Wendline Munemo: Social Worker, Zimbabwe. Email: wendlinemunemo@gmail.com
Kudzai Mwapaura (MSc): Lecturer and Social Work Practitioner, Harare, Zimbabwe. Email: kudzaimwapaura@gmail.com
How to cite using ASWNet style
Munemo W. & Mwapaura K. (2023) ‘A burdensome journey’: The plight of mothers of children with disabilities in Torwood Community, Kwekwe, Zimbabwe. Journal of Social Issues in Non-Communicable Conditions & Disability, 2(2), 178-194.
| Abstract |
| This article explores on the plight of mothers of children with disabilities in Torwood community, Kwekwe Zimbabwe. Missing in literature is the perspective that the plight of mothers of children with disabilities has not been taken into account yet they face numerous obstacles that prove to have a great impact on their well-being and smooth caregiving. To gain a deeper appreciation of the plight of mothers, an African research methodology was utilised punctuated by Ubuntu research approach (URA) whereby data were gathered using dialogue approach and dare or indaba method among twelve mothers who were humanely selected from a local support group in Torwood community. In-situ primary analysis was used as analysis was done as data was collected. An Ubuntu approach was utilised as a theoretical underpinning to analyse the plight of mothers. The research findings show that mothers of children with disabilities encounter numerous obstacles which include psycho-social, financial, transportation, physical and psychological. Utilising the Ubuntu perspective, the obstacles facing mothers of children with disabilities reveal that there is lack of caring, humanness, inclusion, justice, sympathy, compassion towards mothers of children with disabilities. The study concludes that mothers of children with disabilities are having difficult experiences in as far as caregiving is concerned. It is recommended that there is need to review the disability policy, make an informed budgetary allocation for caregivers, more research initiatives on the plight of caregivers, embarking on anti- stigma programs. Key terms: Burden, Caregiver, Child, Disability, Mother, Plight, Ubuntu, Torwood, Zimbabwe Key points The article uses the African research methodology to study the plight of mothers of children with disabilities in Torwood community, Kwekwe, Zimbabwe.The article establishes that mothers and children with disabilities in this community are some of the most vulnerable persons in the country and in the African continent.The research respectfully recommends key stakeholders including social workers and the Government of Zimbabwe to assist mothers to enhance their capacity to look after children with disabilities.Using the Ubuntu theory, the researchers are of the view that there is need for a world where mothers of children with disabilities live with support, dignity and security. |
Introduction
Caring for a child with a disability is not an easy task as it brings with it many obstacles than benefits. Mothers play a significant role in taking care of children with disabilities. However, in Torwood community, mothers of children with disabilities have been facing numerous obstacles in their caregiving role and these obstacles have proved to have adverse effects on their caregiving task as well as their wellbeing. Taking care of a child with a disability is so overwhelming but these mothers receive limited support which tends to compromise smooth caregiving. In the article, the authors examine the plight of mothers of children with disabilities in Torwood community, Kwekwe Zimbabwe. A background will be provided first, followed by review of literature, methodology, results and discussion. Implications to social work practice and the recommendations will be provided also. The study also provides relevant information for policy, social work research, and serves as a guide in developing intervention programs for parents of children with disabilities in Zimbabwe as well as genuinely inculcating the values of Ubuntu framework to improve the well-being of mothers.
