Well-being Of Family Caregivers Research Articles

Financial strain, health behaviors, and psychological well-being of family caregivers of older adults during the COVID-19 pandemic

ObjectivesThis study aims to examine the change in financial strain, health behaviors, and psychological well-being of family caregivers of older adults during the COVID-19 pandemic and explore the differences in mental health outcomes by gender, race, and relationship status. MethodsUsing the 2020 National Health and Aging Trends Study COVID-19 supplement, our sample included 2026 family caregivers of older adults. Structural equation modeling was conducted. ResultsCaregivers with financial strain showed worse mental health than those with no financial strain. Female or adult children caregivers reported significantly less time walking, more financial strain, and a higher level of negative mental health outcomes compared to male or spouse caregivers; non-White caregivers reported greater positive mental health outcomes compared to White caregivers during the pandemic. DiscussionHealth professionals should consider the financial and mental health impact of COVID-19 among family caregivers when designing and delivering caregiver support programs. InnovationThis study provides nationally representative estimates of several important health behaviors and health outcomes for caregivers of older adults during and after the COVID-19 pandemic, helping to fill the knowledge gap about the characteristics of caregivers whose health and well-being were most affected by the pandemic.

Family caregiver outcomes after participating in a Hospital-based family involvement program after major gastrointestinal surgery: a subgroup analysis of a patient preferred cohort study

Background: Engaging families in postsurgical care is potentially beneficial for improving cancer patient outcomes and quality of care. We developed a family involvement program (FIP) and in this study, we aim to evaluate the impact of the FIP on family caregiver burden and well-being. Moreover, we aim to assess the fidelity of the program. Materials and methods: This is a preplanned subgroup analysis of a patient-preferred prospective cohort study that included family caregivers of patients who underwent major oncological surgery for gastrointestinal tumors. Only patient-nominated family caregivers could participate in the FIP. Caregivers received structured training in fundamental caregiving tasks from healthcare professionals and then actively participated in these tasks. Caregiver burden and wellbeing were measured four times (at hospital admission, at hospital discharge, and at one and three months post-hospital discharge) using the Caregiver Strain Index+ (CSI+) and the Care-related Quality of Life instrument (CarerQoL-7D). The fidelity of the FIP was assessed by recording completion of care activities. In addition, family caregivers were asked whether they would participate in the FIP again. Results: Most of the 152 family caregivers were female (77.6%), and their mean age was 61.3 years (SD=11.6). Median CSI+ scores ranged between -1 and 0 and remained below the cutoff point of experiencing burden. CarerQoL-7D results indicated no significant differences in family caregivers’ well-being over time. Upon discharge, over 75% of the family caregivers stated that they would recommend the FIP to others. The highest compliance with all fundamental care activities was observed during postoperative days 2 to 4. Conclusion: The family caregivers of oncological surgical patients who participated in the FIP exhibited acceptable levels of caregiver burden and well-being. These findings suggest that the FIP is a valuable intervention to equip family caregivers with the skills to navigate the uncertain period following a patient’s hospital discharge.

Self-Reported Well-Being of Family Caregivers of Children with Medical Complexity

ObjectiveProvide an in-depth and psychometrically rigorous profile of the emotional well-being and sleep-related health of family caregivers of children with medical complexity (CMC). MethodsCross-sectional survey study of family caregivers of CMC receiving care from a pediatric complex care center between May 2021 and March 2022. Patient Reported Outcomes Measurement Information System Short-Forms (PROMIS-SF) assessed global mental health, emotional distress (anxiety, depression, anger), psychological strengths (self-efficacy, emotional regulation, meaning and purpose), and sleep-related health (fatigue, sleep-related impairment). Student’s t-tests compared the sample’s mean T-scores to US population norms. Pearson’s correlation coefficient (ρ) examined associations between measures of psychological strengths and emotional distress. Unadjusted linear regression analyses explored relationships between well-being outcomes and child and caregiver characteristics. ResultsCompared to US population norms, caregivers of CMC (n = 143) reported significantly lower global mental health and emotional regulation ability as well as elevated symptoms of anxiety, depression, anger, fatigue, and sleep-related impairment (all P < .01). Whereas participants reported a significantly higher sense of meaning and purpose (P < .05), levels of self-efficacy were not significantly different from population norms. We observed moderate-to-strong inverse relationships between psychological strengths and emotional distress (ρ range, −0.39 to −0.69); with the strongest inverse associations found between emotional regulation ability and emotional distress. In exploratory analyses, caregiver race and ethnicity, socioeconomic status, and child health insurance type were significantly associated with caregiver well-being. ConclusionFamily caregivers of CMC report poor well-being, most notably, increased symptoms of anxiety and reduced global mental health and sleep-related health.

