Experiences Of Family Carers Research Articles

Experiences of family carers supporting older people within the last year of life in rural and remote areas in the UK.

In the UK, a large proportion of older adults live in rural/remote locations. More people are dying at home and require care from their families. Little is known about the experiences of family carers of older people in rural/remote areas in the last year of life. To explore the experiences of current and bereaved family carers who support/ed an older person in a rural area in the UK towards the end-of-life. Qualitative methodology using semi-structured interviews and reflexive thematic analysis methods. Interviews were conducted with family carers of rural/remote-dwelling older people in the last year of life. Participants were recruited through national support services, third sector organisations and social media. Interviews were conducted with 20 family carers. Most were female (n = 17) and aged 52-80years. Family carers experienced difficulties in accessing health and social care in rural/remote areas due to workforce and skills shortages within their regions. The wider community helped with practical tasks and made carers feel less alone. Community-based services, such as day care, helped to provide respite for carers and promoted meaningful activity and social inclusion for older people. Although internet access was problematic, family carers gained support remotely via social media and telehealth services. Family carers of older people in the last year of life in rural/remote areas value support from the wider community. Further work is required to understand how Public Health approaches to palliative care and workforce distribution can support rural/remote carers and older people.

Experiences of family carers in providing care to children with intellectual disabilities in India: A qualitative evidence synthesis.

India has a significant prevalence of people with intellectual disabilities. Despite their higher prevalence, they receive poor support. Therefore, this review aims to explore the experiences of family carers in providing care for children with intellectual disabilities in India. A qualitative evidence synthesis was undertaken, searching databases such as MEDLINE, CINAHL, Web of Science, and PsycInfo up to October 2023. Grey literature was also searched for unpublished studies, with two reviewers assessing methodological quality. Eleven eligible studies, mostly qualitative in design, were included in the review. The data synthesis followed a thematic approach. The synthesis found five themes representing family carers' experiences and perspectives. These were 'resilience and acceptance', 'parental response', 'care dynamic', 'preparing for transition to adulthood' and 'parental advocacy'. Family carers hold diverse views, while almost all consider providing care complex and challenging, with few positive experiences.

Qualitative Protocol of Chinese Parents and Siblings Experiences of Managing Challenging Behaviours of Adult Persons with Intellectual Disability in Hong Kong and Northern China.

While the literature has highlighted the immense challenges in caring for family members, it is still unclear what the needs of family carers of persons with intellectual disability and challenging behaviours are and what has worked for them. This study aims to examine 60 parents' and siblings' experiences in managing the challenging behaviours of their adult family member with intellectual disability whilst living at home. A qualitative grounded theory approach using semi-structured interviews will be adopted. Purposive sampling will be used to recruit family carers who live with adult persons with intellectual disability and use one community service in Hong Kong. Three special schools for persons with intellectual disability from northern China will be approached. This study will aim to provide an in-depth understanding of the experiences of family carers and compare the different circumstances they face when managing the challenging behaviours of their adult relatives with intellectual disability in their family home. Although this study targets adults with intellectual disability, the findings will provide a point of reference for adolescents and younger persons who exhibit demanding and challenging behaviours and live with their families. Recommendations can guide the development of appropriate strategies to strengthen services for family carers.

The influence of religion on the care experiences of family carers of older migrants with dementia in Belgian cities

ABSTRACT The number of older migrants with dementia in Western European cities is growing, and so is the share of their family caregivers. This study explores the influence of religion on the caregiving experiences of family caregivers responsible for older labour migrants residing in Belgian cities. In-depth interviews were conducted with 34 family caregivers of older migrants of Moroccan, Turkish, and Italian descent with dementia. Our findings underscore the significance of religion in four key dimensions: (i) as a co-definer of the meaning of dementia, (ii) as a way to deal with dementia and care burden, (iii) as an influencer of family care motives, and (iv) that more religious sensitivity is needed in professional dementia care, especially for Muslims. The discussion advocates for recognising religion as an integral aspect of the multifaceted identity of older migrants. Incorporating religious sensitivity offers a promising pathway toward more comprehensive intersectional-person-centred dementia care.

