Janelle V. Levesque

Couples coping with cancer: exploration of theoretical frameworks from dyadic studies

A diagnosis of cancer and subsequent treatment are distressing not only for the person directly affected, but also for their intimate partner. The aim of this review is to (a) identify the main theoretical frameworks underpinning research addressing dyadic coping among couples affected by cancer, (b) summarise the evidence supporting the concepts described in these theoretical frameworks, and (c) examine the similarities and differences between these theoretical perspectives.

Parental Cancer: Catalyst for Positive Growth and Change

Cancer is a disease that affects the entire family, with each member having unique psychological needs. To date, there has been limited research into the effect of parental cancer on adult children. Furthermore, existing research has largely overlooked the possibility of positive psychological growth in the adult offspring of cancer patients. To investigate the perceived benefits arising from parental cancer, 11 interviews were undertaken with adults whose parents had been diagnosed with cancer, to discuss their experiences of their parent’s illness, and their evaluation of both the positive and negative changes that had arisen. All participants were able to identify positive outcomes in direct response to their parent’s cancer. Frequently suggested changes included improved relationships with their sick parent, an increased emphasis on family, revised life priorities, and personal development. The implications of these findings, their link to posttraumatic growth theory, and avenues for future research are discussed.

A parallel-group, randomised controlled trial of a multimedia, self-directed, coping skills training intervention for patients with cancer and their partners: Design and rationale

Introduction Coping skills training interventions have been found to be efficacious in helping both patients and their partners manage the physical and emotional challenges they face following a cancer diagnosis. However, many of these interventions are costly and not sustainable. To overcome these issues, a self-directed format is increasingly used. The efficacy of self-directed interventions for patients has been supported; however, no study has reported on the outcomes for their partners. This study will test the efficacy of Coping-Together—a multimedia, self-directed, coping skills training intervention for patients with cancer and their partners. Methods and analysis The proposed three-group, parallel, randomised controlled trial will recruit patients diagnosed in the past 4 months with breast, prostate, colorectal cancer or melanoma through their treating clinician. Patients and their partners will be randomised to (1) a minimal ethical care (MEC) condition—selected Cancer Council New South Wales booklets and a brochure for the Cancer Council Helpline, (2) Coping-Together generic—MEC materials, the six Coping-Together booklets and DVD, the Cancer Council Queensland relaxation audio CD and login to the Coping-Together website or (3) Coping-Together tailored—MEC materials, the Coping-Together DVD, the login to the website and only those Coping-Together booklet sections that pertain to their direct concerns. Anxiety (primary outcome), distress, depression, dyadic adjustment, quality of life, illness or caregiving appraisal, self-efficacy and dyadic and individual coping will be assessed before receiving the study material (ie, baseline) and again at 3, 6 and 12 months postbaseline. Intention-to-treat and per protocol analysis will be conducted. Ethics and dissemination This study has been approved by the relevant local area health and University ethics committees. Study findings will be disseminated not only through peer-reviewed publications and conference presentations but also through educational outreach visits, publication of lay research summaries in consumer newsletters and publications targeting clinicians. Trial registration Australian New Zealand Clinical Trials Registry ACTRN12613000491763 (03/05/2013)

A systematic review of psychotherapeutic interventions for women with metastatic breast cancer: context matters

To summarise the evidence‐base of psychological interventions for women with metastatic breast cancer, by mode of delivery (group, individual, or low‐intensity interventions). To synthesise data regarding core intervention‐elements (eg, intervention duration) and context factors (trial setting, uptake and adherence, and demographic characteristics).

Health professionals’ opinions on supporting a cancer biobank: identification of barriers to combat biobanking pitfalls

Although rarely acknowledged, a successful biobank is highly dependent on the support of the health professionals who assist the biobank in all aspects of its activities. In many cases, the lack of health professional support can be a limiting factor in the biobanking process of collecting and processing high-quality biospecimens. The aim of this study was to determine the attitudes of health professionals towards cancer biobanking. Using a 5-point Likert scale questionnaire, important aspects of biobanking, including accrual, quality, knowledge, responsiveness, impact, access, trust, governance and accreditation, were investigated. In total, 95 of 124 health and medical practitioners who were approached participated in this study (77% response rate). Health professionals in general supported the aims of biobanking with 56% of participants showing willingness to create a biobank and recruit donors (accrual), 85% understanding the importance in the storage and distribution of biospecimens (quality), 88% having an appreciation for the role of a biobank in furthering cancer research (knowledge), 70% showing awareness of the use of biospecimens in future research initiatives (responsiveness) and 73% demonstrating support for a biobank with proper control, authority and credibility measures in place (governance and accreditation). Overall, provided that proper information about the activities of the biobank and researcher access was transparent, health professionals were very willing to support cancer biobanking. These findings may assist in developing strategies for the establishment and maintenance of biobanks and aid the implementation of more effective policies and procedures to embed biobanking into routine hospital practices.

