A qualitative exploration of the priorities and experiences of children with Duchenne muscular dystrophy, their parents, and healthcare professionals around weight management

Walker, Meaghan; Mistry, Bhavnita; Amin, Reshma; McAdam, Laura; Kalnins, Daina; Lui, Toni; McPherson, Amy C.

doi:10.1080/09638288.2021.2008528

Cited by 10 publications

(15 citation statements)

References 32 publications

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“…There are also many issues to discuss during routine neuromuscular clinic appointments, and some health care professionals feel apprehensive discussing the topic of weight. 18 Health services may need to consider whether it is more appropriate to offer weight management care for DMD within or external to multidisciplinary neuromuscular clinics to discuss such sensitive topics.…”

Section: Discussionmentioning

confidence: 99%

“…Prior qualitative research has identified that parents feel guilty for restricting their son's food intake and may prioritize their son's perceived happiness over weight management strategies. 18 Parents' food provision may be responsive to their son's level of functioning and some parents do not want to deny Healthy lunchboxes 20 (38) Eating for muscle health 19 (36) Healthy meals when out/healthy take-away 13 (25) Finding healthy food in the supermarket 12 (23) Eating for bone health 11 (21) Eating…”

Section: Discussionmentioning

confidence: 99%

“…15,16 Qualitative research has identified challenges associated with weight management such as competing health care priorities, the complexities of the high level of care needs that comes with DMD, and balancing dietary restriction and the enjoyment associated with food. 17,18 This study aimed to extend existing knowledge by exploring specific barriers and enablers that influence nutritionand weight-related behaviors as well as attitudes and beliefs about nutrition and weight management in the home environment. In tandem, this study aimed to collate caregivers' preferences for the design of a weight management program for young people with DMD.…”

Section: Introductionmentioning

confidence: 99%

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Exploring caregivers' attitudes and beliefs about nutrition and weight management for young people with Duchenne muscular dystrophy

Billich,

Bray,

Truby

et al. 2024

Muscle and Nerve

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Introduction/AimsObesity disproportionately affects children and adolescents with Duchenne muscular dystrophy (DMD) and with adverse consequences for disease progression. This study aims to: explore barriers, enablers, attitudes, and beliefs about nutrition and weight management; and to obtain caregiver preferences for the design of a weight management program for DMD.MethodsWe surveyed caregivers of young people with DMD from four Australian pediatric neuromuscular clinics. Survey questions were informed by the Theoretical Domains Framework and purposefully designed to explore barriers and enablers to food and weight management. Caregivers were asked to identify their preferred features in a weight management program for families living with DMD.ResultsFifty‐three caregivers completed the survey. Almost half (48%) perceived their son as above healthy weight. Consequences for those children were perceived to be self‐consciousness (71%), a negative impact on self‐esteem (64%) and movement (57%). Preventing weight gain was a common reason for providing healthy food and healthy eating was a high priority for families. Barriers to that intention included: time constraints, selective food preferences, and insufficient nutrition information. Caregivers preferred an intensive six‐week weight management program addressing appetite management and screen time.DiscussionManaging weight is an important issue for caregivers of sons with DMD; yet several barriers exist. Individualized 6 week programs are preferred by caregivers to improve weight management for DMD.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Exploring caregivers' attitudes and beliefs about nutrition and weight management for young people with Duchenne muscular dystrophy

Billich,

Bray,

Truby

et al. 2024

Muscle and Nerve

View full text Add to dashboard Cite

show abstract

“…Research on how persons with DMD under medical treatment and their families experience and cope in everyday life-especially in relation to cognitive, behavioral, and emotional functions-is sparse (Hendriksen et al, 2017). It has been shown that persons with DMD rely increasingly on assistance and support as they age and lose function, but that they also strive to maintain as much independence and control as possible (Walker et al, 2021). Literature further underscores that persons with DMD experience challenges specifically related to transitions, like finding work, accommodate higher learning, experiencing social isolation, overprotectiveness or low expectations from family (Gibson et al, 2014).…”

