Investigating the experiences, beliefs and needs of street connected - - PowerPoint PPT Presentation

Investigating the experiences, beliefs and needs

• f 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

To oversee the research To lead on research design To train local team to undertake the data collection To lead on analysis To prepare dissemination materials

Kisumu team role To advise on cultural aspects of design, recruitment and data collection To recruit participants To conduct and translate all interviews and focus groups To advise on interpretation of findings 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

Age range 8-10 8 11-15 5 Home Community 9 Children’s Home 4 LSA support < 6 mth 9 6-12 mth 12-18 mth 4 Primary CD Stammer 5 Receptive 5 Expressive Social comm 3 Learning difficulties 2 Caregivers N=12 Relation Mother 7 Father 3 Aunt 1 Grandmother 1 Setting Urban 6 Peri-urban 1 Rural 5 Child’s CD Stammer 5 Receptive 3 Expressive 2 Social comm Learning difficulties 3 LSAs N=12 Gender Female 6 Male 6

• Prev. Occ.

Teacher 5 Social work 2 Counsellor 1 Health 1 None 3 CDs supported Stammer 7 Receptive 4 Expressive Social comm 4 Learning difficulties 1

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
• thers 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

• r 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
• ne 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

• Complete initial analysis
• Ask for advice on interpretations
• Feedback to local team on

emerging themes

• Incorporate local teams input

into the final analysis

Kenya team’s role

• Check transcriptions and send

encrypted to UK

• Help UK team to understand

context of comments

• Help UK team to interpret parts
• f the interviews
• 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

At times she wants to explain something but has difficulty

• n how to [...] She wants tell you but explaining is not
• easy. How she explains you cannot understand [...] She can

explain but not deeper (Caregiver) My child is a stammerer and he takes time to pronounce words especially when angered (Caregiver) I feel bad…because I can’t talk well and I have a lot of stops and blocks in my speech (Child) I like speaking very little [Int: Are there people who don’t understand you when you speak?] Yes [Int: Why do you think they don’t understand you?] Because they don’t want to understand me (Child) that person who has challenges in speech, that is they have difficulty in giving account or pronouncing or quoting the words (LSA) [he is] unable to obtain or to get well whatever he's being taught in class or whatever he is being communicated to by anyone (LSA)

• 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
• thers.
• 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

At times before he explains everything, the teacher’s just interrupted, so always feels withdrawn (LSA) My child has no difficulty in associating with other child, he plays with them and they respect him the way he is (caregiver) Those children then laughed at him, the other children, they laughed at him. So this will demoralize everything and the performance also, so this child cannot participate (LSA) He doesn’t like playing with

• ther children because they

keep on insulting him and that can make him fight (caregiver) There are some children who abuse me at times they laugh at me (Child) D is my best friend… He helps me at school when I face difficulties in class such as reading and answering questions (Child) Before I used to take them as children who cannot be integrated into class, you cannot teach them anything, but since I have started working with them my perception

• f them has really changed (LSA)

The way you’ve come here, the child is being support by many people not only teachers. Even

• ther people have come and have seen the

improvements in the child. From there people start understanding (Caregiver)

The role of others

• 3. Needs of the children

Much can be done in immediate environment to help the child, but some specialist input also needed

• LSAs and caregivers focussed mainly on:
• Improving emotional well-being of the children
• Adapting communication and teaching to accommodate the children’s CD
• Specialist support and aids
• Children gave little insight themselves
• People should be ‘good to them’
• General help with school
• One mentioned operation

Support and love is very important to children with CD (Caregiver) If you tell him something, you must slower the speed.....slowly, slowly (Caregiver) These children should be their side helped with some communication devices which can help them to communicate very well (LSA) If they can get someone who can explain to them slowly because when I look at my boy, he’s not someone who needs a tough teacher [...] If you take him slowly, he understand (Caregiver) They should take me to the doctor…so that the doctor can look into my mouth and remove those things that are making me not speak well (Child) These children need a lot of patience and understanding them. You must know them well. For them to get anything from you, you have to be very close to them. They have to know you and you have to know them (LSA)

