Caring in Adversity: Experiences of Caregivers Providing Day-to-Day Personal Care and Support for Activities of Daily Living to Children with Physical Disabilities in the Hardap Region of Namibia

Abstract

Caring for children with physical disabilities can be a daunting responsibility, often placing significant financial, psychological, social and health-related strains on the primary caregivers. This qualitative study explored the experiences of caregivers caring for children with physical disabilities in the Hardap region of Namibia. Using purposive sampling, twenty caregivers were selected as participants in the study. Data was collected using semi-structured interview schedules. Following the interviews, the data were manually analysed and categorised into distinctive themes and sub-themes and summarised in the final report as verbatim quotations. Study findings reveal that caregivers are motivated and determined to provide optimum care for children with physical disabilities under their care by acquiring assistive devices for them and assisting the children with activities of daily living. However, poverty and the general shortage of assistive devices, mostly wheelchairs, provide adverse conditions that are inimical to the development of children’s functional independence in daily living tasks. The burden of carrying the children was noted to be potentially deleterious to the caregivers’ physical health. The study concluded that providing assistive equipment for the children will ease the caregivers’ burden of care while equalising socioeconomic opportunities for both children with physical disabilities and their caregivers. The study only covered a small sample size in a small geographical area of Namibia. Therefore, interpretation and generalisation of the findings need to account for the specific context in the Hardap region of Namibia. Therefore, there remains scope for conducting further research with a larger sample size and one that is more geographically representative of Namibia.

1. Introduction

The World Health Organisation (WHO) defines disability as the restriction or lack of ability to perform an activity in the manner or range considered normal for human beings [1]. About 16% of the world’s population is currently living with a disability [2]. According to Chibaya et al., there were 98,413 people with disabilities in Namibia, making up approximately 5% of the population [3]. Disability is not a phenomenon peculiar to Namibia; it has been reported that approximately 690 million people live with disabilities in Asia and the Pacific [3]. The number of children with disabilities in Namibia was estimated to be approximately 27,000, with most of them receiving sub-optimal care due to multiple socio-economic constraints at the individual, familial, community and society levels [4]. At the household level, caring for children with physical disabilities can be a daunting responsibility, often placing significant financial, psychological, social and health-related strains on the primary caregiver [5,6,7]. In the Namibian context, Shumba and Moodley argue that some of the difficulties arise from poor and inconsistent implementation of policies for people with disabilities [8]. They cite poor access to rehabilitation services, assistive devices, medical care, education, and employment opportunities for most people with physical impairments in the country [8]. Although they acknowledge that the government has made significant progress to promote the livelihoods and social protection through disability grants, there remain assessment inconsistencies by the doctors [8]. Consequently, some of the eligible beneficiaries have been left out of the programmes [9]. There have also been reports of some caregivers misusing disability grants intended to support children with disabilities [10]. Amadhila et al. summarised barriers to inclusivity for people with disabilities in Namibia as stigma, discrimination, limited socio-economic opportunities, weak political support, poor access to healthcare, limited education opportunities and restricted access to physical infrastructure [4]. In isolation and collectively, these factors pose considerable hardships for most caregivers of children with physical disabilities [9]. Despite these difficulties, Chibaya et al. commended the anecdotal resilience and resourcefulness of some caregivers who have ventured into paid employment and entrepreneurial endeavours, including fashion and design and food vending, despite the odds stacked against them [3].

1.1. Background

1.1.1. Caring for Children with Disabilities

Gull et al. define a primary caregiver of a child with disabilities as the person with the most responsibilities for the day-to-day decision-making and care of that child [11]. Providing care or caregiving involves assisting the child in performing activities which are necessary for survival, human functioning or social participation, or performing such activities for a person who is unable to do them [12]. Depending on the extent of assistance required and resources available, caring for children with disabilities will involve variable amounts of physical work. For example, Winters et al. note that physical work may be required to assist a child in moving from one point to another, dressing, bathing, eating and drinking [13].

The tasks of minding children with physical disabilities can be physically and emotionally strenuous. However, the responsibility can be experienced as special and rewarding by the carers [5]. According to Gull et al., the experience of caring for children with disabilities is determined by a dynamic interaction of variables relating to the nature of disability and other contextual household factors [11]. These variables include socio-economic factors, child characteristics [i.e., child behaviour and functional status], care-giving demands and caregiver perceptions about formal care, caregiver intra-psychic factors, social support, family function, stress management and caregivers’ psychological and physical health [14,15,16]. Results from a study by Alnazly and Abojedi on caregiving revealed that the most important predictors of caregivers’ coping capacity are related to child behaviour, caregiving demands and family functioning [6].

1.1.2. Roles of a Caregiver

Several people may assume the caregiving role for children with disabilities, depending on household characteristics and the level of social support available to the household. Caregivers can be immediate or extended family members, neighbours or friends who may take on the caring roles formally or informally. Due to the demanding nature of caring for children with additional needs, considerable stress can be placed on the caregivers to the detriment of their physical and psychological well-being, as pointed out by several scholars [17,18,19,20]. Sakwape et al. [19] and Torres and Ohajunwa [20] describe caregiving as both extremely taxing and exhausting, with a multitude of contributing factors affecting the caregiver’s well-being, such as coping mechanisms, burden perception, stress, burnout, and compassion fatigue (physical, emotional and psychological exhaustion due to chronic or intense caregiving). Effective coping strategies become paramount given the elevated risk factors and expectations associated with caring for the children in highly adverse settings characterised by poverty, stigma and discrimination [21,22,23]. This complex interplay of variables can create situations where the caregiver faces substantial stress and burden relating to the caregiving responsibilities. These negative experiences are not isolated from the other responsibilities each caregiver carries daily and, consequently, have a continuous and cumulative effect [15,24].

According to Aktan et al., the primary caregiver needs to understand and appreciate their roles and responsibilities in caring for children with disabilities because this affects the carers’ emotional, mental and physical capability to do their job well [25]. This is very important because the caring dynamic indirectly creates a carer/nurse and patient relationship. By necessity, despite the heavy burden of caring, the caregiver cannot take on the role of a dependent themselves, as the two roles are unable to co-exist. It becomes incumbent on the caregivers to employ robust coping strategies rather than the adoption of the patient role, as this will leave the children worse off [23,26]. Ya-Otto et al. note that the role of caregiver is embodied with conflicts at various levels, which require caregivers to develop effective coping strategies for their own good and the benefit of the children under their care [23]. By assuming the role of the caregiver, the individual locates themselves in a role in which their needs are secondary to those of their patients.