Experiences of UK and Irish family carers of people with profound and multiple intellectual disabilities during the COVID-19 pandemic

BackgroundPeople with profound and multiple intellectual disabilities (PMID) have high and intensive support needs that ordinarily place significant strain on family carers. This was further heightened by the removal of many external supports during the COVID-19 pandemic. We sought to explore the experiences of family carers of people with PMID during the COVID-19 pandemic and understand what the longer-term impact might be on their lives.MethodsFocus group interviews (n = 32) were conducted with family carers (n = 126) from the four countries of the UK and the Republic of Ireland. Participants were asked questions relating to their experiences of the COVID-19 pandemic, coping strategies, and challenges faced. All focus groups were conducted using the online platform, Zoom. These were audio recorded, transcribed verbatim and analysed employing inductive thematic analysis.FindingsThree main themes were generated from the data including (1.0) COVID-19 as a double-edged sword (2.0), The struggle for support (3.0), Constant nature of caring. These included 11 subthemes. (1.1) ‘COVID-19 as a catalyst for change’, (1.2) ‘Challenges during COVID-19: dealing with change’, (1.3) ‘Challenges during COVID-19: fear of COVID-19’, (1.4); ‘The online environment: the new normal’ (2.1) ‘Invisibility of male carers’, (2.2) ‘Carers supporting carers’, (2.3) ‘The only service you get is lip service: non-existent services’, (2.4); ‘Knowing your rights’ (3.1) ‘Emotional response to the caring role: Feeling devalued’, (3.2) ‘Emotional response to the caring role: Desperation of caring’, (3.3) ‘Multiple demands of the caring role.’ConclusionsThe COVID-19 pandemic presented immense challenges to family carers of people with PMID but also provided some opportunities. Families had already struggled to receive many of the supports and services to which they were entitled to only to have these removed at the onset of the pandemic. The experiences of male carers have been largely absent from the literature with this research showing they want to be included in decision making and require tailored support services. Service providers should see the end of the COVID-19 pandemic as providing opportunity to re-examine current provision and design services with family carers. As the direct threat from COVID-19 diminishes and the experiences of those who lived through this period come to the fore, there is a need to re-examine current models and provision of support to family carers to better meet their needs.

Navigating an emotional journey: A qualitative study of the emotional experiences of family carers currently supporting people living with motor neurone disease.

Family carers of people living with motor neurone disease (MND) face continuous changes and losses during the progression of the disease, impacting on their emotional wellbeing. Carers' emotions might affect their engagement in everyday activities and their caring role. However, how carers manage their emotions and which strategies they identify as useful to cope with them while caring is under researched. To identify the emotional experiences and coping strategies of MND family carers while caring the person living with MND. We conducted 14 semi-structured interviews with family carers currently supporting people living with MND living in the UK. Interviews were audio/video recorded and professionally transcribed verbatim. We analyzed data inductively within an interpretive descriptive approach, using reflexive thematic analysis. Three key themes were generated from the analysis. Destabilization of diagnosis reflected the devastating impact the diagnosis had on carers, characterized by initial overwhelming emotions. Adapting to new circumstances and identifying coping strategies captured how carers experienced everyday changes and losses and how they gradually adjusted to the situation by identifying coping strategies to be able to manage arising emotions. Maintaining emotional coping encompassed how carers used individual strategies they had tried before and had worked for them to cope emotionally with the continuous changes and losses while preserving their emotional wellbeing. Our findings suggest that carers of people living with MND embark on an emotional journey from the diagnosis of the disease. As the disease progresses, carers adopt coping strategies that best work for them to manage their emotions (e.g., living day by day and seeking support). Understanding the key strategies used to support emotional coping during the caring journey and how carers re-construct their emotional life around MND could help inform future practice and research to better support carers of this population.

