Examining engagement in a self-in-relationship observation exercise by couples coping with breast cancer: A qualitative analysis of text-based feedback.

Young women with breast cancer (BC) and their partners generally face greater psychosocial difficulties relative to older couples, justifying the need for targeted support for this group. Toward this end, we examined how couples facing BC responded to participating in a self-in-relationship observation exercise intended to improve the relationship. Participants (N = 60) were 30 women and 30 male partners who, over the course of a week, observed and textually described/reported their "turning-towards-and-away-behaviors" deemed to contribute to relationship closeness/distance. Text-based feedback on the exercise was thematically analyzed. Findings suggest an online exercise promoting in vivo awareness of relationship interactions was feasible and acceptable to the majority of couples. Language accounts reflected acting with and through the shared "turning-towards-and-away-framework" with the intention of increasing closeness with one's partner. We discuss differences in exercise engagement and how participants reported changes in their attending, understanding, and acting in relationship, primarily for the better.

Treatment Satisfaction With Couplelinks Online Intervention to Promote Dyadic Coping in Young Couples Affected by Breast Cancer.

Background: This study evaluated participant satisfaction with "Couplelinks," an online psychological intervention designed for younger couples coping with breast cancer. The program included six experiential learning exercises (plus one optional module), psychoeducational information, and support from a personal mental health professional. Objective: The primary objectives were to examine participants' perceptions of: the online intervention's structure and content; the value of including a professional facilitator; and benefits and drawbacks of the program. Methods: A treatment satisfaction questionnaire comprised of Likert indices and open-ended questions pertaining to treatment satisfaction was completed by 26 patients and 27 male partners (N = 53) approximately 1-2 weeks following the intervention which occurred in the context of a randomized controlled trial. Descriptive statistics were used to summarize satisfaction ratings and generalized linear models with fixed effect for gender were used to test for differences in male-female outcomes. A thematic analysis was undertaken in order to understand, organize and summarize the qualitative textual feedback. Results: Participants reported an overall satisfaction rating of 4.3 out of 5 (SD = 0.54) with patient satisfaction ratings being higher than that of male partners' (p = 0.01). The majority of participants considered the facilitator's role to be necessary 4.6 (SD = 0.60), and found the program to be convenient 4.1 (SD = 0.81) despite some participants struggling to keep up with the modules. Subjective data revealed participants valued the convenience and flexibility of the online intervention and appreciated the program's involvement of both partners. Participants also reported that including a professional facilitator humanized the intervention, served as motivation to progress through the program, facilitated insight into their relationship, and was reassuring. Experiential gains noted by participants included that the program: helped couples to open channels of communication; prompted them to designate quality time for one another; evoked feelings of unity and togetherness; and inspired new insight in the relationship. Conclusion: Such feedback supports the feasibility and acceptability of the Couplelinks program while offering directions for improvement of online couple-based interventions in cancer.

'Weighing' Losses and Gains: Evaluation of the Healthy Lifestyle Modification After Breast Cancer Pilot Program.

