Polish adaptation and validation of a family appraisal of caregiving questionnaire for palliative care (FACQ-PC)
pdf

Keywords

cancer
care assessment
family well-being
informal caregiver
palliative care

How to Cite

Paleczna, M., Rusiecka, D., & Zdończyk, S. (2024). Polish adaptation and validation of a family appraisal of caregiving questionnaire for palliative care (FACQ-PC). Quarterly Journal Fides Et Ratio, 59(3), 188-199. https://doi.org/10.34766/fer.v59i3.1286
Keywords

Abstract

Increasing numbers of people are taking on the role of informal caregivers of oncology patients in the advanced stages of the disease. The outcomes of such a decision are both positive (e.g. strengthening of bonds) and negative (e.g. strain). Their assessment is necessary to customise appropriate interventions for caregivers and is made possible by the FACQ-PC (multi-dimensional Family Appraisal of Caregiving Questionnaire for Palliative Care) – a tool used to assess the functioning of informal caregivers of patients receiving home-based palliative care. The aim of this study was to determine the psychometric properties of the Polish adaptation of the FACQ-PC. The study involved 150 informal caregivers of patients receiving palliative care at home, including 106 women and 44 men aged between 22 and 77 years. Study participants completed the Polish version of the FACQ-PC and a series of questionnaires measuring positive and negative feelings (SUPIN), stress (PSS-10) and satisfaction with family life (SOR- H). The study did not confirm the four-factor structure of the questionnaire; instead, a three-factor structure was found to be more appropriate. The following factors were determined: negative outcomes, positive caregiving appraisals and family well-being. Based on a validation review, the high reliability of the individual scales was established, and internal relevance was confirmed. FACQ-PC-PL was adopted as the abbreviated name of the tool. This tool can be used in scientific research and for initial assessments conducted in a clinical setting.

https://doi.org/10.34766/fer.v59i3.1286
pdf

References

Adejoh, S.O., Boele, F., Akeju, D., Dandadzi, A., Nabirye, E., Namisango, E., Namukwaya, E., Ebenso, B., Nkhoma, K., Allsop, M.J. (2021). The role, impact, and support of informal caregivers in the delivery of palliative care for patients with advanced cancer: A multi-country qualitative study. Palliative Medicine, 35(3), 552-562. https://doi.org/10.1177/0269216320974925

Adelman, R.D., Tmanova, L.L., Delgado, D., Dion, S., Lachs, M.S. (2014). Caregiver burden: a clinical review. Jama, 311(10), 1052-1060. https://doi.org/10.1001/jama.2014.304

Ahmad Zubaidi, Z.S., Ariffin, F., Oun, C.T.C., Katiman, D. (2020). Caregiver burden among informal caregivers in the largest specialized palliative care unit in Malaysia: a cross sectional study. BMC Palliative Care, 19(1), 1-15. https://doi.org/10.1186/s12904-020-00691-1

Blom, C., Reis, A., Lencastre, L. (2023). Caregiver Quality of Life: Satisfaction and Burnout. International Journal of Environmental Research and Public Health, 20(16), 6577. https://doi.org/10.3390/ijerph20166577

Bosma, H., Apland, L., Kazanjian, A. (2010). Cultural conceptualizations of hospice palliative care: more similarities than differences. Palliative Medicine, 24(5), 510-522. https://doi.org/10.1177/0269216309351380

Brazil, K., Bainbridge, D., Rodriguez, C. (2010). The stress process in palliative cancer care: a qualitative study on informal caregiving and its implication for the delivery of care. American Journal of Hospice and Palliative Medicine, 27(2), 111-116. https://doi.org/10.1177/1049909109350176

Brzozowski, P. (2010). Skala uczuć pozytywnych i negatywnych SUPIN. Polska adaptacja skali PANAS Davida Watsona i Lee Anny Clark. Pracownia Testów Psychologicznych Polskiego Towarzystwa Psychologicznego.

Choi, S., Seo. J. (2019). Analysis of caregiver burden in palliative care: an integrated review. Nursing Forum, 54(2). 280-290. https://doi.org/10.1111/nuf.12328

Cohen, S., Kamarck, T., Mermelstein, R. (1983). A global measure of perceived stress. Journal of Health and Social Behavior, 385-396.