I-Poems: A Window Into the Personal Experiences of Family Caregivers of People Living With Advanced Cancer.

To date, there is little understanding of how caring during advanced cancer can be a transformational experience for personal becoming for family caregivers (FCGs). FCGs experience personal becoming as they create their own meaning of health and illness and choose patterns relating to the self-identity of the past while reaching forward into the unknowns. Gaining greater insight into a potentially positive aspect of cancer caregiving can contribute to family caregiver well-being and quality of life. This paper identifies I-Poems within cancer caregiver narratives and explores them for themes of personal becoming. The narrative environment created space for FCGs to construct and share their voices; at the same time, the analytic method of poetic inquiry provided the voice of the FCGs to be seen, heard, and contextually explored. As a secondary analysis, we used five cancer caregiver narrative texts obtained from the primary study to create individual I-Poems. Each of the I-statements within the cancer caregiver narrative texts was lifted and repositioned into a poem format while retaining the chronological order and voice of the participant. We then explored the I-Poems for converging themes of personal becoming as emerged from the primary narrative-thematic analysis. I-Poems were created from each of the five participants caregivers' narratives and then explored for themes of personal becoming. Each of the participant stories is briefly introduced, followed by their I-Poem. We found that the I-Poems converged with emergent themes and provided a first-person representation of their caring journey and transformation of being. I-Poems are a postmodern form of poetic inquiry that can be used alongside thematic analysis to explore personal meaning of caring for someone with advanced cancer and how FCGs experience personal transformation of self. While we found I-Poems to be a meaningful and useful form of analysis for some narrative data, we propose an evolved genre of poetic inquiry-We-Poems-to be used in dyadic nursing research and with FCGs who are in partnered relationships.

The Effect of a Mindful Self-Compassion Intervention on Burden, Express Emotion and Mental Well-Being in Family Caregivers of Patients with Schizophrenia: A Randomized Controlled Trial.

The objective of this randomized controlled trial was to examine the impact of a mindful self-compassion intervention on burden, express emotion, and mental well-being in family caregivers of patients with schizophrenia. Standardized measures, including the ZARIT Caregiving Burden Scale, Expressed Emotion Scale and Warwick-Edinburgh Mental Well-Being Scale, were administered at baseline, post-intervention. Statistical analysis was conducted to assess differences between the two groups. Significant reductions in caregiver burden, expressed emotion, and enhanced mental well-being in the intervention group compared to the control group at post-intervention. The results of this randomized controlled trial indicate that the mindful self-compassion intervention significantly reduces caregiver burden, expressed emotion, and improves mental well-being in family caregivers of patients with schizophrenia. These findings underscore the potential utility of mindful self-compassion interventions as effective support for this population, highlighting the importance of integrating such interventions into caregiver support programs.

PROFILE OF CAREGIVING ACTIVITIES AND ASSOCIATION WITH PHYSICAL HEALTH AMONG DEMENTIA SPOUSAL CAREGIVERS

Abstract The daily care of a person living with Alzheimer’s disease and related dementia (ADRD) is associated with threats to the health and well-being of family caregivers. Although more is known about the relationship between caregiving and psychosocial distress, far less is known about the relationship between caregiving and physical health and health behaviors. This study aims to identify intensity of caregiving experience profiles and compare the profiles to multidimensional physical health indicators and health behaviors among spousal caregivers for persons with ADRD. Using data from 152 spousal caregivers aged 65 and over, the intensity of caregiving experience (ICE) was measured as the number and frequency of health- and medical-related helping activities for his/her care recipient. Multidimensional health indicators included fatigue, sleep disturbance, physical functioning, pain interference, and general health from self-reports, and the number of chronic conditions from the electronic health records. Health promotion behaviors were assessed as: health responsibility, physical activity, nutrition, interpersonal relations, and stress management. Cluster analysis was performed to determine the number of ICE profiles. T-tests and chi2 tests were to assess differences in health indicators and behaviors between clusters. We identified two distinct caregiving experience patterns: high-intensity (37.5%) and low-intensity (62.5%) caregiving. Caregivers from the high-intensity caregiving cluster reported feeling more tired (t=2.254, p&amp;lt; .05), perceiving more sleep disturbance (t=3.06, p&amp;lt; .001), and performing less physical activity (t=2.05, p&amp;lt; .05). Future studies are needed to develop effective interventions to reduce sleep disturbance and fatigue among family caregivers who are heavily involved in caregiving activities.

