The Dignity of Middle Adult Palliative Patients at Home in Bantul

Bertha Tesma Wulandari; Arianti Arianti

doi:10.3889/oamjms.2021.5751

Authors

Bertha Tesma Wulandari School of Nursing, Universitas Muhammadiyah Yogyakarta, Bantul, Indonesia
Arianti Arianti School of Nursing, Universitas Muhammadiyah Yogyakarta, Bantul, Indonesia

DOI:

https://doi.org/10.3889/oamjms.2021.5751

Keywords:

Dignity, Middle adult, Palliative care at home, Palliative patient care

Abstract

BACKGROUND: The condition of middle adult patients with palliative disease is prone to experiencing physical weakness and psychological suffering, disrupting dignity. As a caregiver at home, the family plays an essential role in providing support to maintain patient dignity.

AIM: This study aims to determine the image of the dignity of the middle adult patient with palliative care needs by family at home.

METHODS: This research is a qualitative study with a phenomenological approach. Participants were seven people with the purposive sampling method. Data collection methods were conducted using in-depth interviews and semi-structured observation. Research instruments included interview guidelines, field notes, and an observation form. Data validity used reference material, rich and thick description, and peer debriefing. Data analysis included data collection, data reduction, data presentation, and conclusion.

RESULTS: The results showed that the dignity of patients was considered by six themes; self-esteem went up and down, the meaning of illness and death, family response to the patient, sources of decision-making, an image of the quality of life, and future wishes.

CONCLUSION: This study had six themes depicting the dignity of patients that consisted of subthemes. The themes included self-esteem went up and down, the meaning of illness and death, family response to the patient, sources of decision-making, an image of the quality of life, and future wishes.

Downloads

Download data is not yet available.

Metrics

Metrics Loading ...

Plum Analytics Artifact Widget Block

References

World Health Organization. Planning and Implementing Palliative Care Services: A Guide for Programme Managers. Geneva: World Health Organization; 2016. http://www.who.int/ncds/management/palliativecare/palliative_care_services/en. [Last accessed on 2021 May 15].

World Health Organization. Palliative Care. Geneva: World Health Organization; 2016. http://www.who.int/mediacentre/factsheets/fs402/en. [Last accessed on 2021 May 15].

World Health Organization. Integrating Palliative Care and Symptom Relief into Primary Health Care: WHO Guide for Planners, Implementers and Managers. Geneva: World Health Organization; 2018.

Matzo M, Sherman DW. Palliative Care Nursing: Quality Care to the End of Life. New York, USA: Springer Publishing Company; 2019. DOI: https://doi.org/10.1891/9780826127198

Amin L. Medecins Sans Frontieres (MSF). Palliative Care: Our Mission is Also to Alleviate Suffering; 2018. Available from: https://www.msf.org/palliative-care-our-mission-also-alleviate-suffering. [Last accessed on 2019 May 18].

Hasanah NN, Arianti A. Martabat pasien paliatif di rumah sakit PKU muhammadiyah gamping. J Health Stud 2018;3:66-78. https://doi.org/10.31101/jhes.605 DOI: https://doi.org/10.31101/jhes.605

Rodriguez-Prat A, Monforte-Royo C, Porta-Sales J, Escribano X, Balaguer A. Patient perspectives of dignity, autonomy, and control at the end of life: Systematic review and meta-ethnography. PLoS One. 2016;11(3):1-18. DOI: https://doi.org/10.1371/journal.pone.0151435

Yogyakarta Government Health Office. Profil Kesehatan Tahun 2019 Kota Yogyakarta; 2019. Available from: http://www.profil_dinkes_2019_data_2018.pdf. [Last accessed on 2021 May 15].

Sugiyono. Metodologi Penelitian Kuantitatif, Kualitatif, dan R and D. Bandung: Alfabeta; 2015.

Sugiyono. Metodologi Penelitian Kuantitatif, Kualitatif, dan R and D. Bandung: Alfabeta; 2016.

Afiyanti Y, Rachmawati NI. Metodologi Penelitian Kualitatif Dalam Riset Keperawatan. Jakarta: Rajawali Pers; 2014.

