Informal Caregiving: The Lonely Road Traveled by Caregivers in Africa

Abstract

Individuals with chronic illnesses, disabilities, or aging-related conditions often rely on informal caregivers, typically family members or relatives. This role is frequently taken on by women who are unprepared, untrained, unpaid, and have other family commitments. The physical, social, financial, and emotional burdens of caregiving can lead to sadness, anger, resentment, and frustration, resulting in reduced quality of life, depression, and loneliness. This chapter explores the implications of informal caregiving, focusing on caregivers’ loneliness and its determinants. Loneliness manifests as depression, anxiety, hypertension, and a decline in quality of life, contributing to feelings of being unheard and unappreciated. Key determinants of loneliness include personal attributes such as gender, family circumstances, employment status, financial obligations, and education level. Strategies to manage loneliness include respite care, self-care behaviors, recognition, and spirituality. In the African context, cultural expectations and the conflict between traditional and modern values exacerbate these issues. The lack of governmental support places a heavy burden on caregivers to meet all the needs of those they care for. This chapter underscores the crucial role of family and community in providing necessary care and support to caregivers, enabling them to offer optimal care.

1. Introduction

Providing care to my 92-year-old father-in-law opened my mind to the world of informal caregiving in an urban setting in Africa. Although my job as a registered nurse requires delivering care to the elderly in the hospital, doing so for my father-in-law was my first experience as an informal caregiver, which is incomparable to institutional care. At the beginning of the caregiving journey, family members suggested us (my husband and I) co-reside with the aged parents-in-law to provide care for them both, his father needing additional care due to his age. Little did we know the huge commitment we signed up for, including the fact that we moved into their home. Days rolled into weeks then months and years, and as the care intensified, so did the burden of providing it with little support from the rest of the family.

Informal caregivers are often family members or relatives, and many having no training or experience in providing care, who through circumstances, are required to provide the services of care on a part-or-full-time basis. They are unpaid family members, spouses, children, grandchildren, or significant others who volunteer or are obliged to provide care for sick, elderly, or disabled individuals (14). The circumstance often requires the person needing care, or the caregiver, to move into the other person’s home, resulting in disruption for both. When the homes also consist of other family members, their lives are also affected, with compromises and adjustments being required by everyone.

In Africa, the caregiving environment presents various challenges, given that many countries are regarded as low-or-middle-income and therefore have limited state-funded social and healthcare services. This is often due to financial constraints, which have implications for ensuring the availability, accessibility, and affordability of quality services for all those in need, specifically those requiring at-home care. In many of these countries, most people are unable to afford paid-for home-based caregivers and therefore rely on family members to provide such services for those needing short-and long-term non-medical ongoing care.

Being the daughter-in-law in an African setting, living in my in-law’s home, and being a healthcare provider by profession means that it was expected of me to provide the care, with the bulk of caregiving resting on my shoulders [1]. Balancing intense caregiving and a secular job was very demanding, as it imposed a considerable burden on my health, well-being, and quality of life. Despite my commitment to caring for their parents, I received minimal support from other members of their family, which consisted of three brothers and their respective wives and two sisters and their husbands. As a result, I suffered emotional trauma from their lack of recognition and appreciation, as we were constantly rebuked for not doing enough.

Informal caregiving by an unpaid caregiver, usually a family member or significant other, is provided at home to the elderly, disabled, or sick persons as an expression of love and out of a sense of moral duty. Despite some caregivers deriving fulfillment from taking on the responsibilities, it can also impose a burden for a variety of reasons [2, 3]. Globally, informal caregiving appears to be an acceptable way of caring for relatives, having been found to be advantageous for the care-recipient, caregivers, and society. Individualized care can be adapted to accommodate the needs and responsibilities of those involved, as opposed to hospital-based care that is routinized.

Families provide care for elderly, disabled, or chronically sick relatives, neighbors, or spouses for various reasons, including love and reciprocity. They may also do it out of obligation, the lack of alternatives and to promote closer relationships among the sick relatives and other family members [4, 5]. Some individuals take on the role of a caregiver to give their life meaning, especially an elderly spouse or grown-up children, who may be retired or not working, and others add the role to those required by their paying job, often being unprepared for their increased responsibilities, specifically when there is no one else to assist with the caregiving [6].

The term caregiver will be used interchangeably with the term informal caregivers throughout the document to denote those who provide care in home settings, who seldom have the benefit of formal care training, being able to step away from their responsibilities or being paid, therefore being regarded as informal caregivers. In contrast, formal carers work in institutions, such as hospitals, old age, or client homes and are paid to work specific hours a week. Privately employed caregivers are able to receive support interventions when needed and are less likely to experience loneliness from caregiving, as their family life, social interactions, and lifestyle are seldom affected [2].

