Title: Caring for Children with Cerebral Palsy: A Challenge to Caregivers in Rural Areas of South Africa (original) (raw)
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Child Care in Practice, 2017
Family members of children with disabilities have become more involved in their children's care and have adopted the role of primary caregiver. Due to the varying degrees of the condition, children with cerebral palsy (CP) often require greater involvement from their caregivers. Fifteen caregivers for children with CP residing in rural communities of the Western Cape, South Africa, were interviewed to explore the barriers and facilitators that they encountered. Thematic analysis revealed that some progress has been made in terms of service provision to caregivers from previously disadvantaged communities. However, a lot more needs to be done to help caregivers with children with CP. Social support, increased public awareness of the causes of disability, financial support by the government and access to disability friendly services, such as respite care, special education and transport-related services, have been identified as essential. It is important to take this into consideration when designing future interventions in order to provide caregivers with support and services necessary to make an impact.
2020
Background: Research indicates that primary caregivers of children with disability encounter varying amounts of stress performing daily routines. Cerebral palsy is a lifelong functional disability common among children in developing countries. Nonetheless, there is very little literature about cerebral palsy in Ghana. The purpose of this study was to unearth the perceptions and experiences of cerebral palsy among caregivers of children with Cerebral Palsy in a low resource setting. Method: Using a descriptive qualitative approach, 15 caregivers were purposively selected in the Accra Metropolis and interviewed face to face. Collaizi's seven step method was used to perform content analysis and four themes emerged. Results: Study ndings revealed that caregivers had different perceptions regarding the causes of cerebral palsy with most of them linked to spiritual reasons. Caregivers faced physical, emotional, nancial, marital and social challenges. The study also found that the external network available to the caregivers were mainly NGO's with limited governmental support. Conclusion: Caregivers face an arduous task which has implications for their physical and emotional wellbeing as well as their nances. Multiple stakeholder engagement and dialogue is vital to create interventions and policies that can educate, empower and support caregivers to execute their duties and improve outcomes for children with cerebral palsy.
Child: Care, Health and Development, 2019
Aim: This study aims to explore the experiences of carers of children with cerebral palsy living in rural areas of Ghana who have received no rehabilitation services. Background: Cerebral palsy is the most common chronic disability from childhood, which needs lifelong rehabilitation. Most of the population living in rural communities in Ghana have virtually no form of rehabilitation services for their chronic disabling conditions. Caring for children with disability are known to be challenging especially when coupled with environmental challenges in rural communities. Results: Purposive and snowball techniques were used to recruit 12 carers, age 22 to 68 years, of children with cerebral palsy aged 7 to 15 years. Two main themes, developing personal beliefs to support the caregiving role and the demands that shape the experience of caring, emerged from six subthemes and 25 theme clusters of the narratives of the carers. The essential structure of the phenomenon demonstrated the complex interaction of personal and environmental factors in harmony with the actual demands to influence the experiences of participants positively or negatively. Positively, carers achieved coping, committed to caring, hoped for the future, and accepted the condition. However, negatively, carers described the triggering factors of feeling of despair and sorrow as frustration and lack of understanding of the condition, felt stigmatized, and perceived the child was going through pain and suffering. Conclusions: Carers derived strength from their religious and spiritual beliefs to balance the demands of caregiving. Findings could be used as basis for developing interventions to support carers and inform new strategies for rehabilitation service and sensitization of community members about inclusion of children with disabilities.
Challenges of care givers of children with cerebral palsy in a developing country
International Journal of Contemporary Pediatrics
Background: The role of caregiving takes on an entirely different significance when a child experiences functional limitations and possible long-term dependence. The main challenges for parents of children with disabilities are their ability to cope with their children's chronic health problems and effectively carry on with daily requirements of everyday living. The aim of this study is to evaluate the challenges parents encounter in caring for children with cerebral palsy in a developing country.Methods: Consenting parents of children with cerebral palsy presenting in the neurology clinic of the University of Calabar Teaching Hospital, Calabar, south-south Nigeria were recruited for the study. The bio data of the parents were obtained. The challenges encountered by parents of children with cerebral palsy were determined using a semi structured questionnaire.Results: Seventy parents of children with cerebral palsy were recruited into the study. Majority of the subjects (61.4%) a...
