‘There is family tension, but they understand…’: familial and sibling relationships following the diagnosis of cerebral palsy in children in Ghana

Dogbe, Joslin; Kyeremateng, Joana D.A.; Opoku, Maxwell Peprah; Nketsia, William; Hammond, Charles

doi:10.1080/20473869.2019.1573572

Cited by 26 publications

(24 citation statements)

References 50 publications

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“…Participants discussed that they had to cover the cost of medical and transportation expenses which put strain on their finances. This finding corroborates the results of previous studies that found that primary caregivers of children with CP suffered acute financial difficulties that affected their psychological well-being (Dogbe et al 2019; Khayatzadeh et al 2013; Whittingham et al 2011). This finding is unsurprising because there are limited social support systems available to parents and their children with disabilities (Opoku et al 2019).…”

Section: Discussionsupporting

confidence: 92%

“…Unfortunately, in low-income countries empirical evidence on the experiences of primary caregivers remains low (Dan & Paneth 2017). In societies such as Ghana, where current systems of care for children with disabilities are unavailable (e.g., Dogbe et al 2019), primary caregivers are expected to raise their children and be part of the life of their children with CP. If parents are not healthy and received informal support from family members, they may be unable to provide for themselves, their child and the rest of their family with the best possible care.…”

Section: Introductionmentioning

confidence: 99%

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Experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in Ghana

et al. 2019

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Background: Cerebral palsy (CP) is a non-progressive disorder of posture or movement caused by a lesion to the developing brain that results in functional limitations. The diagnosis of CP can vary from one child to another, causing family stress because of vague and unknown outcomes of the disorder. Although there are negative attitudes in Ghanaian societies towards primary caregivers and children with disabilities, fewer attempts have been made to understand their experiences.Objectives: The main aim of this study was to explore the experiences of primary caregivers across the trajectory of the diagnosis (before, during and after) of CP in the setting of a tertiary hospital.Method: Using Social Capital Theory as framework, 40 primary caregivers of children with CP, who were receiving treatment at a major referral hospital in Ghana, were interviewed about their experiences before, during and after diagnosis.Results: The results that emerged from the thematic analysis were discussed as follows: experiences before diagnosis, experiences during the diagnosis and experiences after the diagnosis. Particularly, participants discussed their inability to access essential services such as education for their children with CP.Conclusion: In light of systemic challenges faced by participants and their children with CP, the need for health policymakers to prioritise the public education about CP, promoting the well-being of caregivers and other implications of the study have been discussed.

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Section: Discussionsupporting

confidence: 92%

Section: Introductionmentioning

confidence: 99%

Experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in Ghana

et al. 2019

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“…The majority of participants stated strong aspirations for paid employment, but explained that the insufficient provision of childcare services in Addis Ababa restricted them. Other studies have portrayed the impact of caregiving in restricting family members from engaging in livelihood and social activities (Dogbe et al 2019 ; Paget et al 2016 ).…”

Section: Discussionmentioning

confidence: 99%

Needs of families of children with intellectual and developmental disabilities in Addis Ababa

Aldersey

Ahmed

Tesfamichael

et al. 2020

African Journal of Disability

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Background Family support is an essential component of caring for children with intellectual or developmental disability (IDD), however, specific family support needs in developing countries, such as Ethiopia, have received minimal attention in the literature to date. Objectives This study sought to understand the specific disability-related support needs of families with children with IDD in Addis Ababa, Ethiopia. We answered the following questions: (1) How do family members of children with IDD in the Mekaneyesus Centre in Addis Ababa currently meet their disability-related support needs?; (2) what are these family members’ most pressing unmet disability-related needs? and (3) how do family members perceive their capacity to meet their support needs? Method This study drew from an exploratory qualitative descriptive approach with 16 family members of children with IDD, recruited from a centre for children with IDD. We conducted semi-structured interviews in Amharic. We transcribed and translated interviews into English and guided by a conceptual framework for family support from Kyzar et al. ( 2012 ), we thematically analysed the data. Results Participants identified instrumental and emotional needs to be most prominent, with additional discussion around various physical and informational needs. Participants identified childcare as the most significant unmet need, which resulted in the loss of various important life roles. The participants discussed major sources of support coming from spirituality, family members and community. Stigma emerged as a critical family support theme external to the Kyzar et al. ( 2012 ) classifications of family support. Conclusion Although family members are adapting and responding to meet their needs in the best way they can, additional support, particularly related to childcare and future planning, is essential.

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“…The sense of responsibility among the family members motivates parents to continue providing care and to work to finance the treatments for their children. Parents' support and supportive relationships with siblings can play a positive role in children's development (Dogbe, Kyeremateng, Opoku, Nketsia, & Hammond, 2019). The family's ability to continue the treatments for their children must be supported by the environment, including cooperation, commitment, social support, and financial assistance.…”

Section: Discussionmentioning

confidence: 99%

The Resilience of Families with Cerebral Palsy Children: Implications for Social Protection

Sekar

Adi

Rachmawati

2021

JPM

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There are generally agreed by both professional workers and laymen that the resilience of families is influenced by emotional climate of the family. This study aims to provide an overview of resilience in families with children who have cerebral palsy, who attend YPAC (Foundation for Disabled Children), which is the only centre for cerebral palsy services in Jakarta. Qualitative research was used to analyse a case study featuring three (3) separate families, with each family having two (2) children with cerebral palsy. The result of this study describes the Family Resilience by looking at risk factors and protective factors in families with Cerebral Palsy children and all their limitations. Risk factor is the condition of the informant, who has insufficient and unstable income. On the other hand, family members also receive discrimination regularly, and even experienced physical violence. Meanwhile, protective factor is a source of strength from their personality or values of each member of the family, commitment, and support from the surrounding environments, such as extended family, friendship groups, neighbours, and institutions. Social support becomes a source of strength for the family and keeps their fight with their children with cerebral palsy. Apart from internal factors, their relation to their environment also supports the family’s resilience.

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‘There is family tension, but they understand…’: familial and sibling relationships following the diagnosis of cerebral palsy in children in Ghana

Cited by 26 publications

References 50 publications

Experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in Ghana

Experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in Ghana

Needs of families of children with intellectual and developmental disabilities in Addis Ababa

The Resilience of Families with Cerebral Palsy Children: Implications for Social Protection

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