THE EFFECTS OF CARE-GIVING UPON FAMILY MEMBERS OF INDIVIDUALS WHO ARE TREATED IN THE PALLIATIVE CARE UNIT: A PHENOMENOLOGICAL APPROACH

Care giving family members are individuals who are directly involved in the care of a life-threatening patient, often facing a wide range of tasks, such as physical care, providing emotional support, and taking part in the treatment process. This research was carried out to determine effects of care-giving upon family members of individuals who are treated in the palliative care unit. This descriptive phenomenological qualitative study was conducted with a total of 16 family members who had been taking primary care of patients for at least three months and agreed to participate in the study. The data were collected in 35-40 minutes by face-to-face interview with a semi-structured interview form. Colaizzi’s phenomenological data analysis method was used in the evaluation of the data, and 5 themes were determined. Family members participating in the research stated that they experienced physiological problems such as pain, sleep problems and fatigue; psychological problems such as stress and fear; economic problems due to job losses and treatment costs; social problems for reasons such as isolation and problems in family relations such as change in roles and communication disruption. As a result of the research, it was determined that especially all of the family members had psychological and social problems. The problems and needs of family members should be questioned in clinical settings, and they should be directed to support units.

Keywords:

Palliative care, Family member Experience, Phenomenological Approach,

PDF

___

[1] Çolak, D., “Palliative care models around the world”. Turkiye Klinikleri Anesthesiology Reanimation - Special Topics, 10(1), 13-9, 2017.
[2] Sarmento, V.P., Gysels, M., Higginson, I.J., Gomes, B, “Home palliative care works: but how? A meta-ethnography of the experiences of patients and family caregivers”. BMJ Supportive & Palliative Care, 7(4), 390-403, 2017. Doi: 10.1136/bmjspcare-2016-001141.
[3] Goldsmith, J., Ragan, S.L., “Palliative care and the family caregiver: trading mutual pretense (empathy) for a sustained gaze (compassion) ”. Behavioral Sciences, 7(2), 19, 2017. Doi: 10.3390/bs7020019.
[4] Kılıç, S.T., Öz, F., “Problems and quality of life of family members caring cancer patients, and interventions”. Journal of Hacettepe University Faculty of Nursing, 6(3), 197-204, 2019.Doi: 10.31125/hunhemsire.630828.
[5] Naoki, Y., Matsuda, Y., Maeda, I., Kamino, H., Kozaki, Y., Tokoro, A., Maki, N., Takada, M., “Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home”. Palliative & Supportive Care, 16(3), 260-268, 2018. Doi: 10.1017/S1478951517000232.
[6] Veloso, V.I., Tripodoro, V.A., “Caregivers burden in palliative care patients: a problem to tackle”. Current Opinion in Supportive and Palliative Care, 10(4), 330-335, 2016. Doi: 10.1097/SPC.0000000000000239.
[7] Yıldız, E., Dedeli, Ö., Çınar Pakyüz, S., “Evaluation of care burden and quality of life among family caregivers of patients with cancer”. Journal of Education and Research in Nursing, 13(3), 216-225, 2016. Doi: 10.5222/HEAD.2016.216.
[8] Robinson, J., Gott, M., Ingleton, C., “Patient and family experiences of palliative care in hospital: What do we know? An integrative review”. Palliative Medicine, 28(1),18-33, 2014. Doi: 10.1177/0269216313487568.
[9] Ullrich, A., Ascherfeld, L., Marx, G., Bokemeyer, C., Bergelt, C., Oechsle, K., “Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients”. BMC Palliative Care, 16(1), 31, 2017. Doi: 10.1186/s12904-017-0206-z.
[10] Córdova, M.I.P. de., Canales, R., Krederdt, S., Gutiérrez-Gómez, T., Hernandez, R.L., “The relationship of the quality of life and burden of informal caregivers of patients with cancer in Lima, Peru”. Journal of Nursing Education and Practice, 6(8), 36, 2016. Doi: 10.5430/jnep.v6n8p36.
[11] Silva, R.S. da., Trindade, G.S.S., Paixão, G.P. do N., Silva, M.J.P. da., “Family conference in palliative care: concept analysis”. Revista Brasileira de Enfermagem, 71(1), 206-13, 2018. Doi: 10.1590/0034-7167-2016-0055.
[12] Delalibera, M., Barbosa, A., Leal, I., “Circumstances and consequences of care: characterization of the family caregiver in palliative care”. Ciência & Saúde Coletiva, 23(4), 1105-17, 2018. Doi: 10.1590/1413-81232018234.12902016.
