Well-being Care Research Articles

A mixed methods evaluation of a program exploring predeath grief and loss for carers of people with rarer dementias.

Predeath grief conceptualizes complex feelings of loss experienced for someone who is still living and is linked to poor emotional well-being. The Road Less Travelled program aimed to help carers of people with rarer dementias identify and process predeath grief. This study evaluated the feasibility, acceptability, and preliminary effectiveness of this program. Pre-post interventional mixed methods study. Online videoconference group program for carers across the UK held in 2021. Nine family carers of someone living with a rare form of dementia. Eight were female and one male (mean age 58) with two facilitators. The Road Less Travelled is an online, facilitated, group-based program that aims to help carers of people with rarer dementias to explore and accept feelings of grief and loss. It involved six fortnightly 2-hour sessions. We collected measures for a range of well-being outcomes at baseline (T1), post-intervention (T2), and 3 months post-intervention (T3). We conducted interviews with participants and facilitators at T2. Participant attendance was 98% across all sessions. Findings from the semistructured interviews supported the acceptability of the program and identified improvements in carer well-being. Trends in the outcome measures suggested an improvement in quality of life and a reduction in depression. The program was feasible to conduct and acceptable to participants. Qualitative reports and high attendance suggest perceived benefits to carers, including increased acceptance of grief, and support the need for a larger-scale pilot study to determine effectiveness.

56 - Online information about mental health and well-being for UK patients and carers living with mesothelioma: an internet search study

56 - Online information about mental health and well-being for UK patients and carers living with mesothelioma: an internet search study

Influence of placement stability on developmental outcomes of children and young people in out-of-home care: Findings from the Pathways of Care Longitudinal Study

BackgroundPlacement stability is an important indicator of the functioning of an out-of-home care system. Previous research suggests that frequent placement changes have a negative impact on the outcomes for children and young people in out-of-home care. ObjectiveThis paper examines the association between placement stability in out-of-home care and children's socio-emotional, cognitive and physical health outcomes. Participant and settingThe Pathways of Care Longitudinal Study (POCLS) is the first large-scale prospective longitudinal study of children in out-of-home care in Australia. The sample consists of any study child who participated in any of the first three waves of the POCLS interview. MethodsUnweighted data from the first three waves of the POCLS interview and administrative data was used. A measure of placement stability was developed that accounted for both number of placements and length of time in care. Mixed effect modelling was used to examine the link between placement stability and children's developmental outcomes. ResultsPlacement stability was found to have a significant association with socio-emotional, cognitive (non-verbal) and physical health (gross and fine motor skill) development. A number of other factors were also found to be associated with positive development. ConclusionsThe findings support the existing evidence that placement stability is an important factor for children's development. Other factors including placement type, carer wellbeing and carer support are also important for positive development. Appropriate policy and practice intervention to support children and families to improve placement stability is fundamental to achieving positive developmental outcomes for children in out-of-home care.

‘Different things at different times’: Wellbeing strategies and processes identified by parents of children who have an intellectual disability or who are autistic, or both

Most parents of children with an intellectual disability or who are autistic identify positives in their family life and their own wellbeing, in addition to reported mental health challenges. Several models and interventions have been developed in relation to parent carer wellbeing. Few studies have asked parent carers how they support their own wellbeing. Adopting an interpretive phenomenological approach this study utilised semi-structured interviews. Seventeen parent carers were asked what supported their emotional wellbeing. Template Analysis was applied to develop themes. All participants identified factors that supported their wellbeing. Themes included strategies that countered stress (time for themselves, relaxation, 'parking' difficulties) and broader wellbeing strategies (finding meaningful life direction, greater understanding of child). An ongoing process of supporting wellbeing by 'Reorienting and Finding Balance' appeared central. Self-identified, multi-dimensional strategies benefit parents' emotional wellbeing and should be considered in the context of support provided to families.

