The provision of person‐centred care for care home residents with stroke: An ethnographic study

Abstract Care home residents with stroke have higher levels of disability and poorer access to health services than those living in their own homes. We undertook observations and semi‐structured interviews (n = 28 participants) with managers, staff, residents who had experienced a stroke and their relatives in four homes in London, England, in 2018/2019. Thematic analysis revealed that residents' needs regarding valued activity and stroke‐specific care and rehabilitation were not always being met. This resulted from an interplay of factors: staff's lack of recognition of stroke and its effects; gaps in skills; time pressures; and the prioritisation of residents' safety. To improve residential care provision and residents' quality of life, care commissioners, regulators and providers may need to re‐examine how care homes balance safety and limits on staff time against residents' valued activity, alongside improving access to specialist healthcare treatment and support.


| INTRODUC TI ON
In the United Kingdom (UK), although most stroke survivors return home after hospital treatment (King's College London, 2021a) some will need to move to a care home. An estimated 11% (United States [US]) to 18% (UK) of care home residents aged ≥65 years have a stroke diagnosis (Caffrey & Sengupta, 2014;Shah et al., 2011). We use 'care home' to include both care homes with a registered nurse on site and those without. Stroke survivors who move to care homes typically have severe limitations in daily self-care, including mobility, grooming, going to the toilet, dressing and eating (Clery et al., 2020;Dutta et al., 2018). The cohort moving to care homes from their own homes later on after a stroke has not been characterised; dementia and increasing disability are likely to contribute to deciding to move.
UK stroke care guidelines recommend that care home residents should receive the same standard of treatment/appropriate equipment as those in their own homes (Intercollegiate Stroke Working Party, 2016). The guidelines recommend training care home staff in stroke effects (physical, cognitive/communication, psychological, social) and managing common activity limitations. In practice, strokespecific training is not mandatory for these staff. International reviews of stroke care in residential facilities describe inadequate and unequal access to rehabilitation therapists and equipment, strokespecific care (formal reviews, health service contacts, nursing skills) and secondary stroke prevention (Gonçalves-Bradley et al., 2015;Teo & Slark, 2016).
'Person-centred care' describes approaches where care providers work in partnership with the care recipient, supporting informed choice in care and treatment, and make reasonable adjustments to meet individual needs and preferences. The concept of personcentred care has been used in research (Brownie & Nancarrow, 2013) and social care policy: for instance, it forms part of the regulation of UK care homes (Health and Social Care Act 2008 [Regulated Activities] Regulations 2014). However, research has highlighted a knowledge/practice gap among care home staff regarding the concept (Güney et al., 2021).
The main objective of this present study was to understand perceptions and experiences (of staff, affected residents, their relatives) of the needs and care of residents with stroke to better comprehend how their care and quality of life might be improved. While it is reasonable to think that 'person-centred' care should be sensitive to stroke-related disability, residents and staff may not prioritise stroke-specific care needs, given that most residents have multiple long-term conditions (Gordon et al., 2014). Therefore, we also sought to understand the relevance of stroke to care in perception and practice.

| ME THODS
We undertook semi-structured interviews and overt observation (Atkinson & Hammersley, 1998) in care homes located in socio-demographically diverse urban South London, England. The methodology was chosen to reveal the reality of care practices and lived experiences (Hammersley & Atkinson, 2007

| Participants
Following agreement with home managers, researchers invited staff to participate, using convenience sampling based on a range of roles (Table 2).
We sought to include all residents with stroke in the observation element. Our protocol excluded from interview residents with severe communication or memory problems. In these instances, we sought to interview a relative.
Home managers identified residents with a recorded stroke diagnosis (

What this paper adds
• Having had a stroke with associated disability is not perceived by all care home staff to be an important attribute for care planning purposes.
• Meeting needs and preferences, particularly in valued activities, is often not achieved for residents with stroke-related disability.
• Care home staff have limited access to training and support to help them care optimally for residents with stroke and respond effectively to stroke-related changes.