1.1.3. Role of the Family in Caregiving

Larson and Miller-Bishoff note that family life is often interrupted in major ways when there is disability in the family [27]. Caregiving responsibilities may lead to changed or abandoned career plans. Makura, in a study on caregiving experiences, observed that female family members are more likely to take on caregiving roles and thus give up or change their study and/or work plans [28]. In many African societies, men tend to take on the culturally ascribed role of providing for the family financially and materially while women and girls perform caring and nurturing tasks [29,30]. Studies by Swai et al. and Van Rooyen showed that some caregivers need to work part-time to supplement the family income and rely on family members, neighbours and friends to provide care to the children with disabilities [31,32]. Some female caregivers desired to return to work but could not because of the frequency and intensity of care needed by the child, even when the child was enrolled in school. The tensions between sufficiency of care, sufficiency of family income, and desires to work were complex and created conflict in the affected households that sometimes compromised the quality of care to the children concerned [33].

As noted by Sadiki and Kibirige, the burden of care is usually higher on mothers because in many African settings, childcare is perceived as a feminine responsibility [16]. For example, mothers usually become overly involved with the child with disability while fathers often are under-involved and instead immerse themselves in supposedly masculine work or leisure activities [34,35]. This pattern is usually associated with more marital conflict. For example, researchers in one study from Turkey reported that mothers were often blamed for having a child with a disability and were held responsible for their care [35]. In Ghana, Opoku et al. found that some mothers were resentful for not receiving enough help with childcare from their husbands [18].

1.2. Factors Affecting Caregiving

The quality of care provided to children with disabilities hinges on several factors. These include the age and physical and mental health of the primary caregiver, their level of knowledge, the nature of the child’s disability, and the financial cost of caregiving.

1.2.1. Physical Health of Caregivers

Taking care of children with disabilities involves considerable physical exertion, which could contribute to carers experiencing both physical and mental fatigue. Carers (who are mostly mothers) must meet a range of needs for the children through efforts that demand physical stamina [31,36]. The physical health of the caregiver is directly and positively related to the well-being and development of the child with disabilities being cared for. Sadiki et al. found that carers of children with physical disabilities who need assistance with physical transfers have been found to have higher prevalence of back pain and decreased physical functioning compared with carers of children with chronic medical conditions who do not require such assistance [16]. Lack of access to assistive equipment may mean that caregiving in low-income countries requires more physical work and manual handling of the children than it does in high-income countries, hence its association with a greater risk of injuries or physical health disorders. Older caregivers are associated with a higher incidence of chronic health conditions that militate against their caregiving capacity [11]. Older primary caregivers in poor health are especially susceptible to the physical and psychological strains of caregiving, including higher vulnerability to depression [15].

1.2.2. Caregivers’ Mental Health

Scherer et al. found that parents of children with disabilities reported poorer self-rated mental health, greater depressive symptoms, and more restrictions in instrumental daily living activities than parents of typically developing children [37]. In another study, Buthelezi and Mawila found that parent carers believed that it was their responsibility to sacrifice their own well-being for the benefit of a child with disabilities [38]. This may include sacrificing leisure time, resting and socialising, which may negatively impact their mental health, especially over a long period of time. Caring for a child with special health needs may increase stress levels because of elevated medical expenses, time demands, physical care, and worry about the child’s future [39]. According to Masulani-Mwale et al., psychological distress, namely anxiety, depression and insomnia, is reported to be twice as high for parental caregivers of children with disabilities [40]. The mental burden is related to caregiving responsibilities and is the result of dealing with disruptive behaviours, sleep deprivation, stigma and providing emotional assistance.

The mental health of the carer can also be negatively affected if they feel guilty about not living up to idealised norms about being a worthy carer who can provide for the child’s needs [11]. The mental health of the carer is also compromised when carers experience guilt, blaming themselves for the child’s disability [17]. This can result in the carer having anxiety about the child’s current condition and prospects. Moreover, caring for a child with physical disabilities may result in compassion fatigue in the caregivers, characterised by exhaustion and dysfunction within biological, psychological and social domains emanating from deep feelings of sympathy and sorrow for the child [41]. Compassion fatigue can also be a result of chronic exposure to stress due to the absence of relief from responsibility, burdens and inability to decrease the compassion stress and hence creates a disruption or change in a person’s functioning or lifestyle [18]. Compassion fatigue can be detrimental as it leads to a sense of helplessness, confusion, isolation from family and friends, hyper-arousal, sleep disturbances, concentration difficulties, agitation, irritability, hyper-vigilance, distress, a decrease in pleasurable activities and contagion [21,22].

1.2.3. Caregivers’ Level of Knowledge

Caring for a child with a disability often requires specialised knowledge, extensive collaboration with health professionals, and the acquisition of skills by caregivers or parents that are usually associated with professional health care work [19]. Caregivers must often perform complicated tasks, such as administering complex medical treatments and attending numerous medical appointments with their child. As noted by Van Rooyen, in most cases, caregivers feel unprepared to provide care, have inadequate knowledge to deliver proper care, and receive little guidance from the formal health care providers [42]. Caregivers of children with disabilities reported spending significant amounts of time negotiating within the health and education systems to ensure their child’s needs were met. Whenever a new need arose, the parents drew on their prior knowledge and experience, which influenced how they managed the situation. Consequently, carers must constantly update their knowledge and skills to keep up with the children’s growth, development and sometimes regression needs [18].

1.2.4. Nature of the Child’s Disability

The nature of disability can be related to the way caregivers of children with physical disabilities access medical expertise and care. Upon diagnosis, a new child could be severely disabled, and this could often be extremely stressful and can instil strong feelings of being overwhelmed and powerless regarding the future [43]. Christinah and Obert state that the initial contact between the parents and the health professionals may determine how the parents are going to cope with the kind of disability that the child has [44]. Once the disability is classified, finding suitable and appropriate care for the child can be a struggle for most families because of the child’s specialised needs. The stress can emanate from the inconsistency between the child’s physical size and developmental capacity, the visibility and nature of the disability, and stigmatisation from the people in the community [4]. While these children develop and the disability becomes more visible and pronounced, parents are often confronted with an increase in child management tasks that lead to further psychological and emotional challenges.

