The impact of autism in the Somali community in Bristol

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Summary of report content

Autism Independence and Healthwatch Bristol engaged with Somali families affected by autism to find out their experiences of using health services and their understanding of the condition. Engagement built on research carried out by Bristol University, NIHR CLAHRC West and Autism Independence in 2015-2016. This work aimed to find out whether Somali families access adequate support from mainstream health and social care services and whether they face particular barriers in accessing care in Bristol. It aimed to find out what Somali families feel could be improved in terms of meeting the needs of their child/young person with autism and what might help their family holistically. The data was gathered using mixed methods and produced both quantitative and qualitative data. This involved using a structured survey questionnaire with 7 open and closed questions and 8 general demographic questions. Each questionnaire took 20-30 minutes to complete due to interpreting time. Autism Independence and Healthwatch Bristol consulted with 56 families. Of these, 50 (n=50) families took part and the other 6 families decided not to take part. The 6 families who did not take part had children who were newly diagnosed with autism. 51 out of the 56 families who took part are members of Autism Independence. 48 surveys were completed face to face and the other 2 were completed alone by participants. 49 female participants took part in the survey and one male. 49 families had a child/ren with diagnoses of autism and 1 family was in the process of getting an assessment. The 50 families they consulted had 51 children with diagnoses of autism and 4 children in the process of getting a diagnosis. The main finding of the report, identified 40% of families that were spoke with said that they still do not understand what autism is. 8% of respondents thought autism is an illness or a mental illness and 10% thought autism meant being different or having language needs or problems. Overall, 58% of the families we spoke with did not have a clear understanding of the condition. This report found that the biggest problem for families was the lack of understanding, and this lack of understanding led on to other barriers in the development of their child, resulting severely autistic children costing society in general a fortune in the longer term. The report identified 6 recommendations which are documented within the report. There is no response from the provider within the report.

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General details

Report title 
The impact of autism in the Somali community in Bristol
Local Healthwatch 
Healthwatch Bristol
Date of publication 
Tuesday, 20 June, 2017
Date evidence capture began 
Tuesday, 20 June, 2017
Date evidence capture finished 
Tuesday, 20 June, 2017
Type of report 
Report
Key themes 
Health inequalities
Quality of care
Support
Healthwatch reference number 
Rep-1346

Methodology and approach

Was the work undertaken at the request of another organisation? 
No
What type of organisation requested the work 
N/A
If this work has been done in partnership, who is the partner? 
Autism Independence
Primary research method used 
Engagement event
Survey
How was the information collected? 
Consultation Responses
If an Enter and View methodology was applied, was the visit announced or unannounced? 
N/A

Details of health and care services included in the report

Mental health services 
Child and adolescent mental health services (CAMHS)

Details of people who shared their views

Number of people who shared their views 
50
Age group 
Not known
Gender 
Not known
Ethnicity 
Not known
Sexual orientation 
Not known
Does the information include public's views? 
Yes
Does the information include carer's, friend's or relative's views? 
No
Does the information include staff's views? 
No
Does the information include other people's views? 
Yes
What was the main sentiment of the people who shared their views? 
Negative

Outcomes and impact

Were recommendations made by local Healthwatch in the report? 
Yes
Does the information contain a response from a provider? 
No
Is there evidence of impact in the report? 
Yes
Is there evidence of impact external to the report? 
No
What type of impact was determined? 
Implied Impact

Network Impact
Relationships that exist locally, regionally, nationally have benefited from the work undertaken in the report
 
Implied Impact
Where it is implied that change may occur in the future as a result of Healthwatch work. This can be implied in a provider  response, press release or other source. Implied impact can become tangible impact once change has occurred.
 
Tangible Impact
There is evidence of change that can be directly attributed to Healthwatch work undertaken in the report.