Background
The care of children with disabilities depends heavily on mothers of those children. However, most of them encounter several obstacles which have an adverse effect on their social well-being and their capacity to provide care. Research has indicated that caregivers for people with disabilities do not receive adequate help from social welfare systems (Mutale, 2020; van der Mark, 2019; Kontrimiene et al., 2021). Disability-related caregiving involves navigating various areas of care with little or no assistance from social workers. The social work profession has a responsibility to provide necessary services, support and resources to vulnerable populations, like people with disabilities (and their caregivers), however this obligation is frequently undermined (Mutale, 2020). Several children with disabilities in developing nations are provided care with caregivers found in impoverished places with limited access to training and skill developments to provide them with the best care possible (Bizzego et al., 2020). Madi et al., (2019) research showed that stigmatizing mothers of children with disabilities inevitably led to social exclusion and isolation from society as well as within families. Due to the considerable time required to raise a child with a disability, the mothers often incur the danger of social isolation. In Zimbabwe, the current economic situation with its ever-increasing underdevelopment has made it difficult for many mothers to offer specialized care to their children with disabilities. Mothers’ needs have not been considered despite the evidence to suggest that they are experiencing a numerous problem in their care-giving role. The majority of mothers of children with disabilities go through multiple emotional stages due to their role in providing care yet most interventions do not cater for their well-being.
According to Maphosa and Chiwanza (2021), mothers who provide care for children with disabilities are overburdened due to the demands presented in the task while simultaneously receiving little support, which negatively affects the caregiving experience. Despite the central role they play in the lives of their children with disabilities, research which seeks to interrogate on the plight of mothers is limited. The social work interventions on disability gave much attention to the child not the mother as a primary caregiver.
Torwood is a high-density area characterized by low-income families. Torwood community largely depended on Zisco Steel for socio-economic and health survival. When Zisco Steel died Torwood community ran out of breath or life. Torwood, a residential area mostly occupied by former Zisco Steel workers is now a representation of a vanishing community. The mothers of children with disabilities in Torwood have been negatively affected by the existing situation in Torwood following the closure of Zisco steel. They have been failing to cope up with the existing situation. It is from such a background that this study seeks to examine on the plight of mothers of children with disabilities in Torwood, Redcliff, Zimbabwe.
Theoretical framework
Ubuntu perspective
The Ubuntu perspective served as the theoretical framework for this study. It is an African concept that refers to humanness between people within a community (Nyaumwe and Mkabela, 2007). The approach places a huge emphasis on becoming a human being through others. Thus, Ubuntu relates to bonding with others. It is expressed in the isiZulu phrase, ‘ubuntu ngumuntu ngabantu’. The Code of Ethics of social workers in Zimbabwe also states that Ubuntu or Unhu in Shona language places emphasis on values of human solidarity, empathy, human dignity, holding that a person is a person through others (CSW,2012).
Mugumbate and Nyanguru (2013) stipulates that Ubuntu is far less individualistic and the care for and generosity to others are far more central. According to the South African White paper for social welfare of 1997 Ubuntu is a principle of caring for each other’s well-being and fostering the spirit of mutual support. In as much as Ubuntu perspective emphasizes on how people are people through other people, this article therefore utilizes Ubuntu approach in examining how society’s response and reaction to mothers of children with disabilities is linked to their plight. The main research objective guiding the study was to explore the plight of mothers of children with disabilities in Torwood community, Kwekwe, Zimbabwe. The research also sought to investigate how different players including development workers could work with this group to improve their wellbeing and inclusion.
Literature review
Negative experiences of mothers of children with disabilities
Tekola et al., (2020) carried out in Ethiopia, where stigmatization of parents of children with developmental disabilities occurs alongside that of their children. Parents frequently experience feelings of exclusion from the community, from family isolation to neglect from the family and the wider community (Mokhtari and Abootorabi, 2019; Nketsia et al., 2019). Mothers in South Africa claimed in Van der Mark et al.,’s (2019) study that their children with disabilities had received reprimands and callouts from extended relatives and neighbours, causing the mothers’ discomfort and mental distress. In a study conducted in South Africa (SSA, 2019), fathers of the children with disabilities were not involved in the upbringing of their children. Kyeremateng et al., (2019) supported this by arguing that parents of children with disabilities were neglected by the family members. The findings also concur with a study done by Mwapaura (2019) when his participants reported to have lost relationships due to physical disabilities. Hashe (2020)’s study highlighted lack of support from husbands as mothers believed that if they expressed their emotions to their spouses or husbands, they were misunderstood.
