Perceptions and experiences of South Asian families living with frailty in England: a hermeneutic phenomenological study

ABSTRACT

Background and objective

Older adults of a South Asian heritage are predisposed to frailty, yet they remain less likely to access targeted frailty services for support with their health and wellbeing. Little is known about how older South Asian adults and family members perceive and experience frailty. The aim of this study was to examine South Asian families’ perspectives and experiences of frailty to inform health services and increase access for families living with frailty.

Research design

Hermeneutic phenomenological design.

Methods

Eight people living with frailty and eight family carers were purposefully selected from community settings in West Yorkshire, England. Data were collected in July 2021. Semi-structured interviews were audio recorded, transcribed, and thematically analysed.

Results

Four themes were identified; a naturally degenerating mind and body, beliefs about frailty causality, impact of frailty, and adapting to living with frailty. Frailty is perceived as degeneration of the mind and body which occurs as a natural part of the ageing process. It is also associated with lifestyle, previous employment, and viewed as God ordained. Frailty profoundly impacts the lives of South Asian families by causing stigma, isolation and loneliness, and negative emotions. However, South Asian people believe it is possible to adapt to living with frailty through making adjustments and using religion as a coping strategy.

Discussion and implications

This study identifies a need for educational interventions for South Asian families which raise awareness around frailty to reduce stigma and enable access to appropriate frailty support and services. It is also imperative for health, social care and third sector providers to consider the individual meaning of frailty for this population in relation to their cultural and religious context and beliefs, to understand how this may impede decisions to seek frailty care and support, and their needs in relation to service provision.

KEYWORDS:

• Frailty
• South Asian people
• ageing
• illness perceptions
• support services
• United Kingdom

1. Introduction

The prevalence of people living with frailty is set to increase due to the anticipated global rise of people aged 60 and above to approximately two billion by 2050 (Hale et al., 2019). Frailty is a clinical health condition characterised by age-related decline in energy reserves and functions across a number of physiological systems (Pradhananga et al., 2019). It increases risk for adverse health outcomes for older people including dependency, lower quality of life, institutionalisation, and death (Archibald et al., 2020; Kojima, 2017). This long-term condition characterised cumulative decline leads to individuals needing the support of health and social care services (Han et al., 2019). Almost 10% of community-dwelling adults aged over 65 are living with frailty in the UK (British Geriatrics Society, 2015) with those from a South Asian background possessing a higher likelihood of poor health as a result of frailty (NHS Leeds CCG, 2019).

South Asian people from Pakistani, Indian, and Bangladeshi backgrounds are the largest minority ethnic population in the UK (Lucas et al., 2013). Prevalence rates of frailty are higher in South Asian older adults compared to other populations (Castaneda-Gameros et al., 2018) due to various risk factors which attribute to frailty within this population, leading to them experiencing poorer functional health (Brunner et al., 2018). Risk factors include, lower economic and educational status (Dugravot et al., 2020), reduced social support beyond family networks (Buttery et al., 2015), increased incidence of depression (Chu et al., 2019) cognitive impairment and functional decline (Ahmad et al., 2018), and diabetes, arthritis, and stroke (Cheong et al., 2020). Moreover, behavioural factors such as smoking (Thompson et al., 2018), poor diet (Kojima et al., 2018), and polypharmacy have all been linked to frailty in South Asian older adults (Pengpid & Peltzer, 2020).

As the number of South Asian older adults with frailty continues to rise, prevalence rates are also predicted to increase (Hanlon et al., 2018). Yet despite their predisposition to frailty (Fernando et al., 2015), South Asian older adults remain less likely to access or utilise targeted frailty services (Bibi et al., 2014; NHS Leeds CCG, 2019), often resulting in support needs remaining unmet and inappropriate treatment or care provision being offered by service providers (Bhattacharyya & Benbow, 2013). This can impede on the overall improvement of health and wellbeing for South Asian elders (Vlachantoni, 2017). It may however be possible to improve access to support services for this group by understanding how frailty is perceived by South Asian older people and their family members. Then, interventions could be developed which may lead to people potentially accessing appropriate frailty support and services.