Moral distress in carers for people with an intellectual disability who died during the COVID-19 pandemic, a template analysis extending the Barlem and Ramos model of moral distress.

This article aims to understand moral distress in carers of people with an intellectual disability during the COVID-19 pandemic. Nine staff carers of seven people with an intellectual disability, who had been participants of the IDS-TILDA study in Ireland, who died during the COVID-19 pandemic participated in in-depth, semi-structured telephone interviews. Template analysis was used to analyze the interviews. Obstructions in performing their duties left carers feeling powerless and experiencing moral conflict distress, moral constraint distress and moral uncertainty distress. Most managed to connect to the moral dimension in their work through peer support, understanding they fulfilled the wishes of the deceased, and/or thinking about how they or others did the best they could for the person they were caring for. This research demonstrates that while restrictions may have been effective in reducing the spread of COVID-19, they were potentially damaging to carer wellbeing.

Evaluation of a brief carer support intervention

There is international evidence that informal or unpaid carers have poorer mental health and experience higher levels of isolation and stress than others in the population. Identifying approaches that promote carer well-being is critical to supporting this essential role in the community. This study presents the findings of the evaluation of a brief carer intervention designed to improve carers’ well-being delivered by a community service organisation. The manualised programme provided information and psycho-education to adult carers in five regional locations in Victoria, Australia. Positive change was noted in carers’ knowledge of good mental health and well-being, supports, and social connectedness.

Impacts of health care service changes implemented due to COVID-19 on children and young people with long-term disability: A mapping review.

To identify the research on childhood disability service adaptations and their impact on children and young people with long-term disability during the COVID-19 pandemic. A mapping review was undertaken. We searched the World Health Organization Global COVID-19 database using the search terms 'children', 'chronic/disabling conditions', and 'services/therapies'. Eligible papers reported service changes for children (0-19 years) with long-term disability in any geographical or clinical setting between 1st January 2020 and 26th January 2022. Papers were charted across the effective practice and organization of care taxonomy of health system interventions and were narratively synthesized; an interactive map was produced. Reduction of face-to-face care and usual provision had a huge impact on children and families. Adoption of telehealth provided continuity for the care and management of some conditions. There was limited evidence of changes to mental health services, transitions of care, social care, or child-reported satisfaction or acceptability of service changes. The long-term impacts of service change during the pandemic need full evaluation. However, widespread disruption seems to have had a profound impact on child and carer health and well-being. Service recovery needs to be specific to the individual needs of children with a disability and their families. This should be done through coproduction to ensure that service changes meet needs and are accessible and equitable.

‘it was that … specialist … that finally listened to us … that's probably a weird answer to what you were expecting’: Clinician and carer perspectives on brilliant feeding care

To extend research on positive aspects of health care, this article focusses on health care for children who tube-feed-this is because knowledge about tube-feeding for children is limited and fragmented. This is achieved by consulting with clinicians and carers who supported children who tube-feed to clarify their understandings of and experiences with brilliant feeding care. Nine clinicians and nine carers who supported children who tube-fed were interviewed. The interview transcripts were analysed thematically. Findings highlighted several features of brilliant feeding care-namely: practices that go above and beyond; attentiveness; empowerment; being 'on the same page'; hopefulnessand normalcy. These findings show that seemingly trivial or small acts of care can make a significant meaningful difference to carers of children who tube-feed. Such accounts elucidate brilliant care as grounded in feasible, everyday actions, within clinicians' reach. The implications associated with these findings are threefold. First, the findings highlight the need for clinicians to listen, be attuned and committed to the well-being of children who tube-feed and their carers, share decision-making, source resources,and instil hope. Second, the findings suggest that carers should seek out and acknowledge clinicians who listen, involve them in decision-making processes, and continue to source the resources required to optimize child and carer well-being. Third, the findings point to the need for research to clarify the models of care that foster brilliant feeding care, and the conditions required to introduce and sustain these models. All of the carers and clinicians who contributed to this study were invited to participate in a workshop to discuss, critique,and sense-check the findings. Three carers and one clinician accepted this invitation. Collectively, they indicated that the findings resonated with them, and they agreed with the themes, which they indicated were well-substantiated by the data.

