A different way of life: a qualitative study on the experiences of family caregivers of stroke survivors living at home

In the UK, there are 1.3 million stroke survivors (Stroke Association, 2022). Stroke is the fourth leading cause of death and the largest cause of adult disability, with two-thirds of survivors leaving hospital with a disability (Royal College of Physicians, 2017). To continue living independently at home, those stroke survivors leaving hospital with a disability often require care, which in many cases is permanent and usually provided by family members and friends (Intercollegiate Stroke Working Party (ISWP), 2016). The sudden onset of a stroke, plus its unpredictable recovery, makes it difficult for family members to adjust in to their caregiving role (Lincoln et al, 2011). Numerous systematic reviews have focused on a range of negative experiences and outcomes encountered by family caregivers of stroke survivors, such as information needs, lack of emotional support, caregiver burden, financial problems and not feeling prepared for their role (McKevitt et al, 2004; Greenwood et al, 2008; 2009; Kokorelias et al, 2020; Zawawi et al, 2020; Denham et al, 2022). However, evidence also suggests some positive outcomes from the family caregiver role, such as strengthened relationships and a sense of fulfilment (Mackenzie and Greenwood, 2012).

International stroke guidelines recognise the significant role that family caregivers play and recommend that their needs are assessed and supported (Cameron et al, 2016; ISWP, 2016; Stroke Foundation Australia, 2017). However, there is minimal guidance on how the assessments should be conducted. Changes to UK legislation in 2014 introduced the Care Act 2014 and resulted in new rights for all family caregivers, providing them with the same legal rights and entitlements as those they care for (UK Parliament, 2014). The Act places a legal duty on local authorities to assess any family caregiver who requests an assessment or appears to need additional support, regardless of how much care they provide. Nevertheless, the support given to family caregivers is not usually standardised and carers’ assessments are not universally undertaken. National economic restraints have resulted in service cutbacks with limited resources to undertake these lengthy assessments (Carers UK, 2017).Therefore, the number of carers’ assessments have steadily declined in England from nearly 450 000 per year in 2009/10, to just over 350 000 per year in 2017/18 (Fernandez et al, 2021), and this number is expected to have fallen further because of the impacts of the COVID-19 pandemic.

Despite a plethora of literature exploring the challenges experienced by family caregivers of stroke survivors, relatively few studies have been conducted in the UK since the implementation of the Care Act 2014 (Kokorelias et al, 2020; Denham et al, 2022). This study explored the experiences of family caregivers of stroke survivors following the introduction of the Care Act 2014.

Methods

A qualitative approach was adopted to allow the exploration of participants’ behaviour, feelings and experiences of important issues or phenomena (Holloway and Galvin, 2017).

Ethics

Ethical approval was obtained from the University's Faculty Research Ethics Committee (FOHSC, 119). All standard ethical procedures, including advertising the study, participant information sheets, consent and data storage were followed.

Participants and recruitment

Purposive sampling was used to recruit family caregivers attending support groups run by a national stroke charity in the north-west of England. Flyers advertising the study were distributed via the support groups. Additionally, community-based stroke coordinators assisted recruitment by informing caregivers about the study during home visits. Family caregivers (defined as any family member who was active in supporting a stroke survivor in any way) had to be residing at the same address with the stroke survivor, aged over 18 years and English speaking.

Data collection

Face-to-face, digitally recorded semi-structured interviews were undertaken between February and April 2016 lasting between 35 and 55 minutes. An interview guide was developed from existing literature and refined by eight family caregivers of stroke survivors and staff working within stroke services as part of patient and public involvement in research (National Institute for Health and Care Research, 2014). The interview included questions about the demographic information, the caregiving role, and the support and assessments received (Table 1). Additionally, participants were asked to describe the abilities of the individual they were supporting based on information from the Modified Rankin Scale (a scale commonly used to assess the degree of disability in stroke survivors) (Van Swieten et al, 1988). In total, 16 participants were recruited and interviewed at a suitable location of their choice (Table 2).

