Abstract
Goals of work
The use of validated tools is increasingly accepted as an unqualified good that is viewed as best practice in supportive care. This article begins to explore the impact of standardized questionnaire use in supportive care by presenting findings from recent qualitative research on clients’ perceptions of the use of standardized assessment tools during their hospice experience.
Patients and methods
There were two arms to this phenomenological descriptive study: A. Interviews with hospice patients and their carers; B. Interviews with hospice staff. The results from arm A are reported in this article. This involved interviews with ten families (available patient and carer) who had hospice experience with questionnaires and ten families who were cared for without questionnaires. The interviews were audiorecorded, transcribed verbatim, and thematically analysed.
Main results
The research presented in this article is seminal work in the area which affirms significant concerns about the use of questionnaires in hospice practice. The evidence indicates the majority of clients dislike the use of questionnaires and points to questionnaire use being a practice built around staff, rather than client, needs. The findings also provide insight into the process of collusion by which hospice workers who are enthusiastic about the use of questionnaires can be led to believe, because of client gratitude, that the process is positive.
Conclusions
Questionnaires should not be seen as an unqualified good, and thus should not be automatically accepted as best practice within hospice or palliative care service provision.
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References
Abel E (1986) The hospice movement: institutionalising innovation, Int J Health Serv 16(1):71–85
Behel J, Rybarczyk B, Elliott T, Nicolas J, Nyenhuis D (2002) The role of perceived vulnerability in adjustment to lower extremity amputation: a preliminary investigation. Rehabil Psychol 47(1):92–105
Brown J, Sangster M, Swift J (1998) Factors influencing palliative care. Qualitative study of family physicians’ practices. Can Family Physician 44:1028–1034
Clark D (ed) (1993) The future of palliative care: issues of policy and practice. Open University Press, Milton Keynes, UK
Colaizzi P (1978) Psychological research as the phenomologist views it. In: Valle R, King M (eds) Existential–phenomenological alternatives in psychology. Oxford University Press, New York, pp 48–71
Department of Veterans’ Affairs http://www.dva.gov.au/health/ provider/community-nursing/pathways/pathindex.htm)
Elsey B (1998) Hospice and palliative care as a new social movement: a case illustration from South Australia. J Palliat Care 14(4):38–46
Grbich C (1999) Qualitative research in health. Allen & Unwin, St Leonards, NSW
Herth K (1991) Development and refinement of an instrument to measure hope. Sch Inq Nurs Pract 5(1):39–56
Herth K (1992) Abbreviated instrument to measure hope: development and psychometric evaluation. J Adv Nurs 17(10):1251–1259
Holloway I (1997) Basic concepts for qualitative research. Blackwell Science, Oxford
James N, Field D (1992) The routinization of hospice: charisma and bureaucratisation. Soc Sci Med 34:1363–1375
Jones A, Moga D, Davie K (1999) Transforming end-of-life care for the 21st century: the hospice vision. J Palliat Med 2(1):9–14
Krathwohl D (1993) Methods of educational and social science research: an integrated approach. Longman, New York
Maddocks I (1990) Changing concepts in palliative care. Med J Aust 171:63–64
Manning M (1984) The hospice alternative: living with dying, Souvenir, London
Maxwell J (1992) Understanding and validity in qualitative research. Harv Educ Rev 62(3):279–300
Mays N, Pope C (1995) Rigour and qualitative research. BMJ 311:109–112
McGrath P, Wilson M (2002) Assessing hospice client satisfaction: a qualitative approach. Prog Palliat Care 10(1):3–8
McGrath P (1998) A spiritual response to the challenge of routinization: a dialogue of discourses in a Buddhist-initiated hospice. Qual Health Res 8(6):801–812
McGrath P (2001) Keeping the hospice spirit alive in client satisfaction surveys. J Palliat Care 17(2):78–84
McGrath P (2000) Who are our clients? A descriptive profile of a community-based Buddhist hospice. Am J Hosp Palliat Care 17(3):178–184
McGrath P (2002) New horizons in spirituality research. In: Rumbold B (ed) Spirituality and palliative care. Oxford University Press, Oxford, pp 178–194
Palliative Care Australia (1999) Standards for palliative care provision, 3rd edn. Yarralumla, ACT
Payne S, Smith P, Dean S (1999) Identifying the concerns of informal carers in palliative care. Palliat Med 13(1):37–44
Paradis L, Cummings S (1986) The evolution of hospice in America towards organizational homogeneity. J Health Soc Behav 27:370–386
Polit D, Hungler B (1995) Nursing research: principles and methods, 5th edn. Lippincott, Philadelphia
Rinaldi A, Kearl M (1990) The hospice farewell: ideological perspectives of its professional practitioners. Omega 21:283–300
Saunders C (1998) In: Doyle D, Hanks G, MacDonald N (eds) Oxford textbook of palliative medicine, 2nd edn. Oxford University Press, Oxford, pp v–ix
Schroevers M, Sanderman R, van-Sonderen E, Ranchor A (2000) The evaluation of the Center for Epidemiologic Studies Depression (CES-D) scale: depressed and positive affect in cancer patients and healthy reference subjects. Qual Life Res 9(9):1015–1029
Siebold C (1992) The hospice movement: easing death’s pains. Twayne, New York
Spiegelberg H (1975) Doing phenomenology. Nijhoff, The Hague
Streubert J, Carpenter D (1995) Qualitative research in nursing: advancing the humanistic imperative, Lippincott, Philadelphia
Super A, Plutko L (1996) Danger signs. Coalition points to causes and consequences of inadequate care of the dying. Health Prog 77(2):50–54
Wald FS, Zoster Z, Wald HJ (1980) The hospice movement as a health care reform. Nurs Outlook 28(3):173–178
Acknowledgements
I would like to thank Mrs Elaine Phillips for her work transcribing the audiotapes for this project.
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McGrath, P., Moore, A., McNaught, M. et al. Another form to fill in! Clients’ reflections on the hospice use of questionnaires. Support Care Cancer 13, 691–701 (2005). https://doi.org/10.1007/s00520-005-0795-6
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DOI: https://doi.org/10.1007/s00520-005-0795-6