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Family and Community Role in the Provision of Informal Care for Older People Living with Chronic Life-limiting Illnesses in Rural Ghana

Published online by Cambridge University Press:  01 October 2025

Barbara Adonteng-Kissi*
Affiliation:
Faculty of Health, Southern Cross University, Gold Coast Airport, Bilinga, Australia
Obed Adonteng-Kissi
Affiliation:
School of Arts and Humanities, Social Work Discipline, Edith Cowan University, Bunbury, Australia
*
Corresponding author: Barbara Adonteng-Kissi; Email: babkissi@yahoo.com.au
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Abstract

Informal care for older people living with chronic life-limiting illnesses is associated with difficulties. The informal care system built around generational values and cultural norms is steadily weakening in rural Ghana because of economic challenges, migration, urbanisation, and changing family structure. In responding to this knowledge gap, we aimed to ascertain how the immediate family, extended family and community support impact on mechanisms underlying provision of informal care for older people living with chronic life-limiting illnesses. Ethnographic interviews were conducted amongst fifteen older people; fifteen informal caregivers; ten health care professionals, after participatory observations during six months of fieldwork utilised to gather the needed data. This study is guided by altruism, empathy, responsibility, self-interest, and social values theories, which provide a very significant structure to understand care relations in rural Ghana. While we find that informal care is sustained by cultural values, it is experiencing financial and human resource challenges.

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Copyright
© The Author(s), 2025. Published by Cambridge University Press in association with Social Policy Association

Introduction

Chronic illnesses have the possibility of negatively impacting the quality of life of older people living with chronic conditions. Chronic life-limiting illnesses are advanced or progressive health conditions that are terminal, eventually, resulting in death (George et al., Reference George, Matsoukas, McFarland, Bowers, Doherty, Kwon, Atkinson, Kozlov, Saraiya, Prigerson and Breitbart2022). Chronic illnesses include periodic health issues and ongoing deterioration in functional capabilities, with related hospital stays, making older people more dependent in the context of their psychosocial needs (Amu et al., Reference Amu, Eugene Kofuor, Tarkang and Kumi-Kyereme2021). Older people have varied demographic, environmental, and sociocultural contexts and depend on many social support connections to cope with the difficulties connected with aging (Amankwaa and Ampomah, Reference Amankwaa and Ampomah2025; Braimah and Rosenberg, Reference Braimah and Rosenberg2021). In fulfilling the norms of Ghanaian tradition of reciprocity, families play a critical role in long-term domiciliary caring of older people living with chronic life limiting illnesses (Kwabena-Adade, Reference Kwabena-Adade2023). Globally, about three-fifths of older people living with chronic life-limiting illnesses are cared for by immediate family, extended family and through the support of the community who are largely women (Mobolaji, Reference Mobolaji2024). Additionally, cultural/gender expectations seems to shape the arrangements of informal caregiving (Agyemang-Duah et al., Reference Agyemang-Duah, Michael, Peprah, Adei and Jacob2024). While some men are gradually assuming the roles of caregivers, women seem to form the greatest percentage of informal caregivers around the globe (Asuquo and Akpan-Idiok, Reference Asuquo, Akpan-Idiok, Cascella and Stones2021). The reason for this disproportionate engagement of women in caregiving is gender stereotypes that construct caregiving as ‘women issue’ and consider caregiving as a ‘feminine type’ of work (Dery et al., Reference Dery, Duorinaah and Bonye2025). However, this caregiving arrangement offered by the immediate family, extended family, and the community is presently experiencing general changes owing to many factors such as changing family structures, economic challenges, migration, and urbanisation (Nkansah et al., Reference Nkansah, Awuviry-Newton, Moses, Newton and Boateng2021; Agyemang-Duah and Rosenberg, Reference Agyemang-Duah and Rosenberg2024).

