A qualitative exploration of the unmet psychosocial rehabilitation needs of cancer survivors in China

Abstract

Objective: This study explores the unmet psychosocial rehabilitation needs of cancer survivors.Methods: Sixty-eight cancer survivors from the Shanghai Cancer Rehabilitation Club in China participated in one of the eight focus groups. These were transcribed verbatim, coded using thematic analysis and analysed using NVivo 10.Results: Five main themes were identified: the need for (1) better information: Chinese cancer survivors find it difficult to sort and evaluate the overwhelming mass of information with which they are confronted; (2) psychological support: survivors fear cancer relapse and neighbours' discrimination against them; support from other cancer survivors can relieve the stress; (3) support for survivors' families: like the survivors, family members are under great but usually unacknowledged pressure; (4) improved health and medical services: community health service centres provide little medical, informational or psychological support for cancer survivors, who seek and expect more communication with doctors; and (5) assistance with the financial burden: costs of treatment and lack of adequate medical insurance cause substantial financial pressure for survivors.Conclusions: This study shows that, in addition to their illness, Chinese cancer survivors experience a range of stresses related to their financial circumstances, lack of reliable and summarised information, poor access to support and services (including for their families) and discrimination. Support from families seems to improve survivors' ability to cope. Cancer survivors (and their families) need an integrated package of support from their families, doctors and other service providers, hospitals and communities. These findings can inform approaches to continuing care for cancer survivors.

Fear of cancer recurrence: A qualitative systematic review and meta-synthesis of patients' experiences

“…(De Vries et al, 2014); • "Another cancer survivor telling me 'it's okay, don't worry ', would be such a great comfort and I wouldn't feel scared anymore." (Wang et al, 2016) We also found combined action tendencies, holding awareness of approaching and avoiding at the same time, in the discourse of some participants, as seen in the following examples:…”

Information needs of the Chinese community affected by cancer: A systematic review

“…All articles (100.0%) indicated patients' need for cancer‐specific information, 88.5% of articles reported need for treatment‐related information, 88.5% for prognosis information, 61.5% for follow up/rehabilitation information (particularly information on diet/nutrition, physical activity and complementary medicine), 53.8% for surveillance and health information, 50.0% for coping information, 15.4% for interpersonal/social information, 11.5% for financial/legal information, 50.0% for health system information, and 23.1% for body image/sexuality information. While more than half of the studies reported information needs in the areas of cancer and its treatment as well as navigation of the health system, fewer studies indicated unmet needs in interpersonal relationships (eg, effects of cancer on family, friends, and caregivers), financial/legal (eg, insurance and advanced directives), or body image and sexuality …”

“…As expected, the most frequent reported information needs through the diagnosis and treatment phases were in the cancer‐specific information, treatment‐related information , and prognosis information categories. In addition to these, frequently cited information needs during the post‐treatment/survivorship phase included follow up/rehabilitation , surveillance and health , health system , and coping information . More specifically, many patient and survivor participants wanted information on diet/nutrition, physical activity and complementary medicine.…”

“…Information about how to identify the signs and symptoms of a cancer recurrence was also desired. Though less prevalent, information needs related to interpersonal/social, financial/legal and body image/sexuality aspects were also raised during the post‐treatment/survivorship phase.…”

Cancer as a chronic disease — a psychological perspective

“…Including psychosocial intervention in a rehabilitation program increases the quality of a patient's life [49] and family support improves their ability to cope with stress [50]. Korstjens et al [51] indicate five main areas requiring consideration in psychosocial rehabilitation: continuous support and information about rehabilitation, psychological support, support of the family, improved health and medical services and help with financial burdens.…”