IPA Conference Milan 2024 / Poster/ Understanding lived experiences of cancer patients’ informal caregivers: an interpretative phenomenological analysis

poster design by teknike_

Introduction

The current study aimed to explore informal caregivers’ experiences while providing care to their terminally ill parents with cancer. Informal caregiving (IC) is the unpaid and often non-professional assistance and support provided by family members or friends to individuals dealing with chronic illnesses, disabilities, or other conditions (Roth et al., 2015; Smith & Kuretich, 2023). Greece has the highest percentage of individuals providing informal care among all European countries (Eurofound, 2017) regularly, with 34% of the population involved. This figure is twice the European average of 17%, highlighting the considerable importance of informal caregiving in Greece. Most of those informal caregivers are women at a stunning 63.5%, typically family members, outnumbering men in this role. Female informal caregivers of cancer patients often face distress, sadness, loss of interest in activities, sleep disturbances, and relationship difficulties (Kirk et al., 2022). Caregiving can also lead to anxiety, depression, social isolation, financial strain, and unmet social needs (for a review see Theißen et al., 2024; Chong, et al., 2023) Caregivers may feel misled or abandoned due to inadequate information from clinicians and experience intense uncertainty and anticipatory grief (Rodenbach, et al., 2019). These findings highlight the need for a thorough understanding of the emotional experiences of caregivers of parents with advanced cancer. 

The study is guided by the following research questions: How participants make sense of informal caregiving? What is the emotional impact this experience had on their lives? 

Methods Design: 

Semi-structured, one-to-one interviews were conducted to collect the data, and Interpretative Phenomenological Analysis (Smith et al., 2021) was used for analysis. Participants: Three Greek women aged 33 to 52 (27 to 51 when they acted as ICs) from relatively different socioeconomic backgrounds. They all hold higher education degrees and reside in Athens, Greece. They shared the experience of acting as primary caregivers to their parents dying from cancer. The caregiving period extended to roughly one year. 

Results 

The caregivers' narrative in the following theme is focusing on the experience of loneliness. Firstly, they discuss feeling lonely in relation to psychologists and relatives, from whom they would expect a more supportive and compassionate stance. Secondly, their narratives focus on the meaning they attribute to caregiving as a moral and emotional experience. 

Feeling of loneliness 

Loneliness is a distressing emotional state resulting from a perceived gap between desired and actual social connections. It is characterized by feelings of isolation and emptiness, even in the presence of others (Gray et al., 2019) and the feeling that someone is disconnected and unsupported (Perlman et al., 1981; Vasileiou, 2017), not just physically alone. In the following subtheme, participants refer to the isolation they experienced from health professionals and relatives. 

As Anna faced the lack of palliative care services, she felt helpless and unsupported, and stressed the importance of having a healthcare provider at home, next to the patient to surround the disease more fully:

 

“People who don't need therapy but need care at the end of their lives [...] that's a huge void [...]. I mean, even if there wasn't any facility, if there was just someone who knew how to take care of them and be there [...]”. 

 

The sense of loneliness and helplessness is illustrated in Nora’s account as she explained that “[T]here was no psychologist to support the patients, and even more so to support the caregivers [...] we were completely alone over there, I felt a huge loneliness.” 

Similarly, Jane felt angry as her siblings and partner did not support both her and the patient emotionally. 

 “With my siblings, I had enormous anger [...]instead of having all his children around him and standing up for him in difficult times [...]. 

 

She also felt disappointed as her partner's support was short-lived, leaving her feeling helpless during a challenging time. My partner [...]. I can't say he didn't support me at all, he just lost it at some point towards the end [...]. He was thinking more about himself instead of thinking about me [...]. He couldn't support me.” 

Loneliness and meaning 

Despite feeling dissatisfied or even bitter about the isolation they experience from their social environment, the participants emphasized the significance of the concept of care as part of their value system and expressed a deep emotional connection and affection for their parents. 

