Fear, worry and sadness: an exploratory study of psychological wellbeing in men caring for their partner with ovarian cancer.

PURPOSE: Ovarian cancer is the leading cause of death from female cancers in Australia with the majority of women presenting with advanced disease. The burden of caregiving is largely borne by male carers; however, little research has examined the challenges male ovarian cancer caregivers (MOCC) experience. This study aimed to explore the psychosocial wellbeing and cancer-related challenges experienced by MOCC. METHODS: A cross-sectional small-scale exploratory online survey study recruited 36 MOCC. The study questionnaire was comprised of the Generalised Anxiety Disorder Scale (GAD-7), Patient Health Questionnaire Depression Module (PHQ-9), Functional Assessment of Cancer Therapy Scale (FACT-G) Family Member, Fear of Cancer Recurrence Scale, Insomnia Severity Index (ISI), Functional Assessment of Chronic Illness Therapy Fatigue Scale (FACTIT-F) and Cancer-Related Challenges Scale (CRCS). RESULTS: The most common challenges ever experienced were worry about the future (91%), fear of metastasis (90%) and feeling worried or uncertain (88%). The most common current challenges were fear of cancer recurrence (75%), fear of metastasis (68%) and changes in sexual relationships (64%). Depression and anxiety were significantly correlated with all psychosocial variables highlighting the relationships between elements of wellbeing for MOCC. Clinical levels of fear of cancer recurrence were reported by 89% of MOCC. CONCLUSIONS: The challenges faced by MOCC are psychosocial in nature. There is a high correlation between anxiety and depression, and this coupled with the fear of disease recurrence indicates a greater need for screening of these issues, appropriate referral and development of support resources for this high-risk group of cancer carers.

The male perspective: A mixed methods study of the impact, unmet needs and challenges of caring for women with breast cancer.

OBJECTIVES: As a formative investigation toward the development of a supportive care intervention for male caregivers, this study explored the emotional impact, unmet needs and challenges experienced by men when caring for a woman with breast cancer. DESIGN: A cross-sectional mixed methods study, with an online survey and interviews. SAMPLE: A total of 89 participants completed the survey, of whom 13 completed interviews. The majority (93%) of participants were husbands of care recipients; of the care recipients, 75% had early stage breast cancer and 45% were diagnosed over 5 years ago. METHOD: Participants completed questionnaires assessing their emotional wellbeing, unmet needs and biopsychosocial challenges, with a sub-sample participating in subsequent interviews to elaborate on survey responses. FINDINGS: Emotional difficulty was reported by <25% of the sample, and 83% reported experiencing at least one unmet need (M = 81.5, SD = 33.2). Of the 39 biopsychosocial challenges presented, 100%, 86% and 73% reported "ever experiencing," "currently experiencing," and "ever needing help," respectively. Interviewed participants echoed the most reported needs and challenges as changes to sex life, fear of recurrence and lack of practical information. CONCLUSIONS: Male cancer caregivers experience diverse challenges and require psychological support and practical information using both online and offline approaches to support their caregiving responsibilities. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: Healthcare professionals can support male caregivers by: being aware of their information and psycho-social needs; directing caregivers to online interventions for additional information; and facilitating the provision of online psycho-sexual and FCR support.

Chinese-Australian women with breast cancer call for culturally appropriate information and improved communication with health professionals.

BACKGROUND: For culturally and linguistically diverse patients, breast cancer presents complex physical, psychosocial, and health care challenges, often exacerbated by a lack of culturally appropriate information and communication barriers with the treating team (even with the help of interpreters). AIM: This qualitative study aims to broadly explore the experience of breast cancer and coping strategies utilized by Chinese-Australian women. METHODS AND RESULTS: Twenty-four Chinese-Australian women with breast cancer participated in either a semi-structured interview or a focus group conducted in participants' preferred language, audio-recorded, transcribed, and subjected to thematic analysis. Two prominent themes emerged, related to information seeking, and communication with health care professionals. The theme of information needs and seeking highlighted unmet information needs and the multiple sources that are consulted for information. The second theme, communication with health care professionals, language barriers, and preferences, identified varying degrees of involvement in treatment decision-making, preference for information and interactions in Cantonese or Mandarin, and problems with interpreter services. CONCLUSION: Chinese women with breast cancer face significant challenges in obtaining adequate information and can feel excluded from treatment decision-making. Women in this study expressed their eagerness for obtaining accurate information and engaging in open communication with their doctors. There is a need for culturally sensitive information resources and decision aids to enhance communication between Chinese migrant patients with cancer and health care professionals. Clinician participation in cultural awareness training is also recommended.