Objectives: This pilot study sought to develop and evaluate a novel online group-based intervention (Healthy Lifestyle Modification after Breast Cancer; HLM-ABC) to help breast cancer survivors (BCSs) make healthy lifestyle changes intended to yield not only beneficial physical outcomes (i.e., weight loss, reduced body mass index) but also greater behavioral (e.g., increased physical activity, healthier eating), and psychosocial well-being (e.g., self-efficacy, motivation, body image). Methods: An exploratory single-arm, mixed-method triangulation design was employed to evaluate the feasibility and preliminary effectiveness of the HLM-ABC intervention for overweight BCSs. Fourteen women participated in the 10-week intervention and completed quantitative measures of the above-mentioned outcomes at baseline, post-treatment, 6-month, and 12-month follow-up time points. Qualitative data were obtained post-treatment via semi-structured interviews and a treatment satisfaction questionnaire. Results: Participants lost an average of 2.83% of their baseline weight (M = 196.65; SD = 38.59) by 1-year follow-up (M = 191.29; SD = 33.91), equal to a small effect size (d = -0.37). Despite achieving only modest weight loss, participants achieved meaningful gains in the form of increased physical activity (d = 0.2), discovery of gratifying movement, more intuitive eating habits (d = 1.12), greater bodily and emotional awareness, and positive shifts in beliefs about being able to make healthy choices regarding food (d = 0.63) and physical activity (d = 0.38). Furthermore, they demonstrated a slight improvement in body image (d = 0.36) and described feeling more self-compassionate, empowered, and acknowledging of variables beyond control (i.e., hormonal therapy, unsatisfactory surgery) that can present barriers to change. Conclusion: After completing a 10-week online program, participants achieved meaningful and lasting changes on a number of healthful indicators, even when this did not correspond with a significant reduction in weight. Findings highlight the complex, multifaceted nature of "health" and lend support for promotion of healthier lifestyle following cancer treatment that encompasses not only physical weight, but also behavior, psychosocial well-being, and (often unmodifiable) circumstances such as life-preserving hormonal treatments.

Couplelinks online intervention for young couples facing breast cancer: A randomised controlled trial.

OBJECTIVE: Young women with breast cancer and their partners are more distressed than couples who are affected later in life. While dyadic interventions in the context of cancer are promising, there are access barriers, particularly for younger couples. This study evaluated Couplelinks, a professionally facilitated, web-based program designed to help couples improve their conjoint coping. METHOD: This randomised controlled trial employed a waitlist control evaluation of the program. Outcomes included dyadic coping, relationship adjustment, depression, and anxiety. RESULTS: Seventy-five couples consented to participate and were randomised. The final analysis included 31 couples in the treatment group and 36 couples in the waitlist group. Modest improvements were found in positive dyadic coping but effects were not maintained at 3-month follow-up. No effect was seen on overall relationship adjustment. CONCLUSIONS: Our findings inform the rapidly expanding field of online programming for couples in general, and those affected by BC in particular. Intervention timing, 'dose', low overall relational distress, and the mainly enrichment rather than problem-focus of Couplelinks may help explain the lack of change on relationship adjustment.

Reproductive concerns and fear of cancer recurrence: a qualitative study of women's experiences of the perinatal period after cancer.

BACKGROUND: Young female cancer survivors are at a disproportionate risk of suffering significant psychological distress following treatment, particularly fears of cancer recurrence (FCR). While previous research has established the robust relationship between FCR and family matters (e.g., family planning and motherhood), there is a paucity of information about how a history of cancer affects women's psychological functioning throughout the perinatal period. The present investigation sought to better understand women's experiences of pregnancy and the postpartum period following cancer treatment through a qualitative analysis. METHODS: Ten women participated in a semi-structured, one-on-one interview either over telephone or video conferencing (Zoom). Women were recruited from Sunnybrook Health Sciences Centre in Toronto, as well as through online cancer support platforms, and social media sites. Participants all had a past cancer diagnosis; no active disease; were 45-years of age or younger; currently in the perinatal period; and spoke English fluently. The study employed a grounded theory analysis by which verbatim interview data were analysed using a constant comparison method until data saturation was reached. RESULTS: The qualitative analysis yielded I'm So Happy, But Also Terrified, as the core category, indicative of the duality of emotional experience that characterized the perinatal period for these women. Additionally, four higher-order categories emerged revealing how women go through a process of grief related to potential fertility loss; conditional joy during and after pregnancy due to the lingering weight of cancer; frustration with a lack of resources regarding perinatal health after cancer; and hope as they enter into motherhood. CONCLUSION: These results suggest that women in the perinatal period with a history of cancer may be at an increased risk for psychological distress and require additional fertility and reproductive resources both during and after cancer treatment. This research is an important step in further understanding women's experiences of pregnancy after cancer and may help to inform future research and healthcare practices, in addition to improving perinatal care after cancer.