The study area under investigation is Gomoa West district, which has a population of 153,570 with the male to female ratio being 44.7 per cent to 55.3 per cent (Ayin and Ayetey, Reference Ayin and Ayetey2017). The percentage of the population of older people (sixty years and above) in the Gomoa West District is 7.5 per cent (GSS, 2014). The district is associated with substantial socio-cultural, economic, and environmental disparities. Rural areas experience considerable health inequalities due to limited access to healthcare, socioeconomic constraints, lack of resources, and geographic isolation (Asante et al., Reference Asante2022; Adonteng-Kissi and Adonteng-Kissi, Reference Adonteng-Kissi and Adonteng-Kissi2025). In rural Ghana, older people depend far more on informal care offered by the family than the formal care system (Dovie, Reference Dovie2019). Therefore, applying a rural lens contributes to the contextualisation of the complex and developing experiences of older people (Adonteng-Kissi, Reference Adonteng-Kissi2020) and those of their families, when chronic life-limiting illnesses is a factor. This paper poses the following research question:

How do the immediate family, extended family, and community support impact on mechanisms underlying the provision of informal care for older people living with chronic life-limiting illnesses in rural Ghana?

National health insurance policy in Ghana

In August 2003, the government of Ghana passed the National Health Insurance (NHIS) Act (Act 650) (NHIS, 2008). It is a publicly financed programme planned to offer fair access to quality healthcare services for people of Ghana (NHIA, 2022). The NHIS enables Ghanaians between the ages of eighteen to seventy to register in premium-focused healthcare services with subsidies. In agreement with its aim to make primary healthcare affordable, the NHIS offers free registration for vulnerable people, comprising people above the age of seventy, pregnant women, children below the age of eighteen, prisoners, indigents, the homeless, and people experiencing mental illnesses (Acquah-Hagan et al., Reference Acquah-Hagan, Boateng, Appiah-Brempong, Twum, Atta and Agyei-Baffour2021). Notwithstanding these attempts, registration rates is low, with about 60 per cent of the population not registered in the NHIS, involving a substantial percentage of older people aged sixty years and older (Antabe et al., Reference Antabe, Anfaara, Sano and Amoak2025). A potential reason for the low registration rate is that the existing policy focus of the NHIS on only financial and social vulnerability can be exclusionary as it cannot be covering other possibly substantial mechanism of vulnerability such as food security (Amoak et al., Reference Amoak, Joseph, Agyemang-Duah, Sano, Antabe and Dassah2024). Given the widespread food insecurity, with projections indicating that more than one-third of older people in Ghana face food insecurity (Acheampong et al., Reference Acheampong, Obeng, Opoku, Brobbey and Sakyiamah2022), this group can be prone to distinct difficulties to NHIS registration. The inadequate resources available to food-insecure older people usually leads to trade-offs and challenging choices, such as selecting between buying food and paying for healthcare, transport, or other requirements. Investigation into the older people exemption policy in Ghana showed that less 50 per cent of older people benefit from the exemption, as some people had to pay for the premium notwithstanding their eligibility or did not at all register, particularly in the rural areas (Kwarteng et al., Reference Kwarteng, Akazili, Welaga, Dalinjong, Kwaku, Sarpong, Sarpong, Arthur, Bangha, Goudge and Sankoh2019). This indicates that there can be more elements beyond economic vulnerability that motivate older people NHIS registration choices.

Theoretical perspectives

Theoretical frameworks in which informal caregiving have been expressed are composed of empathy, altruism, egoism, responsibility, and reflected in Empathy Induced Altruism Hypothesis (Batson, Reference Batson2014). This hypothesis suggests that motivation can be generated by empathic emotion and therefore, empathetic responses of the caregivers. Further, the Self-Interest Model (Greenberg, Reference Greenberg1990) indicates that informal caregivers are interested in their own contextual outcomes in assuming the caregiving role. The Reciprocal Altruism Model (Barber, Reference Barber2010) provides a biological theory asserting that caregiving activities are ‘reciprocally altruistic’ as preferred by natural selection since in the long run they can help the caregiver. Kin Selection Model (Humphrey, Reference Humphrey1997) includes supporting relatives for the reproduction and survival of the person and closest kin. The Normative Approach (Homans, Reference Homans1974) provides a broad effort to explain caregiver motivations in the context of being directed by societal standards. The Commitment Theory (Johnson et al., Reference Johnson, Caughlin and Huston1999) acknowledges external and internal elements, shaping caregiver commitment to supporting older people, particularly with an acknowledgement of psychological elements to contribute to commitment. The Self-determination Theory (Deci and Ryan, Reference Deci and Ryan2012) differentiates between extrinsic and intrinsic motivations via the examining intrinsic psychological needs. As may be seen across the many theories, some of them welcome motivations of caregiving by pointing to the caregiver ‘getting something back’ (Adams, Reference Adams1965; Pritchard, Reference Pritchard1969), while the others place more weight on the caregiver ‘giving something back’ (Homans, Reference Homans1974; Batson, Reference Batson2014).

