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The Views of Informal Carers' Evaluation of Services (VOICES): Toward an adaptation for the New Zealand bicultural context

Published online by Cambridge University Press:  11 April 2016

Rosemary Frey ,
Lisa Williams ,
Gabriella Trussardi ,
Stella Black ,
Jackie Robinson ,
Tess Moeke-Maxwell  and
Merryn Gott
Rosemary Frey*
Affiliation:
Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand
Lisa Williams
Affiliation:
Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand
Gabriella Trussardi
Affiliation:
Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand
Stella Black
Affiliation:
Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand
Jackie Robinson
Affiliation:
Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand Auckland District Health Board, Auckland, New Zealand
Tess Moeke-Maxwell
Affiliation:
Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand
Merryn Gott
Affiliation:
Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand
*
Address correspondence and reprint requests to Rosemary Frey, School of Nursing, FMHS, University of Auckland, Private Bag 92019, Auckland, New Zealand. E-mail: r.frey@auckland.ac.nz.
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Abstract

Objective:

The Views of Informal Carers Experiences of Services (VOICES) instrument is a postal questionnaire that has been utilized internationally to capture the experiences of end-of-life care during the last months of life. Aotearoa/New Zealand, traditionally a bicultural society, reflects both the European worldview and that of the indigenous Māori. The Māori collectivist worldview considers whānau (extended family) support as key at the end of life and privileges “kanohi ki te kanohi” (face-to-face) meetings. In such a context, how will VOICES be received? Our pilot study was designed to test the effectiveness of an adaptation of the VOICES questionnaire in the New Zealand social setting for both Māori and non-Māori.

Method:

Cognitive interviews were conducted with 20 bereaved whānau and family members whose relative died between January 1 and April 4, 2014, in one urban New Zealand hospital. Thematic analysis was conducted on the resulting transcripts.

Results:

We found that, although the questionnaire provides valuable information, administration of the current questionnaire within a bicultural context is problematic. These problems are related to its scope, cultural acceptability, structure, and content. Distribution of the VOICES questionnaire, either through the post or online, without prior consultation, also risks engaging Māori in a culturally inappropriate manner.

Significance of results:

These findings will prompt revisions to both the content and research approach to implementing VOICES in a bicultural context. Recommendations include prior consultation with local indigenous communities as well as utilization of a mixed-methods approach to utilizing VOICES in a bicultural context. The cognitive interview procedures employed (adjusted for a collectivist worldview) in this study may also prove useful to indigenous groups seeking to develop or adapt questionnaires within a bicultural or multicultural context.

Keywords

Palliative careEthnicityBiculturalInformal carersQuestionnaire
Type
Original Articles
Information
Palliative & Supportive Care , Volume 15 , Issue 1 , February 2017 , pp. 67 - 76
Copyright
Copyright © Cambridge University Press 2016 

