The experiences of parents raising children with developmental disabilities in Ethiopia

Tekola, Bethlehem; Kinfe, Mersha; Bayouh, Fikirte Girma; Hanlon, Charlotte; Hoekstra, Rosa A.

doi:10.1177/13623613221105085

Cited by 14 publications

(4 citation statements)

References 47 publications

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“…This is likely to put parents to severe economic strain. Studies conducted in Ethiopia [ 62 , 63 ] found that parents of children with neurodevelopmental disorders experience such economic challenges as financial difficulty, lack of education and training, lack of financial support and employment opportunities.…”

Section: Discussionmentioning

confidence: 99%

Challenges and coping mechanisms of parents of children with attention deficit hyperactivity disorder in Addis Ababa, Ethiopia: a qualitative study

Mesfin,

Habtamu

2024

BMC Psychol

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Background Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental disorder that has manifestations of inattention, hyperactivity, and impulsivity. It affects every facet of a child’s life, including one’s own emotions, family and school life, and social interaction. The few available studies on ADHD conducted in Ethiopia focus on teachers’ awareness and the prevalence of ADHD. None of these studies has taken into account parents of children who have ADHD. The present study, therefore, aimed to find out the challenges and coping mechanisms of parents who have children with ADHD. Methods A phenomenological qualitative study was conducted to explore the experiences of parents who have children with ADHD. The study was carried out in Addis Ababa, the capital city of Ethiopia. Fourteen parents and two healthcare providers were involved in the study. Participants were selected using a purposive sampling technique. In-depth interviews were conducted with parents of children with ADHD (n = 8) and healthcare providers (n = 2). One focus group discussion (FGD), consisting of six members, was also conducted with parents. A topic guide for conducting the interviews and FGD was developed. Interviews and the FGD were audio-recorded. The data were transcribed verbatim, translated into English, and then analyzed using a thematic analysis approach. Results With regard to challenges of parents of children with ADHD, three themes emerged: social challenges, economic challenges and psychological challenges. Stigma is found to be the most common challenge. Other challenges included worry about the child’s future, lack of social support, strained relationships with others, impact on their job, and marital conflict. Concerning coping mechanisms, two themes emerged: Inward and outward means of coping. The inward means of coping included prayer and developing an optimistic mindset whereas the outward means were family support, healthcare providers’ guidance, and social avoidance. Conclusions The study found that parents of children with ADHD experience several aspects of psychological, social, and economic challenges. Support from healthcare professionals, family members, and the community at large is found to be useful for parents to cope with these challenges. Future research should focus on evaluating interventions that would help parents with ADHD cope with the challenges they experience.

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Section: Discussionmentioning

confidence: 99%

Challenges and coping mechanisms of parents of children with attention deficit hyperactivity disorder in Addis Ababa, Ethiopia: a qualitative study

Mesfin,

Habtamu

2024

BMC Psychol

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“…The WHO CST was developed using expert consultation and emerging evidence showing that, although there is a need to examine predictors, moderators and mediators of intervention effectiveness through high‐quality studies are needed 118 . Initial research on the WHO CST showed positive findings for child and caregiver outcomes and showed that the program was acceptable, relevant, and feasible 119, 120 . Community scale‐up and additional research on the WHO CST is ongoing and will probably inform future directions in CST interventions.…”

Section: Discussionmentioning

confidence: 99%

“…118 Initial research on the WHO CST showed positive findings for child and caregiver outcomes and showed that the program was acceptable, relevant, and feasible. 119,120 Community scale-up and additional research on the WHO CST is ongoing and will probably inform future directions in CST interventions.…”

Section: Favors Control Favors Treatmentmentioning

confidence: 99%

Caregiver skills training for caregivers of individuals with neurodevelopmental disorders: A systematic review and meta‐analysis