Data analysis

Interviews were transcribed verbatim and anonymised by replacing all identifiable information with pseudonyms. Qualitative data analysis software, NVivo version 11® assisted with organising the data. Six phases of thematic analysis (Braun and Clarke, 2006) were followed. Two members of the team (JT and BJ) independently reviewed half of the transcripts to establish agreement with the preliminary themes. The themes were later discussed with the wider team to enhance rigour (Silverman, 2017). Two main themes were identified: effects of caregiving and the unmet needs of the caregiver (Table 3). Unique numerical identifiers denoting participant number, relationship to the stroke survivor and age were adopted to maintain confidentiality and exemplars of quotes provided to substantiate findings.

Findings

The effects of caregiving Physical effects

Most family caregivers stated that they provided assistance with activities of daily living, such as mobility and toileting. It was evident that supporting stroke survivors can be physically demanding, with some referring to their caregiver role as ‘hard work’. This was the case for most caregivers, especially during the early days following hospital discharge as, over time, the stroke survivors’ functional abilities appeared to improve.

‘He couldn't walk unaided, to stand up originally I'd have to put my hand underneath his bottom and lift him up, it was hard work, but now he's actually walking round with the aid of a stick which is absolutely unbelievable …’

(P10-Wife-56-65).

On the contrary, participants who were supporting individuals who suffered recurrent strokes reported increasing demands.

‘Since December, things just went bad to worse. I've got two carers four times a day but it's just hard because in between, I've got to transfer him onto a perching stool …’ (P9-Wife-66-75).

An increasing workload from routine chores combined with the additional tasks to support the stroke survivors often led to tiredness. Furthermore, waking up at night to assist with positioning and toileting contributed to fatigue. For most participants their increasing age, poor health and frailty hindered their ability to perform some tasks.

‘Because I am 70 next birthday, I have told him I can't be doing this on my own, he's going to have carers in because I do have a bad foot and I'm finding it difficult to walk, I have high blood pressure, I will get carers in to take the strain off me’ (P15-Wife-66-75).

Emotional effects

Overwhelmingly, participants described the impact of having to managing the emotions and behaviours of the stroke survivors, as well as their own feelings. Most family caregivers offered encouragement and reassurance to the stroke survivors ‘to raise their spirits’ as they adjusted to the devastating effects of the stroke. However, managing the stroke survivors’ emotions and behaviour remained a major and ongoing challenge.

‘The daily aspects of looking after (husband) we've got quite comfortable because we're doing downstairs living, but I think it's keeping his morale up, I'd say that is the hardest …’ (P12-Wife-66-75).

Participants cited a range of behaviours and emotions exhibited by the stroke survivors that they found challenging, for example, mood swings, impatience, depression, verbal abuse, social withdrawal and demanding behaviour. The unpredictability of these behaviours, coupled with the lack of insight by the stroke survivors, made it difficult for the family caregivers to cope.

‘If I tell him to do things, I'm bossy and get told to get lost. I've been told in no uncertain terms that I'm useless, helpless and rubbish … I find that very hard to take in’ (P9-Wife-66-75)

There was a clear emphasis from participants that managing their own feelings and emotions was a major challenge. Feeling upset because of the sudden changes to their lifestyle and the effects of the stroke on the survivors were commonly described. Participants also reported feelings of depression and suggested common triggers to be abruptly taking up the caregiving role giving up employment and living in fear of a recurrent stroke.

Being taken for granted by health and social care professionals was also highlighted. Although some participants managed to seek emotional support from professionals, most were reluctant for fear of being commenced on antidepressants.

‘If you would have talked to somebody who had had that experience you could say to them, ‘I start to hate myself’, and they say ‘yeah but it is just a normal human feeling’. Talk to a professional then they will be writing your prescription or sending you to the funny farm to be assessed …’ (P5- Husband-56-65).

Socio-economic effects

The caregiving role presented negative impacts on family caregivers’ social lives and financial situations. They described living a ‘different sort of life’ as they could no longer engage in hobbies previously enjoyed with the stroke survivor, such as walking or going on on holiday.

‘Well, it were a totally different way of life for us because we went out regular and had holidays all the time but all that is not there now, it is a different sort of life than we had before …’ (P14-Wife-66-75).