1.2.5. Age of Caregivers

Marian et al. argue that the age of the parents when a child’s disability is diagnosed is also an important factor consideration on how the family responds and copes [14]. A teenage parent is at greater risk of experiencing poor adaptation because their own developmental needs are still prominent and they are less likely to have the maturity and resources to cope with the added demands of the child. Older parents may lack the stamina for the extra burden of care required, and they may fear for their own mortality and be concerned about the continued care of the child after their own death.

1.2.6. Limited Access to Assistive Devices, Rehabilitation and Government Resources

According to Moosa-Tayob and Risenga, access to assistive devices, rehabilitation education and government resources are important factors influencing caregiving burden and intensity of care [21]. Common assistive technology includes mobility aids [wheelchairs, scooters and canes], adapted utensils for daily living activities and more modern communication software. Studies by Hashemi et al. [45] and Makura [28] show that there is a general lack of basic manual assistive devices like wheelchairs and crutches in many parts of Africa, with the shortages more pronounced in rural areas. Due to poverty and unemployment, most families in these areas fail to afford the devices, leaving the children struggling to engage in activities of daily living. Ndadzungira [9] observed that while the Namibian government provided wheelchairs, the children quickly outgrew the wheelchairs and getting replacements was very difficult. In the same study, it was also noted that when some of the wheelchairs broke down, no repairs or replacements were done. In many similar African settings, shortages of assistive devices are accompanied by poor rehabilitation services because the government facilities that cater for these services tend to be concentrated in urban areas [19]. Confronted by these limitations, caregivers bear increased physical demands to assist the children with activities of daily living like mobility, feeding, bathing and toileting [8].

1.3. Purpose of the Study

The purpose of the study was to explore experiences of caregivers providing direct care and support to children with physical disabilities in the Hardap region of Namibia. This was accomplished by answering the following research questions:

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What roles did caregivers play in assisting the children with activities of daily living?

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What challenges did the caregivers experience in fulfilling these roles?

2. Materials and Methods

2.1. Study Population and Sampling

The study population consisted of primary caregivers [parents and guardians] of children with physical disabilities living in the Hardap region of Namibia. The Hardap region was conveniently selected because the PI worked in the region. Purposive sampling was used to select a sample of 20 participants. This type of sampling is centred wholly on the judgement of the researcher, in that a sample is made up of elements that include most of the characteristics, or typical attributes of the population [46]. The participants were drawn from different areas in the region. The principal investigator (PI) worked with local health personnel to identify caregivers of children with arthritis, cerebral palsy, multiple sclerosis, epilepsy and muscular dystrophy. The full inclusion and exclusion criteria adopted to minimise bias in data collection are summarised in the

Table 1. Inclusion and exclusion criteria for participating in the study.

Inclusion Criteria	Exclusion Criteria
Parent, caregiver or guardian of a child[ren] with physical disabilities.	Parent, caregiver or guardian of a child or children with other types of disabilities.
Parent, caregiver or guardian with full-time caring responsibility for the child[ren] in performing ADL.	Parent, caregiver or guardian with part-time caring responsibility for the child[ren] in performing ADL.
Parent, caregiver or guardian ordinarily resident in Hardap.	Parent, caregiver or guardian not ordinarily resident in Hardap.
No prior personal or professional engagement with PI.	Prior personal or professional engagement with PI
Conversant and willing to do interviews in English.	Inability or unwillingness to do interviews in English.

ADL = activities of daily living.

.

2.2. Data Collection

Data were collected by the PI using face-to-face interviews with the participants; the interviews were conducted in English. Each interview took approximately one hour. The interviews took place at the caregivers’ homes. Only two of the interviews took place at a day care centre for children with disabilities. The PI was a qualified social worker under university faculty supervision. As part of his university education and social work training, the PI was trained in conducting one-on-one interviews. The PI also received training and mentoring on qualitative research before the data collection and analysis as part of his studies at the university. Data were solely collected by the PI using a semi-structured interview schedule; all questions were in English. These allowed participants time and scope to reflect on their experiences regarding the children’s mastery of or challenges with activities of daily living (ADL).

With the permission of the participants, the PI also used an audio recorder to record the interview sessions verbatim. This ensured that a full account of the interview was captured and allowed the researcher to concentrate on asking probing questions. Field notes also formed part of the data collection process and helped the PI to remember key details from each interview. Data saturation was achieved after interviews with twenty participants. As such, data collection stopped after the twentieth interview.

2.3. Data Analysis

The recorded tapes were encoded in preparation for transcription. This data was then transcribed manually by the PI (A.N). Another researcher randomly selected five transcribed interviews to check for accuracy (S.G.). The PI then shared the transcripts with two other members of the research team (S.S and M.C). After agreeing on the inter-coder agreement, the research team (A.N, S.G, S.S, and M.C) coded data individually into themes and sub-themes. The researchers carefully read and reread the transcripts, looking for key words, trends, and themes. Although simple English was used in conducting the interviews, the researchers took extra care during the analysis phase to ensure that slang, jargon, and culturally specific expressions were accurately interpreted and reflected the participants’ intended meaning. The key themes were identified and transformed into codes. Thematic content analysis was used to analyse data. According to Bryman [47], thematic content analysis entails identifying, analysing, and reporting patterns [themes] within data and deriving interpretive meaning. This allowed the data to be interpreted and for trends to be identified in the findings. Thematic analysis allowed the researchers to identify the emergence of main and sub-themes. Following this, the researchers met to compare the results before agreeing on the final themes emerging from the study.

The researchers strove to ensure the quality of collected data by putting in place measures to achieve the trustworthiness of the data. These include measures that enhanced credibility, transferability, dependability and confirmability of the study. Credibility was met in this study by ensuring that the research was conducted ethically and professionally. To ensure transferability, the researchers gave a highly detailed description of the research methods, the situation under which the research was done and how the data was gathered. To ensure dependability, the researchers did not go into the study with predetermined answers or ideas. The analysis and interpretation of data were based on set theories and explorations of other studies already undertaken. The researchers were able to report in greater detail each process of the study, thus ensuring that an external researcher is able to repeat the inquiry. Confirmability refers to how the research findings are supported by the data collected. The quality of results was enhanced through continued enquiry and engagement with the participants. The interpretation of the results was done through reference to the literature, confirming findings by other authors.

