The lived experience of hope among parents of a child with Duchenne muscular dystrophy: perceiving the human being beyond the illness

Samson, André; Tomiak, Eva; DiMillo, Julia; Lavigne, Rocío; Miles, Sarah; Choquette, Mireille C.; Chakraborty, Pranesh; Jacob, Pierre

doi:10.1177/1742395309104343

Cited by 66 publications

(83 citation statements)

References 30 publications

(38 reference statements)

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“…The optimal time to communicate information about respiratory health in this population appears to be when one discusses etiology and when families indicate that they are ready to hear more. This would be consistent with the research of Samson et al (21), who noted that when it is possible for an individual to take charge of his existence, there is hope.…”

Section: Discussionsupporting

confidence: 91%

Communication regarding breathing support options for youth with Duchenne muscular dystrophy

Ferguson

Wright

Carter

et al. 2011

Paediatrics &Amp; Child Health

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T wenty-year-old Mitchell (name changed) appeared in front of his mother one morning and mouthed to her, "I can't breathe". He had to repeat himself because she did not initially understand.When she realized what was happening, she called 911 and then began cardiopulmonary resuscitation. He was taken to the nearest intensive care unit where he underwent a tracheostomy and was put on a ventilator. Mitchell and his mother were involved in their first discussion about ventilation that morning. They were told that it would be permanent. We do not know the specifics of their discussion, but Mitchell's mother reported that his response was a request to 'pull the plug', and that is how his life ended.One of the authors had known Mitchell since he was four years of age; had watched this hyperactive little boy run and stumble, then struggle to his feet; had watched his mother carry him up three flights of stairs to their tiny apartment; and had watched him 'graduate' from a manual wheelchair to a powerchair with tilt.Through it all, he had been amazingly healthy, so his quick death was, and remains, a shock. The process was not questioned at that time, but we did gradually came to question it and began a search for answers. The literature shows that breathing support options can enable some individuals to regain a measure of control in their lives, which have been extended meaningfully -for them and for those who love them.The progression of Duchenne muscular dystrophy (DMD) is predictable. The timeframe varies, but it progresses for others just as it did for Mitchell. Although mobility changes are very apparent to the children and their families, the weakening of the inspiratory muscles and the abdominals, which provide the power for a productive cough, is not as apparent. This weakening happens more insidiously because as boys become less active, they do not stress their cardiovascular and respiratory systems as they once did. Those who manage the health of these boys must be aware of the potential issues in facilitating access BaCkgROunD: Ventilators for home use, manual and mechanically assisted coughing techniques, and the services of in-home respiratory therapists are options for youth with Duchenne muscular dystrophy (DMD). Evidence supports the use of these modalities, but there seems to be few youth who are receiving these therapies. Is there a knowledge transfer issue? Is there a lack of resources? What is the best way to discuss the issues? What do youth and parents want? OBJECTIVE: To determine practices, attitudes and beliefs regarding the timing and content of client/family communication related to ventilatory support decisions for individuals with DMD. METHODs: A questionnaire was sent to all 19 children's treatment centres in Ontario. The lead clinician responded on behalf of his or her centre. Another questionnaire was given to 11 families who attended a parent support meeting. REsulTs: Respondents from the treatment centres who provide services for youth with DMD indicated that there are resources in te...

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Section: Discussionsupporting

confidence: 91%

Communication regarding breathing support options for youth with Duchenne muscular dystrophy

Ferguson

Wright

Carter

et al. 2011

Paediatrics &Amp; Child Health

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“…Bjork et al 26 found that the family's life world fell apart, and they experienced fear, uncertainty, chaos, powerlessness, and loneliness after the diagnosis of acute lymphoblastic leukemia, and parents thought their child would die. Horton and Wallander 27 stated that hope was a resilience factor, and Samson et al 19 reported that it helped parents to absorb the initial crisis of the diagnosis of Duchenne muscular dystrophy.…”

Section: Summary Of the Model: Keeping Hope Possiblementioning

confidence: 98%

Keeping Hope Possible

et al. 2014

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“…5,6,9,10 However, survey and interview studies have also described components of DBMD caregiving that were perceived as beneficial, including an improved ability to appreciate life experiences and other positive coping strategies to manage the progressive disease course and chronic sorrow. [12][13][14][15] Pangalila and colleagues' 5 cross-sectional study of parents of adults with DBMD found not only high subjective burden, but also high rating of care as important and rewarding. Kenneson and Bobo 6 found that general life satisfaction was associated with high social support, high resiliency, and high income.…”

Section: Introductionmentioning

confidence: 99%

Mothers’ psychological adaptation to Duchenne/Becker muscular dystrophy

et al. 2015

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Duchenne and Becker muscular dystrophy (DBMD) cause significant emotional and care-related burden on caregivers, but no studies have evaluated predictors of positive caregiver outcomes, including disorder-specific psychological adaptation. Using a community-engaged approach focused on supporting mothers in positive aspects of caregiving, this prospective study aims to assess (i) the association between child's baseline functional status and mothers' illness perceptions, resilience, and coping selfefficacy; and (ii) predictors of mothers' psychological adaptation to caring for a child with DBMD. Biological mothers with at least one living child with DBMD completed a baseline survey (n = 205) with 1-year (n = 147) and 2-year (n = 144) follow-up surveys. Worse child's baseline function was associated not only with increased caregiver burden and reduced maternal resilience, but also with perception of positive disease impact on the family. At two follow-ups, increased psychological adaptation to DBMD was predicted by resilience (β = 0.264, P = 0.001) and perceived positive impact (β = 0.310, Po0.001), controlling for mother's age (β = − 0.305, Po0.001) and income (β = − 0.088, P = 0.245). Child's functional status and caregiver burden of DBMD did not predict DBMD-specific adaptation. Though clinicians caring for families with DBMD should anticipate increased caregiver burden as the disorder progresses, interventions focused on caregiver burden are not expected to influence mothers' psychosocial adaptation. Efforts to improve mothers' well-being should focus on fostering mothers' resilience and enhancing perceptions of positive disease impact (benefit finding). Results suggest that psychosocial interventions can highlight strengths and well-being rather than burden and deficit.

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The lived experience of hope among parents of a child with Duchenne muscular dystrophy: perceiving the human being beyond the illness

Cited by 66 publications

References 30 publications

Communication regarding breathing support options for youth with Duchenne muscular dystrophy

Communication regarding breathing support options for youth with Duchenne muscular dystrophy

Keeping Hope Possible

Mothers’ psychological adaptation to Duchenne/Becker muscular dystrophy

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