Previous research around perceptions of frailty in the United Kingdom concentrates on the general population rather than the South Asian community (Shafiq et al., 2023). For example, studies found beliefs that frailty was linked with age-related physical and social decline, causing stigma and discrimination and impacting on individuals’ independence and sense of self (Skilbeck et al., 2018; Warmoth et al., 2016). Frailty has also been perceived as an irreversible state in older age, which caused aversion towards the term frail (Britain Thinks, 2015; Ipsos Mori, 2014; National Voices, 2014) On the other hand, Nicholson et al. (2013) found frailty was not perceived to be linked to old age and could be controlled by using individual coping strategies. However, perceptions and experiences of frailty in South Asian communities residing in the UK are unknown (Shafiq et al., 2023). It is crucial to explore the beliefs of this population to understand how these may influence people’s needs and decisions to access frailty support services. This study therefore aimed to understand the perspectives and lived experiences of South Asian families living with frailty within the UK context by answering the research question, ‘How do South Asian older people living with frailty and their family members perceive and experience frailty?’

2. Methods

2.1. Study design

This study employed a hermeneutic phenomenological approach to increase knowledge of the lived experiences and attributed meanings of frailty in South Asian families. The specific focus was on how lived experiences influenced perceptions of frailty among older people and their family members (van Manen, 2016). Hermeneutic phenomenology is a valuable approach as it allows a thorough understanding of South Asian families’ lived experiences, which are shaped by their everyday practices, traditions, and culture (Oerther, 2020). It seeks to describe and interpret lived experiences and their meanings in a rich and deep way by going beyond merely the descriptive accounts of lived experience, and searching for meanings collected from participants’ narratives (Lopez & Willis, 2004). As hermeneutics is concerned with the study of texts, the lived experiences depicted in texts are interpreted for their meaning (Philipsen et al., 2019) to effectively articulate how personal relationships, day-to-day challenges, and available resources can shape the ordinary routines and practices of South Asian families living with frailty. It was important to understand South Asian families’ lived experiences of frailty and the meanings given to them, to try and improve access to and use of frailty services for this population.

2.2. Study locations

The study was conducted across the West Yorkshire region of England, United Kingdom.

2.3. Participants

Flyers and an information sheet containing study details were electronically forwarded to Community and Voluntary organisations, South Asian health and wellbeing services, religious organisations, senior centres, and community leaders across West Yorkshire. Participants were also sought through personal contacts of participants, organisations, and social media.

A purposive sampling strategy was used to recruit participants, to allow the deliberate identification and selection of participants who possessed particular knowledge and experience of living with frailty. The sample of participants was recruited from West Yorkshire, where the predominant South Asian communities are from Pakistan, India, and Bangladesh. This included older people living with frailty and family members with experience of caring for them. Potential participants were screened for eligibility by representatives from community groups working with South Asian communities and the first author, based on the study inclusion/ exclusion criterion (Table 1).

Table 1. Inclusion/ exclusion criterion.

Older adult participants	Family member participants
Aged 60 years and older (due to the potential of developing more health problems and frailty)	Aged 18+
Self-identifying as living with frailty	Spouse, son, daughter, son/daughter in law, brother, sister, brother/sister in law, granddaughter/son, providing daily care or support to frail older family member.
Pakistani, Indian and Bangladeshi ethnicity (due to being the largest South Asian population groups residing in the West Yorkshire geographical region).	Pakistani, Indian and Bangladeshi ethnicity.
Residing in West Yorkshire	Residing in West Yorkshire
Ability to speak English/ Urdu/ Punjabi	Ability to speak English/ Urdu/ Punjabi
Ability to understand purpose of study	Ability to understand purpose of study
Capacity to provide informed consent	Ability to provide informed consent
Exclusion: Unable to understand purpose of study or provide informed consent following initial contact.	Exclusion: Unable to understand purpose of study or provide informed consent following initial contact.

2.4. Ethics approval

Ethics approval was granted by the Chair of the Humanities, Social and Health Sciences Research Ethics Panel at the University of Bradford in July 2021 (ref E898).

2.5. Data collection

The first author received referrals of interested participants and contacted them by phone. The information sheet was read and explained to participants to ensure informed consent, sufficient knowledge and understanding of the study, and awareness of the cooling-off period should they have wished to withdraw from the study. Verbal consent was acquired and audio recorded for all who agreed to participate.

