Parents of children with SMA report gaps in caregiving support
Study finds unmet needs and interest in tailored parenting program
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- Parents of children with SMA reported significant unmet needs, including respite care, mental health support, and community connection.
- They reported high levels of stress, anxiety, depression, and caregiver burden, underscoring the need for more support.
- Most parents were interested in a tailored parenting program to help them better care for their children and themselves.
Parents of children and young adults with spinal muscular atrophy (SMA) reported significant unmet needs, including respite care, mental health support, and community connection, according to an interview study.
Three-quarters of the parents also expressed interest in developing a tailored parenting program to help them better care for their children and themselves.
“This study is a critical early step toward understanding and addressing the needs and experiences of parents raising children with SMA,” the researchers wrote.
Study explores needs tied to raising children with SMA
The study, “Insights From Wise Warriors: A Needs Assessment and Preventive Parenting Program Recommendations From Parents of Children With Spinal Muscular Atrophy,” was published in the Journal of Child Neurology.
SMA is a neuromuscular disease that affects a person’s ability to walk, swallow, and breathe. While it does not affect cognitive abilities, people with SMA can experience higher rates of mental health challenges, including anxiety and depression.
Parents of children with SMA also experience higher stress, anxiety, depression, and caregiver burden compared with parents of children without disabilities. Despite this, there are currently no evidence-based parenting programs designed specifically for this population.
This study, by researchers at Arizona State University, aimed to identify what parents of children with SMA actually need and what they would want included in a future parenting program.
The team conducted interviews with 32 parents from 30 families. Most participants were women (84.4%), white (90.6%), and had earned a university degree (90.7%). Their children ranged in age from about 5 months to 24 years. About half the children with SMA (51.4%) had SMA type 1, 37.1% had type 2, and 8.6% had type 3.
Respite care topped list of parents’ unmet needs
In interviews, nearly all parents (96.9%) reported at least one unmet need related to SMA; the most common was respite care (53.1%), which refers to temporary relief from caregiving duties. Parents described difficulty finding caregivers with the specialized knowledge needed to care for a child with SMA-related medical needs, as well as challenges related to cost and availability.
Half of parents reported wanting greater access to the broader SMA community, noting that connecting with other SMA families was one of their most important sources of information and support. As one parent said, “I only met another parent with an SMA kiddo this year for the first time … I love seeing experiences, seeing what is working for other people, what isn’t working for other people.”
Almost half of parents (46.9%) expressed a need for better mental health resources for themselves and specifically asked that any mental health services be adapted to the experience of raising a child with a disability. As one parent noted, “I’ve had counselors that have never had children or just don’t have any of that like disability sense.”
A similar proportion (43.8%) reported frustration with the level of SMA knowledge among healthcare professionals, including nurses, neurologists, and paramedics. One parent described having to remind hospital staff about SMA treatments, saying the staff “didn’t know what I was talking about.”
Most parents supported SMA-specific parenting program
Financial strain was also common, with 37.5% of parents reporting significant expenses related to medical appointments, adaptive equipment, and wheelchair-accessible transportation that were not adequately covered by government programs.
Most parents (75%) expressed a strong interest in a parenting program specifically designed for SMA families. More than two-thirds (68.8%) said early intervention, starting during infancy or toddlerhood, would be most beneficial. Among the most requested topics, almost two-thirds of parents (62.5%) wanted guidance on helping their children develop independence and self-advocacy skills.
A parent explained, “I would say advocating—navigating school, navigating friends, navigating sleepovers. . . . How can I teach my kids’ best friends how to incorporate him more and become more independent in life?”
Parents also wanted help with giving appropriate consequences without restricting their child’s use of assistive devices, with one father asking, “If she’s goofing around with her communication device, I can’t take that away because that feels icky and wrong, but she’s also misusing it. How do I navigate that?”
Practical guidance also ranked high on wish list
Other frequently requested program topics included SMA treatment information and mental health support for parents (34.4% each). Guidance on preparing for school, including how to set up individualized education programs (25%), and advice on balancing encouragement with understanding a child’s physical limitations (12.5%) were also requested.
Some parents also mentioned the need to include support for unaffected siblings, described by one mother as “the forgotten ones, unfortunately. They’re the ones that always have to go with the flow and have a lot of disappointments.” Half of parents specifically mentioned peer mentorship as a valued component of any future program.
“This study highlights significant needs expressed by parents of children with SMA,” the researchers concluded. “The findings emphasize the need for additional resources for parents to better support their needs so they can effectively raise their children with SMA.”
“Findings also suggest that a tailored parenting program may benefit the SMA community; however, future research is needed to fully understand if there is a need and potential intervention targets,” the team added.
