Experiences of People with Advanced Cancer in Home-Based Palliative Care
Keywords:
Advanced cancer, Home-based care, Palliative care, PhenomenologyAbstract
People with advanced cancer who are receiving palliative care at home has increased dramatically in Thailand. The aims of this study were to explore the experiences of people with advanced cancer in home-based palliative care and to study and inform caregiving for them. A qualitative approach was employed using a phenomenological investigation of people with advanced cancer with data gathered from 2011 to 2012. There were seven participants engaged through multiple in-depth interviews. In addition, their family caregivers, and five public health nurses provided perspectives on caregiving through focus group discussions. Three main themes emerged: 1). ‘State of being’, experience facing the end of life. 2). ‘Quality of life’, experience of life satisfaction and satisfaction with care; and 3) ‘Compassionate care in the Buddhist view’, a holistic approach through caregiver assistance, resources and supplies. Palliative care experiences served to enhance the quality of life for people with advanced cancer through a culturally-appropriate, holistic approach of family and nursing care.
This study shows how persons with cancer and their relatives faced end of life crises while fighting to maintain peace and dignity. Sufferers' life experiences and how caregivers helped people with advanced cancer deal with their cancer, suffering, and enabled them to have a better quality of life.
References
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28. World Health Organization, WHO Definition of Palliative Care, WHO, Geneva, Switzerland; 2012.
29. Boston P, Bruce A, Schreiber R. Existential suffering in the palliative care setting: an integrated literature review. J Pain Symptom Manage. 2011; 41: 604–18.
30. Yennurajalingam S, Bruera E. Oxford American Handbook of Hospice and Palliative Medicine. NY: Oxford University Press. 2011.
31. Heidegger, M. Mindfulness (P. Emad& T. Kalary, Trans.). New York, NY: Continuum International. (Original work published in 1997) 2006.
32. Froggatt K, Parker D. Care homes and long-term care for people with dementia. In: Supportive care for the person with dementia. Oxford: Oxford University Press; 2010.
33. Martinez KA, Aslakson RA, Wilson RF, Apostol CC, Fawole OA, Lau BD, et al. A systematic review of health care interventions for pain in patients with advanced cancer. American Journal of Hospice & Palliative Medicine. 2014; 31: 79-86
34. Hardy B., King N., Rodriguez A. The experiences of patients and carers in the daily management of care at the end of life. International Journal of Palliative Nursing 2014, 20, 12.
35. Tornoe K, Danbolt LJ, Kvigne K, Sorlie V. A mobile hospice nurse teaching team’s experience: training care workers in spiritual and existential care for the dying – a qualitative study BMC Palliative Care. 2015; 14:43-51.
36. Lemongkol S. Nurses role in palliative care. In Intarasombat P, Kasamekitwatana S. (editors). Manual Competencies development for nurses in End of Life Care. Nontaburi: Thailand Nursing and Midwifery Council and The Nurses Association of Thailand 2015 [in Thai].
37. Herber OR, Johnston BM. The role of healthcare support workers in providing palliative and end-of-life care in the community: a systematic literature review. Health and Social Care in the Community 2013; 3: 225–235.
38. Beng TS, Guan NC, Seang LK, Pathmawathi S, Ming MF, Jane LE, et al. The experiences of suffering of palliative care patients in Malaysia: A thematic analysis. American Journal of Hospice & Palliative Medicine. 2014; 31: 45-56.
2. Bureau of Medicine Service Department, Bangkok Metropolitan Administration. Patients in Hospitals of Bangkok Metropolis by Diseases: 1994-2014.[cited 2015 May 24]. Available from:http://social.nesdb.go.th/SocialStat/ StatReport_Final.aspx?reportid=226&template[in Thai].
3. Bremner KE, Krahn MD, Warren JL, Hoch JS, Barrett MJ, Liu N, et al. An international comparison of costs of end-of-life care for advanced lung cancer patients using health administrative data. Palliative Medicine 2015, Vol. 29(10) 918 –928=2R1C&yeartype=M&subcatid=17 [in Thai].
4. Bureau of Health Policy and Strategy Office of the Permanent Secretary, MoPH. Number of Deaths and Death Rates per 100,000 Populations by Leading Causes of Death, 2006 – 2012 [cited 2012 May 14]. Available from:http://bps. ops.moph.go.th/Healthinformation/2.3.6_53.pdf
5. Ramsbottom K, Kelley ML. Developing Strategies to Improve Advance Care Planning in Long Term Care Homes: Giving Voice to Residents and Their Family Members. International Journal of Palliative Care. 2014: 1-8
6. Public Health Department, Bangkok Metropolitan. Strategies Plan. Bangkok: n.p. 2014 [in Thai].
7. National Cancer institute, Based Cancer Registry 2014. [cited 2015 November 25]. Available from: http://www. nci.go.th/index1.html [in Thai].
8. Walshe C, Luker KA. District nurses’ role in palliative care provision: a realist review. Int J Nurs Stud. 2010; 47: 1167–1183.
9. Raunkiaer M, Timm H. Interventions concerning competence building in community palliative care services – a literature review. Scand J Caring Sci 2013; 27: 804–819
10. Kelly K, Mutetwa B, Novoson L. Palliative Care in Thailand: Hospice and Home care. A Framework for the Assessment of Costs and Benefits. [cited 2014 May 18]. Available from: https://www.wpi.edu/Pubs/E-project/ Available/E-project-031306-093041/unrestricted/ Deliverable.pdf; p3
11. WisaloP. Life and Death in Cultural Dimension. In Intarasombat P, Kasamekitwatana S. (editors). Manual Competencies development for nurses in End of Life Care. Nontaburi: Thailand Nursing and Midwifery Council and The Nurse’s Association of Thailand 2015 [in Thai].