Isolation was also reported and several discussed challenges with maintaining social relationships.

‘I do go to church and have friends at church and I am finding it harder now because I am looking after (husband), but I am not mixing with people quite as much and I feel isolated …’ (P8-Wife-76 plus).

For most participants, taking up the caregiving role led to financial difficulties. Although the majority were retired, four participants gave up employment. Increasing expenditures, particularly with regards to transportation, resulted in many family caregivers reporting financial challenges. A few reported lack of information on how to seek financial support, while some described receiving financial assistance, such as benefits, to make ends meet. Although most participants were appreciative of the financial support received, others seemed dissatisfied with the amount and the length of time they had to wait to receive support.

‘You have got to be 6 months down the line to get it, even attendance allowance you cannot get, and it is in the first 6 months that you need it because your expenses go up and your outgoings increase when someone is ill …’ (P6-Wife-66-75).

The unmet needs of family caregivers

Lack of respite from caring

There was a clear sense from participants that they occasionally needed time off from caring to rest. Both new and established family caregivers (those who had been providing care for several years) expressed their desire to have a break. Only four participants mentioned having accessed respite support.

‘What would help me was for him to be taken off my hands so that I could have my head to myself and not constantly thinking about his needs. so that I could have a break you know, because it is constant … ‘ (P7-Wife-76 plus).

The requirement for respite was varied. Some preferred having a few days, others wished for longer. Leaving the stroke survivor alone, even for a few hours, was not an option for most family caregivers due to concerns over their safety. Barriers, such as dissatisfaction with services and reluctance of the stroke survivor, were cited by the few participants who attempted to access respite support. However, the majority reported the lack of information on how to access respite services as the main barrier.

‘To tell you the truth, I would not even know how to apply for respite care because no one has ever mentioned it to us. I would not even know how to go round it …’ (P13-Husband-56-65).

Lack of information

Participants strongly reported a general lack of information, specifically from hospital staff at the point of discharge. Furthermore, the majority were unaware of locally available carer support services..

‘And you are a ship without a rudder - there is nothing, and you do not know about the various pieces that you can get, the various supports that there are …’ (P5- Husband-56-65).

Additionally, uncertainty regarding recovery of the stroke survivors affected the ability of the family caregivers to plan for the future. Participants wanted to know from professionals how far their spouse's abilities would improve or how long they would continue in their caregiving role.

‘You are constantly saying, ‘well is he going to get better?’ And they constantly say, ‘it takes time, we cannot tell you, every stroke patient is different …’ (P10- Wife-56-65).

Lack of support

Most participants remarked on the invaluable support they received from friends and family, as well as health and social care staff that made their role bearable. However, family caregivers experienced difficulties where support was not forthcoming and some expressed disappointment at a lack of support from certain family members

‘His family is not helpful, and my family is busy, if people helped more, then maybe things would be better, but they just do not …’ (P2-Partner-Female-36-45).

Not having a listening ear was another unmet need that was reported. Participants discussed their desire to have ‘someone’ to talk to, who could listen to them, either face-to-face or over the phone. Although a few appeared to be receiving this support from close friends, the majority were not:

‘Whether it is a listening ear or counselling service that could be offered to carers especially in that initial phase when you are coming to terms with what has happened, that could be useful …’ (P11-Wife-66- 75).

Additionally, some participants described a lack of support from professionals and paid caregivers. Participants who were receiving additional support with personal hygiene tasks from paid caregivers cited the lack of flexibility and inconsistencies as deterrents for continuing to receive such support. With regards to equipment provisions, most participants received their required equipment, such as commodes, on time. However, others clearly expressed dissatisfaction and reported delays.

‘We have not got a chair for him to sit on and our couch is too low … we are still waiting for a proper chair for (person's name) and he has been home since July’ (P2-Partner-36-45).

Discussion

Findings from this study suggest that despite changes to legislation, family caregivers continue to experience challenges when supporting individuals following a stroke. Physical, emotional and socio-economic effects of caring were reported in the current study, which are consistent with findings from national and international studies (Greenwood et al, 2009; Kokorelias et al, 2020). Additionally, participants in this study discussed their unmet needs regarding information, respite and support, findings that were also reported by Zawawi et al (2020) and Denham et al (2022).