2. Implications of informal caregiving

While home care may be a cost-effective measure, provided in the comfort of the care-recipients’ or caregivers’ home, with minimal cost to the society and the government, it can take a considerable toll on the caregiver’s finance, health, and well-being. Being an informal caregiver can have implications for people’s physical, emotional, and mental health, as it can be a demanding role, being done out of a sense of duty and often love, but for which people are seldom prepared [7].

As a result of their new circumstances, informal caregivers can experience a variety of emotions such as anger at being forced to provide care and having to give up work [8]. Caring for a spouse or close family relatives could lead to feelings of resentment due to the added responsibilities and losing their lifestyle which are often taken on at the expense of other aspects of their lives, such as social interactions and family time [2, 9]. They may also experience frustration at their family’s lack of preparedness, feel inadequate to take up the caregiving role, sadness as it is a family member who has become disabled or chronically ill, and disappointment at the lack of family support, all these resulting in some caregivers caring journey being a lonely one [8].

Studies highlight the prevalence of depression and increased behavioral problems among caregivers, which influence both the quality of care provided, the overall well-being, and quality of life of the caregivers [7, 10]. As caregiving is sometimes unplanned and sudden, the stress and pressure associated with family caregiving duties can stem not only from physically tending to the care-recipient, but also from emotionally worrying about and witnessing a loved one’s struggles with poor health, disability, or age-related frailty [11]. The pressure from rigorous routines, potential conflicts within the family, uncertainty about the future, and the distress caused by personal sacrifices are some of the factors affecting caregivers [12]. The pressure and tension associated with caregiving responsibilities within a family can come from providing direct care to the care-recipient, as well as from emotionally investing in and witnessing a loved one’s struggles with illness, disability, or age-related weakness [11].

Social interactions with family and friends can also be compromised, with intense and prolonged caregiving being one of the factors that excludes informal caregivers from participating in social interactions/events, including religious and cultural ceremonies, which they may previously have enjoyed [13]. Friends and family members may overtime not invite caregivers to social activities due to their unavailability leading to feelings of loneliness and abandonment. Caregivers are often “hidden”, with little social recognition for the time and effort they give to providing substantial care to their dependent relatives. In some instances, care-recipients and family members may not recognize or appreciate the caregivers, leading them to develop feelings of worthlessness. Caregiving may also affect the carers physical health, as trivializing their caregiving role, due to their own assumption, as well as their families and society’s expectation, that it is the right thing to do, may result in their over-extending themselves and succumbing to illness or injury, sometimes becoming patients in the immediate future of providing care for a sick relative [14].

Caring for people with chronic illnesses or disability can cause disruption in caregiver’s family, as they often take on the caregiving role unprepared, untrained, and for the first time [15]. As most caregivers are females, the responsibility in many African families often falls on the eldest child or the first male child with a wife, who sometimes has to combine it with a paying job and her own family responsibilities [16]. The family’s daily routine may be altered, their space shared with a relative who needs assistance, their privacy compromised and everyone’s welfare affected, leading to feelings of frustration that can be difficult to manage [17]. Family members may offer support when the caregiving journey begins but may dissipate as the condition worsens or does not improve and the care needs intensify, and this is similar to my experience. The caregivers own families may experience conflicts as the members compete for space, attention, and resources. While some caregivers are abandoned by the family to navigate the caregiving journey alone, others have found it to promote cohesion and provide sense of fulfillment and appreciation, enjoying the presence of the family members who needs care [12].

My sibling’s involvement and support enabled me to take a rest and attend a few social programs, particularly during the weekends, and baby-sat my daughter on demand [18]. On the other hand, my husband’s siblings, most of whom live hundreds of miles away, seldom helped or involved themselves in caregiving. As our relationship with them became tense, internal family disagreements increased, and strain on our marital relationship intensified as my husband appeared helpless to prevent further confrontation with them about our care of their father [19]. Caring for an additional person can also put a strain on family finances in the absence of government or family support. Not only is there at least one additional person to feed, but depending on their health status, they may need specific food. For example, people who have had a stroke that affects their ability to swallow may require special food that the family does not normally buy due to its cost [20].

Despite the potential adverse effects on caregiver well-being, physical and mental health, and life satisfaction, the start of informal caring does not necessarily result in increased loneliness [21, 22]. Studies highlight that volunteers who provide care willingly are less likely to experience loneliness than those who are compelled to do so [22, 23]. Characteristics such as higher education and socioeconomic status as well as good health have been associated with decreased risks of loneliness among informal caregivers. These have been found to improve time management in providing care and enable the affordability of resources that supports caregiving [23].

