“I have got something positive out of this situation”: psychological benefits of caregiving in relatives of young people with muscular dystrophy

Magliano, Lorenza; Patalano, Melania; Sagliocchi, Alessandra; Scutifero, Marianna; Zaccaro, Antonella; D’Angelo, Maria Grazia; Civati, Federica; Brighina, Erika; Vita, Giuseppe; Sframeli, Maria; Pane, Marika; Scalise, Roberta; D’Amico, Adele; Colia, Giulia; Catteruccia, Michela; Balottin, Umberto; Berardinelli, Angela; Motta, Maria Chiara; Angelini, C.; Gaiani, Alessandra; Semplicini, Claudio; Bello, Luca; Battini, Roberta; Astrea, Guja; Ricci, Giulia; Politano, Luisa

doi:10.1007/s00415-013-7176-8

Cited by 32 publications

(48 citation statements)

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“…These findings confirm that home management of patients with MDs may be demanding for patients' relatives, especially when social and professional resources are poor and patients' functional abilities decrease. Efforts are needed, both at the level of health policies and professional training, to help caregivers and patients face the difficulties of MDs and to value such complex family experience …”

Section: Discussionmentioning

confidence: 99%

“…In MDs, family burden is influenced significantly by socio‐demographic characteristics of the relatives, clinical severity of the MD, and by personal, social, and professional resources. Burden is higher among mothers, unemployed relatives, and families at low income levels . Family difficulties are greater among relatives of patients at lower levels of functional abilities, in wheelchairs, and on ventilation and/or tracheotomy .…”

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confidence: 99%

“…Furthermore, these studies have mainly addressed family burden in DMD and scarcely explored it in other MDs . Family constraints likely vary in relation to the type and stage of MD, medical needs of care, and expectations for the future, in both patients and their relatives . Finally, little is known about the amount and quality of psychological treatments provided to patients and their relatives in routine conditions, and about the impact of these treatments on family burden.…”

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confidence: 99%

“…Given the large data bank, we planned to report the results in several papers, each focusing on a specific aspect of the complex experience of caregiving in these disorders. In the previous paper based on the above‐mentioned survey, we tested whether relatives' perceptions of psychological benefits varied in relation to their view of the patient as a valued person, the degree of involvement in care, and the levels of support provided by their social network and professionals. We found that 88% of key relatives stated they had gotten something positive out of the situation, such as personal growth, resilience, and altruism.…”

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

et al. 2015

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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

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confidence: 99%

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

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“…Caregivers generally report a high level of life satisfaction, 18,19 but they also report stress and emotional and physical burden. 20 Providing support to caregivers at the time of diagnosis is critical in promoting their successful adjustment.…”

Section: Psychological Managementmentioning

confidence: 99%

Psychosocial Management of the Patient With Duchenne Muscular Dystrophy

et al. 2018

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POTENTIAL CONFLICT OF INTEREST: Within the past 12 months, Dr Gibbons was a consultant for Sarepta Therapeutics and attended an advisory board meeting; the other authors have indicated they have no potential conflicts of interest to disclose. Significant progress has been made in managing the medical needs of patients who have Duchenne muscular dystrophy (DMD). As a result, many patients live well into adulthood and have the potential to lead independent, productive lives. However, the challenge of coping with a chronic and progressive illness from childhood into young adulthood is formidable. Close monitoring and appropriate interventions focused on improving emotional and social functioning should be The guidelines or recommendations in this article are not American Academy of Pediatrics policy, and publication herein does not imply endorsement. In this article, we outline a comprehensive plan for the psychosocial management of patients with Duchenne muscular dystrophy (DMD) across the life span. In 2010, the Centers for Disease Control and Prevention sponsored the development of multidisciplinary management guidance for DMD, and in 2018, that guidance was updated. In the intervening years, a new emphasis was placed on studying and addressing the psychosocial issues that affect patients with DMD, driven in part by improved patient survival. Once viewed as ancillary to managing the significant medical needs of patients with DMD, it is now standard practice to integrate psychosocial management into the multidisciplinary management of the disease. It is also increasingly recognized that neurodevelopmental disorders in DMD occur at a higher rate than what was previously understood and that these disorders warrant early and intensive intervention. In this article, we expand on the content found in the 2018 DMD Care Considerations.

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Quantifying the burden of caregiving in Duchenne muscular dystrophy

et al. 2016

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Duchenne muscular dystrophy (DMD) is a rare pediatric neuromuscular disease associated with progressive muscle degeneration and extensive care needs. Our objective was to estimate the caregiver burden associated with DMD. We made cross-sectional assessments of caregiver health-related quality of life (HRQL) and burden using the EuroQol EQ-5D, a Visual Analogue Scale (VAS), the SF-12 Health Survey, and the Zarit Caregiver Burden Interview (ZBI) administered online. Results were stratified by disease stage (early/late ambulatory/non-ambulatory) and caregivers’ rating of patients’ health and mental status. In total, caregivers to 770 patients participated. Mean EQ-5D utility ranged between 0.85 (95 % CI 0.82–0.88) and 0.77 (0.74–0.80) across ambulatory classes and 0.88 (0.85–0.90) and 0.57 (0.39–0.74) across caregivers’ rating of patients’ health and mental status. Mean VAS score was 0.74 (0.73–0.75), mean SF-12 Mental Health Component Summary score 44 (43–45), and mean ZBI score 29 (28–30). Anxiety and depression, recorded in up to 70 % of caregivers depending on patients’ health and mental status, was significantly associated with annual household cost burden (>$5000 vs. <$1000, odds ratio 1.76, 95 % CI 1.18–2.63) and hours of leisure time devoted to informal care per week (25–50 vs. <25 h 2.01, 1.37–2.94; >50 vs. <25 h 3.35, 2.32–4.83) (p < 0.007). We show that caring for a person with DMD can be associated with a substantial burden and impaired HRQL. Our findings suggest that caregivers to patients with DMD should be screened for depression and emphasize the need for a holistic approach to family mental health in the context of chronic childhood disease.Electronic supplementary materialThe online version of this article (doi:10.1007/s00415-016-8080-9) contains supplementary material, which is available to authorized users.

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“I have got something positive out of this situation”: psychological benefits of caregiving in relatives of young people with muscular dystrophy

Cited by 32 publications

References 41 publications

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

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

Psychosocial Management of the Patient With Duchenne Muscular Dystrophy

Quantifying the burden of caregiving in Duchenne muscular dystrophy

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