Section: Introductionmentioning

confidence: 99%

Perspectives on Everyday Life Challenges of Danish Young People With Duchenne Muscular Dystrophy (DMD) on Corticosteroids

Handberg

Werlauff²,

Højberg³

2022

Global Qualitative Nursing Research

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This study aimed to investigate perspectives on everyday life challenges of young persons with Duchenne muscular dystrophy in Denmark treated with corticosteroids perceived by young persons and their parents to improve rehabilitation interventions. Nineteen semi-structured interviews were conducted: 10 individual interviews with 10 persons with DMD and six individual interviews with parents (five mothers and one father) and three couple interviews (three mothers and three fathers). The analysis was guided by interpretive description methodology and Antonovsky’s Sense of Coherence theory. The results indicated that persons with Duchenne muscular dystrophy existed in a flux between experiencing greater Sense of Coherence revolving around normality and less Sense of Coherence exposing their vulnerability which unfolded in four opposing themes: (1) bodily ability and disability, (2) content and anxious, (3) sociable and lonely, and (4) independent and dependent. Future rehabilitation should aim at supporting resistance resources promoting bodily ability, being content, sociable, and independent.

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“…Qualitative studies that have been published with people living with DMD include: investigations of decision-making and preferences regarding clinical research and treatments [ 8 – 12 ]; experiences of living into adulthood [ 13 – 15 ]; impact on siblings [ 16 ]; end of life planning [ 17 ]; and specific targeted qualitative investigations into domains that may be considered aspects of, or related to, HRQoL, such as spirituality [ 18 ], identity [ 19 ], and independence [ 20 , 21 ]. Further, there are a range of qualitative studies exploring the impact of DMD on caregiver HRQoL outcomes [ 22 ].…”

Section: Introductionmentioning

confidence: 99%

A comprehensive qualitative framework for health-related quality of life in Duchenne muscular dystrophy

Powell

Carlton

2022

Qual Life Res

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Purpose Duchenne muscular dystrophy (DMD) is a rare x-linked neuromuscular condition predominantly affecting boys and men. There is a paucity of research qualitatively detailing the lived experience of health-related quality of life (HRQoL) for people with DMD. The aim of this study was to identify a comprehensive framework for better understanding HRQoL in DMD. Methods Eighteen boys and men (aged 7 to ≥ 40 years) with DMD were recruited from charity Duchenne UK, a DMD support group, and 5 UK National Health Service Trusts. Semi-structured interviews were conducted using a topic guide informed by a review into HRQoL in DMD. Generic, preference-based, patient-reported outcome measures (PROs) were used as prompts. Interviews were audio recorded, transcribed verbatim and analysed using framework analysis. Results Thirty-seven themes were coded, within seven categories. Six categories were conceptualised as components of HRQoL (autonomy, daily activities, feelings and emotions, identity, physical aspects, social relationships) and one considered an input (healthcare, support, and environment). Three additional themes were used to code feedback on the generic PROs (CHU-9D, EQ-5D, HUI). Social relationships received most coverage in the data and was noted as an omission from the PROs. Conclusion A 30-item framework for HRQoL in DMD has been developed, which was used as input into a new condition-specific HRQoL PRO and preference-based measure: the DMD-QoL. The data has value in its own right in highlighting the lived experience of HRQoL for people with DMD and as a barometer for assessing the content of HRQoL PROs for use in DMD.

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A qualitative exploration of the priorities and experiences of children with Duchenne muscular dystrophy, their parents, and healthcare professionals around weight management

Cited by 10 publications

References 32 publications

Exploring caregivers' attitudes and beliefs about nutrition and weight management for young people with Duchenne muscular dystrophy

Exploring caregivers' attitudes and beliefs about nutrition and weight management for young people with Duchenne muscular dystrophy

Perspectives on Everyday Life Challenges of Danish Young People With Duchenne Muscular Dystrophy (DMD) on Corticosteroids

A comprehensive qualitative framework for health-related quality of life in Duchenne muscular dystrophy

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