Impacts of the COVID-19 pandemic on carer-employees’ well-being: a twelve-country comparison

The aim of this analysis is to assess the potential ways that the COVID-19 pandemic has impacted Canadian carer-employees (CEs) and identify the needs CEs feel is required for them to continue providing care. We assess the similarities and differences in the stresses CEs faced during COVID-19 globally across countries in the G7, Australia, Spain, Brazil, Taiwan, India, and China. We aim to compare Canada against global trends with respect to the challenges of the COVID-19 pandemic, as well as the supports in place for CEs. The study utilized 2020 Carer Well-Being Index at the country level. Descriptive data on Canadian CEs is first reviewed, followed by comparisons, by country, on responses relating to: (a) time spent caring; (b) sources of support; (c) impact on paid work and career, and; (d) emotional/mental, financial, and physical health. The relationship between government support and emotional/mental health is also explored. When compared to pre-pandemic times, CEs in Canada on average spent more time caregiving, with 34% reporting more difficulty balancing their paid job and caring responsibilities. Seventy-one percent of CEs feel their mental health has deteriorated. Thirty-four percent of Canadian CEs received support from the government, and only 30% received support from their employers. Globally, there was a similar trend, with CEs experiencing deteriorating mental health, work impacts, and unmet needs during the pandemic. Comparing the well-being of Canadian CEs with other countries provides an opportunity to evaluate areas where Canadian policies and programs have been effective, as well as areas needing improvement.

Strategies and checklist for designing and conducting palliative care research with family carers: EAPC international expert elicitation study

Background: Palliative care services seek to improve the wellbeing of family carers of people living with serious and life-limiting illness. To help achieve this goal, systematic reviews have recommended priority areas for family carer research and the need to improve the quality of study design. Policy makers have also advocated for enhanced family carer support. However, there are specific methodological considerations and challenges in designing and conducting carer research conducted during the course of the serious illness trajectory and in bereavement. Aim: To develop strategies to improve the design and conduct of research with family carers. Design: Expert elicitation study using an adapted version of the ‘Identify, Discuss, Estimate and Aggregate’ elicitation protocol, supplemented with strategies from peer-reviewed literature. Setting/participants: Nine members of the management committee of the European Association for Palliative Care’s Reference group on family carer research, comprising international senior research academics in family caregiving. Results: A compilation of recommended strategies and checklist was created to: (a) help researchers plan research involving family carers focussing on: preparation, conduct and dissemination and (b) assist ethics committees and funding bodies to evaluate proposals. Conclusions: The strategies and checklist for conducting research with family carers may enhance methodologically rigorous research. Consequently, researchers, practitioners and policy makers will not only gain a more comprehensive understanding of the unmet needs of family carers but also promote the development of empirically sound interventions.

Informal caregiving, time use and experienced wellbeing.

Informal carers report lower evaluative wellbeing than non-carers. In contrast to this literature and our own analysis of evaluative wellbeing, we find carers have a small but higher level of experienced wellbeing than non-carers do. To investigate why, we use decomposition analysis which separates explanatory factors into how time is used and how those uses of time are experienced. We analyze activities and associated experienced wellbeing measured in ten-minute intervals over two days by 4817 adults from the 2014/15 UK Time Use Survey. We use entropy balancing to compare carers with a re-weighted counterfactual non-carer group and then apply Oaxaca-Blinder decomposition. The experienced wellbeing gap of 0.066 is the net result of several substantial competing effects of time use. Carers experienced wellbeing would be higher by 0.188 if they had the same patterns and returns to time use as non-carers which is driven by sleep, time stress and alternative characteristics of time use. However, leisure and non-market activities serve to dampen this increase in experienced wellbeing. Initiatives to improve and assess carer wellbeing should pay close attention to how carers spend their time.