Needs of the children

[teachers] should be good to me (Child)

• 4. Needs of those who support
• Empowerment and support from others
• More training for themselves
• Increased awareness and support from teachers and others in community
• More time to spend supporting the children (LSAs)
• Financial support (caregivers)
• Some mention of emotional, spiritual or practical support

We need to be empowered in terms of training on how to help these children with communication disability (LSA) If you have money, a child can be trained to work. He can also have a choice (caregiver) At least sometimes we go and talk to God to give you like knowledge and any other thing you need... at times we need the divine intervention (LSA) Parents should be followed up to their households and be interviewed the same way you are now interviewing me. This can make them happy (caregiver) Parents should be trained on how to handle and understand children with CD (Caregiver) To help them better I need to give them more time, more LSA time in school (LSA)

Needs of those who support

• 5. The future

An uncertain future; caregiver and LSA concerns

• How would children cope without caregiver support?
• Would they be maltreated as adults?

A bright future; happiness, work and family

• Children were ambitious for their future
• All but one saw themselves married with children of their own
• Caregivers and LSAs had ambitions but also concerns; children would need

support to reach their potential

• Some saw child strengths as a means to future

Even if you are maybe having a communication disability that does not hinder you from being somebody in the future (LSA) He has kept on telling me that he will be an Architect and he is also perfect in drawing therefore I imagine that he will do exactly that (Caregiver) That one wants to be a teacher and will be a good teacher from what I see (LSA 68) When he grows up, first he has to go for a job like manual work, he can do (Caregiver) I do not want her getting married [...] that person may hit her, mistreat her. I think it’s better if I just stay with her (Caregiver) The way people are doing thing faster, I always feel that he will be affected if he’ll not be able to catch up with things (Caregiver) Pilot Mechanic Driver Skater Banker Nurse Doctor

The future

Six key messages from participants views

• 1. Street-connected children with communication disability and their

caregivers have additional needs

• 2. The impact of CD on children and caregivers can be reduced by

promoting positive attitudes in others, especially peers

• 3. Positive attitudes might be best promoted through experience and

familiarity, rather than training

• 4. People need to know how to adapt their communication to the child
• 5. Emotional well-being and trusted relationships are important; adapted

communication and increased understanding of CD will support these.

• 6. Caregivers and LSAs think they could do more to help the children

themselves, with training and the support of others

Ideas for service development

• Screen for communication disability
• Develop a team of role models to raise awareness and improve attitudes
• Widen/reinforce role of LSAs (or community workers) as ‘communication champions’

in school and community

• Involve people with CD as advocates
• Consider peer mentor and buddying schemes for peers
• Include caregivers in training; provide direct support
• Train all programme workers to recognise CD and know how to adapt their

communication

• Ensure all additional interventions for street connected children (e.g.

counselling support) are adapted to child’s level of communication

Thanks to our research team and collaborators

Kenya Research Co-ordinator: David Rochus Kenya Research Team:

• LEAP project co-ordinators: Paul Woniaye, Christine Etakwa, Frida Okombo
• CEO Yellow House: Rachael Gibson
• University of Maseno: Prof Edwards Kochung
• Chance for Childhood: Connie Wu, Glynnis Cummings-John
• Manchester Metropolitan University: Julie Marshall, Carol Taylor, Christina Sotiropoulou Drosopoulou

Yellow House:

• Jesse Gatoto Mbote
• Gregory Masayi Nanzayi
• Julyne Olero
• Florence Omolo
• Aneliese Ambrose

KUAP:

• Dorine Oluoch
• Dickson Omanje
• Okumu W. Francise
• Mark Owino
• Mary Grace Otieno,
• Odhyambo Victorine Orondo

And to all the children, caregivers and LSAs participating in the research