According to Tigere and Makhubele (2019), parents of children with disabilities are fighting their own battles in raising their children because there are no support networks available to them. Hepperlen et al., (2021) study on caring for a child with a disability in low-income Lusaka, Zambia discovered that parents were finding it difficult to care for their children with special needs due to financial limitations. According to Lamptey (2019), parents of children with special needs experience stress due to a lack of financial assistance to meet their fundamental demands. This was made worse by the fact that some parents were compelled to quit their employment in order to provide full-time care for their children, which put them in a difficult financial situation. Financial frustrations were considered a burden to the participants as found in the study of Khan et al., (2020) where financial resources for parents of children with impairments were scarce.
It is also crucial to note that in the African context caregiving can be regarded as a collective effort by both the immediate and extended family members. According to Mugumbate and Chereni (2019), Ubuntu is a set of standards and norms for how people, families, and communities should engage with one another. Van der Mark et al., (2019) found that in South Africa, mothers of children with disabilities reported finding it challenging to use public transportation to travel to medical facilities. The mothers stated that they would not be able to transport themselves along with their children who were using wheelchairs since local minibuses frequently refuse to let wheelchairs on board (van der Mark et al, 2019).
Chirwa’s (2017) study on the perspectives of mothers of children with disabilities in Zambia, found out that mothers were left to do caregiving duties alone in the lack of assistance from their partners. Manjengwa et al., (2016) also noted shortage of clean water in high density suburbs. He argued that most caregivers of children with disabilities are mothers who reside in high density urban areas which are characterized by lack of access to sanitary sewers and clean water, extreme poverty, and high prostitution rates. Parents who care for children with disabilities may experience physical and emotional health problems (Ang et al., 2019). Antwi (2023) study in Ghana discovered that parents of children with disabilities encountered significant barriers related to accessing health care, education and other essential services for their children.
Literature included in the literature review
Table 1: Articles included in the review.
| Title | Authors | Year published | Brief summary |
| Caregiver experience and the perceived role of social workers in caring for people with disabilities in South Africa | Maphosa, Ntandoyenkosi and Chiwanza, Vonia | 2021 | The study was conducted with ten caregivers from a special day care centre in the Eastern Cape, South Africa. The findings revealed the role of caregiving as burdensome and the perceived role of social workers as crucial in relieving the burden of care. |
| The socio-economic challenges faced by parents of children with Autism Spectrum in Zimbabwe | Overson Musopero | 2018 | The study investigated the socio-economic challenges faced by parents of children with Autism Spectrum in Zimbabwe. The parents faced stigma and discrimination, communication problems, high financial costs and lack of resources, challenges to access social services, marital problems |
| Using African Ubuntu theory in social work with children in Zimbabwe | Mugumbate, J and Chereni, A. | 2019 | The researchers found that Ubuntu is a collection of knowledge, values and practices that black people view as making people more human. Ubuntu stands for human social work that addresses the needs of vulnerable people. |
| Exploring African Philosophy: the value of Ubuntu in social work | Mugumbate and Nyanguru | 2013 | The study found that the Council of social workers Zimbabwe has Ubuntu in its code of ethics. Ubuntu values are applicable in social work profession. Ubuntu in social work is far less individualistic and the care for and generosity to others are far more central. |
| Service provider’s perceptions of families caring for children with disabilities in resource poor settings in South Africa | Khan, Isaacs, Makoae, Mokhele and Mokkomane | 2020 | The study revealed that, providing services to the caregivers was crucial to ease the burden of caregiving |
| Qualitative research of informal caregivers’ personal experiences caring for older adults with dementia in Luthiania | Kotrimiene, Susariene, Blazeviciene, Raila and Jaruseviciene | 2021 | This was qualitative research of informal caregiver’s experiences in caring for older adults with dementia. |
| The unplanned journey: Challenges of parents of children living with disabilities in Ghana | Anwi, T | 2023 | The study looked at the challenges faced by parents in raising a child with a disability which involved loneliness, physical exhaustion, problems with money. The study went on to look at the coping mechanisms employed by the parents to cope with the challenges they were facing |
Methodology
The African research methodology (ARM) punctuated by the Ubuntu research approach (URA) was adopted in this study. ARM values African ways of collecting and analysing data (Khupe and Keane, 2017). URA entails applying ubuntu principles when researching including using Ubuntu philosophy, knowledge, theories, ethics and techniques (Mugumbate, 2020). This article aimed at exploring the plight of mothers of children with disabilities in Torwood community, Kwekwe Zimbabwe. Data were gathered using dialogue approach and dare or indaba method among twelve mothers who were humanely selected from a local support group in Torwood community to obtain an in-depth understanding of mother’s plight. Driven by the Ubuntu philosophy the researcher also utilized local languages in seeking consent, collecting data and communicating findings, using language that mothers understood. Thus, the local language approach (LLA) was utilized in all stages of the research process.
