Burden, professional support, and social network in families of children and young adults with muscular dystrophies

Abstract

Introduction: This study explores burden and social and professional support in families of young patients with muscular dystrophies (MDs) in Italy. Methods: The study was carried out on 502 key relatives of 4‐ to 25‐year‐old patients suffering from Duchenne, Becker, or Limb‐Girdle MD who were living with at least 1 adult relative. Results: A total of 77.1% of relatives reported feelings of loss, 74.0% had feelings of sadness, and 59.1% had constraints in leisure activities. Burden was higher among relatives of patients with higher disability and who spent more daily hours in caregiving. Practical difficulties were higher among relatives who perceived lower help in patient emergencies and less practical support by their social network. Psychological burden was higher in those relatives who were unemployed, those with poorer support in emergencies, and those with lower social contacts. Conclusions: Caring for patients with MDs may be demanding for relatives even in the early stages of these disorders, especially when social support is poor and the patient's disability increases. Muscle Nerve 52: 13–21, 2015

Psychosocial Needs and Facilitators of Mothers Caring for Children with Duchenne/Becker Muscular Dystrophy

“…Several other studies, however, have described components of DBMD caregiving that were perceived by caregivers to be important and rewarding (Webb 2005;Pangalila et al 2012;Magliano et al 2014) as well as positive, active strategies to cope with the natural course of the disease and manage chronic sorrow (Magliano et al 2015). These findings are consistent with data from other chronic disorder studies.…”

“…Children living with chronic illness have been shown to benefit when their care models address the psychosocial needs of the entire family (King et al 2004). This may be especially relevant for disorders such as Duchenne and Becker muscular dystrophy, where caregiving and financial demands increase over time and can impact the entire family (Boyer et al 2006;Kenneson and Bobo 2010;Pangalila et al 2012;Landfeldt et al 2014;Magliano et al 2015). Duchenne muscular dystrophy (DMD) is a rare, life-threatening disorder where affected individuals have progressive loss of functional muscle fibers that results in weakness, loss of ambulation that typically occurs in the teen years, and premature death (Bushby et al 2010;Flanigan 2014).…”

“…These include psychological responses to caregiving demands (Thompson et al 1994;Wallander and Varni 1998;Silver et al 1998;Cohen 1999;Farmer et al 2004); quality of family relationships and social supports (Farmer et al 2004;Hatzmann et al 2008); time for personal care and leisure activities (Brandon 2007;Kirk 1998;Magliano et al 2015); impact of caregiving on ability to work a desired number of hours in a desired role (Kirk 1998;Thyen et al 1999;Kuhlthau et al 2005;Brandon 2007); and financial problems (Kuhlthau et al 2005;Chen and Newacheck 2006;Pelchat et al 2007;Hatzmann et al 2008). Similar to parents caring for children with other chronic disorders, Duchenne/ Becker muscular dystrophy (DBMD) caregivers report higher than average rates of adverse psychological outcomes (Daoud et al 2004;Hatzmann et al 2008;Kenneson and Bobo 2010;Landfeldt et al 2016) and lower quality of life (Hatzmann et al 2008) particularly among caregivers of children with higher degrees of disability (Magliano et al 2015). Psychological outcomes have been found to be associated with factors such as child's illness progression, social support, and financial burden (Daoud et al 2004;Boyer et al 2006;Hatzmann et al 2008;Kenneson and Bobo 2010;Landfeldt et al 2016).…”

Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan

“…50 Without respite, family caregivers can experience loss in their personal life, leisure activities, and connections to the community. 51,52 Alternative providers should be instructed on daily routines and proper transfer techniques in anticipation of respite needs and emergency support. 53 …”

Evolução da qualidade de vida de cuidadores de pacientes com distrofia muscular de Duchenne

“…Um estudo realizado na Itália mostrou que a carga psicológica é muito influenciada pelas oportunidades dos parentes de manter relacionamentos, que resulta em menor carga entre familiares que estão empregados, menos envolvidos nos cuidados diários do paciente e que mantêm contatos sociais 25 . Esses achados confirmam a importância das famílias compartilharem suas experiências com outras, através da participação em associações e grupos de autoajuda 26,27 .…”