Insights on emotional distress following cancer, sources of support and the unmet needs in a setting with limited supportive care services for people living with cancer

INTRODUCTION: Delivery of supportive cancer care is often deemed a low priority in resource-limited settings. We aimed to explore the sources of emotional distress, the related support and the unmet needs of cancer survivors in Malaysia, where cancer survivorship services are presently limited.

METHOD: Twenty focus group discussions were conducted with 102 cancer patients from diverse ethnic and socioeconomic backgrounds. Thematic analyses were performed.

RESULTS: Patient narratives suggested that emotional distress arose from direct and indirect stressors. Direct stressors comprised physical and cognitive side effects of cancer surgery and therapies, and fear of recurrence. Indirect stressors included worry over dependent family members, financial distress following cancer, working with cancer and lack of practical support at home. Distress from altered physical appearances, fear of recurrence and lack of practical support were mainly raised by women, implying that men and women may have disproportionate emotional needs. Emotional support largely came from informal sources including self, family, friends and religion. While formal emotional support from professional counsellors and cancer support groups was acknowledged as important, it appeared to be largely lacking. Unmet needs in coping with fear of recurrence, financial distress, workplace discrimination and household chores were particularly highlighted.

CONCLUSION: The unmet needs revealed in this study provide insights to initiate actionable changes to improve the emotional wellbeing of people living with cancer in settings where cancer survivorship services are still in its infancy.