The participants voluntarily participated in the study and the researchers promised not to disclose their identity hence pseudonyms were used through -out the study. Ubuntu-driven research values humane approaches and discourages cheating, deceit, harm, disrespect and injustice (Mugumbate, 2020). The researchers therefore conducted the research in line with the ethical requirements of the total agreement technique (TTAT) whereby the researchers were granted permission to conduct the study by the Ministry of Public Service Labor and Social Welfare and the Redcliff Town Council. The Munyai approach in the Ubuntu philosophy was also utilized when the researcher made use of an intermediary who was the chairperson of Tsungai mother support group to approach mothers of children with disabilities. Twelve (12) mothers of children with disabilities from Tsungai support group were selected. Having a support group in place was ideal to the researchers because the participants were easily accessible. The inclusion criteria for study participants consisted of those mothers who were part of the Tsungai mother support group and mothers of children with disabilities who were not part of the support group were excluded.
The study also made selected key informants or experts due to their desirable characteristics. These key informants were a Social Development officer in the Department of Social Development, A Kwekwe based leader of the Zimbabwe Parents of the Handicapped Children Association, a social worker and Chairperson of Tsungai support group.
In-situ primary analysis was used as analysis was done as data was collected and the main themes that emerged include, stigma and discrimination, lack of informal support systems, lack of resources, transportation among others. After the research was finished, debriefing and aftercare were taken into consideration. This concurs with Ubuntu philosophy which emphasize on the importance of communicating the findings to the participants. Ugwu et al., (2020) define debriefing as a conversational session focused on exchanging and analysing information after a specific incident has occurred.
Findings
Stigma and discrimination
The participants highlighted that some members of the community were stigmatising and discriminating them with their children. All participants from focus group discussion agreed that occasionally, some community residents would insult and belittle them, and this affected them emotionally.
One of the participants had this to say:
I am being stigmatised together with my child. I was selling roasted dried maize with my child and mother came and bought one pack and go. The mother then went where some mothers of the community were gathered. I do not know what they discussed but she came back and returned the roasted dried maize saying I no longer need them so bring my money back. When I checked the packet there was nothing wrong with them. I then checked my baby and I saw a lot of pus around his wound. I then realised that the mother returned the packet because she saw the pus. So, I am having hard times.
