Support Family Caregivers Research Articles

Roles and usages of neuro service dogs for caregivers living at home with persons with dementia: An exploratory comparative case study.

The goal of the present study was to examine how canine assistance may support family caregivers and persons with dementia and to document and compare two modalities of home care support. An exploratory comparative case study research design was conducted. Three cases correspond of dyads of a caregiver, a person with mild to moderate dementia, and either a neuro service dog (NSD), a companion dog or no dog. Hypotheses are formulated to capture differences between cases. Recruitment was done in a service dog organisation, through Canadian Alzheimer associations and in records of a hospital. Data were collected through 45-60minutes telephone interviews that included completion of the Caregiver's Burden Scale and sociodemographic questions. We used an inductive approach with qualitative data. There were five caregivers (mean age 54.8years) who had an NSD, 28 caregivers (63.6years) who had a companion dog, and 23 caregivers (63.8years) without dog. In the category of roles and usages of the dog, 'Socialisation' and 'Help with a sense of direction' were the most addressed roles for dyads with the NSD. For dyads with companion dog and without dog, 'Engagement-and-meaning of life' as well as 'Physical activity with the dog' were the most discussed roles. The 'Sleep or wake up' role was the least discussed role across three cases. In the other categories, they were seven advantages and 10 inconvenients that were mentioned for canine assistance. For home care support, the presence of NSD has more positive impacts on both the person with dementia and their caregiver compared to the presence of a companion dog; the presence of a NSD results in the person with dementia accessing more indoor and outdoor public sites than with a companion dog; and dyads with a dog are informally socially engaged more frequently than those with no dog.

Exploring the Support and Involvement of Family Caregivers for Reablement Programs: A Qualitative Study.

Reablement is a person-centered, holistic approach promoting older adults' participation through social, leisure, and physical activities. Family caregivers are seldom involved in reablement services despite their wish to be an active member of the care team and expressing a need for more support and recognition. The voice of family caregivers is often forgotten when evaluating services such as reablement. Little is known how family caregivers can be involved and supported more effectively in reablement services, therefore the aim of our research is to investigate the perceived support and involvement of family caregivers. As part of the TRANS-SENIOR project, we studied perceived support and involvement of family caregivers during and after geriatric rehabilitation, a setting in which principles of reablement, like goal setting and training of daily activities, are applied. In total, fourteen semi-structured interviews were conducted with family caregivers of people admitted to a geriatric rehabilitation facility. Thematic analysis was used. Results reflected four themes: (1) support for family caregivers, (2) involvement in care, (3) trusting care professionals, and (4) asking for and accepting support. Family caregivers' experiences with support from care professionals were mainly ambivalent. While caregivers expressing a lack of support and information whilst also indicating that they do not expect to be supported by care professionals. Regarding involvement, caregivers wanted to be involved; ie express their opinion and be involved in decision-making. However, more involvement could also lead to a higher burden. There is a discrepancy between the perceived support and involvement of family caregivers, their expressed needs, and their expectations of care professionals. A personalized approach is needed to create room for the family caregiver to be an active participant in the care process while also providing the right amount of support, when preferred by the caregiver.

Perceived Stressors and Support in Family Caregivers of Individuals With Opioid Use Disorder.

Stress experienced by family caregivers of individuals with opioid use disorder (OUD) contributes to caregiver burden. To understand the stressors experienced by family caregivers of individuals with OUD and the factors that influence their personal resiliency, data were collected from a convenience sample of family caregivers who answered two open-ended questions about sources of stress and factors that affect their personal resilience as part of an online survey. Yin's thematic analysis revealed five objective and two subjective burden themes and four resilience themes. Results indicate OUD places significant burden on families and may contribute to decreased physical and mental well-being in caregivers. Caregivers who perceived adequate support were able to use their experience and innate knowledge to cope and emerge with more resilience. Results of this study support the need for translational research to increase resilience and coping in this population of caregivers.

Developing a national implementation strategy to accelerate uptake of evidence-based family caregiver support in U.S. cancer centers.