Psychosocial Experiences, Challenges, and Coping Strategies of Chinese-Australian Women with Breast Cancer.

OBJECTIVE: Chinese migrant women with breast cancer are at risk of poorer psychosocial outcomes. However, little is known about the cancer-related challenges experienced by these women, or how they self-manage their concerns. This qualitative study aims to explore the experience of breast cancer for Chinese-Australian women and gain insight into their coping behaviors. METHODS: Twenty-four Chinese-Australian women, previously diagnosed with breast cancer, participated in a semi-structured interview or focus group session, conducted in the participant's preferred language. Qualitative data were subjected to thematic analysis. RESULTS: Three main themes emerged, reflecting the psychological impact of the diagnosis, the challenges experienced, and the use of social support and other coping behaviors. The theme of psychological impact highlighted the emotional toll of diagnosis and the ongoing anxiety surrounding the fear of cancer recurrence. The theme of challenges identified stressors relating to treatment side effects and the need for psychological support. The social support and coping theme identified the various levels of social support participants received and how Chinese-Australian women may limit their use of social support to protect others. Participants used several behavioral (e.g., diet and exercise) and cognitive (e.g., reframing) strategies to cope with their cancer experience. CONCLUSIONS: Chinese-Australian women with breast cancer face significant challenges that impact on their psychological well-being. Varying levels of social support, and the desire to protect others through self-sacrifice, may reflect the cultural expectations of women. The results highlight the need for cultural understanding when developing strategies that optimally support Chinese migrant women with breast cancer.

What Male Caregivers of Women With Breast Cancer Want in an Online Intervention: A Qualitative Study.

The diversity in cancer caregiver responsibilities often leaves caregivers feeling ill-prepared for their role. To inform the development of an online caregiver training intervention, we examined the views of men caring for a woman with breast cancer on intervention mode, timing, and content preferences. Thirteen men participated in a qualitative interview. The findings reveal that an online intervention should include educational content and psychological support, be interactive and personalized, and be available from the point of diagnosis. There is encouraging support for an online caregiver training intervention that covers numerous topics and is available for men to tailor how they use the content based on their individual needs.

The Unmet Supportive Care Needs of Arab Australian and Arab Jordanian Cancer Survivors: An International Comparative Survey.

BACKGROUND: Research exploring the unmet supportive care needs of Arab cancer survivors is limited, with most conducted with immigrant groups. No study has compared the unmet supportive care needs of immigrant Arab cancer survivors with Arab cancer survivors living in their native country. OBJECTIVE: To explore the unmet supportive care needs of both Arab Australian and Arab Jordanian cancer survivors. METHODS: Arab people living in Sydney, Australia, and Amman, Jordan, and diagnosed with cancer within the last 5 years were invited to complete a questionnaire that measured unmet supportive care needs, depression, and language acculturation. Multiple regression analysis was performed to identify predictors of unmet supportive care needs. RESULTS: Seventy-seven Arab Jordanian and 66 Arab Australian cancer survivors were recruited. Australian participants were older than their Jordanian counterparts (61.5 vs 52.3 years; P < .001) and reported higher levels of overall unmet needs (44.9 vs 36.1; P = .012). Controlling for age and stage of cancer diagnosis, higher levels of depression (ß = .34) and living in Australia (ß = .26) were significant predictors of unmet needs and explained almost 17% of the variance. CONCLUSIONS: These findings have extended our understanding of the unmet supportive care needs of Arab cancer survivors and confirm disparities in unmet needs in immigrant populations. IMPLICATIONS FOR PRACTICE: Greater attention is needed to ensure the supportive care needs are met for immigrant patients with cancer. Additional strategies to address physical and psychological needs are particularly needed in this group.