Informal caregiving is mainly performed by women because of a blend of societal expectations embedded in gender norms and roles. These factors generally result in women being viewed as natural caregivers in families and societies. Feminist scholars emphasise some fundamental variations between family and non-family spheres in the level and nature of ‘caregiving’ in social relations (Murray, Reference Murray2008). For instance, women’s ethics utilises criteria such as inclusion and feeling for others, caregiving, concern, the wellbeing of others (Broughton, Reference Broughton1983). A leading feminist assumption has been that the variations are basic to being female or male. Nonetheless, it is likely they develop from the different experiences of the sexes, women are more deeply engaged in the family space. A unique characteristic of the family sphere is that the leading approaches of managing it are based on nurturing and caregiving. Historically, women have shouldered the primary responsibility to nurture within the family space, and we may become informed about this part of family life through their experience. To this end, we explore how the immediate family, extended family and community support impact on mechanisms underlying the provision of informal care for older people living with chronic life-limiting illnesses in rural Ghana.

Methods

This methods section examines the ethical consideration, study design, detailed ethnographic interviews with participants, how data were gathered utilising this method and the techniques applied to analyse these data, and trustworthiness of the study design.

Ethics

We obtained ethics approval from the Griffith University Human Ethics Committee with reference number (GU Ref No: 2018/423) and Korle-Bu Teaching Hospital’s (KBTH) institutional review board with reference number (KBTH-STC/IRB/00093/2018) to undertake ethnographic interviews and participatory observations. In respecting the principles of the University Ethics Committee, we respected cultural differences and guaranteed the rights of older people before, during, and after the study. We asked participants to sign consent forms and gave them participant information statements before engaging participants. All steps taken by us before, during, and after the research conformed to the highest ethical standards.

Research design

The research is planned in qualitative research approach by specifically using ethnographic interview techniques after participatory observations to gather the required data during six months of fieldwork. The purpose of the ethnographic interviews was to get a deeper understanding of the emerging issues during the observations. We drafted an interview schedule based on the patterns and possible themes that emerged from the analysis and field notes made during the observations.

Participants

Ethnographic techniques were undertaken through immersive fieldwork in natural settings, mainly using participant observations to examine the natural caregiving environment of older people and their caregivers to place into context the empirical findings, and to allow the issue to be illuminated. We observed participants for a period of six months while intermittently undertaking the semi-structured interviews to produce practical representations of the reality of caregiving on the ground. The composition of the households largely reflected the sense of order in the caregiving environment. We conducted some interviews in homes of older people and the Palliative Care Clinic of the Korle-Bu Teaching Hospital (KBTH), and St. Luke Catholic Hospital (SLCH) in Apam. The target population of the research involved older people living with chronic life-limiting illnesses and those involved in their care, such as family caregivers and health care professionals from the Palliative Care Clinic of KBTH and SLCH in Apam who support older people to handle their symptoms. These medical facilities focus on multiple morbidity patients and require regular medical inpatient attention. These medical facilities accept direct referrals from other small clinics in the community. Most of the older people have been treated in the Palliative Care Clinic of the KBTH, and the SLCH in Apam many times in view of their multiple chronic conditions. These medical facilities are expected to run diagnostic tests, manage and treat actual illnesses, and plan the needs of future care in partnership with other healthcare providers such as physicians, nurses, and enrolled nurses, in the healthcare centres. While the inclusion criteria for sample selection are aged sixty years or older, the average age of older people living in a Gomoa West District who participated in this study was seventy-six years. Older people needed to be diagnosed with at least one chronic life-limiting illness, confirmed by the older person or the family caregiver, recognised by the palliative clinic as being medically/socially dependent, receiving some form of informal care, adequately strong to be involved in the research, and speaks English or Akan.