Characterize key factors and training needs of U.S. cancer centers in implementing family caregiver support services. Sequential explanatory mixed methods design consisting of: (1) a national survey of clinicians and administrators from Commission-on-Cancer-accredited cancer centers (N=238) on factors and training needed for establishing new caregiver programs and (2) qualitative interviews with a subsample of survey respondents (N=30) to elicit feedback on survey findings and the outline of an implementation strategy to facilitate implementation of evidence-based family caregiver support (the Caregiver Support Accelerator). Survey data was tabulated using descriptive statistics and transcribed interviews were analyzed using thematic analysis. Top factors for developing new caregiver programs were that the program be: consistent with the cancer center's mission and strategic plan (87%), supported by clinic leadership (86.5%) and providers and staff (85.7%), and low cost or cost effective (84.9%). Top training needs were how to: train staff to implement programs (72.3%), obtain program materials (63.0%), and evaluate program outcomes (62.6%). Only 3.8% reported that no training was needed. Qualitative interviews yielded four main themes: (1) gaining leadership, clinician, and staff buy-in and support is essential; (2) cost and clinician burden are major factors to program implementation; (3) training should help with adapting and marketing programs to local context and culture; and (4) the Accelerator strategy is comprehensive and would benefit from key organizational partnerships and policy standards. Findings will be used to inform and refine the Accelerator implementation strategy to facilitate the adoption and growth of evidence-based cancer caregiver support in U.S. cancer centers.

Family Caregiver Support Interventions’ Effectiveness Before and During the COVID-19 Pandemic

ABSTRACT The authors aimed to assess the impact of a family caregiver support intervention on caregiver burden and hospital readmission before and during the COVID-19 pandemic. By adopting a quasi-experimental design with no randomization, caregivers (n = 65) received a 90-day home visitation caregiver support intervention before the COVID-19 pandemic and caregivers (n = 41) received a 90-day phone-only visitation caregiver support intervention during the COVID-19 pandemic. Caregiver burden was collected in a survey, and hospital readmission of the care recipient was collected by hospital data. The results of a repeated-measures ANOVA demonstrated that participants of a family caregiver support intervention during the COVID-19 pandemic improved their caregiver burden statistically significantly more than those who received the intervention before the pandemic. There were no significant differences in hospital readmissions before or during the COVID-19 pandemic. The study demonstrates the efficacy of family caregiver support interventions over the phone during a pandemic.

Family caregivers’ experiences of discussing their needs with a nurse during specialised home care utilizing the carer support needs assessment tool intervention - A qualitative study

PurposeThe Carer Support Needs Assessment Tool Intervention (CSNAT-I) was designed to help family caregivers identify, reflect upon, and express their support needs in a conversation with a health care professional and gain tailored support. The CSNAT-I has shown positive effects for both nurses and family caregivers but for more comprehensive understanding this study aims to examine family caregivers' experiences of discussing their needs with a nurse during specialised home care, utilizing the CSNAT-I. MethodsThe study used an inductive qualitative descriptive design based on framework analysis. Data was collected using individual semi-structured telephone interviews with 10 family caregivers, with a median age of 66, from four specialised home care services. ResultsFamily caregivers appreciated having scheduled meetings with nurses utilizing the CSNAT-I which gave them an opportunity to focus on what was important to them. Family caregivers experienced that the conversations were co-created with a flexible dialogue. The conversations provided new perspectives and insights which helped in finding possible solutions. Family caregivers felt empowered by the co-created conversation and took on a more active role in involving the rest of their family to find support to themselves and the patients. ConclusionThe CSNAT-I can facilitate communication between family caregivers and nurses leading to adequate supportive inputs. The intervention gives family caregivers an increased opportunity to be involved in their own support, which may enhance their sense of security. According to family caregivers’ experiences, CSNAT-I may be an adequate way to support family caregivers to reflect and discuss their needs.

A theory of cultural translation in healthcare for multilingual older adults living with dementia and their caregivers

Objective: The United States is a multicultural, multilingual country; as a recognized feature of the American population, the challenges of caregivers seeking services for multilingual older adults still need to be better understood. This study aims to understand the experience of caregivers who sought healthcare services for a multilingual older adult living with dementia.Methods: Using Constructivist Grounded Theory, formal and informal caregivers participated in semi-structured interviews to ascertain their experiences seeking health services for multilingual older adults with dementia.Results: Several themes emerged, including Cultural Translator, Mitigating Relationships, Leaning, Seeking Help, Meeting them where they are, and a Rigid Healthcare System. Lastly, the participants’ descriptions unveiled a phenomenon identified as cultural translator stress. Cultural Translator stress may occur due to the added responsibilities of advocacy, healthcare system navigation, language interpretation, and explanations of culturally based idioms on behalf of the multilingual older adult with dementia for the healthcare provider.Conclusions: As our understanding of care for multilingual older adults with dementia improves, awareness of their caregiver's needs and mechanisms to support this unique population should emerge. Factors such as culture, access to culturally appropriate services, and services needed to support family caregivers are needed. Further studies are needed to understand the stressors related to caring for a multilingual adult living with dementia or the phenomenon of cultural translator stress.

