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Perry M1, Jones B2, Devan H1, Ingham T2, Neill A2
1University of Otago, Centre for Health, Activity and Rehabilitation Research, Wellington, New Zealand, 2University of Otago, Medicine, Wellington, New Zealand
Background: Genetic neuromuscular disorders (gNMD) are an important cause of respiratory failure. Community-based non-invasive ventilation (NIV) is a treatment for chronic respiratory failure shown to result in fewer chest infections, improvement in quality of life, higher likelihood of maintaining employment, and, for some conditions, increased survival. Recent research has revealed significant variation in both population prevalence, and unmet need for NIV by State and Health Boards among adults with gNMD.
Purpose: The aim of this qualitative study was to explore perspectives of Australasian (Australia and New Zealand) health professionals providing NIV services to people with gNMD to generate hypotheses of why variations in service provision might exist.
Methods: A semi-structured interview guide, exploring the prescribing and provision of NIV to people with g(NMD), was developed from literature review and pilot interviews with experienced Australasian health professionals. Focus groups were conducted at the Australasian Sleep DownUnder conference (2017). Participants were included if they were a health professional routinely providing support/service to people with gNMD requiring NIV in Australasia. Interviews were reordered and transcribed verbatim. A general inductive approach was used to analyse the qualitative data and a Health Care Equity Systems framework was used to organise the data. Preliminary results were circulated to participants and researchers working in this area in Australasia.
Results: A total of 23 participants were recruited: 14 female, and 9 male with an age range of 28-65 years. Included were respiratory physicians, nurses, physiotherapists and a physiologist. Four focus groups were conducted with five to eight participants in each; two groups with New Zealand and two with Australian health professionals. Regardless of country of practice, issues were reported across the three areas of:
Health System; Health Organisations; and Health Practitioners.
Health System issues included a lack of designated funding resulting in ad hoc access to care and provision of NIV, perceived regional variations between providers and education of health professionals.
Health Organisation issues included unstructured care pathways between transition points (i.e. paediatric to adult services and between tertiary and primary care), insufficient machines to meet required need, variation in the provision of battery back-up and organisational maintenance of machines (including education for community maintenance) and low staff ratios.
Health Practitioners described limited multi-disciplinary collaboration, limited delivery of person or whānau/family centred care, and variable knowledge of the role of NIV in g(NMD) (i.e. palliative versus quality of life preserving).
Conclusion(s): Constraints within all levels of the Health Care Equity framework are perceived to impact best practice care in the provision of NIV in gNMD in Australasia.
Implications: Leadership, knowledge and commitment is required to ensure equity of NIV provision to people with gNMD in Australasia. For example: leadership via the establishment of legislative, regulatory and policy frameworks; knowledge via the development of specific health equity measures that can support performance improvement and monitoring frameworks; and commitment via performance data being stratified and analysed by ethnicity, deprivation, age, gender, type of gNMD and location, and being made publicly available may influence outcomes at the Health Systems level.
Keywords: Neuromuscular disorders, Non-invasive ventilation, Health Care Equity framework
Funding acknowledgements: Funding for this study gratefully received from the Muscular Dystrophy Association of New Zealand.
Purpose: The aim of this qualitative study was to explore perspectives of Australasian (Australia and New Zealand) health professionals providing NIV services to people with gNMD to generate hypotheses of why variations in service provision might exist.
Methods: A semi-structured interview guide, exploring the prescribing and provision of NIV to people with g(NMD), was developed from literature review and pilot interviews with experienced Australasian health professionals. Focus groups were conducted at the Australasian Sleep DownUnder conference (2017). Participants were included if they were a health professional routinely providing support/service to people with gNMD requiring NIV in Australasia. Interviews were reordered and transcribed verbatim. A general inductive approach was used to analyse the qualitative data and a Health Care Equity Systems framework was used to organise the data. Preliminary results were circulated to participants and researchers working in this area in Australasia.
Results: A total of 23 participants were recruited: 14 female, and 9 male with an age range of 28-65 years. Included were respiratory physicians, nurses, physiotherapists and a physiologist. Four focus groups were conducted with five to eight participants in each; two groups with New Zealand and two with Australian health professionals. Regardless of country of practice, issues were reported across the three areas of:
Health System; Health Organisations; and Health Practitioners.
Health System issues included a lack of designated funding resulting in ad hoc access to care and provision of NIV, perceived regional variations between providers and education of health professionals.
Health Organisation issues included unstructured care pathways between transition points (i.e. paediatric to adult services and between tertiary and primary care), insufficient machines to meet required need, variation in the provision of battery back-up and organisational maintenance of machines (including education for community maintenance) and low staff ratios.
Health Practitioners described limited multi-disciplinary collaboration, limited delivery of person or whānau/family centred care, and variable knowledge of the role of NIV in g(NMD) (i.e. palliative versus quality of life preserving).
Conclusion(s): Constraints within all levels of the Health Care Equity framework are perceived to impact best practice care in the provision of NIV in gNMD in Australasia.
Implications: Leadership, knowledge and commitment is required to ensure equity of NIV provision to people with gNMD in Australasia. For example: leadership via the establishment of legislative, regulatory and policy frameworks; knowledge via the development of specific health equity measures that can support performance improvement and monitoring frameworks; and commitment via performance data being stratified and analysed by ethnicity, deprivation, age, gender, type of gNMD and location, and being made publicly available may influence outcomes at the Health Systems level.
Keywords: Neuromuscular disorders, Non-invasive ventilation, Health Care Equity framework
Funding acknowledgements: Funding for this study gratefully received from the Muscular Dystrophy Association of New Zealand.
Topic: Cardiorespiratory; Service delivery/emerging roles
Ethics approval required: Yes
Institution: University of Otago
Ethics committee: The Human Ethics Committee (Health)
Ethics number: H17/055
All authors, affiliations and abstracts have been published as submitted.
