Steering towards collaborative assessment: a qualitative study of parents’ experiences of evidence-based assessment practices for their child with cerebral palsy

Abstract

Purpose

To understand parents’ experiences of evidence-based assessment by health professionals for their child with cerebral palsy.

Methods

A qualitative interpretive description study was undertaken. Primary carers of children with cerebral palsy (aged 3–18 years) from south-eastern Australia were invited to participate. Face-to-face interviews were held using a semi-structured topic guide and data analyzed inductively. Credibility was ensured through: journal reflections; co-author review; audit trail; and, participant member-checking.

Results

Fourteen parents of children with cerebral palsy, representing Gross Motor Functional Classification System levels I–V, participated. Six themes emerged: (1) Protection; (2) Positively Framed; (3) Bridging the Gap; (4) Involvement; (5) Finding Worth; and (6) Trust. Central to parents’ experience was protection of their child’s identity and personal self. Assessment can be emotionally confronting, at any stage. Representing the child positively and highlighting possibilities was deemed essential. Parents’ involvement ranged from being overlooked spectators to being instigators of assessment. Evidence-based assessment was worthwhile when relevant to parents’ direction and family context. The researchers’ interpretive description generated a schema and metaphor—the Steering Wheel for Collaborative Assessment.

Conclusions

A strengths-based approach to diagnosis and assessment is essential. The resulting interpretive description may assist health professionals align evidence-based assessment practices with family-centred care.

Implications for rehabilitation

• Parents of children who have cerebral palsy describe having to protect their child’s identity and representation, and their own personal well-being, through evidence-based assessment and diagnostic processes.

• Involving parents in the process of evidence-based assessment and adopting a strengths-based approach is essential.

• The interpretive description developed—the Steering Wheel for Collaborative Assessment—may assist health professionals to implement evidence-based assessment tools in ways consistent with family-centred care principles.

Keywords:

• Parents
• assessment
• involvement
• family-centred care
• evidence-based practice
• cerebral palsy

Acknowledgements

We sincerely thank the parents who willingly provided their time and trust to share their personal reflections and stories for this study to benefit others. The authors also appreciate the assistance from Paula O’Hagan with graphic design and Joan Gains and Vicki Cavalieros with recruitment, and the generosity of individual therapists and staff from organizations, who cannot be listed here to protect confidentiality of the participants.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

Financial support for transcription costs was provided through the FRSSS fund Australian Catholic University, Melbourne Australia. No other financial support was received in the authorship or publication.