3. Informal caregiver loneliness

Caring for individuals who are aging, have a disability or chronic illnesses, can negatively impact caregivers’ well-being, as indicated by research revealing feelings of loneliness, hopelessness, decreased self-efficacy, social withdrawal, and loneliness [5]. Loneliness is due to a combination of factors, including not being heard or appreciated, the assumption of the obligation by others, irrespective of what they want, uncertainties about how well they perform the role, and poor coping strategies as a result of the recipients deteriorating condition [8].

Loneliness, stemming from factors such as providing care alone, a lack of time off, and transport to leave the environment and participate in social events, or feeling subjectively isolated, is a psychosocial indicator linked to reduced quality of life. Family caregivers are often so overwhelmed with caregiving that they do not have the time to engage socially with people in the community or the energy to participate. Loneliness amplifies feelings of vulnerability and heightens subconscious mental processes that hinder relaxation and deep sleep. Together with insufficient social connections, it has been correlated with self-reported disruptions in sleep and daytime dysfunction, such as diminished energy and increased fatigue, anxiety, and depression [24].

The caregiver’s endeavor to provide care that ensures as optimal quality of life as possible for the person needing care may result in their experiencing a compromised quality of life [25]. This can be influenced by factors such as gender, cohabitation with the care-recipient, intensity of caregiving, financial instability, and unpreparedness for the role [26]. Isolation and diminished social interactions due to the additional demands on their time and energy can contribute to stress in caregivers, impacting the quality of life for both caregivers and care-recipients. Despite living with a partner while taking on additional care duties, a poor relationship between care-recipient and caregiver could also lead to feelings of loneliness [25].

Experiencing loneliness is a common outcome of caregiving due to the substantial time and effort it required to provide care, often around the clock [27]. Persistent sensations of isolation (loneliness) are characterized by challenges in concentration, cognition, emotions, and behavior, leading to impacts on health and longevity by affecting the genetic, neural, and hormonal mechanisms that regulate well-being [24]. In addition, inherent in social isolation related to caregiving can be physiological, social, emotional, and other health-related conditions.

Various types of loneliness, including reduced personal space, social interaction, and contact with close friends and family, are also attributed to the constraints imposed by informal caregiving [28]. This loneliness often correlates with heightened levels of depressive symptoms and a decline in enjoyment of time away from the caring responsibilities [21]. The experience of loneliness is particularly common among caregivers of older adults who require long-term care and has been linked to several adverse health outcomes, including depression, anxiety, hypertension, and a decline in the quality of life [27, 29]. This chapter focuses on the determinants of loneliness among caregivers and recommends support interventions to manage it.

4. The determinants of loneliness in caregiving

Many factors can influence the manifestation of loneliness in caregivers, such as their profiles, care intensity, caregiving environment, social invisibility, lack of family support, financial constraints, and health crisis, both short and long term.

4.1 Caregiver profiles

The profile of the caregiver can play an important role in how they cope with and respond to the demands associated with providing home care to a relative or family member. Factors such as gender, family circumstances, employment outside the home, additional financial obligations, and educational level can all be important [30, 31]. Caregivers can be male or female, are often middle-aged, divorced or widowed, and retired or actively engaged in secular employment [32]. However, females are more likely than males to take up the caregiving role due to gender-based power dynamics and cultural dynamics, and their responsibilities in the home often result in the assumption that they are available to provide care and therefore should be willing to do so [33, 34, 35].

Informal caregivers have been found to provide care for more than one family member, and their family circumstances sometimes result in competing responsibilities [36, 37]. For instance, the arrival of my daughter presented competing demands between caring for my father-in-law and my new baby. Navigating both responsibilities increased the duration of caregiving and significantly disrupted the mother–child bonding process, given that this was for the first time, which meant learning the process of parenting, with little time for rest and relaxation [38]. Parents with many children can experience extreme fatigue with severe consequences on their overall health [37].

For working caregivers, the demands of caregiving can necessitate reducing the hours of paid work in order to accommodate the caregiving and other home-based responsibilities, leading to financial stress from loss of income or debt accumulation [39]. Studies highlight that the need to decrease number of work hours or leaving employment to care for someone contributes to the overall financial strain experienced by caregivers [35, 40]. Caregivers may encounter challenges that they are not prepared for when taking on additional financial obligations and expenses that are associated with certain illnesses or life stages. The debt burden for caregivers usually increases in countries where medical care costs are paid out of pocket and not provided free to people who cannot afford them [41]. Caregivers who have such financial burdens and lack financial support from the family might experience feelings of depression and anxiety, which exacerbates their loneliness in the absence of adequate support. Although my husbands’ family members supported us financially, their lack of trust in how we spent and managed the money resulted in conflict.

