How Parents of Children With Muscular Dystrophy Cope May Shape Their Mental Health

Raising a child with Duchenne muscular dystrophy places parents on an emotional tightrope that few outside the rare-disease community fully appreciate. DMD is a severe, progressive genetic muscle disorder that primarily affects boys, gradually robbing them of the ability to walk, and eventually compromising heart and respiratory function. For mothers and fathers, the diagnosis is not a single devastating moment but the beginning of a decades-long journey of caregiving, medical appointments, and anticipatory grief. A new cross-sectional study published in BMC Psychology now offers a data-driven look at what protects, and what erodes, the mental health of these parents, and its findings carry practical weight for clinicians designing psychosocial support services.

The research team, led by Başak Çağla Arslan of Lokman Hekim University in Ankara, Türkiye, together with colleagues from Hacettepe University, Lokman Hekim University, and Yüksek İhtisas University, set out to examine how coping styles and perceived social support relate to psychiatric symptoms in parents of children with DMD. Rather than treating caregiver distress as an inevitable consequence of the disease, the authors investigated the psychological machinery that shapes it: the habitual strategies people use when facing stress, and the subjective sense that others are there for them when things fall apart.

Methodologically, the study took the form of a descriptive, exploratory, cross-sectional survey distributed online. Parents completed a demographic information form along with three validated instruments: the Stress Coping Styles Scale, which distinguishes adaptive patterns such as optimistic and self-confident coping from maladaptive ones such as helpless and submissive approaches; the Multidimensional Scale of Perceived Social Support, which measures perceived support separately from family, friends, and significant others; and the Brief Symptom Inventory, a screening tool capturing dimensions including anxiety, depression, somatization, hostility, and negative self-concept. In total, 139 parents participated, comprising 105 mothers and 34 fathers, with a mean age of 37.8 years and a standard deviation of 7.05. The imbalance between mothers and fathers is itself telling, reflecting the reality that caregiving burdens in many families fall disproportionately on women.

The correlational results paint a consistent picture. Optimistic coping, the tendency to approach stress with a hopeful, constructive outlook, was negatively correlated with anxiety (r = −.427), depression (r = −.370), negative self-concept (r = −.410), somatization (r = −.339), and hostility (r = −.428). In other words, parents who characteristically sought out positive ways of managing strain reported systematically fewer symptoms across the psychiatric spectrum. Helpless coping, by contrast, showed positive correlations with anxiety (r = .313), depression (r = .388), and negative self-concept (r = .327), suggesting that resignation in the face of a relentless illness goes hand in hand with internalizing distress.

Social support emerged as a second, complementary pillar. Higher perceived support from friends and significant others was associated with lower anxiety scores, while optimistic coping was itself positively associated with perceived support from family, friends, and significant others. This interconnection is not accidental, the authors suggest. Parents who face adversity with optimism may find it easier to maintain relationships, ask for help, and sustain the social networks that then buffer them against psychological deterioration. Support and coping style may thus form a mutually reinforcing loop, or alternatively a downward spiral when maladaptive coping isolates caregivers from the very people who could help them.

The most statistically rigorous evidence came from the multiple linear regression analyses. After adjusting for the contributions of other variables, optimistic coping was independently associated with lower depression scores (β = −0.368, p < .001), whereas helpless coping predicted higher depression scores (β = 0.304, p < .001). Taken together, coping styles and perceived social support explained 25.9 percent of the variance in depression scores among the parents. In behavioral science, where predicting even a tenth of the variance in mental health outcomes can be considered meaningful, a quarter of the variance explained by modifiable psychosocial factors is a substantial and clinically encouraging finding.

Why does this matter? Depression and anxiety in caregivers are not merely private suffering. Parental psychiatric symptoms can affect the quality of care a child with DMD receives, the consistency of adherence to complex treatment regimens including corticosteroids and cardiac surveillance, and the emotional environment in which the child develops. Newborn screening and molecular therapies are gradually extending the lifespan and improving the outlook for boys with DMD, which means caregiving durations are lengthening. Protecting the mental health of parents is therefore becoming an integral, rather than peripheral, component of comprehensive DMD care.

The Turkish research team is careful to frame its conclusions appropriately. Because the study is cross-sectional, it captures a single moment in time and cannot establish causation. It remains possible that psychiatric symptoms themselves push parents toward helpless coping, or that unknown third factors, such as disease severity, socioeconomic strain, or personality traits, drive both coping style and distress. The authors explicitly call for longitudinal and intervention studies to clarify the direction of these associations and to evaluate whether, for example, teaching optimistic coping skills or strengthening support networks actually reduces symptoms over time. They also note that the sample, while valuable, was recruited online and may not represent all families affected by DMD in Türkiye or elsewhere.

Even with those caveats, the practical implications are clear. Health professionals working with DMD families, including neurologists, physiotherapists, occupational therapists, nurses, and psychologists, could routinely screen parents for psychiatric symptoms rather than focusing exclusively on the affected child. Screening for coping style may be equally informative: a parent leaning heavily on helpless strategies could be flagged for early psychological intervention, such as cognitive-behavioral therapy, problem-solving training, or peer support programs that connect caregivers with others who understand their daily realities. The finding that support from friends and significant others, not only family, was linked to lower anxiety suggests that support interventions should look beyond the household to the wider social circle.

Ultimately, the study reframes caregiver distress in DMD not as an unavoidable toll but as a partially modifiable outcome. If optimistic coping and robust social support genuinely shield parents from depression and anxiety, then psychosocial care can move from reactive crisis management to proactive prevention. For the mothers and fathers who wake every day to muscle biopsies, wheelchair fittings, and the quiet grief of watching a progressive disease unfold, that shift could make an enormous difference, both for their own wellbeing and for the children who depend on them most.

Subject of Research: Coping styles, perceived social support, and psychiatric symptoms in parents of children with Duchenne muscular dystrophy

Article Title: Coping styles, social support, and psychiatric symptoms in parents of children with duchenne muscular dystrophy

Article References: Arslan, B. Ç., Öz, F., Tunç, A. R., Öztürk, D., Sönmez, F. M., & Karaduman, A. A. (2026). Coping styles, social support, and psychiatric symptoms in parents of children with duchenne muscular dystrophy. BMC Psychology. https://doi.org/10.1186/s40359-026-05593-0

Image Credits: AI Generated

DOI: 10.1186/s40359-026-05593-0

Keywords: Duchenne muscular dystrophy, coping styles, social support, psychiatric symptoms, caregivers, mental health, depression, anxiety, BMC Psychology, parents, rare disease, psychosocial support