The lived experience of carers who assist people with disability in Ernakulam, Kerala, India

Purpose Family members are preferred providers of care for people with disability in India. Despite this, research which evaluates the impact of caregiving is limited. This qualitative study provides a comprehensive, in-depth exploration of the lived experience of carers who provide assistance to persons with a disability in Southwest India. Methods In this qualitative study, 20 carers who assist persons with disability were purposively selected to undertake semi-structured interviews across a variety of domains. Data analysis was informed by Attride-Stirling’s thematic network analysis. Results Five global themes were identified which included; carers commitment to caring; concurrent demands of caregiving; mental and physical health of carers; networks and sources of non-financial support; and finances – strains and supports. Conclusions This study provides an in-depth exploration of the lived experience of carers in Kerala, India which will inform the future development of interventions to assist primary carers. Implications for rehabilitation Family members are preferred providers of care for people with disability in India. By understanding the issues that affect carers who assist people with disability, it is possible to develop more effective, targeted, and sustainable interventions, that meet the needs of carers and alleviate some of their burden. Improving the health and wellbeing of carers needs to be urgently addressed in order to improve outcomes for those with disability – whom they care for.

Exploring challenges affecting resilience in carers of stroke survivors: a qualitative descriptive study

Purpose To develop an intervention to build resilience in carers of stroke survivors this study aimed to understand these carers’ (1) Challenges that adversely affect their resilience, and (2) suggestions for a relevant intervention to build resilience. Methods Individual semi-structured interviews were used. Participants included carers of stroke survivors (stroke duration > six months). Transcripts were analysed using the General Inductive Approach. This study followed guidelines of Consolidated criteria for Reporting Qualitative research (COREQ). Results Four themes were identified that affected resilience: (1) carer psychosocial outcomes, (2) stroke’s sudden and unexpected impact, (3) financial stressors, and (4) carer exclusion in care planning. Carers suggested an intervention comprising information sharing and training in coping skills, positive communication, problem-solving, and connection with “people who have gone through this” to improve resilience. Most supported a group, monthly delivery of the intervention. Conclusion These findings provide direction for a suitable intervention. Further, they suggest that stroke rehabilitation could be improved by adopting a family-centered model of care so that carers can be included as active partners in care process. Protecting carers from the negative impact of caring role on their resilience may sustain their ability to provide long-term care for the stroke survivor. IMPLICATIONS FOR REHABILITATION The provision of informal care to stroke survivors can be associated with significant emotional consequences, withdrawal from social activities, and poor quality of life for the carers. The abruptness of stroke presentation along with its long-term nature can negatively affect the resilience of informal carers. Exploration of challenges affecting carer resilience is important to develop interventions to build resilience in carers of stroke survivors. Integrating interventions focusing on carers’ resilience as part of the stroke rehabilitation process is imperative to ensure well-being of carers and sustainability of the care provided to the stroke survivor.

Multiple Identities of Employed Informal Elderly Filial Carers and Their Impact on Carer Wellbeing

Relying primarily on work-family conflict theory (WFC), informal care has attracted attention by researchers, policy makers, and society, but few studies have explored specifically informal filial elderly care. Few attempts have been made to investigate the role of the multiple identities of the informal elderly filial carers, those being carer identity, employee identity and personal identity. No study has looked specifically at the impact of those identities to carer wellbeing, which incorporates their subjective and psychological wellbeing. We build on a multiple identity theoretical framework to propose that the three aforementioned identities have an impact on carer wellbeing. We further combine these identities in different configurations and propose that they vary in the ways in which they affect informal elderly filial carers’ wellbeing. Drawing from this configurational framework, we put forth a typology of employed informal elderly filial carers that postulates the possible outcomes for carer wellbeing.