2.4. Ethical Considerations

Bryman notes that research ethics refers to the scientific principles and guidelines that researchers must uphold to ensure the integrity of the research process and the safety and well-being of the research subjects [47]. The study was conducted in accordance with the Declaration of Helsinki and approved by the Institutional Review Board of the University of Witwatersrand, South Africa (protocol code H15/07/44). The following ethical considerations were upheld during the research process:

According to Creswell and Poth, research participants must be given all the information pertaining to the study before making the voluntary decision to take part in the research process [48]. The participants were therefore given detailed information regarding the formulation and goals of the study and were asked to sign informed consent forms only if they had no reservations about being research participants [46]. Therefore, no force, deception or coercion was used by the PI during data collection. The PI informed the participants that they could withdraw from the study at any point without any recriminations [49].

Obtaining informed consent entails providing the participants with detailed and accurate information about the goal of the investigation, the investigation procedures, the possible advantages, disadvantages and dangers that may be associated with participating in the research [46]. The PI provided the participants with detailed information on the research methods, possible outcomes, discomforts and the fact that the study was for academic purposes. The PI ensured that participants consented based on their full and accurate understanding of the study [50]. Participants were informed that the interviews would take approximately an hour. The participants who were willing to become research participants were asked to sign a consent form.

As Creswell and Poth pointed out, social research should not injure or disadvantage research subjects in any way [48]. This means that the research purpose should be explained, and the participants should be informed about the potential risks that may emanate from their involvement in the research. The potential risks related to the study were emotional and psychological discomfort. Therefore, in line with the approved safety protocol, the PI made counselling arrangements in case participants showed signs of emotional or psychological breakdown during the interview. No emotional distress was noted in the participants in the study; as such, none of them was referred for counselling. Nevertheless, they were informed of the availability of a free counselling service in case they needed it. During the interviews, the PI was cognisant of emotions shown by the participants and would give breaks in between and ask for consent to continue with the interview from time to time during the session.

Anonymity and confidentiality refer to the ethical process that guarantees research participants’ private information will not be disclosed without authorisation [50]. The PI explained to the participants that the field notes, audio recordings and verbatim transcripts would be de-identified. Physical field notes were stored in lockable cabinets in locked offices, while digital files were stored on a password-protected computer. The participants were also assured that numerical identities would be assigned in place of their real names at the time of writing the research report. This aligns with Lune and Berg’s argument that confidentiality places a strong obligation on the researcher to guard the information provided to them in confidence [51]. Therefore, no discussions on the participants or issues arising from the interviews were conducted outside the formal research process.

Debriefing involves discussions with research participants to learn about their experiences regarding participation in the study [49]. This is especially important if participants experienced harm through their participation. Wadsworth states that debriefing sessions after the study, during which subjects get the opportunity to work through their experience and its aftermath, are one way in which the researcher can assist participants in minimising possible harm that may have been done despite all precautions [52]. The PI thus took time to review and discuss the experiences of the caregivers and explored whether any harm befell any of the participants. Debriefing was provided to all participants and was incorporated within the one-hour interview session at the end of the interviews. Arrangements were made with the district social workers working in the region of Hardap to provide counselling services to caregivers, in case they expressed the need for the service. None of the caregivers expressed a need for this service since they stated that participation in the study did not affect them in any way.

3. Results

3.1. Demographic Profile of Participants

The demographic profile of the participants is presented in

Table 2. Summary of participants’ (caregivers) demographic data.

Participant Number	Participant Age Range	Relationship with Child	Marital Status	Education Level of Participant	Child’s Disability Diagnosis	Child’s Age Range
1	26–35	Mother	Married	Secondary	Arthritis	06–10
2	36–45	Mother	Divorced	Secondary	Muscular dystrophy	11–15
3	46–55	Aunt	Single	Secondary	Multiple sclerosis	16–18
4	18–25	Mother	Single	Tertiary	Cerebral palsy	01–05
5	46–55	Mother	Married	Primary	Cerebral palsy	06–10
6	26–35	Mother	Single	Secondary	Multiple sclerosis	06–10
7	56–65	Grandmother	Single	Primary	Epilepsy	11–15
8	18–25	Mother	Single	Secondary	Multiple sclerosis	01–05
9	36–45	Mother	Divorced	Secondary	Arthritis	11–15
10	46–55	Father	Married	Tertiary	Cerebral palsy	06–10
11	46–55	Mother	Married	Secondary	Multiple sclerosis	16–18
12	26–35	Mother	Married	Secondary	Muscular dystrophy	06–10
13	56–65	Grandmother	Single	Secondary	Cerebral palsy	11–15
14	26–35	Mother	Divorced	Secondary	Epilepsy	06–10
15	66–75	Grandmother	Widow	None	Cerebral palsy	16–18
16	56–65	Grandmother	Married	Secondary	Muscular dystrophy	16–18
17	46–55	Mother	Single	Secondary	Cerebral palsy	11–15
18	18–25	Mother	Married	Secondary	Epilepsy	01–05
19	26–35	Mother	Married	Secondary	Muscular dystrophy	01–05
20	26–35	Aunt	Single	Secondary	Cerebral palsy	11–15

below. The information collected related to the age range of the participants, relationship to the child with a disability, marital status, level of education, the disability diagnosis of the child, and the child’s age.

3.2. Caregivers’ Challenges with the Children’s Activities of Daily Living

Participants identified the following activities as constituting the care they provide for children with disabilities: provision of special aiding equipment, carrying the children, feeding the children, bathing them and taking them for medical checks. The study revealed that participants helped children with disabilities to have access to special equipment through government support. However, two carers reported they were not aware of government services and had not therefore approached the government for assistance. Such responsibilities as carrying, bathing and feeding were significant responsibilities as some of the children were incapacitated.

The variety of activities accomplished by caregivers covered the work required to respond to the physical, psychological, and social needs of the children. These tasks are described as activities of daily living (ADLs), which encompass personal grooming, bathing, dressing and feeding, translating to that of instrumental activities of daily living (IADLs), such as preparing meals, housework, and managing budgets [19]. Participants were asked to indicate the nature of care they provide for children with disabilities, and the following themes emerged.