Acceptability of an online relational intimacy and sexual enhancement (iRISE) intervention after breast cancer.

The purpose of this study was to develop and evaluate an online relational intimacy and sexual enhancement (iRISE) intervention for couples experiencing sexual difficulties following breast cancer (BC). The acceptability of iRISE was evaluated using a single-arm, qualitative design, with 14 couples completing satisfaction surveys and posttreatment interviews. The intervention was found to be acceptable, as demonstrated by high satisfaction ratings and qualitative feedback regarding iRISE and its online delivery. Couples spoke about the helpfulness of iRISE and how the intervention improved their sexual relationship. The use of video conferencing (eTherapy) was widely accepted by participants, who highlighted several advantages of this modality. Overall, the results support the acceptability of this online psychosexual intervention for couples affected by BC. The empirical and theoretical basis for the design of iRISE along with findings from a qualitative analysis of couples' experiences of the intervention's helpfulness to them is discussed.

Storying My Lifestyle Change: How Breast Cancer Survivors Experience and Reflect on Their Participation in a Pilot Healthy Lifestyle Intervention.

Purpose: Healthy lifestyle interventions after breast cancer treatment have generally been studied in terms of weight-loss outcomes, which leaves a gap in our understanding of the phenomenological experience of such programs. Our knowledge of how or why women recovering from breast cancer engage or do not engage in these programs is limited. Thus, we aimed to share subjective experiences of lifestyle change within a 12-week group intervention entitled "Healthy Lifestyle Modification After Breast Cancer" (HLM-ABC). Methods: The present research entailed a multiple case study of four breast cancer survivors who participated in the HLM-ABC. Participants were interviewed longitudinally at four time-points: (1) pre-intervention; (2) mid-way intervention; (3) post-intervention, and (4) three-months post-intervention. Results: We analysed storytelling of participation in the HLM-ABC program to investigate participants' unique and gradual endeavours towards living a healthier lifestyle. A qualitative, narrative analysis was applied to each participant's set of interviews, which yielded two distinct story-telling patterns while participating in the HLM-ABC program: one "plot-driven" and one "character-driven". Conclusions: These two narrative styles appeared to correspond with differing levels of intervention uptake and perceived success in the program. The implications of these narrative styles and their relationship to healthy lifestyle intervention are discussed.

Online couple interventions in cancer.

PURPOSE OF REVIEW: Cancer diagnosis and treatment can have long-lasting psychological and physical consequences that affect both patients and their intimate partners. Improved understanding of extant dyadic interventions in the context of cancer, and how access to these may be enhanced through web-based technologies, introduce new directions for how cancer-related psychological distress for couples may be ameliorated. RECENT FINDINGS: Couples are negatively impacted by cancer, both individually, and as a dyad. Bolstering techniques to support effective communication about common cancer-related concerns and support for adjusting to new roles and responsibilities may help to strengthen the couple's relationship so partners are better able to cope with cancer. Although there are various intervention options available for couples dealing with cancer, many pose barriers to participation because of constraints on time and/or distance. However, online interventions have been shown to be effective, both in easing psychological distress and reducing participant burden. SUMMARY: Couples dealing with cancer experience psychological distress and must learn to navigate changing roles and responsibilities in the face of the disease. Online interventions offer flexible and innovative platforms and programs that help to address couples' educational needs while strengthening dyadic coping.

Lifestyle change experiences among breast cancer survivors participating in a pilot intervention: A narrative thematic analysis.

