Well-being Care Research Articles

Promoting Mental Health and Well-Being Among Adolescent Young Carers in Europe: A Cross-National Randomized Controlled Trial Study

Background/Objectives: This cross-national study focuses on adolescents who provide care and support to family members or significant others. Current evidence regarding their mental health and solutions to strengthen it is limited and mostly available in a few countries. The aim of this study is to evaluate the results of a primary prevention intervention for improving the mental health and well-being of adolescent young carers (AYCs) aged 15–17 years in six European countries. The intervention was based on a psychoeducational program and tools adapted from the Discoverer, Noticer, Advisor, and Values (DNA-V) model. Methods: We designed a randomized controlled trial with 217 AYCs participating in the study, either in the intervention or control group. Quantitative and qualitative data were collected via questionnaires at baseline, post-intervention, and a 3-month follow up. Results: The results were mixed, as positive improvements in primary (i.e., psychological well-being and skills) and secondary (school/training/work functioning) outcomes were shown by the experimental group but, in most cases, they were not statistically significant. The qualitative data supported positive claims about the intervention and its appropriateness for AYCs. Conclusions: The study implementation during the peak of the COVID-19 pandemic forced the consortium to adapt the design and may have influenced the results. More long-term studies are needed to assess similar mental health programs with this hard-to-reach target group.

Psychological wellbeing among carers of children and adolescents with physical disabilities in North-Eastern Tanzania-a cross-sectional survey study.

Caring for physically disabled children, particularly in contexts where resources are often insufficient or absent, exposes primary carers to significant psychological strain. The lack of structured mechanisms to address this psychological burden poses a considerable threat to the wellbeing of both carers and the children with disabilities under their care. However, research on the psychological wellbeing of carers in Tanzania is scarce. This study aimed to evaluate the psychological wellbeing and symptoms of anxiety and depression, along with associated factors, of carers of children, and adolescents with physical disabilities in the Kilimanjaro region. A cross-sectional survey was conducted from November 2020 to June 2021 in the Kilimanjaro region, involving 212 carers. The Swahili versions of the WHO-5 Wellbeing Index and Hopkins Symptoms Check List-25 were used to assess psychological wellbeing and symptoms of anxiety and depression. Data were analysed using IBM SPSS Statistics V.28. Multivariable linear and binary logistic regression were used to assess the associations. More than four fifths (81%) of the carers were parents, and most of these parents were mothers (92%). Of the 212 carers, more than half (51%) exhibited poor psychological wellbeing, 42% had symptoms of anxiety, and 38% symptoms of depression. Notably, poor psychological wellbeing was significantly associated with symptoms of anxiety and depression. Results of a multivariable regression analysis indicated that extended family support was associated with better psychological wellbeing and lower odds of symptoms of anxiety and depression. A higher estimated monthly income was associated with better psychological wellbeing, and lower odds of symptoms of depression. Access to rehabilitation for the child was associated with improved psychological wellbeing and decreased likelihood of symptoms of anxiety. Many carers of children, and adolescents with physical disabilities in Tanzania are at high risk of having poor psychological wellbeing, and symptoms of anxiety and depression. Support from extended-family networks is crucial in promoting good psychological wellbeing. The government in Tanzania should improve rehabilitation services, especially in disadvantaged rural areas, and integrate mental-health screening for carers in both rehabilitation programmes and primary healthcare.

Carers in post-stroke aphasia: a scoping review of interventions and outcomes beyond communication partner training

Purpose Carers of people with aphasia face unique challenges. Research has demonstrated that these carers have a higher burden of care and more negative stroke-related outcomes in comparison to carers of stroke survivors without aphasia. The aim of this scoping review was to map the range of interventions for carers other than communication partner training and to examine their outcomes. Materials and methods We conducted a scoping review on this topic. Results Twenty studies were included. Most studies were case series with four randomised control trials. Both quantitative and qualitative approaches were used. Most studies occurred during the long-term phase of care. Two interventions had only carers as participants. Interventions were comprised of different combinations of intervention components including psychoeducation, skill-building, and support. There was high variability on who led the interventions, the format, and the dose/schedule. Twenty-eight different outcome measures for carers and dyads were used across various domains with overall positive outcomes post-intervention. Conclusions This review uncovered a wide range of formats, dosages, and outcome measures in interventions for carers. Encouragingly, the majority of these interventions included psychoeducation, skill-building, and support components. While most studies were case series, there are promising interventions that have the potential to enhance carer wellbeing.