The "sphere of care": A qualitative study of colorectal cancer patient and caregiver experiences of support within the cancer treatment setting.

INTRODUCTION: Colorectal cancer is associated with considerable physical and psychosocial burden. Whilst social support is known to facilitate psychological adjustment to cancer, patients' and caregivers' experiences of social support within a treatment setting and their perceptions of the role of the treating team in providing this support is unknown. Specifically, there is a gap in the research that explores in detail who people affected by colorectal cancer consider to be supportive, and the function, timing and nature of this support, whilst receiving treatment. This study explored both patients' and caregivers' a) experiences of social support and how this relates to their experience of treatment; and b) what facilitates support in the treatment setting. METHODS: Individual interviews (N = 20) were conducted with patients diagnosed with colorectal cancer and caregivers of such patients. Audiotaped interviews were transcribed verbatim and analysed using the framework method. RESULTS: Three major themes emerged from the data: a) treating team as a source of support, highlighting the importance of connection with the treating team; b) changes in existing social supports, encompassing issues regarding distance in interpersonal relationships as a consequence of cancer; and c) differing dimensions of support, exploring the significance of shared experience, practical, financial, and emotional support. CONCLUSIONS: Patients and caregivers perceived the treating team as a major source of support. Support from the treating team was particularly important in the context of the changes that occur as a result of a diagnosis of colorectal cancer and the effects of subsequent treatment. Incidental support from others encountered in the treatment setting was also experienced and was equally important to both patients and caregivers. This has implications for the way health care professionals respond to both patients and caregivers in the treatment setting in terms of communication, interventions and environment.

Arab-migrant Cancer Survivors' Experiences of Using Health-care Interpreters: A Qualitative Study.

OBJECTIVE: This paper is drawn from a larger mixed-method study that sought to explore the cancer experiences of Jordanian and Australian Arab cancer survivors and their family caregivers. This paper specifically focuses on the experiences of the Australian cancer survivors and their use of interpreter services to communicate with health-care providers (HCPs). METHODS: Individual face-to-face interviews were conducted using a semi-structured interview guide. Data were manually thematically analyzed using an inductive approach. RESULTS: Three key themes were identified which highlighted the communication issues the Arab-migrant cancer survivors experienced when using health-care interpreters: (1) "My language is weak" - needing someone to help them when communicating with their HCPs; (2) "I had a problem in the dialect" - the need to understand and to be understood by the interpreters; and (3) "I felt all the time that there is something missing" - not being heard by the interpreter. Low confidence in engaging and using the English language meant many cancer survivors were reluctant to seek support from cancer services or to attend workshops conducted in the English language. Despite the presence of professionally trained health-care interpreters in health-care communications, cancer survivors were frustrated when provided with interpreters who did not speak the same dialect, causing linguistic and cultural discord. This created confusion as information was often misinterpreted, resulting in the delivery and receipt of mixed messages. CONCLUSIONS: Despite the availability of professionally trained health-care interpreters, our findings identified the need for HCPs to ascertain linguistic and cultural congruence when arranging interpreter services.

The development of an online intervention (Care Assist) to support male caregivers of women with breast cancer: a protocol for a mixed methods study.

INTRODUCTION: It is projected that 17 730 women will be diagnosed with breast cancer in Australia in 2017, with 3114 of these predicted to be fatal. Caregiving for a person with cancer can significantly impact caregivers' physical and mental health. Many caregivers feel ill-prepared for this role, especially when care involves complex medical needs accompanied by the psychological challenges experienced following a cancer diagnosis. METHODS AND ANALYSIS: This study employs a convergent, parallel, mixed methods design combining an online survey with an optional interview. Eligible, consenting participants will be invited to participate in a survey to examine (1) participants' unmet needs, (2) challenges experienced throughout the cancer journey, (3) perceived self-efficacy to determine participants' level of confidence in undertaking caregiver tasks, (4) views regarding suitable content to include in a caregiver training intervention, (5) preferred method of intervention delivery (ie, website, smartphone application and/or interactive video), and (6) preferences for the timing of delivery of the intervention content (ie, ability to choose a module, access to the entire content or have a set order in which they receive the information). Caregivers will be eligible to participate if they (1) are male, (2) have previously cared for or are currently caring for a woman with breast cancer, (3) are aged over 18 years, and (4) do not currently suffer from a cognitive impairment or mental health condition (ie, depression, anxiety). Data analysis will include examination of differences in psychological outcomes and needs based on demographic variables, and mediation analysis to explore whether self-efficacy mediates the relationship between challenges, unmet needs and distress. Qualitative data will be analysed using thematic analysis. ETHICS AND DISSEMINATION: The study was reviewed and approved by two human research ethics committees within Australia. We anticipate two to three publications may be developed from the study.

