Objective
The objective was to establish which of the outcomes of interventions for EDSD that were identified as important by parents and professionals were most meaningful to young people with neurodisability.
Methods
Two focus groups with young people with neurodisability who had EDSD, or had EDSD previously, were conducted. There was one focus group for young people with physical or mixed EDSD and one focus group for young people with non-physical EDSD.
Participant recruitment and selection
For focus group 1, seven young people with physical EDSD who were cognitively able to participate in the focus group were identified by a senior member of their local speech and language therapy team. Invitation letters were sent out to parents, followed by a telephone call to non-respondent parents to ascertain their willingness to participate. A familiar communication partner for each young person was also invited to attend the group.
For focus group 2, the focus group was advertised via a social group for young people with autism. Individuals who were aged 12–16 years with non-physical EDSD were invited to attend. The leader of the social group confirmed that participants were cognitively able to participate in the focus group. Each young person was accompanied by a parent.
Parental informed consent and participant assent was obtained for participants aged < 16 years. Informed consent was obtained from participants aged ≥ 16 years.
Procedure
The procedure for both focus groups was identical. One member of the research team (MA) led a 1-hour workshop in a room familiar to the participants. She presented images representing the outcomes identified as essential in the Delphi survey, printed on A4 paper. shows an example.
Morag Andrew presented two practice examples (friends and screen time) before the proposed outcome images; young people confirmed that they understood the process. Along with each of the outcome images, Morag Andrew provided an explanation of each of the nine outcomes (outcomes were described rather than named); Parent mental health was not considered appropriate to be discussed. One outcome at a time, Morag Andrew gave individual participants A5 images that matched each A4 outcome image. She placed three large A1 poster sheets headed ‘Very important’, ‘In the middle’ and ‘Less important’ on the wall in clear view of the participants. Morag Andrew repeated the description of the outcome, then asked the participants, in turn, to indicate whether they considered the outcome ‘Very important’, ‘In the middle’ or ‘Less important’. Morag Andrew presented the outcomes in the following order, using the given descriptor:
Growth – ‘a change in a child’s growth, including how much they weigh/how heavy they are and how tall they are’.
Health – ‘children are more healthy, feel ill less often’.
Safety – ‘children are able to eat and drink without choking or food going down the wrong way’.
Nutrition – ‘making sure that the foods children eat can give them enough energy and vitamins so that children can grow and stay healthy’.
Oral motor control – ‘children are able to control the movement of the mouth, jaw, tongue or lips, and swallow’.
Parental understanding of EDSD – ‘parents’ understanding of why eating and drinking may be hard for their child’.
Enjoyment of mealtimes – ‘child’s enjoyment of mealtimes at home and school’.
Quality of life of young person – ‘how happy a child is with their life’.
Quality of life of family – ‘how happy other members of the family are with their lives’.
Once each outcome had been assigned to an importance category, Morag Andrew took the poster sheets down and replaced them with new poster sheets entitled ‘Most important’ and ‘Very important’. Morag Andrew displayed all of the outcomes previously identified by participants as ‘Very important’ on the relevant poster sheet. She then asked participants to consider which of the ‘Very important’ outcomes were ‘Most important’. Morag Andrew moved the A5 images of the outcomes selected as ‘Most important’ to the ‘Most important’ poster sheet. She audio-recorded the focus groups and photographed the poster sheets so that the information collected could be checked or verified. Participants received a £50 shopping voucher as a thank you for their contribution.
Results
In focus group 1, four female participants aged 14, 15, 16 and 18 years agreed to participate. Three of the participants used Voice Output Communication Aid communication systems and one participant used verbal communication. All of the participants were supported by a familiar communication partner. Three of the participants regularly participated in small group work together. All participants had physical EDSD; none had mixed EDSD. All four young people had EDSD and fed orally; two participants had enteral feeding tubes to support intake but maintained partial oral feeding. All participants had current EDSD.
In focus group 2, six young people with autism and non-physical EDSD agreed to take part: four males and two females aged 12–15 years. Two participants also had selective mutism and gave their responses by writing on individual white boards. All young people had or previously had non-physical EDSD; none had mixed EDSD. All participants fed orally, without enteral feeding tube support. All participants were recruited on the criterion of recent or current EDSD, but we did not receive information on the current EDSD status.
shows how young people from the focus groups rated outcome importance.
Importance of outcomes to young people with physical EDSD and non-physical EDSD
Young people with physical EDSD unanimously agreed that Safety was the ‘Most important’ outcome, closely followed by Nutrition. Participants also selected Oral motor control, Quality of life of young person and Health as being additional ‘Most important’ outcomes, in the order given. One young person with non-physical EDSD chose not to rate the most important outcome. The remaining five young people with non-physical EDSD selected Quality of life of young person (n = 2), Safety (n = 2) and Health (n = 1) as the ‘Most important’ outcomes.
Summary of the young people’s focus groups
For young people with physical EDSD, Safety and Nutrition were the most important outcomes. For young people with non-physical EDSD, Quality of life of the young person, Safety and Health were the most important outcomes.
Strengths and limitations of the young people’s focus groups
The inclusion of young people with physical and non-physical EDSD was a strength of the focus groups. Insufficient time to fully explore the rationale driving participant outcome selection was a limitation. The age range of the two focus groups differed slightly: participants in focus group 1 were slightly older than participants in focus group 2, which may have affected participant responses. Focus group 1 comprised females only; sex may have contributed to the responses obtained. The young people’s focus groups were all held in north-east England; additional data from focus groups in other regions of England would be valuable to establish any differences of opinion of young people living in socially and economically diverse areas of the country.
Patient and public involvement in young people’s focus groups
The parent co-investigators helped liaise with schools and local community support groups to recruit the young people.
How did the young people’s focus groups inform the next study stage?
The ratings of the importance of outcomes from the young people’s focus groups were considered by the research team alongside the information gathered in the stakeholder consultation workshops (see Chapter 11), and informed the recommendations of future research and trial design.