Data generation activities

The interviews schedule for the older people comprised twenty-one questions. Additionally, the interview schedule for the informal caregivers was made up of eighteen questions; and the interview schedule for the healthcare professionals comprised thirteen questions exploring the impact of the immediate family, extended family, and community support on mechanisms underlying the delivery of informal care for older people living with chronic life-limiting illnesses in rural Ghana and each interview lasted between thirty and ninety min. We undertook training in qualitative research methods and ethnographic interview techniques. We used purposive sampling to select all study participants to better match the sample to the aims of our study. We organised information sessions for the participants. A total of sixty-six participants (older people, caregivers, and healthcare professionals) expressed interest in participating in our study and fifteen older people; fifteen informal caregivers; five health care professionals from the Palliative Care Clinic of KBTH and five health care professionals from SLCH in Apam met our eligibility criteria and were scheduled for ethnographic interviews (forty) to reach a point of saturation. No relationship was established between us and participants prior to the research. The ethnographic interviews were conducted in different settings including the Palliative Care Clinic of KBTH, and SLCH in Apam the offices of the professionals and older people’s own homes. Most of these ethnographic interview contexts were chosen at each participant’s convenience.

Data analysis

We analysed the ethnographic interview data using thematic analysis, a process of recognising themes or patterns within ethnographic interview data. We read the transcripts to enhance our understanding of the entire data and get beneficial understanding. Transcript classification was used during this process to allow us to cover proper data related to the research question. We used open coding to generate a preliminary set of codes following our reading and re-reading of the transcripts. We used open coding because we did not have pre-set codes and generated the codes as we read through the transcripts. Examples of our codes are ‘my family care for me’, ‘my neighbours support me’, and ‘my church support me’. We examined the initial codes to identify original patterns and to generate expressive themes. We reread and analysed recurrently the themes to check that they articulated the responses of the interviewee. We presented the findings of our analysis and cited from the answers of interviewees verbatim for the purpose of demonstration.

Trustworthiness

Our qualifications, background, experience, and credibility are especially critical in qualitative study as we (investigators) are the key instrument of data collection and analysis. Additionally, we improved interviewer reliability by implementing two pre-pilot ethnographic interviews to get experience and the essential skills. Further, we dealt with the issue of reliability in terms of equipment utilised in the interview. We used a tape recorder to record all ethnographic interviews, consequently, improving reliability. We tried to overcome research bias by assuming a neutral stance and declining to provide our own views during the data collection process. We triangulated our data by applying different sources to confirm the emerging findings.

Presentation of findings

In this section, we include analysis of how the immediate family, extended family, and community support impact on mechanisms underlying the provision of informal care for older people living with chronic life-limiting illnesses as presented by fifteen older people (OP) living with chronic life-limiting illnesses; fifteen informal caregivers (IC); and ten healthcare professionals (HP) in rural Ghana.

Perspectives on the extent of life-limiting conditions

The healthcare participants described the extent of life-limiting illnesses among older people in rural Ghana. For instance, all the healthcare professionals pointed out that most older people living in the rural area under investigation experience at least one chronic health condition, and a significant proportion of them face at least three or more chronic life-limiting condition(s). One of the healthcare participants echoed:

The most common chronic condition among older people are Arthritis, musculoskeletal illnesses and chronic pains (HP One).

Other chronic conditions that run through all the interviews with the healthcare professionals were ‘cardiovascular diseases’, ‘degenerative neurological conditions’, ‘chronic obstructive pulmonary diseases (COPD)’, ‘dementia’, ‘chronic kidney diseases’, and ‘cancers.’ Another healthcare professional made this statement:

These chronic conditions impact on older people’s quality of life (HP Two).

The healthcare professionals and caregivers gave their subjective explanation of what sustains caregiving, which is mainly establishing and sustaining closer relationships with children, grandchildren, cousins, uncles, and aunties. The older people reinforced the importance of reciprocity to the survival and sustenance of the informal care system. Participants suggested that caregivers help manage the health of older people providing informal support through accessing information on healthcare services and to cover the generally increasing healthcare costs associated with older people’s chronic conditions. Meanwhile, all fifteen participants were of the view that older people with chronic conditions need palliative care. One of the healthcare participants made this statement:

Palliative care may be provided at any stage of the illness and in different contexts (HP Three).

For instance, eight out of the ten healthcare professionals suggested that palliative care is designed independently to include ‘practical support’, ‘symptom management’, and ‘referrals to other services.’ The above phrases emphasise dignity and comfort for older people and support for their caregivers.