A key informant also concurred with the above she said that:
Mothers are experiencing problems with their rental housing. Because they have a child with a disability, they are occasionally evicted. You’re aware that most people do not understand. The stigma exists. (K1)
The above given sentiments from participants point to the stigmatization and discrimination of mothers and their children with disabilities in Torwood community and this was an obstacle that compromised on smooth caregiving. The aforementioned is consistent with a study by Tekola et al., (2020) carried out in Ethiopia, where stigmatization of parents of children with developmental disabilities occurs alongside that of their children. In as much as the Ubuntu perspective acknowledges that a person is a person through others as expressed in isiZulu phrase ‘ubuntu ngumuntu ngabantu’ this was not in line with what mothers and their children with disabilities experienced within Torwood community. The stigma and discrimination they experienced was opposed to the Ubuntu values of human solidarity, empathy and human dignity. Again section 56(3) of the Constitution of Zimbabwe Amendment No 20 of 2013 states that every person has the right not to be treated in an unfairly discriminatory manner and this entails that mothers and their children in this study had to be treated fairly within Torwood Community. This is also in line with the National Disability Policy of June 2021 section 3.3 (6) which states that families and caregivers of persons with disabilities must not be discriminated against on the basis of disability of their family members. However, in the current study the plight of mothers as primary caregivers was shown in them being stigmatised and discriminated in Torwood community despite the presence of the above legal instruments.
Lack of informal support system
Most of the participants lacked support from their husbands and extended family members. Some participants highlighted that members from the extended family despised them for giving birth to children with disabilities. One of the participants had this to say:
My husband’s family does not want to interact with me or my child with a disability because they argue that in the whole clan, they have never seen a person who has a child with a disability, therefore they blamed my family for that. I once attended a family funeral and observed that no one wanted to associate with me. (P5)
These results are consistent with a study conducted by Chirwa (2017) on the perspectives of mothers of children with disabilities in Zambia. Mothers in his study were left to do caregiving duties alone without assistance from their partners who were not involved in the upbringing of their children. This study established the reality of the notion that many households with children with disabilities lack a father. The findings also concur with a study done by Mwapaura (2019) when his participants reported to have lost relationships due to physical disabilities. According to Tigere and Makhubele (2019), parents of children with disabilities are fighting their own battles in raising their children because there are no support networks available to them. The Ubuntu philosophy promotes teamwork, collaboration and group support in caregiving. A deep sense of belonging to the extended family, clan or the community is its cornerstone (Mupedziswa et al, 2019). However, in this case mothers of children with disabilities did not receive any support hence a deep sense of belonging to others was never felt.
Lack of resources
The findings revealed that lack of resources was another obstacle that compromised smooth caregiving, refusing mothers to fully execute their caregiving task. Participants identified, lack of basic necessities like food, clean water, clothing, walking devices, decent accommodation and medication for their children. One of the participants had this to say:
The problem is money. Right now, I need money for diapers, I need bandages and medicine always so that I frequently clean the child ‘s wound in his head because it is constantly releasing pus. So, if you go to the clinic, they will say they do not have medicine and bandages. So, I am supposed to buy expensive medicine in the pharmacy, yet I am financially constrained. Also, the child needs specialised food. Also, in Torwood there are water shortages and bucket costs 400rtgs. Again, we are tenants who are supposed to pay rent. It’s hard for me. (P1)
One of the key informants also mentioned lack of medication. She had this to say:
These mothers do not have access to medications. Knowing that certain epileptic children require pricey medications, and that private hospital are excessively expensive, so these mothers have a big challenge. There is AMTO at Social Welfare. Even if the mother is given the opportunity to get her child treated freely, the doctor prescribes drugs which need to be purchased from the pharmacy, yet the mother is financially constrained. Additionally, the mothers are unable to pay for medical tests like CT scans. (K2)
From the above sentiments, one can note that the caregiving experience of participants seemed to be ‘burdensome’ for them. The burden of the caregiving experience can be linked to the lack of support that participants received hence the provision of basic needs to their children was upon their shoulders. The situation of mothers is supported by Hepperlen et al., (2021) study on caring for a child with a disability in low-income Lusaka, Zambia, where it was discovered that parents were finding it difficult to care for their children with special needs due to financial limitations. The failure of mothers to access expensive medication is supported by the World Health Organization (2018), which argues that prohibitive costs is a barrier faced by persons with disabilities in accessing health care. This also concurs with Article 25 on the UN Convention on the Rights of Persons with Disabilities (CRPD) which supports the rights of persons with disabilities to get the highest standard of health without being treated unfairly in accessing health services. Section 3.10.10 of the National Disability Policy of June 2021specifies that mothers who give birth to children with disabilities must be given appropriate support within healthcare and the social welfare system immediately after delivery of the child and thereafter. In line with the Ubuntu perspective, caregiving is a collective effort not the sole responsibility of the caregiver. Mugumbate and Chereni (2019) view Ubuntu as expectations and practices of how individuals, families and communities must interact with one another to render support to those in need and in this case, mothers and their children with disabilities. However, from this article mothers had to bear the burden of caregiving alone without assistance from anyone.