Care Task Division in Familialistic Care Regimes: A Comparative Analysis of Gender and Socio-Economic Inequalities in Austria and Slovenia

Demographic aging has led to an increase in the number of people with multiple needs requiring different types of care delivered by formal and informal carers. The distribution of care tasks between formal and informal carers has a significant impact on the well-being of carers and on how efficiently care is delivered to users. The study has two aims. The first is to explore how task division in care for older people differs between two neighboring countries with different forms of familialism: Slovenia (prescribed familialism) and Austria (supported familialism). The second is to explore how income and gender are associated with task division across these forms of familialism. Multinomial logistic regression is applied to SHARE data (wave 6, 2015) to estimate five different models of task division, based on how personal care and household help are distributed between formal and informal carers. The findings show that the task division is markedly different between Slovenia and Austria, with complementation and supplementation models more frequent in Austria. Despite generous cash benefits and higher service availability in Austria, pro-rich inequalities in the use of formal care only are pervasive here, unlike in Slovenia. Both countries show evidence of pro-poor inequalities in the use of informal care only, while these inequalities are mostly absent from mixed models of task division. Generous cash transfers do not appear to reduce gender inequalities in supported familialism. Supported familialism may not fundamentally improve inequalities when compared with less generous forms of familialism.

Positive experiences in dementia care-giving: findings from the IDEAL programme

AbstractThere is a growing evidence base that identifying positive experiences in providing care can have a beneficial influence on carer wellbeing. However, there is a need to better understand what carers identify as the positive aspects of care-giving. The aim of this study is to explore the satisfying aspects of providing care to people with dementia. This study utilised Time 1 data from 1,277 carers of people in the mild-to-moderate stages of dementia taking part in the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort study. Responses from 900 carers who answered the open-ended question ‘What is your greatest satisfaction in caring for your relative/friend?’ were analysed using thematic analysis. From the responses, 839 carers detailed satisfactions. Eight themes were identified, pertaining to three groups of beneficiaries: carers, people with dementia and the dyad. Perceived benefits for carers included identifying aspects of personal growth, seeing glimpses of the person, feeling they were making a difference and doing their duty. For the person with dementia, these included retaining independence, receiving good quality care and being happy. Dyadic benefits concerned the continuation of the relationship between carer and person with dementia. The findings highlight the need to take a dyadic approach when conceptualising positive experiences in providing care. Further research is needed to understand the role these positive experiences play and to develop interventions. Professionals working with carers should identify and validate these experiences.

Rapid development of a COVID-19 care planning decision-aid for family carers of people living with dementia.

IntroductionCOVID‐19 has disproportionately affected people living with dementia and their carers. Its effects on health and social care systems necessitated a rapid‐response approach to care planning and decision‐making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. Considering this, a decision‐aid to help families of persons with dementia was developed.ObjectivesTo coproduce with people living with dementia, and the people who care for them, a decision‐aid for family carers of people living with dementia, to support decisions during the COVID‐19 pandemic and beyond.MethodsSemi‐structured interviews were undertaken in 2020 with: (1) staff from two English national end‐of‐life and supportive care organizations; and (2) people living with dementia and family carers. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken. Evidence from these inputs was combined to shape the decision‐aid through a series of workshops with key stakeholders, including our patient and public involvement group, which consisted of a person living with dementia and family carers; a group of clinical and academic experts and a group of policy and charity leads.ResultsThe rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision‐making and their effects on people living with dementia and their families. The qualitative interviews discussed a wide range of topics, including trust, agency and confusion in making decisions in the context of COVID‐19. The decision‐aid primarily focussed on care moves, legal matters, carer wellbeing and help‐seeking.ConclusionsCombining different sources and forms of evidence was a robust and systematic process that proved efficient and valuable in creating a novel decision‐aid for family carers within the context of COVID‐19. The output from this process is an evidence‐based practical decision‐aid coproduced with people living with dementia, family carers, clinical and academic experts and leading national dementia and palliative care organizations.Patient or Public ContributionWe worked with people living with dementia and family carers and other key stakeholders throughout this study, from study development and design to inclusion in stakeholder workshops and dissemination.

