Global Public Health 2018

1. Promoting Support Framework for Families of Children
with Special Needs through Community based Life Skills Center; A Case
Study of Pure Foundation Outreach Program
Dotun Akande (Pure Souls Learning Foundation)

2. Introduction
The Americans with Disabilities Act (ADA) defines a child with a disability more specifically as one who has a
physical or mental impairment that substantially limits the child’s ability to care for herself or himself, perform
manual tasks, or engage in any other “major life activity,” such as walking, seeing, hearing, speaking, breathing, or
learning, in an age-appropriate manner.
Special needs can range from, but are not limited to, people with autism, cerebral palsy, down syndrome, dyslexia,
blindness, ADHD, and cystic fibrosis. They can also include cleft lips and/or palates, port-wine stains, and missing
limbs (International Classification of Disease)
The family is a social system which is organized to meet the needs of its members physically, financially and
emotionally. As such, raising a child with disabilities can affect family life in many ways both positively and
negatively.(Dunst and Dempsey, 2007)

3. THE STATEMENT OF THE PROBLEM
This gap by weak enforcement of policies on disability
subjects low income families with special needs children to
lesser access to care and opportunities if at all and a ripple
effect on child and his family.
AIM
This research is a case study to use the analysis of a 3 day
outreach to make a case for community support framework
for families with special needs children.
Specific objectives
● To present the socio-demographic characteristics of
the parents at the 3 day outreach
● To analyse the present condition of these respondents
in relation to the children who are living with special
needs
● To make a case for community support framework for
families with special needs children.
SIGNIFICANCE OF THE STUDY
The access to information, support and care of children with
special needs will have effect on the family as a whole.
Therefore, this study will hopes to;
● provide a framework that can serve as a guide to
families, policy makers, health systems and the Nation
as a whole.
● ,Raise awareness, regarding the challenges that the
families face, to the public and the policy makers
● Showcase a low cost support skill center for children
with special needs that can be adapted and replicated
for social good.

4. Literature Review
1 billion people or 15% of the World’s population experience some form of disability. Persons with Disability on
average are more likely to experience adverse socio-economic outcomes than those without.(World Bank, 2018)
Out of the 93 million children (5 percent) aged 14 or younger live with a moderate or severe disability of some kind,
sub-Saharan Africa a higher percentage of children (6.4 percent) of disability.(SIDA, 2017). According to (Dardas
& Ahmad, 2014), the levels of parenting stress might be increased compared to families having children with typical
development.They found out that the families with autistic children tend to withdraw from activities that include
social contact. Moreover, some parents seem to choose to quit their jobs in order to support their child together with
the family members and professionals (Dardas & Ahmad, 2014)
In developed countries, a study by Dunst and Dempsey found out that many families are constantly engaged in
relationships, and often partnerships, with professionals (Dunst & Dempsey, 2007)Also, a meta-analysis conducted
to assess effects of interventions for families with special needs children found out that interventions (behavioural
parent training, coping skills intervention and a combination of the 2) in all three groups had significant effects on
reducing psychological distress among mothers and fathers of children with developmental disabilities.(Singer and
Colleagues, 2007)

5. Design and Methods
This is a quantitative survey carried out during the outreach held at the Patricks center in April 2018 with about 101
families who brought their children with developmental anomalies. This research is a case study design to describe
how the community outreach by Pure Souls Foundation is meeting an access need in Lagos, Nigeria.
The outreach was started at around 9am till about 4pm in the evening for the 3 consecutive days.Families with
affected children were mobilised through the most popular community based radio in Lagos State (Bond FM),
Facebook, and Whatsapp platforms.
A total number of 101 families were seen in the period of outreach. Only about 86 % of respondents agreed to fully
answer all the sections in the questionnaires.
The questionnaires was made up of open and close ended questions and administered just before the end of
counselling sessions in order to prevent perceived long waiting time and undue delay. Questionnaires were both self
and interviewer administered.

