Needs of family caregivers of advanced cancer patients: a survey in Shanghai of China

Abstract

It is important to understand the unmet needs of family caregivers of advanced cancer patients for developing and refining services to address the identified gaps in cancer care. To explore their needs in Chinese mainland and the possible factors associated with their needs, a self-developed questionnaire was used to survey a sample of 649 participants in 15 hospitals of Shanghai. The data were analysed using descriptive statistics, factor analysis, t-test, one-way ANOVA, and Fishers least significant difference t-test. All statistical analyses were performed using SPSS 13.0. Seven dimensions of needs (maintaining health, support from healthcare professionals, knowledge about the disease and treatment, support on funeral, information on hospice care, psychological support for patients and symptoms control for patients) were extracted from the results by factor analysis. The dimension with the highest score was 'knowledge about the disease and treatment' (4.37), and that with the lowest score named 'support on funeral' (2.85). The results showed that the factors including burden of payment for treatment, former caregiving experience of family caregivers and length of caregiving time were associated with their needs. Cancer services need to consider how to tailor resources and interventions to meet these needs of family caregivers of advanced cancer patients.

Chinese version of the Cancer Support Person’s Unmet Needs Survey-Sort Form: A psychometric study

“…Chinese culture traditionally follows a strong family-oriented ideology, with several generations usually residing together under one roof (Zhai & Qiu, 2007). Accordingly, caregivers and patients are likely to be well supported and cared for by family members (Cui et al, 2014). Thus, caregivers who are currently employed may be able to continue working as normal, or close to normal, owing to the availability of strong family support at home.…”

“…Independent-sample t tests were conducted to assess hypothesised differences in the unmet needs of caregivers across a number of characteristics found in previous literature to have an impact on caregiver's unmet needs (Alptekin, Gönüllü, Yücel, & Yaris, 2010;Cui et al, 2014;Lambert et al, 2012;Washington, Pike, Demiris, & Oliver, 2015). We hypothesised that caregivers who were middle-aged or older (age ≥45 years) (Truelsen, Begg, & Mathers, 2000), were female, self-reported as unhealthy, had not received a college education, were not involved in paid work, had been supporting their cancer patient for <1 year, were providing day-to-day care to the cancer patient, and were caring for a cancer patient with advanced disease would have higher rates of unmet need across all domains.…”

“…Cancer caregivers are defined as individuals (e.g., spouses, adult offspring, parents and friends) who devote a significant amount of time and energy to take care of their loved ones who have been diagnosed with cancer (Kent et al, ). In China, cancer caregivers provide various practical support to the patient, including day‐to‐day physical and psychological care, assisting with medical decision‐making, communication with healthcare staff, searching for information and solving financial issues (Cui, Song, Zhou, Meng, & Zhao, ; Gu, Chen, Liu, Zhang, & Cheng, ; Xie, Su, Liu, Wang, & Zhang, ; Yang et al, ; Zhang, Xie, Xie, & Liu, ). Consequently, cancer caregivers often experience a number of negative physical and psychological burdens, including reduced quality of life (QOL; Applebaum & Breitbart, ; Bevans & Sternberg, ; Lapid et al, ; Stenberg, Ruland, & Miaskowski, ; Yang et al, ), as a result of their caregiving duties.…”

Occupational stress, survivorship issues and key themes in this issue: occupational stress, survivorship interventions, cancer in Chinese populations

“…Cui et al . (; pp. 562–569) examine the issue of care giver needs, based on a survey in Shanghai – this adds to a growing body of literature describing patterns of care and survivorship in China.…”

“…570-581) examine patterns of accessing services in the North West of England and describe some important patterns relating to this significant sub-group of the population. Cui et al (2014;pp. 562-569) examine the issue of care giver needs, based on a survey in Shanghai -this adds to a growing body of literature describing patterns of care and survivorship in China.…”