to inform best practices. Therefore, this systematic literature review aims to identify the existing fundamental understandings of KDT caregiver support to help build a foundation of theory-based knowledge to promote evidenced practice. After screening 137 publications, three studies that discussed potential underlying components of effective caregiver support were included in this review. These articles followed a similar approach as they 1) employed qualitative methods delving into caregiver needs, 2) findings highlighted the importance of support from family, friends, fellow caregivers and their child's medical team, and 3) the inclusion of caregiver support findings were a supplement to the main purpose of the manuscript. Research focused on KDT caregivers is in its infancy. There is a clear need for the systematic examination of support for KDT caregivers to build a foundation for effective support programs and to increase the access to quality support programming to foster KDT implementation, desirable patient outcomes, and caregiver well being. In this article we discuss opportunities to apply self-determination theory to the KDT caregiver support research and practice.

Mobile Health Apps, Family Caregivers, and Care Planning: Scoping Review.

BACKGROUND: People living with multiple chronic conditions (MCCs) face substantial challenges in planning and coordinating increasingly complex care. Family caregivers provide important assistance for people with MCCs but lack sufficient support. Caregiver apps have the potential to help by enhancing care coordination and planning among the health care team, including patients, caregivers, and clinicians. OBJECTIVE: We aim to conduct a scoping review to assess the evidence on the development and use of caregiver apps that support care planning and coordination, as well as to identify key factors (ie, needs, barriers, and facilitators) related to their use and desired caregiver app functionalities. METHODS: Papers intersecting 2 major domains, mobile health (mHealth) apps and caregivers, that were in English and published from 2015 to 2021 were included in the initial search from 6 databases and gray literature and ancestry searches. As per JBI (Joanna Briggs Institute) Scoping Review guidelines and PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews), 2 authors independently screened full texts with disagreements resolved by a third author. Working in pairs, the authors extracted data using a pilot-tested JBI extraction table and compared results for consensus. RESULTS: We identified 34 papers representing 25 individual studies, including 18 (53%) pilot and feasibility studies, 13 (38%) qualitative studies, and 2 experimental or quasi-experimental studies. None of the identified studies assessed an intervention of a caregiver app for care planning and coordination for people with MCCs. We identified important caregiver needs in terms of information, support, and care coordination related to both caregiving and self-care. We compiled desired functionalities and features enabling apps to meet the care planning and care coordination needs of caregivers, in particular, the integration of caregiver roles into the electronic health record. CONCLUSIONS: Caregiver needs identified through this study can inform developers and researchers in the design and implementation of mHealth apps that integrate with the electronic health record to link caregivers, patients, and clinicians to support coordinated care for people with MCCs. In addition, this study highlights the need for more rigorous research on the use of mHealth apps to support caregivers in care planning and coordination.

Youth Caregivers of Adults in the United States: Prevalence and the Association Between Caregiving and Education.

A growing proportion of individuals adopt family caregiving roles. Family caregivers are the primary providers of long-term care in the United States yet limited federal policy supports exist, despite the known negative impacts of caregiving. There is also limited information about the prevalence of youth/young adult caregivers and the impacts of caregiving at formative ages in the United States. Our objective is to estimate the prevalence of youth caregivers and examine the association of caregiving with educational investments. We use the American Time Use Survey (2013-2019) to identify and describe youth caregivers (aged 15-18) and young adult caregivers (aged 19-22) and compare them with non-caregiving peers. We estimate that there are approximately 1,623,000 youth caregivers and 1,986,000 young adult caregivers, corresponding to 9.2% and 12.7% of these age groups, respectively. However, there is a wide range in the estimated prevalence per year, from approximately 364,000 to 2.8 million youth caregivers and from 353,000 to 2.2 million young adult caregivers, depending on caregiver definition. Unlike adult caregivers, we find that young men and women were nearly equally likely to provide care. We also find that non-White individuals are disproportionately represented as youth caregivers. Compared with non-caregiving peers, both youth and young adult caregivers are less likely to be enrolled in school and, among those enrolled in school, spend significantly less time on educational activities. Considering the association of caregiving among youth/young adults and education, policies supporting youth and young adult caregivers are critical.

Technology-based interventions on burden of older adults' informal caregivers: a systematic review and meta-analysis of randomized controlled trials.

BACKGROUND: An increasing number of technologies are provided to reduce the burden of older adults' informal caregivers. However, less is known about the effects and the mechanism of technology to work on burden. This review is to evaluate the effectiveness of technology-based interventions (TBI) in alleviating the burden of older adults' informal caregivers and to distinguish its effective mechanism via group disparities. METHODS: A systematic review and meta-analysis of randomized controlled trials studies (RCTs) has been conducted. Web of Science, PubMed, EMBASE, Scopus, CINAHL, PsycINFO, WANFANG, CNKI, CQVIP databases, Cochrane Library Trials, and ClinicalTrials.gov were searched for trial studies and registry in both English and Chinese published from January 1990 to October 2022. Reviewers independently screened the articles and trials, conducted quality assessments, and extracted the data. All processes were guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Risk of bias of the studies was evaluated by the Cochrane Systematic Review Handbook. The meta-analysis was conducted by RevMan 5.13. Subgroup analyses, sensitivity analyses, publication bias were also conducted. RESULTS: A total of 11,095 RCTs were initially screened, and 14 trials representing 1010 informal caregivers were included finally. This review proved TBI effective in reducing caregiving burden older adults. Subgroup analysis showed effects of TBI differed by interventions on control group and medical conditions of care recipients. CONCLUSION: TBI is an effective way to alleviate the burden on informal caregivers of aging people. Interventions for control groups and medical conditions of care-recipients are significant factors in effective interventions. Future researches could include more trials with high-quality or to explore more targeted aging groups, modalities of TBI, or caregiver outcomes. TRIAL REGISTRATION: The review protocol was registered on PROSPERO [CRD42021277865].

Impact of Residential Segregation on Healthcare Utilization and Perceived Quality of Care Among Informal Caregivers in the United States.

This study aimed to investigate the impact of racial residential segregation on healthcare utilization and perceived quality of care among informal caregivers in the US. It further assessed potential variations in the estimated impact across caregivers' race and socioeconomic status. We used data from the Health Information National Trends Survey Data Linkage Project (fielded in 2020) for a sample of 583 self-identified informal caregivers in the US. Fitting a series of regression models with the maximum likelihood estimation, we computed the beta coefficients (ß) of interest and their associated Wald 95% confidence limits (CI). Caregivers who resided in areas with higher segregation, compared to those living in lower segregated areas, were less likely to visit a healthcare professional [ß = - 2.08; Wald 95%CI - 2.093, - 2.067] (moderate); [ß = - 2.53; Wald 95%CI - 2.549, - 2.523] (high)]. Further, caregivers residing in moderate [ß = - 0.766; Wald 95%CI - 0.770, - 0.761] and high [ß = - 0.936; Wald 95%CI - 0.941, - 0.932] segregation regions were less likely to perceive a better quality of care compared to those located in low segregation areas. Moreover, as segregation level increased, Black caregivers were less likely to see a health professional, less frequently used healthcare services, and had poorer perceived healthcare quality when compared to Whites. Our findings indicate that higher residential segregation is associated with lower healthcare utilization, such as visiting a healthcare professional, and poorer perceived healthcare quality among informal caregivers. Given the essential role of informal caregivers in the current healthcare system, it is vital to investigate and address challenges associated with access to and quality of essential healthcare services to improve caregivers' health and well-being, specifically for caregivers of minority backgrounds.