SOCIAL NETWORK STRUCTURE AND THE WELL-BEING OF FAMILY CAREGIVERS TO OLDER ADULTS

Abstract Personal networks provide social support to both older adults and the family members who care for them, yet we know very little about the different structures of caregiver networks and which are most protective of caregiver well-being. Using a new nationally representative survey of 2,176 individuals who report providing care to a family member or friend age 50 or older with a health condition during the height of the Covid-19 pandemic and give detailed information on their personal networks, we examine caregivers’ networks in terms of size, density, proportion kin, and how care is allocated among network members. We also examine the implications of network structure for caregiver well-being including anxiety, depression, and hopefulness. We use latent profile analysis to identify three classes of caregiving networks: (1) Large, sparse networks with relatively few kin and only some people assisting with caregiving tasks for care recipients; (2) Moderately-sized, somewhat dense, kin-based networks; (3) Small, very dense kin networks where caregiving is shared across network members. Caregivers who are male, highly-educated, and providing care for someone with dementia are disproportionately in Class 1. Being in Class 3 is significantly associated with lower caregiver anxiety compared to being in the other two groups, even after controlling for sociodemographic factors, but not with depression and hopefulness. This work has implications for the optimal network structure for facilitating the well-being of family caregivers, and provides a baseline for examining network change and the implications thereof as the impact of the pandemic wanes.

Quality of life among family caregivers of cancer patients: an investigation of SF-36 domains

BackgroundWith improving survival rates, cancer has become more of a chronic disease with long-term palliative care requirements. Thus, it is even more than ever necessary to pay careful attention to the well-being of family caregivers of cancer patients, as cancer trajectory is a challenging path for both patients and their caregivers. This study focusses on ascertaining the level of quality of life (QoL) domains and their attributable significant factors among a population of cancer family caregivers.MethodsThis was a cross-sectional study. The study population consist of caregivers of adult cancer patients in Zanjan, Iran between 2019 and 2020. Medical Outcomes General Health Survey Short Form 36 (SF-36) was the instrument to measure outcome variables. Clinical and basic characteristics of the caregivers and their patients were also collected using a questionnaire designed for this purpose. Data were analyzed using Independent samples t-test, Analysis of Variance, and stepwise linear regression in SPSS v.26.ResultsOf the caregivers 167 were male and 133 were female. The mean age of the participants was 40.77 ± 12.56, most of whom were offspring of the patients (148, 49.3%), married (239, 79.7%), and self-employed (81, 27.0%). both domains of bodily pain (76.50 ± 16.67) and physical functioning (74.88 ± 20.27) showed the highest scores among caregivers. Age and gender of caregivers, duration of caregiving, Eastern Cooperative Oncology Group (ECOG) performance status scale as well as type and stage of cancer, and type of treatment were among the significant predictors of QoL domains (All, p < 0.001).ConclusionFindings of the present study substantiated various significant predictors for QoL along with low levels of QoL domains among the caregivers of cancer patients. Securing such findings proves the magnitude of probable unmet needs and psychological challenges in this population and provides the health policy makers with some valuable clues to draw effective strategies to address such issues.

Identifying Research Priorities to Promote the Well-Being of Family Caregivers of Canadians with Intellectual and/or Developmental Disabilities: A Pilot Delphi Study.