6. Results
A total number of 86 families agreed to fill the questionnaires
out of the 101 that came for the outreach.
Table 1: Socio-demographic data
Respondents’ relationship with the special need child
Variables Frequency Percentage (%)
Father 19
22.9
Mother 54
65.1
Others 10
12.0
No response 3
0
Father’s occupation
Private sector 27
35.1
Public sector 10
13.0
Artisan 33
42.9
Unemployed 2
2.6
Retired 5
6.5
No response 9
0
Total 86
100.0
Mother’s occupation
Private sector 23
28.8
Public sector 3
3.8
Artisan 51

7. Results
Table 2: Type of disability
Variables Frequency Percentage (%)
Cerebral palsy 17
27.4
Down syndrome 4
6.5
Ascending neuropathy 1
1.6
Autism 5
8.1
Hearing 2
3.2
Seizure 3
4.8
Slow learning 2
3.2
Speech delay 12
19.4
Table 3: Effect of special needs care on Family
Effect on spousal relationship
Yes 11
12.8
No 61
70.9
No response 14
16.3
Total 86
100.0
Ways by which the relationship is affected?
Separation/divorce 5
45.5
Child rejection 2
18.2
Quarrelling and fighting 3
27.3
Frustration 1
9.1
Total 11

8. Results
Table 4
Support in the care of the child
Yes 24
30.0
No 56
70.0
No response 6
0
Total 86
100.0
Parent being part of a support group or parent forum
Yes 5
6.0
No 78
94.0
No response 3
0
Total 86
100.0
Table 5
How did you hear about the consultation?
Doctor 3
2.9
Family member 2
1.9
Friend 21
20.4
Internet 6
5.8
Staff of Patrick 5
4.9
Radio programme 58
56.3
Child’s school 7
6.8
Total 101
100.0
Was the consultation useful to you?
Partially 1
1.0

9. Discussion
From the socio demographic findings, majority of the parents were artisans(42.9% for males and 63.8% for
females). This is a characteristic common to low income communities. The most common disability reported were
speech delay, cerebral palsy, Autism, and down syndrome which is slightly different from that in Europe where
Dyslexia and Autism appear to be the most popular anomalies observed.
Majority of the respondents reported negative effect on family finances while about 12.8% of the respondents
mentioned that the disability affected their relationship through divorce (45.5%) quarrelling and fighting
927.3%), child rejection(18.2%) and frustration (9.1%). This aligns with earlier studies by Mulroy et al, 2008, and
Dardas and Ahmad, 2014 where parents withdrew from circles and quit jobs. On support system, about 70% of the
respondents did not have any support in the care of the child and worse still, about 98% of the respondents did not
belong to any support group or parent forum. This is totally in opposition to earlier studies in US where families
were constantly engaged in relationships, and often partnerships, with professionals (Dunst and Dempsey, 2007).
(Singer and Colleague, 2007) also reported a meta analysis survey where the 3 styles of intervention introduced
reduce psychological stress between these parents.

10. Conclusion
This is a descriptive analytic report of a 3 day outreach for low income families with special needs children in
Lagos, Nigeria. The report clearly showed the need for a community support strategy to help these families cope
with the peculiarities and promote better well being for the children. The Foundation has also showcased the
proactive measures it is taken to tackle this concern. Pure Souls Learning Foundation is therefore open to
discussions and collaborations that will help scale these support initiatives across Nigeria and Africa. Our interests is
in use of simple SMS enabled technology to gain access to families without internet supply, the engagement of
policy makers to disseminate research findings and on how to scale these community support centers across Nigeria.
References
Dardas, Latefa Ali, Ahmad Muayyad M.Psychosocial Correlates of Parenting a Child with Autistic Disorder.Journal of Nursing Research: September 2014. ,Volume 22, Issue 3, page 183-191
International Classification of Disease (ICD). World Health Organization. Archived from the original on 12th February, 2014
Michael Eskay, Obidiya Eskay, and Emea Uma. Educating People With Special Needs in Nigeria: Present and Future Perspectives. US-China Education Review B 10 (2012) 898-906
World Bank 2018. World Report on Disability. Disability Inclusion. Updated March 28th, 2018. http://www.worldbank.org/en/topic/disability
Tu, HT; Cunningham, PJ (2005). "Public coverage provides vital safety net for children with special health care needs". Issue brief (Center for Studying Health System Change)(98): 1–7.
SIDA 2015. Disability Rights in Sub Saharan Africa. https://www.sida.se/globalassets/sida/eng/partners/human-rights-based-approach/disability/rights-of-persons-with-disabilities-sub-saharan-africa.pdf
Stephen Anderson, Ronald Sabatelli. 2007. Family Interaction: A Multigenerational Developmental Perspective, 4th Edition.
S. Mulroy, L Robertson, K. Aiberti, H Leonard, C. Bower. The impact of having a sibling with an Intellectual Disability: Parental Perspectives in Two Disorders 2008. Volume 52, Issue 3
United States Census Bureau. Report on Disability. https://www.census.gov/topics/health/disability.html