Therapy interventions for children with neurodisabilities: a qualitative scoping study.

BACKGROUND: Therapy interventions emerged four times in the top 10 research priorities in a James Lind Alliance research prioritisation exercise for children with neurodisabilities (Morris C, Simkiss D, Busk M, Morris M, Allard A, Denness J, et al. Setting research priorities to improve the health of children and young people with neurodisability: a British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership. BMJ Open 2015; 5 :e006233). The National Institute for Health Research (NIHR) commissioned this study as part of an information-gathering exercise in response to this.

OBJECTIVES: The objectives were to (1) describe the current practice, approaches and schools of thought in relation to physiotherapy, occupational therapy and speech and language therapy for children with neurodisability; (2) explore clinical decision-making; (3) investigate views on outcomes and their measurement, particularly participation as an outcome, that is, the child's ability to have the opportunity to be involved in life situations and activities (e.g. communication, mobility, interpersonal interactions, self-care, learning and applying knowledge); (4) seek views on the aspects of therapy interventions that have an impact on outcomes; and (5) elicit stakeholder views on research needs and priorities.

DESIGN, SETTING AND PARTICIPANTS: More than 70 professionals (therapists, service leads, paediatricians and education staff) and 25 parents participated in a qualitative interview (either individually or as part of a focus group).

RESULTS: Professional thinking and models of service delivery are in a state of flux and development. There is a move towards goals-focused, family-centred approaches. Work tends to be highly individualised, with few protocols. Parents are certain of the value of therapies, although they may experience difficulties with provision and may seek (additional) private provision. Therapy interventions are conceived as three components: the therapist, the procedures/equipment, etc., and the wider therapeutic environment. They are believed to be highly complex and poorly understood. Although participation is widely endorsed as a core intervention objective of therapy interventions, its suitability, or appropriateness, as an outcome measure was questioned. Other child and/or parent outcomes were identified as more or equally important. Notions of intermediate outcomes - in terms of body structure/function, and the achievement of activities - were regarded as important and not counter to participation-focused approaches. Among therapists, research on intervention effectiveness was (cautiously) welcomed. A number of methodological challenges were identified. A portfolio of study designs - quantitative and qualitative, experimental and observational - was called for, and which included economic evaluation and clear pathways to impact.

LIMITATIONS: The study was not successful in recruiting children and young people. Further work is required to elucidate the views of this key stakeholder group.

CONCLUSIONS: Therapy interventions are poorly understood. There was strong support, tempered a little by concerns among some about the feasibility of demonstrating impact, for investment in research.

FUTURE WORK: The identification of research priorities was a core study objective, and a wide-ranging research agenda was identified. It included 'foundational' research into neurodisability, the active components of therapy interventions and the concept of participation. Three areas of evaluation were identified: overall approaches to therapy, service organisation and delivery issues, and the evaluation of specific techniques. Parents regarded evaluations of approaches to therapy (e.g. goals-focused; supporting family-self management) as priorities, along with evaluations of models of service provision. Professionals' views were broadly similar, with an additional emphasis on methodological research. In terms of specific techniques, there was no shared agreement regarding priorities, with views informed by personal interests and experiences.

FUNDING: The NIHR Health Technology Assessment programme.