Data were collected from July to November 2021. Separate one-to-one semi-structured interviews were conducted with older people and family members in English, Urdu, and Punjabi, (the languages spoken by the 1st author) and lasted up to 90 min. Eight interviews were conducted via telephone and one via zoom due to Covid restrictions which when eased, led to the final seven interviews being carried out face-to-face in participants’ homes. Semi-structured interviews were particularly valuable for allowing people to express their subjective thoughts, beliefs, and experiences of living with frailty through a flexible interview guide and open-ended questions (DeJonckheere & Vaughn, 2019). Interviews in English were recorded and transcribed verbatim. Those conducted in Urdu and Punjabi were translated into English and transcribed by the first author. Words that may have a different meaning in each language were translated to the closest translation e.g. kamzori (weakness), kamzor (frail), and hafqi (anxiety).

2.6. Data analysis

NVivo software was used and data were analysed using Braun and Clarke’s (2022) thematic analysis framework. Throughout the analytic process, particular attention was paid to participants’ lived experiences and how these shaped their perceptions of frailty. This phenomenological lens informed the development of key themes addressing the research question (Table 2). In order to increase trustworthiness of findings, all categories and themes were checked by all authors.

Table 2. Braun & Clarke thematic analysis (2022) framework.

Familiarisation with data	First author familiarised themselves with the data by reading and rereading data; making notes.
Generate initial codes	First author assigned initial codes systematically across entire dataset; extracted data relevant to codes; discussion held of initial codes with co-authors; some codes discarded.
Search for themes	All authors assigned final codes and collaborated to search for and generate themes; gathered all data relevant to potential themes.
Review themes	All authors collectively reviewed themes relative to coded extracts and dataset to ensure consistency.
Define and name themes	Authors collaborated to refine and generate clear definitions of theme names in accordance to the review question.
Producing the report	Discussion held with all authors to select and offer final analysis of clear extract examples in relation to review question and literature; first author produced final report.

3. Results

A total of 16 people participated in the study (Table 3). Older participants were 5 females and 3 males, aged 65–78. Family carer participants (3 females and 5 males) aged 30–69 years all spoke in English. Four themes were identified from analysis of the data: a naturally degenerating mind and body; beliefs about frailty causality; impact of frailty; adapting to living with frailty.

Table 3. Participant demographics.

Participants	Age	Gender	Ethnicity	Language	Religion
Older person	78	Female	Pakistani	Punjabi	Muslim
Older person	68	Female	Pakistani	Punjabi	Muslim
Older person	66	Female	Pakistani	Punjabi	Muslim
Older person	73	Male	Pakistani	English	Muslim
Older person	69	Male	Pakistani	English	Muslim
Older person	73	Male	Pakistani	English	Muslim
Older person	68	Female	Indian	English	Sikh
Older person	65	Female	Pakistani	Punjabi	Muslim
Family carer (daughter)	34	Female	Pakistani	English	Muslim
Family carer (son)	45	Male	Indian	English	Sikh
Family carer (daughter)	60	Female	Pakistani	English	Muslim
Family carer (son)	69	Male	Pakistani	English	Muslim
Family carer (daughter)	30	Female	Pakistani	English	Muslim
Family carer (son)	48	Male	Pakistani	English	Muslim
Family carer (son)	42	Male	Pakistani	English	Muslim
Family carer (son)	42	Male	Pakistani	English	Muslim

3.1. A naturally degenerating mind and body

Many participants perceived frailty symptoms as a degenerating mind and body as part of the natural ageing process. This encompassed physical and cognitive decline which reduced functional and cognitive abilities.

3.1.1. Physical deterioration

Many older people described their lived experience of physical deterioration as they aged, leading to difficulties in daily living as the body gradually declined over the years;

… when a person gets older they do find it difficult to do things they could do before. You just don’t have the same strength and abilities you had when you were younger, so it’s only natural that your bones will get weaker and you’ll get aches and pains in your body. You lose your strength and can’t do things you could do before. (Shameem, Older Female)

One older participant compared their experience to a machine no longer functioning as it should;

Kamzori [frailty] signs is … when body is not working, like machine working fast. You know, when you get kamzori, machine, body, is working slowly … . like old machine, and is not working properly. (Ghulam, Older Male)

Some participants experienced frailty as recognisable through visible physical characteristics specifically attributed to older adults;