Transportation
The participants also highlighted that expensive transport was a barrier in accessing rehabilitation therapy services for their children. One of the mothers had this to say:
From Torwood to Kwekwe town it costs a dollar because the distance is long. The Zupco buses that are cheaper transport people to and from Torwood but they are not easily accessible anytime you need them. So, you will be left with no option but to pay dollar to go with the child for physiotherapy. Another issue is that commuter omnibus drivers and conductors find it boring to carry a wheelchair. For those willing to carry the wheelchair will ask me to pay for the wheelchair again. At times other drivers will understand me. (P12)
The above sentiments are in line with the social model of disability. This model rejects the notion that hindrances to children with disabilities participating in society are primarily caused by their disabilities and instead places an emphasis on environmental constraints (UNICEF, 2007). This then explains that the people who are able bodied (commuter omnibus drivers and conductors) are making life harder for the children with disabilities and their mothers to access services. Mwapaura (2021:130) argues that ‘Transportation barriers are due to a lack of adequate transportation that interferes with a person’s ability to be independent and to function in society.’ This entails that it is the able-bodied who keeps on disabling the children with disabilities. The findings are also in line with van der Mark et al. (2019) In South Africa, mothers of children with disabilities reported finding it challenging to use public transportation to travel to medical facilities. The mothers stated that they would not be able to transport themselves along with their children who were using wheelchairs since local minibuses frequently refuse to let wheelchairs on board (van der Mark et al, 2019). Concurring with Ubuntu values of caring, humanness, justice, sympathy and compassion it can be concluded that transporters lacked care, sympathy and compassion towards mothers and their children with disabilities. Section 3.15.5 of the National Disability Policy of June 2021 states that, all public transport operators must ensure that persons with disabilities are not made to pay for their assistive devices. However, mothers in this study highlighted missing therapy sessions to avoid transport costs.
Lack of formal support systems
The participants indicated their lack of support from the government and NGOs. They highlighted that the government was not considerate about their plight. Most of them also indicated that they applied for cash transfer, but they have not received any cash from the government. In as much as participants believed that social welfare should assist them, one of the mothers had this to say:
We do not have assistance that is meant for us from Social Welfare, yet we expect the Department to help us to take care of our children with disabilities. I applied for a cash transfer last year and till now I have not received the money. The Department officers keep on telling us that the money will come. I heard of the government ‘s initiative of giving loans to people living with disability, then what about us the primary caregivers of children with disabilities there are no loans for us. I think the government should look into that P9.
One of the key informants echoed on the above sentiments. She had this to say:
At Social welfare services are being offered to the actual person with a disability, so the services for mothers are very limited. Even most NGOs target the children with disabilities not the mother, a primary care giver. (K1)
The above findings reflected that the Department of Social Development was viewed by participants as key in providing them with the support that they need. This is in line with the Zimbabwe ‘s Social Welfare Assistance Act (17:06) which allows for the distribution of social welfare aid to needy individuals and their dependents. According to a South African study (van der Mark et al., 2019), governmental organizations are crucial in creating an atmosphere where mothers of children with disabilities can access professional assistance. Ditlhake and Maphosa (2021) argue that people are capable of overcoming the obstacles they encounter if appropriate resources and support are provided to them.
