Isabella Andrade CureSMA Conference 2024 Poster

Invisible Warriors: Mental Health Needs of Parents Raising Children with Neuromuscular Conditions
Isabella J. Andrade, Laney A. Karpel, Arbella S. Kasim, Sun-Kyung Lee, PhD, Vijaya M. Nadiwada-Hofer, BS, Joanna J. Kim, PhD

Abstract

Introduction: Neuromuscular diseases, such as Duchenne Muscular Dystrophy, Spinal Muscular Atrophy, and Mitochondrial Disease, affect approximately 15 million people globally (Deenen, et al., 2015). In addition to physical effects, there is a high prevalence of anxiety and depression among children with neuromuscular diseases (Trimmer et al., 2024; Köbel et al., 2023; Yao et al., 2021). Notably, neuromuscular diseases affect not only children with the diagnosis but their entire family. Specifically, parents of disabled children experience higher levels of stress, greater familial dysfunction, and overall poorer mental health compared to parents with children without disabilities (Scheibner et al., 2023). Yet, most of what is known about the experiences of parents raising a child with a disability is based on the experiences of parents of children with a developmental disorder or intellectual disability such as Autism Spectrum Disorder, Down Syndrome, and Cerebral Palsy (Hameed & Kotian, 2022; Masefield et al. 2020; Schnabel et al. 2019). The experiences of parenting a child with a physical disability or neuromuscular disease are largely unknown. This systematic review aims to 1) identify and synthesize the available evidence on parents’ psychological experience of having a child with a neuromuscular disease and 2) summarize current recommendations for supporting parents of children with a neuromuscular disease.

 Results: Searches were conducted in PsychINFO, PubMed, Medline, and Scopus. Included studies focused on mental health outcomes for parents of children with neuromuscular diseases and were only from peer-reviewed, empirical studies. After screening 1,880 papers, we found 27 papers encompassing 26 distinct studies. Of the included studies, the most frequent neuromuscular diseases were Duchenne Muscular Dystrophy (k = 14), Spinal Muscular Atrophy (k = 9), Mitochondrial Disease (k = 3), Congenital Muscular Dystrophy (k = 2). Within these, 13 other neuromuscular diseases were also mentioned. Results suggest that parenting a child with a neuromuscular disorder is associated with heightened parental (di)stress, caregiver burden, depression and anxiety symptoms, disturbed sleep, and decreased quality of life.

 Conclusions: The present systematic review highlights the mental health needs of parents raising children with neuromuscular diseases. Additionally, included studies suggest that these outcomes can be mitigated through greater access to mental health resources, support groups, skill training, and greater awareness among medical professionals (Rodríguez et al., 2022; Ortega et al., 2022; Yilmaz et al., 2013). Future research is certainly needed to fully encapsulate the range of mental health implications. Finally, with additional infrastructure and funding for evidence-based interventions for parents of children with neuromuscular diseases, we will be much better equipped to meet the needs of these families.

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