What Impact Does the Diagnosis of Mild Cognitive Impairment Have on the Wellbeing, Everyday Behavior, and Healthcare Utilization of People and Their Carers? A Systematic Review.

Dementia is a major cause of disability and dependency globally. Mild cognitive impairment (MCI) is considered an early indicator of developing dementia. There are growing efforts to detect and diagnose MCI earlier; consequently, we need to understand the perspectives of individuals and carers regarding the implications of an MCI diagnosis. To systematically review qualitative literature to understand the impact of a MCI diagnosis on both the individual and their carers, focusing on wellbeing, everyday behaviors, and healthcare utilization. Key search terms were input into five databases. Studies were included if they were peer-reviewed qualitative research published in English that obtained perspectives of community-dwellers with MCI or carers and focused on either their wellbeing, everyday behaviors and/or healthcare utilization. The protocol was pre-registered on PROSPERO (CRD42021291995). Data was synthesized narratively. Key findings from 15 eligible articles highlighted the negative impact of an MCI diagnosis on the wellbeing of both individuals and carers, due to stigma and limited understanding regarding diagnosis/prognosis. Changes in everyday behavior varied, particularly regarding motivation to engage with physical activity, hobbies and social opportunities. Both individuals and carers were sometimes dissatisfied with healthcare services; ineffective communication during clinical consolations highlighted as a reason for lack of trust in clinicians. Results indicate that an MCI diagnosis impacts both people with MCI and their carers across key facets of life. There is a critical need to effectively communicate the diagnosis and prognosis of MCI to support wellbeing and everyday activities and ensure trust in healthcare services.

Supporting Carers: Study Protocol of a Meta-Review of Psychosocial Interventions for Carers of People With Cancer.

While there is a clear need for psychosocial interventions that promote the well-being of carers of patients with cancer, the corresponding evidence base is disparate, complex, and difficult for end users to navigate and interpret. Carers remain undersupported with a lack of dedicated, effective, evidence-based programs. We will conduct a meta-review to synthesize this evidence and determine the state of science in this field. This study aims to address the question, "what psychosocial interventions are available to promote the well-being of carers for people with cancer?" A meta-review will synthesize the relevant reviews of psychosocial interventions that have been developed and evaluated with carers for people with cancer. A total of 4 electronic databases (PsycInfo, MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews) will be searched for reviews published between January 2013 and December 2023. A team-based approach will be taken for screening and assessment of the returned records against the eligibility criteria to determine inclusion. Included reviews will be critically appraised using the Joanna Briggs Institute Critical Appraisal Checklist for Systematic Reviews and Research Syntheses. Relevant data on study characteristics, carer and patient populations, intervention details, and psychosocial outcomes will be extracted, synthesized, and the findings will be presented in a narrative format. It is anticipated that the study will be completed by October 2024. Ensuring that carers have access to evidence-based programs that promote their well-being as they care for loved ones is critical. This meta-review will contribute to program development and translation efforts by providing a clear picture of the intervention evidence base of carers of patients with cancer and identifying notable strengths, weaknesses, and gaps across the literature. The findings are anticipated to offer future directions to advance research in the field. PROSPERO (CRD42023403219); https://tinyurl.com/4tnzv49s. DERR1-10.2196/56403.

The impact of social isolation and loneliness on the well-being of carers of a person with dementia in aotearoa New Zealand.

Dementia is a leading cause of disability, and as the population ages, there will be a greater need for friends and family to care for people with Dementia. Unfortunately, informal care for a person with dementia is associated with poor psychological and physical health and lower quality of life of the caregiver. The aim of the present study was to understand how to best support caregivers within their communities by examining their experience of loneliness, isolation, and their relationship with well-being. The study used a representative sample of the New Zealand population in terms of ethnicity, age, gender, education, and income and asked people if they were a primary caregiver of a person with Alzheimer's Disease or related disorder. Both loneliness and isolation were linked to overall well-being; however, loneliness was a stronger predictor of satisfaction with relationships and feeling part of one's community. The findings highlight the importance of examining the multi-factorial constructs of social connectedness and question research attributing loneliness solely to reduced social involvement. As such, interventions for caregivers of a person with dementia need to target feelings of loneliness as well as their social isolation.

Persisting gaps in dementia carer wellbeing and education: A qualitative exploration of dementia carer experiences.

