Bravington, Alison

Brooks, Joanna

Hardy, Beth

King, Nigel

Melvin, Jane

English

University of Huddersfield Repository

University of Huddersfield RepositoryBrooks, Joanna, Bravington, Alison, Hardy, Beth, Melvin, Jane and King, NigelUndertaking qualitative research into end of life care in the home environmentOriginal CitationBrooks, Joanna, Bravington, Alison, Hardy, Beth, Melvin, Jane and King, Nigel (2015) Undertaking qualitative research into end of life care in the home environment. In: Qualitative Methods in Psychology (QMiP) Conference 2015, 2nd - 4th September 2015, Anglia Ruskin University, Cambridge. (Unpublished) This version is available at http://eprints.hud.ac.uk/25558/The University Repository is a digital collection of the research output of theUniversity, available on Open Access. Copyright and Moral Rights for the itemson this site are retained by the individual author and/or other copyright owners.Users may access full items free of charge; copies of full text items generallycan be reproduced, displayed or performed and given to third parties in anyformat or medium for personal research or study, educational or not-for-profitpurposes without prior permission or charge, provided:• The authors, title and full bibliographic details is credited in any copy;• A hyperlink and/or URL is included for the original metadata page; and• The content is not changed in any way.For more information, including our policy and submission procedure, pleasecontact the Repository Team at: E.mailbox@hud.ac.uk.http://eprints.hud.ac.uk/Undertaking qualitative research into end of life care in the home environmentJo Brooks, Alison Bravington, Beth Hardy, Jane Melvin and Nigel KingBackground• 75% of people say they would prefer to die at home (Department of Health, 2013)• Number of people dying at home is increasing (42% in 2011), but over half of deaths still occur in hospitals (Department of Health, 2013)• Too many people are not getting high quality care at the end of their life (ONS, 2014; Choice in EoLC Programme Board, 2015)What is a ‘good death’?Being without painReceiving high quality care from good staffBeing with close family or friends Being treated with respectBeing in a familiar place Having involvement in and control over care decisionsHaving access to the right services at the right timeHaving significant others involved in care and supportedHaving support for physical, emotional, social and spiritual needsIssues for qualitative researchers doing research into end of life care• Challenges investigating patient experiences• Challenges investigating significant other experiences• Complex nature of care (Queens Nursing Institute, 2011)• Visual research method that involves the creation of a chart that forms the basis of research interview• Encourages participant to reflect on, and communicate their experiences with the researcherOur solution:  The Pictor technque (King et al, 2013)Our study• Part of a larger research project evaluating a specialist service providing home-based care for patients at the end of life• Participants: (1) 30 staff and volunteers from the service; (2) 21 patients and carers receiving treatment and/ or care and support from the service; (3) 18 health and social care professionals involved in working with the service• Individual interviews incorporating Pictor conducted with all participants Example of a Pictor chart -patientExample of a Pictor chart -carerData Analysis• We used Template Analysis (e.g. Brooks et al, 2015) to analyse our data• Advantages:– Able to handle our (large) data set– An appropriate fit for our choice of approach (drawing on constructivist tradition)– Allowed analysis to proceed in parallel with data collection– Facilitated team analysis– Allowed us to develop a useful integrative theme(Simplified) final template 1.  How does the Service work with external services?   1.1 Policies, procedures and documentation  1.2 Understanding and negotiating who does what    1.3 Dealing with power and hierarchy   2.  How does the Service work with patients and carers?  2.1 Genuinely holistic services provided for patients and carers  2.2 Finding ways in  2.3  2.4   Building up relationships  Patient/Carer awareness and utilisation of services available   3.  Future directions  A.1 Integrative theme – what makes the Service special?          