Current programming and resources aimed at supporting the well-being of family caregivers often fail to address considerations unique to those caring for people with intellectual and/or developmental disabilities (IDDs). As a result, many caregivers of people with IDD feel isolated, stressed, and burnt out. A targeted research agenda informed by key stakeholders is needed and would allow research teams to coordinate resources, talents, and efforts to progress family caregiver well-being research in this area quickly and effectively. To address this aim, this pilot study used a Delphi design based on 2 rounds of questionnaires. In round 1, 19 stakeholders (18 females, 1 male), including 12 family caregivers, 3 rehabilitation providers, 2 researchers, and 2 organizational representatives, identified broad areas for caregiver well-being research. After collating the responses from round 1, stakeholders were asked to rank whether each area was considered a research priority in round 2. Data were analyzed using descriptive statistics and conventional content analysis. Eighteen stakeholders completed the round 2 survey (1 caregiver did not complete the round 2 survey), after which a consensus was reached. Stakeholders identified nine broad priorities, including system-level programs and services, models of care, health promotion, social inclusion, equity and diversity, capacity building, care planning along the lifespan, and balancing formal and natural community-based supports. Although preliminary in nature, the research priorities generated using an inclusive and systematic process may inform future efforts to promote the well-being of caregivers of Canadians with IDD.

Impact of childhood and adolescence cancer on family caregivers: a qualitative analysis of strains, resources and coping behaviours

BackgroundThe physical demands of caring for children and adolescents diagnosed with cancer, over a lengthy period, exert significant strain on the health and well-being of family caregivers. The capacity of family caregivers to surmount and cope with the various strains they experience due to the diagnosis and treatment trajectory is essential to the quality of life of the child and adolescent who has been diagnosed with cancer. However, the experiences of family caregivers have been under-explored. This study explored the strains, resources, and coping strategies of family caregivers of children and adolescents diagnosed with cancer in Ghana.MethodsGuided by a descriptive phenomenological design, 20 semi-structured interviews with family caregivers were conducted at a tertiary health facility that provides paediatric oncology services. The study was conducted between June and October 2022. The interviews were transcribed verbatim, translated and coded using NVivo software. An inductive thematic analysis approach using Vaismoradi et al.’s thematic analysis framework was followed in analysing the data.ResultsThe study revealed that family caregivers of children diagnosed with cancer experienced three main strains: somatic strains (poor sleep quality, loss of appetite, and unintended weight loss), economic strains (financial burden and loss of economic livelihood), and psychosocial strains (isolation from social activities and network, frustration and helplessness, and balancing multiple family needs). The following themes emerged as coping resources: family cohesiveness, community support, and support from health care providers. Coping strategies that emerged included trusting in God and being self-motivated.ConclusionThe study concludes that family caregivers experience somatic, economic, and psychosocial strains. However, they can leverage available resources (family cohesiveness, community support, and support from healthcare providers) to cope with these strains. There is a need to educate and sensitize family caregivers about the potential strains that they are likely to experience prior to the assumption of care roles. Also, the formal inclusion of non-governmental organizations and religious bodies will ensure that family caregivers receive sufficient community support to cope with the strains of caregiving.

The Role of Social Isolation on Mediating Depression and Anxiety among Primary Family Caregivers of Older Adults: A Two-Wave Mediation Analysis

BackgroundPrimary family caregivers of older people with chronic care conditions are highly vulnerable to social isolation and psychological strains such as depression and anxiety due to their demanding responsibilities. This study examines how social isolation mediates the relationship between caregiving stress and mental health symptoms of primary family caregivers.MethodsThe analytic sample included 881 primary caregivers of older adults from the 2015 and 2017 National Study of Caregiving (NSOC). Social isolation was measured using a composite structure that includes objective social disconnectedness and subjective loneliness. Two-wave mediation models were estimated to examine longitudinally if social isolation mediated the relationship between caregiving stress (subjective & objective stress) and mental health symptoms (depression & anxiety) of primary caregivers.ResultsThe study findings indicate that both subjective (β = 0.32, p < 0.001) and objective stress (β = 0.21, p = 0.003) have direct effects on depression among primary caregivers. Social isolation was found to only mediate the relationship between objective stress and depression (β = 0.18, p < 0.001). In contrast, no significant direct and indirect pathway was found in the anxiety model.ConclusionsThe study demonstrates the internal mechanism where objective strains of caregiving make family caregivers socially isolated, which in turn leads to increased symptoms of depression. Future interventions and practices aimed at improving the psychological well-being of family caregivers should prioritize strategies aimed at increasing social engagement, particularly for those with heavy caregiver burdens.

