Support for older people living with chronic life-limiting illnesses in rural Ghana

Abstract

Summary

This research aims to address formal support needs of informal caregivers (ICs) in the context of long-term care of older people (OP) living with chronic life-limiting illnesses and examine the relationships of ICs of OP with formal support in rural Ghana. We undertook ethnographic interviews with 15 OP; 15 ICs; and 10 healthcare professionals (HPs) after participatory observations during 6 months of fieldwork. This was supported with daily field notes used to collect the needed data and purposively sampled across Gomoa West District in Ghana. The average age of participants was 76 years. Interviews were recorded and transcribed, using a thematic analysis procedure as the data analysis approach.

Findings

OP living with chronic life-limiting illnesses and their ICs identify and endorse information and education and skill training in planning and coordination as enablers of ICs to manage such OP's care. Meeting ICs’ educational needs such as health literacy, family conferencing and encouragement from HPs made information and education effective for ICs. Planning and coordinating care activities offer sufficient coverage for OP, provide follow-up support, and help caregivers to meet their multiple responsibilities which are sociocultural in nature.

Applications

In line with the empowerment approach, social workers and HPs need to be aware of their roles to empower and support caregivers. They need to build on caregivers’ strengths, negotiate common ground with caregivers, encourage caregivers to express themselves in their own language, and support caregivers to focus on social change.

Introduction

In the developing world, while informal carers play a critical role in meeting the needs of older people (OP) living with chronic life-limiting illnesses, they are ill-prepared to provide formal support services for them during care transitions. Informal caregivers (ICs) include family, spouses, friends, and neighbors who offer unpaid assistance to OP (Rocard & Llena-Nozal, 2022). Further, secondary caregivers offer extra support to the primary caregiver, ensuring continuous care and easing the burden of primary caregivers, and may be a family member, friend, or paid assistant (Gonçalves-Pereira et al., 2020). Care transition is the transfer of OP living with chronic life-limiting illnesses from one level of care to the other, including moving from the hospital to home setting or from acute care to rehabilitation, and includes ensuring coordination and continuity of care during this process (Pedrosa et al., 2022). Since OP have complex care needs, they usually need multifaceted treatment and care across varied contexts (Briggs et al., 2018). Therefore, there is the need to put in place formal support for ICs during these transitions to minimize disruption of their lives and maintain their quality of life. Further, it is important to strengthen the informal care and traditional social responsibility system (Banadinović et al., 2023). OP's experiences of poorer services are connected with poorer caregiver quality of life (Arthur, 2021).

Prior empirical evidence suggests that conditions of OP are caused by a complex relationship between structural and individual level factors (Oduro, 2024). The rapidly evolving socioeconomic structures in Ghana place an added layer of complexity on OP's conditions. Other critical elements that define OP's conditions are financial status (Braimah et al., 2023), existence of social security schemes (Gyasi et al., 2020), and rurality (Braimah & Rosenberg, 2021). The 2021 Ghana Population and Housing Census suggests that 6.5% or 1,991,736 of OP are 60 years and older (Ghana Statistical Services [GSS], 2021). This is an increase of nearly 10 times since 1960 and by 2050, it is estimated to be twofold (Ghana Statistical Services [GSS], 2021). Rural Ghana offers a practical and general framework to explore and explain OP's complex experiences (Adonteng-Kissi, 2020), hence warranting a rural lens in this investigation. While there is evidence of rural investigation into ageing in the developed world, there is not much engagement with the subdiscipline by investigators in sub-Saharan Africa, especially Ghana (Braimah & Rosenberg, 2021). In a setting connected with substantial cultural, socioeconomic, and environmental inequalities, applying a rural perspective contributes to contextualization of the complex and emerging experiences of OP. The population of Ghana's Gomoa West District, which is the rural area under investigation, is 153,570 with a male to female ratio of 44.7%: 55.3% (Ayin & Ayetey, 2017). The percentage of the population who are OP (60 years and older) in the district is 7.5% (Ghana Statistical Services [GSS], 2014). Notwithstanding the role of rurality in constructing the daily experiences of OP, not much attention has been paid in literature which has implications for knowledge and attempts at fostering OP's quality of life and well-being (Agyemang-Duah & Rosenberg, 2023). In the past few years, scholars have drawn attention to the significance of rurality in old age outcomes and ageing (Rishworth & Elliott, 2019).

