Parent Carer Quality of Life and Night-Time Attendance in Non-Ambulant Youth with Neuromuscular Disorders

ABSTRACT

Purpose: To describe and explore carer quality of life (QoL) and night-time attendance to their child in parents of non-ambulant youth with Neuromuscular Disorders.

Methods: A cross-sectional population-based, comprehensive survey including the Adult Carer QoL (AC-QoL) questionnaire, measures of social context and youths’ physical status. Associations between carer-QoL or frequency of parents’ night-time attendance with independent variables were explored using linear and logistic regression models, respectively.

Results: Parents’ perceived lower carer-QoL (mean 76.5/120, SD 18.5) when they attended to their child twice a night or more (n = 17/35) and with shorter time since their child was prescribed noninvasive ventilation (NIV). Parental night-time attendance was not associated with youth’s actual use of NIV, but was more likely when youth required assistance to turn in bed, reported frequent sleep discomfort and had more severe joint contractures.

Conclusions: To optimize parent carer-QoL, interventions must address parents’ frequency of night-time attendance and youths’ sleep comfort.

KEYWORDS:

• Neuromuscular disorders
• parent carer quality of life
• youth
• sleep
• noninvasive ventilation

Contributors

VT conceptualized and VT, SP, JD and AW designed the study. VT was responsible for acquisition of data, preparation and revision of the manuscript. All listed authors were involved in data analysis, preparation and critical revision of the manuscript.

Ethics approval: The University Notre Dame Australia [014122F], Princess Margaret Hospital for Children [2014103EP], the Women’s and Children’s Health Network [HREC/15/WCHN/23], the Sydney Children’s Hospital Network [HREC.15.SCHN.194] and Children’s Health Queensland [HREC/16/QRCH/31]).

Acknowledgments

The authors would like to sincerely thank the young people, their parents and families who participated in the MyLifeMyVoice Teen NMD study. We gratefully acknowledge funding support through the Sir Harold and Sylvia Rowell PhD Scholarship, Muscular Dystrophy Western Australia and PhD top up scholarship of the Collaborative Research Network, University of Notre Dame Australia. We acknowledge the assistance of clinical and administrative staff who enabled recruitment via the patient organizations (Muscular Dystrophy Western Australia, Muscular Dystrophy Association of South Australia, Muscular Dystrophy New South Wales, Muscular Dystrophy Queensland, Muscular Dystrophy Australia Ltd, Save our Sons Duchenne Foundation, Spinal Muscular Atrophy Association Australia, Muscular Dystrophy Association of New Zealand) and children’s hospital neuromuscular clinics (Perth Children’s Hospital, The Women’s and Children’s Hospital, Sydney Children’s Hospital, The Children’s Hospital at Westmead, Royal North Shore Hospital, Lady Cilento Children’s Hospital).

Disclosure Of Interests

The authors report no conflict of interest.

Disclosure Statement

The funders of this research have had no roles in the study design, data collection, data analysis, manuscript preparation, and/or publication decisions. No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by a Sir Harold and Sylvia Rowell PhD Scholarship of the Muscular Dystrophy Association of Western Australia; and the Collaborative Research Network of The University of Notre Dame Australia.