To explore the emotional wellbeing of dementia carers in the lead up to and during transition of a person living with dementia to a residential aged care facility. An interpretative qualitative study. Semi-structured interviews were conducted with informal carers of person living with dementia between February and June 2023. Data were analysed using an inductive thematic approach and resulted in three themes. The majority of carers were adult children (n = 19) and six were wives. Carers lived across metropolitan (n = 20) and regional settings (n = 5) in the most populous state of Australia. Three themes were identified which were attributed to different aspects of the carer role: (1) Carer emotional journey as dementia progresses - impacted by knowledge and lack of support; (2) Questioning decision making-underpinned by knowledge and confidence; and (3) Challenges in re-establishing identity - impacted by ongoing concerns. As dementia progresses carers of person living with dementia consistently reported gaps in knowledge including how to access support. Specifically, this study identified the need for more to be done to help carers to develop the skills needed for their role, including participation in care planning and identifying care preferences for the future. Nurses can play a key role in promoting referral to services that support carers. Findings offer practical solutions to ameliorate carer stress and promote shared decision making. This research was guided by the Consolidated Criteria for Reporting Qualitative Research.

Culturally adaptive healthcare for people with a learning disability from an ethnic minority background: A qualitative synthesis

AbstractBackgroundPeople with a learning disability face health inequality. Those from ethnic minority backgrounds with a learning disability face ‘double discrimination’ as members of two marginalised groups.MethodsThis codesigned review consolidated the evidence on the healthcare experiences of individuals and their carers from ethnic minority backgrounds with a learning disability. Three electronic databases were searched for UK studies from January 1990 to June 2022. Qualitative data from 28 studies were analysed using thematic framework analysis.FindingsThere was an overarching theme of ‘culture, choice and conflicts of control’, which related to the variable preferences for involvement in healthcare decisions. Cultural and individual factors impacted upon experience, with themes relating to ‘misunderstanding and mistrust’, ‘discrimination and stigma’, ‘isolation’, ‘feelings of shame and blame’, ‘burdens of care’ and ‘carer wellbeing’. Factors associated with healthcare‐seeking and care provision are described in the themes ‘triangles of care’, ‘community networks’ and ‘adaptive communication’.ConclusionsPeople from ethnic minority backgrounds with learning disability experience complex barriers which influence their healthcare experiences. Recognising and understanding discrimination can be difficult for people with a learning disability. Carers face challenges which influence their own wellbeing. Services need to be responsive to individual cultural contexts, while addressing potential conflicts of control.

The prevalence, characteristics, and psychological wellbeing of unpaid carers in the United Kingdom.

This study sought to describe the characteristics of unpaid carers in the UK and assess levels of depression, anxiety, and mental health treatment seeking behaviours in this population. Data was derived from Wave 9 (n = 2790) of the COVID-19 Psychological Research Consortium (C19PRC) study, a longitudinal survey of adults in the UK. Logistic regression analyses were conducted to examine the characteristics of unpaid carers, association between caregiver status and psychological wellbeing, and caregiver-specific factors associated with risk of poor psychological wellbeing. Approximately 15% (n = 417) of the sample reported providing unpaid care. Younger age, having three or more children in the household, and lower income were identified as significant correlates of caregiver status. Unpaid caregivers were at increased risk of depression or anxiety and mental health help-seeking. Unpaid caregivers who were younger, lived in households with one or two children, and had a lower income were at greater risk of depression or anxiety and engaging in mental health help-seeking. Caring for an individual with a terminal illness, long-term illness, learning disability or difficulty, mental health problems, physical disability, and other were linked to increased risk of depression or anxiety, while caring for someone with a learning disability increased risk of mental health help-seeking. This study indicates that at least one in eight people in the UK provide unpaid care, and that those who provide unpaid care have a far higher risk of experiencing depression or anxiety and seeking mental health treatment. The identification of risk factors associated with these mental health outcomes will facilitate the identification of those in most need of support.

A narrative review of community wellbeing programmes and the reported outcomes for young carers

Wellbeing programmes have the potential to support young carers in their formative years. However, there is a scarcity of research into wellbeing programmes for young carers and their associated outcomes. This review aims to identify targeted community programmes that support the mental health and social wellbeing of young carers and their outcomes through the academic literature. An initial search of databases retrieved 335 articles, with ten meeting the inclusion criteria. Findings were organised thematically according to the programme outcomes: improvement in emotional wellbeing and quality of life; the development of new skills; respite from caring; and social connectedness and peer support.

Implementing Arts on Prescription at Home for People Living With Dementia: A Hybrid-Effectiveness Feasibility Study.