3.2.1. Acquisition and Use of Special Equipment for Children with Disabilities

One aspect that emerged with respect to the nature of care was the acquisition and use of assistive devices for children with physical disabilities. Participants indicated that they sourced assistive devices such as wheelchairs, walking frames and crutches needed for the children’s mobility. The special equipment was vital in ameliorating the physical burden of otherwise getting the children to move around the household and community. The caregivers’ roles varied depending on the nature and severity of the child’s disability. Children in wheelchairs and walking frames needed more physical help, for example, pushing, than children who could walk on crutches. The latter tended to be more independent in their mobility and performing daily self-care activities. Participants’ accounts show that access to equipment like wheelchairs proved more difficult for some than others. Some families had more than one child with a disability; hence, such families needed more than one type of assistive device. The participants shared their experiences as follows:

I managed to get the wheelchairs from the local medical rehabilitation officer. We received one new wheelchair and a broken one, which I fixed to perfection for the use of the boy. I’m planning to get a special toilet seat as she is struggling more than the boy to use the toilet. Considering that she is growing and may need a bit of privacy away from the smaller children, who, at times, help her in the toilet. Such a seat with support beams will enable her to be more independent.

(Participant 10)

One of my children has a problem with the brain. The doctor said it is cerebral palsy. He can neither speak nor walk, so he just lies in bed. I had to seek help, and I applied for a wheelchair in Windhoek, and the physiotherapist helped me to get it on time. The wheelchair helps me a lot to move him around or even just let him sit outside. His other brother walks on his toes. I also had to get special shoes for him from Windhoek. These were made for him, and I will go back to collect them when they must be changed.

(Participant 7)

She has a problem with her spinal cord, so she cannot walk. The authorities said that they will provide a wheelchair for her. I tried to follow up in May, and they promised to provide some time in July, but nothing has happened.

(Participant 8)

3.2.2. Nutritional Care

Most of the caregivers shared that one of their biggest daily responsibilities was to feed the children. This was mostly noted for children who could not feed themselves due to missing limbs or another incapacitation. Some of the children needed special cutlery to assist them in feeding themselves. Such cutlery was not readily available to the children and their families. Some children did not have wheelchairs, which made them lie in bed all the time. Such children could also not feed themselves. Although other caregivers expressed despair and weariness regarding the feeding tasks, they also shared with satisfaction the skills they had learnt and improved on feeding the children properly through daily experience.

When he was growing up, I was informed that he was supposed to have a certain spoon he had to use, but I never got one. This is supposed to be connected to his limbs so that he can learn to feed himself. Since I do not have it, I therefore must feed him every meal, even though at his age he should be able to feed himself like normal children […] My child’s disability has prevented him from doing the normal things expected of children his age.

(Participant 1)

The child basically does nothing at home. He is just lying in bed all day as he does not have a wheelchair. So, I have to feed him every day so that at least he is healthy.

(Participant 17)

My child cannot do anything. I just keep him lying on the bed. He cannot even sit up, move around, speak or eat alone. I have the burden of feeding him, not only that, but now I have learnt to know when he is hungry or when he is full as I am feeding him. It was difficult to learn, but with time, I am now used to the work.

(Participant 2)

3.2.3. Challenges with Children’s Mobility and Transfers

Most participants stated that the children they cared for had mobility challenges on account of their physical disabilities. They further stated that the children were entirely dependent on them as carers to move around the household and the community. In the households, the children had to be manually carried to and from the living rooms, bathrooms and bedrooms. Participants further stated that children who were chronically bedridden needed constant shifting from side to side to prevent the development of bed sores arising from sitting or sleeping in one position for prolonged periods. Most caregivers lamented the unavailability of assistive mobility devices like wheelchairs and walking frames. This significantly restricted the mobility and movements of the children concerned and their caregivers. Whenever the primary caregivers needed to go out for other activities outside the home, they carried the children with them. This was because, in most cases, they had no other people to leave the children behind with. Participants further indicated that as the children got older, they became heavier and more challenging for the carers to carry around. Findings also show that some caregivers had previously accessed wheelchairs, but they lacked the skills and means to repair them when they broke down. When children outgrew the wheelchairs, most caregivers struggled to find replacements. In some cases, wheelchair safety was a big concern due to falling accidents that resulted in significant bodily injuries. The following are sentiments from some of the participants:

She does not have a special wheelchair that she can use. She used to have a government wheelchair, and because she cannot balance, she fell out of the wheelchair and lost her teeth. She cannot balance herself when she is sitting—it is difficult to travel with her because she does not have a wheelchair, so I must carry her around, and yet she is twelve years old. If I have to take her to the doctor or move her around the house, I still have to carry her.

(Participant 20)

Well, we need something that can make us comfortable. It’s always difficult when we need to go somewhere because I need to carry him, and he is a bit heavy for me. He once had a wheelchair, but now he has outgrown it. It’s now too small, and I don’t have another, and I am failing to get one.

(Participant 12)

I don’t know what to do since the child does not have any special equipment to use, and he cannot walk…. All I know is it’s a burden to me to move around... I don’t have any option but to just carry the child around. I have tried the government, but I still have not received assistance with a walking frame.

(Participant 14)

The participants caring for children with physical disabilities played significant roles in ensuring that the children in their care had the appropriate mobility equipment. Reports by the caregivers highlight that they took their responsibilities to promote the children’s mobility and functional independence seriously. Some caregivers pointed out with humble pride the satisfaction they got from leaving no stone unturned, seeking what they felt was best for their children’s growth and potential mastery of age-appropriate developmental milestones. Many caregivers, therefore, described their experiences of taking their children for regular medical check-ups and measurements at local health centres or hospitals when necessary.

Primary data from the research also indicates that some primary caregivers made numerous trips to the hospitals before acquiring the special assistive equipment for their children with physical disabilities. Many participants reported that the process was too bureaucratic and cumbersome, which compromised the quality of care provided to the children while they waited for the assistive devices. Despite the reported delays, many caregivers spoke of their determination and commitment to follow up with the government officials regarding their applications for the assistive equipment. However, one of the participants had not taken the initiative to apply for the assistive device, though she was aware that the child needed the device. The particular caregiver reported ignorance of the government support programmes for people with physical disabilities.