Immediate family support

The participants explained the composition of older people’s immediate family. For instance, the participant pointed to family members such as ‘brothers’, ‘sisters’, ‘adult children’, ‘grandchildren’, and ‘spouses’ as the most common support groups. Meanwhile, all forty participants were of the view that immediate family members are essential in caregiving roles, usually offering considerable care to loved ones. Ten out of the fifteen caregivers suggested that their relationship with older people may present substantial difficulties and tensions within immediate family. Although informal caregiver is more expected to face increased stress, they report a higher sense of obligation to older people, which may facilitate higher tolerance for caregiving burdens. The relevance of the immediate family relationship to the informal care system dominated the informal caregivers’ data set. Words that run through all interviews with the older people were the duty to reciprocate caregiving with ‘love’ and ‘respect’. More than half of the informal caregivers perceived that the traditional caregiving as the backbone of long-term caregiving. The phrase, ‘caregivers commit to their social role expectation’ appeared in ten out of the fifteen caregivers’ interviews. The data set indicated agreement between older people and their caregivers that adult children and grandchildren need to reciprocate the care they have received from their ageing parents and grandparents. One of the caregivers made this statement:

We must reciprocate the kind gesture of our parents by caring for them (IC One).

Although the older people perceived caregiving as an intergenerational activity that seeks to care for them, the narration of their experiences suggested a sense of disappointment and the perception that the system is waning. For instance, eleven out of the fifteen caregivers’ participants made statements such as ‘many young people are migrating to the cities’, ‘informal caregiving system is weakening’, and ‘economic challenges are impacting on the informal care system’. The statement recognising the interaction of social expectations, cultural norms, personal relationships, and economic support appeared in thirteen out of the fifteen older people’s data sets. This suggests that the caregivers acknowledge that the survival of informal care system depends on these cultural values. One of the older people explained:

The more adult children you have, the higher the available support (OP One).

The above quote attempted to explain how large family size can support the informal care system. These cultural values and skills such as empathy, compassion, and care are reflected in thirteen of the fifteen interviews from the informal caregivers’ data set. The older people’s responses to the concept of cohabitating in a compound house consistently highlighted need to have a stronger capacity and flexibility to care for older people. More than half of the older people suggested that capacity to care is the ‘centrality of informal caregiving’. For example, one participant said:

I live with all my adult children on the same compound so there’s division of the caregiving tasks (OP Two).

Six out of the ten healthcare professionals explained that the effectiveness of shared responsibility depends on whether a family member is available and willing to help. Phrases that run through all the interviews with the caregivers were ‘my mother used to care for my grandmother’, ‘I’m caring for my mum so that my own children will care for me’, ‘I’m caring for my grandma in addition to caring for my own children’. The data set suggested agreement between the healthcare professionals and caregivers that the informal care system is gendered work. One of the healthcare professionals said:

Caregiving is expected to be offered by women (HP Four).

The quote above suggests that the informal care system positions women to deliver informal care that addresses the individual needs of the older people rather than ‘one size fit all’. Ten out of fifteen older people believed it is their daughters and granddaughters’ responsibility to care for them. For example, a healthcare professional suggested:

Most caregivers are likely to be adult daughters, granddaughters, and sisters (HP Five).

The relevance of the above quote is that men are unlikely to care for their older parents living with chronic life-limiting conditions. The gendered nature of informal caregiving cannot be overemphasised as women disproportionately offer unpaid care for older people, particularly their parents, and older people living with chronic life-limiting illnesses. A caregiver echoed:

I do all the work for my mum because I’m the only female among my siblings (IC Two).

Most of the participants suggested the migration of men to the cities is the reason women dominate the informal caregiving. One of the caregivers discussed how men’s financial contribution is critical to the sustenance of the informal care system. One of the caregivers said this:

Men contribute money or delegate their responsibility to their wives (IC Three).

The phrase, ‘some daughters-in-law care for their mothers-in-law’ appeared in ten out of the fifteen caregivers’ interviews. The relevance of in-laws supporting their older mothers-in-law dominated the caregivers’ data set. While some caregivers share responsibility, others do not. A caregiver confirmed:

I do everything because my brothers don’t contribute anything (IC Four).

Six out of the ten healthcare professionals believed that when one person performs all the caregiving duties, it becomes a burden. The statement, ‘some caregivers abandon older people when they can’t do it all alone’ appeared in seven out of the ten healthcare professionals’ interviews. A doctor [participant] observed:

There have been situations where older people have been neglected (HP Six).