Mental health and wellbeing in family caregivers of patients with schizophrenia disorder: a literature review

Mental health and wellbeing in family caregivers of patients with schizophrenia disorder: a literature review

Psychosocial experiences of caring by family caregivers of patients living with prostate cancer in a teaching hospital: A descriptive phenomenological study.

This study explored the psychosocial experience of caregiving on the family caregiver of patients with prostate cancer in the Cape Coast metropolis of Ghana. A descriptive phenomenological study was conducted through in-depth face-to-face semi-structured interviews. Twelve family caregivers of prostate cancer patients were selected through purposive sampling. Interviews were conducted until data saturation. All interviews were taped, transcribed verbatim and analysed thematically. The family caregiver's psychosocial experience associated with caregiving uncovered two significant themes with 13 sub-themes. 'Psychological impact' emerged as the first central theme, with anxiety, care as an obligation and feelings of inadequacy, hopelessness, uncertainty, denial and concealment as the sub-themes. The second central theme was 'Social impact' with sexual concerns, role adjustment, loss of livelihood, turmoil and reduced leisure activities emerging as sub-themes. The findings demonstrated that caring significantly impacts the psychological and social well-being of the caregivers of prostate cancer patients. Therefore, there is a need for holistic assessment to include the psychosocial well-being of family caregivers to improve quality of life. Therefore, psychiatric nurses support family caregivers through education and psychosocial interventions to improve their quality of life and enable them to care for their loved ones more effectively.

Family care during the first COVID-19 lockdown in Germany: longitudinal evidence on consequences for the well-being of caregivers

We examine changes in the well-being of family caregivers during the early phase of the COVID-19 pandemic in Germany, using data from the German Socio-Economic Panel (SOEP) and the SOEP-CoV study. The COVID-19 pandemic posed an extraordinary challenge for family caregivers, as care recipients are a high-risk group requiring special protection, and professional care services were severely cut back. The specific situation of the COVID-19 pandemic allows us to re-examine the caregiver stress process model. Using first difference regression models, we analyse changes in general life satisfaction and depressive symptoms (PHQ-4 score) among family caregivers between 2019 and spring 2020, differentiating by care intensity and duration of the care episode. Caregivers show similar changes in well-being as non-caregivers: a simultaneous increase in depressive symptoms and life satisfaction between 2019 and 2020. However, our results reveal heterogeneity within the group of family caregivers as we find differences according to caregiving dynamics and intensity. Among the group of continuing caregivers, high-intensity caregivers experience a larger increase in life satisfaction, and low-intensity caregivers a smaller increase in life satisfaction, compared to non-caregivers. Our results therefore provide some support for the role enhancement hypothesis for continuing caregivers with high time commitment.

Supportive interventions for family caregivers of patients with advanced cancer: A systematic review.

Family caregivers are often intensively involved in palliative and end-of-life cancer care. A variety of interventions to support family caregivers have been developed, differing in target population, modality, and components. We aimed to systematically examine characteristics and the effectiveness of interventions to support family caregivers of patients with advanced cancer. A systematic review was conducted using Embase, Medline Ovid, Web of Science, Cochrane, Google Scholar, and Cinahl. This review included quantitative studies published from January 2004 until January 2020 reporting on interventions to support family caregivers of patients with advanced cancer in all care settings. Out of 7957 titles, 32 studies were included. Twenty-two studies were randomized controlled trials. Interventions were delivered to four target populations: individual family caregivers (n=15), family caregiver-patient dyads (n=11), families (n=2) and peer groups (n=4). Most interventions (n=26) were delivered face-to-face or by phone, two were delivered online. Most interventions included multiple components and were primarily aimed at supporting family caregivers' self-care. Twenty-nine interventions were shown to have beneficial effects on family caregiver outcomes, mostly in the psycho-emotional (n=24), daily functioning (n=13) and social dimension (n=6). Individual interventions were mainly effective in the psycho-emotional dimension, dyad and family interventions in the psycho-emotional and social domain, and group interventions mainly had an effect on daily functioning. Interventions to support family caregivers in advanced cancer care vary widely. Most intervention studies reported beneficial effects for the wellbeing of family caregivers. There is evidence that the target group is associated with beneficial effects on different outcome dimensions.

