Parenting children with intellectual disabilities in Malawi: the impact that reaches beyond coping?

Masulani-Mwale, Charles; Mathanga, Don P.; Silungwe, D; Kauye, Felix; Gladstone, Melissa

doi:10.1111/cch.12368

Cited by 56 publications

(73 citation statements)

References 34 publications

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“…The low mood and sense of helplessness expressed by the caregivers was associated with a lack of support, both within the family and externally in the community as reported previously [5,6,10,17,24). Indeed, the common experience was one of psychological stress and daily challenges, which concurs with the work of Masulani-Mwale [26]. The burden of caregiving appeared to be related to a lack of agency or control over the events that challenged on a daily basis.…”

Section: Discussionsupporting

confidence: 63%

“…Zimmerman and colleagues [31][32][33][34]58] might explain this as the antithesis of empowerment. Having a child with a disability was considered generally incongruent with acceptability in the prevailing culture, and indeed triggered negative responses from others in the family and in the community as reported previously [4,5,[17][18][19][21][22][23][24][25][26]. Thus both caregiver and child were effectively marginalised in their own community, with a lack of knowledge, limited support and no opportunity for joining their efforts with others-critical components of the empowerment construct described by Perkins & Zimmerman [58].…”

Section: Discussionmentioning

confidence: 95%

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Empowering self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Impacts and their underlying mechanisms

Bunning¹,

Gona²,

Newton³

et al. 2020

PLoS ONE

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Bringing up a child with disabilities in a low-income setting is challenged by inadequate resources, limited psycho-social support and poverty. Not surprisingly, many caregivers experience fatigue, distress and isolation. To address and investigate these issues, action was taken to set up twenty self-help groups focusing on caregiver empowerment. A realist evaluation design was adopted to evaluate impacts associated with the self-help process and to identify mechanisms determining the outcomes. Monthly monitoring visits were conducted to the groups during a ten-month set-up period, at the end of which eleven active groups remained, nine having dissolved due to disputes, corruption and extreme environmental conditions. A facilitated intervention was delivered to the active groups (N = 154) over a six-month period. The members were guided to review and discuss topics such as economic empowerment, personal situation, peer support, community inclusion, access to health and education. Evaluation employed mixed methods using questionnaires (n = 75) and semi-structured interviews (n = 36) pre-and post-intervention. At baseline, the burden of caregiving was characterised by aloneness, challenges, stigma and discrimination. Post-intervention, caregiver agency was defined by togetherness, capacity-building, acceptance and well-being. Significant impacts associated with caregiver perceptions included increased social support, reduced severity of child's disability and decreased effects of extrinsic factors affecting the caregiver's role. Mechanisms of 'handling goods and money' and 'social ties and support' appeared to underpin the outcomes. Caregiver empowerment was associated with newly developed skills, social connectedness and resource mobilisation. Documentation of group processes contributes to the evidence on community-based inclusive development. PLOS ONEPLOS ONE | https://doi.org/10.

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Section: Discussionsupporting

confidence: 63%

Section: Discussionmentioning

confidence: 95%

Empowering self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Impacts and their underlying mechanisms

Bunning¹,

Gona²,

Newton³

et al. 2020

PLoS ONE

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“…We assume that if there are communication difficulties, understanding becomes complicated. Based on the literature, we believe attitudes towards disability would improve with interaction and information [ 48 ]. Further studies would be recommended to clarify this possible relation.…”

Section: Discussionmentioning

confidence: 99%

Attitude towards People with Disability of Nursing and Physiotherapy Students

et al. 2020

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Background: Attitudes are a component of our behaviour. Health professionals should have a global perspective of disability. They must provide treatment to people with disability and care for them, but they also should accept them with no judgements or discrimination. The general objective of this study was to know the attitude towards people with disability of nursing and physiotherapy students at the University of Cadiz. Methods: This was a descriptive, correlational, transversal and synchronous study. A total of 200 students participated in the study (91 from the bachelor’s degree in nursing and 109 from the bachelor’s degree in physiotherapy). The ‘Attitudes towards people with disability scale’ was used. Results: The mean score for both groups of students was 157.05 (SD = 14.14). Conclusions: Attitudes towards disability of nursing and physiotherapy students at the University of Cadiz tend to be positive. However, this was considered not sufficient since they will be health professionals in the future.

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“…Healthcare workers have addressed that mothers can burnout, become depressed, and experience suicidal ideation when caring for children with physical disabilities, which may lead to neglect or abuse of the child. (14,41,42) One Malawian study reported marriage breakdowns as a consequence of a child's CM. (7) In response, caregivers have described the need for peer support groups, and healthcare workers have suggested group counselling for caregivers of children with neurodisabilities.…”

Section: Resultsmentioning

confidence: 99%

“We Can’t Handle Things We don’t Know About”: Perceived Neurorehabilitation Needs and Challenges for Malawian Paediatric Cerebral Malaria Survivors

Boubour

Mboma

et al. 2020

Preprint

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Background: We sought to identify perceptions of neurorehabilitation needs and challenges for paediatric cerebral malaria (CM) survivors post-hospital discharge at Queen Elizabeth Central Hospital (QECH) in Blantyre, Malawi. Methods: An exploratory approach was used to qualitatively investigate current available neurorehabilitation services; investigate the needs of caregivers, CM survivors, providers, and the community; and identify challenges and methods to accessing neurorehabilitation services. Data were collected through semi-structured in-depth interviews (IDIs) and focus group discussions (FGDs).Results: Eighteen data-gathering sessions were conducted with 38 total participants, including 3 FGDs with 23 primary caregivers, 11 IDIs with healthcare workers at QECH, and 4 IDIs with community-based rehabilitation workers (CRWs). FGDs revealed that caregivers lack important knowledge about CM and fear recurrence of CM in their children. Post-CM children and families experience substantial stigma and sociocultural barriers to integrating into their community and accessing neurorehabilitative care. At a community-level, rehabilitation infrastructure, including trained staff, equipment, and programmes, is extremely limited. Rehabilitation services are inequitably accessible, and community-based rehabilitation remains largely unavailable.Conclusions: There is an urgent need to establish further training of rehabilitation personnel at all levels and to build accessible rehabilitation infrastructure in Malawi for post-CM patients. Additional work is required to expand this study across multiple regions for a holistic understanding of neurorehabilitation needs.

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Parenting children with intellectual disabilities in Malawi: the impact that reaches beyond coping?

Cited by 56 publications

References 34 publications

Empowering self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Impacts and their underlying mechanisms

Empowering self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Impacts and their underlying mechanisms

Attitude towards People with Disability of Nursing and Physiotherapy Students

“We Can’t Handle Things We don’t Know About”: Perceived Neurorehabilitation Needs and Challenges for Malawian Paediatric Cerebral Malaria Survivors

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