Supporting Diverse Family Caregivers: Key Stakeholder Perspectives.

This study aimed to understand the perspectives of key stakeholders regarding strategies for better supporting culturally and ethnically diverse family caregivers, aiming to incorporate them into the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Advisory Council's proposed National Strategy. The Strategy, published in 2022, identified priority actions to support the growing population of people providing unpaid care to people of all ages with disabilities, with a goal of improving the health and well-being of both the family caregiver and the person receiving support. Researchers conducted extensive outreach to purposively diverse stakeholder organizations, using six stakeholder strategy sessions with representatives from 42 groups in December 2020 to identify preliminary themes. During July-October 2021, 17 key informant interviews and 16 stakeholder listening sessions were held, involving 103 different organizations. Qualitative data analysis using an inductive approach was used to identify key themes. A significant issue for diverse caregivers is widespread lack of self-identification as caregivers, which is tied to a lack of awareness of potentially helpful services and supports; culturally appropriate outreach is critical to ensure access to services, as well as access to centralized resources and funding for community- and faith-based organizations. A community health worker model was recommended. Tailored activities, involving trusted community- and faith-based groups, as well as investments in caregiver- and culturally-specific supports, are critical for reaching the diverse family caregivers who most need supports. Raising awareness of caregiving among and taking advantage of the expertise of professionals working with diverse communities is also crucial.

Evaluation of a stroke rehabilitation training programme for community-based primary healthcare.

Family caregiver training is an integral part of stroke rehabilitation programmes and is associated with improved caregiver and stroke survivor outcomes. In the Cape Winelands District, a low-resourced rural community-based setting in South Africa, stroke survivors and family caregivers mostly rely on assistance from community health workers (CHWs), despite their lack of stroke-specific rehabilitation training. To evaluate the implementation and immediate effects of a bespoke, 16 session, 21 h stroke rehabilitation training programme for CHWs to better support family caregivers. Two cooperative inquiry groups participated in participatory action research to design and develop the programme. This article reports on the implementation of this programme. Inquiry group members directly observed the training, obtained written and verbal feedback, interviewed CHWs and observed them in the community. Consensus on their learning was achieved after reflection on their experience and observations. Learning of the cooperative inquiry groups was categorised into the effect on community-based care, the training programme's design and development, how training was delivered and implications for service delivery. Community health workers empowered caregivers and stroke survivors and enabled access to care, continuity, coordination and person-centredness. The need for experiential learning and a spiral curriculum was confirmed. Therapists needed a different set of skills to deliver training. A systems approach and effective leadership were needed to enable community health workers to use their new skills. The stroke rehabilitation training programme demonstrated potential for integration into service delivery and equipping CHWs to support family caregivers and stroke survivors. Further evaluation of the programme's effectiveness and scale-up is needed. Evidence of an intervention to train CHWs to support stroke survivors and family caregivers.

Investigation of the Effect of an Online Supportive Education Program on the Family Caregivers’ Resilience and Abuse of People with Dementia: A Controlled Randomized Trial

Dementia and its progressive nature necessitate care and impose dependency on family caregivers, exposing them to psychological distress and even abuse of people with dementia. The effects of psychological distress and subsequent abuse can be lessened with increased resilience. This study investigates the effect of a supportive online education program on family caregivers’ resilience and abuse of people with dementia. In total, 74 family caregivers of dementia patients participated in this controlled randomized trial, which was conducted from February 2022 to July 2022. Data were gathered using the Walsh Family Resilience Questionnaire, and the Caregiver Abuse Screen. The collected data were analyzed in SPSS software using descriptive and inferential statistics. There was no significant difference between the two groups in terms of baseline variables, resilience, and abuse. The intervention resulted in no significant difference in the scores of resilience ( p = .08) and abuse ( p = .447). Both the intervention ( p = .430) and control ( p = .082) groups showed no evidence of a significant change in resilience between before and after the intervention. However, a significant difference was found in the abuse scores before and after the study in the intervention group ( p = .022). The intervention did not significantly affect family caregivers’ resilience and abuse of people with dementia, but it reduced abuse in the intervention group. Taking note of these results, this study proposes other solutions to improve outcomes, and also education and support of family caregivers to diminish their abuse of people with dementia.