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References

REFERENCES

Addington-Hall, J. & McCarthy, M. (1995). Regional study of care for the dying: Methods and sample characteristics. Palliative Medicine, 9(1), 27–35.Google Scholar
Addington-Hall, J.M. & O'Callaghan, A.C. (2009). A comparison of the quality of care provided to cancer patients in the UK in the last three months of life in in-patient hospices compared with hospitals, from the perspective of bereaved relatives: Results from a survey using the VOICES questionnaire. Palliative Medicine, 23(3), 190–197.CrossRefGoogle ScholarPubMed
Addington-Hall, J., Walker, L., Jones, C., et al. (1998). A randomised controlled trial of postal versus interviewer administration of a questionnaire measuring satisfaction with, and use of, services received in the year before death. Journal of Epidemiology and Community Health, 52(12), 802–807.Google Scholar
Angelo, J. & Egan, R. (2014). Family caregivers voice their needs: A Photovoice study. Palliative & Supportive Care, 1–12.Google Scholar
Aspinal, F., Hughes, R., Dunckley, M., et al. (2006). What is important to measure in the last months and weeks of life?: A modified nominal group study. International Journal of Nursing Studies, 43, 363–403.CrossRefGoogle ScholarPubMed
Beccaro, M., Caraceni, A., Costantini, M., et al. (2010). End-of-life care in Italian hospitals: Quality of and satisfaction with care from the caregivers' point of view. Results from the Italian Survey of Dying of Cancer. Journal of Pain and Symptom Management, 39(6), 1003–1015.Google Scholar
Bee, P.E., Barnes, P. & Luker, K. (2009). A systematic review of information caregivers' needs in providing home-based end-of-life care to people with cancer. Journal of Clinical Nursing, 18(10), 1379–1393.CrossRefGoogle ScholarPubMed
Bishop, R. (2005). Freeing ourselves from neocolonial domination in research: A Kaupapa Māori approach to creating knowledge. In The Sage handbook of qualitative research, 3rd ed. Denzin, K. & Lincoln, Y.S. (eds.), pp. 109–138. Thousand Oaks, CA: Sage.Google Scholar
Bowling, A. (2005). Mode of questionnaire administration can have serious effects on data quality. Journal of Public Health, 27(3), 281–291.Google Scholar
Bowling, A. (2014). Research methods in health: Investigating health and health services. New York: McGraw-Hill Education.Google Scholar
Braun, V. & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.Google Scholar
Burt, J., Shipman, C., Richardson, A., et al. (2010). The experiences of older adults in the community dying from cancer and non-cancer causes: A national survey of bereaved relatives. Age and Ageing, 39(1), 86–91.Google Scholar
Callister, P., Didham, R. & Kivi, A. (2009). Who are we? The conceptualization and expression of ethnicity. In Official statistics research series, vol. 4, pp. 1–56. Wellington: Statistics New Zealand.Google Scholar
Cartwright, A., Hockey, L. & Anderson, J.L. (1973). Life before death. London: Routledge and Keegan Paul.Google Scholar
Cram, F. & Pipi, K. (2000). Māori/Iwi provider success: Report on the pilot project. Auckland: International Research Institute for Māori and Indigenous Education.Google Scholar
Crengle, S., Crampton, P. & Woodward, A. (2004). Māori in Aotearoa/New Zealand. In Accessing health care: Responding to diversity. Healy, J. & McKee, M. (eds.), chap. 15. New York: Oxford University Press.Google Scholar
Creswell, J.W., Plano, V.L., Gutmann, M.L., et al. (2002). Advanced mixed methods research designs. In Handbook of mixed methods in social and behavioral research. Tasgakkori, A. & Teddlie, C.B (eds.), pp. 209–240. Thousand Oaks, CA: Sage.Google Scholar
Dalziel, L. (2001). The New Zealand positive ageing strategy. Wellington: Ministry of Social Policy.Google Scholar
Daugherty, S.D., Harris-Kojetin, L., Squire, C., et al. (2001). Maximizing the quality of cognitive interviewing data: An exploration of three approaches and their informational contributions. In Proceedings of the annual meeting of the American Statistical Association. Available from https://www.amstat.org/sections/srms/proceedings/y2001/Proceed/00343.pdf.Google Scholar
Davey, H. & Gee, S. (2002). Life at 85 plus: A statistical review. Wellington: New Zealand Institute for Research on Ageing, Victoria, University of Wellington.Google Scholar
