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Exploration and development of self-management strategies for people with intellectual disabilities who have asthma.


Project Description

Respiratory disorders are one of the leading causes of death in people with intellectual disabilities (PWID) (O’Leary et al., 2018). Asthma is a respiratory disorder that is more prevalent in PWID than in the general population (Gale et al 2009) - nearly double the rate of frequency (9.2% versus 5.3%, Cooper et al, 2017). PWID also have higher hospital admissions for asthma compared to the general population (Balogh, 2010; Dunn et al, 2018).

It is recommended that those living with asthma are supported to self-manage their condition (SIGN 2016). Effective asthma management requires a good knowledge of asthma, its triggers and treatment including correct inhaler technique, an ability to recognise worsening asthma and use of an asthma action plan (SIGN 2016, Erickson et al., 2018). For PWID promoting asthma self-management is challenging as they are likely to have other issues, such as mental ill-health, obesity and gastro-oesophageal reflux, which also need managed. PWID also rely on carers to help them self-manage their health. Carers tend to be family members or support workers rather than qualified health professionals therefore both PWID and their caregivers need asthma education and training (Davis et al 2016, Erickson et al., 2018) with the availability of specially tailored educational resources.
Despite the poorer asthma outcomes for PWID and the additional challenges they face in terms of asthma self-management, little is known about how PWID and their carers view and manage asthma. As PWID are usually excluded from research studies, there is also a lack of evidence in relation to techniques and strategies recommended for their asthma management although some research has been recently conducted on inhaler use showing significant improvements after education/training (Davis et al. 2016). Research undertaken in the general population has indicated that written action plans improve clinical outcomes for those with asthma as they help people respond to worsening asthma. Asthma action plans have been recommended internationally for over 20 years and pictorial asthma action plans are acceptable for individuals from diverse cultural and educational backgrounds (Roberts et al, 2009) but it is not known how these could be used by PWID or their carers. It is also known that people living with asthma and their carers should be involved in personalising their asthma action plans and tailoring the plans for each individual (Ring et al. 2011). However, how those with ID could be facilitated to co-produce their asthma plans has never been investigated.

We are proposing a two phased mixed methods doctoral study to address this gap. Phase 1 could explore: (i) PWID’s and caregivers’ views, knowledge and experiences of asthma, for example awareness of environmental triggers for asthma and, (ii) their support needs in order to self-manage asthma. Phase 1 could be completed using interviews, focus groups and/or surveys. The use of specific methods could depend on the candidate’s interests and intended focus of the project. Phase 2 could inform development and co-production of a personalised asthma self-management action plan for use by those with ID and their carers. This doctoral project provides a unique opportunity to contribute to a respiratory programme of research focusing on those with ID that is being developed at Edinburgh Napier University (ENU). The supervisory team consists of those with a background of working with PWID (Dr Lisa O’Leary) and in the use of asthma action plans (Dr Nicola Ring and Dr Nicola Roberts) and is a collaboration between ENU and Glasgow Caledonian University.

Academic qualifications
A first degree (at least a 2.1) ideally in a health or social care discipline with a good fundamental knowledge of qualitative research methods.
English language requirement
IELTS score must be at least 6.5 (with not less than 6.0 in each of the four components). Other,equivalent qualifications will be accepted. Full details of the University’s policy are available online.
Essential attributes:
• Experience of fundamental qualitative research methods
• Competent in literature searching
• Knowledge of and experience of working with vulnerable groups and/or individuals with
communication difficulties such as PWID, pre-school children, individuals with dementia etc.
• Good written and oral communication skills
• Strong motivation, with evidence of independent research skills relevant to the project
• Good time management
Desirable attributes:
• Knowledge and/or experience of working with individuals with respiratory conditions such as
asthma
• MSc in research methods or similar postgraduate qualification
• Experience of using qualitative and/or quantitative research methods such as surveys,
questionnaires, interviews or focus groups
• Experience of using quantitative and/or qualitative data analysis software such as NVivo and/or
SPSS

Funding Notes

This is an unfunded position.

References

Balogh, R. S., Ouellette-Kuntz, H., Brownell, M., & Colantonio, A. (2011).
Ambulatory care sensitive conditions in persons with an intellectual
disability–development of a consensus. Journal of Applied Research in
Intellectual Disabilities, 24(2), 150–158.
Scottish Inter-collegiate Guidelines Network (2016) British guideline on the
management of asthma SIGN 53. NHS Healthcare Improvement Scotland,
Edinburgh.
Cooper S-A, Hughes-McCormack L, Greenlaw N, et al (2017). Management
and prevalence of long- term conditions in primary health care for adults
with intellectual disabilities compared with the general population: A
population- based cohort study. Journal of Applied Research in Intellectual
Disabilities;00:1–14. https://doi.org/10.1111/jar.12386
Davis,S., Durvasula, S.,Merhi,D.Young, P.Traini, D & Bosnic-Anticevich, S.
(2016) The ability of people with intellectual disability to use inhalers – an
exploratory mixed methods study, Journal of Asthma, 53:1, 86-93, DOI:
10.3109/02770903.2015.1065423
Dunn, K, Hughes‐McCormack, L, Cooper, S‐A. (2018). Hospital admissions
for physical health conditions for people with intellectual disabilities:
Systematic review. Journal of Applied Research in Intellectual Disabilities,
31(Suppl. 1): 1– 10. https://doi.org/10.1111/jar.12360
Erickson SR, Juncaj S, Buckley C. Family caregivers of people who have
intellectual/ developmental disabilities and asthma: Caregiver knowledge of
asthma self- management concepts— A pilot study. British Journal of
Learning Disabilities. 2018;46:172–181. https://doi.org/10.1111/bld.12223
O'Leary, L., Cooper, S-A & Hughes‐McCormack, L. (2018) Early death and
causes of death of people with intellectual disabilities: A systematic review.
Journal of Applied Research in Intellectual Disabilities 31: 325–342.
Ring, N., Malcolm, C., Wyke, S., Macgillivray, S., Dixon, D., Hoskins, G.,
Pinnock H., Sheikh, A. (2007). Promoting the use of Personal Asthma Action
Plans: a systematic review. Primary Care Respiratory Journal 16(5), 271–
283. doi:10.3132/pcrj.2007.00049
Ring, N. Jepson R, Hoskins G, Wilson C, Pinnock H, Sheikh A, Wyke S. (2011)
Understanding asthma action plan promotion and use: A systematic review
and synthesis of the qualitative literature. Patient Education and Counselling
85(2) e131-e143.
Roberts NJ, et al. (2008). The development and comprehensibility of a
pictorial asthma action plan Patient Education and
Counselling,doi:10.1016/j.pec.2008.07.04

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