The financial strain of caregiving to a chronically sick person can be significant, due to the cost of treatments and medications, and home care products associated with personal hygiene or specialized food. There are also incidental expenses such as transport to health facilities, clothing, and bed linen. These economic burdens can result in a reduced quality of life for the caregivers and their family, with obstacles in following their own treatment plans or neglecting their healthcare needs, leading to depression and emotional stress [31].

Care-recipients and caregiver families face financial challenges in developed and developing countries where health care is mainly funded privately, such as the United States and India, respectively. This can be due to gaps in insurance coverage, where it is available, and the costs associated with accessing or acquiring goods and services related to the additional care. In many countries, the impact of financial hardship also affects patients where government-funded universal health care only covers their medical requirements, but does not provide for their food or other personal needs [40].

Education has also been found to play an important role in caregiving, with college-educated caregivers being more likely to find ways to overcome their challenges by accessing online resources for information compared to those who only have a school education [42]. In some rural areas in Africa, women do not always have the opportunity to complete their school education, let alone attend tertiary institutions. Those schools that do not have electricity are unable to provide computer instruction or expose their students to the vast amount of information that can be accessed through digital technology. While the personal factor associated with caregiving plays a central role in how they respond to their new circumstances, many of which have no control over, the intensity of care required is also a key factor in their health status, including loneliness.

4.2 Care intensity

Caregivers take on the duty of providing help with everyday tasks, such as getting dressed, eating, bathing, using the toilet, walking, communicating, and dealing with services, such as the healthcare system. The intensity and extended duration of these caring activities can be exhaustive and overwhelming for the caregiver, who may lose important social support and withdraw from others in order to cope with the demands of caregiving, especially for those with functional impairments [43]. Family and friends may distance themselves from caregivers due to their lack of appreciation for the level of care being provided and the ongoing demands of caregiving. Moreover, societal biases against certain health issues, such as HIV/AIDs or Tuberculosis (TB) and disabilities, may lead caregivers to isolate themselves from social activities and gatherings if they need to go with the person needing care [43]. The intensity of care can also depend on the relative’s condition, with disabilities and age-related conditions requiring more long-term support, and conditions with poor outcomes, or those that require intense treatment, such as cancers, needing time-consuming attention [33]. Informal caregivers of patients with Cancer provided an average of 32.9 hours of caregiving per week, with most providing care for more than a year, this being in contrast to caregivers of patients with dementia, who provided care for up to 10 years [3, 44].

As the global population’s mean age continues to rise, many societies are experiencing a shift toward smaller families and varied living arrangements due to the constraints of urbanization, with smaller homes and properties, and industrialization, where people earn an income from being employed in businesses and factories [45]. The implication of these adjustments is that the smaller families and their work responsibilities result in few family members being able to step into the role of an informal caregiver, imposing the burden on those who are able to do so, or on relatives in other homes. The intensity of care required is not only affected by the person providing the care, the caregiver, but the environment in which they live, all of which contribute to their ability to cope and experience loneliness. Informal caregivers often have concerns about the progression of the older relative’s illness, which can change over time as they age or new conditions emerge, such as dementia [44]. Preference among care-recipients to receive care from close relatives, and in the comfort of their or the caregiver’s homes, or the lack of funds to hire caregivers, increases the duration and intensity of care for the family caregiver, which reduces their opportunity for having a break [18].

4.3 Support structures

Similar to the caregiving environment in Africa, it is usual for families to designate one person as the main caregiver for elderly members in Brazil, Belgium, and Sri-Lanka [35, 46]. This person takes on the majority of caregiving responsibilities, which can lead to negative effects, such as exhaustion and loneliness [6]. Studies suggest that informal caregivers typically do not receive adequate support from other family members, affecting both their caregiving duties and their ability to attend to their own personal interests [6, 46]. Similar to Africa, studies conducted in Australia and in Belgium highlighted that caregivers spent considerable amount of time providing care, lived with the person(s) receiving care, provided care for multiple individuals, and received no outside help. This resulted in their experiencing increased psychological distress, their unmet personal needs being associated with their feelings of social isolation and loneliness [35, 43]. Spouses mentioned feeling more restricted in their situation and carrying a greater weight of responsibility than other caregivers, such as parents or friends, as they deal with the caring for their partner [47].

4.4 Lack of government support

The lack of financial support from the government puts a strain on many families, whose income is often barely sufficient to meet all their family needs, and who not have to accommodate an additional person. The added family responsibilities can result in one family member having to reduce the working hours or stop work completely, due to their additional caring needs. While informal caregiving reduces the financial cost of social care for the government by keeping them out of funded homes and hospices, in many countries they receive little or no social or financial support from the state when they take on these additional responsibilities [37]. In most developing countries, government support is not available, with family members filling the care gap.