| Ethics
We gave potential participants an information sheet, allowing 24 h (minimum) before seeking written consent. During interviews and observations, if participants appeared distressed or uncomfortable, the researcher changed topic or postponed/ended data collection.
No personal care or other sensitive activities were observed.
If the researcher judged that a resident did not have capacity to consent to an interview or observations, we sought advice on their participation from a consultee following the requirements of the Mental Capacity Act (Mental Capacity Act, 2005). In practice, we identified personal consultees (family/friend) via staff.
We did not record data (directly heard or observed) without consent/consultee opinion. We sought consent from staff members working in participating residents' areas of the care home before observing interactions. Non-participating residents encountered in communal areas were told about the study and asked if they would prefer researchers to leave. Posters displayed in communal areas provided brief study information, researcher photographs and

| Data collection and analysis
The fieldwork team comprised two social scientists, E.S. and J.H., and a researcher physiotherapist, S.C. When consent/consultee opinion allowed, we used an ethnographic approach, spending time observing, being with and speaking with participating residents and staff (we had little opportunity to observe managers). We held introductory 'off the record' conversations with managers, staff and residents during an initial familiarisation period. Interviews lasted 30 min on average, were audio-recorded and transcribed verbatim TA B L E 1 Characteristics of participating care homes and numbers of participating individuals at each care home Transcriptions and observation notes (details anonymised) were stored securely. Thematic data analysis (Braun & Clarke, 2006) used both software (Nvivo v11 QSR International Pty Ltd) and paper-based methods (theme concept maps). Transcripts/observation notes were coded as a single dataset. First, researchers independently read and coded the data descriptively and inductively (i.e. not conforming to pre-specified codes, allowing 'unexpected' themes to develop) (Sandelowski, 2000). Second, the researchers and supervisor (C.M.) discussed code interpretations and their relevance to the research questions to develop a code categories framework (themes and sub-themes) (Timmermans & Tavory, 2012). The framework enabled material from observations and interviews to be grouped for comparison within and across themes and care homes. Similarities and divergences -stated practice/attitudes versus observed practice, and one source versus another -were noted in 'memos' which linked data extracts within themes. Themes and underlying data were discussed with all authors who included care home experts, clinical specialists in primary care, geriatric medicine and physiotherapy and health services researchers.

| FINDING S
Three of the four participating homes provided nursing care alongside personal care and all specialised in caring for people with dementia (Table 1). They were similar in layout: ground floor reception area; keycode access to floors where residents with more complex needs had their bedrooms; individual ensuite bedrooms along corridors; communal spaces (seating area with TV/radio, dining area); kitchens (staff use only, on floors where we observed residents) and offices.
Nursing care was provided on specific floors. We undertook 21 interviews (24 participants [three paired interviews]) and observations (28 participants) including managers, staff, residents and visiting relatives (Table 2). Staff had a range of job roles and grades: managers, (senior) care worker, (senior) nurse, activity coordinator, physiotherapist and administrator. Interviewed residents had lived in their home for between 2 and 8 years (approximately). Three participants (one in each of three homes) lived in nurse-led care areas of the home.
We organised our findings into five main themes, incorporating data from both interviews and observations and evidence from all homes. We have omitted any home identifier to ensure participants' anonymity and specify where an observation relates to some rather than all homes. We use 'staff' to mean home staff in general.

| Participation and autonomy in valued activity
Residents with stroke said they valued purposeful activities, similar to those in which they used to engage. For example, one resident, a keen library user, was asked about their aspirations for daily life: Very limited really. I would like to walk to some of the places we take the wheelchair to […]. To the library, a long distance to go.
Another resident was reported to enjoy purchasing items from the home's 'pop-up shop' for themself and for others unable to access it. We occasionally observed (in two homes) staff answering on residents' behalf (regarding preferences, such as whether the resident would like items moved in their room) rather than waiting for a response. One nurse also observed this and commented that staff needed to allow more time for residents with aphasia to communicate: We're asking and we're answering now ourselves for them and they're supposed to just with their eyes say (Observation excerpt, SCW01) In two care homes staff used tablet computers to record personal/ nursing care tasks and observations. This was supposed to be done at the point of care and promote accurate record-keeping, but staff commented that on busy shifts records would be completed retrospectively. This practice was also observed in a home that used paperbased records. Staff shortages increased time pressure: [SNu01] is seated behind the desk filling in medication forms. They are angry.
[SNu01] tells me they were the only [staff member] on the ground floor today -that is why they have to retrospectively fill in the medication. The two [care workers] they were meant to have had not turned up.
(Observation excerpt, SNu01) Managers explained that some residents, including those with stroke, would benefit from one-to-one care to support participation in planned and valued activities, but the funding paid by local authorities was insufficient to provide this level of staffing. An activity coordinator identified funding as a key limitation to delivering better care, which they perceived should incorporate activity as well as essential care: the [care worker] can't interact with everyone and she has so much things to do, paperwork, training, caring.
[…] If someone really wants to deliver the best care, I think you need to look into getting more funding to activity. (AC01)

| Safety and risk
Staff named safety as a priority for care: Safety. That's the first word that comes to my mind Although staff told us safety was paramount, in two homes we observed potentially risky practices: post-stroke residents being assisted to eat or handed a meal while in slumped positions in lounge chairs or recumbent in bed, increasing the risk of food aspiration. This could be due to incomplete staff training, but evident time pressures on staff around mealtimes probably also contributed to them not acting on residents' poor positioning: for example, care workers could not hand out meals and simultaneously safely reposition someone.