Arts on prescription at home (AoP@Home) is a participatory art-based approach involving a professional artist engaging a person with dementia (and their family carer) in art-making in their own home. This study evaluated the implementation of AoP@Home within a real-world community aged care context. A hybrid effectiveness-implementation design was used to simultaneously test both the AoP@Home intervention and the implementation process. AoP@Home program outcomes included person with dementia and family carer (dyad) health and wellbeing, and personal goal attainment. Implementation outcomes were evaluated according to feasibility, fidelity, acceptability, uptake, and costs via routinely collected data, artist notes, and interviews with program managers, artists, and participant dyads. Four dyads completed an AoP@Home program during the study period. All participants with dementia reported improvements in their overall health and wellbeing, and wellbeing scores improved for all carers from baseline to post-program. Implementation was feasible using existing government funding mechanisms, and programs were acceptable to all stakeholders. It is possible to deliver participatory arts programs for community-dwelling people with dementia and their family, in their home, using sustainable and available funding models. Programs such as AoP@Home should be made more accessible alongside broader allied health and care services.

Exploring the Support Needs of Chinese Family Carers of People Living with Dementia in New Zealand during the COVID-19 Pandemic: A Resilience Resources Framework Perspective.

Caring for people living with dementia during the novel coronavirus disease 2019 (COVID-19) pandemic significantly impacted the emotional, physical, and social well-being of carers. However, no study has focused on the well-being of Chinese carers of people living with dementia in New Zealand during the pandemic. This study aimed to explore the support needs of Chinese carers of people living with dementia in New Zealand during the COVID-19 pandemic. Semi-structured interviews were conducted by two bilingual and bicultural researchers. Thematic analysis was used to explore the resilience resources for Chinese carers. Twelve Chinese carers were recruited from four community organizations in New Zealand. Four themes were identified: (1) social isolation, (2) emotional loneliness, (3) ambivalent feelings of being a carer, and (4) a variety of unmet needs. The findings of our study provide new insights into the multiple support needs of Chinese carers of people living with dementia during the COVID-19 pandemic. Implications for practice include the establishment of culturally appropriate care support services and the development of tailored resilience-building interventions to address the unmet needs of Chinese carers of people living with dementia.

Effectiveness of Online Programmes for Family Carers of People with Intellectual Disabilities: Systematic Review of the International Evidence Base.

This systematic literature review examines the evidence base on the effectiveness of online programmes on the mental health and well-being of family carers of people with intellectual disabilities. Databases (ERIC, Medline, PsycINFO and CINAHL) were searched for intervention studies that considered online interventions for family carers of people with intellectual disabilities. Data were extracted using standardised data extraction tools. Bias was assessed using the Cochrane risk of bias tool for randomised trials (RoB 2). Screening, extraction and assessment of bias were completed independently by two members of the research team. Given the low number of included studies and different outcomes assessed within them, it was not possible to conduct a meta-analysis; therefore, data are presented narratively. Two studies met the criteria to be included in the review. Both studies utilised a feasibility randomised controlled trial methodology. One study found a significant decrease in parental stress, while the other found a significant increase in psychological well-being. Caution must be taken in drawing firm conclusions, given the small sample sizes and low retention rates in both studies. Online programmes seem to offer potential benefits to family carers of people with intellectual disabilities. However, further investigation is needed to examine these programmes, adopting a collaborative approach with family carers.

Double-Duty Carers' Health and Wellbeing during COVID-19: Exploring the Role of Mobility of the Care Economy in Southern Ontario, Canada.

Double-Duty Carers (DDCs) refer to people who work in the healthcare industry while also providing unpaid care to relatives, friends, or neighbours. The expectations placed on DDCs is expected to grow, and these employees already experience a high caring burden. As such it is important to understand how best to support their health and wellbeing. This paper explores DDCs' wellbeing during the COVID-19 pandemic, focusing an understudied factor: their mobility constraints. Following the Mobility of the Care Economy framework and a qualitative research design, it does so through a thematic analysis of 16 semi-structured interviews with female DDCs in Southern Ontario, Canada. Once data saturation was reached, three mobility pathways during the pandemic were identified, all of which negatively affected DDCs wellbeing. First, some COVID-19 policies (e.g., testing requirements) resulted in increased mobility demands and increased spatiotemporal constraints. Second, the closure of institutions that care for dependents (schools, daycares, day centres) resulted in forced reduced mobility, which increased financial stress. Finally, indirect mobility effects were identified: the reduced mobility of other informal carers increased the workload and emotional strain on DDCs. The paper concludes with a discussion of mobility-related policies that could improve DDC wellbeing.