Exploring the experience of family caregivers of children with medical complexity during COVID-19: a qualitative study

Background and objectivesChildren with medical complexity have been disproportionately impacted by the COVID-19 pandemic and the associated changes in healthcare delivery. The primary objective of this study was to gain a thorough understanding of the lived experiences of family caregivers of children with medical complexity during the pandemic.MethodsWe conducted semi-structured interviews with family caregivers of children with medical complexity from a tertiary pediatric hospital. Interview questions focused on the aspects of caregiving for children with medical complexity, impact on caregiver mental and physical well-being, changes to daily life secondary to the pandemic, and experiences receiving care in the healthcare system. Interviews were conducted until thematic saturation was achieved. Interviews were audio recorded, deidentified, transcribed verbatim, coded and analyzed using content analysis.ResultsTwelve semi-structured interviews were conducted. The interviews revealed three major themes and several associated subthemes: (1) experiences with the healthcare system amid the pandemic (lack of access to healthcare services and increased hospital restrictions, negative clinical interactions and communication breakdowns, virtual care use); (2) common challenges during the pandemic (financial strain, balancing multiple roles, inadequate homecare nursing); and (3) the pandemic’s impact on family caregiver well-being (mental toll, physical toll).ConclusionsFamily caregivers of children with medical complexity experienced mental and physical burden due to the intense nature of their caregiving responsibilities that were exacerbated during the pandemic. Our results highlight key priorities for the development of effective interventions to support family caregivers and their children.

Physical and social wellbeing of family caregivers of persons with hepatitis B associated chronic liver disease in Ghana: a qualitative study

BackgroundHepatitis B is one of the most common viral (HBV)infections that affect the liver. Infection with the virus may result in varying severity of liver disease which may be acute or chronic. Though most people recover from the infection, about 5 − 10% of cases lead to chronic infection. Persons who develop HBV-related debilitating liver disease will likely require informal care from family caregivers.AimThis study sought to explore the physical and social wellbeing of family caregivers of persons with hepatitis B-associated chronic liver disease in a tertiary hospital in the Central region of Ghana.MethodsThis study adopted an exploratory, descriptive qualitative research design. We used a purposive sampling technique and a semi-structured interview guide to interview eighteen participants. The Quality of Life (QoL) model applied to family caregivers underpinned the study and guided the formulation of study objectives. Data analysis followed Braun and Clarke’s procedure for thematic content analysis. Similar codes were grouped into subthemes, and similar subthemes were grouped into major themes. The consolidated criteria for reporting qualitative research (coreq) checklist was used as a guide for writing the study.ResultsTwo major themes emerged from the study: physical wellbeing and social wellbeing. Seven subthemes were also identified: physical body changes and physiological body changes (physical wellbeing) and role strain, social isolation, financial impact, affection/sexual function, and support social wellbeing). These central themes aligned with two domains of the QoL model applied to family caregivers.ConclusionFamily caregivers of persons with HB-associated liver disease suffer ill health due to the burden of physical care for their sick relatives and neglect their health due to time constraints. They also experience role strain as they cannot attend to other family responsibilities and feel socially isolated since they spend all their time caring for a sick family member.

A Social Exergame Intervention to Promote Physical Activity, Social Support, and Well-Being in Family Caregivers.

Family caregivers often experience a high level of stress, social isolation, a sedentary lifestyle, and poor mental and physical health. An exergame intervention was developed to promote physical activity and well-being in family caregivers, and to test social support as a mechanism in behavior change. The current study was a randomized pilot trial (N=76) to compare the effectiveness of Go&Grow (social vs non-social exergame) to promote well-being through increased social support and physical activity for family caregivers over a 6-week intervention. The treatment group increased significantly more than the control group in well-being (management of distress) and social support (satisfaction with contact quality). Social support served as a mechanism (mediator and moderator): the treatment group increased more than the control group in satisfaction with social contact quality, which led to more positive affect and less loneliness. Moreover, those in the treatment group who increased more in overall social support and knowing others' experiences increased their steps more than those with less support, while change in steps for the control group was not related to support level. Those in the treatment group who used more social features of the app had a greater increase in steps compared to those who used it less. Social support in technology interventions is a promising direction to promote caregivers' well-being and physical activity. Social support served as a mechanism of behavior change which can inform more engaging, sustainable, portable, and scalable interventions in the future for sedentary and socially isolated family caregivers.

