Literature DB >> 27766678

Improving participation outcomes and interventions in neurodisability: co-designing future research.

J McAnuff1,2, R Brooks3, C Duff2, M Quinn4, J Marshall5, N Kolehmainen1,5.   

Abstract

There is an urgent, agreed need to improve participation outcomes and interventions for children and young people with neurodisability. We worked together with service users and providers to design research into participation outcomes and interventions in neurodisability. We built on existing evidence about participation outcomes and interventions and the WHO International Classification of Functioning, Disability and Health. We: (1) specified seven participation outcome categories for measurement; (2) prioritized these for improvement: self-care, friends and social, and physical activity ranked the highest; (3) identified 11 potential intervention categories for targeting the top priority, self-care, through eight hypothesized change mechanisms and agreed for the interventions to be delivered as a 'Menu of Interventions' for personalized self-care support; and (4) designed a before-and-after mixed methods feasibility study to evaluate the Menu with children and young people (0-12 years) and their parents and therapists.
© 2016 John Wiley & Sons Ltd.

Entities:  

Keywords:  participation; patient and public involvement; self-care; user involvement

Mesh:

Year:  2016        PMID: 27766678     DOI: 10.1111/cch.12414

Source DB:  PubMed          Journal:  Child Care Health Dev        ISSN: 0305-1862            Impact factor:   2.508


  7 in total

1.  Developing the FEEDS toolkit of parent-delivered interventions for eating, drinking and swallowing difficulties in young children with neurodisability: findings from a Delphi survey and stakeholder consultation workshops.

Authors:  Helen Taylor; Lindsay Pennington; Christopher Morris; Dawn Craig; Helen McConachie; Jill Cadwgan; Diane Sellers; Morag Andrew; Johanna Smith; Deborah Garland; Elaine McColl; Charlotte Buswell; Julian Thomas; Allan Colver; Jeremy Parr
Journal:  BMJ Paediatr Open       Date:  2022-04

2.  Patient involvement in cardiovascular research: a qualitative impact evaluation.

Authors:  Eva Vroonland; Inge Schalkers; Daphne Bloemkolk; Christine Dedding
Journal:  Res Involv Engagem       Date:  2019-10-14

3.  Development of a Digital Decision Support Tool to Aid Participation of Children With Disabilities in Pediatric Rehabilitation Services: Explorative Qualitative Study.

Authors:  Elin Vinblad; Ingrid Larsson; Maria Lönn; Emma Olsson; Jens M Nygren; Petra Svedberg
Journal:  JMIR Form Res       Date:  2019-10-02

Review 4.  Co-Production within Child and Adolescent Mental Health: A Systematic Review.

Authors:  Michael John Norton
Journal:  Int J Environ Res Public Health       Date:  2021-11-12       Impact factor: 3.390

5.  Involving and engaging pregnant women in maternity-related research: reflections on an innovative approach.

Authors:  Laura Goodwin; Magdalena Skrybant; Sara Kenyon
Journal:  Res Involv Engagem       Date:  2021-12-16

Review 6.  Patient and Public Involvement of young people with a chronic condition in projects in health and social care: A scoping review.

Authors:  Femke van Schelven; Hennie Boeije; Veerle Mariën; Jany Rademakers
Journal:  Health Expect       Date:  2020-05-05       Impact factor: 3.377

7.  Using qualitative research perspectives to inform patient engagement in research.

Authors:  Michelle Phoenix; Tram Nguyen; Stephen J Gentles; Sandra VanderKaay; Andrea Cross; Linda Nguyen
Journal:  Res Involv Engagem       Date:  2018-07-06
  7 in total

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