With the people of Ghana presently living longer, it is critical to focus on OP, especially within the research and policy arena. This will help to allocate resources to effectively develop formal support services for OP in this setting. In rural Ghana, the nature of the social support system and family composition influence the available resources and support for OP (Adonteng-Kissi, 2020). The Ghanaian context lacks formal support systems coupled with outmigration of adult children, declining social bonds, and decreasing family sizes (Braimah & Rosenberg, 2021). OP's experiences including the support services are shaped through complex relationships between structural and individual factors such as rurality, gender, values, cultural norms, place of dwelling, available support networks, economic conditions, and the policy environment (Braimah & Rosenberg, 2021). This article contributes to knowledge and policy practice by addressing formal support needs and enablers of ICs in the context of long-term care of OP living with chronic life-limiting illnesses in the homes and communities. To this end, we ask the research question below:

For informal caregivers of older people living with chronic life-limiting illnesses, what is their relationship with formal support in rural Ghana?

We utilized an empowerment approach to provide caregivers with the skills to improve their caregiving contexts which are expected to connect with improved outcomes.

Theoretical underpinnings—empowerment

Interventions intended to promote the empowerment among ICs of OP living with chronic life-limiting illnesses have been designed and attracted growing attention in view of the promising effects. Certainly, studies demonstrate that empowerment-focused interventions have the possibility to grow ICs’ confidence and coping mechanisms (Raemdonck et al., 2022), minimize depressive moods (Stepanian et al., 2023), and ease caregiver burden (Dong & Dong, 2023). On their own, interventions that are adapted to OP's chronic health conditions do not essentially cover the support requirements of ICs (Christie et al., 2018).

Empowerment includes growing self-awareness of prevailing influences, power differences, and/or accessibility of resources in the environment of OP and their caregivers, and getting insight into the systemic factors or structural processes that produce barriers that OP and their caregiver must contend with (Zoabi & Gal, 2020). Further, empowerment implies improving participation of OP and their caregivers in the processes of policymaking, mutual support activities and self-help, and social and community activities, and belonging to activity groups at various levels (Christens, 2019). Additionally, empowerment includes service user participation in services in which OP and their ICs take action for themselves either in partnership with services or acting independently of the services (Adams, 2017).

Social work is viewed as capacity building practice. This highlights the crucial contribution of social work to improve ICs’ growth and development. Skills utilization as empowerment is inherent in social work skills which are value neutral and identifies bias where it exists (Adams, 2017). This can highlight the capacity of OP and their caregivers and communities to access and benefit from the opportunities and resources that are situated within them, but it can also include working alongside service users and ICs to press for more improved resources (Trevithick, 2011, 2018). There is the need for collective action and collective experience to identify what is troubling the ICs as well as the OP (Mitchell et al., 2023; Noordink et al., 2021).

On a wider sociopolitical level, accessing support services, making material resources available and designing social policy are critical to foster empowerment (De Koker et al., 2023). Caregiving can be described as a dynamic process that is founded on relationships (Tough et al., 2022). The interaction between formal and informal caregiving has been explained as a method of “negotiating helpful action” (Van Regenmortel & De Witte, 2023). Further, Sims-Gould and Martin-Matthews (2010) designed a conceptual “triadic” model to incorporate the engaging nature of care delivery. The interface between the caregiver and professional is described as “assistive care,” whereas care offered by formal home-care support workers to the individual in need of care is described as “direct care.” In relation to direct care, OP are not passive recipients of formal support. Further, assistive care constitutes a bidirectional relationship that may be helpful to both ICs and formal caregivers. Regarding a triadic approach, three roles are recognized and regarded in terms of related responsibilities and requirements. Every party “brings to the equation a dedication to participate as a respectful and valuable care team member” (Talley & Crews, 2007, p. 227). Additionally, informal caregiving is usually examined from a stress-theoretical approach. This means that formal services are supposed to be a support source for ICs. It is usually theorized that an improved use of formal services will minimize caregiver burden and eliminate the adverse effects of caregiving (Swartz & Collins, 2019). Notwithstanding, the interaction between caregiver outcomes and the existence of formal home-care services is not clear-cut. Evidently, formal care does not necessarily lead to “relief” or a reduced burden for ICs (De Koker et al., 2023). The apparent burden of ICs may even be greater when formal services are available than when they are not (Lindt et al., 2020).