DeCourtney, C., Branch, P. & Morgan, K. (2010). Gathering information to develop palliative care in Alaska. Journal of Palliative Care 26(1) 22–31.Google Scholar
Denzin, N.K. & Lincoln, Y.S. (2008). Introduction: The discipline and practice of qualitative research. In Strategies of qualitative inquiry, 3rd ed. Denzin, N.K. & Lincoln, Y.S. (eds.), pp. 1–44. Thousand Oaks, CA: Sage.Google Scholar
Department of Health (2008). End-of-life care strategy: Promoting high-quality care for all adults at the end of life. London: HMSO. Available from https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/136431/End_of_life_strategy.pdf.Google Scholar
Doward., L.C., Mead, D.M., Thorsen, H. (2004). Requirements for quality of life instruments in clinical research. Value in Health, 7(Suppl. 1), S13–S16.Google Scholar
Duggleby, W., Kuchera, S., MacCleod, R., et al. (2015). Indigenous people's experiences at the end of life. Palliative & Supportive Care, 13(6), 1721–1733.Google Scholar
Durie, M.H. (1985). A Māori perspective of health. Social Science & Medicine, 20, 483–486.CrossRefGoogle ScholarPubMed
Elkington, H., White, P., Addington-Hall, J.M., et al. (2005). The healthcare needs of chronic obstructive pulmonary disease patients in the last year of life. Palliative Medicine, 19, 485–491.Google Scholar
Fink, J.W., Paine, S.J., Gander, P.H., et al. (2011). Changing response rates from Māori and non-Māori in national sleep health surveys. The New Zealand Medical Journal, 124(1328), 52–63.Google Scholar
Gesink, D., Rink, E., Montgomery-Andersen, R., et al. (2010). Developing a culturally competent and socially relevant sexual health survey with an urban, Arctic community. International Journal of Circumpolar Health, 69(1), 25–37. Available from http://ezproxy.auckland.ac.nz/login?url=http://search.proquest.com/docview/749216888?accountid=8424.Google Scholar
Gott, M., Allen, R., Moeke-Maxwell, T., et al. (2015). “No matter what the cost”: A qualitative study of the financial costs faced by family and whānau caregivers within a palliative care context. Palliative Medicine, 29(6), 518–528.Google Scholar
Hampton, M., Baydala, A., Bourassa, C., et al. (2010). Completing the circle: Elders speak about end-of-life care with Aboriginal families in Canada. Journal of Palliative Care, 26(1), 6.Google Scholar
Harrington, L. & Liu, J.H. (2002). Self-enhancement and attitudes toward high achievers: A bicultural view of the independent and interdependent self. Journal of Cross-Cultural Psychology, 33(1), 33–35.Google Scholar
Hooyman, N.R. & Kramer, B.J. (2006). Living through loss: Interventions across the life span. New York: Columbia University Press.Google Scholar
Hughes, R., Saleem, T. & Addington-Hall, J. (2005). Towards a culturally acceptable end-of-life survey questionnaire: A Bengali translation of VOICES. International Journal of Palliative Nursing, 11(3), 116–123.Google Scholar
Hunt, K.J., Shlomo, N., Richardson, A., et al. (2011). VOICES redesign and testing to inform a national end-of-life care survey. Available from https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/215503/dh_128825.pdf.Google Scholar
Ingleton, C., Morgan, J, Hughes, P., et al. (2004). Carer satisfaction with end-of-life care in Powys, Wales: A cross-sectional survey. Health & Social Care in the Community, 12(1), 43–52.Google Scholar
Johnston Taylor, E., Simmonds, S., et al. (2014). Māori perspectives on hospice care. Diversity and Equality in Health and Care, 11, 61–70.Google Scholar
Kellehear, A. (1993). The unobtrusive researcher: A guide to methods. Sydney: Allen & Unwin.Google Scholar
Lawrenson, R., Smyth, D., Kara, E., et al. (2010). Rural general practitioner perspectives of the needs of Māori patients requiring palliative care. The New Zealand Medical Journal, 123, 30–36.Google Scholar
Mann, S., Galler, D., William, P., et al. (2004). Caring for patients at the end of life: Withdrawal of intensive care in the patient's home. The New Zealand Medical Journal, 117, 1–8.Google Scholar
Marrone, S. (2007). Understanding barriers to health care: A review of disparities in health care services among indigenous populations. International Journal of Circumpolar Health, 66(3), 188–198.Google Scholar
Marshall, J. & Peters, M. (1989). Te reo o te tai Tokerau: The assessment of oral Māori. Journal of Multilingual and Multicultural Development, 10(6), 499–514.Google Scholar