If I was to hear the word frailty, … that would mean that somebody’s elderly. … not of a big build … I’d be describing somebody probably stooped over … and slow. (Sunny, Male Carer)

3.1.2. Cognitive decline

Some participants described their experiences of frailty as a natural cognitive decline in individuals but this was less apparent than physical symptoms. Decline was believed to be recognisable through a reduction in decision-making skills within individuals;

…  well one of the symptoms that I’ve noticed is reduced decision making as she has got older. Mum can’t make decisions on little … things […] mental frailty if you know what I mean … The unseen kind of frailty … Yeah, my mum is slowing down. (Amina, Female Carer)

3.2. Beliefs about frailty causality

From their lived experiences, many participants felt that causal factors of frailty included lifestyle and previous life experiences, as well as being ordained by God.

3.2.1. Sedentary living

From experience, most participants described how frailty could develop from a sedentary lifestyle and that low levels of physical activity heightened risk of frailty in individuals;

I feel that if the lifestyle isn’t in check, that can contribute to frailty … Not moving, living you know a sedentary lifestyle … lack of getting exercise, being very sort of stagnant in their life. (Sophia, Female Carer)

3.2.2. Poor nutrition

From their experience, some participants expressed how poor nutrition was a controllable causal factor of frailty. It was felt that a lack of knowledge and cultural traditions leading to a poor diet increased frailty in South Asian people, which could be reduced through healthy nutrition;

Because they don’t know what is the quality food is … their culture. Same curry, same roti [chapatti] and that curry is cooked … everything is mesh, you know. Every vitamins … will be finish … So, advice is healthy eating … to live long life. (Sajawal, Older Male)

3.2.3. Previous employment

Some participants perceived past employment as a causal factor of frailty. One carer participant believed that experiencing a lack of health and safety regulations and support during his mother’s previous job roles had contributed to her physical health problems, which worsened with time and in turn accelerated frailty;

I think for my mum … her lifestyle really … her job that’s what she had. She was a nurse, and she was caring for others. Years ago, there was no risk assessment for lifting patients in and out of bed … I think the nurses used to just grab a patient, pick them up out of bed, and then later on they struggled with bad backs. (Sunny, Male Carer)

3.2.4. Emotional trauma

A number of participants described experiences of emotional trauma, including bereavement, that was understood to have triggered emotional and physical deterioration and feelings of weakness. Frailty in later life was perceived to be a consequence of emotional trauma earlier in life;

The loss of my three children over the years has made me more kamzor [frail]. It started with depression when my children died, so much depression, and then slowly … the depression lead to weakness in my bones and kamzori [frailty]. (Sajawal, Older Male)

3.2.5. Diagnosis of disease

Some participants felt their experiences of receiving treatments for existing health conditions had led to frailty. For them, frailty was understood to accelerate with the progression of disease;

… I’ve got a few problems now because of my cancer, if I didn’t have them problems I think this time will have been my best time. The cancer treatment … when they take your bladder out, it’s not very nice. I would have been like a spring chicken! [laughs]. [Rehman, Older Male]

3.2.6. God ordained

Among many participants, frailty was experienced as ordained by God. One carer referred to religion when stating that the condition was not personally controllable, but rather that ultimate control lay with a higher power.

…  He [father] was fit and healthy until he had … his fall … [He] took care of his health … lifestyle … But when you are going to lose your health suddenly, its bestowed upon you from God. (Naeem, Male Carer)

3.3. Impact of frailty

Across many participants there was a perception that frailty negatively impacted on peoples’ lives by causing loss of normality, independence, social relationships, and negative emotions.

3.3.1. Loss of normality

Among some carer participants there was a perception that frail individuals were no longer normal, being viewed as dysfunctional members of society due to the struggles they experienced with daily life;

… you’re not able to sort of be like a normal functioning member of society […] sort of opposite of like your normal day, you’d get up, … have a wash, … do a little bit of tidying and things like that … (Rehana, Female Carer)

Older participants felt their experiences of no longer being able to engage in activities which brought them joy caused loss of their anticipated vision of a fulfilling normal retirement;

It means … I’m not having normal life, what I should be having […] the things I wanted to do when I’m retired, I wanted to enjoy my life, … I can’t do it. (Manish, Older Female)