PURPOSE: Healthy lifestyle adoption among breast cancer (BC) survivors remains a poorly understood process. This study aimed to qualitatively examine the unique change trajectories of BC survivors who partook in a pilot version of the Healthy Lifestyle Modification After Breast Cancer (HLM-ABC) intervention. METHODS: A sample of four BC survivors were studied intensively through longitudinal interviews conducted at four time points with each participant: (1) pre-treatment, (2) mid-way treatment, (3) post-treatment, and (4) three-months following their participation in the HLM-ABC. A multiple-case study, narrative analysis was applied to 15 interviews, resulting in individual narratives as well as shared 'thematic intersections' elucidating cross-participant experiences. RESULTS: The findings showed that participants offered unique styles of authorship, characterized by diverse struggles, victories, and motivational insights, organized around the following intersecting themes: (1)Weight management prescription as a motivator or deterrent, (2) 'Time for me' is time away from my family, and (3) Patterns of opposition to lifestyle change. These women's rich, storied accounts suggest experiences of personal growth and imply that existential concerns can be both motivating and deterring in relation to health behavior change. CONCLUSION: This research provides a comprehensive and nuanced grasp of healthy lifestyle modification in the survivorship stage of BC.

Weight-based bullying and compromised peer relationships in young adult bariatric patients.

The experience of weight-based bullying in young adult bariatric patients has not yet been examined. Thirteen young adults (age, 18-24) that were seeking or had undergone bariatric surgery participated in semi-structured in-depth interviews. A thematic analysis informed by grounded theory principles was conducted. Analysis revealed the following three major themes: (1) being the biggest kid, (2) coping through avoidance, and (3) compromised peer and intimate relationships. Victims of weight-based bullying often avoid and withdraw socially in response to persistent verbal abuse. The decision to pursue bariatric surgery at a relatively young age adds another dimension of difficulty when navigating peer relationships.

The closer 'We' are, the stronger 'I' am: the impact of couple identity on cancer coping self-efficacy.

The present study tested the supposition that greater levels of couple identity (or we-ness) increase a woman's coping self-efficacy in relation to breast cancer, which, in turn, predicts better psychosocial adjustment. Women (N = 112) in committed relationships completed surveys assessing their levels of couple identity, cancer coping self-efficacy, and aspects of their psychosocial adjustment (specifically, depression, anxiety and functional well-being) during one of their outpatient visits to the cancer centre. As predicted, the more women identified with their relationships, the lower their levels of depression and anxiety were and the greater their functional well-being was. This relationship was mediated by coping self-efficacy: greater identification with one's relationship predicted greater confidence in one's ability to cope, which, in turn, predicted better adjustment. The role intimate relationships play in women's adjustment to breast cancer, as well as directions for further research, are discussed.

Professional Online Support Group Facilitators: Guarantors of Maximal Group Utility.

Synchronous online support groups (OSGs) represent a promising psychosocial resource, as they offer many of the same therapeutic factors as face-to-face groups as well as unique benefits (e.g., anonymity, convenience). Despite their advantages, OSGs also present challenges to participation, including lack of visual cues, disjointed text communication, and rapid pace, which render the presence of a professional facilitator especially important. This study involved an in-depth qualitative analysis of 38 sessions of four time-limited OSGs for informal caregivers (i.e., family) of patients with advanced-stage cancer. Results depict the ways in which four trained facilitators maximized the utility of their respective online groups-namely, by structuring and guiding, actively scanning, and modulating experiencing. These findings expand our limited understanding of the facilitative processes that take place in OSGs and may be clinically informative to professionals with an interest in this relatively novel group modality.

A Model of Engagement Promotion in a Professionally Facilitated Online Intervention for Couples Affected by Breast Cancer.

Professionally facilitated web-based interventions for couples affected by an illness such as cancer are growing in popularity. Attrition rates for such online programs, however, are substantially higher than what is observed in face-to-face therapeutic contexts, and lower levels of participant engagement are associated with poorer outcomes. In the present investigation, a task analysis was employed to develop a model of engagement promotion in an online intervention for couples affected by breast cancer called "Couplelinks." Results indicated that facilitators utilized a variety of meta-processes, such as humanizing the technology, and associated "eBehaviors," to maintain three relationships involved in promoting online engagement: (a) between the facilitator and couple; (b) between the intervention and couple; and (c) between the partners within the couple.

Sexual identity after breast cancer: sexuality, body image, and relationship repercussions.