McCarthy, M., Addington-Hall, J. & Altmann, D. (1997). The experience of dying with dementia: A retrospective study. International Journal of Geriatric Psychiatry, 12(3), 404–409.Google Scholar
McPherson, C.J. & Addington-Hall, J.M. (2004). How do proxies' perceptions of patients' pain, anxiety, and depression change during the bereavement period? Journal of Palliative Care, 20(1), 12–19.CrossRefGoogle ScholarPubMed
McWhinney, I.R., Bass, M.J. & Donner, A. (1994). Evaluation of a palliative care service: Problems and pitfalls. BMJ, 309, 1340–1342.Google Scholar
Ministry of Health (2001). The New Zealand palliative care strategy. Wellington: Ministry of Health.Google Scholar
Ministry of Health (2003). Implementing the New Zealand health strategy, 2003: The Minister of Health's third report on progress on the New Zealand health strategy. Wellington: Ministry of Health.Google Scholar
Ngata, P. (2005). Death, dying and grief: A Māori perspective. In Last words: Approaches to death in New Zealand's cultures and faiths. Schwass, M. (ed.), chap. 3. Wellington, NZ: Bridget Williams Books.Google Scholar
Nordhus, I. (2008). Manifestations of depression and anxiety in older adults. In Handbook of clinical psychology of ageing. Woods, R. & Clare, L. (eds.), pp. 97–110. Chichester, UK: Wiley Interscience.Google Scholar
O'Brien, V.A. (2012). Person-centered palliative care: A First Nations perspectives. Masters thesis. Hamilton, Ontario: McMaster University.Google Scholar
Office for National Statistics (2015). National statistics. London: Office for National Statistics.Google Scholar
Penney, L., Fieldhouse, W. & Kerr, S. (2009). Te Hononga a Te Hekenga o Te Rā: Connections at the going down of the sun: Improving Māori access to palliative care/Tapuhi Hunga Roku in Te Tai Tokerau. Kerikeri, NZ: Kiwikiwi Research and Evaluation Services.Google Scholar
Rinck, G.C., van den Bos, G.A., Keleijnen, J., et al. (1997). Methodologic issues in effectiveness research on palliative cancer care: A systematic review. Journal of Clinical Oncology, 15(4), 1697–1701.Google Scholar
Robson, B. & Harris, R. (2007). Hauora: Māori standards of health IV. A study of the years 2000–2005. Wellington: Te Ropu Rangahau Hauora a Eru Pomare.Google Scholar
Ryan, K., Gannon-Slater, N. & Culbertson, M.J. (2012). Improving survey methods with cognitive interviews in small-and-medium-scale evaluations. American Journal of Evaluation, 33(3), 414–430.Google Scholar
Seale, C. & Cartwright, A. (1994). The year before death. Aldershot, UK: Avebury.Google Scholar
Sim, J. & Wright, C. (2002). Research in health care: Concepts, designs, and methods. Cheltenham, UK: Nelson Thomes.Google Scholar
Smith, L.T. (1999). Decolonizing methodologies: Research and indigenous peoples. London: Zed Books.Google Scholar
Statistics New Zealand (2013). Demographic trends: 2012. Wellington: Statistics New Zealand.Google Scholar
Statistics New Zealand (2015). Classifications and Related statistical standards: Māori descent, vol. 2015, Wellington: Statistics New Zealand.Google Scholar
Steptoe, A., Freedland, K., Jennings, J.R., et al. (2010). Handbook of behavioral medicine. New York: Springer.Google Scholar
Tang, S.T. & McCorkle, R. (2002). Use of family proxies in quality-of-life research for cancer patients at the end of life: A literature review. Cancer Investigation, 20(7–8), 1086–1104.Google Scholar
Teno, J.M., Clarridge, B., Casey, V., et al. (2001). Validation of Toolkit After-Death Bereaved Family Member Interview. Journal of Pain and Symptom Management, 22(3), 752–758.Google Scholar
Teno, J.M., Clarridge, B.R., Casey, V., et al. (2004). Family perspectives on end-of-life care at the last place of care. The Journal of the American Medical Association, 291(1), 88–93.Google Scholar
Willis, G.B. (2005). Cognitive interviewing: A tool for improving questionnaire design. Thousand Oaks, CA: Sage.Google Scholar
Wilson, D. & Neville, S. (2009). Culturally safe research with vulnerable populations. Contemporary Nurse, 33, 60–79.Google Scholar
World Health Organization (2007). Global age-friendly cities project. Geneva: World Health Organization. Available from www.who.int./ageing/age_friendly_cities_network.Google Scholar
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