This then leads to the improvement of caregiving experience which in turn relieves the burden of caregiving. This concurs with Ubuntu philosophy which believes in empowering and supporting individuals and communities. However, the findings reflected the absence of formal support systems. Section 25, of the Zimbabwean Constitution Amendment No 20 of 2013 states that, the state and agencies of government must provide for the care and assistance to mothers, fathers and other family members who have charge of children. This translates to the provision of assistance to mothers of children with disabilities. However, it is regrettable that in Zimbabwe, service provision is primarily made to cater for the requirements of persons with disabilities, while ignoring the needs of their caregivers for example the Disabled Persons Act (Chapter 17:01) makes provision for the welfare and rehabilitation of disabled persons not the caregivers.
The National disability policy of June 2021 is offering services to the actual person with a disability not the caregiver. For example, the disability loan is being given to persons with disabilities. Also, in line with the Disability movement mantra ‘Nothing about us without us” the Ministry of Public Service, Labour and social welfare therefore embraces full and active participation of persons with disabilities and their families. However, in the current study, the findings reveal that mothers as primary caregivers are not fully and actively participating in matters that positively impact on their well-being and ensure smooth caregiving. Given the paucity of formal support systems, mothers of children with disabilities have a challenging job providing for their children. According to Maphosa and Chiwanza (2021), mothers who take care of children with disabilities are overburdened by the demands of the job while simultaneously receiving little support, which negatively affects the caregiving experience.
Physical and psychological state of mothers
The participants reported to have health and physical chronic conditions that also had an impact on the caregiving role. These chronic conditions included High Blood Pressure, Diabetes and persistent headaches. One of the participants said:
I was diagnosed with blood pressure in November last year, so many a times I will be having a headache. Sometimes I end up speaking alone, plus I also forget what I was doing. My mind is not stable. I am stressed up.
The article revealed that stress-related conditions can arise as a result of obstacles encountered during the caregiving process. Some mothers reported that they were failing to accept the disabilities of their children. Again, emotional distress was exacerbated by their lack of support. Ang et al (2019) argues that parents who care for children with disabilities may experience physical and emotional health problems. According to Nketsia et al., (2021) study in Ghana, parents’ experiences when their child was diagnosed with a disability revealed that they struggled to accept the situation and it affected them emotionally and physically. According to Khan et al (2020) the measures to reduce stressors for caregivers involve caregiver support groups to strengthen their coping capacities. They offer a crucial social safety net for caregivers to ease stress and tension. In the current study mothers of children with disabilities belonged to Tsungai support group in Torwood. In line with the Ubuntu Philosophy teamwork, collaboration, group cohesiveness and group support are crucial in positively influencing the caregiving experience.
Discussion
The article discusses on the plight of mothers of children with disabilities. Mothers were overwhelmed by the nature of their daily caring responsibilities and financial difficulties, for which they were frequently unprepared. The study demonstrated the difficulties faced by mothers of children with disabilities which were affecting smooth caregiving, yet they lacked support from different support systems. According to Lamptey (2019), parents of disabled children experience stress due to a lack of financial assistance for fundamental needs. The Ubuntu philosophy expresses that a person is a person through others. ‘Ubuntu ngumuntu ngabantu’ in the zulu phrase. However, the lack of support and assistance for these mothers was against values of the philosophy.
The findings also indicated a lack of financial support from the government. Most participants indicated that the Department of Social Development was supposed to offer them with financial support. However, participants highlighted that the Department was not fully addressing their needs although the National Disability Policy of June 2021 states that children with disabilities and their caregivers must receive support from the state and other government agencies. A study in India found that the amount of welfare money the government supplied for children with disabilities was insufficient, therefore caregivers continued to face financial difficulties (Vadivelan et al., 2020). Participants also highlighted that they were facing high transport costs to access rehabilitation services for their children. Al Imam et al., (2021) stated that utilization of rehabilitation services is impacted by environmental factors like transportation infrastructure and family income where those services are available. This concurs with the social model of disability where environmental impediments in the community that can prevent people with disabilities from fully and effectively participating, are the focus of the model of disability.
