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Co-designing complex therapy interventions with parents as partners in the care of children with cerebral palsy: An Experience-based Co-design study in England.
Massey, Jill; Tsianakas, Vicki; Gordon, Anne; Sadler, Natalie; Robert, Glenn.
Affiliation
  • Massey J; Evelina London Children's Hospital, Guys and St Thomas' NHS Foundation Trust, Westminster Bridge Road, London SE1 7EH, UK; Florence Nightingale School of Nursing Midwifery and Palliative Care, James Clerk Maxwell Building, 57 Waterloo Road, London SE1 8WA, UK. Electronic address: jill.massey@kcl.ac.
  • Tsianakas V; Florence Nightingale School of Nursing Midwifery and Palliative Care, James Clerk Maxwell Building, 57 Waterloo Road, London SE1 8WA, UK.
  • Gordon A; Evelina London Children's Hospital, Guys and St Thomas' NHS Foundation Trust, Westminster Bridge Road, London SE1 7EH, UK; Florence Nightingale School of Nursing Midwifery and Palliative Care, James Clerk Maxwell Building, 57 Waterloo Road, London SE1 8WA, UK.
  • Sadler N; Parent expert and service user, Yorkshire, UK.
  • Robert G; Florence Nightingale School of Nursing Midwifery and Palliative Care, James Clerk Maxwell Building, 57 Waterloo Road, London SE1 8WA, UK.
Res Dev Disabil ; 151: 104793, 2024 Aug.
Article in En | MEDLINE | ID: mdl-38924956
ABSTRACT

BACKGROUND:

Parents of children with hemiplegic cerebral palsy are increasingly involved in therapy intervention delivery. Enhancing the ways that parents are supported in delivery is key to optimising outcomes. This study aimed to refine an existing programme in England to better support parents partnering in their child's intervention delivery. METHODS AND PROCEDURES Experience-based Co-design (EBCD) fostered collaboration between parents and therapists to identify shared improvement priorities and develop solutions. The study included eighteen interviews and sixteen co-design meetings involving twenty parents and eight therapists in total. Intervention development followed the MRC Framework for developing and evaluating complex interventions. OUTCOMES AND

RESULTS:

Themes from parent and therapist interviews informed priority setting for the co-design work. Three key shared priorities emerged a) accessing rehabilitation; b) fostering partnership and c) parent learning. Aligned with these priorities, three mixed parent and therapist co-design teams produced a) a parent booklet; an education outline for healthcare professionals; b) partnership principles; adaptations to intervention logbooks c) an online parent education session. CONCLUSIONS AND IMPLICATIONS Engaging parents and therapists in a structured co-design process using EBCD yielded innovative interventions supporting parents in delivering therapy for children with hemiplegia. This collaborative approach is anticipated to enhance programme implementation and effectiveness.
Subject(s)
Key words

Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Parents / Cerebral Palsy Limits: Adult / Child / Child, preschool / Female / Humans / Male Country/Region as subject: Europa Language: En Journal: Res Dev Disabil Journal subject: TRANSTORNOS MENTAIS Year: 2024 Document type: Article Country of publication: United States

Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Parents / Cerebral Palsy Limits: Adult / Child / Child, preschool / Female / Humans / Male Country/Region as subject: Europa Language: En Journal: Res Dev Disabil Journal subject: TRANSTORNOS MENTAIS Year: 2024 Document type: Article Country of publication: United States