What is important to measure in the last months and weeks of life?: A modified nominal group study

Aspinal, Fiona; Hughes, Rhidian; Dunckley, Maria; Addington‐Hall, Julia

doi:10.1016/j.ijnurstu.2005.06.005

Cited by 77 publications

(70 citation statements)

References 19 publications

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“…The NGT has been previously used successfully with groups of two to nine people with aphasia (Garcia, Laroche, & Barrette, 2002;Lomas, Pickard, & Mohide, 1987). Studies using the NGT have reported increased difficulty in prioritisation as group numbers increase (Aspinal, Hughes, Dunckley, & Addington-Hall, 2006;Vella, Goldfrad, Rowan, Bion, & Black, 2000), accordingly group size was capped at a maximum of six people.…”

Section: Methodsmentioning

confidence: 99%

Which outcomes are most important to people with aphasia and their families? an international nominal group technique study framed within the ICF

Wallace

Worrall

Rose

et al. 2016

Disability and Rehabilitation

191

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This is the accepted version of the paper.This version of the publication may differ from the final published version. Permanent repository link:http://openaccess.city.ac.uk/15003/ Link to published version: http://dx.doi.org/10. 1080/09638288.2016.1194899 Copyright and reuse: City Research Online aims to make research outputs of City, University of London available to a wider audience. Copyright and Moral Rights remain with the author(s) and/or copyright holders. URLs from City Research Online may be freely distributed and linked to. City Research Online: http://openaccess.city.ac.uk/ publications@city.ac.uk City Research OnlineAbstract Purpose: To identify important treatment outcomes from the perspective of people with aphasia and their families using the ICF as a frame of reference. Methods:The nominal group technique was used with people with aphasia and their family members in seven countries to identify and rank important treatment outcomes from aphasia rehabilitation. People with aphasia identified outcomes for themselves; and family members identified outcomes for themselves and for the person with aphasia. Outcomes were analysed using qualitative content analysis and ICF linking.Results: A total of 39 people with aphasia and 29 family members participated in one of 16 nominal groups. Inductive qualitative content analysis revealed the following six themes: (1) Improved communication; (2) Increased life participation; (3) Changed attitudes through increased awareness and education about aphasia; (4) Recovered normality; (5) Improved physical and emotional well-being; and (6) Improved health (and support) services.Prioritised outcomes for both participant groups linked to all ICF components; primarily Activity/Participation (39%) and Body Functions (36%) for people with aphasia, and Activity/Participation (49%) and Environmental Factors (28%) for family members.Outcomes prioritised by family members relating to the person with aphasia, primarily linked to Body Functions (60%). Conclusions:People with aphasia and their families identified treatment outcomes which span all components of the ICF. This has implications for research outcome measurement and clinical service provision which currently focuses on the measurement of Body Function outcomes. The wide range of desired outcomes generated by both people with aphasia and their family members, highlights the importance of collaborative goal setting within a familycentred approach to rehabilitation. These results will be combined with other stakeholder perspectives to establish a core outcome set for aphasia treatment research. Achieving outcomes that are important to consumers is a key factor in maximising the value of healthcare (Porter & Lee, 2013). This conceptualisation of value reflects a broader shift in health care towards person-centred services which seek to meet individual needs in holistic ways (World Health Organization., 2007). In aphasia rehabilitation, the value of measuring consumer-important outcomes has steadily gained momentum in ...

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Section: Methodsmentioning

confidence: 99%

Which outcomes are most important to people with aphasia and their families? an international nominal group technique study framed within the ICF

Wallace

Worrall

Rose

et al. 2016

Disability and Rehabilitation

191

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show abstract

“…It is usual for participants to be asked to identify issues before attending the NGT session. However, as Aspinal et al (2006) discuss, in studies where sensitive issues may be raised, it is preferable to modify the NGT to limit prior preparation. Thus, all ideas were generated within the group to reflect the particular needs of the participants.…”

Section: Methodsmentioning

confidence: 99%

The research priorities of patients attending UK cancer treatment centres: findings from a modified nominal group study

et al. 2007

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Members of the public are increasingly consulted over health care and research priorities. Patient involvement in determining cancer research priorities, however, has remained underdeveloped. This paper presents the findings of the first consultation to be conducted with UK cancer patients concerning research priorities. The study adopted a participatory approach using a collaborative model that sought joint ownership of the study with people affected by cancer. An exploratory, qualitative approach was used. Consultation groups were the main method, combining focus group and nominal group techniques. Seventeen groups were held with a total of 105 patients broadly representative of the UK cancer population. Fifteen areas for research were identified. Top priority areas included the impact cancer has on life, how to live with cancer and related support issues; risk factors and causes of cancer; early detection and prevention. Although biological and treatment related aspects of science were identified as important, patients rated the management of practical, social and emotional issues as a higher priority. There is a mismatch between the research priorities identified by participants and the current UK research portfolio. Current research activity should be broadened to reflect the priorities of people affected by the disease.

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“…However, specific domains related to the end of life are not explored, such as Quality of care, Preparation for death, Spirituality or Transcendence [10][11][12][13][14]18].…”

Section: Introductionmentioning

confidence: 99%

Report on the First Stages in the Translation of Measures of Health-Related Quality of Life at the End of Life

JM¹

2014

J Palliat Care Med

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What is important to measure in the last months and weeks of life?: A modified nominal group study

Cited by 77 publications

References 19 publications

Which outcomes are most important to people with aphasia and their families? an international nominal group technique study framed within the ICF

Which outcomes are most important to people with aphasia and their families? an international nominal group technique study framed within the ICF

The research priorities of patients attending UK cancer treatment centres: findings from a modified nominal group study

Report on the First Stages in the Translation of Measures of Health-Related Quality of Life at the End of Life

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