Hostname: page-component-586b7cd67f-l7hp2 Total loading time: 0 Render date: 2024-11-22T09:13:49.716Z Has data issue: false hasContentIssue false
  • English
  • Français

The development and evaluation of a multimedia resource for family carers of patients receiving palliative care: A consumer-led project

Published online by Cambridge University Press:  06 February 2014

Kristina Thomas  and
Gaye Moore
Kristina Thomas*
Affiliation:
Centre for Palliative Care, St Vincent's Hospital, Melbourne, and collaborating centre of The University of Melbourne, Melbourne, Victoria, Australia
Gaye Moore
Affiliation:
St Vincent's Hospital, Melbourne, Melbourne, Victoria, Australia
*
Address correspondence and reprint requests to: Kristina Thomas, Centre for Palliative Care, P.O. Box 2900, Fitzroy 3065, Australia. E-mail: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Previous intervention research has shown that group education sessions for carers are effective but not always feasible due to the demands of the caregiving role and the difficulty in getting carers to attend. This project was a consumer-led research initiative to develop and evaluate a multimedia resource (DVD) providing information and support for carers of people receiving palliative care.

Method:

Eight carers were recruited from a community palliative care service to form a steering committee for the project. In collaboration with two researchers, the committee discussed the topics that would be included in the resource, developed an interview guide, participated in the filmed interviews, and developed the evaluation program. The steering committee participated in a focus group as part of the evaluation to elicit their experiences of the project. An evaluation was conducted that included the following: questionnaires for 29 carers and 17 palliative care health professionals; follow-up telephone interviews with carers; a focus group with health professionals; and a focus group with the Carer Steering Committee.

Results:

The carers and health professionals reported that the DVD was informative (93 and 94%, respectively), realistic (96 and 88%), supportive (93 and 88%), and helpful (83 and 100%). All health professionals and carers reported that they would recommend the resource to carers. Carers on the steering committee reported substantial benefits that involved the opportunity to help others and to openly discuss and reflect on their experiences.

Significance of Results:

This is an important resource that can be utilized to support family carers and introduce palliative care. Currently, 1500 copies have been distributed to palliative care services and professionals nationwide and is available online at centreforpallcare.org/index.php/resources/carer_dvd/. Development of this DVD represents a strong collaboration between carers and researchers to produce a resource that is informative, supportive, and meaningful.

Keywords

Family carersCaregiversPalliative careResourceEducation
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 3 , June 2015 , pp. 417 - 423
Copyright
Copyright © Cambridge University Press 2014 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Barg, F., Pasacreta, J., Nuamah, I., et al. (1998). A description of a psychoeducational intervention for family caregivers of cancer patients. Journal of Family Nursing, 44(4), 394–413.Google Scholar
Grunfeld, E., Coyle, D., Whelan, T.J., et al. (2004). Family caregiver burden: Results of a longitudinal study of breast cancer patients and their principal caregivers. Canadian Medical Association Journal, 170(12), 1795–1801.Google Scholar
Harding, R. (2005). Carers: Current research and developments. In Facing death: Loss, change and bereavement in palliative care. Firth, P. et al. (eds.), pp. 150–166. Maidenhead, Berkshire: Open University Press.Google Scholar
Hauser, J.M. & Kramer, B.J. (2004). Family caregivers in palliative care. Clinics in Geriatric Medicine, 4, 671–688.Google Scholar
Hudson, P. & Payne, S. (eds.) (2009). Family carers in palliative care: A guide for health and social care professionals. Oxford: Oxford University Press.Google Scholar
Hudson, P., Quinn, K., Kristjanson, L., et al. (2008). Evaluation of a psycho-educational group program for family caregivers in home-based palliative care. Palliative Medicine, 22, 270–280.Google Scholar
Hudson, P., Thomas, T., Quinn, K., et al. (2009). Teaching family carers about home-based palliative care: Final results from a group education program. Journal of Pain and Symptom Management, 38(2), 299–308.Google Scholar
Hudson, P., Trauer, T., Kelly, B., et al. (2013). Reducing the psychological distress of family caregivers of home-based palliative care patients: Short-term effects from a randomised controlled trial. Psycho-Oncology, 22(9), 1987–1993. Epub ahead of print January 21, 2013.Google Scholar
Kristjanson, L., Hudson, P., & Oldham, L. (2003). Working with families. In Palliative care nursing: A guide to practice, 2nd ed. O'Connor, M. & Aranda, S. (eds.), pp. 271–283. Melbourne: Ausmed Publications.Google Scholar
Palliative Care Australia (PCA) (2005 a). Standards for providing quality palliative care for all Australians, 4th ed. Canberra: PCA.Google Scholar
Palliative Care Australia (PCA) (2005 b). A guide to palliative care service development: A population based approach. ACT: Palliative Care Australia.Google Scholar
Payne, S., Smith, P., & Dean, S. (1999). Identifying the concerns of informal carers in palliative care. Palliative Medicine, 13, 37–44.Google Scholar
Rossi Ferrario, S., Cardillo, V., Vicario, F., et al. (2004). Advanced cancer at home: Caregiving and bereavement. Palliative Medicine, 18(2), 129–136.Google Scholar
Schulz, R., Mendelsohn, A.B., Haley, W.E., et al. (2004). End-of-life care and the effects of bereavement on family caregivers of persons with dementia. The New England Journal of Medicine, 349(20), 1936–1942.Google Scholar
Thomas, C., Morris, S.M., & Harman, J.C. (2002). Companions through cancer: The care given by informal carers in cancer contexts. Social Science & Medicine, 54, 529–544.Google Scholar
World Health Organization (WHO) (2002). National cancer control programmes: policies and managerial guidelines, 2nd ed. Geneva: WHO.Google Scholar