Some carer participants’ experiences of providing on demand care for frail family members also caused them to view their lives as no longer normal;

Of course, it limits, you know what normal life used to be … I need to be there for him … as and when he requires. So, you have to drop a lot of things … It’s them things that were normal to you that are not anymore. (Naeem, Male Carer)

3.3.2. Loss of independence

Many carer participants experienced frailty as a loss of independence, believing that the condition increased reliance on others for support:

… frailty I think also is … generally a loss of yourself and a loss of your independence … So, they’re having to sort of rely more on others. (Sophia, Female Carer)

Some older participants’ experiences of losing their independence affected their self-esteem. They therefore believed they could maintain their independence by continuing their usual activities;

You know, things I like to do myself, I can’t do. […] I used to be a very proud man, I never ask anybody for help … I still don’t like to ask for help … I still trying do it everything myself. (Ghulam, Older Male)

3.3.4. Loss of social relationships

Many older participants felt their experiences of low mood and physical energy had changed their attitude to engaging with others, leading to loss of their social relationships;

I don’t have the will for worldliness and pleasantries … I have just lost interest … It’s too much energy … speaking to others outside the home. (Shameem, Older Female)

Many carers also felt their experiences of caregiving placed significant demands on their time, thereby influencing their ability to socialise with family and friends;

… the amount of time you can spend with people and your family, I mean, it’s drastically reduced. Of course, that’s a big difference to friendships, that’s gonna make a difference … (Naeem, Male Carer)

3.3.5. Negative emotions

Many older female participants experienced negative emotions as an impact of frailty. Some reported their experiences of no longer being able to engage in meaningful activities as impacting on their sense of purpose by diminishing their self-worth;

… before I used to sew so many lovely clothes of different designs … . So sometimes when I think of … things I could do before, I feel really upset about it. I feel I’ve become so useless. (Shameem, Older Female)

Carers also felt that the accumulation of responsibilities as a result of caregiving caused disputes amongst partners, which added to the overall stress experienced by the carer;

It’ll cause a bit of upset … you get a little bit from your missus, ‘Oh can’t you come today?’ Are you going straight to your mum’s after work?’ ‘You haven’t done this’ … You do have a few arguments […] Can be a bit stressful really, all the responsibilities. (Sunny, Male Carer)

3.4. Adapting to living with frailty

Across participants, there was a perception that some individuals could live well with frailty through a number of aids and adaptive strategies, although these were not useful for everyone.

3.4.1. Adapting to the home environment

Some carers felt that installing aids and making adaptations to the home environment had helped manage their older family members’ physical struggles with stairs use and bathing. One older participant believed their experience of remaining active within the home environment afforded them the ability to manage changes in muscle capacity and pain, when outdoor physical activity became difficult;

… I can’t go for my daily walks anymore. … . So now … . I make sure I still walk in the home because my muscles feel tight and I don’t want them to cease up. That causes even more pain to my body. (Nusrat, Older Female)

3.4.2. Use of medication

Among some older participants, medication was experienced as a useful adaptive mechanism to living with frailty by relieving their symptoms and pain, leading to improved wellbeing;

I take medication for my illnesses … I find that really helpful when I feel weak. It makes me feel a bit better. (Tanzeela, OP)

However, others felt that prolonged medication use had a physical impact on the body, due to the unpleasant symptoms they experienced;

I’ve taken so many tablets over the years … my digestive system has deteriorated […] I went to hospital once because the tablets had caused a bug in my stomach. (Rasheeda, Older Female)

3.4.3. Carers adjusting working life

Across many carer participants there was a belief that adjusting their working lives around caring for their parents was necessary for adapting to living with frailty. One individual felt their experience of modifying working hours to working as and when possible allowed the flexibility to provide care for their parents as and when needed;

I was self-employed full time, so now I’ve had to change around that and I’ll work when I can work … You know, you change your own lifestyle, where you’ve got to work around your parents … (Mohammed, Male carer)

3.4.4. Utilising siblings and family support

Some carer participants described their experiences of coordinating schedules with their siblings as ensuring their frail parent received consistent and reliable support. In doing so, they felt they were able to establish a structured shared parent care arrangement that met the needs of their parent;

… when I’m working the other brothers or sisters will take over the role. So, it will get spread out quite evenly … As long as the parents get looked after. (Maj, Male Carer)

