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Insights From Wise Warriors: A Needs Assessment and Preventive Parenting Program Recommendations From Parents of
Isabella J Andrade1, Joanna J Kim1
1Department of Psychology, REACH Institute, Arizona State University, Tempe, AZ, USA.
Insights
Parents of children with spinal muscular atrophy (SMA) need better support. A new parenting program could improve their mental health and caregiving through education and community resources.
Area of Science:
- Neurology
- Pediatrics
- Psychology
Background:
- Spinal muscular atrophy (SMA) is a severe genetic neuromuscular disease impacting infant mortality and child development.
- SMA profoundly affects families, with parents experiencing significant mental health challenges and understudied needs.
- Existing research inadequately addresses the unique experiences and support requirements of parents raising children with SMA.
Purpose of the Study:
- To identify the specific needs and challenges faced by parents of children with SMA.
- To gather parent recommendations for developing a supportive and preventative parenting program.
- To understand how to enhance the well-being and caregiving capacity of SMA-affected families.
Main Methods:
- Conducted semistructured interviews with 32 parents of children with SMA.
- Employed thematic analysis to interpret qualitative data from parent interviews.
- Focused on understanding parent experiences, needs, and suggestions for a parenting program.
Main Results:
- Key parent needs identified include respite care, enhanced access to the SMA community, and support for their own mental health.
- Parents require education for healthcare professionals and desire a program addressing child autonomy, school preparation, and SMA treatment information.
- Participants showed enthusiasm for a preventative parenting program focused on parent well-being and support.
Conclusions:
- Parents of children with SMA have distinct needs that necessitate targeted support systems and programs.
- A comprehensive parenting program should integrate mental health support, community building, and practical guidance for caregiving and child development.
- Addressing these needs can improve overall family well-being and empower parents in managing SMA.
Abstract:
Spinal muscular atrophy (SMA) is a neuromuscular disease that significantly affects children's motor function, including the ability to breathe and swallow, and was the leading genetic cause of infant death until 2016. SMA affects not only children but entire families. SMA parents experience overall poorer mental health compared with parents of children without disabilities, impacting caregiving. However, their experiences and needs remain understudied. This study aimed to identify parent needs and recommendations for a parenting program. Semistructured interviews were conducted with 32 parents and analyzed using thematic analysis. Themes revolved around parent needs including respite care, greater access to the SMA community, own mental health, and education for health care professionals. Parents expressed interest in a parenting program that covered appropriate consequences, guidance on increasing child autonomy, SMA treatment information, and advice on preparing children for school. Qualitative findings highlighted unique parenting experiences and enthusiasm for a preventative parenting program that promotes parent well-being while providing parenting support.