A qualitative exploration of the physical and psychological wellbeing of family carers of veterans in Australia.

Family carers of veterans have a tendency not to seek support for their own wellbeing concerns. Understanding the barriers and enablers that family carers face in attending to their own wellbeing and in their caring role generally, is key to supporting family carers of veterans. This qualitative study sought to explore family carers’ experiences and perceptions of their caring role, using semi-structured interviews. Questions were designed to capture concepts related to the barriers and enablers family carers face in attending to their own wellbeing. Twenty-two family carers participated in interviews. Thematic analysis facilitated the identification of key themes including the impact of the caring role; a perceived lack of recognition or appreciation of the caring role; expressed preferences for support; and consideration of the family unit. Findings suggest a need for accessible and multi-faceted support services for family carers of veterans, that target the drivers of physical and psychological wellbeing.

Caring in the time of COVID-19, longitudinal trends in well-being and mental health in carers in Ireland: Evidence from the Irish Longitudinal Study on Ageing (TILDA)

BackgroundThe COVID-19 pandemic in 2020 resulted in the older population being asked to remain at home and avoid other people outside their household. This could have implications for both receipt and provision of informal caring. ObjectiveTo determine if informal care provision by older carers changed during the first wave of the COVID-19 pandemic from pre-pandemic care and if this was associated with a change in mental health and well-being of carers. Design and settingLongitudinal nationally representative study of community dwelling adults from The Irish Longitudinal Study on Ageing (TILDA) (Waves 3-COVID-Wave 6). MethodsWe studied a cohort of 3670 adults aged ≥60 in Ireland during the COVID-19 pandemic (July-November 2020) and compared with previous data collections from the same cohort between 2014-2018. Independent variables were caregiving status and caregiving intensity, outcome measures included depressive symptoms (CES-D8), Perceived Stress (PSS4) and Quality of life (CASP12). Mixed models adjusting for socio-demographics and physical health were estimated. ResultsCaregiving increased from 8.2% (2014) to 15.4% (2020). Depression, and stress scores increased while quality of life decreased for all participants. Carers reported poorer mental health, and higher caring hours were associated with increased depression and stress and decreased quality of life scores on average, and increased depression was higher for women. ConclusionsInformal caregiving increased during the pandemic and family caregivers reported increased adverse mental health and well-being and this continued throughout the early months of the pandemic. The disproportionate burden of depression was highest in women providing higher caring hours.

Integrative review of singing and music interventions for family carers of people living with dementia.

Summary The majority of people living with dementia are cared for by their families. Family carers play a vital role in upholding the formal care system. Caring for a family member with dementia can be fulfilling. However, this role can have a considerable negative impact on family carers’ mental and physical health and quality of life. Several empirical research studies have recently been conducted that explore the potential benefits of music interventions for family carers of people living with dementia. Singing has been the primary musical medium employed. This article presents the first review of this literature to date. It investigates the impact of music interventions on the health and well-being of family carers of people living with dementia, and how they experience and perceive these interventions. Whittemore and Knafl’s five-stage integrative review framework was utilized: (i) problem identification; (ii) literature search; (iii) data evaluation; (iv) data analysis and synthesis; and (v) presentation of the findings. A total of 33 studies met the inclusion criteria. Analysis and synthesis resulted in three overarching themes: impact on family carers, carer perceptions of music interventions and null quantitative findings in small studies. The review found that singing and music interventions may improve family carers’ social and emotional well-being, enhance their ability to cope and care and ameliorate the caring relationship, contributing to experiences of flourishing. However, it highlighted that this area is under-researched and pointed to the need for larger, more rigorous studies.