Cooper, B., Kinsella, G.J., Picton, C. (2006). Development and initial validation of a family appraisal of caregiving questionnaire for palliative care. Psycho-Oncology: Journal of the Psychological, Social and Behavioral Dimensions of Cancer, 15(7), 613-622. https://doi.org/10.1002/pon.1001

Dahlberg, L., Demack, S., Bambra, C. (2007). Age and gender of informal carers: a population-based study in the UK. Health & Social Care in the Community, 15(5), 439-445. https://doi.org/10.1111/j.1365-2524.2007.00702.x

del-Pino-Casado, R., Priego-Cubero, E., López-Martínez, C., Orgeta, V. (2021). Subjective caregiver burden and anxiety in informal caregivers: A systematic review and meta-analysis. PloS One, 16(3), e0247143. https://doi.org/10.1371/journal.pone.0247143

Del Río Lozano, M., García-Calvente, M.D. M., Calle-Romero, J., Machón-Sobrado, M., Larrañaga-Padilla, I. (2017). Health-related quality of life in Spanish informal caregivers: gender differences and support received. Quality of Life Research, 26, 3227-3238. https://doi.org/10.1007/s11136-017-1678-2

Duimering, A., Turner, J., Chu, K., Huang, F., Severin, D., Ghosh, S., Yee, D., Wiebe, E., Usmani, N., Gabos, Z., Patel, S., Danielson, B., Amanie, J., Fairchild, A. (2020). Informal caregiver quality of life in a palliative oncology population. Supportive Care in Cancer, 28, 1695-1702. https://doi.org/10.1007/s00520-019-04970-3

Friedrichsdorf, S.J., Postier, A., Dreyfus, J., Osenga, K., Sencer, S., Wolfe, J. (2015). Improved quality of life at end of life related to home-based palliative care in children with cancer. Journal of Palliative Medicine, 18(2), 143-150. https://doi.org/10.1089/jpm.2014.0285

Gawlik, M., Kurpas, D. (2015). Ocena jakości życia opiekunów domowych pacjentów z chorobą nowotworową z wykorzystaniem kwestionariusza Caregiver Quality of Life – Cancer. Palliative Medicine/Medycyna Paliatywna, 7(1), 67-77.

Gérain, P., Zech, E. (2019). Informal caregiver burnout? Development of a theoretical framework to understand the impact of caregiving. Frontiers in Psychology, 10, 466359. https://doi.org/10.3389/fpsyg.2019.01748

Given, B.A., Given, C.W., Sherwood, P. (2012). Caregiver burden. (In:) A. Naeim, D.B. Reuben, P.A. Ganz (eds.), Management of cancer in the older patient, 241– 248. Elsevier.

Haan, M.M., Olthuis, G., van Gurp, J.L. (2021). Feeling called to care: a qualitative interview study on normativity in family caregivers’ experiences in Dutch home settings in a palliative care context. BMC Palliative Care, 20, 1-15. https://doi.org/10.1186/s12904-021-00868-2

Hampton, M.M., Newcomb, P. (2018). Self-efficacy and stress among informal caregivers of individuals at end of life. Journal of Hospice & Palliative Nursing, 20(5), 471-477. https://doi.org/10.1097/NJH.0000000000000464

Harding, R., Epiphaniou, E., Hamilton, D., Bridger, S., Robinson, V., George, R., Beynon, T., Higginson, I.J. (2012). 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, 1975-1982. https://doi.org/10.1007/s00520-011-1300-z

Harding, R., Gao, W., Jackson, D., Pearson, C., Murray, J., Higginson, I.J. (2015). Comparative analysis of informal caregiver burden in advanced cancer, dementia, and acquired brain injury. Journal of Pain and Symptom Management, 50(4), 445- 452. https://doi.org/10.1016/j.jpainsymman.2015.04.005

Johansen, S., Cvancarova, M., Ruland, C. (2018). The effect of cancer patients’ and their family caregivers’ physical and emotional symptoms on caregiver burden. Cancer Nursing, 41(2), 91-99. https://doi.org/10.1097/NCC.0000000000000493

Juczyński, Z., Ogińska-Bulik, N. (2009). Narzędzia pomiaru stresu i radzenia sobie ze stresem (Methods to measure stress and coping). Pracownia Testów Psychologicznych.

