An Integrative Review Exploring Psycho-Social Impacts and Therapeutic Interventions for Parent Caregivers of Young People Living with Duchenne’s Muscular Dystrophy

Porteous, Debbie; Davies, Barbara; English, Christine; Atkinson, Joanne

doi:10.3390/children8030212

Cited by 7 publications

(7 citation statements)

References 39 publications

(106 reference statements)

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“…Another study found a higher degree of physical and emotional fatigue due to the work of "caring" for the dependent person is associated with a higher presence of cardiovascular somatic symptoms (22). It has been reported that parents of children with NMDs who had developed health problems (sleep problems, back problems and hypertension) were worried about not being as able to care for their child, which ultimately increased overload (4). Burnout syndrome can therefore be significantly influenced by individuals' cognitions and how they perceive themselves, i.e., whether they perceive themselves as being able to cope with caregiving tasks.…”

Section: Factors That Influence Caregiver Overloadmentioning

confidence: 99%

“…Most NMDs are genetic and manifest clinically during childhood (3). All NMDs have in common the following symptoms that eventually lead to dependence in the patient: muscle weakness, musculoskeletal deformity and pain, deteriorating respiratory and cardiac function loss of ambulation, and fatigue (4,5). This results in a need for constant supervision and attention, thus most patients with NMDs live at home and receive daily assistance from family members, and the majority of them are usually parents.…”

Section: Introductionmentioning

confidence: 99%

“…As a result of these factors, chronic stress is one of the main challenges among informal caregivers (7,8). Parents of children with NMDs have generally poorer mental health than those who do not have children with NMDs and are at a higher risk of developing mental health problems, such as anxiety and depression (4,10,12). Therefore, these parents may suffer from caregiver overload or burnout syndrome.…”

Section: Introductionmentioning

confidence: 99%

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Predictors of overload in parents of children with neuromuscular diseases

Rodríguez,

García,

Martínez

et al. 2024

Front. Neurol.

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IntroductionParents of children with neuromuscular diseases experience multiple difficulties in their daily lives that affect their physical and psychological health. The risk factors for these health issues have not been sufficiently investigated. Therefore, the aim of this study was to analyze the potential predictors of overload in these parents, including QoL, somatic symptomatology, life satisfaction, psychological adjustment and certain sociodemographic variables.MethodsA cross-sectional research study was conducted among parents who are caregivers for children with NMD in Spain. A convenience sample of 110 parents who were contacted by associations and hospitals was used. Variables were evaluated using the sociodemographic questionnaire, CarerQol-7D, PHQ-15, Barthel Index, Psychological Adaptation Scale, Zarit Overload Scale and Satisfaction with Life Scale.ResultsOne of the most relevant findings of the present study is the identification of 3 overload groups (mild to moderate, moderate to severe, and severe overload) based on life satisfaction and somatic symptom scores within the predictive model of the discriminate analysis. Wilk’s lambda of the discriminant function was 0.568, χ2 (2, n = 55) = 8.815, p < 0.001.DiscussionThis study presents a model that reveals the influence of unemployment, having a child with a severe level of dependency, the presence of somatic symptomatology and life satisfaction on caregiver overload. Likewise, the caregiver’s self-esteem could be a protective factor against overload.

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Section: Factors That Influence Caregiver Overloadmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Predictors of overload in parents of children with neuromuscular diseases

Rodríguez,

García,

Martínez

et al. 2024

Front. Neurol.

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“…Since this study is international, the supportive programs are unique to each country and cannot be compared, as the number of resources available, government support, and disease frequency play a role in determining the administration of such programs. Thus, further exploring the availability and accessibility of support programs such as therapy will allow caregivers to prioritize their mental health and mitigate the negative impacts taking care of a patient with a terminal illness may induce (e.g., anxiety, depression) [ 10 , 12 ].…”

Section: Reviewmentioning

confidence: 99%

Exploring the Dynamics of Caring for a Child With a Terminal Illness of Duchenne Muscular Dystrophy (DMD) and Its Copious Components on the Caregivers

Balidemaj,

Parsamanesh,

Vysochyn

2023

Cureus

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Duchenne muscular dystrophy (DMD) is an inherited disorder that results in increasing muscle degeneration and muscle weakness because of a mutation in the dystrophin protein. Despite there being no cure for this condition, early diagnosis can slow down the progression of muscle weakness. Studies have shown that families and caregivers of patients with DMD have limited access to support systems, further intensifying their responsibilities. Since the mental well-being of families and caregivers of patients with DMD is crucial for healthy and progressive family dynamics, ascertaining the psychological and social impacts it has on the caregivers will help improve the quality of life of patients with this terminal illness. This study aims to recognize the direct and indirect effects on the caregiver caring for the individual diagnosed with DMD, with a primary focus on the health-related quality of life (HRQoL), psychological well-being, and financial burden. Using the PubMed database and a particular arrangement of Medical Subject Headings (MeSH) terms, 93 articles were retrieved and evaluated, of which eight only met the inclusion criteria. The eight chosen articles were organized into a table and dissected further for their importance and relevance to this review article. This literature review highlights the most significant information from each article and is individually analyzed to deduce the main burdens on caregivers of patients with the terminal illness of DMD. Conclusively, this review highlights that caregivers of individuals with DMD bear a substantial burden that negatively affects their HRQoL, contributes to a decline in psychological well-being, and places an increased financial burden on the family.

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“…Duchenne muscular dystrophy (DMD) is a lethal X-linked disease characterized by progressive muscle wasting with high burden on patients and family members. 1 , 2 , 3 , 4 The prevalence is estimated to 19.8 per 100,000 live male births, 7.1 cases per 100,000 males, and 2.8 cases per 100,000 individuals in the general population. 5 The prevalence is also evaluated at 10.9, 6.1, 2.2, and 1.9 per 100,000 males respectively in France, Canada, the United Kingdom, and the United states.…”

Section: Introductionmentioning

confidence: 99%