Managing Older Adults' Chronic Pain: Higher-Risk Interventions How to help caregivers promote safe pain management.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. This new group of articles provides practical information nurses can share with family caregivers of persons living with pain. To use this series, nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses. Cite this article as: Arnstein, P., et al. Managing Older Adults' Chronic Pain: Higher-Risk Interventions. Am J Nurs 2023; 123 (4): 56-61.

Adapting a Dutch Web-Based Intervention to Support Family Caregivers of People With Dementia in the UK Context: Accelerated Experience-Based Co-Design.

Around 700,000 family caregivers provide unpaid care for 900,000 people living with dementia in the United Kingdom. Few family caregivers receive support for their own psychological needs and funding for community respite services has declined. These trends are seen across Europe as demographic and budgetary pressures have intensified due to public spending cuts arising from the 2008 financial crisis and the COVID-19 pandemic. The World Health Organization has prioritized the need to expand the provision of support for caregivers and families of people with dementia by 2025. Web-based interventions have the potential for development as they require modest investment and can be accessed by family caregivers at home. Further cost benefits can be realized by adapting existing interventions with demonstrated effectiveness for new contexts. This paper reports initial findings from the CareCoach study, which is adapting Partner in Balance (PiB), a web-based coaching intervention developed in the Netherlands, for family caregivers in the United Kingdom. This study aims to work with unpaid family caregivers and staff in adapting the Dutch web-based support tool PiB to improve its acceptability and usability for use in the United Kingdom. Accelerated Experience-Based Co-Design (AEBCD) was used with caregivers, staff, and core stakeholders. Interviews, workshops, and stakeholder consultations were conducted. Data were analyzed iteratively. Recommendations for the redesign of PiB for use across the United Kingdom were adjudicated by the study Adaptation Working Party. Sixteen caregivers and 17 staff took part in interviews. Thirteen caregivers and 17 staff took part in workshops. Most (n=26) participants were White, female, and retired. All except 4 caregivers (2 male and 2 female) found the PiB's offer of web-based self-help learning acceptable. Caregivers identified complexity and lack of inclusivity in some wording and video resources as problematic. The staff took a stronger perspective on the lack of inclusivity in PiB video resources. Staff and caregivers coproduced new inclusive wording and recommended creating new videos to adapt PiB for the UK context. AEBCD methods facilitated the engagement of caregivers and staff and advanced the adaptation of the PiB complex intervention. An important addition to the AEBCD method in this process was the work of an Adaptation Working Party, which adjudicated and agreed to new wording where this could not be established in consultation with caregivers and staff. ISRCTN Registry ISRCTN12540555; https://doi.org/10.1186/ISRCTN12540555.

Barriers and Support for Family Caregivers in Caring for Older Adults with Dementia: A Qualitative Study in Indonesia

Background: Understanding the barriers and support that family caregivers face when caring for older adults with dementia is critical for improving the quality of dementia care. However, research in this area remains limited in Indonesia. Purpose: This study aimed to explore the barriers and support for family caregivers in caring for older adults with dementia in Indonesia.Methods: A descriptive phenomenological study was conducted among 15 family caregivers who cared for older adults with dementia. Purposive sampling was used to recruit the participants. Inclusion criteria included primary family caregivers who provided care for four hours per day for at least six months, were proficient in Indonesian, assisted older adults in daily activities, and were capable of expressing their experiences. Data were collected using in-depth semi-structured interviews and analyzed using the Colaizzi method. Results: This study found that family caregivers faced barriers during the care of older adults with dementia, which have decreased the quality of care. These barriers included inadequate knowledge and skills of family caregivers regarding dementia, stigma, lack of knowledge and awareness in the community, limited availability of healthcare services, and healthcare professionals’ lack of knowledge about dementia. On the other hand, support received by family caregivers within the family, support from other family caregivers, and education provided by NGOs about caring for someone with dementia have shown a positive impact in reducing the burden on caregivers and improving the quality of care. Therefore, appropriate support is essential for family caregivers caring for older adults with dementia.Conclusion: This study showed that barriers originating from family caregivers, community awareness, access to health services, and barriers from health workers have impacted poor quality of care, while the support of families, fellow family caregivers, and NGOs have contributed to good quality of care. Further studies are needed to explore the perspectives of family caregivers representing different cultures in Indonesia.