In African countries in particular, government seldom allocates resources to social support interventions due to their resource constraints and the assumption that it is a family responsibility, thereby accepting the caregiver’s invisibility. This underscores why some caregivers become chronically sick themselves, as there is no financial or psychological government support for them to call on when the family is not willing or able to assist with their responsibilities. In South Africa, the government provides a disability grant for those approved for such by their physicians, and an old age pension for those 60 years and over whose income is below a threshold amount, which can be used to provide for their needs by the caregiver [48, 49]. In the United Kingdom, elderly persons are supported by government funded measures, such as meals and home help, which enabled people to live as independently as possible for as long as possible, often supplementing family caregiving [50]. The government also provides a weekly carer grant, irrespective of the relationship to the person being cared for [48], while many families pay for private caregiver assistance at their homes. In instances where caregivers receive support from relatives and the government, they are able to provide extended good quality care without developing problems themselves [10].

4.5 Accessing specialized medical care

Some chronic or debilitating medical conditions require specialized and or tertiary care, which is usually provided in urban hospitals, the caregivers generally needing to accompany them, either for a day visit to a clinic, or for admission into hospital for an extended stay. For both events, the caregivers are expected to accompany them, to get them there, and sometimes speak on their behalf. This means that their caregivers residing in rural areas may also need to relocate, find accommodation, navigate in a new environment, and at the same time disrupt the dynamics of the family left behind, including their social and financial relationships.

4.6 Culture and care

Ubuntu, a belief system that has its roots in Southern Africa, emphasizes the importance of deriving a person’s identity from the community, although the sentiment may apply in many other communities without being formalized. The principle of “I am because we are” includes interpreting the social concept of sickness and caring among families [51]. The importance of mutual support in “Ubuntu” has kept families, communities, and societies united during difficult times [52]. In cultures that embrace Ubuntu, it is common for extended family members to take on the responsibility of caregiving. Sickness is perceived as a family affair in many African cultures, with extended family dynamics often resulting in decisions being made by senior members, those affected having little ability to influence or challenge what has been decided. Inter-generational dynamics also make it difficult for elders to be challenged, with decisions being made that can override the wishes of affected younger persons, such as caregivers.

In some African cultures, the understanding of health conditions may not be Western-based, making the approach to caring difficult when there are varying concepts of the causes of problems and how to address them. For many families, the first point of contact with a health practitioner is a traditional healer, who may prescribe rituals and herbal portions, with Western health care only being sought when there is no improvement. This can put pressure on caregiver, who needs to provide care throughout this process, and is often not listened to when telling the family that there is no improvement or conditions have worsened, adding to their sense of loneliness and isolation. Caregivers who are required to implement instructions that are contrary to their beliefs and practices might withdraw from caregiving, this being regarded as an insult to the family, for which they may suffer social isolation.

In Malawi, when a person becomes sick and is hospitalized, they receive care not only from healthcare professionals but also from their relatives, who are referred to as Guardians. This practice is influenced by the Ubuntu philosophy in response to the inadequate number of staff to deal with the high patient numbers in many healthcare facilities [52]. In Africa, cultural expectations and the preference for family-based caregiving over institutional care, which may also be limited, significantly increased the responsibilities shouldered by family caregivers.

The complexities associated with having to work within cultural constraints can be very frustrating and sometimes demeaning for caregivers, with the family keeping a close watch to prevent breaches, and to reprimand when their standards or requirements are not met. Adhering to cultural protocols can also be difficult for younger family members who do not subscribe to them or whose education and experiences have resulted in their choosing to subscribe to different beliefs and practices. This can create conflict between the family member and caregivers, who may not be prepared to compromise their beliefs and standards to accommodate their relative’s wishes particularly when it affects their lives and those of their immediate family.

For example, there are also cultural norms regarding younger women caring for older men, mothers caring for sons, and children bathing their parents and seeing their nakedness, a taboo with severe consequences, which makes caregiving challenging in the absence of additional help [53]. In this regard, rural women are more likely to be prone to cultural pressure, specifically in patriarchal African societies, where they do not have the same platform as men to voice opinions or challenge decision [54].

4.7 Global and local health crisis

Health crises can also affect both the provision of care and interaction with the broader community due to factors such as stigma, discrimination, and fear of contracting an illness. This section reviews the effect of the COVID-19 pandemic, as an example of enforced isolation, and HIV, as a long-term epidemic that results in death in the absence of effective medication, both being public health challenges that can affect caregiver loneliness.