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

OBJECTIVES: 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). METHODS: Four databases were searched (inception-May 2016): MEDLINE (OvidSP), PsycINFO (OvidSP), CINAHL (EBSCO), and SCOPUS; reference lists were examined for additional publications. Grey literature was excluded. Outcome data were extracted for survival, distress, quality of life, coping, sleep, fatigue, and/or pain and summarised through narrative synthesis. RESULTS: Fifteen randomised clinical trials (RCTs), reported across 23 articles, met inclusion criteria: 7 groups, 4 individuals, and 4 low-intensity interventions. Overall, interventions improved distress (8/13 RCTs), coping (4/5 RCTs), and pain (4/5 RCTs). No evidence of survival benefit was found. For remaining outcomes, evidence was either insufficient, or too mixed to draw conclusions. Group programs had the strongest evidence-base for efficacy; individual and low-intensity therapy had insufficient evidence to form conclusions. Group interventions had longest intervention durations and lowest uptake and adherence; low-intensity interventions had shortest durations and highest uptake and adherence. Disparities in uptake, adherence, and reach were evident, with the demographic profile of participants polarised to young, Caucasian, English-speaking, partnered women. CONCLUSIONS: There remains a paucity of psychological interventions for women with metastatic breast cancer. Those that exist have an inconsistent evidence-base across the range of patient-reported outcomes. Further research is needed to evaluate accessible delivery formats that ensure efficacy as well as uptake.

eHealth System for Collecting and Utilizing Patient Reported Outcome Measures for Personalized Treatment and Care (PROMPT-Care) Among Cancer Patients: Mixed Methods Approach to Evaluate Feasibility and Acceptability.

BACKGROUND: Despite accumulating evidence indicating that collecting patient-reported outcomes (PROs) and transferring results to the treating health professional in real time has the potential to improve patient well-being and cancer outcomes, this practice is not widespread. OBJECTIVE: The aim of this study was to test the feasibility and acceptability of PROMPT-Care (Patient Reported Outcome Measures for Personalized Treatment and Care), a newly developed electronic health (eHealth) system that facilitates PRO data capture from cancer patients, data linkage and retrieval to support clinical decisions and patient self-management, and data retrieval to support ongoing evaluation and innovative research. METHODS: We developed an eHealth system in consultation with content-specific expert advisory groups and tested it with patients receiving treatment or follow-up care in two hospitals in New South Wales, Australia, over a 3-month period. Participants were recruited in clinic and completed self-report Web-based assessments either just before their upcoming clinical consultation or every 4 weeks if in follow-up care. A mixed methods approach was used to evaluate feasibility and acceptability of PROMPT-Care; data collected throughout the study informed the accuracy and completeness of data transfer procedures, and extent of missing data was determined from participants' assessments. Patients participated in cognitive interviews while completing their first assessment and completed evaluation surveys and interviews at study-end to assess system acceptability and usefulness of patient self-management resources, and oncology staff were interviewed at study-end to determine the acceptability and perceived usefulness of real-time PRO reporting. RESULTS: A total of 42 patients consented to the study; 7 patients were withdrawn before starting the intervention primarily because of changes in eligibility. Overall, 35 patients (13 on treatment and 22 in follow-up) completed 67 assessments during the study period. Mean completeness of patient-reported data was 93%, with 100% accuracy of data transfer. Ten patients completed cognitive interviews, 28 completed evaluation surveys, and 14 completed evaluation interviews at study-end. PROMPT-Care patient acceptability was high-100% (28/28) reported the time to complete the Web-based assessments (average 15 min) as about right, most willing to answer more questions (79%, 22/28 yes), 96% (27/28) found the Web-based assessment easier or same as completing a paper copy, and they valued the self-management resources . Oncology staff (n=5) also reported high acceptability and potential feasibility of the system. CONCLUSIONS: Patients and oncology staff found the PROMPT-Care system to be highly acceptable, and the results suggest that it would be feasible to implement it into an oncology setting. Suggested modifications to the patient assessment survey, clinician access to the reports, and system requirements will be made as part of the next stage of large-scale testing and future implementation of the system as part of routine care. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN1261500135294; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=369299&isReview=true (Archived by WebCite at http://www.webcitation.org/6lzylG5A0).