Identifying the active content of interventions targeting the psychological well-being of carers of people with motor neuron disease: A systematic review.

The primary aim of this research was to use a taxonomy of behavior change techniques (BCTTv1) to identify, map, and describe the active components of intervention and comparator groups in studies evaluating the psychological well-being (PWB) of motor neuron disease (MND) carers. Secondary aims were to (a) identify absent active ingredients and (b) explore whether variability in the effectiveness of interventions targeting the PWB of MND carers could be better explained through improved characterization of the active content of these interventions. Mixed-methods systematic review based on Joanna Briggs Institute methodology for quantitative, qualitative, and mixed-methods reviews and Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Content-coding of interventions targeting the PWB of MND carers using BCTTv1 was conducted. Sixteen manuscripts describing 14 studies were included. Forty-one of the possible 93 behavior change techniques (BCTs, 44%) were identified as active ingredients, while 52 BCTs (56%) were absent. BCTs were identified in all 14 intervention groups and 4 control groups. Four of the 16 overall BCTTv1 categories were absent. Eleven of the 14 studies demonstrated PWB benefits from their interventions. Identified and absent BCTs and BCTTv1 categories were mapped for all study groups, enabling a transparent characterization of active intervention content associated with positive PWB outcomes. Directions to improve interventions in this nascent field of research included the investigation of relevant untested BCTs in this population and the management of reporting and methodological quality issues.

Implementation of guidelines on Family Involvement for persons with Psychotic disorders: a pragmatic cluster randomized trial. Effect on relatives’ outcomes and family interventions received

BackgroundFamily interventions (FI) are recommended as part of the treatment for psychotic disorders, but the implementation in mental health services is generally poor. Recently, The Implementation of guidelines on Family Involvement for persons with Psychotic disorders (IFIP) trial, demonstrated significant improvements in implementation outcomes at cluster-level. This sub-study aims to examine the effectiveness of the IFIP intervention on relatives’ outcomes and received FI.MethodsA cluster randomized controlled trial, was conducted in 15 Norwegian Community Mental Health Center (CMHC) units that were randomized to either the IFIP intervention, including implementation interventions and clinical interventions, or treatment as usual (TAU). The clinical interventions consisted of FI: basic family involvement and support (BFIS) to all patients and family psychoeducation (FPE) to as many as possible. Patients with psychotic disorders and their closest relative were invited to fill in questionnaires at inclusion and 6 months and 12 months follow-up. Received FI was reported by both relatives and clinicians. The relatives’ primary outcome was satisfaction with health service support, measured by the Carer well-being and support questionnaire part B (CWS-B). The relatives’ secondary outcomes were caregiver experiences, expressed emotions and quality of life. Patients’ outcomes will be reported elsewhere.ResultsIn total 231 patient/relative pairs from the CMHC units were included (135 intervention; 96 control).The relatives in the intervention arm received an increased level of BFIS (p=.007) and FPE (p < 0.05) compared to the relatives in the control arm, including involvement in crisis planning. The primary outcome for relatives’ satisfaction with health service support, showed a non-significant improvement (Cohen’s d = 0.22, p = 0.08). Relatives experienced a significant reduced level of patient dependency (Cohen’s d = -0.23, p = 0.03).ConclusionThe increased support from clinicians throughout FI reduced the relatives’ perceived level of patient dependency, and may have relieved the experience of responsibility and caregiver burden. The COVID-19 pandemic and the complex and pioneering study design have weakened the effectiveness of the IFIP intervention, underscoring possible potentials for further improvement in relatives’ outcomes.Clinical Trial RegistrationClinicalTrials.gov, identifier NCT03869177.

Soothing dementia carers: A pilot evaluation of an imagery-based wellbeing app feature to support family carers of people with dementia during the COVID-19 pandemic

Background The COVID-19 pandemic has presented unprecedented risks to the health of people living with dementia. Confinement to their homes and extra pressure on the health and social care system, left people with dementia and their carers with reduced access to care services. Accordingly, family carers assumed more caring responsibilities and faced a greater risk of social isolation and loneliness, negatively affecting their mental wellbeing. In response, we developed a new imagery-based feature called Project Soothe within an existing app, CogniCare, which aimed to support the wellbeing of family carers looking after someone with dementia at home. Methods This new feature aimed to test the utility of our previous research which has shown that viewing soothing images has positive mood benefits on users. In this pilot, we examined the usage of the Project Soothe feature over a one-year period. Results Our results indicate the feasibility of the imagery-based app feature as we found that most users found viewing the soothing images to have a positive influence on their mood. Conclusions This finding illustrates feasibility of this imagery-based wellbeing app in this population of interest, and suggests that, upon further replication and research, the Project Soothe feature within the CogniCare app has potential to be developed as a digital wellbeing tool for family carers of people with dementia.