Participants described feeling cut off from society as a result of stigma and discrimination. This supports a study by Lamptey (2019) that revealed mothers of disabled children face significant levels of social stigma. As a result of stigma and discrimination in the community participants in the study decided against going to social events and not travelling and this led to them missing important community programs and activities. Furthermore, some participants experienced problems with accommodation since most of the house owners were stigmatising them with their children with disabilities. The stigma and discrimination experienced by mothers did not concur with the Ubuntu values of compassion, sympathy and humanness.
Lack of informal support systems was presented as an obstacle to smooth caregiving. Inadequate support from the family was identified as the most socioeconomic difficulties caregivers in Kenya encountered when taking care of children with disabilities (Bunning et al., 2020). A closer look at the information above reveals that Zimbabweans respect their families as a vital support system, but for the mothers of children with disabilities, the extended family as a significant support system did not exist to them. One of the cornerstones of Ubuntu philosophy is a deep sense of belonging to the extended family, clan or the community (Mupedziswa et al, 2019). However, mothers lacked such belongingness. Participants indicated that they lacked financial and emotional support from their in laws and extended family members. High levels of stress which resulted from the caregiving task led to high blood pressure and sugar diabetes. In a study on factors influencing the health of caregivers of children with developmental disabilities by Marquis et al., (2019), they discovered that the parents of the children were more prone to a variety of physical health issues because of their poor mental well-being, including headaches, insomnia, muscle pains, high blood pressure, arthritis, and stomach ulcers.
Conclusions, implications and recommendations
Conclusions
The study’s objective was to examine the plight of mothers of children with disabilities. Provided with the study findings, the study concludes; that mothers of children with disabilities are overwhelmed by their caring responsibility. The role was found to be burdensome, and this was attributed to the lack of support from the community, family members and the government.
Implications
This study revealed the need for understanding the plight of mothers in caring for children with disabilities as having implications for training and practice of social work. Knowledge gained from the study is significant in informing further training in continuous learning for social work students before they engage into the field of social work as well as social workers who are already in practice. This is attributed to the fact that social workers currently seem to be neglecting their role in offering assistance to mothers of children with disabilities who are considered primary caregivers. The research implications for social work practice call for adequate knowledge and skills in addressing the needs of children with disabilities as well as improving the well-being of mothers of those children.
Recommendations
- The Disability policy in Zimbabwe should be reviewed so that it will also consider the plight of caregivers of children with disabilities.
- Government as a key player in addressing people’s needs should lead initiatives for supporting children with disabilities and their families. This entails that NGOs or civil societies should only be there to complement government efforts not to initiate programs.
- Associations like the Zimbabwe Parents of the Handicapped Children Association and other advocacy groups should be involved in embarking on anti-stigma programs to educate the public on the causes of disability, experiences of family members, and the need to show love and concern for families of children with disabilities.
- After an observation that there is paucity on the studied conducted on caregivers of children with disabilities in Zimbabwe the research therefore recommends that there is a need for research initiatives by social workers that will look into the plight of caregivers in dealing with children with disabilities.
- This study was conducted in an urban area in Kwekwe, Zimbabwe. However, the study recommends that it would also be ideal to conduct a similar study in rural areas of Zimbabwe, where the majority of the population resides and where mothers face a lot of challenges including poor access to health and rehabilitation therapy services.
- There is need for the Redcliff town council to improve on water shortages in Torwood Community
- There is also need for the Redcliff town council to collaborate with the government in availing housing stands and build decent houses for the mothers.
Acknowledgments
The researchers would like to thank all the participants of this study for their willingness to participate. Special mention also goes to the reviewers of this article for their invaluable and constructive support which refined the paper towards making a solid contribution to the social work profession in Africa.
Author contributions
This work was conducted in collaboration with all authors. Wendline Munemo was the primary researcher. All authors approved the final manuscript.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship and/or publication of this article.
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