The effect of internet-administered support (carer eSupport) on preparedness for caregiving in informal caregivers of patients with head and neck cancer compared with support as usual: a study protocol for a randomized controlled trial.

BACKGROUND: Informal caregivers (ICs) of patients with cancer provide essential and mainly uncompensated care. A self-perceived preparedness to care for the patient is associated with a lower caregiver burden, described as the extent to which caregiving is perceived as having adverse effects on IC functioning and well-being. ICs' well-being is associated with patient-perceived quality of care, suggesting that interventions to optimize ICs' health are essential in order to improve patient care. Head and neck cancer (HNC) is the seventh most common malignant disease in the world. The disease and its treatment have a significant negative impact on the patient's health and quality of life. Symptoms usually interfere with swallowing, food and fluid intake, breathing, speaking, and communication. ICs frequently manage patients' symptoms and side effects, especially problems related to nutrition and oral pain, without being properly prepared. Carer eSupport is an Internet-administered intervention, based on focus group discussions with ICs, developed in collaboration with ICs and healthcare professionals, tested for feasibility, and deemed feasible. This study protocol outlines the methods of investigating the effects of Carer eSupport plus support as usual (SAU) on self-reported preparedness for caregiving, caregiver burden, and well-being in the ICs of patients with HNC, compared with ICs receiving SAU only. METHODS AND ANALYSIS: In this randomized controlled trial, 110 ICs of patients with HNC, undergoing radiotherapy combined with surgery and/or medical oncological treatment, will be randomized (1:1) to Carer eSupport plus SAU or SAU only. Data will be collected at baseline (before randomization), post-intervention (after 18 weeks), and 3 months after post-intervention. The primary outcome is self-reported preparedness for caregiving. Secondary outcomes are self-reported caregiver burden, anxiety, depression, and health-related quality of life. The effect of Carer eSupport plus SAU on preparedness for caregiving and secondary outcomes, compared with SAU only, will be evaluated by intention to treat analyses using linear regression models, mixed-model regression, or analysis of covariance. DISCUSSION: If proven effective, Carer eSupport has the potential to significantly improve ICs' preparedness for caregiving and their wellbeing, thereby improving patient-perceived quality of care and patient wellbeing. TRIAL REGISTRATION: ClinicalTrials.gov; NCT06307418, registered 12.03.2024 (https://clinicaltrials.gov/search? term=NCT06307418).

National Estimates of Incremental Work Absenteeism Costs Associated With Adult Children of Parents With Alzheimer's Disease and Related Dementias.

OBJECTIVE: More than half of primary caregivers for ADRD patients are adult children, yet there is little empirical evidence on how caring for parents with ADRD affects their employment. Using a nationally representative dataset, this study aimed to estimate incremental work absenteeism costs for adult children of parents with ADRD. DESIGN, SETTING, AND PARTICIPANTS: The study used the data from the 2015-2021 Medical Expenditure Panel Survey (MEPS). Multivariate regressions and two-part models were employed to estimate the incremental work absenteeism costs among adult children aged 40 to 64 who had at least one parent diagnosed with ADRD, compared with those who did not have ADRD parents. MEASUREMENTS: The incremental work absenteeism costs due to caregiving for adult children with ADRD parents was a cumulated estimation of labor productivity cost at three stages: (1) the likelihood of not working due to unemployment, (2) the likelihood of missing any workdays for caregiving, and (3) the number of workdays missed due to caregiving. RESULTS: Adult children with ADRD parents were more likely to be unemployed (OR = 1.80, p = 0.024) and 2.95 times more likely to miss work for caregiving (p = 0.002) than those with non-ADRD parents. The difference in the number of workdays missed for caregiving between children with and without ADRD parents was not significant. The incremental effects of having ADRD parents were estimated to be $4,510.29 ($1,702.09-$6,723.69) per person per year. CONCLUSIONS: Having ADRD parents significantly increases the chances of unemployment and missing any workdays for caregiving, leading to higher lost labor productivity costs for adult children with ADRD parents.

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.

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.

Association between stigma and quality of life among chronic refractory wounds patients and informal caregivers: an actor-partner interdependence model analysis.

