Psychosocial Challenges in Family Caregiving with Children Suffering from Duchenne Muscular Dystrophy

Abstract

Families of children with Duchenne muscular dystrophy (DMD) go through significant challenges in dealing with the condition. Few studies have looked into the situation, especially in the sociocultural scenario that is unique to India. The authors' aim was to identify the psychosocial challenges for caregivers of children with DMD. A cross-sectional descriptive study was perfomed among the caregivers of 60 children with DMD who were attending the neuromuscular disorders clinic of a national tertiary referral center for neurological disorders. The knowledge and attitude, psychosocial needs, burden, and coping patterns were assessed in an interview. The findings showed that parents of children with DMD tended to have inadequate understanding of the disease but had a positive attitude, had a moderate family burden, and tended to rely more on religion, focus on and venting of emotions, and instrumental and emotional social support for coping. Caregivers of children with DMD would benefit from psychosocial intervention to address their understanding of and attitude toward the disease, as well as burden of dealing with it, and to help them develop their coping skills and meet their children's and their own needs.

Duchenne muscular dystrophy and caregiver burden: a systematic review

“…In total, seven articles measured overall caregiver burden, [9][10][11][12][13][14]22 five HRQoL, [10][11][12][13][14] four stress, 14,[16][17][18] six work life, informal care, and/or associated cost burden, 11,[19][20][21][22]28 five family problems and functioning, 9,14,15,23,24 six sleep, 13,15,21,[25][26][27] five pain and/or discomfort, 12,13,21,23,24 two strain, 13,28 nine anxiety and/or depression, [12][13][14][15]23,24,[26][27][28] two overall caregiver health, 23,24 one self-esteem and mastery (i.e. that life chances are under one's own control), <...>…”

“…Of the 21 included articles, 20 recorded data using surveys, [9][10][11][12][13][14][15][16][17][18][19][20][21][23][24][25][26][27][28][29] seven through interviews, 9,14,15,17,22,27,29 six using a combination of interviews and surveys, 9,14,15,17,27,29 and one using clinical examinations. 27 Moreover, as evident from Table I, a wide range of instruments were used to investigate different aspects of caregiver burden.…”

“…12,13,21,23,24 Additionally, there are data from Germany showing that many caregivers to patients with DMD experience burn-out syndrome. 21 Concerning the burden on siblings to patients with DMD, Read et al 14,22 and Thomas et al 9 reported that siblings were deeply involved in the provision of informal care. However, in terms of impact, siblings in the study by Read et al 22 described their situation as 'normal' as it was 'all they had ever known'; yet, some parents described frustration expressed by siblings over caring activities and responsibilities.…”

Understanding adherence to noninvasive ventilation in youth with Duchenne muscular dystrophy

“…The children's Yale-Brown obsessive-compulsive scale-parent report (CY-BOCS-PR) is a 10 item parent-report questionnaire that assesses distress and impairment caused by obsessions (5 items) and compulsions (5 items) in the youth. Higher scores represent more severe impairment: subclinical (0-7), mild (8)(9)(10)(11)(12)(13)(14)(15), moderate (16)(17)(18)(19)(20)(21)(22)(23), severe (24)(25)(26)(27)(28)(29)(30)(31), and extreme (32)(33)(34)(35)(36)(37)(38)(39)(40). Internal consistency coefficients ranged from 0.70 to 0.86 for the subscales (ie, obsession, compulsion, total).…”

“…Embedded within the parent-child interaction is the degree of stress experienced by caregivers. [16][17][18][19] Families of children with neuromuscular disease experience greater stress than those other pediatric conditons 20 due to caregiver 17,18,[21][22][23] and child factors. 16,21,23 Boys with DMD often have impaired verbal IQ related to underlying disease pathology, [24][25][26] which in turn contributes to behavior problems and family stress.…”