All the ten healthcare professionals suggested that the caregiving may not necessarily be effective system because it depends on whether family members are available and willing to help. Further, eleven out of the fifteen caregivers suggested that their relatives send money for the upkeep of their older people. Phrase that run through ten out of the fifteen interviews with the caregivers is ‘they pay for the medical bills’.

Extended family support

The participants indicated that the extended family comprises distant relatives, such as grandchildren, cousins, uncles, and aunties as their support is primarily about physical and socio-emotional care by describing how they provide both practical and emotional support. Further, the participants suggested that the extended family’s willingness to offer care depended on factors such as cultural beliefs, cultural values, ethnocultural context of caregiving role, spiritual beliefs, and gendered norms and roles. For instance, the three participant groups explained support such as ‘healthcare needs’, and ‘emotional needs’, contribute to older people’s quality of life. Participants described some of the extended family support as ‘washing’, ‘cleaning’, ‘cooking’, ‘heating’, ‘laundry’, and compound work. All the ten healthcare professionals explained that caregivers experience financial challenges, physical exhaustion, social isolation, and juggle multiple roles which impact on the survival of the informal care system. For instance, one of the caregivers recounted:

It is difficult to get someone from the extended family to care for older people (IC Five).

The challenges of the informal care system dominated the informal caregivers’ data set. Phrases that run through all the interviews with the caregivers were ‘the extended family used to nominate someone to be the primary caregiver’ and ‘men who couldn’t provide care nominated their wives’. A caregiver explained:

My husband asked me to care for my mother-law (IC Six).

The phrase, ‘the informal care system is unreliable’ appeared in ten out of the fifteen older people’s interviews. For instance, seven out of the ten healthcare professionals made statements such as ‘relying on unpaid care from extended family members is experiencing serious challenges’ and ‘there is the weakening of the informal caregiving to support older people needing care’. The data set showed consensus among the three participant groups that the weakening of this system has implications for both caregivers and older people, possibly affecting their health, welfare, and access to essential support.

Neighbourhood support

The participants provided their subjective accounts of the support provided by the neighbourhood acquittances to older people. The caregivers’ accounts about support provided by the neighbourhood acquittances to older people complements that of the older people. However, the caregivers provided a somewhat detailed information of the support offered by the neighbourhood acquittances, recognising its criticality to the informal care system. The statement recognising the value of older people’s interaction with the community appeared in ten out of the fifteen older people’s data sets. This suggests that the older people and their caregivers acknowledge that older people’s interaction with the community is beneficial. For instance, the statement, ‘we receive money and other gifts from our neighbours through our interaction’ and ‘people express their love and respect to us with gifts’ appeared in twelve out of the fifteen older people’s interviews. One of the older people said:

Neighbours chat with me when I sit in front of my house. Some people offer financial help (OP Three).

The data set showed consensus among the three participant groups that older people receive support from the neighbourhood. The significance of the support reinforces the collectivist nature of the people. For instance, phrases that run through most interviews with the older people were ‘our community leverage the strong bond’, ‘we still have community ties’, and ‘the people cherish older people’. One of the older people reiterated:

Support from neighbours is common here (OP Four).

The significance of the above quote is that the informal care system get support from the neighbourhood. Phrases such as ‘my mother’s friends gave her money’, and ‘the community help in my mum’s upkeep’ appeared in five out of the fifteen caregivers’ interviews. The data set demonstrated somewhat consensus among the three participant groups that neighbourhood support occurs in the community.

Church community/philanthropic groups

Most participants indicated that the church community groups play a part in supporting older people. For example, ten out of the fifteen older people suggested that they receive a range of services such as ‘practical support’, ‘direct economic assistance’, ‘social connection’ to fill the gaps in the informal care system. The significance of the church community support dominated the caregivers’ data set. The data set demonstrated agreement between older people and their caregivers that the church community usually aim at improving the welfare of older people. Most older people and their caregivers indicated that they are members of the church. A caregiver explained:

The church brings me money and motivates me during challenging times (IC Seven).

The quote above shows that most churches have a welfare system that supports older people. For instance, the older people and their caregivers pointed to food items such as ‘maize’, ‘rice’, ‘oil’, ‘eggs’, ‘fish’, and ‘clothes’ to describe the items older people receive from the community.

Discussions

This section discusses how the immediate family, extended family, and community support impact on mechanisms underlying the provision of informal care for older people living with chronic life-limiting illnesses in rural Ghana in the context of five themes: perspectives on informal care for older people, immediate family, extended family, community support, and burden of care as a gendered activity.