Kinsella, G., Cooper, B., Picton, C., Murtagh, D. (2000). Factors influencing outcomes for family caregivers of persons receiving palliative care: Toward an integrated model. Journal of Palliative Care, 16(3), 46-54. https://doi.org/10.1177/082585970001600308

Lazarus, R., Folkman, S. (1984). Stress, Appraisal, and Coping. New York.

Li, Q., Loke, A.Y. (2013). The positive aspects of caregiving for cancer patients: a critical review of the literature and directions for future research. Psycho-Oncology, 22(11), 2399-2407.

Li, Q.P., Mak, Y.W., Loke, A.Y. (2013). Spouses’ experience of caregiving for cancer patients: literature review. International Nursing Review, 60(2), 178-187.

Liddell, B.J., Williams, E.N. (2019). Cultural differences in interpersonal emotion regulation. Frontiers in Psychology, 10, 999. https://doi.org/10.3389/fpsyg.2019.00999

Margasiński, A. (2013). Skale Oceny Rodziny. Polska adaptacja FACES IV – Flexibility and Cohesion Evaluation Scales Davida H. Olsona. Podręcznik. Pracownia Testów Psychologicznych Polskiego Towarzystwa Psychologicznego.

Masternak, K., Bartoszek, A., Niedorys, B., Kardas, G. (2020). Uwarunkowania jakości życia nieformalnych opiekunów chorych leczonych paliatywnie. Palliative Medicine/Medycyna Paliatywna, 12(3). https://doi.org/10.5114/pm.2020.99119

Matsumoto, D., Yoo, S.H., Nakagawa, S. (2008). Culture, emotion regulation, and adjustment. Journal of Personality and Social Psychology, 94(6), 925-937. https://doi.org/10.1037/0022-3514.94.6.925

Molassiotis, A., Wang, M. (2022). Understanding and supporting informal cancer caregivers. Current Treatment Options in Oncology, 23(4), 494-513. https://doi.org/10.1007/s11864-022-00955-3

Ochoa, C.Y., Lunsford, N.B., Smith, J.L. (2020). Impact of informal cancer caregiving across the cancer experience: A systematic literature review of quality of life. Palliative & Supportive Care, 18(2), 220-240. https://doi.org/10.1017/S1478951519000622

Olson, D. (2011). FACES IV and the Circumplex Model: Validation study. Journal of Marital and Family Therapy, 37(1), 64–80. https://doi.org/10.1111/j.1752-0606.2009.00175.x

Proot, I.M., Abu-Saad, H.H., Crebolder, H.F., Goldsteen, M., Luker, K.A., Widdershoven, G.A. (2003). Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity. Scandinavian Journal of Caring Sciences, 17(2), 113-121. https://doi.org/10.1046/j.1471-6712.2003.00220.x

Salifu, Y., Almack, K., Caswell, G. (2021). ‘My wife is my doctor at home’: A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting. Palliative Medicine, 35(1), 97-108. https://doi.org/10.1177/0269216320951107

Thana, K., Lehto, R., Sikorskii, A., Wyatt, G. (2021). Informal caregiver burden for solid tumour cancer patients: a review and future directions. Psychology & Health, 36(12), 1514-1535. https://doi.org/0.1080/08870446.2020.1867136

Veloso, V.I., Tripodoro, V.A. (2016). Caregivers burden in palliative care patients: a problem to tackle. Current Opinion in Supportive and Palliative Care, 10(4), 330-335. https://doi.org/10.1097/SPC.0000000000000239

Watson, D., Clark, L., Tellegen, A. (1988). Development and validation of brief measures of positive and negative affect: The PANAS scale. Journal of Personality and Social Psychology, 54, 1063- 1070. https://doi.org/10.1037/0022-3514.54.6.1063

Downloads

Download data is not yet available.