COVID-19 was a health crisis that entailed enforced isolation for a number of months to prevent the spread of the disease that resulted in loneliness for both the care-recipient and caregiver [25, 55]. While the duration of the social isolation was of short duration, the at-risk categories of the elderly and those with compromised immune systems in particular were advised not to see their families for an extended period. For care-recipients who enjoyed the company of friends and family members, their sole support then became the caregiver, who had to provide additional emotional support when family contact was not possible. This placed an additional stress on the caregiver, who then had to provide for all their emotional needs, and could not take a break or vacation. During the pandemic, individuals did not necessarily experience loneliness due to lack of companionship, but rather as they could not meet friends and social groups who provided various types of support, leading to feelings of social disconnection and loneliness [56].

Studies [11, 57] highlighted that loneliness during the initial stages of the pandemic was influenced by factors related to the absence of social support, which affected caregivers well-being, and increased cognitive decline in care-recipients with dementia [11]. Caregivers increased loneliness was linked directly to their caring role, with high anxiety levels, the loss of engagement in formal activities and the cognitive state of their patients. However, other studies highlight that living with care-recipient with dementia during the pandemic could potentially serve as a safeguard against loneliness for those who might otherwise have been living alone [23, 25, 58].

As a continent, Africa has the highest incidence of HIV/AIDs, the lack of information about the virus, its transmission, and associated disease, resulting in some people still experiencing stigma and discrimination, being ostracized by their families and communities [59]. The absence of antiretroviral (ART) medication results in the progression to AIDs, which is associated with weight loss and high fever, these being visible signs of infection. The end stages of the disease require extensive caregiving, often a family member, with care being required to ensure that they also do not become infected. Many of those infected are young and middle-aged who have children, the sadness for the caregiver not only being the loss of their loved one, but the knowledge that they will likely need to take on the additional responsibilities of childminding, adding to their emotional stress [60]. The sadness of caring for a loved one who is clinically very ill and who will die can be traumatic for the caregiver, the pain of the pending loss adding to their loneliness, specifically in the absence of assistance with the caring responsibilities.

5. Managing loneliness

For the many caregivers who live with the relative needing care, their responsibilities are a full-time undertaking, in addition to their other household tasks, which can result in tiredness, exhaustion, and the need for time off. In those homes where there is no support, support mechanisms need to be found that are accessible and affordable. This section reviews a number of options that caregivers can consider to ensure that they can provide the required care over the anticipated time that it will be needed for. These include respite, needs assessment, self-care behaviors, recognition and appreciation, electronic health tools, caregiver support networks, and spirituality. The final section deals with practical implications of findings.

5.1 Respite care

One of the ways for caregivers to get some relief from their ongoing responsibilities is for them to access respite care this being opportunities for caregivers to have additional time to themselves, access organizations that offer emotional support, and provide skills to improve the care situation and enhance their well-being [61, 62]. While informal caregiving reduces the financial cost of social care for the government by keeping them out of funded homes and hospices, it is unlikely to receive social or financial support from the state when they take on these additional responsibilities [37].

Scholars note that respite care for caregivers to enable them to take a break from their responsibilities significantly reduced loneliness and other forms of social isolation or invisibility [15]. Such opportunities enable them to have time for themselves, including to have medical checkups, and to address their psycho-social and spiritual needs. It also gives them the opportunity to reflect, reassess, and respond to personal issues that may have been neglected as a result of their caregiving responsibilities [28]. It is therefore important for family members who are not directly providing care to offer to stand-in for caregivers on a regular basis to give them a rest from their often physically and emotionally demanding tasks.

5.2 Needs assessment

Caregiver needs are likely to vary, depending on factors such as their financial situation, geographic location (urban/rural), religion, socioeconomic status, and cultural values, making an assessment of their needs important to enable interventions to be tailored to address them. Family members, friends, community leaders, and social organizations are best positioned to identify the unmet needs of caregivers for social connections and to make suggestions or take action to address them [43]. Health-promoting efforts through the media and health facility staff need to be advocated for caregivers to enable them to sustain healthy living and to make other family members aware of their needs.

5.3 Self-care behaviors

Caregivers have adopted various types of self-care behaviors to help them cope during difficult times, including exercise, participation in support groups, doing meditation, [63], getting enough sleep and rest, and avoiding smoking and consuming alcohol [64]. Self-care behaviors have been found to promote good health and improve the quality of life for family caregivers. Those who adopt limited or no self-care behaviors often experience caregiver stress, mental and emotional health issues, and unmet needs, which negatively affect their overall health and quality of life. Being able to take time for themselves, either at home or away from their responsibilities, with the help of extended family members, including children, grandchildren, or significant others will enable them to regain strength to return to their caregiving duties.