 Prioritizing the care of her father over her family and work, led Nora to total isolation. As she explained “I had no life [...]. I was with my father 24/7 [...] completely alone”. What helped Nora continue caring for her father, was the moral commitment she felt, as no one else could take this role. As she described, “I had pushed myself so much to stand on my own feet because if I didn't exist, there was no one”. Further, Jane seems compassionate for her father when asking herself: “I was thinking, if it were you Jane, and you had to face death, would you want everyone to leave?" echoing Applebaum et al.'s (2016) conclusion that loneliness can negatively affect caregivers, but caregiving can have a positive side when attributed with meaning. Indeed, as Nora further articulated, despite her painful loneliness, that experience was "a gift" that allowed her to grow as a person. 

“I felt tremendous loneliness during this period of my father's illness, it was perhaps the hardest trial I've been through in my life, but also the greatest, harsh gift […] you become human through these experiences”. 

Discussion 

The present study explored the experience of loneliness among informal caregivers of cancer patients. The findings align with previous research (e.g., Gray et al., 2019; Yanugas, et al., 2018), indicating that a lack of emotional support leads to increased isolation, disconnection, and vulnerability. Additionally, similar to other studies (e.g., Zarzyki et al., 2023), participants find meaning and purpose in overcoming caregiving challenges. This is the first qualitative study on this topic in Greece. While the themes were clearly identified, a limitation to consider is the exploration of caregivers' experiences at different stages of caregiving. The study highlights the impact of loneliness on caregivers and the importance of strong support systems from institutions, oncology teams, clinicians as well as good enough familial and friendly relationships in managing this issue effectively. 

Acknowledgments 

We would like to express our appreciation to the caregivers who took part in this study. 

Literature 

 

Chong, E., Crowe, L., Mentor, K., Pandanaboyana, S., & Sharp, L. (2022). Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 31(1), 74. https://doi.org/10.1007/s00520-022-07468-7 

Eurofound. (2017). European Quality of Life Survey 2016: Quality of life, quality of public services, and quality of society, Publications Office of the European Union, Luxembourg. https://www.eurofound.europa.eu/en/publications/2018/european-quality-life-survey-2016 Kirk, D. L., 

Kabdebo, I., & Whitehead, L. (2022). Prevalence of distress and its associated factors among caregivers of people diagnosed with cancer: A cross-sectional study. Journal of clinical nursing, 31(23-24), 3402–3413. https://doi.org/10.1111/jocn.16167 

Rodenbach, R. A., Norton, S. A., Wittink, M. N., Mohile, S., Prigerson, H. G., Duberstein, P. R., & Epstein, R. M. (2019). When chemotherapy fails: Emotionally charged experiences faced by family caregivers of patients with advanced cancer. Patient education and counseling, 102(5), 909–915. https://doi.org/10.1016/j.pec.2018.12.014 

Roth, D., Fredman, L., Haley, W. (2015). Informal Caregiving and Its Impact on Health: A Reappraisal From Population-Based Studies. The Gerontologist. 55, 309-319. 10.1093/geront/gnu177 

Smith, J. A., Flowers, P., & Larkin, M. (2021). Interpretative Phenomenological Analysis: Theory, Method and Research. (Second ed.). 

Smith, M & Kuretich, C. (2023, April). Informal caregiving: Measuring the cost and reducing the burden. Society of Actuaries. https://www.soa.org/498ea3/globalassets/assets/files/resources/research-report/2023/informal-caregiving-reducing-burden.pdf 

Theißen T, Ullrich A, Oechsle K, et al. (2024). Being an informal caregiver – strengthening resources: mixed methods evaluation of a psychoeducational intervention supporting informal caregivers in palliative care. BMC Palliative Care. 23,95. https://doi.org/10.1186/s12904-024-01428-0. 

Vasileiou K, Barnett J, Barreto M, et al. (2017). Experiences of Loneliness Associated with Being an Informal Caregiver: A Qualitative Investigation. Frontiers in Psychology, (8), 585. doi: 10.3389/fpsyg.2017.00585