| DISCUSS ION
We report findings from a study using observations and interviews (n = 28) including various staff roles/grades, residents and relatives from four care homes. Our analysis identified five main themes: limited stroke awareness among staff, sensitivity to stroke specific needs, met and unmet needs of residents with stroke, time pressures on care, and safety and risk. Some themes represent challenges which may affect residents regardless of health conditions, but others, such as staff skills in positioning residents or anticipating swallowing problems, particularly affect residents with stroke.
This study provides evidence that stroke is under-recognised by home staff. Some staff lacked disability awareness in their interactions with residents with sensory impairment or a stroke-affected side. Some staff believed post-stroke residents were invariably immobile and unable to participate in leisure activity beyond conversation. Although awareness of a stroke diagnosis is arguably not essential to assess current self-care abilities and plan daily care accordingly, specialist skills and equipment (such as adapted cutlery, not seen in the homes) are required to optimise self-care participation. Most home staff do not have specialist skills and knowledge (Rigby et al., 2011;Skills for Care, 2020a), which are hard to promote in a sector with extraordinarily high staff turnover (Skills for Care, 2020b), and have few opportunities to learn directly from specialists. Consequently, staff may not recognise deterioration as stroke-related or understand the potential for someone with stroke to maintain or even improve function and participation.
Managers welcomed clinical specialists' input into care plans, but received little information from discharging hospitals relevant to caring for a specific resident with stroke. Some described difficulties accessing NHS community therapy services. Reviews of healthcare services to care home residents have long described unclear delineations of responsibility within/between homes and wider health and social care systems (Robbins et al., 2013) and emphasised the importance of joint care planning by home staff with visiting clinicians (Goodman et al., 2016).
Home managers and staff generally expressed support for care practices which promoted person-centred care and residents' independence, and we recorded examples of staff supporting residents' leisure participation. However, during observations in two homes staff often lacked time to even engage in conversation, much less support a library visit (for example). This may be a widespread problem across homes: a survey of English care homes in 2014/2015 found a third of staff were "never or almost never aware of a resident being taken out of the home for their enjoyment"; 15% were never or almost never aware of "an activity planned around a resident's interests" (Cooper et al., 2018).
Residents' preferences for care were not met when staff were too busy to do so safely, particularly residents being moved in a wheelchair instead of being assisted to walk. This occurred even when a resident so valued walking to the toilet that they knew the number of steps needed.
This study has limitations. The COVID-19 pandemic precluded follow-up fieldwork in the four featured homes and fieldwork in the planned two further homes. We excluded residents with severe communication/cognitive impairment from interview, limiting their contribution to the study. However, we attempted to interview residents with less severe communication/cognitive impairment using a specially-designed information sheet. Regarding strengths, our study design allowed us to triangulate data from observations and in-depth interviews. Based on study team experiences, we believe our findings are likely to be consistent with the range of care home practice and resident experience in the UK at least, although the employment of physiotherapists is not typical.

| CON CLUS IONS
Care home staff need to be supported (with paid time, encouragement) to access guidance and training about the effects/consequences of stroke for the individuals they look after. Care home providers need to have adequate funding for staff training and to employ sufficient staff so that training can be put into practice. However, it seems unlikely that the complex changes needed to improve the lives of residents with stroke will be achievable without further effort to overcome systemic problems affecting adult social care (staff working under pressure with insufficient time, high staff turnover and vacancies, low staffing levels, inadequate access to health data and professional support and so on) (Sampson et al., 2020).
More opportunities for valued activity could help reduce low mood/depression among residents whose identity and occupations have been disrupted by (stroke-related) disability (Robison et al., 2009). Homes may need to consider some re-balancing of perceptions of safety and risk regarding residents' participation in

ACK N OWLED G EM ENTS
This paper presents independent research funded/supported by

CO N FLI C T O F I NTE R E S T
All co-authors confirm that we have no conflict of interest to declare.

D I SCL A I M ER
The views expressed are those of the authors and not necessarily those of the funder/supporters.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are not shared due to the consent agreement with participants.