A.1.1 Complex interventions              A.1.2 In-house consultant operating in the community           A.1.3 Service team dynamic          A.1.4 Filling service gaps          A.1.5 Prevents admission to hospital      A.1.6 Reliance on volunteers  A.1.7 Getting in early  A.1.8 The Service Centre/clinic settingFindings• Caring for a loved one at home acknowledged as draining…• …but participants were effusive about the excellent at-home professional support they were receivingSome days I just feel as though I want to get in the car and go, drive til the petrol runs out, doesn’t matter where I drive to, as long as I’m away from it all, let someone else deal with it, you know[The service] has been outstanding… it’s been wonderful to have them, it really has … they go out of their way to try to do more than they’re specifically here to do Medicine is worried about the tumour, that’s what they’re interested in… [the service staff member] comes into it because she looks after our sort of total beingFindings cont.• Genuinely holistic care evidently recognised needs of both patients and carers• Effective co-ordination of care especially appreciatedWhen it was all first started, I felt I was being pulled from pillar to post by everybody, I didn’t feel anybody was in charge of my treatment.  Because I had him doing one thing, the doctor doing something else, I had the district nurse doing – I had lots of care, but too much…and I just wanted somebody if you like to co-ordinate the whole thing.  And I think [this service] sort of more or less filled thatMy wife trusts her too and I think that’s important because if anything did decide to go wrong I would like to feel like she had got somebody that she knew quite well and that she could talk to and if the worst came to the worst, you know, she’d be there afterwards as wellConclusions• Need for sufficient well-resourced palliative care services available in community to support patients and their families at end of life• Care co-ordination emerged as a key concern• Recent independent report emphasises need for care co-ordinators and importance of care in community settings and suggests such care should be available 24/7 from 2020 [Choice in End of Life Care Programme Board, 2015]• Pictor is a useful means for qualitative researchers to explore experiences from perspective of patients and family members, enabling detailed insight into individual experiences of end of life care (Noble et al, 2014; Hardy et al, 2014)References- Brooks, J., McCluskey, S., Turley, E. and King, N. (2015). The Utility of Template Analysis in Qualitative Psychology Research. Qualitative Research in Psychology, 12(2), pp. 202-222. - Choice in End of Life Care Programme Board (2015). What’s important to me: a review of choice in end of life care.  Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/407244/CHOICE_REVIEW_FINAL_for_web.pdf- Department of Health (2013). 2010 to 2015 government policy: end of life care.  Available at: https://www.gov.uk/government/publications/2010-to-2015-government-policy-end-of-life-care- Hardy, B., King, N. and Rodriguez, A. (2014).  The experiences of patients and carers in the daily management of care at the end of life. International Journal of Palliative Nursing , 20 (12), pp. 591-598.- King, N., Bravington, A., Brooks, J., Hardy, B., Melvin, J. and Wilde, D. (2013).  The Pictor Technique: A Method for Exploring the Experience of Collaborative Working. Qualitative Health Research, 23 (8), pp. 1138-1152.- Noble, B., King, N., Woolmore, A., Hughes, P., Winslow, M., Melvin, J., Brooks, J., Bravington, A., Ingleton, C. and Bath, P. (2014).  Can comprehensive specialised end-of-life care be provided at home? Lessons from a study of an innovative consultant-led community service in the UK.  European Journal of Cancer Care, pp. 253-266.- Queen’s Nursing Institute (2011). Nursing People in the Home - The issues, the stories, the actions. London: The Queen’s Nursing Institute.AcknowledgementsGrateful thanks to all our participants.The work described here was part of a larger evaluation undertaken for Macmillan Cancer Support by the authors and colleagues from the University of Sheffield.

Can comprehensive specialised end-of-life care be provided at home? Lessons from a study of an innovative consultant-led community service in the UK.

Nursing Institute (2011). Nursing People in the Home - The issues, the stories, the actions. London: The Queen’s Nursing Institute.

The Pictor Technique: A Method for Exploring the Experience of Collaborative Working.

Undertaking qualitative research into end of life care in the home environment

Undertaking qualitative research into end of life care in the home environment

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