Health Sa Gesondheid, 2023
Background: Cerebral palsy (CP) is the most prevalent neurological illness in children, and it can cause permanent sensory, motor and cognitive problems for the rest of one's life. Raising a child with special needs necessitates extensive resources. Women in the middle and lower income brackets are more likely to care for children with CP. Aim: To explore and describe the psychosocial experiences of mothers of children with CP in eThekwini. Setting: This study was conducted at KwaZulu-Natal Children's Hospital and rehabilitation centre. Methods: The research methods were exploratory and descriptive in nature, with a qualitative approach. Purposive convenience sampling was used to select 12 participants who were parents of children with CP under the age of 18. For data collection, semistructured interviews were utilised. The purpose of thematic analysis is to uncover, analyse and summarise themes and patterns within a data set. Semistructured interviews were used to collect data. Results: The psychosocial experiences of mothers of children with CP revealed three key themes. Themes included the burden of care, a lack of social support and the impact of children with CP on mothers. Conclusion: Participants whose children with CP experienced physical, emotional, psychological and social issues, including inaccessible services and buildings and social isolation from family, friends and the community. Contribution: This study helps to strengthen the development and review of policies on care, support interventions and mother empowerment for children with CP.
Experiences of caregivers caring for children with cerebral palsy in Mahalapye Botswana
2017
I hereby declare that: "Experiences of caregivers caring for children with cerebral palsy in Mahalapye, Botswana" is my own work, that all the sources used or quoted have been indicated and acknowledged by means of complete references, and that this dissertation was not previously submitted by me for a degree or any other qualification at another University.
Challenges experienced by mothers caring for children with cerebral palsy in Zambia
South African Journal of Physiotherapy, 2015
Background: Mothers caring for children with disability experience a number of challenges.Aim: The aim of the study was to explore the challenges that mothers who cared for children with cerebral palsy (CP) living in Zambia experienced.Methods: During a qualitative study the experiences of 16 conveniently sampled mothers of children with CP, from the Ndola district in Zambia, were explored by means of interviews. The responses were thematically analysed. All the necessary ethical considerations were upheld.Results: Mothers experienced social isolation and marital problems, as well as negative attitudes from family, friends, community members and health care professionals. The physical environment created access challenges because of a lack of sidewalks, ramps, functioning lifts and small indoor spaces.Conclusion: Mothers of children with CP feel socially isolated owing to a lack of support from family, community members, and health care providers. This social isolation was exacerbat...
2020
Background: Many children with cerebral palsy present with disturbances in sensory, cognitive and motor development which subsequently affect the child’s speech, language and communication development. Caregivers taking care of such children are heavily burdened andif not addressed such cumulative burden may in turn have influence on the quality of care for children with cerebral palsy.weset out to explore the experiences of caregivers ofchildren with cerebral palsy who present with speech impairments and to identify which strategies they use to communicate with their children. Methods: A qualitative phenomenological study was used. Data was collected using in-depth interviews from a purposively selected sample of 8 caregivers of children with cerebral palsy presenting with speech impairment at the University Teaching Hospitalin Lusaka, Zambia. Results:Three themes emerged from the data on caregivers’ experiences caring for a child with speech impairments and one theme from data on ...
Children and adolescents with cerebral palsy in the perspective of familial caregivers
Revista CEFAC
Objective: to analyze family caregivers’ perceptions on care delivered to children and adolescents presented with cerebral palsy. Methods: a quantitative, qualitative study developed with 50 family caregivers of children and adolescents diagnosed with cerebral palsy. Data collection was carried out by means of an interview with semi-open questions whose answers were analyzed based on the Content Analysis. Results: family members’ accounts on care delivered to children and adolescents with cerebral palsy are mostly connected with positive feelings, such as love, happiness, privilege and overcoming. However, for a significant share of these family members, their own quality of life depends on the cared subject’s health condition, blurring the distinction between their own needs and those of the cared subjects. Conclusions: health professionals need to recognize the importance of caregivers’ health promotion as a major condition to keep caring. In this dimension, they may contribute by...
African Journal of Disability
Background: Caregivers of children with disabilities are vital stakeholders when it comes to safeguarding the health, well-being and overall survival of the children that they care for. Caregivers, however, face many challenging conditions that make it difficult for them to optimally fulfil their caregiving role. Understanding these challenges is crucial for developing empowerment programmes for caregivers, which will ensure that children with disabilities receive comprehensive, optimal care and that caregivers experience a good quality of life.Objectives: The aim of this study was to explore and describe the experiences of caregivers providing care to children with disabilities at non-governmental organisations (NGOs) in townships of Tshwane, South Africa.Method: This study followed an exploratory, descriptive and contextual research design within a qualitative methodology. The population in this study included caregivers who care for children with disabilities at NGOs (n = 10). Pa...