3.2.4. Children’s Personal Hygiene

Participants stated that the children needed help with basic hygiene activities, including bathing and toileting, because they had considerable limitations in performing the tasks themselves. The caregivers thus played an integral role in ensuring that the children’s hygiene needs were adequately met. All caregivers appreciated that maintaining good hygiene in the children was necessary to prevent diseases and sickness. While some of the children could do some self-care tasks, there were worries that the children could still not perform the tasks to acceptable standards of hygiene. In such cases, caregivers still had to do supplementary hygienic tasks [additional actions to ensure a high standard of cleanliness], and at times, with resistance from the children. The participants further reported that as children grew older, they felt it was awkward for their carers to shower them and take them to the toilet. Other caregivers also noted that bathing and cleaning the children became more difficult as the children grew older and bigger in body size. And yet, the caregivers continued to perform these tasks out of both responsibility and necessity to promote and preserve the children’s hygiene and dignity.

Like bathing, it’s a problem. He is not becoming clean when he bathes on his own……. like in a month, I have to take one week to shower him properly. Though he complains that he has grown up, I see that I have to assist him in bathing; otherwise, he will get sick from poor hygiene.

(Participant 1)

Like bathing or taking her to the toilet, the child always needs help. But most of the time I do it myself because it’s my responsibility, so I cannot rely on or ask someone to do that or demand or say do this, so I must take care of her.

(Participant 2)

I am the one who bathes him every day, but these days I can’t bathe him well because of his condition, and he is also too heavy. The child has grown up, which is why it is now difficult to do a very good job, but I try to bathe him well.

(Participant 7)

3.2.5. Medical Check-Ups

In the care continuum, it is very important to ensure that children with disabilities remain healthy, hence the need for periodic medical assessments and interventions. The participants stated that it was their duty to take the children for medical check-ups. Most of the children attended ongoing monthly appointments at the local clinics and/ or hospitals. Some caregivers reported that they had easy access to the health facilities as they were within walking distance. However, some caregivers had to travel with the children for more than a hundred kilometres to get to the hospital. This posed practical challenges because some of the children did not have the requisite assistive devices, like wheelchairs and walking frames. These caregivers also had to rely on uncomfortable, inaccessible public transport when travelling long distances. In cases of emergency, they had to hire private cars at exorbitant costs, even though such cars were not specifically designed to accommodate the children’s additional needs. These experiences and activities have been stressful for carers.

We receive the medication once per month, but for medical check-ups, I take him whenever he is not feeling well.

(Participant 7)

I normally take the child to the clinic for a medical check-up every month. The clinic is nearby, so we just walk to get there.

(Participant 12)

She spent a year in the hospital. When there are sicknesses, I take her to the hospital, and the distance is over 120 km. It’s difficult on the buses because they are not comfortable and at times overloaded. Sometimes, when she is suddenly sick [emergency], we must hire people’s cars because public transport is not always available when we need it. Hiring private cars is expensive, even when they are not special-purpose vehicles. People take advantage of your hour of need and charge very high amounts of money, and sometimes I had to sell livestock to pay for transport hire.

(Participant 13)

There was consensus among the caregivers that children with physical disabilities consistently need special care and medication, hence the constant visits to the health centres. Some participants reported that they attended the health facilities in the hope that their children would gain or regain their physical mobility. Such participants followed their appointment schedules religiously. However, some participants shared that they found the diagnoses and feedback from the medical staff stressful and discouraging, and hence they would only go to the health facilities in an emergency to seek treatment. Many caregivers also shared that their children had difficulties swallowing tablets, which led them to crush and dissolve the tablets in water before giving their children. In general, due to the children’s physical incapacities, the caregivers had the responsibility to promote treatment and medication adherence through directly administering or observing the children taking the medications as prescribed by health personnel.

3.2.6. High Financial Costs of Care

Most participants stated that caring for children with physical disabilities significantly increased household expenses, making it harder to cover basic needs. In most cases, the families affected depended on financial and material support from relatives, friends, and the Child Disability Grant (CDG) from the government. Family and kinship support was not always adequate due to general poverty and deprivation among family and community members. While the CDG provided financial relief to most of the affected children, many of the caregivers highlighted the bureaucratic difficulties in accessing the grant, which discouraged some potential applicants. The relief provided was also reportedly insufficient and left many carers scrapping and borrowing around to make ends meet. A few caregivers supplemented the budget for care through informal and small-scale business ventures.

I get money from the church where I fellowship, from my family and from my friends. It’s not like I have to lean on them; I have to find other ways of finding money. I need money, you know. The amounts are not fixed, but I try to make sure that she gets all that she wants in time. It’s a whole struggle every month.

(Participant 2)

The money issue is a challenge because, apart from their care, we also wish to live in comfort. We also have a few goats and need to buy farming needs, thus the monthly household income is not enough…When it goes extremely bad, we sometimes sell off our goats to fill the gaps.

(Participant 10)

Looking after my child has affected the family budget so much. My cousin, with whom I stay at the house, is not working, and you can imagine how much that costs. Though my mother is working, she is an alcoholic, and the pressure is just too much financially. We also struggle to get adult diapers in our town; they are only available in Windhoek, which is about 380 km away.

(Participant 7)

4. Discussion

While there are numerous studies on disability in southern Africa focusing on social aspects, the novelty of this research stems from its narrow and deliberate focus on the lived experiences of caregivers in providing direct care and support to children with physical disabilities in the Hardap region of Namibia. This study has thus brought to the fore insights into the accomplishment of activities of daily living for a potentially hidden population in hard-to-reach settlements. The study therefore has the potential to channel discourses on child physical disability in resource-constrained settings into the mainstream and public domains, thereby opening incisive channels for appropriate government and private sector policy and programme interventions. Potential downstream and derivative gains from such initiatives include direct material support (assistive devices) to the children to aid their mastery of activities of daily living while simultaneously reducing the burden of care on the caregivers.

Most caregivers (participants) in this study took active steps with varying degrees of success to acquire assistive devices for children with disabilities under their care. The caregivers appreciated their responsibility to ensure that the children they cared for had the right equipment. This often required taking the children for regular checkups and measurements to determine the correct sizes for the assistive devices needed. Primary data from the research indicate that the primary caregivers had to make several visits to the hospitals and health centres to get the special equipment. While some were successful in getting wheelchairs, walking frames and crutches provided by the government, many of the caregivers reported that they were getting frustrated by the long delays in receiving the equipment.