[13] Ayabakan-Cot, D., Ates, E., Kurt, B., Nazlican, E., Akbaba, M., “Investigation of depression and quality of life factors in cancer patients’ caregivers”. Journal of the Balkan Union of Oncology, 22(2), 524-9, 2017.
[14] De Korte-Verhoef, M.C., Pasman, H.R.W., Schweitzer, B.P., Francke, A.L., Onwuteaka-Philipsen, B.D., Deliens, L., “Burden for family carers at the end of life; a mixed-method study of the perspectives of family carers and GPs”. BMC Palliative Care, 13(1), 16, 2014. Doi: 10.1186/1472-684X-13-16.
[15] Lee, C-Y., Lee, Y., Wang ,L-J., Chien, C-Y., Fang, F-M., Lin, P-Y., “Depression, anxiety, quality of life, and predictors of depressive disorders in caregivers of patients with head and neck cancer: a six-month follow-up study”. Journal of Psychosomatic Research, 100, 29-34, 2017. Doi: 10.1016/j.jpsychores.2017.07.002.
[16] Tanco, K., Park, J.C., Cerana, A., Sisson, A., Sobti, N., Bruera, E., “A systematic review of instruments assessing dimensions of distress among caregivers of adult and pediatric cancer patients”. Palliative & Supportive Care, 15(1), 110-24, 2017.Doi: 10.1017/S1478951516000079.
[17] Joseph, M.L., “Innovativeness in nursing: A phenomenological and constructivist study” [Doctoral Thesis]. Capella University, United States, 2007.
[18] Seekatz, B., Lukasczik, M., Löhr, M., Ehrmann, K., Schuler, M., Keßler, A.F., …….. van Oorschot, B., “Screening for symptom burden and supportive needs of patients with glioblastoma and brain metastases and their caregivers in relation to their use of specialized palliative care”. Supportive Care in Cancer 25(9), 2761-70, 2017. Doi: 10.1007/s00520-017-3687-7.
[19] Oechsle, K., Ullrich, A., Marx, G., Benze, G., Heine, J., Dickel, L-M., …….. Bergelt, C., “Psychological burden in family caregivers of patients with advanced cancer at initiation of specialist inpatient palliative care”. BMC Palliative Care, 18(1), 102, 2019. Doi: 10.1186/s12904-019-0469-7.
[20] Morrow, R., Rodriguez, A., King, N., “Colaizzi’s descriptive phenomenological method”. The Psychologist, 28(8), 643-644, 2015.
[21] Başkale, H., “Determination of validity, reliability and sample size in qualitative studies”. Dokuz Eylul University E-Journal of Nursing Faculty, 9(1), 23-28, 2016.
[22] Schreiber-Katz, O., Klug, C., Thiele, S., Schorling, E., Zowe, J., Reilich, P., Nagels, K.H., Walter, M.C., “Comparative cost of illness analysis and assessment of health care burden of Duchenne and Becker muscular dystrophies in Germany”. Orphanet Journal of Rare Diseases, 9(1), 210, 2014. Doi: 10.1186/s13023-014-0210-9.
[23] Liu, S., Li, C., Shi, Z., Wang, X., Zhou, Y., Liu, S., Liu, J., Yu, T., Ji, Y., “Caregiver burden and prevalence of depression, anxiety and sleep disturbances in Alzheimer’s disease caregivers in China”. Journal of Clinical Nursing, 26(9–10), 1291–1300, 2017. Doi:10.1111/jocn.13601.
[24] Özdemi̇r, Ü., Taşci, S., Kartin, P., Çürük, G.N.Ç., Nemli̇, A., Karaca, H., “Functional status of chemotherapy receiving individuals and caregiver burden”. Erciyes University Journal of Faculty of Health Sciences, 28;4(1), 49-61, 2017.
[25] Küçükgüçlü, Ö., Şentürk, S.G., Söylemez, B.A., “Experiences in the caregiving process of family caregivers of individuals with alzheimer’s disease”. Dokuz Eylul University E-Journal of Nursing Faculty, 10(2), 2017.
[26] Harding, R., Epiphaniou, E., Hamilton, D., Bridger, S., Robinson, V., George, R., Beynon, T., Higginson, I.J., “What are the perceived needs and challenges of informal caregivers in home cancer palliative care? Qualitative data to construct a feasible psycho-educational intervention”. Supportive Care in Cancer, 20(9), 1975-82, 2012. Doi: 10.1007/s00520-011-1300-z.
[27] Nayak, M.G., George, A., Vidyasagar, M. S., Kamath, A., “Quality of life of family caregivers of patients with advanced cancer”. IOSR Journal of Nursing and Health Science, 3(2), 70-75, 2014.
[28] Soner, S., Aykut, S., “Alzheimer's disease-processed caregiver family members difficulties and social work”. Ahi Evran University Institute of Social Sciences Journal, 3(2), 375-387, 2017.
[29] Kalinkara, V., Kalayci, İ., “Life satisfaction, care burden and burnout of the individuals who have a caregiver service to the elderly at home”. Elderly Issues Research Journal. 9;10(2), 19-39, 2017.
[30] Oğlak, S., “Social care: an ignored dimension of home care”. Turkiye Klinikleri Public Health Nursing - Special Topics, 2(3), 32-7, 2016.