Moving forward with dementia: an explorative cross-country qualitative study into post-diagnostic experiences

Objectives This explorative cross-country qualitative study aims to describe experiences of receiving a dementia diagnosis and experiences of support following a diagnosis in Australia, Canada, the Netherlands and Poland. Method Qualitative study using projective techniques during online focus groups, online and telephone interviews with people with dementia and caregivers. Results Twenty-three people with dementia and 53 caregivers participated. Qualitative content analysis revealed five themes; (1) ‘Coming to terms with dementia’ helped people deal with complex emotions to move forward. (3) ‘The social network as a source of support’ and (4) ‘The challenges and realities of formal support’ and impacted ‘Coming to terms with dementia’. (2) ‘Navigating life with dementia as a caregiver’ highlights caregiver burden and was impacted by (4) ‘The challenges and realities of formal support’. People were (5) ‘Self-caring and preparing for tomorrow’ as they focused on maintaining current health whilst planning the future. Despite differences in healthcare and post-diagnostic support systems, there were more similarities across countries than differences. Conclusion Across countries, formal support and support from friends and family are crucial for people with dementia and caregivers to come to terms with dementia and maintain carer wellbeing to ultimately live well with dementia.

Community Preferences for the Care of Older People at the End of Life: How Important is the Disease Context?

Population preferences for care at the end of life can inform palliative care policy and direction. Research investigating preferences for care at the end of life has focused predominantly on the context of advanced cancer, with relatively little attention to other life-limiting illnesses that are common causes of death. We aimed to investigate preferences for the care of older people at the end of life in three different disease contexts. The purpose was to understand if population preferences for care in the last 3 weeks of life would differ for patients dying from cancer, heart failure or dementia. Three discrete choice experiments were conducted in Australia with a general population sample using similar methods but different end-of-life disease contexts. Some attributes were common across the three experiments and others differed to accommodate the specific disease context. Each survey was completed by a different panel sample aged ≥45years (cancer, n=1548; dementia, n=1549; heart failure, n=1003). Analysis was by separate mixed logit models. The most important attributes across all three surveys were costs to the patient and family, patient symptoms and informal carer stress. The probability of choosing an alternative was lowest (0.18-0.29) when any one of these attributes was at the least favourable level, holding other attributes constant across alternatives. The cancer survey explored symptoms more specifically and found patient anxiety with a higher relative importance score than the symptom attribute of pain. Dementia was the only context where most respondents preferred to not have a medical intervention to prolong life; the probability of choosing an alternative with a feeding tube was 0.40 (95% confidence interval 0.36-0.43). This study suggests a need for affordable services that focus on improving patient and carer well-being irrespective of the location of care, and this message is consistent across different disease contexts, including cancer, heart failure and dementia. It also suggests some different considerations in the context of people dying from dementia where medical intervention to prolong life was less desirable.

Experiences of Mental Health Carers Examined Using a Recovery Framework

ABSTRACT Carers are a crucial support in the recovery of people with mental illness in the community. As they are often severely affected by the impact of mental illness of the person they care for, carers need to recover from the impact alongside the care recipient. While mental health services focus on the recovery of people with mental illness, carers’ recovery is largely neglected. Using the CHIME (Connectedness, Hope and optimism about the future, Identity, Meaning in life and Empowerment) recovery framework, the authors of this study aimed to examine carers’ experiences and what they needed in their own recovery. A mixed methods approach was used to analyse the responses of 1,918 carers who completed the Australian 2020 National Carer Survey. Thematic analysis was used to identify themes regarding carers’ experiences against the elements of CHIME. Quantitative findings regarding subjective wellbeing and perception of support were used to complement the themes. Themes aligned with CHIME but indicated poor recovery. Recognition (R) was found to be an important recovery factor for carers. Without adequately addressing the needs and wellbeing of carers and giving due recognition for their contribution, carers have difficulty progressing in their own recovery. CHIME-R may be appropriate as a recovery framework for carers. IMPLICATIONS Caregiving needs and recovery of Australian mental health carers are largely neglected by mental health services and government departments. Recognition of carers should be taken into consideration as an important factor in carers’ recovery. Mental health and social services need to critically consider how they can promote family recovery, rather than focusing on the personal recovery of service users only.