Literature DB >> 27670419

Moving from parent "consultant" to parent "collaborator": one pediatric research team's experience.

Doreen Bartlett1, Lisa A Chiarello2, Tina Hjorngaard3, Barbara Sieck Taylor3.   

Abstract

We share our experiences as academic physical therapists and parents of young people with cerebral palsy working together as a research team, describe and critically review how our working relationship has evolved and propose further enhancements to realize our shared vision. This manuscript is informed by a call for "family-centered research," transcripts of face-to-face meetings held over a period of 11/2 days, the INVOLVE document and our experiences over almost a decade, as well as other related literature. Authentic collaborative research partnerships between academic researchers and parents embodying trust, mutual respect and shared social responsibility take time and effort to develop and sustain. Rehabilitation research is more meaningful and may be more impactful when strong collaborative partnerships between researchers and health service users are in place. Implications for Rehabilitation Involving service users in rehabilitation research is important, but not without challenges. Attaining authentic collaboration requires face-to-face meetings, time, effort, and ongoing open communication. Research processes are superior and outcomes may be improved with service user involvement. Impact of research on rehabilitation practice is anticipated to be more meaningful with service user involvement.

Entities:  

Keywords:  Family-centered research; consumer involvement in research

Mesh:

Year:  2016        PMID: 27670419     DOI: 10.1080/09638288.2016.1219402

Source DB:  PubMed          Journal:  Disabil Rehabil        ISSN: 0963-8288            Impact factor:   3.033


  2 in total

Review 1.  Engaging children and families in pediatric Health Research: a scoping review.

Authors:  Rachel Flynn; Sarah Walton; Shannon D Scott
Journal:  Res Involv Engagem       Date:  2019-11-04

2.  Parental post-traumatic stress, overprotective parenting, and emotional and behavioural problems for children with critical congenital heart disease.

Authors:  Linda G McWhorter; Jennifer Christofferson; Trent Neely; Aimee K Hildenbrand; Melissa A Alderfer; Amy Randall; Anne E Kazak; Erica Sood
Journal:  Cardiol Young       Date:  2021-08-09       Impact factor: 1.023

  2 in total

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