The family impact of caring for a child with juvenile dermatomyositis

Abstract

Background Juvenile dermatomyositis (JDM), a rare autoimmune disease, accounts for more than 80% of idiopathic inflammatory myopathy childhood cases, making it the most common idiopathic inflammatory myopathy among children. The average age of onset is approximately 7 years and commonly leads a chronic course. Symptoms of JDM include cutaneous features (Gottron's rash, heliotrope rash, or nail fold capillary changes), musculoskeletal features, calcinosis and lipodystrophy (a symmetrical deficit of subcutaneous fatty tissue), and acanthosis (thickening of the skin). Despite improvement in treatment regimens and the lowering of mortality rates, some children still lose their lives to JDM. This study assessed the effects of caring for a child diagnosed with JDM on the family system. Methods Participants included 36 mothers and 3 fathers of a child diagnosed with JDM. Parents were administered self-report measures, which assessed the overall family functioning (PedsQL-Family Impact Module), and the parents' mood and level of distress (profile of mood states). Additionally, parents were administered a semi-structured interview that included background information, psychosocial information, and sources of support. Results and conclusion Families of children with JDM reported difficulties in family functioning, communication problems, and an increased number of conflicts. Parents appeared to be experiencing higher than average levels of worry, worse physical functioning, and family relationships when compared to normative populations. Parents would benefit from psychosocial support due to the many challenges associated with caring for a child with JDM.

Being on the juvenile dermatomyositis rollercoaster: a qualitative study

“…More recently, in a study exploring the psychosocial impact of having a child with JDM, 39 caregivers were asked to complete questionnaires. Results indicate that children with active JDM had significant lower QoL and family functioning compared to normative populations [12]. A major limitation of both these studies was the exclusion of CYP as research participants.…”

A brief version of the Pediatric Inventory for Parents (PIP) in Spanish population: Stress of main family carers of chronic paediatric patients

“…Indeed, stress and emotional distress levels are higher for such parents than for caregivers of healthy children, with this difference being especially pronounced in the case of mothers [ 6 ]. Parents and children who have high levels of stress report greater levels of anxiety and depression [ 7 – 9 ] and an increase in family conflicts [ 10 ]. It is important to pay attention to the caregiver's adjustment to his or her child's diagnosis, as inappropriate parental behaviors have been observed to influence the patient's symptoms.…”

<p>Multispecialty approach for improving outcomes in juvenile dermatomyositis</p>

“…Without adequate support, this may limit educational and career prospects, impair the ability to form social relationships, and damage self-esteem. Moreover, not only patients, but also their siblings and parents, are vulnerable to psychological distress, and could benefit from psychosocial assessments and interventions at disease onset and throughout its course 42. Thus, many pediatric rheumatology services have engaged dedicated psychologists and social workers for addressing this issue.…”