Parents’ experiences of formal assessment for their child with cerebral palsy- a qualitative study.

Ms Bridget O’Connor1, Dr Christine Imms1, Dr Claire Kerr2, Dr Nora Shields3, Dr Brooke Adair

1School of Allied Health,  Australian Catholic University, Albury, Australia, 2School of Nursing and Midwifery, Queen’s University Belfast, Belfast,  UK, 3School of Allied Health, La Trobe University, La Trobe University, Australia

Abstract:

Aim:
Allied health practitioners question the compatibility of evidence-based assessments and family-centred care. This study aimed to explore parents’ experiences of evidence-based assessments for their child with cerebral palsy.

Method:
A qualitative study using Interpretive description was undertaken. Primary carers of children with cerebral palsy (aged 3-18 years) were purposively sampled. Face-to-face interviews were conducted, audio-taped and transcribed. Data were analysed to yield a conceptual description of parents’ experience of assessment. Credibility was ensured through: journal reflections; co-author reviews; audit trail; and participant member-checking of the final conceptual description.

Results:
Six themes emerged from interviews with 14 primary carers: (1) Protection; (2) Framing assessment positively; (3) Bridging the Gap; (4) Involvement; (5) Finding Worth; and (6) Trust. Central to parents’ experience of assessment was protection of child identity and personal self. Formal assessment was motivating and informative but also confronting and persistently challenging for parents. Framing assessment and diagnosis positively was deemed essential. Parents’ involvement ranged from being overlooked to being instigators of assessment. Assessments were ‘worth it’ only when relevant to parents’ current focus and outcomes were transferable to the family context. Trust was built on familiarity, openness, and a sense of being in good hands. Further analysis generated a descriptive metaphor and schema – The Steering Wheel for collaborative assessment.

Significance of the findings to allied health:S

The Steering Wheel provides a conceptual model to help guide clinicians, parents, researchers, tool developers and educators towards more collaborative assessment practices aligned with family-centred care.

Biography:

Bridget O’Connor is a part-time PhD candidate through Australian Catholic University. She works clinically as a physiotherapist in community paediatrics with Albury Wodonga Health. She is committed to enhancing regional allied health practices for children and families. Her doctoral programme is an investigation of allied health practitioners’ use of robust assessments for children with cerebral palsy. She will present the findings from her current study that aims to understand parents’ experiences of assessment of their child with cerebral palsy.