Reichow,

Kogan,

Barbui

et al. 2023

Develop Med Child Neuro

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AimTo systematically review the effectiveness of caregiver and parent skills training programs, including caregiver‐mediated interventions, for caregivers of individuals with neurodevelopmental disorders.MethodWe conducted a systematic review with a random‐effects meta‐analysis. We searched 11 electronic databases through July 2021 and used a snowball methodology to locate relevant articles of randomized controlled trials. Effect size estimates were pooled using Hedges' g from data extracted from study reports and through author requests using random‐effects meta‐analyses for three child outcome categories (child development, adaptive behavior, and problem behavior) and three caregiver outcome categories (parenting skills and knowledge, psychological well‐being, and interpersonal family relations).ResultsWe located 44 910 records, from which 75 randomized controlled trials involving 4746 individuals with neurodevelopmental disorders and their caregivers were included. Random‐effects meta‐analyses showed improvements in child development (g = 0.30; 99% confidence interval [CI] = 0.07–0.53) and reduction in reported problem behaviors (g = 0.41; 99% CI = 0.24–0.59), but not a statistically significant improvement in adaptive behavior (g = 0.28; 99% CI = −0.42 to 0.98). Caregivers showed improvements in parenting skills and knowledge (g = 0.72; 99% CI = 0.53–0.90), psychological well‐being (g = 0.52; 99% CI = 0.34–0.71), and interpersonal family relations (g = 0.76; 99% CI = 0.32–1.20).InterpretationCaregiver skills training programs benefit both caregivers and children with neurodevelopmental disorders. Skills training programs improve child development and behavior, improve parenting skills, reduce caregiver mental health issues, and improve family functioning. Programs using culturally appropriate training material to improve the development, functioning, and participation of children within families and communities should be considered when caring for children with neurodevelopmental disorders.

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“…P. Simelane, 2020). Often, the complexities of disability, limited psycho-social support, poverty, unemployment and stigma negatively impact caregivers of children with DD, leaving them distressed and disconnected (Gladstone et al, 2018; Masefield et al, 2020; Mthombeni & Nwoye, 2018; Tekola et al, 2022). Caring for caregivers’ well-being and mental health may therefore represent a fundamental first step to support their capacity to provide nurturing care for their children.…”

Section: Introductionmentioning

confidence: 99%

Supporting caregivers of children with developmental disabilities: Findings from a brief caregiver well-being programme in South Africa

Schlebusch,

Chambers,

Rosenstein

et al. 2022

Autism

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Caring for children with developmental delays or disabilities places significant stress on caregivers, which is often exacerbated in low-resource settings. The World Health Organization developed a caregiver skills training for families of children with developmental delays or disabilities, which includes a three-session caregiver well-being module based on Acceptance and Commitment Therapy, that aims to help caregivers build psychological flexibility (i.e. the ability to focus on the present moment, make space for difficult thoughts and emotions and commit to value-driven actions that enrich their lives). We investigated whether this brief caregiver well-being programme was feasible, acceptable and contributed to positive outcomes for caregivers in a rural South African town. We adapted the intervention to the local context using a participatory approach. The ‘Well-Beans for Caregivers’ adaptation of the World Health Organization Caregiver Skills Training Caregiver Wellbeing module was then delivered by trained facilitators to a group of 10 caregivers in three weekly, 2-h sessions. Most caregivers were single and unemployed. Feedback from the facilitators, caregivers and trainee observers was obtained before, during and after the programme. Results suggested that this brief programme shows promise as a feasible and acceptable intervention, which may lead to improved caregiver well-being and mental health in communities in South Africa. Lay abstract Young children with developmental disabilities and delays who live in low- and middle-income countries are at significant risk of not reaching their full potential. We know that daily interactions with their caregivers (parents or other people taking care of them) play an important role in promoting their development. However, having a child with developmental disabilities can have a negative impact on carers’ mental health and well-being, which in turn can influence their capacity to care for their children. To date, very little attention has been given to the caregivers’ capacity to care. The World Health Organization developed a Caregiver Skills Training programme which includes a brief, three-session module that focuses on improving caregivers’ well-being and mental health. This well-being programme is based on acceptance and commitment therapy. Acceptance and commitment therapy shows increasing evidence of helping people respond to their stressors, thoughts, feelings and experiences a little differently and commit to small changes that are in line with their personal values. Acceptance and commitment therapy has shown promise in improving feelings of well-being in caregivers of children with developmental disabilities. We adapted the World Health Organization Caregiver Skills Training Caregiver well-being module to suit the South African context. The resultant ‘Well Beans for Caregivers’ was then delivered to caregivers from a rural, low-resource setting in South Africa. We found the intervention easy to implement, highly acceptable to caregivers and showed promising impacts on caregivers’ well-being and mental health. This intervention has the potential to be implemented widely and sustainably to build caregivers’ capacity to care for their children.

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The experiences of parents raising children with developmental disabilities in Ethiopia

Cited by 14 publications

References 47 publications

Challenges and coping mechanisms of parents of children with attention deficit hyperactivity disorder in Addis Ababa, Ethiopia: a qualitative study

Challenges and coping mechanisms of parents of children with attention deficit hyperactivity disorder in Addis Ababa, Ethiopia: a qualitative study

Caregiver skills training for caregivers of individuals with neurodevelopmental disorders: A systematic review and meta‐analysis

Supporting caregivers of children with developmental disabilities: Findings from a brief caregiver well-being programme in South Africa

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