5.4 Recognition and appreciation

It is very likely that a family member serving as a caregiver for an elderly person will undergo emotional distress, resulting in significant caregiver strain due to their strong emotional connection [5], the absence of recognition or appreciation for the role they play being potentially traumatic. Extended family members need to recognize the significant role caregivers play and appreciate them regularly. Recognition can be demonstrated in the form of providing emotional and informational support, such as information that may assist in managing loneliness and other emotions [5].

In addition, asking about their needs, identifying when they are socially isolated, and making an effort to provide resources for social connectedness may well be appreciated by the caregiver [43]. Family members must check on them regularly to ensure that they keep their doctor’s appointment and other health professional’s appointments to enable them to take care of themselves [65]. Building a strong relationship with the person needing care can also assist in understanding both parties’ frustrations and needs, with open communication being important to negotiate time constraints, stress, and how to manage loneliness [61].

Although my brothers-and-sisters-in-law did not appreciate our efforts, my father-in-law did. He demonstrated kindness, was cooperative with caregiving, and understood the complexities of care provided to him. He engaged the power of storytelling to relieve me of stress, often referenced inspiring words from the Holy Bible and sang hymns to ameliorate my feelings of worthlessness.

5.5 Electronic health tools or mobile health applications

Globally, there is a significant increase in the use of technology for a variety of purposes, such as Mobile Health Apps (mHealth Apps), to address health issues such as weight loss, cessation of smoking, and healthy eating. Healthcare providers are also encouraging their clients to use them to improve disease management and health promotion purposes, as it is free and available online. The mHealth application was also developed to empower caregivers to make informed health-related decisions and communicate with healthcare providers, as one category of those who use the sites. Recent studies documented the benefits of these mobile applications, including providing relevant health and medical information to caregivers and patients [66, 67].

mHealth apps provide information to caregivers by reviewing various condition that they might develop, such as stress reduction and health promotion strategies [67]. It is an online support group, where caregivers can ask questions through a secure chat process, with responses being provided in real time. However, in order to benefit from these health apps, caregivers must have access to a smart phone and Internet data, which can be difficult to obtain or expensive in low-income countries and rural areas. This might be a barrier to caregivers who cannot afford additional expenses due to the cost associated with caregiving. Offering health information and advice to caregivers using trustworthy, science-based mHealth apps and smart devices could be an effective health promotion tactic. Healthcare providers and policymakers should advocate for validated and efficient mHealth apps specifically for caregivers to promote their use and optimize health advantages for both caregivers and care-recipients [66].

5.6 Caregiver support networks

While caregiver’s need to receive both practical assistance and emotional support in order to accomplish their daily tasks as a caregiver, employer, family, and community member, the former may not be available from family members, and assistance may need to be sought from friends [6]. Support networks play a vital role in assisting caregivers and their families, providing help with health care and household tasks, and addressing financial and emotional concerns. These networks can be categorized as either informal or formal, the former including family members, friends, neighbors, and social groups, such as churches, linking caregivers to community resources. Formal support networks are provided through organizations established by public policies, such as health services, hospitals, long-term care facilities, as well as government and non-government programs. Some formal networks provide training in caregiving tasks and obtain assistance from professionals in fields of nursing, medicine, psychology, and social work [37].

Formal Caregiver Support Networks globally are intended to assist informal caregivers who may work outside the home while also providing elderly care at home. A systematic review classified the needs and resources of caregivers who are also employed outside the home using the individual, group, leader, and organization (IGLO) model. The model outlines various ways in which workplaces can support caregivers, such as through peer support, managerial guidance, organizational policies, and cultural considerations. Within organizations, support for caregivers can be designed and provided at various levels, including those with limited resources, such as in the form of flexible working hours [36].

5.7 Spirituality

Caregivers who experience spiritual well-being tend to have improved quality-of-life outcomes [47] as it helps to relieve the stress associated with providing care on a daily basis. In addition, the belief in the existence of a higher purposeful force, practicing rituals or spiritual ceremonies, praying, studying religious texts, and engaging directly with nature were found to nurture optimism, satisfaction, and coping among caregivers [68]. Another aspect of spirituality is the social and emotional support obtained from their religious communities, where simply being shown concern for their well-being helps caregivers to feel heard and valued [69]. Some African religions regard children with disabilities as a gift from God, while others regard them as a curse, putting additional pressure on the mother, who is often blamed for such an occurrence [70]. This can place an additional burden on the mother, who becomes the caregiver, as she feels responsible for the child’s condition, the presence of blame increasing her sense of isolation and loneliness.

6. Practical implications of the findings

A number of measures need to be implemented at family, society, and governmental levels, in resource-constrained countries in Africa in particular. This can greatly reduce the mental, social, and physical challenges linked to their caregiving duties, simply acknowledging the important role they play in making them feel less invisible, alone, and lonely.