Older female participants felt that receiving support with daily chores from daughters and daughter in laws across the week enabled them to adapt to living with frailty by allowing them to navigate their daily lives with greater ease and comfort;

My daughter in law will bring a cooked meal for us … she does that almost every day. And housework, … daughters come on the weekend, they will clean my bedroom, make my bed sheets, or cook … So, a lot of times my daughters do the household chores for me … It helps a lot. (Shameem, Older Female)

3.4.5. Religion as a coping strategy

Some older participants reported how using prayer to manage frailty helped distract them from their condition through their belief that religion increased emotional wellbeing, and individuals would receive support from God;

You know what helps me is my religion. Islam is very important for me so if I keep praying and focusing on my religion that is the support I get from God. (OP)

Some male carers experienced caregiving as a religious privilege which they believed led to showering of blessings from God. This helped them to cope with caring for a relative with frailty;

… me being a Muslim right, I believe …  God has not blessed everyone to do this … And I think that God chose me to you know, look after me mum. I would say actually that I’m privileged to be able to do it! (Mohammed, Male Carer)

4. Discussion

This is the first exploratory study to explore the lived experiences and how these influenced perceptions of frailty among South Asian families living with frailty in England. Findings demonstrate that South Asian people perceived frailty to be a natural part of the ageing process which caused degeneration of the mind and body. They also believed causal factors of frailty included lifestyle and previous employment, and that frailty was God ordained. Frailty also had a profound impact on the lives of both South Asian older people and family carers through loss of normality, independence and social relationships, causing negative emotions. However, South Asian families adapted to living with frailty by adjusting to their home environment, rearranging carer working lives around care provision, using prescribed medication, drawing on family support and using religion as a coping strategy.

Findings from this study reflect previous literature around the wider UK population’s perceptions of frailty (Durepos et al., 2022). Similar to the general population (Warmoth et al., 2016), South Asian people experienced physical and cognitive decline and perceived this to be an inevitable consequence of ageing, leading to frailty. This resonates with broader literature which suggests that ethnic minority communities often view symptoms of health conditions (such as dementia) as being synonymous with old age (Blakemore et al., 2018; Johl et al., 2016) due to a lack of awareness of the condition (Hossain & Khan, 2019; Parveen et al., 2017). South Asian peoples’ reports of feeling judged by others also support previous research that found that older people with frailty from the general population also felt judged and experienced stigma, as they were negatively compared to those deemed to be ‘ageing successfully’ (Nicholson et al., 2012) and undervalued members of society (Shafiq et al., 2023; Warmoth et al., 2016). This indicates that frailty is seen in opposition to successful ageing (Parish et al., 2019). Furthermore, wider studies also report that living with health conditions is associated with stigma and shame for South Asian people due to the belief that deteriorating physical and cognitive health can reduce an individual’s social standing within their broader community and wider society (Giebel et al., 2015; Lawrence et al., 2011; Mukadam et al., 2011). This demonstrates that similar to other populations, these stigmatising views may cause older frail adults to actively resist the frailty label (Fillit & Butler, 2009; Puts et al., 2009; Warmoth et al., 2016), deterring them from accessing frailty support services. They may alternatively adopt a ‘frailty identity’, which is associated with reduced social participation, decline in health, and beliefs that little can be done to reverse or delay frailty (Warmoth et al., 2016). To address this, an educational intervention for South Asian families may reduce the stigma attached to frailty and improve attitudes towards South Asian people living with frailty by dispelling myths. This would encourage people to access support services in a timelier manner, leading to a better quality of life.

South Asian families’ beliefs of pre-disposing factors of frailty align with the broader literature which shows that South Asian communities possess good comprehension of the link between lifestyle and disease orientation (Patel et al., 2017; Ramaswamy et al., 2020), however such knowledge does not always lead to increased access to frailty services (Fowokan et al., 2020). This may be due to barriers such as cultural norms (Patel et al., 2012), but also beliefs that they can implement lifestyle changes to reduce frailty symptoms instead. The wider literature on South Asian communities and service access suggests that barriers to service access are beyond knowledge, and system-level barriers such as language barriers and a lack of culturally appropriate services are common.