Family caregiver readiness to adopt smart home technology to monitor care-Dependent older adults: A qualitative exploratory study.

The aim of this study was to explore factors that influence family caregiver readiness to adopt health smart home technology for their care-dependent older adult family member. Health smart homes are designed to remotely monitor the health and wellness of community-dwelling older adults supporting independent living for as long as possible. Accordingly, if the health smart home is deployed into the home of a care-depended older adult, it can potentially support family caregivers by facilitating workforce participation and give piece of mind to the family caregiver who may not live close to the older adult. However, wider adoption of health smart home technologies into the homes of community-older adults is low, and little is known about the factors that influence the readiness of family caregivers to adopt smart home technologies for their care-dependent older adults. A qualitative Descriptive study design was utilized. Qualitative data were collected between 2019 and 2020 via semi-structured interviews. Thematic analysis of interviews was completed, and data were organized into themes. Study findings show that caregiver readiness (N = 10) to adopt smart home technology to monitor older adult family members were influenced by five primary themes including a 'big brother effect', 'framing for acceptance', 'data privacy', 'burden' and 'cost.' Family caregivers were open to adopting smart home technology to support the independent living of their older adult family members. However, the readiness of family caregivers was inextricably linked to the older adults' readiness for smart home adoption. The family caregiver's primary concern was on how they could frame the idea of the smart home to overcome what they viewed as hesitancy to adopt in the older adult. The findings suggest that family caregivers endeavour to balance the hesitancy in their older adult family members with the potential benefits of smart home technology. Family caregivers could benefit if their care-dependent older adults adopt smart home technology. Recognizing the role of caregivers and their perspectives on using smart home technologies with their care-dependents is critical to the meaningful design, use and adoption.

Clinic-based Assessment and Support for Family Caregivers of Patients With Cancer: Results of a Feasibility Study.

Cancer caregiving is burdensome with unique needs, highlighting the importance of assessing caregivers' distress. Caregivers often accompany patients to healthcare visits, presenting an opportunity to complete distress screening at patients' point-of-care. To evaluate the feasibility of caregiver distress screening at patients' point-of-care and implementing a caregiver psychoeducational session. We approached caregivers in outpatient cancer clinic waiting rooms. Participants completed depression, burden, anxiety, quality of life, and stress measures. A psychoeducational session with a psychologist was offered to those meeting clinical cutoffs for depression and/or burden. Fifty caregivers completed 1+ measure; however, due to incomplete consent documentation, findings from 23 caregivers are reported. 22% of caregivers screened positive for depression, 30% burden, and 70% anxiety. More than half rated stress as moderate or higher. Mental wellbeing was slightly below that of the general population. More than 75% screened positive on 1+ distress measure. Of the 9 caregivers who met cutoffs for depression and/or burden, two (22%) accepted the psychoeducational session. Caregivers were moderately receptive to distress screening during patients' visits, but were less receptive to engaging in the psychoeducational session due to time constraints and privacy concerns. Assessing caregivers' distress can facilitate referrals for supportive services. Offering caregivers psychoeducational intervention outside of patient care may not be acceptable. Future research may evaluate the integration of routine caregiver screening within patient care to promote engagement with mental health services. This research offers a unique method of assessing cancer caregivers' distress.

Effectiveness of family interventions for patients with schizophrenia: A systematic review and meta-analysis.