Family carer experiences of hospice care at home: Qualitative findings from a mixed methods realist evaluation

Background: Hospice-at-home aims to enable patients approaching end-of-life to die at home and support their carers. A wide range of different service models exists but synthesised evidence on how best to support family carers to provide sustainable end-of-life care at home is limited. Aim: To explore what works best to promote family carers’ experiences of hospice-at-home. Design: Realist evaluation with mixed methods. This paper focuses on qualitative interviews with carers (to gain their perspective and as proxy for patients) and service providers from 12 case study sites in England. Interviews were coded and programme theories were refined by the research team including two public members. Setting/participants: Interviews with carers (involved daily) of patients admitted to hospice-at-home services (n = 58) and hospice-at-home staff (n = 78). Results: Post bereavement, 76.4% of carers thought that they had received as much help and support as they needed and most carers (75.8%) rated the help and support as excellent or outstanding. Of six final programme theories capturing key factors relevant to providing optimum services, those directly relevant to carer experiences were: integration and co-ordination of services; knowledge, skills and ethos of hospice staff; volunteer roles; support directed at the patient–carer dyad. Conclusions: Carers in hospice-at-home services identified care to be of a higher quality than generic community services. Hospice staff were perceived as having ‘time to care’, communicated well and were comfortable with dying and death. Hands-on care was particularly valued in the period close to death.

'It’s become a theatre’: relational experiences of family carers and people with Amyotrophic lateral sclerosis (ALS) after cognitive impairment emerges

Background: Amyotrophic lateral sclerosis (ALS) can lead to emotional and psychological distress between patients and their family carers. Many people with ALS develop cognitive impairment, which limits their ability to process complex information, interact, and communicate. This cognitive decline adds to caregiver burden. Few studies have explored interpersonal relations between people with ALS and their carers. Aim: To better understand how ALS-associated cognitive impairment influences close relations. Methods: Individual semi-structured in-depth, interviews were conducted once, with four patients and four family carers. Thematic analysis was used. Results: Increased distance of close relations was identified as the core theme. Differences and similarities within the data were identified according to the subthemes, (1) Everyday life together but apart: a demanding role to play, and (2) Coping with a lost future: living in the ‘normal’ present and searching for hope through a well-lived life. Conclusions and significance: Cognitive impairment following ALS can lead to increased relational distance between patients and their family carers. To ease their burden, professionals should recognize patients’ and carers’ relational issues and grief at an early stage. Focusing on their occupational identity and highly valued occupations that are still-accessible may help patients and carers regain meaning in everyday life.

Video Conferencing Peer Support and Rarer Forms of Dementia: An Exploration of Family Carers' Positive Experiences.

Little is known regarding the nuanced experiences of family carers for people living with rare dementias (PLWRD), with no known literature exploring their positive experiences of caring discussed within peer support group settings. This article explores family carers of PLWRD's positive experiences reported in video conferencing peer support groups. Six peer support group sessions involving a total of nine participants were qualitatively analysed using thematic analysis, guided by the conceptual framework of positive aspects of caring (CFPAC) (Carbonneau et al., 2010). Six themes were identified: (1) Protecting, maintaining, enjoying and finding strength in their relationship with the PLWRD; (2) Using tools and resources in response to challenges; (3) Positive impact of interactions and others' responses to the dementia; (4) Overcoming barriers to taking a break while maintaining their wellbeing, (5) Maintaining positive outlooks and showing psychological resilience in adversity; and (6) Attributing meaning to the caring role. This article highlights family carers of PLWRD's positive psychological, physical and social resources, balanced against the challenges of caring and maintaining their wellbeing, and identifies ways of promoting family carers' positive caring experiences and resources within healthcare and supportive settings.

Psychological experiences of family carers of people with spinal cord injury paraplegia: an explorative qualitative study

Spinal cord injury paraplegia is a significant health problem in Sri Lanka. This study explores the psychological experiences of family carers of people with such a condition. A descriptive phenomenological study was conducted with 17 parent, sibling, spouse and adult carers. Thematic analysis revealed four themes related to: carer emotions regarding the caring process; feelings related to the family member’s condition; beliefs beyond the physical world; and behaviour changes due to psychological distress. The findings will help develop interventions for the psychological needs of Sri Lankan carers and may provide insight into the experiences of similar Asian communities living globally.

