Being the parent of a child with limb difference who has been provided with an artificial limb: an interpretative phenomenological analysis

Abstract

Purpose: Rehabilitative care for children with limb difference often includes the provision and use of an artificial (or prosthetic) limb. Of key influence in this process is how parents experience and respond to their child’s limb difference and prosthesis use. However, research on this is lacking. Therefore, this study aimed to explore the experiences of parenting a child with limb difference who had been provided with an artificial limb.

Design: Semi-structured interviews took place with seven parents. Interview data was recorded, transcribed and analyzed using interpretative phenomenological analysis.

Results: The analysis identified four themes: (1) managing the initial emotional experience through the development of coping resources; (2) opportunities through prosthesis use and its relationship with “normality”; (3) managing and making sense of social reactions toward their child; (4) the intrinsic role of support: developing a collective connection and enabling shared knowledge.

Conclusions: The study highlighted salient aspects to parents’ experiences and sense-making that can inform clinical support. Emotional support, the management of social responses, and the holistic co-ordination of healthcare support with peer support networks are discussed. Healthcare professionals involved in the prosthetic rehabilitation process should look to explore these meanings to help support the management of the child’s prosthesis use.

Implications for rehabilitation

• Understanding the sense-making of parents is important in effective service provision for children with limb difference.

• Service provision for children with limb difference should consider the support needs of parents.

• Working with limb difference charities and voluntary organizations could help services develop needed parent-to-parent support networks.

Keywords:

• Artificial limb
• child
• limb difference
• parenting
• prosthesis

Acknowledgments

We would like to thank all the participants who so generously gave their time and shared their experiences.

Disclosure statement

No potential conflict of interest was reported by the authors.