| Author: | Bu, Xiaofan |
| Title: | Effects of a theory-driven, disclosure-based family support programme on fear of cancer recurrence for couples coping with breast cancer: a multi-centre randomised controlled trial |
| Advisors: | Chung, O. K. Joyce (SN) Leung, Y. M. Angela (SN) Leung, Y. P. Doris (SN) |
| Degree: | Ph.D. |
| Year: | 2026 |
| Department: | School of Nursing |
| Pages: | xxvii, 422 pages : color illustrations |
| Language: | English |
| Abstract: | Background Breast cancer remains the most commonly diagnosed malignancy among women worldwide. Although the risk of recurrence varies, concerns about disease return or progression are pervasive after diagnosis. Fear of cancer recurrence (FCR) represents a leading unmet need for women with breast cancer and their partners, and evidence has indicated that FCR levels are correlated within couples. Although numerous interventions have focused on women's FCR, relatively few have been designed specifically for partners. Given the interdependent nature of FCR between women and their partners, addressing partners' FCR or adopting a dyadic approach may contribute to reducing women's FCR. Consequently, interventions that actively engage both members of the couple are needed. Aim We aimed to develop a theory-driven, disclosure-based family support programme for women with breast cancer and their partners and to evaluate its effectiveness on FCR, social constraint, intrusive thoughts, avoidance, anxiety and stigma at six weeks post-intervention (T1) and 12-week follow-up (T2). Methods This doctoral study was divided into four phases. Phase I involved three reviews: two reviews examining risk factors of FCR among women with breast cancer and their caregivers, respectively, and a meta-analytic review assessing the effectiveness of family-involvement interventions for FCR management in this population. The findings informed the subsequent development and implementation of the FCR intervention. Phase II focused on the development and validation of scales for assessing partners' affiliate stigma and social constraints as outcome measures. The Affiliate Stigma Scale for partners was developed through a literature review and semi-structured interviews, followed by psychometric evaluation including assessments of content validity, structural validity, construct validity, internal consistency and test-retest reliability. The Social Constraints Scale (SCS), originally designed for adults with cancer, was adapted for use with partners and underwent validation using the same psychometric procedures. Phase III centred on the development of the family support programme, informed by the findings of phase I and guided by Simonelli's integrative model. The content of the programme was reviewed and validated by a panel of five experts. A pre-post pilot study was conducted with 15 couples coping with breast cancer to assess feasibility, acceptability and preliminary effects. Insights from this pilot study informed modifications to the intervention protocol and the implementation strategy for phase IV. Phase IV comprised a two-arm, parallel-group randomised controlled trial (RCT) involving 90 couples coping with breast cancer, who were randomly allocated to receive either the 6-week family support programme delivered via WeChat (n = 45) or 6-week of follow-up WeChat calls (n = 45). Generalised linear mixed models (GLMMs) were employed to evaluate the effectiveness of the family support programme, and Cohen's d was calculated and used in estimating between-group effect sizes for women and their partners at T1 and T2. In addition, couple-based qualitative interviews were undertaken as process evaluation, and data were analysed using thematic analysis. Results Phase I identified social constraints as a common factor associated with FCR in both women with breast cancer and their caregivers. The meta-analytic review concluded that family-involvement interventions, particularly those combining disclosure with education or counselling tailored to specific needs, produced significant short-term reductions in women's FCR. However, the evidence for their effectiveness among caregivers remains insufficient. Phase II resulted in the development of the Affiliate Stigma Scale, comprising 24 items across four domains: internal stigma, social isolation, perceived stigma and reactions. The scale demonstrated strong reliability and construct validity, with the total score showing a significant positive correlation with caregiving burden and significant negative correlations with self-esteem and social support. The SCS was adapted for partners of adults with cancer, covering three domains: alienation, health concern minimisation and emotional concealment. Cronbach's α values ranged from 0.719 to 0.863. The overall score was significantly and positively correlated with FCR and communication difficulties and negatively correlated with psychological resilience. Phase III involved the development of the family support programme, informed by the findings of the three reviews and guided by Simonelli's model. Content validity was rated at 1.0. A pre-post pilot study showed the programme's feasibility and favourable effects in reducing FCR, intrusive thoughts, stigma and anxiety among women and their partners. Social constraints also decreased significantly among partners. Qualitative findings further supported the programme's acceptability. Based on the findings in pilot study, modifications were made prior to implementation in the RCT. Phase IV assessed the programme through a two-arm RCT. GLMM analyses indicated that, compared with the follow-up WeChat-call group, the family support programme produced short-term effects in reducing women's social constraints, intrusive thoughts and anxiety and their partners' FCR. Qualitative process evaluation included 23 interviews, from which four themes were identified: the comprehensive and practical features of the intervention, perceived benefits, strategies to promote and sustain the programme and challenges in its implementation and sustainability. Conclusion The six-week family support programme was developed and validated. Delivered via WeChat, the programme demonstrated short-term effectiveness in reducing social constraints, intrusive thoughts and anxiety among women and in reducing FCR in partners. These findings offer important insights to guide the future development of interventions aimed at mitigating FCR in this population. |
| Rights: | All rights reserved |
| Access: | open access |
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