Introduction:

Caring for gastrointestinal cancer patients can be demanding and to some, caregivers, burdensome; resulting in them having low quality of life (QOL) and thus they may become the next potential patients. Hence, true heartfelt experiences need to be captured to highlight issues and preventive measures that are not voiced out as most often caregiving is done in silence and out of responsibility. Therefore, this study aimed to explore on the caregivers’ insights on how caregiving experience has resulted in their low QOL.

Methods:

Seven family caregivers were purposively selected from two oncology centres in the Klang Valley, Malaysia for this qualitative case study. The selection was based on the low scores obtained from Malay Caregiver Quality of Life Cancer (MCQOL) questionnaire during an initial cross-sectional study. Following that, in-depth interviews were performed on those selected caregivers. Interview data were triangulated with the questionnaire and observations for validity. Member and expert checking were conducted to ensure credibility and trustworthiness. A thematic content analysis was later performed.

Results:

Thematic analysis revealed four distinct contributors to the caregivers’ QOL; namely, patients’ financial and stress management; impact towards physical, psychological, social (including relationship) wellbeing, communication; and support from families, organisation and community.

Conclusion:

The qualitative study discovered evidence for collaborative support needed to ensure better QOL for the caregivers. Malaysian Journal of Medicine and Health Sciences (2023) 19(1):140-148. doi:10.47836/mjmhs19.1.20