This study also demonstrates that frailty was perceived to have been ordained by God. This adds further evidence to literature that perceptions and beliefs about the development and control of disease in this population are embedded in South Asian peoples’ meaning of a health condition, their illness experiences, coping responses/behaviour, and spiritual beliefs (Patel et al., 2015). This indicates that similar to many populations across the globe, South Asian people view frailty and aspects of ageing in terms of religious and spiritual beliefs, whereby individuals perceive the condition as uncontrollable (Parish et al., 2019); which may influence their decisions not to access frailty support services. It is therefore important to improve education around treatment and services available to manage symptoms of frailty for South Asian communities. It is possible that if frailty is viewed as preventable and further decline reducible, South Asian people may engage in frailty support and services which facilitate health behaviour change to alleviate or reduce the condition. By addressing the issue of fatalism through religious education, families may be more likely to understand potential causes and effects of frailty, which may in turn influence their decisions to access services to adapt healthy and preventive behaviours and reduce the effects of living with frailty.

Reflecting previous studies (Skilbeck et al., 2018), South Asian families also felt that frailty had a negative impact on their lives. However, a notable difference was the negative impact on family carers, not previously documented. This aligns with broader literature which suggests that South Asian carers experience higher levels of burden, anxiety, and depression when providing care for older family members living with a health condition (Parveen et al., 2013). South Asian carers have also been shown to sacrifice roles such as employment and socialising to accommodate the care needs of elderly family members, and the stress of care provision can negatively impact on their own social and family relationships (Qadir et al., 2013). This suggests that although family is deemed central to care and support provision for elders across South Asian communities (Victor et al., 2017), for carers there are psychological and emotional consequences of providing care for a frail family member. It is possible that by tailoring services to facilitate emotional, practical, and social support services for carers, they may be deemed more acceptable.

This study shows that South Asian people, similar to those from the wider population (Nicholson et al., 2013), adapted to living with frailty through various strategies. As suggested elsewhere (Johl et al., 2016), South Asian families utilise religion and spirituality as a strategy for coping with health conditions more than their general UK counterparts, with religion being regarded as a preferred form of treatment control for health conditions (Parveen et al., 2017). South Asian carers’ use of religious coping strategies in this study are also consistent with the use of religious coping by the wider minority ethnic community in the UK (Shafiq et al., 2021).

This study also found that some South Asian people felt they adapted to living with frailty through the use of medication. These findings align with broader studies which show that beliefs around the need for and efficacy of medication for health condition management is important for South Asian communities, although adherence can be influenced by concerns around side effects or medication toxicity (Jalal et al., 2019). This demonstrates that factors pertaining to having personal control over frailty may contribute to not accessing frailty support services in South Asian people. It is therefore important for health, social care and third sector providers to gain a deeper understanding of the specific social, spiritual, and psychological coping strategies used by this population for managing and living with frailty. It is possible that by doing so, interventions can be created which incorporate these strategies to design culturally appropriate support services which facilitate autonomy and wellbeing for South Asian families living with frailty in the UK.

4.1. Limitations

This study included a small number of Pakistani and Indian participants with no individuals of Bangladeshi background. It is therefore not illustrative of all South Asian communities across the UK due to differences in the cultural contexts and characteristics of this population. Also, recruitment was from services within a small region of the UK, causing potential for differences in perspectives of South Asian people not accessing services. Furthermore, although efforts were made to increase credibility and reduce risk of losing meaning during the process of translating two languages (Urdu and Punjabi) in this study, there remains a possibility that some meaning may have been lost during the translation process.

4.2. Conclusions and implications

This study highlights that understanding the lived experiences and how these influence perceptions of frailty in South Asian older people and their families is important to build and shape frailty support services. Health, social care, and third-sector service providers need to consider the individual meaning of frailty for this population in relation to their cultural context and religious beliefs, to understand their particular needs and integrate these when planning and delivering culturally tailored frailty care and support. There is also a need for the development of interventions which focus on improving education in South Asian families to reduce stigma around frailty and increase access to frailty support services.

Ethics statement

The study was conducted in accordance with the Declaration of Helsinki and was approved by an Institutional Review Board/Ethics Committee. See details under Methods.

Acknowledgements

The authors would like to thank all participants for taking part in this study.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research was funded by the National Institute for Health Research, Yorkshire and Humber Applied Research Collaborations NIHR200166. The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health and Social Care.