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The Role of the Family Network When Raising a Child with a Disability in Low- and Middle-Income Countries

BIZZEGO, Andrea
LIM, Mengyu
DIMITRIOU, Dagmara
ESPOSITO, Gianluca
2021

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Family plays a role in supporting child development, by facilitating caregiving and other parental practices. Low- and middle-income families typically have a complex structure with many relatives living together in the same household. The role of family and family complexity in the caregiving of children with disabilities is still unknown. In this study, we use data from N = 22,405 children with severe (N = 876) and mild or no disability (N = 21,529) from a large dataset collected in the 2005–2007 Multiple Indicator Cluster Survey. In particular, we adopt PageRank, a well-known algorithm used by search engines, to quantify the importance of each child in the family network. We then analyze the level of caregiving the child received in light of the child’s importance and developmental status, using a generalized linear model. Results show a main effect of child’s importance and of the interaction of child’s importance and developmental status. Post hoc analysis reveals that higher child importance is associated with a better caregiving outcome only for children with mild or no disability.

Development of self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Process evaluation

GONA, Joseph K.
NEWTON, Charles
HARTLEY, Sally
BUNNING, Karen
July 2020

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Background: Caring for a child with disabilities in a resource-poor setting brings many challenges to the caregiver. We examined the development of self-help groups for caregivers in a rural part of Kenya.

 

Objectives: To conduct a process evaluation on the development of self-help groups during a 10-month set-up period, focusing on implementation and mechanisms associated with their functional status.

 

Methods: Using a realist evaluation design, we set up 20 self-help groups for 254 caregivers. An evaluation was conducted to investigate implementation and mechanisms of impact. Implementation focused on caregiver registration, community group support and monitoring visit compliance. Data were collected from group registers, records of meetings and field notes. Mechanisms of impact employed a framework of strengths–weaknesses–opportunities–threats to review the groups at the end of the 10-month set-up period.

 

Results: Recruitment resulted in registration of 254 participants to 18 groups – two groups disbanded early. Post-evaluation included 11 active and 7 inactive groups. Compliance with the monitoring visits was consistent across the active groups. All groups engaged in ‘merry-go-round’ activities. The active groups were characterised by strong leadership and at least one successful income generation project; the inactive had inconsistent leadership and had dishonest behaviour both within the group and/or externally in the community. Mediators associated with functional status included the following: available literacy and numeracy skills, regular meetings with consistent attendance by the members, viable income generating projects, geographical proximity of membership and strong leadership for managing threats.

 

Conclusion: Self-help groups have the potential to progress in resource-poor settings. However, critical to group progression are literacy and numeracy skills amongst the members, their geographical proximity, regular meetings of the group, viable income generating projects and strong leadership.

 

 

African Journal of Disability, Vol 9, 2020

The development and evaluation of content validity of the Zambia Spina Bifida Functional Measure: Preliminary studies

MWESHI, Margaret M.
AMOSUN, Seyi L.
SHILALUKEY-NGOMA, Mary P.
MUNALULA-NKANDU, Esther
KAFAAR, Zuhayr
2017

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Background: Very little is known on outcome measures for children with spina bifida (SB) in Zambia. If rehabilitation professionals managing children with SB in Zambia and other parts of sub-Saharan Africa are to instigate measuring outcomes routinely, a tool has to be made available. The main objective of this study was to develop an appropriate and culturally sensitive instrument for evaluating the impact of the interventions on children with SB in Zambia.


Methods: A mixed design method was used for the study. Domains were identified retrospectively and confirmation was done through a systematic review study. Items were generated through semi-structured interviews and focus group discussions. Qualitative data were downloaded, translated into English, transcribed verbatim and presented. These were then placed into categories of the main domains of care deductively through the process of manifest content analysis. Descriptive statistics, alpha coefficient and index of content validity were calculated using SPSS.


Results: Self-care, mobility and social function were identified as main domains, while participation and communication were sub-domains. A total of 100 statements were generated and 78 items were selected deductively. An alpha coefficient of 0.98 was computed and experts judged the items.


Conclusions: The new functional measure with an acceptable level of content validity titled Zambia Spina Bifida Functional Measure (ZSBFM) was developed. It was designed to evaluate effectiveness of interventions given to children with SB from the age of 6 months to 5 years. Psychometric properties of reliability and construct validity were tested and are reported in another study.

Human Rights

www.macao-tz.org
December 2014

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Malezi AIDS Care Awareness Organization (MACAO) is a non-profit organization reaching out to neglected Indigenous people in Ngorongoro District, Arusha Region of Northern Tanzania.  Macao founded in 2003, Macao is a humanitarian organization that provides assistance to approximately 200,000 Indigenous Maasai community in Ngorongoro district for addressing needs of water and sanitation, food security, health Care Research, Education, Research environment, Maasai Traditional Research, Human Rights and sustainable economic development by strengthening their livelihoods.  In addition to responding to major relief situations, MACAO focuses on long-term community development through over 4 Area Development Project. We welcome the donors and volunteers to join us in this programs, we are wolking in ruro villages.

Children with learning disabilities: A phenomenological study of the lived experiences of Iranian mothers

KERMANSHAHI, S M
VANAKI, Z
AHMADI, F
KAZEMNEJAD, A
AZADFALAH, P
2009

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Nursing as a family-oriented profession involves supporting mothers of children with learning disabilities to gain an awareness of their role. However, few studies have explored the whole experience of such mothers. This study embarks on an understanding of lived experiences of Iranian mothers who have children with learning disabilities. A qualitative approach was adopted using the phenomenology of semi-structured interviews carried out with six Iranian mothers whose children attended a special school in Tehran. The data were analysed in line with van Manen’s suggestions. Two main themes were abstracted; being the centre of stress circles and being in the midst of life and death. Themes include care management challenges for self and child, experiencing through helplessness and hopefulness and experiencing self devote and self neglect. Overall, a majority of mothers experienced a stressful life. The study concludes that Iranian mothers’ lived experience of having children with learning disabilities can be likened to the constant swing of a pendulum between two polarities of positive and negative feelings. This knowledge can provide an heuristic to help health staff guide mothers in adjusting to their children who have learning disabilities.

Keeping the promise : interventions by persons with disabilities against HIV/AIDS

HANDICAP INTERNATIONAL KENYA
2009

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People with disabilities, including people with disabilities who are living with HIV, are often excluded from their community and their family. This video presents testimonies of people with disabilities who are living with HIV and proposes actions in Kenya to fight against their exclusion. For example, it highlights support groups that have been created to educate people with disabilities, living with HIV or not, on sexuality, HIV/AIDS, and how to live positively with disabilities and reduce the stress caused by them. Another section of the video presents a support group for parents of children with disabilities where it is encouraged to talk about sexual abuse and violence on children and prevention of sexually transmitted diseases. Support groups for hearing and visually impaired people are also presented in the video. In addition to support groups, education and prevention are also promoted by through sport and street shows which contribute to the social inclusion of people with disabilities living with HIV

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