1. Abdullah, N. N., Idris, I., Shamsuddin, K., & Nik Abdullah, N. (2020). Health-related quality of life in Malaysian gastrointestinal cancer patients and their family caregivers—A comparison study. Supportive Care in Cancer, 28(4), 1891–1899. https://doi.org/10.1007/s00520-019-05007-5
2. Abdullah, N. N., Idris, I. B., Shamsuddin, K., & Abdullah, N. (2019). Health-related quality of life (HRQOL) of gastrointestinal cancer caregivers: The impact of caregiving. Asian Pacific Journal of Cancer Prevention, 20(4), 1191–1197. https://doi.org/10.31557/APJCP.2019.20.4.1191
3. Alzahrani, A. S., Alqahtani, A., Alhazmi, M., Gaafar, R., Bajabir, D., Alharbi, I. M., ... & Al-Ahwal, M. S. (2018). Attitudes of cancer patients and their families toward disclosure of cancer diagnosis in Saudi Arabia: A Middle Eastern population example. Patient Preference and Adherence, 12, 1659–1664. https://doi.org/10.2147/PPA.S176651
4. Ashing-Giwa, K. T. (2000). Quality of life and psychosocial outcomes in long-term survivors of breast cancer. Journal of Psychosocial Oncology, 17(3-4), 47–62. https://doi.org/10.1300/J077v17n03_03
5. Che Bakar, O., Yusoff, E. H., & Anisah Omar, A. (2008). Psychiatric morbidity and quality of life among family caregivers of hospice patients with cancer: A home based community preliminary study. ASEAN Journal of Psychiatry, 9(2), 78–84. https://myjurnal.mohe.gov.my/filebank/published_article/15386/AJP_2008_Osman.pdf
6. Creswell, J. W., & Miller, D. L. (2000). Determining validity in qualitative inquiry. Theory Into Practice, 39(3), 124–131. https://doi.org/10.1207/s15430421tip3903_2
7. Creswell, J. W., & Plano Clark, V. L. (2011). Choosing a mixed methods design. SAGE Publications.
8. Ekholm, K., Grönberg, C., Börjeson, S., & Berterö, C. (2013). The next of kin experiences of symptoms and distress among patients with colorectal cancer: Diagnosis and treatment affecting the life situation. European Journal of Oncology Nursing, 17(2), 125–130. https://doi.org/10.1016/j.ejon.2012.05.003
9. Fitch, M., & Longo, C. J. (2018). Exploring the impact of out-of-pocket costs on the quality of life of Canadian cancer patients. Journal of Psychosocial Oncology, 36(6), 1–15. https://doi.org/10.1080/07347332.2018.1486937
10. Fujinami, R., Otis-Green, S., Klein, L., Sidhu, R., & Ferrell, B. (2012). Quality of life of family caregivers: Challenges faced in care of the lung cancer patient. Clinical Journal of Oncology Nursing, 16(6), E210–E220. https://doi.org/10.1188/CJON.E210-E220
11. Given, B. A., Given, C. W., & Kozachik, S. (2001). Family support in advanced cancer. CA: A Cancer Journal for Clinicians, 51(4), 213–231. https://doi.org/10.3322/canjclin.51.4.213
12. Glajchen, M. (2012). Physical well-being of oncology caregivers: An important quality-of-life domain. Seminars in Oncology Nursing, 28(4), 226–235. https://doi.org/10.1016/j.soncn.2012.09.005
13. Haynes-Maslow, L., Allicock, M., & Johnson, L. S. (2016). Cancer support needs for African American breast cancer survivors and caregivers. Journal of Cancer Education, 31(1), 166–171. https://doi.org/10.1007/s13187-015-0832-1
14. Ji, J., Zöller, B., Sundquist, K., & Sundquist, J. (2012). Increased risks of coronary heart disease and stroke among spousal caregivers of cancer patients. Circulation, 125(14), 1742–1747. https://doi.org/10.1161/CIRCULATIONAHA.111.057018
15. Juarez, G., Branin, J. J., & Rosales, M. (2015). Perceptions of QOL among caregivers of Mexican ancestry of adults with advanced cancer. Quality of Life Research, 24(7), 1729–1740. https://doi.org/10.1007/s11136-014-0911-5
16. Kaur, R. (2015). Cultural beliefs, cancer and stigma: Experiences of patients from Punjab (India). Studies on Ethno-Medicine, 9(2), 247–254. https://doi.org/10.1080/09735070.2015.11905442
17. Kent, E. E., Rowland, J. H., Northouse, L., Litzelman, K., Chou, W. S., Shelburne, N., ... & Gallicchio, L. (2016). Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving. Cancer, 122(13), 1987–1995. https://doi.org/10.1002/cncr.29939
18. Kristanti, M. S., Effendy, C., Utarini, A., Vernooij-Dassen, M., & Engels, Y. (2019). The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach. Palliative Medicine, 33(6), 676–684. https://doi.org/10.1177/0269216319833260
19. Lai, D. W. L. (2010). Filial piety, caregiving appraisal, and caregiving burden. Research on Aging, 32(2), 200–223. https://doi.org/10.1177/0164027509351475
20. Leonidou, C., & Giannousi, Z. (2018). Experiences of caregivers of patients with metastatic cancer: What can we learn from them to better support them? European Journal of Oncology Nursing, 32, 25–32. https://doi.org/10.1016/j.ejon.2017.11.002
