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.

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.

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.

Wearing my heart on my chest: dating, new relationships, and the reconfiguration of self-esteem after breast cancer.

OBJECTIVE: This study investigated women's experiences of establishing an intimate relationship with a new partner after breast cancer diagnosis and treatment. METHODS: Fifteen breast cancer survivors, who were either actively dating or in a new intimate relationship that began post-diagnosis, participated in semi-structured interviews. Interview transcripts were analyzed using the grounded theory method. RESULTS: The analysis yielded Wearing My Heart on My Chest as the core category with three underlying categories: (1) Losing and Regaining Self and Bodily Esteem; (2) Taking the Leap: Dating and the Obligation to Disclose; and (3) Reclaiming of Self through the New Relationship. The categories refer to the experience of profound vulnerability invoked by the history of breast cancer and the act of verbally and physically revealing this past to a new intimate partner. Disclosure entailed a series of successive 'tests' of the new partner for his ability to accept the physical and psychological ramifications of breast cancer, with the resulting relationship becoming a vehicle through which women regained self-esteem. CONCLUSIONS: The process of dating and starting a new intimate relationship had the potential to restore women's self and bodily esteem previously diminished by breast cancer. The reconfiguration of self-esteem following breast cancer is thus experienced as an ongoing process that begins with diagnosis and continues well into the new relationship.

Toward clinical care guidelines for supporting rehabilitative vaginal dilator use with women recovering from cervical cancer.

PURPOSE: Building upon the findings of a recent qualitative investigation of women's experiences with rehabilitative vaginal dilator use, the primary goal of this article is to outline a set of preliminary clinical care recommendations that health care professionals may draw upon in addressing women's unique experiences with vaginal dilator use including their multifaceted struggles with the procedure, possibly enhancing adherence to this practice. METHODS: Ten women participated in in-depth interviews regarding their experiences with using the dilator as prescribed by their health care providers. Following the analysis of these interviews, members of the interdisciplinary research team met to review and discuss the development of clinical care recommendations stemming from these findings. RESULTS: Eight care recommendations aimed at addressing the concerns expressed by the women interviewed and at improving women's overall experiences with rehabilitative dilator use emerged: (1) introduce the dilator in a light and straightforward manner; (2) enhance dilator accessibility; (3) introduce the vaginal dilator early on in treatment; (4) emphasize health maintenance over intercourse as a benefit of dilator use; (5) explore and acknowledge women's values and views of sexuality; (6) increase awareness and sensitivity to emotional reactions; (7) enhance psychoeducational resources for supporting vaginal dilator use; and (8) ensure consistent institutional practice when introducing the dilator. CONCLUSION: The clinical care recommendations proposed here reflect the various challenges women may encounter when using the vaginal dilator--which vary from practical to, for some, profoundly emotional--and are designed to better position health care providers to help women navigate these challenges.

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.

From "sex toy" to intrusive imposition: a qualitative examination of women's experiences with vaginal dilator use following treatment for gynecological cancer.

INTRODUCTION: Regular use of vaginal dilators has been recommended as a prophylactic measure following radiation treatment for gynecological cancers in order to minimize vaginal stenosis and promote optimal healing of the vagina. Despite the well-established reluctance of women to adopt this practice, little is known about the difficulties and concerns associated with vaginal dilator use. AIM: To investigate women's experiences with the vaginal dilator and to understand the psychosocial factors that influence women's adoption of rehabilitative dilator use. METHODS: This is an exploratory qualitative study using semi-structured interviews with a sample of 10 women with a history of gynecological cancer and who were prescribed a vaginal dilator. Interviews were analyzed using the grounded theory method and examined for recurrent themes. MAIN OUTCOME MEASURE: The main outcome measure was a semi-structured interview comprised of open-ended questions designed to elicit information concerning topic areas relevant to gynecological cancer, vaginal dilator use, and sexuality. RESULTS: The analysis resulted in five main categories underlying the core category of "From 'sex toy' to intrusive imposition." These were: (i) embarrassing sex toy; (ii) reliving the invasion of treatment; (iii) aversive "hands-on" experience; (iv) not at the forefront of my recovery; and (v) minimizing the resistance. CONCLUSIONS: Rehabilitative vaginal dilator use is a complex, multifaceted, and personal phenomenon that carries deep psychological and emotional implications that make it intrusive. These findings may enhance the way in which vaginal dilators are introduced and help healthcare providers address better women's difficulties and concerns with the dilators. Ultimately, it may also lead to improved health maintenance and quality of life for women recovering from gynecological cancer.