There are many reasons this could be the situation. Prior research that considered the effect of caregiver burden as a risk factor for the utilization of formal care services have acknowledged that caregivers occasionally exhaust their resources before utilizing formal support. It may be that caregiver burden drives the utilization of formal support. Additionally, the methodological quality of prevailing studies has been criticized, with the main issues involving the inability to explore many outcome variables, the inadequate difference between forms of services and the need to find moderators of intervention efficiency (De Koker et al., 2023). Further, a principal focus on stress and burden is very narrow, ignoring parts of caregiving dynamics and the interaction between informal and formal care (Lindt et al., 2020).

Method

This method section explores the research design, detailed interviews with participants, how data were collected using this method and the techniques used to analyze these data, and trustworthiness of the study design.

Research design

This study is structured in a qualitative research approach by specifically employing ethnographic interview techniques after participatory observations to collect the needed data from OP, ICs and healthcare professionals (HPs) during 6 months of fieldwork in Ghana. A pilot study was undertaken prior to interviews with participants. Hence, ethnographic interviews were carried out after participatory observations had been completed. The aim of these ethnographic interviews was to have a deeper insight into the matters developing during the observations (Rizzo & Bresciani, 2024). We structured the interview schedule based on the themes and potential patterns that arose from the analysis and the field notes made during our observations. The ethnographic interviews were planned to determine the means of reinforcing social structures to enhance the quality of lives of OP living with chronic life-limiting illnesses. Ethnography attempts to systematically observe, record, and assess lifestyles and patterns in a culture or subculture (Hammersley & Atkinson, 2019).

Participants

This study was carried out during 6 months of fieldwork in the Palliative Care Clinic of Korle-Bu Teaching Hospital, St. Luke Catholic Hospital in Apam, and homes of OP. The focus of these medical facilities is on multiple morbidity patients and patients who need regular medical inpatient attention. Referrals from other small clinics in the community are directly accepted by these medical facilities. Significant numbers of older patients have been treated there. These medical facilities run diagnostic tests, treat and manage real illnesses, and plan the requirements of future care in collaboration with other healthcare providers such as physicians, nurses, enrolled nurses, and healthcare centers. The target population of the study included OP living with chronic life-limiting illnesses and those involved in their care, such as ICs and health care professionals from the Palliative Care Clinic (i.e., doctors and nurses) of Korle-Bu Teaching Hospital as well as St. Luke Catholic Hospital in Apam who support OP to manage their symptoms. While the inclusion criteria for sample selection were for people aged 60 years or older, the average age of participants was 76 years. Further, participants were required to be diagnosed with at least one chronic life-limiting condition, confirmed by the older person or the IC, identified by the palliative clinic as being frail/weak, socially/medically dependent owing to the chronic condition, receiving some form of informal care, sufficiently strong to be included in the study, and speaking English or Akan.

Data generation activities

We undertook training in qualitative study and ethnographic interview techniques. We employed purposive sampling to choose all research participants to better match the objectives of our research, thus improving the rigor and trustworthiness of the data (Campbell et al., 2020). An information session was organized for the participants. Before our ethnographic interviews, we undertook participatory observations. We conducted 40 ethnographic interviews: 15 with OP living with chronic life-limiting illnesses; 15 with ICs; five with HPs from the Palliative Care Clinic of Korle-Bu Teaching Hospital; and five with health care professionals from St. Luke Catholic Hospital in Apam. Prior to the study, no relationship was established between us and our participants. The ethnographic interviews were undertaken in varied contexts including the Palliative Care Clinic of Korle-Bu Teaching Hospital, and St. Luke Hospital in Apam, offices of professionals and OP's own homes. We chose most of the ethnographic interview settings at each participant's convenience. The ethnographic interview schedule contained 18 questions, and each interview lasted between 30 and 90 min.

Data analysis

We analyzed our ethnographic interview data employing thematic analysis, a process of identifying themes within ethnographic interview data. Our analysis was not restricted to a particular epistemological perspective, unlike many qualitative approaches (Braun & Clarke, 2022). This makes our method flexible, a significant advantage considering the diversity of the study. We read our transcripts to improve our understanding of the complete data to obtain valuable insight (Lester et al., 2020). Transcript classification was employed during the process to enable us to cover appropriate data connected to our research question. We applied open coding to create an initial set of codes following our reading and rereading of our transcripts. We used open coding because we did not have preset codes and produced the codes as we read through the transcripts. We examined the initial codes to identify original themes to produce expressive themes. We reread and analyzed repeatedly the patterns to check that they expressed the responses of the interviewees. We presented the findings of our analysis and quoted from the responses of interviewees verbatim for the purpose of demonstration (Castleberry & Nolen, 2018).