21. Lim, H. A., Tan, J. Y. S., Chua, J., Yoong, R. K. L., Lim, S. E., Kua, E. H., ... & Mahendran, R. (2016). Quality of life of family caregivers of cancer patients in Singapore and globally. Singapore Medical Journal, 57(8), 1–13. https://doi.org/10.11622/smedj.2016083
22. Lua, P. L., Norhayati, M., & Ahmad Kashfi, A. R. (2013). HRQoL profile and psychometric properties assessment of caregiver quality of life instrument among HIV/AIDS family caregivers in Terengganu. Malaysian Journal of Psychiatry, 22(1), 1–4. http://mjpsychiatry.org/index.php/mjp/article/view/231/173
23. Mancini, J., Baumstarck-Barrau, K., Simeoni, M. C., ... & Auquier, P. (2011). Quality of life in a heterogeneous sample of caregivers of cancer patients: An in-depth interview study. European Journal of Cancer Care, 20(4), 483–492. https://doi.org/10.1111/j.1365-2354.2010.01227.x
24. MyHealth, Ministry of Health. (2019). Surrender or redha: Mental health for prime years. Ministry of Health Malaysia. http://www.myhealth.gov.my/en/surrender-or-redha/
25. Ng, H. Y., Griva, K., Lim, H. A., Tan, J. Y., & Mahendran, R. (2016). The burden of filial piety: A qualitative study on caregiving motivations amongst family caregivers of patients with cancer in Singapore. Psychology & Health, 31(11), 1293–1310. https://doi.org/10.1080/08870446.2016.1204450
26. Omiya, T., Kutsumi, M., & Fukui, S. (2021). Work, leisure time activities, and mental health among family caregivers of the elder people in Japan. Healthcare, 9(2), Article 129. https://doi.org/10.3390/healthcare9020129
27. Padmaja, G., Vanlalhruaii, C., Rana, S., Tiamongla, & Kopparty, S. (2016). Quality of life of patients with cancer: A determinant of the quality of life of their family caregivers. Journal of Cancer Education, 31(4), 1–7. https://doi.org/10.1007/s13187-016-1000-y
28. Richards, L., & Morse, J. M. (2002). Read me first for a user's guide to qualitative methods. SAGE Publications.
29. Röhrl, K., Guren, M. G., Astrup, G. L., Småstuen, M. C., & Rustøen, T. (2020). High symptom burden is associated with impaired quality of life in colorectal cancer patients during chemotherapy: A prospective longitudinal study. European Journal of Oncology Nursing, 44, Article 101679. https://doi.org/10.1016/j.ejon.2019.101679
30. Salonen, P., Rantanen, A., Kellokumpu-Lehtinen, P. L., Huhtala, H., & Kaunonen, M. (2014). The quality of life and social support in significant others of patients with breast cancer—A longitudinal study. European Journal of Cancer Care, 23(2), 274–283. https://doi.org/10.1111/ecc.12153
31. Shaw, J., Harrison, J., Young, J., Butow, P., Sandroussi, C., Martin, D., ... & TARGIT-A Trial Investigators. (2013). Coping with newly diagnosed upper gastrointestinal cancer: A longitudinal qualitative study of family caregivers’ role perception and supportive care needs. Supportive Care in Cancer, 21(3), 749–756. https://doi.org/10.1007/s00520-012-1575-8
32. Son, K. Y., Lee, C. H., Park, S. M., Lee, C. H., Oh, S. I., Oh, B., ... & Kim, Y. J. (2012). The factors associated with the quality of life of the spouse caregivers of patients with cancer: A cross-sectional study. Journal of Palliative Medicine, 15(2), 216–224. https://doi.org/10.1089/jpm.2011.0305
33. Van Roij, J., Brom, L., Youssef-El Soud, M., van de Poll-Franse, L., & Raijmakers, N. J. (2019). Social consequences of advanced cancer in patients and their informal caregivers: A qualitative study. Supportive Care in Cancer, 27(4), 1187–1195. https://doi.org/10.1007/s00520-018-4437-1
34. Vanlalhruaii, C., Padmaja, G., & Kopparty, S. (2018). Quality of life of elderly cancer patients as predictor of their caregivers’ quality of life. Indian Journal of Gerontology, 32(3), 273–281. http://www.gerontologyindia.com/pdf/vol-32-3.pdf#page=47
35. Washington, K. T., Oliver, D. P., Benson, J. J., Rolbiecki, A. J., Jorgensen, L. A., Cruz-Oliver, D. M., ... & Demiris, G. (2019). Factors influencing engagement in an online support group for family caregivers of individuals with advanced cancer. Journal of Psychosocial Oncology, 37(6), 1–16. https://doi.org/10.1080/07347332.2019.1624674
36. WHOQOL Group. (1995). The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science & Medicine, 41(10), 1403–1409. https://doi.org/10.1016/0277-9536(95)00112-K
37. WHOQOL Group. (1998). The World Health Organization Quality of Life Assessment (WHOQOL): Development and psychometric properties. Social Science & Medicine, 46(12), 1569–1585. https://doi.org/10.1016/s0277-9536(98)00009-4
38. Wittenberg, E., Kerr, A. M., & Goldsmith, J. (2021). Exploring family caregiver communication difficulties and caregiver quality of life and anxiety. American Journal of Hospice and Palliative Medicine, 38(2), 147–153. https://doi.org/10.1177/1049909120935371