Donato SC, Matuoka JY, Yamashita CC, de Salvetti M. Effects of dignity therapy on terminally ill patients: A systematic review. Rev Esc Enferm USP. 2016;50(6):1014-24. https://doi.org/10.1590/s0080-623420160000700019 PMid:28198968 DOI: https://doi.org/10.1590/s0080-623420160000700019

Klinken MV, Graaf ED, Bressers R, Koorn R, van der Baan F, Teunissen S. What do future hospice patients expect of hospice care: Expectations of patient in the palliative phase who might be in need hospice care in the future: A qualitative exploration. Am J Hosp Palliat Med. 2020;37(6):439-47. https://doi.org/10.1177/1049909119893358 PMid:31818118 DOI: https://doi.org/10.1177/1049909119893358

Busija L, Tan J, Sanders K. Associations between illness duration and health-related quality of life in specified mental and physical chronic health conditions: Results from a population-based survey. Qual Life Res. 2017;26(10):2671-81. https://doi.org/10.1007/s11136-017-1592-7 PMid:28500571 DOI: https://doi.org/10.1007/s11136-017-1592-7

Li Q, Xu Y, Zhou H, Loke AY. Factors influencing the health-related quality of life of Chinese advanced cancer patients and their spousal caregivers: A cross-sectional study. BMC Palliat Care. 2016;15:72. https://doi.org/10.1186/s12904-016-0142-3 PMid:27484209 DOI: https://doi.org/10.1186/s12904-016-0142-3

Tavares ML, Pimenta AM, García-Vivar C, Beinner MA, Montenegro LC. Relationship between level of care dependency and quality of life of family caregivers of care-dependent patients. J Family Nurs. 2019;26(1):65-76. https://doi.org/10.1177/1074840719885220 DOI: https://doi.org/10.1177/1074840719885220

Canadian Mental Health Association. The Relationship between Mental Health, Mental Illnes, and Chronic Physical Conditions. https://doi.org/10.5040/9781492595724.ch-001 DOI: https://doi.org/10.5040/9781492595724.ch-001

Mental Health Foundation. Long-term Physical Conditions and Mental Health; 2020. https://doi.org/10.5040/9781492595724.ch-008 DOI: https://doi.org/10.5040/9781492595724.ch-008

Hulbert-Williams NJ, Storey L, Wilson KG. Psychological interventions for patients with cancer: Psychological flexibility and the potential utility of acceptance and commitment therapy. Eur J Cancer Care. 2015;24(1):15-27. https://doi.org/10.1111/ecc.12223 PMid:25100576 DOI: https://doi.org/10.1111/ecc.12223

Kyota A, Kanda K. How to come to terms with facing death: A qualitative study examining the experiences of patients with terminal Cancer. BMC Palliat Care. 2019;18:33. https://doi.org/10.1186/s12904-019-0417-6 PMid:30947725 DOI: https://doi.org/10.1186/s12904-019-0417-6

Rosland AM. Sharing the Care: The Role of Family in Chronic Illness. California: California Healthcare Foundation; 2009.

Hsu C, Gray MF, Murray L, Abraham M, Nickel W, Sweeney JM, et al. Actions and process that patients, family members, and physicians associate with patient and family-centered care. BMC Family Pract. 2019;20(35):1-11. https://doi.org/10.1186/s12875-019-0918-7 PMid:30803446 DOI: https://doi.org/10.1186/s12875-019-0918-7

Sedig L. What’s the role of autonomy in patient and family centered care when patients and family members don’t agree: Ethics case. Am Med Assoc J Ethics. 2016;18(1):12-7. https://doi.org/10.1001/journalofethics.2017.18.1.ecas2-1601 PMid:26854631 DOI: https://doi.org/10.1001/journalofethics.2017.18.1.ecas2-1601

Bakan AB, Ozdemir S. Effect of knowing the diagnosis or not on cancer’s hopelessness levels. Int J Caring Sci 2017;10:1319-28.

Yadav BS, Jhamb S. Case report: Hope in palliative care: Cultural implications. J Palliat Care. 2015;31(3):189-92. https://doi.org/10.1177/082585971503100309 PMid:26514025 DOI: https://doi.org/10.1177/082585971503100309