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

  • Shweta Chawak
  • Mahati ChittemEmail author
  • Phyllis Butow
  • Nagraj Huilgol


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.


Psycho-oncology Support network Primary and secondary caregivers Indian cancer patients Qualitative 



This research work was supported by the Ministry of Human Resource Development, Government of India, India. MPhil scholarship was awarded to the first author.

Compliance with Ethical Standards

Conflict of Interest

The authors declare that they have no conflict of interest.

Research Involving Human Participants

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

Ethics Approval

Ethics approval for the study was received from the Institute Ethics Committee, Indian Institute of Technology Hyderabad, Hyderabad, India, and the ethics committee of Dr. Balabhai Nanavati Hospital, Mumbai, India.


  1. 1.
    Chaturvedi SK, Strohschein FJ, Saraf G, Loiselle CG (2014) Communication in cancer care: psycho-social, interactional, and cultural issues. A general overview and the example of India. Frontiers in psychology 5:1332Google Scholar
  2. 2.
    Arora NK, Rutten LF, Gustafson DH, Moser R, Hawkins RP (2007) Perceived helpfulness and impact of social support provided by family, friends, and health care providers to women newly diagnosed with breast cancer. Psycho-Oncology 16:474–486. PubMedGoogle Scholar
  3. 3.
    Datta SS, Tripathi L, Varghese R, Logan J, Gessler S, Chatterjee S, Bhaumik J, Menon U (2016) Pivotal role of families in doctor–patient communication in oncology: a qualitative study of patients, their relatives and cancer clinicians. Eur J Cancer Care 26.
  4. 4.
    Chaturvedi SK, Loiselle CG, Chandra PS (2009) Communication with relatives and collusion in palliative care: a cross-cultural perspective. Indian J Palliat Care 15:2–9. PubMedPubMedCentralGoogle Scholar
  5. 5.
    Chittem M, Butow PN (2015) Responding to family requests for nondisclosure: the impact of oncologists’ cultural background. J Cancer Res Ther 11:174–180. PubMedGoogle Scholar
  6. 6.
    Chittem M, Norman P, Harris PR (2013) Relationship between perceived diagnostic disclosure, patient characteristics, psychological distress and illness perceptions in Indian cancer patients. Psycho-Oncology 22:1375–1380. PubMedGoogle Scholar
  7. 7.
    Chittem M, Norman P, Harris PR (2015) Illness representations and psychological distress in Indian patients with cancer: does being aware of one's cancer diagnosis make a difference? Psycho-Oncology 24(12):1694–1700PubMedGoogle Scholar
  8. 8.
    Angel A, Lam W, Tsang J, Yau T-k, Soong I, WinnieYeo JS, Ho WM, Wong K-y, Kwong A, Suen D, Sze W-K, Ng A, Girgis A, Fielding R (2012) Supportive care needs in Hong Kong Chinese women confronting advanced breast cancer. Psycho-Oncology 22:1144–1151. Google Scholar
  9. 9.
    Lam WWT, Au AHY, Wong JHF, Lehmann C, Koch U, Fielding R, Mehnert A (2011) Unmet supportive care needs: a cross-cultural comparison between Hong Kong Chinese and German Caucasian women with breast cancer. Breast Cancer Res Treat 130(2):531–541PubMedGoogle Scholar
  10. 10.
    Smith JA, Osborn M (2004) Interpretative phenomenological analysis. In G. M. Breakwell (Ed.), Doing social psychology research. Leicester, England: British Psychological Society; Malden: Blackwell Publishing, pp. 229–254Google Scholar
  11. 11.
    Smith JA, Osborn M (2015) Interpretative phenomenological analysis as a useful methodology for research on the lived experience of pain. Br J Pain 9(1):41–42PubMedPubMedCentralGoogle Scholar
  12. 12.
    Deber RB, Kraetschmer N, Urowitz S, Sharpe N (2007) Do people want to be autonomous patients? Preferred roles in treatment decision-making in several patient populations. Health Expect 10(3):248–258PubMedPubMedCentralGoogle Scholar
  13. 13.
    Mazur DJ, Hickam DH, Mazur MD, Mazur MD (2005) The role of doctor’s opinion in shared decision making: what does shared decision making really mean when considering invasive medical procedures? Health Expect 8:97–102. PubMedPubMedCentralGoogle Scholar
  14. 14.
    Schouten BC, Meeuwesen L (2006) Cultural differences in medical communication: a review of the literature. Patient Educ Couns 64:21–34PubMedGoogle Scholar
  15. 15.
    Akechi T, Okuyama T, Endo C, Sagawa R, Uchida M, Nakaguchi T, Akazawa T, Yamashita H, Toyama T, Furukawa TA (2011) Patient’s perceived need and psychological distress and/or quality of life in ambulatory breast cancer patients in Japan. Psycho-Oncology 20:497–505. PubMedGoogle Scholar
  16. 16.
    Lukhmana S, Bhasin SK, Chhabra P, Bhatia MS (2015) Family caregivers’ burden: a hospital based study in 2010 among cancer patients from Delhi. Indian J Cancer 52:146–151PubMedGoogle Scholar
  17. 17.
    Antony L, George L, Jose TT (2018) Stress, coping, and lived experiences among caregivers of cancer patients on palliative care: a mixed method research. Indian J Palliat Care 24:313PubMedPubMedCentralGoogle Scholar
  18. 18.
    Padmaja G, Vanlalhruaii C, Suvashisa R, Tiamongla, Kopparty S (2017) Quality of life of patients with cancer: a determinant of the quality of life of their family caregivers. J Cancer Educ 32:655–661PubMedGoogle Scholar
  19. 19.
    Zhang A, Siminoff LA (2003) Silence and cancer: why do families and patients fail to communicate? Health Commun 15(4):415–429PubMedGoogle Scholar
  20. 20.
    Ussher J, Kirsten L, Butow PN, Sandoval M (2006) What do cancer support groups provide which other supportive relationships do not? The experience of peer support groups for people with cancer. Soc Sci Med 62(10):2565–2576PubMedGoogle Scholar
  21. 21.
    Ashbury F, Cameron C, Mercer SL, Fitch M, Nielsen E (1998) One-on-one peer support and quality of life for breast cancer patients. Patient Educ Couns 35:89–100PubMedGoogle Scholar
  22. 22.
    Helgeson VS, Cohen S (1996) Social support and adjustment to cancer: reconciling descriptive, correlational and intervention research. Health Psychol 15(2):135–148PubMedGoogle Scholar
  23. 23.
    Festinger LA (1954) A theory of social comparison processes. Hum Relat 7(2):117–140Google Scholar
  24. 24.
    Vaidyanathan P (2017) The spirit of Mumbai (Blog Post). Retrieved from
  25. 25.
    Chatterjee S, Choudhury N (2011) Medical communication skills training in the Indian setting: need of the hour. Asian J Transfus Sci 5(1):8–10PubMedPubMedCentralGoogle Scholar

Copyright information

© American Association for Cancer Education 2019

Authors and Affiliations

  1. 1.Department of Liberal ArtsIndian Institute of Technology HyderabadKandiIndia
  2. 2.School of PsychologyUniversity of SydneySydneyAustralia
  3. 3.Division of Radiation OncologyNanavati Super Specialty HospitalMumbaiIndia

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