Experiences of family carers of older people in marginalised communities in Namibia

Namibia’s lengthy colonial history and current high levels of inequality foreshadow care in the context of poverty and marginalisation, and within families that are diverse and whose care capacities are poorly understood. Focus group interviews with family carers of older people in two marginalised communities provide insights into their experiences of care. We highlight three findings: first, contexts of care perpetuate and entrench marginalisation; second, care is not widely shared within families, raising questions of what it means to ‘do family’; and, third, care has negative consequences for carers and their families, foreshadowing generational replication of carer exclusion.

‘The palliative care ambulance’: A qualitative study of patient and caregiver perspectives of an ambulance service

Background: The need for home-based palliative care is accelerating internationally. At the same time, health systems face increased complexity, funding constraints and global shortages in the healthcare workforce. As such, ambulance services are increasingly tasked with providing palliative care. Where paramedics with additional training in palliative care have been integrated into models of care, evaluations have been largely positive. Studies of patient and family carer experiences of paramedic involvement, however, are limited. Aim: To explore patient and family caregiver experiences of paramedics’ contribution to palliative care at home. Design: Qualitative interview study. We analysed data within a social constructionist epistemology using reflexive thematic analysis. Setting/participants: Participants receiving specialist palliative care in the community of a metropolitan city of Australia who requested an ambulance between January and August 2018, inclusive. Results: Participants considered paramedics with expertise and experience in palliative care as an extension of the specialist community palliative care team and held them in high regard. Participants highlighted the importance of: critical palliative care at home and a timely, responsive approach; person-centred paramedics; as well as safety and security. Conclusion: Patients and carers feel safe and secure when they know that highly responsive skilled professional support is available when an unexpected problem or sudden change arises, especially out-of-hours, and that support is delivered in an empathic and person-centred manner.

"I think I could have coped if I was sleeping better": Sleep across the trajectory of caring for a family member with dementia.

Dementia-related sleep changes can lead to disruptions among families living with dementia which can jeopardise carers' wellbeing and ability to provide support. This research explores and represents the sleep of family caregivers across the trajectory of caring, before, during, and after the key period of their care recipient moving into residential care. The focus of this paper is viewing dementia caregiving as a trajectory, characterised by care needs which change over time. Semi-structured interviews were conducted with 20 carers whose family member with dementia had transitioned into residential care within the prior 2years. Themes constructed from these interviews indicated that sleep was linked to earlier life course patterns as well as to significant moments of transition in the caregiving journey. As dementia progressed, carers' sleep progressively worsened in relation to the less predictable nature of dementia-symptoms, difficulty maintaining routines, and constant responsibilities creating a state of high alert. Carers attempted to facilitate better sleep and wellbeing for their family member, often sacrificing their own self-care. Around the care transition period, some cares reported not realising how sleep deprived they were; for others the busy momentum continued. After the transition, many carers acknowledged that they were exhausted, although many had not realised this while providing home-based care. Post-transition, many carers reported ongoing sleep disruptions associated with poor sleep habits established whilst caring, insomnia or nightmares and grief. Carers were optimistic that their sleep would improve with time and many were enjoying sleeping according to their own preferences. The sleep experience of family carers is unique and includes tensions between their essential need for sleep and the experience of care as self-sacrifice. Findings have implications for timely support and interventions for families living with dementia.

Carer involvement in the assessment of personal recovery: A naturalistic study of assertive community treatment in Norway.