At a government level, policies need to be developed and implemented to ensure that training of healthcare staff is undertaken to provide support to caregivers at primary healthcare level, in particular, but also in clinics and hospitals where specialized staff are accessed, such as rehabilitation services for disabled persons.

At the clinic level, advice and training need to be provided, possibly in groups on specific days of the month, at which caregivers can meet, share experiences, and receive support and instruction from each other and the staff. Where community health workers are available, they need to be mandated to provide such care and support.

At a community level, more public health messaging, through mediums such as community radio, needs to expose the realities of caregiving and provide advice and support through weekly interviews with a range of specialists in a variety of areas. Given that this can happen to any family, preparing people with family members who may require care in the future will assist in alleviating the stress of being prepared, and not knowing what resources can be accessed and from whom. It will also expose the realities associated with the physical, social, emotional, mental, and spiritual roles that the caregiver plays.

The next level is that of the extended family, who need to be involved with the care responsibilities and not leave everything to the caregiver. They also need to be available to relieve caregivers from their responsibilities to enable them to focus on their own state of well-being, which they may neglect due to their many responsibilities. Receiving genuine care and empathy from extended family members, along with their acknowledgement and support, is crucial for preserving the dignity of caregivers tending to relatives at home.

The caregivers’ immediate family also need to be informed and involved, to enable them to understand the implications of the pending changes, how their lives will be affected, and how they can pull together to make the new arrangements as pleasant as possible for themselves and the care-recipient. Preventing resentment, specifically among children, who may need to share their mothers time with someone else, is essential for them not to feel neglected and to understand that this is a reality that many families face.

It is therefore essential at the start of the caregiving to meet with family members and friends who may provide support, to establish a common understanding of the current status of the person, their caring requirements, and the various roles and responsibilities. The discussions of this meeting need to be recorded as a record of what was understood and agreed to by all those involved, possibly also the care-recipient. The areas that need to be addressed include:

• Health status, e.g., current conditions, medical requirements, costs, access, monitoring changes, and who will be responsible.

• Healthcare needs, e.g., food, personal hygiene, costs, and who will be responsible.

• Financial affairs, e.g., contributions, management, expenditure, and responsibilities

• Family support, e.g., caregiver respite care, meeting spiritual needs

• Duration of care, and what will happen if the caregivers’ circumstances change and they can no longer provide such a service.

• Type of care required, e.g., care such as bathing, administration of medication, blood sugar, and blood pressure check.

• Cultural considerations, including spirituality, so that the caregiver is aware of any expectations that they cannot accommodate, which the family needs to know before a crisis arises.

• Caregiver respite, this is related to time away from their caregiving responsibilities, either of them being away from home, or the care-recipient spending time at another family members home.

Such meetings should be held annually to monitor any changes in the situation and enable a re-evaluation of the finances in particular, as that can be an area of contention. The intention of such a record is to set out the parameters at the start of the caregiving, to monitor changes that take place over time, and as a record that can be referred to regarding decisions about what was to be done and by whom. This will prevent any unfounded accusations being leveled at the caregiver by the family and protect the care-recipient in the event that decisions agreed to by the family are changed by the caregiver. Calling annual review meetings will serve to remind the family of their ongoing responsibilities, the need to care for the caregiver, that circumstances change, and that caring for a family member is not necessarily an easy undertaking.

7. Conclusion

Caregivers can face many challenges while providing care for family or loved ones, the lack of acknowledgement, and support by others often resulting in their experiencing loneliness and other forms of caregiver burden as a consequence of providing intensive, substantial, and prolonged care. The many millions of silent caregivers accept their circumstances as part of their family obligations, which does not necessarily mean that it is easy for them. The myriad of emotions that are associated with providing care can result in a feeling of loneliness when the person is not heard, understood, or appreciated. Providing them with support is essential if the often-long-term obligations are not to negatively affect their own health and well-being, given that it can be a 24-hour-a-day responsibility.

Making time for themselves, being with their families and friends, and engaging in their normal social and economic activities are key to ensuring their well-being. Providing them with access to social, online, and facility-based support networks is essential to preventing loneliness, with the government needing to promote the provision and uptake of support services through public health messaging.

Maintaining positive relationship with the care-recipients, praying often, and listening to spiritual podcasts are some of the coping mechanisms I adopted. In addition, my siblings assisted me as often as time permitted them, especially during weekends, which enabled me to spend time with my own small and growing family, go grocery shopping, and take care of my household responsibilities. This caregiving experience strengthened my relationship with my father-in-law and gave me insight into the process of aging. It made me more tolerant, kinder, and less stressed about the small stuff, and I became more appreciative of informal family caregivers who provide care to their relatives who needed care.

Conflict of interest

The author declares no conflict of interest.