PURPOSE OF REVIEW: Breast cancer treatment indelibly alters a woman's reproductive and sexual functioning, body integrity, and the ways in which she self-identifies as a sexual being. Improved understanding of how treatment affects these aspects of a woman's health, identity, and relationships is necessary to ameliorate the effectiveness with which these issues are addressed by healthcare providers. RECENT FINDINGS: Women with breast cancer experience significantly greater rates of sexual dysfunction and poorer body image than do healthy women. Despite this reality, most breast cancer patients are dissatisfied with the amount and quality of care they receive from their healthcare providers around sexuality. Although a substantial proportion of women endorse difficulties with sexual functioning, reproduction, and body image, each woman's experience is individual and contextual, influenced by a range of factors (e.g., age, illness stage, treatment type(s), relationship status, and others). SUMMARY: A high proportion of women experience difficulties with sexual health and self-concept secondary to breast cancer, yet an overwhelming number report receiving inadequate or nonexistent care in these domains from their healthcare providers. There remains too wide a gap between the needs of this population and the healthcare system's response to such needs. To bridge this gap, oncology professionals across a range of disciplines must be better trained to identify, assess, and treat such difficulties, preferably using a multimodal approach that includes biological, as well as psychological and social, strategies.

'I-We' boundary fluctuations in couple adjustment to rectal cancer and life with a permanent colostomy.

This study investigates couples' adjustment to rectal cancer and a colostomy using the 'Classification System of Couple Adjustment to Cancer', a framework delineating fluctuations in couples' sense of 'I' and 'We' in response to cancer. Nine couples affected by rectal cancer and adjusting to life with a colostomy were interviewed. A theoretical thematic analysis of the transcripts was conducted; nearly all 'I-We' shifts of the Classification System of Couple Adjustment to Cancer were observed - often in unique ways in response to rectal cancer-specific challenges - and one new shift was described. The results provide a novel and experientially grounded means of conceptualizing complex dyadic coping processes.

The Continuous Confrontation of Caregiving as Described in Real-Time Online Group Chat.

To date, our understanding of the caregiver experience has been informed primarily by guided inquiry in the form of interviews and surveys, yielding information that is limited by the scope of researchers questions. The intent of this study was to explore the experience of caring for a loved one with advanced-stage cancer by means of participant-determined communication, using interactive, text-based transcripts from synchronous online support groups. Grounded theory analysis of the group transcripts yielded the core category continuous confrontation, characterized by major challenges (unrelenting assault, a new us, and the costs of caregiving) and minor triumphs (refuelling and living more intentionally). This unique method of data collection allowed for an especially candid, intersubjective group account of what it is to be a caregiver for an ill loved one without compromising the details that caregivers themselves consider important.

Psychosocial issues experienced by young women with breast cancer: the minority group with the majority of need.

PURPOSE OF REVIEW: The ways in which biological, social, and psychological factors characteristically unfold and interact for young women with breast cancer yields complex and acute challenges that are not clearly understood by all healthcare professionals. Better knowledge of the unique needs of young women with breast cancer would assist in matching younger women with the right services at the right time. RECENT FINDINGS: Younger women (<50 years) represent a minority of breast cancer cases, yet they tend to be overrepresented with respect to demonstrating the poorest psychosocial adjustment during and following treatment. Concerns most frequently reported in this age group pertained to body image, sexual functioning, fertility, relationships, fear of cancer recurrence, and caring for children; failure of healthcare providers to initiate conversations to educate women about treatment side effects early on and/or safely discuss sensitive issues; lack of widespread availability of professional psychosocial programs that are tailored to the unique needs of this age group. SUMMARY: Young women with breast cancer are at greater risk for psychosocial adjustment problems, yet their needs are often overlooked. Proactive discussions by healthcare providers early on in treatment, and referrals to relevant services as part of standard care are needed to mitigate younger women's concerns and reduce the likelihood of problems becoming longstanding.

Couplelinks - an online intervention for young women with breast cancer and their male partners: study protocol for a randomized controlled trial.

