Psychosocial experiences of mothers caring for children with cerebral palsy in the eThekwini district (original) (raw)
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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...
Children
Background: In South Africa, children with cerebral palsy are nested within a family setting by immediate relatives, particularly in the rural areas. These immediate relatives are regarded as caregivers and are not trained with regard to providing care to children with special needs. Therefore, they have to find ways to adapt to their new roles of caregiving using the available resources. The aim of this paper is to present the challenges encountered by caregivers of children with cerebral palsy in rural areas of South Africa. Methods: This qualitative, explorative, descriptive, and contextual study included 10 caregivers for children with cerebral palsy who were purposively recruited from the three respective hospitals in Vhembe District within Limpopo Province. Data were collected through individual in-depth interviews and analysed using a thematic approach. Ethical considerations and measures to ensure trustworthiness were upheld throughout the study. Results: Four themes emerged...
Challenges experienced by mothers of children with cerebral palsy in Ndola, Zambia
2012
About 10% of children worldwide experience developmental disorders and require access to the health care system. These disorders also require extensive care giving, often throughout childhood and into the adult years. Cerebral palsy (CP) is one such chronic condition, and can serve as a major cause of childhood disability. It is the commonest cause of neurological impairment in childhood and is associated with functional limitations and lifelong disability. Providing the high level of care required by a child with long-term functional limitations can become burdensome and may impact on both the physical and psychological health of the care giver. To prevent problems suffered by mothers of children with CP, it is important to explore the challenges experienced. All studies conducted previously on cerebral palsy in Zambia focus on impairments and difficulties experienced by children with CP and none of the mothers' challenges have been explored. The aim of this study therefore was to explore the challenges that mothers of children with cerebral palsy experience in Ndola, Zambia. The study was conducted at two rehabilitation centers (Twapia and Mushili) under the Community Based Rehabilitation (CBR) catchment area in Ndola. A qualitative research design was employed. The mothers were stratified and purposefully selected and interviews were stopped once theoretical saturation was reached. Permission to conduct the research was obtained from relevant bodies and ethical issues were observed throughout the study. Sixteen (16) mothers of children with CP were interviewed. In-depth interviews were done using an interview guide which was designed after extensive review of literature. The interviews were audio recorded. The recorded data was transcribed verbatim and thematic analysis was used to analyze the data. The results showed that the mothers faced many challenges which included emotional, physical health, socioeconomic , environmental, misdiagnosis of the condition of their children, marital problems and lack of implementation of policies regarding children with CP by the Zambian government
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...
Background: It has been established that the challenges faced by children with cerebral palsy bring about a higher level of stress which has negative effect on their physical health as well as their social well-being. The aim of this study was to explore the psychosocial problems encountered by the parents caring for children with cerebral palsy (CP) in an urban setting. Methods: Qualitative research design using focus group discussion (FGD) was used for the study. The setting was a focus group discussion (FGD) at Obafemi Awolowo University Teaching Hospitals Complex, Ile-Ife, SouthWest , Nigeria. A total of ten parents participated in the focus group discussion. The parents caring for the children with cerebral palsy coming for treatment in the physiotherapy outpatient clinic of the department were contacted and the nature of the study was explained to them. The main outcome measured were the psychosocial problems encountered by the parents caring for children with cerebral palsy. Results: The outcome of the study revealed that problems like finance, health-related problems, impaired social relationships, worries concerning child's future and requirement for more support were encountered by the parents of these children. Most of the parents had visited different traditional, spiritual homes as well as health care facilities for solution to their children's problems. Conclusions. Parents caring for children with cerebral palsy encountered varieties of psychosocial problems. Family centered care program can be designed for cerebral palsy children and their parents based on information that may be obtained from research studies of this nature.
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 ...
Perceptions and treatment of children with cerebral palsy among the Tonga of Binga in Zimbabwe
Cogent Social Sciences
Background: While disability is universal, there is a marked variation in caregivers' experiences of caring for children with disabilities. Therefore the diversity of disability experiences across the world needs to be acknowledged in order to understand care practices relative to disability. Aim: The paper explores the link between disability perceptions and treatment among the Tonga of Binga through their disabled children. Method: A total of 53 participants were enrolled in a longitudinal, qualitative and ethnographic study. Data was collected through in-depth interviews, participant observation and focus group discussions. The primary researcher returned to the field over time to explore changes and the processes associated with these changes from 2005 to 2013. Data analysis: Thematic analysis was conducted to discern recurring patterns within the data. Results: The results showed both positive and negative attitudes and behaviour towards children with disabilities; and the complexities of these influenced by their historical background, life experiences, social, cultural and economic factors. Policy consideration: Local cultural knowledge for policy designing and implementation.