Objective: To explore the perspective of family caregivers of cancer patients undergoing radiotherapy.
Method: The descriptive, qualitative study was conducted at the Indonesia Cancer Foundation, Surabaya, Indonesia, in July and August 2019, and comprised family caregivers of cancer patients undergoing radiotherapy. Data was collected using in-depth semi-structured interviews which were recorded, transcribed and analysed using conventional content analysis.
Results: Of the 26 caregivers aged 24-65 years, 16(62%) were men, 19(73%) were married, and 14(56%) had close relationships with the patients. Among the patients, 4(15.4%) had breast cancer, 2(7.6%) had nasopharyngeal cancer and 20(77%) had cervical cancer. The themes identified were uncertainty, disintegration and burden.
Conclusion: Caregivers of cancer patients tended to have both physical and emotional challenges.
Keywords: Caregivers, Adaptation, Psychological, Neoplasms, Cancer, Radiotherapy. (JPMA 73: S-18 [Suppl. 2]; 2023)
In recent days, the number of family caregivers who deliver care for cancer patients has increased, and so has the severity of the care.1,2 While they care for a patient with cancer, family caregivers may face numerous challenges, such as communication styles, work performances and disruption of their social roles.3 Studies showed that family caregivers need emotional support and other support system from health providers. The support includes appropriate information of caring for cancer patients.4,5 Furthermore, family caregivers experience challenges for uncertainty, anxiety in seeing the worsening of the disease, and even financial and health problems.6 Furthermore, another study has mentioned that family caregivers need to receive intensive counselling due to difficulties that may cause stress, frustration and alteration of health issues.7-10 Proper understanding of family caregivers is important during the caring process of cancer patients in any stage of cancer and specifically during the treatment phase.11,12
Family caregivers could be the main foundation of support for cancer patients. Various issues related to their caregiving experiences, such as financial difficulties, stress, anxiety, depression, and poor health status, have been reported.13,14 This can lead to a decrease in the quality of life (QOL) of family caregivers due to important changes in family and social roles.15,16
The current study was planned to investigate family caregivers’ perspective on caring for cancer patients during radiotherapy.
Subjects and methods
The descriptive, qualitative study was conducted in July and August 2019 at the Indonesia Cancer Foundation, Surabaya, which is the largest cancer home care in Indonesia. After approval from the ethics review committee of the Faculty of Nursing, Universitas Airlangga, the sample was raised using purposive sampling technique and individual were enrolled till data saturation.
Those enrolled were adult family caregivers of either gender providing care to cancer patients undergoing radiotherapy. The subject had a minimum age of 20 years, were never diagnosed with mental issues, and were able to speak the Indonesian language. Informed verbal consent was obtained from all the subjects. Those not meeting the inclusion criteria were excluded.
Data was collected through semi-structured in-depth interviews. Each interview was conducted in a private room within the health facility. All interviews were recorded on a tape recorder. Each interview lasted 30-60 minutes. Written notes were also taken during the interviews.
The recorded interviews were transcribed and reviewed by the principal investigator. Data was analysed using conventional content analysis.
Of the 26 caregivers aged 24-65 years, 16(62%) were men, 19(73%) were married, and 14(56%) had close relationships with the patients. Among the patients, 4(15.4%) had breast cancer, 2(7.6%) had nasopharyngeal cancer and 20(77%) had cervical cancer (Table 1).
The themes identified were uncertainty, disintegration and burden. Caregivers dealt with uncertainty and responsibility. Coping strategy concerning the patient’s side effects during radiotherapy was also a challenge (Table 2).
The caregivers expressed their own cancer-related stressors, as well as the countless changes the families experienced along the journey of the patient being diagnosed with cancer, undergoing treatment and issues related to survival. Similar studies mentioned that the caregivers could have stress coming from emotional disruption of the experiences and other issues.17-18 In the current study, maintaining positive perspective was dependent on the caregivers’ spirituality and community support.
In dealing with complex problems and daily challenges, appropriate interventions for caregivers comprise emotional control, positive support, clarity of information as well as counselling.19,20 In addition, the ability to adapt is a crucial factor in the face of increasing demands that may threaten emotional health.21,22
Interventions should be designed according to the needs and desires of the caregivers to provide meaning and potential benefits in cancer experiences and positive coping attributes, like in terms of spirituality, reviewing the experience, staying focussed on the condition, and remaining a strong person.1-23
The findings of the current study emphasise the importance of the need for understandable and meaningful communication and shared decision-making with healthcare providers who actively involve patients and caregivers. This interaction must be complemented by the help of written information that is understandable to avoid limitations in reading and health literacy.
The current study did not calculate the sample size, which is a limitation. Also, the participants were directly recruited if they met the inclusion criteria due to the limitation of the specific population.
Despite the limitations, however, the current findings indicate the necessity of a comprehensive understanding on the part of professional healthcare providers of the perspective of family caregivers of cancer patients.
The cancer experience often has an impact on the family caregivers. Understanding the perspective of the caregivers is necessary to design appropriate interventions for them.
Acknowledgment: We are grateful to the Faculty of Nursing, Universitas Airlangga, Indonesia.
Conflict of Interest: None.
Source of Funding: None.
1. Johansen S, Cvancarova M, Ruland C. The Effect of Cancer Patients’ and Their Family Caregivers’ Physical and Emotional Symptoms on Caregiver Burden. Cancer Nurs 2018;41:91-9. doi: 10.1097/NCC.0000000000000493.
2. Wulandari SK, Hermayanti Y, Yamin A, Efendi F. Family Process with Breast Cancer Patient in Indonesia. Jurnal Ners 2017;12:180-8.