Digital peer-to-peer support programme for informal caregivers of people living with motor neuron disease: study protocol for a multi-centre parallel group, single-blinded (outcome assessor) randomised controlled superiority trial

BackgroundPeer support is effective in improving psychological well-being of family caregivers of people with conditions such as dementia, cancer, and brain injury. However, there are limited data on effective psychological interventions for family caregivers of people living with motor neurone disease. Our objective is to evaluate the efficacy of a virtual peer support programme for improving caregiver psychological wellbeing and caregiving related outcomes.MethodsWe will conduct a multi-centre parallel group randomised controlled superiority trial. Using a multi-modal recruitment strategy, we will recruit informal caregivers from UK MND clinics, in-patient units, and hospices. We will randomise (1:1, stratified by gender) participants to either a 12-week virtual peer support programme or usual care comprising provision of online information resources publicly available via the MND Association website. Peer support programme elements will be delivered via a secure digital e-platform aTouchAway™ (Aetonix, Canada). Our target sample size is 160 (80 each arm). Our primary outcome is the Hospital Anxiety and Depression Scale (HADS) assessed at 12 weeks (primary endpoint). Secondary outcomes that will also be assessed at 12 weeks include the Zarit Burden Interview, Pearlin Mastery Scale, Personal Gain Scale, Positive Affect Scale, and the Brief COPE. Outcome assessors will be blinded to allocation. Tertiary outcomes include perceived usability (1 item 9-point Likert scale) and acceptability (semi-structured qualitative interviews) of the peer support programme. Intervention fidelity measures will comprise frequency, type (text, audio, video), and duration (audio and video) of peer support contact downloaded from the aTouchAway AWS server. We will use a mixed-effects linear model to test the effect of the intervention on the primary outcome. Secondary outcomes will be analysed using linear regression. We have ethical approval (21/NW/0269) from the North-West Research Ethics Committee, UK.DiscussionThis single-blinded randomised controlled trial will determine the effect of a virtual peer support programme on caregiver psychological wellbeing and caregiver burden. This study will examine the impact of a virtual peer support intervention on quality-of-life measures in informal caregivers of individuals with MND living in the community.Trial registrationClinicalTrials.gov: NCT04695210

Moderating Effect of Work on Burden and Hospice Family Caregiver Well-Being.

Background: Hospice family caregiving is often physically and emotionally taxing, but it is unclear how employment status impacts hospice caregiver burden and well-being. Objective(s): To examine the relationship between caregiver burden and well-being, and the moderating role of employment status (i.e., working, not working). Design, Setting/Subjects: This was a secondary data analysis of baseline data from a longitudinal observational study of family caregivers of home hospice cancer patients in the United States. Descriptive statistics, correlations, hierarchical linear regressions, and moderation analyses were used. Measurements: Baseline data included demographics, preparedness for caregiving, perceived burden, and well-being (i.e., global health, positive affect and well-being, anxiety, depression). Results: The majority of the 90 participants were White (86.7%), married (71.1%), and college educated (85.6%). The mean age was 58.27 ± 14.22, 53.3% cared for a spouse, and 56.6% worked full or part time. After controlling for demographics, and using employment status as a moderator, greater caregiver burden was significantly associated with lower global health (β = -0.82 [-1.22 to -0.42], p < 0.001), positive affect and well-being scores (β = -0.69 [-1.03 to -0.36], p < 0.001), and higher depression (β = 0.24 [0.12-0.37], p < 0.001) and anxiety scores (β = 0.22 [0.07-0.37], p < 0.005). Employment status significantly moderated the relationship between burden and global health (β = 0.65 [0.22 to 1.08], p < 0.005), and burden and positive affect and well-being (β = 0.45 [0.06 to 0.84], p < 0.05). At high levels of burden, workers had greater well-being than nonworkers. Conclusion(s): More burdened hospice caregivers may experience worse well-being, especially among nonworking caregivers. Employment may be a protective factor for highly burdened hospice family caregivers.