Perspectives on informal care for older people

The overarching role performed in informal care is that caregivers appear to model their roles in managing chronic illnesses after professional nurses. Family caregivers ascribed their roles in pain and medication management routines to the nursing role in the home setting (Kusi et al. Reference Kusi, Boamah Mensah, Boamah Mensah, Dzomeku, Apiribu and Duodu2020). The caregiver role supports complex self-management for older people living with chronic illnesses. Caregivers can especially offer a different form of informal caregiving that can remove excessive delays in receipt and/or avoiding healthcare utilisation. Establishing and sustaining closer relationship through the life course with relevant others such as children, grandchildren, cousins, uncles, and aunties might offer a ‘buffering effect’ for health and can improve the prospect of accessing informal support through information on healthcare services and to cover the usually rising healthcare costs associated with older people. This finding reinforces that of Gyasi et al. (Reference Gyasi, Phillips and Amoah2020) that the family’s economic situation and regular interaction between older people and their relatives relate with healthcare services utilisation and psychosocial wellbeing of older people.

Immediate family

This paper argues that caregiving is motivated by the Self-Interest Model and Empathy Induced Altruism Hypothesis as well as the sociobiological or biological motivations to offer care as explained largely in the Kin Selection Model and Reciprocal Altruism Model. While there are theoretical intersections between these constructs, it needs to be emphasised that motivations to offer care appear to be in our opinion a more fundamental concept than willingness to offer care as put forward by some participants. The immediate family is the most active care group, with specific emphasis on nuclear family care. Although socio-cultural values of role expectations in shared family responsibility and contributions exists in immediate family care, it is not shared equally. While both older people and their informal caregivers take advantage of the socio-cultural reciprocity in social support, informal caregivers particularly take advantage of cultural obligation to share traditional care responsibilities. Our findings further suggested gender inequalities in informal caregiving experiences. In all contexts apart from undertaking most of the instrumental activities of daily living (IADL), women seem worse off. Women largely continue to be confined to domestic settings, undertaking different domestic tasks such as cleaning, cooking, and caregiving. Additionally, they were discriminated against more than their men counterparts. This is consistent with the findings of Sossou and Yogtiba (Reference Sossou and Yogtiba2015) that the circumstances of female caregivers in Ghana is associated with abuse and poverty. Interpretations of these inequalities may be seen in low socio-economic status of women and oppressive cultural practices that assign domestic roles to women in rural Ghana.

Extended family

The ideas relating to social and cultural determinants of motives to offer care are consistent with the Normative Approach (Homans, Reference Homans1974) which explains the way caregiver motives are directed by social norms. Important factors impacting caregivers’ willingness within the extended family to care for older people included beliefs, cultural values comprising the ethnocultural context of caregiving role; spiritual and cultural beliefs; values, norms, and socialisation, which explicitly emphasise the regulation of caregiving commitments; social norms and seeming expectations such as gendered norms and roles. We further highlight the significance of ‘macro’ activities within the framework of caregiving motivation and willingness to care. It aligns with a broad integrative framework of informal care (Revenson et al., Reference Revenson2016), which suggest examining the ‘caregiving process’ in a flexible way. Our paper produces such a founding structure that classifies possible ‘micro’ and ‘macro’ predictors of motives and willingness to offer care, with macro level relating to culture – and social-dependent factors, which usually offer context to ‘micro’ psychological elements, for example, perceived commitment to care. The complex nature of determining caregiving motivations is highlighted, thus, there are many elements that influence caregiving motivations and willingness. We consider the ethnocultural and social motivations in informal caregiving within the extended family. We extend the viewpoints of Schulz et al. (Reference Schulz, Schulz, Biegel, Morycz, Visintainer, Light and BD1989) by framing our understanding of macro cultural norms and the way an individual reacts to seeming expectations. We argue that there are psychological motivations, and distinct explanations for caregiving that have been partly available in the theoretical perspectives. There are general expectations of reimbursement, self-esteem, social approval, conformity to social norms, obligation to offer care, and avoidance of guilt. The motivations emphasised in our findings seem not to be consistent with the primary dichotomy of intrinsic and extrinsic motivates which emerge from the Self-determination Theory (Deci and Ryan, Reference Deci and Ryan2012) and therefore, we argue against a general and basic approach to examining motivations to care.