Trustworthiness

Our background, qualifications, experience and credibility are important in qualitative research as we are the key instrument of data gathering and analysis (Eisner, 2017). Our interviewing skills, competence, and capability became the foundation of credibility of the data collected. We addressed the subject of credibility in the context of equipment used in the interview. We employed a tape recorder to record all ethnographic interviews, thereby, improving credibility. We further improved interviewer credibility by executing two pilot ethnographic interviews to get experience and the necessary skills. Certainly, we improved our interview techniques, and the quality of our data, as our research progressed. Therefore, we reported our results in a way that sought to reflect their tentative attributes. Furthermore, we have clearly employed auditability in this study about each phase of the study process, explaining, and amplifying, what was done. We attempted to overcome research bias by assuming a neutral position and refusing to offer our own perspectives during the data gathering process. Hence, we made checks and referral of our data and the tentative justifications to our study participants in confirming the study's credibility and accuracy at the end of the data analysis. We triangulated our data by using different sources to confirm the developing results. We considered suitable literature which made us confident that the information about the relationship of ICs of OP living with chronic life-limiting illnesses with formal support in rural Ghana as perceived by the participants in this research was as correctly conveyed as possible.

Findings

In this section, we include analysis of factors that serve as enablers for ICs of OP living with chronic life-limiting illnesses as presented by15 OP with chronic life-limiting illnesses; 15 ICs; and 10 HPs in rural Ghana.

Information and education

We include analysis of information and education that serve as enablers for participants in rural Ghana. The participants explained their experiences about information and education which are especially evident in the account of OP who regularly use medical care. For example, the three participant groups used words such as information and education to describe support services from medical doctors and nurses. Thirteen out of the 15 OP suggested that information and education help ICs to manage their chronic illnesses in the home environment. Meanwhile, all 15 ICs suggested that family conferencing and encouragement from HPs made information and education more effective. The relevance of information and education available through family conferencing to address the needs of ICs dominated HPs’ data set. Phrases that run through all interviews with HPs were “availability of ICs in sessions,” “willingness to participate,” and “contribution of ICs” in sessions. As one HP in Korle-Bu Teaching Hospital put it,

Sometimes, they [family] get to understand these [chronic illnesses] for the first time in family conferences, where we get everybody caught up and explain to them what we do and how we are going to manage the illnesses. (HP1)

While some OP perceived education and information by HPs as critical, they had a sense of disappointment around not getting anyone to accompany them to a doctors’ appointment. OP also needed help with how to use nasogastric (NG) tubes, getting appropriate food, hygiene, receiving insulin, and being regularly turned in bed to prevent pressure sores. For instance, 13 out of the 15 OP (participants) made statements such as “sometimes we don’t get the needed support” and “there are times that we need someone to help us take our medication.” While acknowledging the challenges of informal care for OP, all 10 HPs noted that information and education made a big difference for ICs. One of the HPs made this statement:

We try to encourage and educate caregivers who bring their relatives here and when we discharge them, we tell them to keep their eyes on them and consider their dietary needs seriously. (HP2)

The data set suggested that information and education lead to some caregivers acquiring knowledge on providing proper nutrition to the OP. The OP provided their subjective experiences of when their caregivers accompanied them to their doctors’ appointments making statements such as “my daughter try to get the needed information on diet from the doctor,” “my grandchild doesn’t ask the doctor enough questions to help me handle my chronic condition.” All caregivers under study suggested that they try to be proactive by seeking information from doctors on the causes of diabetes. One of the caregiver participants said:

I asked the doctor what was wrong with my mum in the hospital. I was told she's suffering from diabetes. I enquired about the causes of the ailment, and I was told it's about her lifestyle in terms of her eating habit … I’ve learnt from the doctor what kind of meal to prepare for her. (IC5)

Twelve out of the 15 caregivers indicated that proactive information from the HPs on medication allows them to manage OP's medication with efficiency. Meanwhile, one caregiver was happy that information could be sought from Google. All caregiver participants seek medical advice from doctors and pharmacists. A caregiver said:

Thanks to Google, I get information from google search engine. I also get medical advice from some few doctors and pharmacists I know. (IC2)

Caregivers’ view of benefits of caregiving is socio-cultural in nature and this is reinforced by most of the OP under study. However, some caregivers suggested that there are other physical and emotional benefits from caregiving such as knowledge, resilience, and maturity. However, a caregiver was quick to point out some challenges associated with caregiving. A caregiver who has been caring for her mother for 20 years explained that she is fulfilled in life through caregiving. Phrases such as “deriving fulfillment,” “acquiring caring skills,” and “being blessed by OP” appeared in 13 out of the 15 caregivers’ data sets. A caregiver told us:

My mum appreciates and blesses me always. I’m also motivated and get inner peace hearing kind words from her. (IC4)

This suggests that the ICs believe caregiving is beneficial in terms of getting blessings, feeling fulfilled, and acquiring skills. Expression of appreciation by OP for providing care is viewed by caregivers as a psychoemotional enabler and this was reflected in 11 of the 15 caregivers’ data sets. For example, the quotation below from a caregiver participant explains her appreciation:

I’m always happy when my mum appreciates my little contribution I make towards her life. (IC3)

The ICs’ responses to their understanding of benefits they derive from their relationships with OP consistently highlighted the importance of social expectation. This corresponded with what 14 of the OP and eight of the health professionals perceived as social obligation. The analysis suggests that more than half of the OP and HPs believed that social obligation and expectation constitute the “centrality of informal caregiving.” For example, one participant said:

I know the value of caring for my older sister. I don’t want to renege what society expects of me. (IC7)

Thirteen out of 15 caregivers believed that caregiving includes interacting with OP in the process of care transition. Comments that stood out were “cracking jokes with OP,” “being funny,” “having sense of humor” and “making your presence interesting.” Ten out of 15 caregiver participants perceived chatting with OP as fun notwithstanding the difficulties associated with caregiving. While one caregiver revealed that she enjoyed performing the role, another caregiver (widow) suggested she enjoys the work. In rural Ghana, the core principle of informal caregiving, which is “reciprocity,” is embedded in the understanding of caregivers. All 15 caregivers under investigation referred to the core value of reciprocity, and reiterated the “collectivism,” “mutuality,” and “‘communalism” of the rural society. One caregiver who cares for her grandfather explained how “collectivism,” “reciprocity,” and “selflessness” are relevant to informal caregiving as she pointed out values of caregiving which served as an enabler of informal caregiving. One statement by a caregiver is worth pondering:

My mum who I’m caring for, supports me when I need something. She gives me money if she has [it]. (IC6)

In terms of the principles of informal caregiving, the caregivers’ responses were consistent with those of the OP and the health professionals. They perceived collectivism, mutuality, and reciprocity as the values that drive the informal care system. Meanwhile, all 15 caregivers suggested that they receive gifts, such as money and clothing from other family members, as a way of showing appreciation for their caregiving. This point is reinforced by the field note of the participant observation which indicated that children of OP provide financial support to caregivers. This analysis suggests that caregivers who are not direct descendants of OP receive some form of reward for their caregiving role. A caregiver said:

One of my care recipient's family members visited us from abroad and gave me GHS100. I was very grateful. I appreciated it a lot. (IC9)

Given these narratives, it appears that support from family members of OP serves as a motivational source for caregivers. While acknowledging the support some caregivers receive from relatives of OP, other caregivers who do not receive support from relatives of their care recipient lack access to resources burdening them with financial challenges which can lead to isolation in the caregiving relationship. For example, an older participant decried the financial challenges he is going through.