The family is the primary caregiver for most patients with schizophrenia, and their roles are essential in patients' illness trajectories and outcomes. Due to this, various family interventions for schizophrenia have been developed and applied to the relatives who take care of their family members with schizophrenia. This study examined the effectiveness of existing family interventions for schizophrenia in achieving their target outcomes at both the family and patient levels by utilizing a systematic review and meta-analysis. Combinations of terms were used to search for relevant studies from the databases. Thirty-seven randomized controlled trials that met the inclusion criteria were included in the analysis. Based on the pooled result of the included studies, the programmes significantly improved the targeted outcomes with large effect size. The programmes' impacts on family-related outcomes were higher than those on patients. Among the targeted outcomes, patients' treatment satisfaction and adherence and family caregivers' mental health were the most remarkable outcomes that had improved from the included programmes. Conversely, outcomes related to family relationships, caregiving experiences, perceived social support of family caregivers, and patients' medication use did not see significant improvements. The programmes delivered to individual family units and only to the family caregivers were more effective than those delivered to groups of caregivers and caregivers and patients together, respectively. Programme-focused interventions were more effective than emotion-focused ones. Based on these findings, an in-home visiting nurse programme or advanced technology is suggested when applying family interventions for schizophrenia in practice.

Research trends over 10 years (2010-2021) in infant and toddler rearing behavior by family caregivers in South Korea: text network and topic modeling.

This study analyzed research trends in infant and toddler rearing behavior among family caregivers over a 10-year period (2010-2021). Text network analysis and topic modeling were employed on data collected from relevant papers, following the extraction and refinement of semantic morphemes. A semantic-centered network was constructed by extracting words from 2,613 English-language abstracts. Data analysis was performed using NetMiner 4.5.0. Frequency analysis, degree centrality, and eigenvector centrality all revealed the terms ''scale," ''program," and ''education" among the top 10 keywords associated with infant and toddler rearing behaviors among family caregivers. The keywords extracted from the analysis were divided into two clusters through cohesion analysis. Additionally, they were classified into two topic groups using topic modeling: "program and evaluation" (64.37%) and "caregivers' role and competency in child development" (35.63%). The roles and competencies of family caregivers are essential for the development of infants and toddlers. Intervention programs and evaluations are necessary to improve rearing behaviors. Future research should determine the role of nurses in supporting family caregivers. Additionally, it should facilitate the development of nursing strategies and intervention programs to promote positive rearing practices.

Investigating the experiences of family caregivers who shackle people with mental disorders.

The mental health literacy gap has resulted in the shackling of people with mental illness by family caregivers. Although shackling violates human rights and impacts physical and psychological health, it still occurs in some countries, such as Indonesia. An in-depth study using the family function approach is needed to distinguish the components behind the application of shackling by families to find solutions to prevent shackling. Thus, this study aims to identify family functions in people with mental disorder (PWMD) care and to create a family care model for PWMD in accordance with the family function approach and recommendations for preventing shackling. This qualitative research used a phenomenological approach, involving eight participants who are family caregivers and live with their patients. Triangulation was conducted by applying interviews with four health cadres to confirm previous information. The process of in-depth interviews and observational data collection methods was carried out until reaching data saturation. The data analysis process used Collaizi's pattern to formulate three main themes, namely confinement as the final solution for the family, the specifics of confinement, and the family's purpose for confinement. The conclusion is that shackling occurs due to a lack of understanding of the impact of shackling and the various limitations experienced, so shackling becomes the last resort when dealing with patients. Peer support is very important for families to prevent the confinement of mentally ill family members. Technological advances are an inherent need in everyday life and must support family caregivers with mental disorders.

Nursing Protocol: Supporting Family Caregivers

Nursing Protocol: Supporting Family Caregivers

“Standing alone”: understanding the self-management of family caregivers of persons post-stroke at the time of acute care

Purpose To support family caregivers of persons post-stroke adequately from the start and to develop self-management interventions, we aim to gain a better understanding of family caregivers experiences at the time of acute care and therefore achieve a better understanding of how they manage their new situation. Methods and Materials We chose a qualitative descriptive methodology using individual semi-structured interviews with eleven family caregivers of persons post-stroke. We conducted interviews retrospectively, between 2 and 10 months post-stroke, and analysed transcripts using thematic analysis. Results The themes (1) being in survival mode, (2) feeling supported by family and friends, (3) feeling left alone by the treatment team and (4) insisting on information emerged from the data. Conclusion During acute care, many self-management skills are required from family caregivers but are just starting to be developed. This development can first be observed as co-management with the social network and is often combined with shared decision-making. Information-sharing, foundational for developing self-management, is essential for family caregivers and should be supported proactively by health professionals from the beginning. Further, from the start, health professionals should raise awareness about role changes and imbalances of activities among family caregivers to prevent negative influences on their health.