BACKGROUND: Young breast cancer survivors (aged 50 years and under) and their partners are at an elevated risk for relationship distress and poor psychological adjustment relative to older age couples. Limited availability of time and resources and the distance to travel are major barriers to engaging in evidence-based psychosocial support programs. This paper describes the study protocol of a novel, manualized online intervention called Couplelinks that was developed to improve relationship adjustment and psychological wellbeing of young couples affected by breast cancer. Couplelinks is a custom-designed website offering a professionally facilitated, couple-centered intervention that entails informational, experiential, and interactive components. METHODS/DESIGN: A total of 80 heterosexual couples from across Canada in which the female partner has been diagnosed with a primary breast cancer will be recruited and randomized to a treatment or waitlist control group. Six dyadic learning modules form the core of the program and will be undertaken on a weekly basis. The manualized online intervention involves psycho-education and experiential exercises to enhance communication, coping ability, mutual empathy, and perspective-taking in relation to cancer. An online facilitator who is a trained mental health professional will guide and support couples throughout the process. Data collection will occur at baseline, at post-treatment or eight weeks into the waiting period, and at the three-month follow-up assessment. Primary outcome measures include the Revised Dyadic Adjustment Survey (RDAS) and Dyadic Coping Inventory (DCI) scores, and secondary outcome measures include the Hospital Anxiety and Depression Survey (HADS) score. DISCUSSION: Couplelinks is one of the first internet-based psychological interventions to improve the psychosocial adjustment of couples coping with a life-threatening illness such as cancer. If successful, the design of this program as described in this paper makes a valuable contribution to the literature on the delivery of couple-focused psychosocial interventions, both within and outside of oncology. TRIAL REGISTRATION: This trial was registered with ClinicalTrials.gov (identifier: NCT01089764 ) on 17 March 2010.

Defining the Role of the Online Therapeutic Facilitator: Principles and Guidelines Developed for Couplelinks, an Online Support Program for Couples Affected by Breast Cancer.

Development of psychological interventions delivered via the Internet is a rapidly growing field with the potential to make vital services more accessible. However, there is a corresponding need for careful examination of factors that contribute to effectiveness of Internet-delivered interventions, especially given the observed high dropout rates relative to traditional in-person (IP) interventions. Research has found that the involvement of an online therapist in a Web-based intervention reduces treatment dropout. However, the role of such online therapists is seldom well articulated and varies considerably across programs making it difficult to discern processes that are important for online therapist involvement.In this paper, we introduce the concept of "therapeutic facilitation" to describe the role of the online therapist that was developed and further refined in the context of a Web-based, asynchronous psychosocial intervention for couples affected by breast cancer called Couplelinks. Couplelinks is structured into 6 dyadic learning modules designed to be completed on a weekly basis in consultation with a facilitator through regular, asynchronous, online text-based communication.Principles of therapeutic facilitation derived from a combination of theory underlying the intervention and pilot-testing of the first iteration of the program are described. Case examples to illustrate these principles as well as commonly encountered challenges to online facilitation are presented. Guidelines and principles for therapeutic facilitation hold relevance for professionally delivered online programs more broadly, beyond interventions for couples and cancer.

Talking with text: communication in therapist-led, live chat cancer support groups.

CancerChatCanada is a pan-Canadian initiative with a mandate to make professionally led cancer support groups available to more people in Canada. Although online support groups are becoming increasingly popular, little is known about therapist-led, synchronous groups using live chat. The purpose of this study was to generate a rich descriptive account of communication experiences in CancerChatCanada groups and to gain an understanding of processes associated with previously-reported benefits. We used interpretive description to analyze interview segments from 102 patients, survivors and family caregivers who participated in CancerChatCanada groups between 2007 and 2011. The analysis yielded four inter-related process themes (Reaching Out From Home, Feeling Safe, Emotional Release, and Talking With Text) and one outcome theme (Resonance and Kinship). The findings extend previous research about text-only online support groups and provide novel insights into features of facilitated, live chat communication that are valued by group members.