Planning and coordinating activities

We include analysis of planning and coordinating activities that serve as enablers for participants in rural Ghana. Fourteen out of 15 caregivers’ datasets suggested that skill training in planning and coordination usually substantially improves task-oriented coping, competence and mastery, and considerably reduces task-oriented coping, stress, and burden. This suggests that a significant majority of the caregivers wanted a more regular skill training in planning and coordination to minimize caregiving stress. Eleven out of 15 caregivers believed that planning and coordination is a support system for informal caregiving. The field note and the data set suggested that when caregivers put effort into planning and coordination activities, the actual caring becomes straightforward. While some caregivers suggested that coordination activities include transition from the hospital to home and vice versa, other caregivers believed it involves provision of follow-up support in the community. This demonstrates that different caregivers under study have different understanding of what constitutes coordination activities. All 15 caregivers’ data sets suggested that the inability to plan and coordinate the activities of caregiving can result in crisis situations leading to hospitalization. Further, planning by caregivers was considered an important factor because caregivers have other personal responsibilities, and this was expressed in 14 out of 15 interviews from the caregivers’ data set. For example, 10 out of the 15 caregivers made statements such as “I need to plan because I go to work,” “planning helps me to navigate through my school activities,” and “planning helps me to care for my kids.” This point was echoed by one HP who suggested that some caregivers usually make the effort to plan to perform their multiple duties. The field note of our observation suggested that caregivers acknowledged the importance of planning and coordination and therefore use strategies such as cooking in bulk and putting food in the fridge to get enough time to care for OP without compromising on their own work duties. Many caregivers explained how they plan and multitask regarding working and schooling to effectively care for their OP. For example, caregivers used words such as “preparation,” “organization,” “extensions to daily routines,” and “preparedness,” to describe well-planned informal caregiving practices. Six of 15 ICs suggested that they coordinate their work activities with and other supporting secondary caregivers, which is an integral part of caregiving needed to manage the distributed nature of cooperative work within the extended family setting. Meanwhile, all 15 caregivers suggested that secondary caregivers provide additional support in the informal care system and if they are unable to fulfill their responsibilities, they usually inform the primary caregiver to find alternative support. The view that primary caregivers are more empathetic to OP than secondary caregivers dominated the ICs’ data set.

The different kinds of support that run through all interviews with caregivers were administering medication, hygiene, dressing, eating, bathing, going to the bathroom, and mobility. At the same time, caregivers highlighted dynamics of the family relationship before OP experience illnesses and how that influenced caregiving. Caregivers suggested the financial challenges they encounter in caring for OP. For instance, nine out of 15 caregivers made statements such as “I’m cash trapped sometimes” and “there are times that I don’t have cash at all.” More than half of the caregivers explained that they delegate some of their roles to other family members or community members. The phrase, “my daughter supports me” appeared in 12 out of the 15 caregivers’ interviews. The data set indicated that existence of a close relationship before OP's chronic condition ensures that there is an effective working relationship between caregivers and OP. Some participants gave their subjective explanation of how delegation is supported by the cohabitation household system. Most caregivers suggested that appropriate delegation improved the capacity and flexibility in providing care and ensured the well-being of caregivers, so that caregivers were not overburdened. One caregiver explained:

I supervise my children to perform some of the caregiving activities for me. I make sure they do anything my older mother asks them to do. For the important ones, I always try to do it myself. (IC8)

OP's understanding of delegation complements that of the caregivers. However, the OP provided a somewhat cultural understanding of delegation, suggesting that delegation is possible because traditional care and support for OP in the rural community are sustained by generosity and willingness of social networks. One of the caregivers who had been caring for 20 years explained that she involves her neighbors in caring for her mother so that she can go to work while her children are in school. Such a statement recognizing the support of neighbors in caring for OP in the rural community under investigation appeared in 11 out of the 15 ICs’ data sets. One of the ICs who had cared for her mother for 7 years explained that she communicates with her mother by phone when she is not at home. All 15 caregivers’ data sets suggest that caregiving comes with some challenges; therefore, they would need some form of formal support.

Discussion

Our study is an innovative effort at exploring formal support for ICs of OP living with chronic life-limiting illnesses in the context of two themes: information and education, planning and coordinating activities.

Interaction between formal and informal care

The interface between formal and informal care and issues around how effectively to support ICs are a critical part of present debates on how to sustain the long-term care system (Barczyk & Kredler, 2019). ICs are viewed as collaborators with OP with their individual needs; however, there is more work to be done. The empowerment process of OP and their families can be supported and facilitated by professionals through the creation of enabling environments (Van Regenmortel & De Witte, 2023). Many ideas stated in this article are related to the framework of Van Regenmortel (2020). There are four pillars of empowerment, namely strengthening, connection, trust and resistance to disempowering activities. Trust and connection are requirements for positive outcomes of the “interaction.” Trusting and stable relations between the service user, ICs and professionals, and the acknowledgement of everybody's contribution in the “caregiving triad,” are critical (Tough et al., 2022). Recently, considering ICs as coexperts and persons with their individual needs is now emerging, and the methodical assessment of caregivers’ needs is far from routine. De Koker et al. (2023) argue that baby boomer caregivers have improved insights into their rights, search for specific and full information, and probe norms. Evidently, this generation puts forward their needs, compared with older caregivers who await their support and ask fewer questions.