PURPOSE: The co-occurrence of health impairments in patients and their informal caregivers may be particularly common in intimate care settings in China. Patients with Chronic Refractory Wounds (CRWs) and their informal caregivers constitute a dyad and exhibit dyadic effects during the caring process. Unfortunately, no study has yet explored the dyadic effects of stigma on the QoL of patients with CRWs and their caregivers. METHODS: We used a convenience sampling method and recruited CRWs patient-caregiver dyads (N = 207) in China between April 2022 and October 2023. RESULTS: We found that: (i) dyadic members experience varying degrees of stigma; (ii) the actor-partner effect of CRWs patients' stigma on their own and their informal caregivers' QoL was significant (Path A1: ß = - 1.27, Path A2: ß = - 0.37, Path P1: ß = - 0.08, Path P2: ß = - 0.18); (iii) informal caregivers' stigma adversely affects both their own and their patients' psychological QoL((Path A4: ß = - 0.65, Path P4: ß = - 0.52)). Informal caregivers' stigma can negatively impact patients' physical QoL (Path P3: ß = - 0.17), whereas it does not significantly affect their own physical QoL. CONCLUSION: There is a notable actor-partner effect of the CRWs patients' stigma on their own and their informal caregivers' QoL. CRWs patients' stigma should become a priority for the government to improve CRWs patients' and informal caregivers' QoL. Besides, health professionals should be addressing several assessments and interventions to decrease informal caregivers' affiliate stigma symptoms and improve CRWs patients' and informal caregivers' QoL.

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.

"It's a stressful, trying time for the caretaker": an interpretive description qualitative study of postoperative transitions in care for older adults with frailty from the perspectives of informal caregivers.

BACKGROUND: Older adults with frailty have surgery at a high rate. Informal caregivers often support the postoperative transition in care. Despite the growing need for family and caregiver support for this population, little is known about the experience of providing informal care to older adults with frailty during the postoperative transition in care. The purpose of this study was to explore what is important during a postoperative transition in care for older adults with frailty from the perspective of informal caregivers. METHODS: This was a qualitative study using an interpretive description methodology. Seven informal caregivers to older adults [aged ≥ 65 years with frailty (Clinical Frailty Scale score ≥ 4) who had an inpatient elective surgery] participated in a telephone-based, semi-structured interview. Audio files were transcribed and analyzed using reflexive thematic analysis. RESULTS: Four themes were constructed: (1) being informed about what to expect after surgery; (2) accessible communication with care providers; (3) homecare resources are needed for the patient; and (4) a support network for the caregivers. Theme 4 included two sub-themes: (a) respite and emotional support and (b) occupational support. CONCLUSIONS: Transitions in care present challenges for informal caregivers of older adults with frailty, who play an important role in successful transitions. Future postoperative transitional care programs should consider making targeted information, accessible communication, and support networks available for caregivers as part of facilitating successful transitions in care.

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.

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.

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.

Promoting meaningful activities by occupational therapy in elderly care in Belgium: the ProMOTE intervention.

BACKGROUND: Older people want to age in place. Despite advancing functional limitations and their desire of aging in place, they are not always faithful to therapy that maintains independence and promotes safety. Occupational therapists can facilitate aging in place. Occupational therapy is defined as the therapeutic use of everyday life occupations with persons, groups, or populations for the purpose of enhancing or enabling participation. AIM: To describe the content a high-adherence-to-therapy and evidence-based occupational therapy intervention to optimize functional performance and social participation of home-based physically frail older adults and wellbeing of their informal caregiver, and the research activities undertaken to design this intervention. METHODS: A roadmap was created to develop the occupational therapy intervention. This roadmap is based on the Medical Research Council (MRC) framework and is supplemented with elements of the Intervention Mapping approach. The TIDieR checklist is applied to describe the intervention in detail. A systematic review and two qualitative studies substantiated the content of the intervention scientifically. RESULTS: The application of the first two phases of the MRC framework resulted in the ProMOTE intervention (Promoting Meaningful activities by Occupational Therapy in Elderly). The ProMOTE intervention is a high-adherence-to-therapy occupational therapy intervention that consists of six steps and describes in detail the evidence-based components that are required to obtain an operational intervention for occupational therapy practice. CONCLUSION: This study transparently reflects on the process of a high-quality occupational therapy intervention to optimize the functional performance and social participation of the home-based physically frail older adult and describes the ProMOTE intervention in detail. The ProMOTE intervention contributes to safely aging in place and to maintaining social participation. The designed intervention goes beyond a description of the 'what'. The added value lies in the interweaving of the 'why' and 'how'. By describing the 'how', our study makes the concept of 'therapeutic use-of-self' operational throughout the six steps of the occupational therapy intervention. A further rigorous study of the effect of the ProMOTE intervention on adherence, functional performance and social participation is recommended based to facilitate the implementation of this intervention on a national level in Belgium.

Randomized controlled trials on promoting self-care behaviors among informal caregivers of older patients: a systematic review and meta-analysis.

