How do parents frame their engagement experience in early intervention? A grounded theory study

Abstract

Purpose

Parent and therapist engagement and partnership are critical in early intervention physiotherapy and occupational therapy for infants with cerebral palsy to improve outcomes. The main aim of this study was to understand how parents perceive their engagement experience in early intervention over time.

Methods

Grounded theory methodology was used. Twenty parents of diverse backgrounds participated in 22 interviews (including some repeated longitudinally) to reflect on their engagement experience within the context of early intervention community services provided in the UK NHS.

Results

The findings highlight how parents’ perspectives of their engagement in EI change according to critical circumstances, including their preceding neonatal trauma, the at-risk CP label, firmer diagnosis of CP and their child’s response to intervention. We theorise that this disrupted transition experience to parenthood becomes part of parental framing (or sense-making) of their engagement in EI. Overlapping frames of uncertainty, pursuit and transformation capture and explain nuances in parents’ engagement patterns within EI over time.

Conclusion

This theorising has implications for early intervention therapists in how they engage in the lives of families and partner with parents to support healthier parental transition, wellbeing and subsequent improved infant outcomes.

IMPLICATIONS FOR REHABILITATION

• New insights are provided into how recent advances to prognostic practices for infants with cerebral palsy affect parental perspectives and their engagement experience in early intervention

• The paper’s organising concepts support a clearer understanding for early intervention practitioners of this complex parent experience

• Early intervention practitioners are encouraged to reflect upon their practice as they engage in families’ lives and partner with parents during this challenging period to optimise outcomes

Keywords:

• Early intervention
• parental involvement
• infants
• cerebral palsy
• physical therapy

Acknowledgements

The authors thank all of the parent participants, the parent advisory group and local collaborators for their generous contributions to the completion of this study. The authors also acknowledge the peer reviewers for their input into the development of the final paper.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This study is funded by the National Institute for Health Research, Integrated Clinical Academic Programme – Clinical Doctoral Research Fellowship; funders ref no. ICA-CDRF-2017-03-046. This work is supported by the Centre for Outcomes and Experience Research in Children’s Health, Illness and Disability (ORCHID) and NIHR GOSH BRC. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.