It is critical that policies around homecare involve policies developed to empower and support ICs at the mezzo and macro levels. Sims-Gould and Martin-Matthews (2010) contend that a holistic policy on caregiver support needs to be integrated into policies around homecare and vice versa. Triadic care requires time, for example, particular strategies for information sharing, and specific support delivery. It is crucial to make informal care more conspicuous and lessen the risks of burden, and to reduce mental health challenges, psychosocial and economic difficulties (Lindt et al., 2020). Particular attention needs to be paid to new types of informal care including citizenry programs and neighborhood support around care. Further, there is the need to have realistic expectations about this type of informal care. Usually, the targets set by professionals and policymakers need to be achievable. This type of informal support is less regular and more ad hoc than formal support. Nonetheless, this type of support and caregiving may be highly empowering for OP living with chronic conditions (Trevithick, 2011, 2018). It may improve their sense of belonging and self-worth. The ability to provide and contribute to society has positive impacts on people's empowerment and general well-being (De Witte & Van Regenmortel, 2020).

Information and education

The empowerment of OP and their caregivers should be a priority in healthcare as caregivers assume a key empowering role to adequately respond to and meet OP's needs (Agyemang-Duah & Rosenberg, 2023). Participants suggest that information and education from HPs help caregivers to manage OP's chronic illnesses in the home environment (Raemdonck et al., 2022). These participants’ suggestion is reinforced by empowerment theory-based health education which leads to a substantial improvement of knowledge on chronic health conditions (Liu et al., 2024). We recognize that caregivers’ educational needs such as health literacy, family conferencing and encouragement from health care professionals made information and education more effective for informal care. This is consistent with the work of Mohamed et al. (2021) who suggest that there is the need for considerable information among caregivers of people with substantial bowel cancer, many of whom have inadequate information of what to expect after their relatives undergo intestine surgery. Participants underscore the social process of communication with health professionals across all domains of hospital-to-home care transitions. Our findings reinforced the need for caregivers to collaborate both with the OP in their care and with their health professionals to obtain support and education for self-management (Christens, 2019). Caregivers for OP highlight the significant changes in their information needs over time. Caregivers prefer that information about support be offered as soon as practicable after the diagnosis of OP. Further, caregivers want more information about medications and research. In many cases, caregivers explain that information offered by health care professionals encompasses the need to go with OP to doctors’ appointment, how to use NG tubes, give suitable food, hygiene, provide insulin, and often turn OP in bed to avert pressure sores. This suggests that caregivers’ information needs were not confined to medical or physical issues but included maintaining the proper nutritional regime for OP living with chronic life-limiting illnesses.

Planning and coordinating activities

In this study, we find that skills training in planning and coordination for caregivers can lessen caregivers’ stress (Swartz & Collins, 2019), with a possible subsequent improvement in the quality of OP's care (Braimah & Rosenberg, 2021). Nonetheless, findings are based on a relatively small sample, supporting the need to undertake further research in this area of study. We find that planning and coordinating activities to implement an empowerment intervention is an important element since family caregivers have other individual responsibilities such as work or school. Therefore, a family-based empowerment intervention program must be prudently coordinated to cover all OP living with chronic life-limiting illnesses (De Koker et al., 2023). This will enable caregivers to meet their multiple responsibilities which are sociocultural in nature. Empowerment of OP and their caregivers is therefore an innovative aspect of this research. It offers clues on how to better support caregivers in their attempts to adapt and transform their activities so that they can direct OP toward greater independence (Adams, 2017). We further find caregivers’ coordination of the care transition, and provision of follow-up support in the community, to be important. Participants suggest that planning and coordination of activities is a formal support service to informal caregiving (Lindt et al., 2020). Planning is a critical element as it enables family caregivers to meet their multiple obligations such as work and/or school.