Overwhelmingly, participants reported negative emotional experiences, such as frustration and depression, with only a few admitting to having sought support. Others were reluctant to request help due to fear of being started on antidepressants. These findings support existing literature, as similar observations were made in a UK survey conducted by the Stroke Association (2013) involving over 2000 respondents. Although 79% of respondents had experienced anxiety and 59% felt depressed, 66% did not seek any support or receive advice (Stroke Association, 2013). The fear of being commenced on antidepressants described by participants in this study may indicate a lack of knowledge regarding the treatment options available, such as counselling (Thomas et al, 2017). The findings from this study reinforce the need for information from health and social care professionals on available treatment options to enable family caregivers to seek appropriate support. The findings also support the need for further research focusing on interventions that would assist family caregivers of stroke survivors in managing their emotions (Cheng et al, 2014).

Lack of respite support was emphasised as an important unmet need in this study. These assertions highlight the value of respite support among stroke family caregivers and are consistent with previous research within this population (Bastawrous et al, 2015; Torregosa et al, 2018). Provision of respite support enables family caregivers to have an independent life alongside caregiving, which reflects a key aim of the Care Act 2014 (Marczak et al, 2022). In this study, very few participants accessed respite support. Although various barriers were highlighted by participants, it should be acknowledged that the provision of respite services vary widely across the UK, which may potentially prevent family caregivers from accesing respite support. This is an area in need of further reseach and consideration by local authorities in order to make the ambitions outlined in the Care Act, 2014 a reality.

As reported, these findings indicate that the needs of stroke family caregivers are still not regularly assessed post the Care Act 2014. Only four out of 16 participants confirmed they had completed a formal carers’ assessment. When undertaking assessments, delays of up to 7 months were identified. The lack of carers’ assessments among family caregivers observed in the current study was previously highlighted as a concern by the Care Quality Commission (2011) who reported that, nationally, less than half of stroke family caregivers were offered an assessment and received support. Ignorance regarding carers’ assessments in this study and the general caregiver population could partly explain the low uptake of carers’ assessments. A commissioned report for the Carers Trust in 2016, ‘Care Act for carers: one year on’, concluded that further work is warranted to ensure that family caregivers are aware of their rights and that the quality of assessment is of a high standard (Bennett, 2016). This study's findings support the report's conclusions. Additionally, it can be suggested that alternative, proactive approaches to identifying the needs of stroke family caregivers are required to prioritise those needing a detailed carers’ assessment. Findings from this research provide an insight into the challenges that family caregivers of stroke survivors continue to experience post the Care Act 2014. However, the findings should be considered in light of some limitations. Participants were recruited from one geographical area in the UK and focussed on older spousal caregivers. Additionally, the exclusion of non-English speaking family caregivers warrants further research with the increasing diversity within the UK.

Conclusions

This study indicates that family caregivers of stroke survivors continue to experience considerable problems despite changes to legislation. Shortfalls in existing approaches to the assessment of family caregiver's needs are apparent. These findings have informed the development of a screening tool to be used with family caregivers of stroke survivors. Since data collection was undertaken, the COVID-19 pandemic has led to reduced services, resulting in a decline of assessments and support. The impact of the pandemic, coupled with the lack of assessments and support pre-pandemic, can be suggested to have had major impacts upon family caregivers and needs urgent attention.

Key points

• Family caregivers of stroke survivors continue to experience challenges when providing care and have unmet needs, such as a lack of information, financial problems, and a lack of respite and emotional support despite changes to legislation
• Gaps in assessing and supporting the needs of family caregivers of stroke survivors are evident, including assessment delays
• Alternative proactive approaches are required to identify and support the needs of stroke family caregivers on a regular basis
• Further research focussing on interventions to support stroke family caregivers is warranted.

CPD reflective questions

• What organisations or services are available in your local area to support family caregivers of stroke survivors?
• What type of respite support services are available in your area?
• What changes can you make to your practice as a result of reading this article?