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Psychosocial adjustment and parental stress in Duchenne Muscular Dystrophy

Vanya Gocheva1, Simone Schmidt2, Anna-Lena Orsini3

  • 1Division of Neuropediatrics and Developmental Medicine, University Children's Hospital of Basel (UKBB), University of Basel, Basel, Switzerland.

European Journal of Paediatric Neurology : EJPN : Official Journal of the European Paediatric Neurology Society
|October 6, 2019
PubMed

Insights

Psychosocial adjustment in children with Duchenne Muscular Dystrophy (DMD) is improved by lower parental stress and support group participation. A family-centered approach is key for these children and their families facing DMD challenges.

Area of Science:

  • Pediatric Psychology
  • Neuromuscular Disorders
  • Family Health

Background:

  • Duchenne Muscular Dystrophy (DMD) significantly impacts children's lives.
  • Assessing psychosocial adjustment in children with DMD is crucial for effective support.
  • Parental stress is a potential factor influencing child well-being.

Purpose of the Study:

  • To evaluate the psychosocial adjustment of children diagnosed with Duchenne Muscular Dystrophy (DMD).
  • To investigate the relationship between parental stress and the psychosocial adjustment of children with DMD.
  • To identify factors contributing to better psychosocial adjustment in this population.

Main Methods:

  • A cross-sectional study involving 34 children with DMD (ages 9-14.1) and their parents.
  • Caregivers completed standardized questionnaires assessing child behavior and parenting stress.
  • Children over 11 completed self-report measures; regression analyses explored influencing factors.

Main Results:

  • 15%-47% of children with DMD were identified as psychosocially at risk.
  • High levels of parental stress were reported by half of the caregivers.
  • Parental stress, particularly dysfunctional interaction and difficult child scores, correlated with psychosocial adjustment.

Conclusions:

  • The Psychosocial Adjustment and Role Skills Scale III (PARS-III) is recommended for assessing psychosocial adjustment in DMD.
  • Reduced parental stress and involvement in DMD support groups positively impact children's psychosocial adjustment.
  • Family-centered interventions are vital for supporting children with DMD and their families.
Abstract

Keywords:
CBCLDuchenne muscular dystrophyPARS-IIIPSI-SFParental stressPsychosocial adjustment

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