3. Given BA, Given CW, Sherwood PR. Family and caregiver needs over the course of the cancer trajectory. J Support Oncol 2012;10:57-64. doi: 10.1016/j.suponc.2011.10.003.
4. Given BA, Given CW, Sherwood P. The challenge of quality cancer care for family caregivers. Semin Oncol Nurs 2012;28:205-12. doi: 10.1016/j.soncn.2012.09.002.
5. Bee PE, Barnes P, Luker KA. A systematic review of informal caregivers’ needs in providing home-based end-of-life care to people with cancer. J Clin Nurs 2009;18:1379-93. doi: 10.1111/j.1365-2702.2008.02405.x.
6. Govina O, Vlachou E, Kalemikerakis I, Papageorgiou D, Kavga A, Konstantinidis T. Factors Associated with Anxiety and Depression among Family Caregivers of Patients Undergoing Palliative Radiotherapy. Asia Pac J Oncol Nurs 2019 ;6:283-91. doi: 10.4103/apjon.apjon_74_18.
7. Koenig Kellas J, Castle KM, Johnson AZ, Cohen MZ. Cancer as Communal: Understanding Communication and Relationships from the Perspectives of Survivors, Family Caregivers, and Health Care Providers. Health Commun 2021;36:280-92. doi: 10.1080/10410236.2019.1683952.
8. Muliira JK, Kizza IB, Nakitende G. Roles of Family Caregivers and Perceived Burden When Caring for Hospitalized Adult Cancer Patients: Perspective From a Low-Income Country. Cancer Nurs 2019;42:208-17. doi: 10.1097/NCC.0000000000000591.
9. Govina O, Kotronoulas G, Mystakidou K, Katsaragakis S, Vlachou E, Patiraki E. Effects of patient and personal demographic, clinical and psychosocial characteristics on the burden of family members caring for patients with advanced cancer in Greece. Eur J Oncol Nurs 2015;19:81-8. doi: 10.1016/j.ejon.2014.06.009.
10. Thu H, Sukartini T. The Effectiveness of a Pain Management Program on Intensify of Pain and Quality of Life Among Cancer Patients in Myanmar. Jurnal Ners 2017;12:205-11.
11. Stenberg U, Cvancarova M, Ekstedt M, Olsson M, Ruland C. Family caregivers of cancer patients: perceived burden and symptoms during the early phases of cancer treatment. Soc Work Health Care 2014;53:289-309. doi: 10.1080/00981389.2013.873518.
12. Badr H, Gupta V, Sikora A, Posner M. Psychological distress in patients and caregivers over the course of radiotherapy for head and neck cancer. Oral Oncol 2014;50:1005-11. doi: 10.1016/j.oraloncology.2014.07.003.
13. Wolf BM. Do families cope communally with breast cancer, or is it just talk? Qual Health Res 2015;25:320-35. doi: 10.1177/1049732314549605.
14. Nira AW, Triharini M, Nastiti AA. Factors Associated with The Resilience of Breast Cancer Patients Undergoing Chemotherapy. Pediomaternal Nurs. J 2020;6, 89-99. Doi: 10.20473/pmnj.v6i2.19478
15. Dewi LC, Pratiwi IN, Nimah L, Smith GD. Experiences and coping of cancer patients undergoing radiotherapy: A qualitative study. Enferm. Clin 2021;31:531–4. DOI:10.1016/j.enfcli.2020.10.038.
16. Milbury K, Mallaiah S, Mahajan A, Armstrong T, Weathers SP, Moss KE, et al. Yoga Program for High-Grade Glioma Patients Undergoing Radiotherapy and Their Family Caregivers. Integr Cancer Ther 2018;17:332-6. doi: 10.1177/1534735417689882.
17. Dunn LB, Aouizerat BE, Cooper BA, Dodd M, Lee K, West C, et al. Trajectories of anxiety in oncology patients and family caregivers during and after radiation therapy. Eur J Oncol Nurs 2012;16:1-9. doi: 10.1016/j.ejon.2011.01.003.
18. Nihayati HE, Nurhanifah L, Krisnana I. The Effect of Psychoeducation on Self-Efficacy and Motivation for Taking Treatment in Breast Cancer Patients (Ca Mammae). Jurnal Ners 2021;16:96-100.Doi: 10.20473/jn.v16i1.22560
19. Kang J, Shin DW, Choi JE, Sanjo M, Yoon SJ, Kim HK, et al. Factors associated with positive consequences of serving as a family caregiver for a terminal cancer patient. Psychooncology 2013;22:564-71. doi: 10.1002/pon.3033.
20. Sukartini T, Sari YIP. Women With Breast Cancer Living Witi One, Breast After A Mastectomy. Cent Eur J Nurs Midwifery 2021;12:366- 75. doi: 10.15452/CEJNM 202 I 12.0012.
21. kulsum U, Budiono DI, Kurniawati EM. Women’s Lives After Being Diagnosed With Cervical Cancer. Indonesian Midwifery and Health SciencesJournal 2022;6:181-91. Doi: 10.20473/imhsj.v6i2.2022.181- 191
22. Akmalia G, Riswan M, Andalas M. Depression level and quality of life in ovarian cancer patients in Zainoel Abidin Hospital, Banda Aceh. Majalah Obstetri Ginekologi 2017;25:16–20. Doi: 10.20473/mog.V25I12017.16-20
23. Williams GF, White H, Sen M, Prestwich RJD. Patients’ experience of enteral feeding following (chemo) radiotherapy for head and neck cancer: A qualitative study. Clin Nutr 2019;38:1382-9. doi: 10.1016/j.clnu.2018.06.958