Community support

We contend that non-family members were usually included in offering informal care as against the concept of the survival of the family gene pool (Schulze et al., Reference Schulze, Lubatkin and Dino2002). It is not unexpected as helping behaviour is assumed to be designed not absolutely through biological instincts, but also through human learning and experiences whereby cultural, and social factors play an important role (Hoffman, Reference Hoffman1978). There are three perspectives on caregiving motivations pertaining to: social biology, social norms, and psychological motives (Schulze et al., Reference Schulze, Lubatkin and Dino2002). Neighbourhood and religious support are used to supplement immediate family care, but their inconsistency in supply further put the responsibility to provide care on the older person’s nuclear family (Apt, Reference Apt2001; Adonteng-Kissi et al., Reference Adonteng-Kissi, Moyle and Grealish2020). However, caregiving from older people’s neighbourhood acquaintances is unpredictable. While neighbours may offer support, the inconsistency of neighbourly support suggests that by employing innovative perspectives on neighbourhood cohesion, maximum support can be harnessed from older people’s neighbours (Nkansah et al., Reference Nkansah, Awuviry-Newton, Moses, Newton and Boateng2021).

Burden of care as a gendered activity

The valorisation of family-based and reciprocally or altruistically driven care, offered principally by women, is obvious in our data. Participants’ principles of gendered, family responsibility to care were echoed in caregivers’ daily social engagements in their home setting. Further, it is strengthened by daily conditions – most older people have no choice but to depend on voluntary family members as informal caregivers. Women in the family are expected by society to offer care without remuneration. Amongst our participants, accepted ‘asking rules’ within the informal caregiving system (Bowlby and McKie, Reference Bowlby and McKie2019) were substantially gendered. Freeman (Reference Freeman2023) indicates that competent caregivers are presumed to be women relatives, with a responsibility and a disposition to care generously. In the African context, families are positioned uniquely to care for older people (Aboderin, Reference Aboderin2019). The gaps in older people’s care are because of the dilution of cultural values (Twum-Danso Imoh, Reference Twum-Danso Imoh2022).

Policy implications

We highlight how policy and service delivery can influence motivations and willingness to deliver care. A reassessment of the exemption policies might possibly enhance the inclusivity of the scheme, aiming at families facing critical food insecurity and not just those living under the national poverty line. Additionally, public sensitisation and awareness campaigns on the critically of quality healthcare and wellbeing may promote higher participation in valuable health-seeking behaviours, such as registering and keeping membership of the NHIS. Lastly, substantial inequality in NHIS registration among older people founded on wealth status highlights the importance of dealing with structural barriers and executing the National Ageing Policy to ensure the wellbeing of older people. Urgent action is required to execute the National Ageing policy, aiming at initiatives associated with the United Nations Decade of Healthy Ageing (2021–2030), which is planned to enhance the lives of older people, their families, and communities. Government support for national and local programs planned to promote the health and wellbeing of older people through the removal of economic and food insecurity barriers to NHIS registration is critical for promoting universal health coverage (UHC).

Limitations of the study

While this study was undertaken in a rural area in Ghana, the experiences and characteristics of older people living with chronic life-limiting illnesses and their caregivers reported in this work cannot be a representation of all older people and their caregivers in other rural areas in Ghana. While the interviews were separately undertaken, the presence of the other participants can have reduced the capacity of the other participants to freely express themselves. This can be a marginalising effect and influence the results of the study. Presenting the findings together can influence participants’ confidentiality. Data was gathered both in English and Akan languages. The data in Akan language were translated into English language during transcription. During translation, there is the possibility of loss of meanings in some words due to the differences in languages.

Conclusion

Historical traditional care and support still exist for older people in rural Ghana, irrespective of chronic illnesses, and it is sustained by shared cultural values in love, respect, appreciation, relationships, responsibility towards one another, reciprocity, and community engagements. We have tried to point out that motivations and willingness to care is unsatisfactorily and loosely conceptualised and under-researched in informal caregiving research. Motivations are complex and contrary to initial explanations of intrinsic and extrinsic motivations as incompatible we argue that they can coexistence.

Competing interests

We wish to submit an original research article entitled ‘Challenges of Older People Living with Chronic Life-limiting Illnesses and their Informal Caregivers in Rural Ghana’ for consideration by Social Policy and Society, and we wish to confirm that we have no conflicts of interest to disclose.

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