A systematic review and meta-analysis of written self-administered psychosocial interventions among adults with a physical illness.

OBJECTIVE: The cost of implementing professionally-led psychosocial interventions has limited their integration into routine care. To enhance the translation of effective psychosocial interventions in routine care, a self-administered format is sometimes used. The meta-analysis examined the efficacy of written self-administered, psychosocial interventions to improve outcomes among individuals with a physical illness. METHODS: Studies comparing a written self-administered intervention to a control group were identified through electronic databases searching. Pooled effect sizes were calculated across follow-up time points using random-effects models. Studies were also categorised according to three levels of guidance (self-administered, minimal contact, or guided) to examine the effect of this variable on outcomes. RESULTS: Forty manuscripts were retained for the descriptive review and 28 for the meta-analysis. Findings were significant for anxiety, depression, distress, and self-efficacy. Results were not significant for quality of life and related domains as well as coping. Purely self-administered interventions were efficacious for depression, distress, and self-efficacy; only guided interventions had an impact on anxiety. CONCLUSIONS: Findings showed that written self-administered interventions show promise across a number of outcomes. PRACTICE IMPLICATIONS: Self-administered interventions are a potentially efficacious and cost-effective approach to address some of the most common needs of patients with a physical illness.

Trajectories of mental and physical functioning among spouse caregivers of cancer survivors over the first five years following the diagnosis.

OBJECTIVE: Identify the trajectories of physical and mental functioning among spouse caregivers of patients with cancer over the first five years post-diagnosis and variables associated with low or deteriorating functioning. METHODS: Caregivers completed a survey at 6 months and 1, 2, 3.5, and 5 years post-patient diagnosis, including the SF-12 for quality of life (QOL). SF-12 Mental Component Summary (MCS, n=299) and Physical Component Summary (PCS, n=300) scores were analyzed using SAS. RESULTS: Five trajectories for PCS were identified, the top three were: (a) high PCS (53.0%); (b) steady decline in PCS (17.0%); and (c) steady increase, but remaining below population norm (16.7%). Five trajectories for MCS were also identified, the top two being: (a) high MCS (45.8%) and (b) MCS comparable to population norm (27.8%). Variables associated with low or deteriorating QOL included depression, social support, coping, burden, and/or unmet needs. CONCLUSIONS: This is the first study to document spouse caregivers' QOL over the first five years post-patient diagnosis. Although many participants experienced high functioning, almost a third reported low or deteriorating mental or physical functioning. PRACTICE IMPLICATIONS: Variables associated with low or deteriorating mental and physical functioning can be targeted in future interventions.

Development and Feasibility Testing of PROMPT-Care, an eHealth System for Collection and Use of Patient-Reported Outcome Measures for Personalized Treatment and Care: A Study Protocol.