A Qualitative Investigation of Health Care Professionals’, Patients’ and Partners’ Views on Psychosocial Issues and Related Interventions for Couples Coping with Cancer

Introduction There is growing evidence that cancer affects couples as an interdependent system and that couple-based psychosocial interventions are efficacious in reducing distress and improving coping skills. However, adoption of a couples-focused approach into cancer care is limited. Previous research has shown that patients and partners hold differing views from health care professionals (HCPs) regarding their psychosocial needs, and HCPs from different disciplines also hold divergent views regarding couples’ psychosocial needs. This study aimed to explore the perspectives of HCPs and couples on the provision of couple-focused psychosocial care in routine cancer services. Methods A qualitative study using semi-structured interviews was undertaken with 20 HCPs (medical oncologists, nurses, psycho-oncology professionals) and 20 couples where one member had been diagnosed with cancer (breast, prostate, head/neck, bowel, multiple myeloma). Interviews were analysed using the framework approach. Results Three core themes were identified: “How Do Couples Cope with Cancer?” emphasised the positive and negative coping strategies used by couples, and highlighted that partners perceived a lack of engagement by HCPs. “What Is Couple-focused Psychosocial Care for People with Cancer?” described varying perspectives regarding the value of couple-focused psychosocial care and variation in the types of support couples need among HCPs and couples. Whereas most couples did not perceive a need for specialist couple-focused support and interventions, most HCPs felt couple-focused psychosocial care was necessary. “How Can Couple-Focused Psychosocial Care be Improved?” described couples’ view of a need for better provision of information, and the importance of their relationship with oncology clinicians. HCPs identified a lack of confidence in responding to the emotional needs of couples, and barriers to providing psychosocial care, including challenges identifying distress (through screening) and referring distressed individuals/couples for specialist assessment. Conclusions The three core themes revealed discrepancies about couple-focused psychosocial care between HCPs and couples, and HCPs from different professional backgrounds, and several barriers to the provision of psychosocial care for couples. Despite HCPs and couples acknowledging that a couple-focused approach to psycho-social support was potentially beneficial, the majority of couples did not feel they needed specific couple-focused interventions. These issues and recommendations for future research are discussed.

The Impact of Cancer and Chronic Conditions on Caregivers and Family Members

Caregiving by a family member or a friend is critical in maintaining and improving the health and well-being of individuals living with cancer, and in reducing demands on the health care system. The increased prevalence of cancer and co-morbidities is applying pressure on already stretched cancer care resources and high-quality cancer care now relies on caregivers taking on more and more complex illness management roles (once performed by health care professionals). Caregivers provide about 70–80 % of patients’ cancer care, the economic value of which is estimated to be at least in the millions. Although caregiving is a valued societal and financial resource, caregivers remain largely a hidden workforce. Caregivers often take on their roles and responsibilities with little to no formal training, leading to high levels of burden and lower quality of life for both the caregivers and the person they are caring for. Cancer caregivers are a particularly vulnerable sub-group, as they report higher burden than caregivers for individuals with diabetes or frail elders. Although across caregiver studies it might be assumed that many of the patients cared for have co-morbidities, this information is not always explicit and there are no studies specifically examining the burden endured by caregivers of patients with cancer and co-morbidities. Therefore, the purpose of this chapter is to summarize what is known about cancer caregiving and note how these findings might be extrapolated to begin to understand the issues faced by caregivers of patients with cancer and co-morbidities. The chapter provides an overview of caregivers’ roles in cancer care and the impact of this involvement on caregivers’ health and functioning; their patterns of health care services utilization; a description of the type of support caregivers require more of (unmet needs); and the effectiveness of interventions that can support caregivers throughout the cancer trajectory. A discussion of future directions for research and practice concludes this chapter.

Disease isolation: The challenges faced by mothers living with multiple myeloma in rural and regional Australia

PURPOSE To explore the interrelationship of two challenging aspects of the cancer experience: the diagnosis and experience of younger women living with multiple myeloma, and their geographical disadvantage. METHOD A cross-sectional retrospective qualitative methodology was employed. Five women with dependent children and a diagnosis of myeloma, living in rural and regional Australia, were interviewed using a semi-structured technique. Interpretative phenomenological analysis provided the foundation for the data analysis and interpretation. RESULTS The central concept of disease isolation emerged from the data and captured the interrelationship of the experience of living with a rare cancer, while living in a rural and regional area of Australia. Three strong themes emerged: 1) isolation due to living with a rare cancer, 2) isolation within the myeloma population, and 3) isolation due to the disease effects and treatment. In the context of these results, isolation depicted the sense of being alone or separated, both physically and psychologically, from potential sources of support, and of being different from others (both patients with cancer and patients with myeloma), which presented barriers to accessing support. CONCLUSION The interrelationship of geographical isolation and living with multiple myeloma underpins the core issues relating to the main themes. Understanding the issues confronting younger women with myeloma living in rural and regional of Australia may assist health professionals to improve support for women in this situation.

Do men with prostate cancer and their partners receive the information they need for optimal illness self-management in the immediate post-diagnostic phase?

Objective: To (a) determine whether the information provided to men with prostate cancer and their partners in the immediate postdiagnostic phase met their needs; and (b) examine patient and partner satisfaction with the information received. Methods: Pre-intervention survey data from a pilot randomized controlled trial of a self-directed coping skills intervention involving 42 patients with prostate cancer, and their partners were collected to examine their psychosocial concerns/needs. Results: The main concerns for patients and partners were psychosocial in nature such as managing emotions, concern about the future, and losing control. Overall, patients and partners received most information about tests and treatment options. Partners reported receiving significantly less information about support services (P = 0.03) and self-care strategies (P = 0.03) compared to patients. Partners also reported being significantly less satisfied with the information they received (P = 0.007). Conclusions: Whereas medical information is routinely given, patients and partners may benefit from greater information about psychosocial issues arising from cancer. Despite increased recognition of partner′s information needs these still remain unmet.

Predictors of Benefit Finding in the Adult Children of Patients with Cancer

This study aimed to investigate the predictors of benefit finding in 311 adult children of patients with cancer. Participants completed a comprehensive online/pen-and-paper survey measuring benefit finding, gender of parent, outcome and duration of illness, caregiving experience, and emotional experiences including reaction to diagnosis and grief and loss. Greater benefit finding was positively associated with stronger emotional experiences, satisfaction with the caregiving role, and outcome of parental cancer, explaining 15.3% of the variance in benefit finding. Higher emotional reactions and outcome of parental cancer as significant predictors of parental cancer provide some support for the applicability of theories of post-traumatic growth to this cohort.