Using community/researcher partnerships to develop a culturally relevant intervention for children with communication disabilities in Kenya

Figures & data

Table I.  Stakeholders and data collection methods.

Stakeholders	Data collection method
	Focus group discussions (FGD) Number of groups (No. of participants)	Participatory workshops (PWs) Number of groups (No. of participants)
Women's groups	3 (47)	2 × 8 (35)
Disabled people's group	2 (31)
Traditional dancers	1 (13)
Totals	6 (91)	16 (35)
Total hours of data collection	12	32

Table II.  Check list of questions to help facilitate FGD.

Check list of questions:
1. What does communication disability mean to you?
2. What are the attitudes towards children with disability?
3. What are their needs?
4. How are the needs met/not met?
5. How are they treated?
6. What could you do to help meet these needs?
7. What problems do their families face?
8. How could you help the families?
9. What can we do to help you do that?

Table III.  The sessions for the PW based on suggestions from the FGD.

Session 1	Introduction/FGDs on problems	Share idea of the project with the WGs introducing and explaining about children with communication disability through role play and discussion. Discuss some of the problems they might face. Explain what participation in the programme will involve, seek their participation but give the opportunity to withdraw at any time.
Session 2	FGDs on problems	Explore the groups perceptions of the problems faced by children with communication disabilities and their families.
Session 3	Strategies for inclusion (school, home activities, outings, Family events)	Explore strategies for including the children in everyday activities that are within the power and capabilities of the women's groups. Identify any activities that could be facilitated by input from the researchers.
Session 4	Awareness about causes and prevention	Look at local perceptions of causes and prevention. Compare their perceptions with other perceptions.
Session 5	Communication skills/talking to children about what happening	Explore the process of stimulating language and communication through experiential learning. Identify the everyday activities of the local communities and relate these to communication activities.
Session 6	Negative attitudes/what can women groups do	Identify and explore the local negative attitudes towards these children and their families, discuss what local women's groups could do about these.
Session 7	Social integration.	Consider further what strategies could be used to promote the social integration of these children. Identifying which strategies might be acceptable and sustainable to the various sections of the community.
Session 8	Drawing together/feedback on intervention	Review the sessions and reflect on what has been covered giving opportunity to revisit any section that needed further attention.

Table IV.  Problems identified and Intervention ideas suggested by the women's groups in the participatory workshops.

Problem	(Evidence from PWs)	Intervention action
Confusion as to what communication and its breakdown involves	‘What is communication in our language? We do not have a word for it …	What is communication?
	M:1 (To understand one another)	What is communication disability?
	M:3 (To listen to one another)
	M:2 (To converse)
	M:1 (To compromise)
	M:4 (To talk and to converse)’ (WG1)
	‘The problem is that when we hear of disability we just think of only those who can't walk … ’ Isn't a deaf person disabled?’ (WG2)
Many don't believe that disabled people can do anything good, that they are all ‘stupid’	‘Also there is one in our place a very big beautiful girl. There was a time I asked her to fetch some water for me she didn't look as if she was getting whatever I was telling her. Many people thought she was stupid … I asked another person who confirmed to me that she is deaf’. (WG2)	Exposure to role-models of people with communication disabilities.
Negative attitudes towards people with disability. People do not understand and are not tolerant of the problems parents face.	‘To add onto that, sometimes us mothers hide these children in case of visitors. Well he is my own child but because I know he is abnormal, I feel I should hide him for I think he will bring problems to the visitors whereas I could leave him to play with the other children he would be calm and enjoy himself. So us parents, isolate them’. (WG1)	Explore people's attitudes towards children with communication disabilities and their families. Consider how they might be changed.
Children who cannot communicate face lots of problems	‘Those people face some problems. Let's talk the example of this child who can walk but can't speak nor hear, on the way somebody can beat him without any reason and she can't report, or sometimes they are raped, then they can't report so they just suffer, if maybe she can write it's easier she can write the name of the person and what he has done for her, but if she can't she just remains with such problems’. (WG1)	Identify and explore problems faced by children who cannot communicate and their families.
	‘Sometimes they may be refused to eat or not given food and she can't report’. (WG2)
Don't know how they can help	‘If we identify these parents who have such children and call them at a place like this, where we can explain to them I don't think they can refuse for it is a good way of helping those disabled children, but we need to know what to do’. (WG1)	What action can the group take?
		Research facilitators share simple strategies that might help.
Don't know what advice to give to families	‘As the parent, you feel so bad for you don't know the cause whether she was bewitched or it is God given. What we know is that God created her that way so you will not know how to help the child to either talk or communicate’. (WG1)	What advice can the group give?
		Research facilitators share simple strategies that might help
Where are the children?	‘To help them, we should call a meeting tell the parents to bring them so that we can see who they are and how we can help them’. (WG2)	Identification of the children in their area.
Parents are the people to work with	‘The simple way is for us to educate one another on the ways we can use to help those children then educate the parents on those ways, so if we have agreed then us as the group and the parents can look for these ways of helping those children’. (WG1)	Women to contact the parents of identified children, invite to group session, share ideas.
Aids can help but they are not available and we don't know how to make them	‘… this one who can't walk (athegwethegwe) completely can be taken to hospital and maybe given a wheelchair (kigari) which will make it easy to go to school and learn if the hands are alright, it is only the legs and it is easy for them. For the children who cannot talk we do not know what to make’. (WG2)	Making aids including special seating and communication boards so that children can be included. Research facilitators to share information on this
Epilepsy is a big problem; don't know how to help	‘Some children couldn't be talking and even walking but may get fever which results into fitting …’‘… Like for my grandchild he always need drugs so as not to fit’. (WG1)	Lessons on managing fits and epilepsy.
	‘She is fitting, maybe she has fever or not, you can just find her fitting, so you might ask yourself some questions, is this epilepsy or what type of fitting is that so you will help by pouring some water on that child’. (WG2)
Children are not included in family events and therefore don't learn to talk.	‘That is the light. For if a child can't talk, there is not much you can do with her, you just give him food, maybe there are some activities she can do or sometimes she can't, but if she is taken to school, she can learn to understand herself and others’.	Inclusion in everyday activities for social and educational stimulation.
Children don't have anything to talk about … left to their own devises.	‘They can teach them at home like small children playing with coconut shells, when this one puts soil in the other one also does that, so they teach one another at home, that won't need money; they teach them just at home’. (WG2)	Making local toys and play local games.
Some children can sign but we cannot talk to them because we cannot sign … . Or we cannot teach a child to sign who is deaf …	‘Also there is one in our place a very big beautiful girl. There was a time I asked her to fetch some water for me she didn't look as if she was getting whatever I was telling her … then I asked another person who confirmed to me that she is deaf’. (WG2)	Learning some local sign language
	‘Even other people should be educated on how to use signs for they might in future give birth to such children; and given that they will already have the knowledge it will be easier to them to handle them’. (WG1)
Children are excluded from school and abused.	‘Some don't take such children to school. There used to be another man called KG who had a daughter who could not talk, she was not yet mature but she was raped. People used to convince him to take her to school but in vain. Now the girl died. Some don't take them to school they keep them at home until they die’. (WG2)	Strategies for encouraging schools to include disabled children and parents to take their children to school.
Community members don't understand	‘I know a child who was drowned to death by parents and relatives because he had a disability. They thought he was curse that would bring misfortune’. (WG2)	Mobilizing community groups such as the traditional dancing groups to pass messages.