BACKGROUND: Patient-reported outcome (PRO) measures have been used widely to screen for depression, anxiety, and symptoms in cancer patients. Computer-based applications that collect patients' responses and transfer them to the treating health professional in real time have the potential to improve patient well-being and cancer outcomes. OBJECTIVE: This study will test the feasibility and acceptability of a newly developed eHealth system which facilitates PRO data capture from cancer patients, data linkage and retrieval to support clinical decisions and patient self-management, and data retrieval to support ongoing evaluation and innovative research. METHODS: The eHealth system is being developed in consultation with 3 overarching content-specific expert advisory groups convened for this project: the clinical advisory group, technical advisory group, and evaluation advisory group. The following work has already been completed during this phase of the study: the Patient-Reported Outcome Measures for Personalized Treatment and Care (PROMPT-Care) eHealth system was developed, patient-reported outcomes were selected (distress, symptoms, unmet needs), algorithms to inform intervention thresholds for clinical and self-management were determined, clinician PRO feedback summary and longitudinal reports were designed, and patient self-management resources were collated. PROsaiq, a custom information technology system, will transfer PRO data in real time into the hospital-based oncology information system to support clinical decision making. The PROMPT-Care system feasibility and acceptability will be assessed through patients completing PROMPT-Care assessments, participating in face-to-face cognitive interviews, and completing evaluation surveys and telephone interviews and oncology staff participating in telephone interviews. RESULTS: Over the course of 3 months, the system will be pilot-tested with up to 50 patients receiving treatment or follow-up care and 6 oncology staff at 2 hospitals in New South Wales, Australia. Data will be collected to determine the accuracy and completeness of data transfer procedures, extent of missing data from participants' assessments, acceptability of the eHealth system and usefulness of the self-management resources (via patient evaluation surveys and interviews), and acceptability and perceived usefulness of real-time PRO reporting (via oncology staff interviews) at the completion of the pilot phase. CONCLUSIONS: This research investigates implementation of evidence into real world clinical practice through development of an efficient and user-friendly eHealth system. This study of feasibility and acceptability of the newly developed eHealth system will inform the next stage of larger scale testing and future implementation of the system as part of routine care. CLINICALTRIAL: Australian New Zealand Clinical Trials Registry ACTRN1261500135294; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=369299&isReview=true (Archived by WebCite at http://www.webcitation.org/6lzylG5A0).

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 pilot, multisite, randomized controlled trial of a self-directed coping skills training intervention for couples facing prostate cancer: accrual, retention, and data collection issues.

PURPOSE: To examine the acceptability of the methods used to evaluate Coping-Together, one of the first self-directed coping skill intervention for couples facing cancer, and to collect preliminary efficacy data. METHODS: Forty-two couples, randomized to a minimal ethical care (MEC) condition or to Coping-Together, completed a survey at baseline and 2 months after, a cost diary, and a process evaluation phone interview. RESULTS: One hundred seventy patients were referred to the study. However, 57 couples did not meet all eligibility criteria, and 51 refused study participation. On average, two to three couples were randomized per month, and on average it took 26 days to enrol a couple in the study. Two couples withdrew from MEC, none from Coping-Together. Only 44 % of the cost diaries were completed, and 55 % of patients and 60 % of partners found the surveys too long, and this despite the follow-up survey being five pages shorter than the baseline one. Trends in favor of Coping-Together were noted for both patients and their partners. CONCLUSIONS: This study identified the challenges of conducting dyadic research, and a number of suggestions were put forward for future studies, including to question whether distress screening was necessary and what kind of control group might be more appropriate in future studies.

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.

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

OBJECTIVE: 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. METHODS: A literature search was undertaken to identify descriptive studies published between 1990 and 2013 (English and French) that examined the interdependence of patients' and partners' coping, and the impact of coping on psychosocial outcomes. Data were extracted using a standardised form and reviewed by three of the authors. RESULTS: Twenty-three peer-reviewed manuscripts were identified, from which seven theoretical perspectives were derived: Relationship-Focused Coping, Transactional Model of Stress and Coping, Systemic-Transactional Model (STM) of dyadic coping, Collaborative Coping, Relationship Intimacy model, Communication models, and Coping Congruence. Although these theoretical perspectives emphasised different aspects of coping, a number of conceptual commonalities were noted. CONCLUSION: This review identified key theoretical frameworks of dyadic coping used in cancer. Evidence indicates that responses within the couple that inhibit open communication between partner and patient are likely to have an adverse impact on psychosocial outcomes. Models that incorporate the interdependence of emotional responses and coping behaviours within couples have an emerging evidence base in psycho-oncology and may have greatest validity and clinical utility in this setting.

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.

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.