Investigating the experiences, beliefs and needs of street connected children with communication disabilities and their caregivers in Western Kenya. Part of the ‘LEAP from the Street’ – Learning, Educating And Protecting’ project Presented by On behalf of the LEAP Research Team
The collaborators • Chance for Childhood • Yellow House Outreach Services, Kisumu, Kenya • Kisumu Urban Apostolate Programmes, Kisumu, Kenya • Manchester Metropolitan University, UK • Maseno University, Kisumu, Kenya • FUNDED by COMIC RELIEF
The context for the research • Parallel project alongside the main LEAP programme • Based in and around Kisumu, Western Kenya • LEAP works with street-connected children with special educational needs, including communication disabilities • LEAP’s main aims are: • Better access to quality, inclusive education • Greater protection and fair treatment within education and custodial system • Positive change in attitudes and behaviours amongst parents and communities to • reducing violence towards children • improving care and reducing stigma • Improved knowledge amongst service providers and government
The gap in knowledge: Impact of communication disability People with communication disability (CD) have difficulty understanding and/or expressing themselves in spoken or signed language Informal screening by Yellow House identified: • a sub-group of LEAP project children with communication disabilities • a lack of knowledge and understanding of the experiences of these children and their families, in relation to their communication disability • a lack of understanding of the specific needs of the children and their families
Research design and questions Qualitative research study, using interviews and focus groups. What are the experiences, attitudes, beliefs and needs of : 1. Street-connected children with communication disabilities? 2. Caregivers of street connected children with communication disabilities, in relation to their child’s communication disability? 3. Learning Support Assistants (LSAs) supporting street connected children with communication disabilities in school, in relation to the child’s communication disability? Information gained would allow services to be developed for this sub-group
Collaborative Research with secondary aim of increasing local research capacity UK team role Kisumu team role To advise on cultural aspects of design, To oversee the research recruitment and data collection To lead on research design To recruit participants To train local team to undertake the To conduct and translate all interviews data collection and focus groups To lead on analysis To advise on interpretation of findings To prepare dissemination materials To disseminate locally
Training Programme Practical training took place in 2 blocks • 2 days in March 2017 at start of project • 5 days in Jan 2018 at start of data collection Topics covered • Introduction to ethical research • Understanding informed consent • Qualitative interviewing techniques • Interviewing children with communication disability • Translation and transcription • Follow up training and monitoring in May and July 2018
Recruitment and informed consent • Potential participants identified from LEAP programme records • CD already assessed as part of pathway through LEAP programme • Purposive sampling to include range of CD, family and geographical contexts • Initial approach through familiar member of LEAP team • Followed up by informed consent visit • PIS and consent forms: in local languages and full/easy read and symbol form • Research team trained to go through verbally • Child assent also sought • Separate photo consent sought
Sample recruited Children N=13 Caregivers N=12 LSAs N=12 Age range 8-10 8 Relation Mother 7 Gender Female 6 11-15 5 Father 3 Male 6 Home Community 9 Aunt 1 Prev. Occ. Teacher 5 Children’s 4 Grandmother 1 Social work 2 Home Setting Urban 6 Counsellor 1 LSA support < 6 mth 9 Peri-urban 1 Health 1 6-12 mth 0 Rural 5 None 3 12-18 mth 4 Child’s CD Stammer 5 CDs supported Stammer 7 Primary CD Stammer 5 Receptive 3 Receptive 4 Receptive 5 Expressive 2 Expressive 0 Expressive 0 Social comm 0 Social comm 4 Social comm 3 Learning 3 Learning 2 Learning 1 difficulties difficulties difficulties
Data collection - primary caregivers One to one in depth interview at home To talk about: • Child’s communication difficulties • Beliefs about child’s communication difficulties • Impact on the child’s and family’s life • What might help the child /family • Expectations for the child’s future
Data collection - LSAs Two focus groups (6 participants each): • Awareness and understanding of communication disability in street- connected children • Impact of child’s communication difficulties/ disabilities in school • How the children are treated by others in school • What support might help the children • Expectations for the child’s future.
Data collection – children One to one activity based session at home or school. To talk about: • Participation in school & home • What is easy/ difficult; like/ dislike • How others treat them • What might help / what they want to change • How they see their future • Awareness of communication difficulties
Translation and transcription • Interviews and children’s sessions offered in participant preferred language • LSA focus groups mainly in English as language of workplace • All sessions audio-recorded • Completed by local research team members (usually interviewer and one other) • Translation to English and transcription carried out in single stage • Trained to translate everything said for meaning as fully as possible
Analysis MMU team’s role Kenya team’s role • Complete initial analysis • Check transcriptions and send encrypted to UK • Ask for advice on interpretations • Help UK team to understand • Feedback to local team on context of comments emerging themes • Help UK team to interpret parts • Incorporate local teams input of the interviews into the final analysis • Give feedback on emerging themes during MMU team visits
Analysis approach • Phenomenological i.e. values experiences of participants as experienced by them • Thematic • Draws on Framework method as described by Gale et al (2013)* • NVIVO Pro 11 used to organise data and facilitate analysis • Each participant group analysed separately • Themes compared for similarities/discrepancies and synthesised *Gale et al. BMC Medical Research Methodology 2013, 13:117
Findings: 5 main themes 1. Understanding and awareness of Communication Disability 2. The role of others 3. Needs of the children 4. Needs of those who support the children 5. Expectations for the future
1. Understanding and awareness of Communication Disability • Caregiver awareness and understanding develops with time and experience • Caregivers and LSAs can describe communication disability • Children’s awareness varied; link between awareness and emotions • Wide range of beliefs about cause ; incidents in child’s life, own experiences, views of others all influence
[he is] unable to obtain or to get well whatever he's being taught in class or At times she wants to explain something but has difficulty whatever he is being on how to [...] She wants tell you but explaining is not communicated to by easy. How she explains you cannot understand [...] She can anyone (LSA) explain but not deeper (Caregiver) that person who has challenges in I feel bad…because I can’t talk well speech, that is they have difficulty and I have a lot of stops and blocks in giving account or pronouncing or in my speech (Child) quoting the words (LSA) I like speaking very little [Int: Are there people My child is a stammerer and he who don’t understand you when you speak?] takes time to pronounce words Yes [Int: Why do you think they don’t understand especially when angered you?] Because they don’t want to understand (Caregiver) me (Child)
2. The role of others • Theme prevalent across all participant groups • Others influence the experience of CD • Range of positive and negative experiences of other’s attitudes and behaviours reported • Impact of CD is compounded or lessened by attitude and behaviours of others. • Includes teachers, adults in the community and particularly other children • Experience and familiarity influence other’s attitudes • Ripple effect; role models (e.g. LSAs in class) promote positive attitudes
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