The caregivers seemed to find the process of getting the equipment from the government cumbersome. Buying the assistive equipment was not a viable option for most of the caregivers due to economic hardships and poverty in the households. Some caregivers shared that although they initially received the assistive devices, they encountered difficulties getting them replaced when they broke down or when the children outgrew the devices. Though uncommon, repairing broken equipment like wheelchairs was mentioned as a viable option by one of the caregivers who had successfully refurbished an old wheelchair. Likewise, in other studies, researchers made similar findings regarding caregivers’ difficulties in timely access to assistive mobility devices for children [5,10,11]. Consequently, the children concerned tended to miss out on basic mainstream services like health [11]. Findings in this study are therefore worrisome because the children with disabilities in the Hardap region face elevated risks of exclusion from current and future socio-economic opportunities due to restricted mobility. This is despite the best efforts of some of the caregivers to address the challenges. At the policy level, it is imperative that processes to acquire government support services for children with disabilities are streamlined and simplified through the removal of bureaucratic bottlenecks identified in this study. Free or subsidised public transport services could significantly reduce accessibility barriers revealed by the caregivers in this study.

This study builds on international literature by being at the forefront of raising wheelchair safety awareness in remote African settings. Current findings suggest that wheelchair accidents and injuries could be significantly underreported in rural and remote settings; there is scope for more research to establish the extent of the phenomenon. Among the families that received assistive mobility devices, wheelchair safety was flagged as potentially a serious concern for children with physical disabilities. One caregiver gave an account of their child falling out of their wheelchair due to poor balance and consequently losing all their teeth. Similarly, in their study, Chen et al. noted that tips and falls constitute the most common accidents associated with unsafe wheelchair use [53]. Tips and falls often result in injuries of varying severity [54]. Jipp [55] and Gavin-Dreschnack et al. [54] identified human/user characteristics, wheelchair type (manual or electric), wheelchair maintenance and environmental characteristics (even or uneven terrain) as the major hazards that could result in accidents. Among the human or user characteristics, people with disabilities were flagged for being at greater risk of wheelchair accidents. The same authors also emphasised the importance of adequate supervision for children and elderly wheelchair users, especially when wheelchairs are manually operated on uneven terrain [54,55]. In practice, it is therefore crucial that wheelchair safety skills be intentionally taught to both children with physical disabilities and their caregivers during routine medical checkups or during home visits by allied health personnel.

Participants in this study revealed consistent difficulties in feeding the children with disabilities, arising mostly from the unavailability of essential assistive equipment, notably cutlery and wheelchairs. A review of the literature revealed that such challenges are most acute in poor and remote areas in developing countries, especially in African countries such as Ghana, Malawi and Kenya [45], Namibia [8,9,28], Botswana [19], and South Africa [21]. Many carers lamented the fact that their children lay in bed all the time in the absence of wheelchairs to prop them up to sitting positions conducive to both self- and assisted feeding. Due to economic and financial constraints, caregivers could not afford the special assistive equipment out of pocket. Consequently, some of the children who might have been expected to be independent in their feeding were reported to be lagging in this aspect, making it the responsibility of the carers to feed the children. Similarly, a review of feeding practices of children with disabilities in low-income countries showed that over and above the hardships of poverty, caregivers in these settings also lack education, information and skills for feeding the children [56]. The unavailability of assistive equipment like wheelchairs meant that most caregivers fed the children while lying in bed, oblivious to hazards like choking, aspiration and coughing. Some of the caregivers in this study mentioned that they learned their feeding skills through trial-and-error, meaning that the children concerned are at risk of aspiration or choking before their carers acquire this skill. Best feeding practices for such children include mashing the food and correct feeding posture that aligns the head, neck and trunk for effective swallowing [56]. Overall, the combination of different factors often leads to prolonged feeding, stressful and unenjoyable mealtimes for both the children with physical infirmities and their caregivers. Subsequently, these children are at elevated risk of impaired development (especially those with congenital growth defects like cerebral palsy) and poor quality of life [56,57]. This study, therefore, successfully expands the discourse on assistive technology in poor African settings beyond mobility devices to include specialised cutlery that has hitherto received low priority status despite its high utility in promoting optimal nutritional care.

In the absence of assistive mobility devices like wheelchairs, walking frames and callipers, caregivers in this study reported doing more physical work as part of their caring responsibilities for the children with physical disabilities. This work was mostly regarding carrying, transferring and transporting the children in and around the house. This is in line with similar findings by Currie and Szabo [41] and Geere et al. [58], who noted constrained mobility for both children with abilities and their caregivers that could potentially pose health risks for caregivers. In their study, Barratt et al. [59] found that high caregiver burden was characterised by prolonged periods of providing care, emotional burnout, compromised caregiver physical health, poor mental health, and fractured family dynamics due to caring conflicts and financial challenges, all of which cumulatively reduced the caregivers’ overall quality of life. In this research, caregivers complained that the children became heavier as they grew up and, therefore, became more difficult to carry. In their study, Geere et al. found that caregivers experience spinal and shoulder pain as well as dislocated arms, potentially from carrying the children on their backs [58]. This task became more difficult because the caregivers had to hold on to the children more tightly than expected to avoid falling. After all, the children lacked flexibility and the capacity to hold onto their caregivers in turn. Caregivers in this study are therefore in a difficult and complex position where they must risk their physical health while exercising their caring responsibilities. There are further possible downstream risks whereby the caregivers suffer significant back or spinal injury that will diminish their capacity to care for the children. If that were to happen, the caregivers themselves would need to be cared for at further socio-economic cost to the household.

