Depression in parents of children with duchenne muscular dystrophy

Daoud, Marie S Abi; Dooley, Joseph M.; Gordon, Kevin

doi:10.1016/j.pediatrneurol.2004.01.011

Cited by 64 publications

(54 citation statements)

References 7 publications

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“…It has been suggested that parents become preoccupied with their child affected by DMD [Witte, 1985] and that mothers are aware of a particularly strong bond with them [Morrow, 2004]. It is also difficult and stressful for parents to explain DMD to their sons [Witte, 1985; Fitzpatrick and Barry, 1986; Abi Daoud et al, 2004]. Findings from this study support the notion that DMD and the affected child become central to parents' and particularly mothers' lives and illustrate the link between this and reticence to explain DMD to children.…”

Section: Discussionmentioning

confidence: 99%

“…On an ongoing basis parents, and particularly mothers, were often inhibited from giving children information about DMD by a range of their own emotions or fear of provoking emotional responses in children. In coming to terms with DMD parents need access to counseling or mental health professionals [Gagliardi, 1991; Abi Daoud et al, 2004], with particular attention for mothers to help them address guilt, which has also been suggested in other studies relating to X‐linked conditions [James et al, 2006]. Supporting parents psychologically by addressing their own needs may help their communication with their children as well as helping them develop improved coping strategies.…”

Section: Discussionmentioning

confidence: 99%

“…In particular they have been found to suffer high levels of stress, anxiety, and depression [Buchanan et al, 1979; Witte, 1985; Thompson et al, 1992; Cakaloz and Kural, 2005]. Mothers usually bear the brunt of their sons' emotional distress as well as physical care [Morrow, 2004], and may also feel guilty about their genetic role in the condition [Abi Daoud et al, 2004; James et al, 2006]. They report adverse effects on their daily lives [Abi Daoud et al, 2004] and family relationships [Cakaloz and Kural, 2005].…”

Section: Introductionmentioning

confidence: 99%

“…Mothers usually bear the brunt of their sons' emotional distress as well as physical care [Morrow, 2004], and may also feel guilty about their genetic role in the condition [Abi Daoud et al, 2004; James et al, 2006]. They report adverse effects on their daily lives [Abi Daoud et al, 2004] and family relationships [Cakaloz and Kural, 2005].…”

Section: Introductionmentioning

confidence: 99%

“…It has been suggested that one of the stressors for parents is the fear of explaining DMD to their son [Abi Daoud et al, 2004]. Studies have found parents reluctant to talk to their sons about DMD and suggest a common situation in families where neither parent nor child feels willing or able to raise the issue [Witte, 1985; Fitzpatrick and Barry, 1986].…”

Section: Introductionmentioning

confidence: 99%

See 4 more Smart Citations

Family communication about genetic risk information: Particular issues for Duchenne muscular dystrophy

Plumridge

Metcalfe

Coad

et al. 2010

American J of Med Genetics Pt A

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Open family communication about genetic conditions and associated risk is important to children's identity, coping and decision making. Parents however find talking to their children difficult and because of associated care needs and emotional reactions it can be particularly stressful in families affected by Duchenne muscular dystrophy (DMD). This article reports on the findings of a group of families affected by DMD who formed part of a larger study where adult and child members of 33 families affected by one of six genetic conditions were interviewed. Parents thought they should talk to children about a genetic condition in their family and children wanted information and open discussion. In families affected by DMD clear gender differences were identified between mothers and fathers in coping and in their roles in relation to the condition. There was a particularly close bond between mothers and affected sons. For most conditions, mothers were central to giving children information but the identified issues made this problematic in families with DMD. This resulted in affected children receiving little information about their condition at all and female siblings being unlikely to receive information about their potential carrier status until they were about 16-year old. Insight into family communication within families affected by DMD assists healthcare professionals in recognizing and meeting the particular support needs of this group of families.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Family communication about genetic risk information: Particular issues for Duchenne muscular dystrophy

Plumridge

Metcalfe

Coad

et al. 2010

American J of Med Genetics Pt A

View full text Add to dashboard Cite

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The motivations and methods behind sharing a pediatric Prader–Willi syndrome diagnosis

Moy,

Denton,

Bohonowych

et al. 2024

American J of Med Genetics Pt A

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Prader–Willi syndrome (PWS) is a genetic condition caused by a lack of paternally‐expressed imprinted genes at chromosome 15q11.2‐q13 and characterized by hyperphagia, behavioral challenges, and variable intellectual disability. Once a PWS diagnosis is established, sharing diagnosis information with an affected child can be challenging due to its early age of onset and diverse phenotype. This mixed‐methods study aimed to evaluate how parents and guardians have shared a PWS diagnosis with their child and examine the motivating and influencing factors behind their disclosure. Parents and guardians of children with PWS aged at least 5 years completed a survey, and a select group completed an interview. A total of 51 surveys and 15 interviews were completed, with the majority of participants (n = 46; 90%) having shared at least some diagnosis information with their child. Parents and guardians were more likely to disclose if they self‐reported a higher level of knowledge about PWS (p = 0.004) and if their child is currently older (p = 0.02) and/or has at least one sibling (p = 0.046). Interview analysis revealed 15 themes and 10 subthemes that illustrated parents' motivations, methods, and experiences with disclosure. This research provides information for others considering disclosure of PWS or another rare diagnosis with their child.

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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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Depression in parents of children with duchenne muscular dystrophy

Cited by 64 publications

References 7 publications

Family communication about genetic risk information: Particular issues for Duchenne muscular dystrophy

Family communication about genetic risk information: Particular issues for Duchenne muscular dystrophy

The motivations and methods behind sharing a pediatric Prader–Willi syndrome diagnosis

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

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