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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

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Abstract

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.

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Availability of data and material

Data that supports the finding of this study is available upon reasonable request from the authors.

Code availability

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Funding

This study was funded through an unrestricted educational grant from the Pharmaceutical Association of Malaysia (PhAMA).

Author information

Authors and Affiliations

  1. Centre for Epidemiology and Evidence-Based Practice, Department of Social and Preventive Medicine, Faculty of Medicine, University of Malaya, 50603, Kuala Lumpur, Malaysia

    Harenthri Devy Alagir Rajah, Yek-Ching Kong, Li-Ping Wong & Nirmala Bhoo-Pathy

  2. Faculty of Health Sciences, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia

    Harenthri Devy Alagir Rajah & Caryn Mei Hsien Chan

  3. Department of Radiotherapy and Oncology, Kuala Lumpur Hospital, 50586, Kuala Lumpur, Malaysia

    Ros Suzanna Bustaman

  4. Department of Clinical Oncology, Faculty of Medicine, University of Malaya, 50603, Kuala Lumpur, Malaysia

    Gwo-Fuang Ho

  5. Subang Jaya Medical Centre, 47500, Subang Jaya, Malaysia

    Kelly Ming-Ying Lai & Cheng-Har Yip

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  1. Harenthri Devy Alagir Rajah
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Contributions

Harenthri Devy Alagir Rajah: data curation, formal analysis, data interpretation, writing—review and editing. Caryn Chan Mei Hsien: formal analysis, data interpretation, writing—review and editing. Yek-Ching Kong: data curation, writing—review and editing. Li-Ping Wong: data interpretation, writing—review and editing. Ros Suzanna Bustamam: data curation, writing—review and editing. Gwo-Fuang Ho: data curation, writing—review and editing. Kelly Ming-Ying Lai: data curation, writing—review and editing. Cheng-Har Yip: data curation, writing—review and editing. Nirmala Bhoo-Pathy: conceptualisation, funding acquisition, formal analysis, data interpretation, writing—review and editing.

Corresponding author

Correspondence to Nirmala Bhoo-Pathy.

Ethics declarations

Ethics approval

This study was performed in line with the principles of Helsinki Declaration. Ethics approval was granted by the National Medical Research Ethics Committee (MREC) and the respective institutional review boards. The study was approved by the Medical Research Ethics Committee (NMRR-17-3361-39122), University Malaya Medical Research Ethics Committee (201831-6061) and Ramsay Sime Darby Health Care Independent Ethics Committee (201809.2).

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Written informed consent was obtained from all participants.

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Informed consent

Informed consent was obtained from all study participants.

Conflict of interest

The author declare no competing interests.

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The funder had no role in the design of the study, collection of data, data analysis and interpretation, manuscript preparation or decision to publish.

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Implication for cancer survivors

Our findings will facilitate development of supportive care services addressing wider aspects of wellbeing following cancer.

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Rajah, H.D.A., Chan, C.M.H., Kong, YC. et al. 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. Support Care Cancer 29, 5811–5819 (2021). https://doi.org/10.1007/s00520-021-06148-2

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