Objective
The objective was to gain an understanding of the interventions offered through NHS services to parents of children with neurodisability who experience EDSD by consulting with parents and HPs to inform the development of a national survey of current practice.
Methods
Participant recruitment and selection
We aimed to recruit parents of young children with physical or mixed EDSD, parents of young children with non-physical EDSD and HPs working with young children with physical, mixed and non-physical EDSD in the north-east of England. Parents were recruited via invitations sent through social media, newsletters of local parent organisations, local specialist schools and charities. We recruited HPs working with children with neurodisability and EDSD via e-mails sent to regional professional networks in the north-east of England, including the Speech and Language Paediatric Dysphagia Clinical Excellence Network and the regional British Academy of Childhood Disability regional clinical network.
Procedure
Invitations about the focus groups contained e-mail contact details for the study team and a link to an information sheet. Parents who contacted the research team and expressed an interest in taking part provided information on the age of their child and the nature of their EDSD (i.e. whether these were physical, non-physical or mixed difficulties) and the geographical area in which they lived (e.g. Newcastle, County Durham) to ensure some variation in family experiences of EDSD and service provision. HPs provided information about the geographical area in which they worked, their professional group and the type of service they provided (e.g. community-based service or assessment service).
We held four stakeholder focus groups: two with parents and two with HPs. Parents of children with physical EDSD and parents of children with non-physical EDSD attended different groups. The HP groups included professionals working with children with any EDSD and were held outside working hours. All groups took place in February 2018 in the north-east of England. Participants provided written consent. Parents and HPs attending the sessions received a £50 shopping voucher to thank them for their time and to cover any travel costs.
All focus groups followed a similar format. Three of the research team attended each group: one or both of the parent investigators (DG and JS), Helen Taylor and Jeremy Parr, Julian Thomas or Lindsay Pennington. Helen Taylor led all four group discussions; other members of the research team asked supplementary questions or provided clarification. We asked each group about their experience of interventions for EDSD: who introduced them, where they were used, their perceived effectiveness and acceptability; how the success of interventions is or could be evaluated; and which measurement tools (if any) were used (see Appendix 6 for the focus group topic guide).
All recordings of focus group discussions were transcribed verbatim. Two investigators (LP and HT) read the transcripts repeatedly to identify all of the interventions, outcomes and measures discussed. Definitions of interventions and outcomes were taken from the systematic and mapping reviews. Any new interventions and outcomes identified by Helen Taylor and Lindsay Pennington were discussed by the research team to ensure mutual exclusivity (Tables 17 and 18). Following content analysis principles, we extracted excerpts of coded text from each focus group transcript into a matrix to chart the interventions and measures and who prescribed and used them.63 We also charted participants’ reports of acceptability/effects of interventions and the importance of individual outcomes in the matrix. As the aim was to identify the range of interventions, outcomes and measures used, rather than the frequency of their use or strength of feeling about the features of EDSD management, we did not count the number of times each intervention/measure appeared in the transcripts.
Results
Participants
The characteristics of those who participated in the first round of focus groups are shown in . Seven parents participated, two of whom had a child with physical EDSD and five of whom had a child with non-physical EDSD; the age of the children ranged from 6 to 18 years. A parent of children with physical EDSD agreed to take part but was unable to attend on the day of the focus group. Six HPs took part (five speech and language therapists and one dietitian). Another speech and language therapist agreed to take part in the first focus group but was unable to attend on the day of the group, nor could they attend the second focus group. Parents resided in several areas across the north-east of England and received services from a number of NHS trusts. HPs worked in a range of NHS trusts in north-east England.
Characteristics of participants who attended the first round of focus groups
Interventions, outcomes and measures used by parents and health professionals
Parents reported that they currently used or had used a wide range of interventions, often in combination. Similarly, HPs reported that they or their colleagues recommended use of a range of interventions, sometimes simultaneously or in an additive approach (Box 5). Parents and HPs discussed the potentially stressful experience of mealtimes, and the importance of understanding the nature of both the children’s difficulties and their communication skills to implement any changes at mealtimes. Parents also stressed the variability in children’s eating and drinking from day to day. Both parents and HPs reported that children’s physical health and developmental progress were important outcomes of EDSD interventions, but also highlighted the social nature of mealtimes and outcomes related to enjoyment of food and eating with others. Although participants identified a substantial list of individual areas in which to measure progress or outcome, few participants reported a formal measurement that was used to evaluate progress. Tools that were mentioned were food diaries, weight, number of spoonfuls eaten in a meal and Therapy Outcome Measures (TOMs),64 which includes a Dysphagia scale.
Interventions and outcomes reported in the first focus group
Summary of findings
Parents and HPs reported using a wide range of interventions to enable children to use their current skills to eat and drink safely, or to teach new skills. They often used interventions in combination. They viewed children’s physical health and developmental progress, children’s enjoyment of meals and participation in meals as social activities as outcomes to target through intervention. HPs seldom used formal outcome measures to evaluate intervention success.
Strengths and limitations of the first round of focus groups
The first round of focus groups comprised a small sample of parents and HPs from one region of England served by numerous secondary-level services and one tertiary-level service. In the small sample, most of the parents had children with non-physical EDSD. The sample and the service organisations may not be representative of families receiving EDSD services or service providers across the UK. The children of some parents included in the groups were older than the target age range of the study. This meant that parents were recalling previous interventions and outcomes. However, their children had ongoing EDSD and parents were able to recall differences in interventions by school age, for example preschool and primary school, which was important for our study. The small size of the groups meant that there was time for all participants to relate their experiences.
Patient and public involvement in the first focus groups
The parent co-investigators recommended that separate groups be held for parents of children with physical or mixed EDSD and for parents of children with non-physical EDSD, as similar shared experiences may help the groups to gel and encourage discussion. The parent co-investigators reviewed the topic guide and agreed that the questions should initially be open, without examples of interventions and outcomes. The PAG reviewed the summary lists of the interventions and outcomes reported in the focus groups. They agreed that each intervention and outcome identified should be included in the survey.
How did the first focus groups inform the next step?
Parent and HPs in the focus groups endorsed all of the interventions and outcomes identified in the reviews; therefore, all were included in the national survey of UK parents’ and HPs’ use of EDSD interventions and evaluation of their outcomes (see Chapter 7).