Caregiving is effective once caregivers put effort into planning and coordinating their activities. Failure to plan the activities of caregiving can lead to crisis situations with the only practical option open to the caregiver being hospitalization. In this situation, therefore, the supplementation logic, whereby offering further formal supports at the initial phases can generate additional capacity of family caregivers (Talley & Crews, 2007), avoids the utilization of more expensive rehospitalization. Many caregivers perform primary caregiving activities; work as coordinators tasked with the management of all the essential care responsibilities; and play a leading role in undertaking some coordination work. Primary caregivers are responsible for coordinating all the different components of informal caregiving activities, ensuring that all the caregiving work is effectively and efficiently performed. Furthermore, since family caregiving is informal, and caregivers have work, school commitments, and social life, they must cook in bulk and timely to meet nutritional needs of OP without compromising their work or schooling.

Our study results indicate that when the secondary caregivers cannot meet their obligation, they normally communicate that to the primary caregiver to find other support. Hence, we argue that it is critical that the right support is provided for the primary caregivers. To achieve this, there is the need to maintain an increased awareness of the caregiving tasks to enable other caregivers to have insight into more of the difficulties experienced by the primary caregivers. This can promote enhanced engagement with other caregivers (Mitchell et al., 2023; Noordink et al., 2021). Furthermore, such awareness can assist rural Ghanaian caregivers to be more conscious about the difficulties encountered by the primary caregivers so that they can offer appropriate support to the primary caregivers when required. Additionally, primary caregivers are usually more invested and more empathetic in the illnesses and challenges of OP living with chronic life limiting illnesses in their care than secondary caregivers. In view of this, primary caregivers are more expected to experience increased psychological stress as a cost of caregiving that may negatively influence the caregivers’ own lives (Paul & Schröder-Butterfill, 2022). This can have significant impacts on the quality of life of ICs (del Río Lozano et al., 2017). Further, there is gender politics surrounding informal caregiving as it is mostly provided by women who receive little monetary or societal recognition for their work. In the longer term, this can lead to the feminization of poverty. Therefore, an enhanced awareness of caregiving activities, together with regular interpersonal communication among the caregivers, can possibly assist in reducing both financial and other costs of caring (Van Regenmortel & De Witte, 2023).

Limitations of the study

The research was undertaken in a rural area in Ghana. The experiences and characteristics of OP living with chronic life-limiting illnesses and their ICs conveyed in the research cannot express those of all OP and their ICs in other rural areas in Ghana. Therefore, generalization of this data is not feasible. Another consideration is that the interaction between OP and their ICs can be viewed as dyadic. While our interviews were undertaken individually, the participation of the other people (participants) may have reduced the capacity of the other participants to freely express themselves. This may be a marginalizing effect and influence the findings of our research. Additionally, presenting the findings together can influence the confidentiality of participants. Finally, the data were gathered in both the English and Akan languages. During our transcription, the data in Akan language were translated into English language. Therefore, there is the possibility of losing meanings in some words due to the differences in languages during translation.

Implications for social work

There is the need for social workers to be aware of the relevance of working with ICs to care for OP living with chronic life-limiting conditions. It is critical for social workers to understand the difficulties of collaborative caring and act to deal with these challenges. Further, there is the need for social workers to establish and sustain relationships with caregivers of OP, challenging constraints on caregivers’ role and advocating to strengthen formal supports such as information and education, and planning and coordinating activities. In building on their coping mechanisms, social workers can support caregivers to identify their unique strengths and capabilities that would improve their general resilience. Interventions with caregivers may play a part in building resilience, which in turn may improve the possibility of more beneficial and humane caregiving during OP's illnesses. Caregivers’ assessments of the common issues need to support social workers to identify their strengths and weaknesses to deal with them as part of interventions.

Conclusion

The IC plays a critical role in the long-term care of OP living with chronic life-limiting illnesses. The development of formal support for informal care has been considered essential for a sustainable healthcare system, especially one providing care for OP living with chronic life-limiting illnesses. To develop such a system, policymakers should understand how enablers and formal support translate into effective care for OP living with chronic conditions. Therefore, a critical consideration for contemporary society is to design policies, interventions, and formal support for informal care that promote information and education, and planning and coordinating activities which most of the empowerment-centered interventions dwelled on. The effectiveness of information and educational programs needs to be investigated as a follow-up study. Supporting ICs’ psychological wellbeing through the acquisition of adaptive coping skills to improve positive feelings and address caregiver tensions has received limited attention. Therefore, future research should explore the teaching of adaptive coping skills to improve positive feelings. Further, there is the need to investigate empowerment-centered interventions focusing on ICs of OP. Additionally, future research needs to focus on dealing with gender imbalance and on less represented domains of empowerment in intervention studies.