Psychosocial adjustment in siblings of young people with Duchenne muscular dystrophy

Title

Psychosocial adjustment in siblings of young people with Duchenne muscular dystrophy

Creator

Read J; Kinali M; Muntoni F; Garralda ME

Publisher

European Journal Of Paediatric Neurology

Date

2010

Subject

Adaptation Psychological; Muscular Dystrophy Duchenne/px [psychology]; Siblings/px [psychology]; Adolescent; Child; Female; Humans; Male; Mental Health; Psychiatric Status Rating Scales; Psychology; Surveys And Questionnaires

Description

Duchenne muscular dystrophy (DMD) is a progressive, impairing, life-limiting disorder of childhood. Little is known about how siblings adapt to this. The aim of this study is to document psychosocial adjustment in siblings of patients with DMD. Healthy siblings (11-18 years old) of young people with DMD attending a specialist paediatric centre and their parent/main carer took part. Parents, siblings and teachers completed a battery of questionnaires: (i) to assess psychiatric risk the Strengths and Difficulties Questionnaire (SDQ), General Health Questionnaire (GHQ), Hospital Anxiety and Depression Scale (HADS); (ii) to measure general wellbeing: SF-36; (iii) to document DMD illness disability: Functional Disability Inventory (FDI); (iv) to assess family function and life stresses for the unaffected sibling: Family Assessment Device (FAD), Family Burden Interview Schedule and Life Events Checklist. Forty six/77 eligible siblings (24 females/22 males); (mean age 14 years (SD 2.3)) took part. Although their mean psychological functioning and wellbeing questionnaire scores were comparable to normative data, there was a trend for more siblings scoring at high-risk for psychological (mainly emotional) problems. Weak/moderate associations with psychological symptoms in siblings varied according to informant and included the following factors: closeness in age to the affected sibling; older sibling age; extent of wheelchair use, burden of illness on family interactions, and siblings reporting high impact of illness on their lives. Psychological symptoms were also associated with less sibling involvement in patient care, with broader psychosocial and family disadvantage and with life stresses. Siblings have an increased risk for emotional problems, which appears influenced by specific illness factors.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

December 2017 List

Notes

Read, Joy
Kinali, Maria
Muntoni, Francesco
Garralda, M Elena
S1090-3798(09)00181-0

Citation

Read J; Kinali M; Muntoni F; Garralda ME, “Psychosocial adjustment in siblings of young people with Duchenne muscular dystrophy,” Pediatric Palliative Care Library, accessed September 18, 2021, https://pedpalascnetlibrary.omeka.net/items/show/11066.

Social Bookmarking