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Coping Strategies Used by Children Living With a Genetic Muscular Disorder in New Zealand

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Thesis(1.24 MB)

Date

2020

Authors

Supervisor

Jones, Kelly
Bright, Charmaine

Item type

Thesis

Degree name

Master of Health Science

Journal Title

Journal ISSN

Volume Title

Publisher

Auckland University of Technology

Abstract

Objective: Children living with a genetic muscle disorder (GMD) report significant impairments in health-related quality of life (HRQOL) as a result of living with a chronic and progressive disorder. The challenges posed by living with a GMD may lead to additional and increasing daily stressors for these children and their families/whanau. Children use a range of coping strategies in an effort to respond to such stressors. Currently, however, limited literature is available regarding the use of coping strategies in children living with a GMD. The literature that is available focuses predominantly on a single GMD - Duchenne muscular dystrophy. This study sought to explore self-reported use and perceived effectiveness of coping strategies among children across a range of GMD and to identify associations with HRQOL. Method: The study examines secondary data collected as part of a nationwide, epidemiological study of the prevalence and impact of GMDs in NZ (MD-PREV). This sub-study involved 48 children (aged 5 to 15 years); 29 (60.4%) were male participants. Children were invited to complete the Kidcope and Paediatric Quality of Life questionnaires as part of the initial impact assessment. Inclusion in this sub-study required a clinical confirmation of a GMD, this included muscular dystrophy, congenital myopathy and ion channel muscle disorders. Results: Cognitive restructuring (n = 34) and wishful thinking (n = 34) were the most commonly used coping strategies, whereas, social support (a lot, 75.00%), resignation (a lot, 55.60%), and distraction (a lot, 50.00%) were perceived as the most effective coping strategies. Positive coping strategies (M = 2.36, SD = .64; p < .01) were perceived to be more effective compared to negative coping strategies (M = 2.07, SD = .77; p < .01). There were no significant associations between the types of coping strategies used and children’s age, sex, or ethnicity (p >.05). Total number of positive (p < .01) and negative (p < .01) coping strategies used, along with ethnicity (p < .05), significantly accounted for 49% of total variance observed in self-reported HRQOL (p < .01). Sex and age were also included in the model, however, did not contribute significantly to variance seen in HRQOL (p > .05). Lower total HRQOL was significantly associated with the increased use of both positive and negative coping strategies (p < .01) Conclusions: Study findings suggest that children use a range of positive and negative coping strategies when living with a GMD. While children reported positive coping strategies as more effective than negative strategies, results suggest that childrens use of a greater number of different coping strategies is associated with poorer self-reported HRQOL. Children living with a GMD may benefit from psychoeducation around how to use coping strategies effectively. Increased education for children, and their families/whanau, may help them to better cope with stressors related to their health condition.

Description

Keywords

Coping strategies children living genetic muscular disorder, Coping strategies, Children, Genetic muscular disoders, Duchenne muscular dystrophy, Dystrophies

Source

DOI

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Permanent link

https://hdl.handle.net/10292/13233

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Masters Theses