The user and carer movements have come a long way in becoming embedded in mainstream mental health services for individuals with serious mental illness. However, implementing recovery-oriented practice continues to be plagued by an individualistic clinical focus. The carers do not feel integrated despite policies and best intentions. The implementation of Assertive Community Treatment (ACT) provided an opportunity to involve the carers and compare their assessment of personal recovery with the users. The aims of this study were to examine (i) how family carers and users differed in their assessment of personal recovery, (ii) whether familial and personal relationships influenced how carers assess personal recovery of users, and (iii) if the experience of family carers with the ACT team was associated with personal recovery. The naturalistic, explorative study recruited 69 users and 36 family carers from 12 Norwegian ACT teams. The users and carers assessed the user's personal recovery. Family carers also reported their experience and satisfaction with the ACT teams. Analyses included independent and paired sample T-tests and correlation analysis. Family carers were significantly more conservative than the users' assessment of the intrapsychic and interpersonal subscales of personal recovery. The pattern held true whether the family carers were matched to the users or part of the total sample. Lastly, there was a significant negative correlation between the family carer's experience of cooperation with the ACT team and their assessment of the user's intrapersonal process of recovery. The results of our study were consistent with previous research on carer involvement in MHS. However, it is the first study that engaged carers and assessed personal recovery of the users of ACT services. Discrepancy between carers and users is the rule. Clinicians are encouraged to embrace the discrepancy and diversity carers bring and learn the methodology of multi-informant assessments. There also is a need to address, update, and integrate the personal, familial, and relational aspects of recovery. Modification of recovery measures such as QPR and their creative use with carers has the potential to generate valuable third-party information and to involve them meaningfully in mental health services.

Religious Influences on the Experience of Family Carers of People with Dementia in a British Pakistani Muslim Community.

This paper reports on a study that begins to address the paucity of research around the religious motivations of Muslim carers of family members with dementia. Seven carers were recruited for interviews from the British Pakistani Muslim community concentrated in the Midlands and North of England. Interview transcripts were analysed thematically using an iterative collaborative methodology. The findings suggested that the Muslim faith plays a pivotal role as a support mechanism for individual carers and their families, but the wider faith community and its leaders did not typically offer support and could impede access to external care. This was a result of cultural pressure and lack of awareness both among religious leaders and the community as a whole. The study concluded that the inequality in access to dementia services may be constructively addressed if service providers engage with these faith concerns in the community and religious leaders to meet the needs of Muslims of British Pakistani origin.

Mental Health Family Carer Experiences during COVID-19: A Rapid Scoping Review of the International Literature

Abstract Internationally, people experiencing mental health challenges and psychosocial distress faced service disruptions, increased uncertainties and isolation, during the COVID-19 pandemic. Mental health family carers in turn experienced high levels of demand to fill gaps in service responses within a context of fear and uncertainty. A scoping narrative review methodology was undertaken to account for the varying methodologies of studies and the recency of the COVID-19 pandemic. Six databases were searched: Proquest, Ovid, Psych Info, CINAHL, Scopus, WHO COVID-19 database in January 2022. A total of 147 articles were identified, with 19 included in the final review. Findings revealed few studies focused on the experiences of mental health family carers during the pandemic. Studies that elevated mental health family voices identified they were more likely to provide emotional support than other carers, and less likely to receive government income support. Higher distress was present in family carers who lived with people with low independence, supported more than one person and provided higher levels of care. Family carers experienced concerns about—family members becoming infected during hospitalisations, accessing services, inappropriate and early discharges, care provision if family carers became unwell and the need for targeted responses and quality for online services.

Receiving and breaking bad news: A qualitative study of family carers managing a cancer diagnosis and interactions with healthcare services.