BACKGROUND: Informal caregivers of older patients often neglect their self-care, despite the mental and physical health effects of caregiving. Randomized controlled trials (RCTs) on self-care interventions for informal caregivers are lacking, making it difficult to determine effective strategies. This systematic review explored the definition and categories of self-care RCTs for informal caregivers and a meta-analysis was conducted to determine the effectiveness of these interventions. METHODS: Seven databases (Scopus, Web of Science, MEDLINE, PubMed, ProQuest, CINAHL, and Embase) were searched for articles in English reporting on self-care intervention outcomes for informal caregivers of patients aged 60 years or older. Standardized mean differences (SMD) with 95% confidence intervals (CI) were calculated using a random-effects model. Subgroup, sensitivity, and publication bias analyses were conducted. RESULTS: Eighteen studies were included in the systematic review, of which fifteen studies were included in the meta-analysis. RCTs lacked a clear definition of self-care, mainly focused on promoting physical and mental health and individual capacity, and neglected disease prevention. The interventions focused on self-management for health and individual agency, with less attention on health literacy, decision-making capacity, self-monitoring for health status, and linkage to the health system. Meta-analysis results showed that RCTs had a small effect on reducing anxiety (SMD = -0.142, 95% CI [-0.302, 0.017], p = .081) but a significant effect on reducing depression (SMD = -0.214, 95% CI [-0.353, -0.076], p = .002). Country and type of caregiver significantly contributed to the effect of reducing caregivers' depression in subgroup analysis. CONCLUSIONS: Studies on caregiver-centered self-care interventions are limited, resulting in a lack of a clear definition and comprehensive intervention. RCTs indicated a small effect on informal caregivers' mental health, and interventions should consider both mental and physical health. More evidence is needed on the effectiveness of self-care interventions for informal caregivers' anxiety and physical health.

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].

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.

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.

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.

"Being an informal caregiver - strengthening resources": mixed methods evaluation of a psychoeducational intervention supporting informal caregivers in palliative care.

BACKGROUND: Informal caregivers are key support for patients with progressive incurable diseases. However, their own needs often remain unmet. Therefore, we developed, manualised and implemented the intervention "Being an informal caregiver - strengthening resources" aiming to support and empower informal caregivers by addressing relevant information-related, physical, psychological and social needs. METHODS: In this pilot study, we evaluated the acceptance and experiences with this psychoeducational intervention. The study was conducted over two years (2019-2021). Informal caregivers were recruited from the University Medical Centre Hamburg-Eppendorf and the metropolitan region of Hamburg, Germany. The intervention was aimed at adult persons who identified themselves as an informal caregiver to an adult patient with a progressive incurable cancer and non-cancer disease. For the evaluation we used a mixed methods approach, combining a longitudinal questionnaire survey (pre-intervention, after each module, 3-months follow-up) and semi-structured interviews post-intervention. Quantitative data were analysed using descriptive statistics and a paired t-Test, interviews were analysed based on the qualitative content analysis according to Mayring. Results were triangulated using a convergent triangulation design. RESULTS: Of 31 informal caregivers who received the intervention, 25 returned the follow-up questionnaire and 20 informal caregivers were interviewed. Triangulated results showed a high satisfaction with the implementation of the intervention. Of a broad range of subjective benefits, gaining knowledge, self-awareness and self-efficacy were most apparent. Informal caregivers reported improved preparedness, awareness of own needs as well as confidence regarding handling own emotions and interacting with the ill person. However, implementing the learned skills into daily life can be challenging due to internal and external factors. Motivations and challenges for participating as well as potential for improvement were identified. CONCLUSIONS: This pilot study showed an overall positive evaluation and several subjective benefits of the psychoeducational intervention "Being an informal caregiver - strengthening resources". Further research is needed to measure the efficacy of this intervention on informal caregivers' outcomes. Therefore, a multicentre randomized prospective study is planned.

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.

Strategies for engaging older adults and informal caregivers in health policy development: A scoping review.

BACKGROUND: Care for older adults is high on the global policy agenda. Active involvement of older adults and their informal caregivers in policy-making can lead to cost-effective health and long-term care interventions. Yet, approaches for their involvement in health policy development have yet to be extensively explored. This review maps the literature on strategies for older adults (65+ years) and informal caregivers' involvement in health policy development. METHOD: As part of the European Union TRANS-SENIOR program, a scoping review was conducted using the Joanna Briggs Institute's methodology. Published and grey literature was searched, and eligible studies were screened. Data were extracted from included studies and analysed using the Multidimensional Framework for Patient and Family Engagement in Health and Healthcare. RESULTS: A total of 13 engagement strategies were identified from 11 publications meeting the inclusion criteria. They were categorized as "traditional", "deliberative" and "others", adopting the World Bank's categorization of engagement methods. Older adults and informal caregivers are often consulted to elicit opinions and identify priorities. However, their involvement in policy formulation, implementation and evaluation is unclear from the available literature. Findings indicate that older adults and their informal caregivers do not often have equal influence and shared leadership in policy-making. CONCLUSION: Although approaches for involving older adults and their informal caregivers' involvement were synthesized from literature, we found next to no information about their involvement in policy formulation, implementation and evaluation. Findings will guide future research in addressing identified gaps and guide policy-makers in identifying and incorporating engagement strategies to support evidence-informed policy-making processes that can improve health outcomes for older adults/informal caregivers.