Adaptive skills and mental health in children and adolescents with neuromuscular diseases

Gosar, David; Košmrlj, Lejla; Musek, Petra Lešnik; Meško, Tamara; Stropnik, Staša; Krkoč, Vesna; Golli, Tanja; Butenko, Tita; Loboda, Tanja; Osredkar, Damjan

doi:10.1016/j.ejpn.2020.10.008

Cited by 11 publications

(8 citation statements)

References 53 publications

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“…In addition, we found that children with NMD having more emotional di culties were associated with poorer social and psychosocial-related quality of life. Previous studies have shown that children with NMD are at an increased risk of mental health problems [10][11][12][13] . For example, children with myotonic dystrophy 14 and DMD are more likely to have weaker social skills and internalise their symptoms e.g.…”

Section: Discussionmentioning

confidence: 99%

“…Our NMD cohort had a spectrum of medical complexity and physical disabilities. Nonetheless, even those with mild disease manifestations may experience functional impairments and physical limitations that directly affect their activities of daily living and adaptive skills 10 , thus leading to poorer physical-related quality of life. In addition, we found that children with NMD having more emotional di culties were associated with poorer social and psychosocial-related quality of life.…”

Section: Discussionmentioning

confidence: 99%

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Impact of COVID-19 pandemic on the psychosocial well-being of children with neuromuscular disorders

Tso

Yip

et al. 2022

Preprint

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To examine the impact of COVID-19 on the psychosocial wellbeing in children with neuromuscular disorders (NMD), the parents of 41 children with NMD aged 3-12 years completed a survey during COVID-19 pandemic. The findings were compared to those of the parents of 164 matched typically-developed (TD) children. Health-related quality of life and lifestyle habits of the NMD group were compared with the TD group using independent two-sample t-test. Children with NMD with uninterrupted disease-modifying treatments showed higher PedsQL total scores during the pandemic compared to the pre-pandemic state (p=0.012). PedsQL total score in the NMD group was significantly lower than the TD group (p<0.001). Those with disrupted rehabilitation training (73.8% of NMD group) had significant lower PedsQL scores compared to those with continuous training (p = 0.012). Parental guidance on the usage of electronic devices was significantly associated with the total score of PedsQL, particularly in the NMD group (p=0.007). In conclusion, children with NMD have had a poorer quality of life than TD children during the COVID-19 pandemic. Our study highlights the importance of parental guidance on electronic device usage, the continuation of drug treatment, and rehabilitation training for the psychosocial wellbeing of children with NMD during the pandemic.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Impact of COVID-19 pandemic on the psychosocial well-being of children with neuromuscular disorders

Tso

Yip

et al. 2022

Preprint

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“…While not all pediatric patients with MD present a phenotype associated with these neuropsychiatric syndromes, prototypical behavioral traits are common ( Hinton et al, 2006 ; Fujino et al, 2018 ; Gosar et al, 2021 ). It is necessary to consider these prototypical behavioral traits due to their significant involvement in social–emotional development ( Darke et al, 2006 ; Panda and Sharawat, 2021 ).…”

Section: Introductionmentioning

confidence: 99%

“…It is necessary to consider these prototypical behavioral traits due to their significant involvement in social–emotional development ( Darke et al, 2006 ; Panda and Sharawat, 2021 ). In fact, children with MDs often show more restricted social and communication skills ( Darke et al, 2006 ; Tesei et al, 2020 ; Gosar et al, 2021 ). They also seem to have difficulties in “reading others”; i.e., considering others’ point of view, making inferences, and understanding nonliteral language and nonverbal communication cues, such as facial expressions ( Banihani et al, 2015 ; Poysky, 2018 ).…”

Section: Introductionmentioning

confidence: 99%

Difficulties in social cognitive functioning among pediatric patients with muscular dystrophies

García,

Martínez,

López-Paz

et al. 2024

Front. Psychol.

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IntroductionPediatric muscular dystrophies (MDs) are a heterogeneous group of rare neuromuscular diseases characterized by progressive muscle degeneration. A neuropsychosocial approach is crucial for these patients due to associated cognitive, behavioral, and psychiatric comorbidities; however, the social cognitive domain has not been adequately addressed.MethodsThis study aimed to analyze on social cognition performance in a pediatric MD patient cohort. This cross-sectional study included 32 pediatric patients with MD and 32 matched-healthy controls. The Social Perception Domain of the NEPSY-II, the Reading the Mind in the Eyes Test–Child and Happé’s Strange Stories Test were administered. General intelligence and behavioral and emotional symptoms were controlled for to eliminate covariables’ possible influence. The assessments were performed remotely.ResultsChildren with MDs performed significantly worse on most of the social cognition tasks. The differences found between the groups could be explained by the level of general intelligence for some aspects more related to theory of mind (ToM) (TM NEPSY-II: F = 1.703, p = .197; Verbal task: F = 2.411, p = .125; RMET-C: F = 2.899, p = .094), but not for emotion recognition. Furthermore, these differences were also independent of behavioral and emotional symptoms.DiscussionIn conclusion, social cognition is apparently impaired in pediatric patients with MD, both for emotion recognition and ToM. Screening assessment in social cognition should be considered to promote early interventions aimed at improving these patient’s quality of life.

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“…Some studies indicate that children with SMA can manage their symptoms and life, such as resting at appropriate times, eating nutritious food, keeping warm in cold weather, or using aids to complete activities [9e12]. Others, however, assert that children with SMA show poor self-care ability, and patients with SMA types I, II, or III are often less able to perform daily self-care activities, such as dressing, bathing, and moving, when they are more physically paralyzed due to the disease [13,14]. Hence, it is necessary to further explore the self-care experience of children with SMA.…”

Section: Introductionmentioning

confidence: 99%

Self-care Experiences of Adolescents with Spinal Muscular Atrophy

Yang

Chung

Weng

et al. 2021

Asian Nursing Research

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We examined the self-care experiences of adolescents with spinal muscle atrophy (SMA) and their perceptions of the interactions between their body and the environment. Methods: We interviewed ten adolescents with SMA aged 13e18 years regarding personal care practices. Purposive sampling was conducted in two medical centers in northern Taiwan. Data were analyzed using the Giorgi analysis method. Results: Four constitutions were identified: (1) limited space for independent development, (2) multiple reconstructions of self-image to improve physical ability, (3) self-care of disease, and (4) developing activity styles to accommodate social culture. Conclusion:The self-care lived experiences of patients reflect dynamic changes in the body and environment. Self-existence was exhibited by adjustment, practice, and creativity of physical activity to integrate into society. Nursing staff should understand the self-care experiences and needs of adolescents with SMA to develop a database of self-care skills. This study recommended that nursing staff improve their ability to guide patients in taking care of themselves by developing body awareness self-care courses and individual care plans in response to various stages of disability to help patients delay deterioration, realize their physical potential, and promote independence and social development.

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Adaptive skills and mental health in children and adolescents with neuromuscular diseases

Cited by 11 publications

References 53 publications

Impact of COVID-19 pandemic on the psychosocial well-being of children with neuromuscular disorders

Impact of COVID-19 pandemic on the psychosocial well-being of children with neuromuscular disorders

Difficulties in social cognitive functioning among pediatric patients with muscular dystrophies

Self-care Experiences of Adolescents with Spinal Muscular Atrophy

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