To explore family carer experiences of managing the process of receiving and breaking bad news about cancer. Family carers' experiences of bad news are underrepresented in the literature. This study involved oncology staff with personal experience of caregiving and carers to develop broader insights into the range of needs and difficulties experienced by family members in the process of managing a cancer diagnosis. This can help facilitate subsequent interactions with healthcare professionals and improve continuity of care. This is a descriptive qualitative study informed by the theory of social constructionism. Data were analysed using template analysis. Data were collected using semi-structured interviews and focus groups with 4 healthcare professionals and 17 family carers between January and July 2018. A purposive sampling strategy was used. Interviews were transcribed verbatim to explore participant experiences and perspectives on family carers managing a cancer diagnosis. Three key themes were identified: (1) receiving the bad news; (2) management of bad news and (3) interaction with healthcare and support services. These and associated subthemes are discussed, with recommendations for future research and practice. There was variability in the experiences and needs of carers involved in receiving and breaking the bad news. Although family members experienced a multitude of difficult emotions when the bad news was shared, they were not often able to discern help from healthcare professionals with sharing the diagnosis with the patient and others. This impacted on access to and use of healthcare and support services. Individualized approaches to communication are needed to enable carers to seek support and provide perspectives on the patient home environment and family structure. This can help tailor breaking the bad news and care plans. Anonymised results were shared with family carers to validate the congruency of the codes with their experiences.

Impact of the COVID-19 pandemic on family carers of those with profound and multiple intellectual disabilities: perspectives from UK and Irish Non-Governmental Organisations

BackgroundFamily carers of people with profound and multiple intellectual disabilities (PMID) experienced a reduction in healthcare services due to the COVID-19 pandemic. Many subsequently turned to Non-Governmental Organisations who worked to support families. However, little research has sought to capture the experiences of family carers or identify effective interventions which might support them. To address these concerns we explored the views of Non-Governmental sector workers across the UK and Ireland who supported families people with PMID during the COVID-19 pandemic. We also sought to explore their views on the characteristics of online support programmes for family carers. MethodsThis study employed a qualitative design using focus groups with participants (n = 24) from five Non-Governmental Organisations across the UK and Ireland. A focus group guide included questions on challenges, supports, coping and resources which helped during lockdown restrictions. Focus groups were held online, were audio recorded and transcribed verbatim. The resulting transcripts were pseudonymised and subjected to thematic analysis.FindingsFour themes were identified (i) ‘mental and emotional health’, (ii) ‘they who shout the loudest’ (fighting for services), (iii) ‘lack of trust in statutory services’ and (iv) ‘creating an online support programme’. Mental and emotional health emerged as the most prominent theme and included three subthemes named as ‘isolation’, ‘fear of COVID-19’ and ‘the exhaustion of caring’.ConclusionsThe COVID-19 pandemic has increased the vulnerability of family carers who were already experiencing difficulties in accessing services and supports for their families. While Non-Governmental Organisations have been a crucial lifeline there is urgent need to design services, including online support programmes, in partnership with family carers which adequately address their needs.

Evaluating the feasibility, experiences, facilitators of and barriers to carers and volunteers delivering Namaste Care to people with dementia in their own home: a qualitative interview study in the UK and the Netherlands

ObjectivesTo evaluate the feasibility, facilitators of and barriers to delivering Namaste Care by volunteers and family carers to community-dwelling people with dementia, and to map family carers and volunteers’ experiences...

Exploring carer resilience in the context of dementia: a meta-synthesis

AimsThe aim of this literature review is to integrate the results of qualitative research on the resilience experiences of family carers of people with dementia (PWD).DesignA qualitative meta-synthesis study was conducted.MethodsThe meta-ethnography method of Noblit and Hare (1988) was used. We searched five electronic bibliographic databases (PubMed, EMBASE, CINAHL, PsycINFO and Web of Science) using the keywords “caregivers”, “family caregivers”, “spouse caregivers”, “qualitative research”, “resilience, psychological” and “dementia.” The inclusion criteria of the literature search found studies that explored the resilience experience of family carers of PWD, were qualitative, were published in English, and had participants 18 years of age or older.ResultsEleven studies, 1 from Australia, 4 from USA and 6 from UK, were included in the analysis. Through the process, three themes emerged: ‘Seeing the life of a carer as one’s duty’, ‘Setting boundaries in life’, ‘Moving forward toward a developing life.’ These themes illustrated how family carers of PWD overcome the adversities they encounter.ConclusionThis meta-synthesis showed how family carers of PWD adapt to and overcome the difficult situations they are confronted with as carers. This review suggests an important direction for enhancing the resilience of family carers of PWD.