Indian Cancer Patients’ Needs, Perceptions of, and Expectations from their Support Network: a Qualitative Study

• Published in: Journal of cancer education 2020-06, Vol.35 (3), p.462-469
• Main Authors: Chawak, Shweta, Chittem, Mahati, Butow, Phyllis, Huilgol, Nagraj
• Format: Article
• Language: English
• Subjects: Adaptation, Psychological; Adult; Aged; Biomedical and Life Sciences; Biomedicine; Cancer; Cancer Research; Caregivers - psychology; Communication; Coping; Emotions; Families & family life; Female; Humans; India - epidemiology; Interviews; Male; Middle Aged; Motivation; Needs Assessment - statistics & numerical data; Neoplasms - epidemiology; Neoplasms - psychology; Neoplasms - therapy; Networks; Patient Preference; Patients; Perception; Pharmacology/Toxicology; Qualitative Research; Self-Help Groups - statistics & numerical data; Semi Structured Interviews; Social support; Social Support Groups
• ISSN: 0885-8195; 1543-0154
• DOI: 10.1007/s13187-019-1483-4

Psycho-oncology research in India reveals that family caregivers and oncologists are primary medical decision-makers frequently acting on behalf of the patient. Thus, patients are rarely asked about their wants and needs. This study aimed to understand Indian cancer patients’ needs and expectations from their support network. Twenty-six cancer patients participated in semi-structured interviews exploring patients’ needs, perceptions of their support network and the type of support they would prefer, and their experiences of receiving this support. The interviews were analyzed using Interpretive Phenomenological Analysis. Emergent themes included: (i) role of the oncologist: being the primary medical decision-maker, communicating in a style consistent with patient preferences; (ii) role of the immediate family: being emotionally available, helping with navigating the hospital system, aiding in medical adherence; (iii) role of relatives and friends: giving advice and providing tangible aid and services; and (iv) role of other cancer patients: helping with coping with the illness. The study highlights Indian patients’ ability to define their supportive network and assign specific roles to them. The study implies the need to develop communication training programs and peer-to-peer support groups to address patients’ unmet communication needs and aid in coping.