12. Wyatt GK, Friedman LL. Development and testing of a quality of life model for long-term female cancer survivors. Quality of Life Research, 1996; 5: 387-94.
13. Santina CD, Bernstein RH. “Whole-Patient Assessment, Goal Planning and Infection Points: Their Role in Achieving Quality End-Of-Life Care.” Clinical Geriatric Med, 2004; 20: 595-620.
14. Heidegger M. Being and Time a translation of Sein and Zeit Translated by Joan Stambaugh. NY: State University of New York Press; 1996.
15. Wilson A. Being a practitioner: an application of Heidegger’s phenomenology. Nurse Researcher. 2014; 21: 28-33.
16. World Health Organization, National Guideline on HomeBase Care. [cited 2013 May 10]. Available from:http:// www.doh.gov.za/docs/factsheets/guidelines/homecare/ define.pdf
17. Watts S. User Skills for Qualitative Analysis: Perspective, Interpretation and the Delivery of Impact. Qualitative Research in Psychology, 2014; 11: 1–14.
18 Chesnay MD. Nursing Research Using Phenomenology Qualitative Designs and Methods in Nursing NY: Springer Publishing Company. 2015.
19. World Health Organization, WHO Definition of Palliative Care, WHO, Geneva, Switzerland; 2014.
20. Kvale S. Interviews: An Introduction to Qualitative Research Interviewing. London: Sage Publications; 1996.
21. Guba EG, Lincoln YS. Fourth generation evaluation. California: Sage Publications; 1989.
22. Guba EG, Lincoln YS. Paradigmatic controversies, contradiction, and emerging Confluences in Handbook of Qualitative Research Chapter 8. California: Sage Publications, 2005. 190-214.
23. Speziale HS., & Carpenter DR. Qualitative Research in Nursing: Advancing the Humanistic Imperative. Lippincott Williams & Wilkins, 2011, 134.
24. Emanuel LL, Librach SL. Palliative care core skill and clinical competencies. Philadelphia, PA: Saunders Elsevier. 2011.
25. Institute of Medicine’s committee on the end of life care. Committee on Approaching Death: Addressing Key End of Life Issues. [cited 2015 February 27]. Available from: http://iom.nationalacademies.org/Activities/Aging/ TransformingEndOfLife.aspx
26. Wyatt GK, Friedman LL. Development and testing of a quality of life model for long-term female cancer survivors. Quality of Life Research, 1996; 5: 387-94
27. Wyatt GK, Friedman LL. Long-Term Quality of Life (LTQL).[cited 2013 January 27]. Available from: http:// www.rtog.org/LinkClick.aspx?fileticket=Zhkkcnm N4k4%3D&tabid=118
28. World Health Organization, WHO Definition of Palliative Care, WHO, Geneva, Switzerland; 2012.
29. Boston P, Bruce A, Schreiber R. Existential suffering in the palliative care setting: an integrated literature review. J Pain Symptom Manage. 2011; 41: 604–18.
30. Yennurajalingam S, Bruera E. Oxford American Handbook of Hospice and Palliative Medicine. NY: Oxford University Press. 2011.
31. Heidegger, M. Mindfulness (P. Emad& T. Kalary, Trans.). New York, NY: Continuum International. (Original work published in 1997) 2006.
32. Froggatt K, Parker D. Care homes and long-term care for people with dementia. In: Supportive care for the person with dementia. Oxford: Oxford University Press; 2010.
33. Martinez KA, Aslakson RA, Wilson RF, Apostol CC, Fawole OA, Lau BD, et al. A systematic review of health care interventions for pain in patients with advanced cancer. American Journal of Hospice & Palliative Medicine. 2014; 31: 79-86
34. Hardy B., King N., Rodriguez A. The experiences of patients and carers in the daily management of care at the end of life. International Journal of Palliative Nursing 2014, 20, 12.
35. Tornoe K, Danbolt LJ, Kvigne K, Sorlie V. A mobile hospice nurse teaching team’s experience: training care workers in spiritual and existential care for the dying – a qualitative study BMC Palliative Care. 2015; 14:43-51.
36. Lemongkol S. Nurses role in palliative care. In Intarasombat P, Kasamekitwatana S. (editors). Manual Competencies development for nurses in End of Life Care. Nontaburi: Thailand Nursing and Midwifery Council and The Nurses Association of Thailand 2015 [in Thai].
37. Herber OR, Johnston BM. The role of healthcare support workers in providing palliative and end-of-life care in the community: a systematic literature review. Health and Social Care in the Community 2013; 3: 225–235.
38. Beng TS, Guan NC, Seang LK, Pathmawathi S, Ming MF, Jane LE, et al. The experiences of suffering of palliative care patients in Malaysia: A thematic analysis. American Journal of Hospice & Palliative Medicine. 2014; 31: 45-56.
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Published
2016-07-11
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Tipseankhum N, Tongprateep T, Forrester DA, Silpasuwun P. Experiences of People with Advanced Cancer in Home-Based Palliative Care. PRIJNR [Internet]. 2016 Jul. 11 [cited 2024 Nov. 6];20(3):238-51. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/39347
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