“I was worried about not being good enough”. Experiences and perspectives on pregnancy, childbirth and parenthood when living with a neuromuscular disorder – an exploration of everyday life challenges

Abstract

Purpose

The aim of this study was to explore the everyday life experiences and perspectives on challenges related to pregnancy, childbirth and parenthood when living with neuromuscular disorders (NMDs) and identify important elements to take into consideration for parents and their health professionals.

Materials and methods

In all, 27 people (17 with a NMD and 10 partners without a NMD) were included in this study. The participants were all parents or expecting parents. Both mothers and fathers and ambulant and non-ambulant participants were included to broaden the perspective. Three types of semi-structured interviews were applied. The analysis was guided by the Interpretive Description methodology and Antonovsky’s Sense of Coherence theory.

Results

The findings illuminated insights to ongoing challenges in the everyday lives of parents with NMD. Enforced Dilemmas represented guilt and dilemmas on the possibility of passing on the NMD. Reflections on Bodily Ability symbolized the effect that pregnancy and parenthood had on the body. Concept of Normality signified the concerns the parents had about “not being normal enough.” Experience of Dependency addressed being dependent on others and No One to Emulate how the rarity of the NMD made it difficult to find peers or seek advice.

Conclusion

The study emphasizes the importance of the professionals providing counseling and support on pregnancy, childbirth, and parenthood either during consultations, online or in structured professional and peer-support rehabilitation groups for expecting parents or for new parents with a NMD.

IMPLICATIONS FOR REHABILITATION

• Professionals must provide knowledge and counselling on pregnancy, childbirth, and parenthood to support families with NMD who are expecting a child or have already become parents and address the illusion of normal.

• Professional centralized and specialized units where people with NMD can get advice on pregnancy and give birth should be an option.

• Structured professional and peer-support rehabilitation groups (physical meetings or online) on pregnancy, childbirth, and parenthood may be of value for the parents due to the rarity of the diagnosis.

• Online information and knowledge on pregnancy, childbirth, and parenthood and NMD should be widely available.

• Health professionals and peers can help ensure and support an experience of comprehensibility, manageability, and meaningfulness among the parents with NMD and develop rehabilitation services that meet the needs and preferences of people considering getting a child or who are already parents with NMDs or other disabilities.

Keywords:

• Parenthood
• disability
• neuromuscular disorder
• rehabilitation
• interpretive description
• qualitative research

Acknowledgements

We would like to thank all the participants who generously shared both their time and stories and participated in making this study possible. We also want to thank the management at the National Rehabilitation Center for Neuromuscular Diseases for their support of this study.

Disclosure statement

The authors declare no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Author contributions and agreement

All authors have made substantial contributions to all of the following: (1) the conception and design of the study, or acquisition of data, or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, (3) final approval of the version to be submitted.

Additional information

Funding

This work was supported by the National Rehabilitation Center for Neuromuscular Diseases.