The participants noted that children with physical disabilities and mobility restrictions needed to be carried to perform daily activities such as toileting, bathing, dressing, eating, sleeping, and participating in play. Many of the caregivers bemoaned how these tasks became progressively more difficult as the children became older and heavier. Similar to findings by Abeasi et al. [5] and Torres and Ohajunwa [20], most of the caregivers in this study reported restricted mobility for both child carers on account of the children’s disabilities. In their study, Geere et al. reported on the social and geographic isolation of both children and caregivers as they sometimes faced insurmountable barriers to attend school, work, places of worship, play facilities, and marketplaces [58]. For the caregivers, this meant reduced opportunities to work and thus exposed the household to deeper economic and financial throes. Some of the children lamented how the world passed them by due to being stuck inside the house or yard [58]. Equalisation of socio-economic opportunities remained a pipe dream for both children and their families, who could not participate in or compete for such prospects on an equal footing. As a result, some of the children failed to achieve functional independence in activities of daily living like bathing, toileting, making their own food, household chores and errands. In the presence of appropriate devices, these children would more likely develop and achieve functional independence in daily living tasks. This will also potentially boost their self-esteem and confidence.

The findings further note that bathing of the children with physical disabilities was one of the key duties that the primary caregivers played in the care continuum. Participants indicated that their primary concern and responsibility as caregivers was ensuring the good hygiene of children with disabilities, which is essential for good health. The participants stated that it was important for them to bathe the children on their own, as this helped in guaranteeing that the children were clean. However, some of the children refused to be bathed by anyone other than the primary caregiver, adding to the caregivers’ role strain [19]. Some of the caregivers stated that they faced several challenges when bathing the children because of the children’s increasing weight, coupled with the caregivers’ own frail health. Caregivers also noted that the bathrooms were not tailor-made to accommodate the children’s disabilities and were therefore not conducive to the task. The absence of proper toilet seats also meant that toileting and bathroom time caused stressful times for both caregivers and children alike. In this study, caregivers also reported that it became increasingly awkward and perceptively inappropriate to bathe the children as they grew older. In line with this finding, Özsavran et al. explain that, to ease the responsibility of bathing the children, special consideration must be made in designing the bathrooms to allow them to be user-friendly for children and people with disabilities, thus aiding the development of their functional independence [22]. However, this may be difficult to achieve in practice as the families are already struggling financially, especially considering the absence of, or poor, welfare assistance.

The study findings indicated that children with physical disabilities need special medical care and, therefore, constantly visit clinics and hospitals. Whereas some caregivers had to take the children for regular medical check-ups, some only took the children to health facilities when the children became sick, highlighting the need to promote preventive health-seeking practices among this vulnerable population segment. Some of the participants reported that accessing the health centres was straightforward because they lived within walking distance. However, other participants had to endure uncomfortable long distances at high logistical and financial costs. This finding is supported by Hashemi et al. [45], Barratt et al. [59], and Adugna et al. [60], who state that exorbitant transport costs due to long distances inhibited timely access to health services for children with disabilities. This is because most of the relevant services, like physiotherapy and occupational therapy, tend to be in faraway urban areas. The caregivers in the same studies expressed dissatisfaction over using public transport, which was not conducive to the physical comfort and accessibility of children with physical disabilities. Operators of the public transport vehicles, mostly crowded buses, displayed insensitivity to the needs of the children and would not readily adjust to accommodate them. For instance, the operators would demand more money to make an extra space available for the children who would not otherwise be comfortable in the one seat. Such demands for extra fares further drained the caregivers’ meagre financial resources and thereby contributed to catastrophic health expenditure [45,60]. Other studies showed that children with disabilities failed to attend medical services because of stigma, paternalistic attitudes of caregivers and health personnel and lack of information by caregivers [4,41]. These factors were not examined in the current study, as the caregivers appeared to be well-informed and highly motivated to access health services, despite the high socioeconomic costs incurred. This speaks to the resilience and determination of such caregivers to provide the best possible care for their children in the face of adversity.

4.1. Significance of the Study

The findings of this study provide important insights into the experiences of caregivers caring for children with disabilities in a typical remote setting in Namibia. These insights are valuable for policy development and implementation targeting children with physical disabilities and their caregivers in resource-constrained settings. It is apparent from the current study that assistive mobility equipment is central to the caring difficulties reported by the caregivers. Providing such equipment will potentially improve the quality of life and well-being of children with physical disabilities and their caregivers alike in rural and remote settings of Africa.

4.2. Limitations of the Study

Despite the significance of the finding, the nature of the sampling protocol being small, purposive, and mainly homogeneous limits generalizability to broader individuals with disabilities. Therefore, interpretation and generalisation of the findings need to account for the specific context in the Hardap region of Namibia. Influence from the researchers’ assumptions, beliefs, or professional education could have been sources of bias in the study. The study did not get the perspectives of the children concerned; hence, their insights have not been included, potentially contributing to a paternalistic discourse regarding the needs of children with physical disabilities. Another consideration is the limited number of non-mother caregivers sampled in the study, which could have resulted in gender being a confounder. Another limitation worth noting is that data were not collected regarding the severity of the child’s disability because the researchers had no capacity to use standardised tools for this process. This omission serves as a limitation because disability severity may be an important factor influencing caregiving burden and intensity of care. There is also potential for selection bias during recruitment since the participants were selected using purposive sampling, which is a non-probability sampling technique instead of using probability sampling techniques such as random sampling.

5. Conclusions

Caring for children, especially those with physical disabilities, is hard and presents significant challenges to caregivers. The best efforts of caregivers in this study to provide optimum care for children with physical disabilities seemed to be hampered by extraneous factors that significantly stretched the carers’ capacity to cope. Poverty had a substantial impact on the quality of care provided to the children. Due to poverty, most families could not afford assistive devices that could otherwise boost the children’s functional independence in activities of daily living, including eating, bathing, walking and toileting. In particular, wheelchairs were reported to be in short supply, and this substantially hindered both the children’s and caregivers’ mobility and restricted their access to important socio-economic activities and events. Providing psychosocial and economic support to caregivers while supplying assistive equipment for the children will ease the caregivers’ caring roles while promoting socio-economic opportunities for both children with physical disabilities and their caregivers.

Recommendations

The Namibian government needs to develop policies that prioritise children with disabilities’ access to assistive mobility devices to promote opportunities for these children, while enhancing their quality of life and functional independence in activities of daily living. Some caregivers mentioned that their children had outgrown their wheelchairs and could therefore no longer use them. Innovative programmes like wheelchair exchange schemes may be a practical, low-cost solution that will improve access to assistive devices. Under such a programme, the government could coordinate the return and redistribution of old wheelchairs after minimal repairs and refurbishment. These programmes also need to be accompanied by comprehensive wheelchair safety education to avoid some of the accidents reported in this study.