Travelling on parallel tracks: patient and physician perspectives on why women delay seeking care for breast cancer symptoms.

In the breast cancer literature, "delayed presentation" is defined as a delay of > 3 months from the self-detection of a new breast cancer symptom until presentation to a health care provider. It has been established that early detection of breast cancer is associated with better health outcomes. The purpose of this qualitative study was to explore reasons why women delay seeking care for their breast cancer symptoms by asking both women and family physicians for their perspectives. Narrative analysis was used to reveal the ways in which people make sense of their experiences and which parts of their stories are most important to them. We found differences in the explanatory narratives of women versus those of family physicians when it came to understanding delay. Suggestions to promote earlier presentation include improving physician-patient communication and encouraging physician and health care professional neutrality in making attributions about women's delay.

'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.

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.

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.

Why women delay seeking assistance for locally advanced breast cancer.

Locally advanced breast cancer (LABC) occurs in 10% to 30% of all new primary breast cancer diagnoses. For reasons that are not well-understood, 20% to 30% of women with breast cancer (at all stages) wait eight weeks or more from the time they notice the breast symptom(s) to when they seek assistance from a health care provider. Comprehending the mechanisms that support the health appraisal and health seeking behaviour is paramount and not well understood, particularly for women with LABC. The purpose of this study was to qualitatively explore the cognitive, emotional, and contextual experience of women with locally advanced breast cancer in the time between symptom discovery and seeking health care. In-depth qualitative interviews and a cross-case, content analysis revealed that the participants delayed their search for assistance because they did not perceive themselves to be at risk for developing breast cancer, had a symptom other than a lump, and so misattributed or minimized the gravity of the symptom, had a previous experience with a benign tumour, and/or were experiencing concurrent stressful life events. These participants were motivated to seek attention if they had an already scheduled appointment with a health professional for another matter, felt the symptom worsen over time, or were motivated by a loved one to seek help. Implications for health promotion and for education with women with benign breast disease, as well as the general public, 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.

Relationship vulnerabilities during breast cancer: patient and partner perspectives.

OBJECTIVE: Close interpersonal relationships play a crucial role in a woman's adjustment to breast cancer. To date, the literature has focused primarily on characteristics or behaviors of the well spouse that influence a woman's adaptation to the illness. The present qualitative investigation extended this literature by adopting an interactional perspective based on the underlying assumption that relationship partners' coping and distress is mutually influential. The focus of the analysis was patient and partner perceptions of relationship strife or tension over the course of the illness based on the notion that such interactions may be as or more harmful to relationships than supportive exchanges are helpful. METHOD: Nineteen women (at different stages of the illness) and eleven male spouses were interviewed about their experiences in relation to breast cancer. Nine of the men and nine of the women were relationship partners. Interview text was subjected to a thematic analysis and informed by grounded theory principles. RESULTS: Two higher-order categories of Personal Characteristics (both patient and partner) and Relationship Dynamics that impeded couple adjustment defined the overall theme of Relationship Vulnerabilities. CONCLUSIONS: Findings from this study are situated within a broader developmental framework wherein breast cancer is considered a catastrophic life event that challenges the assimilation and accommodation processes of both partners in the relationship. For couples that are able to overcome the relationship challenges associated with the illness, there is the potential for mutual growth, and a deepening and strengthening of the relationship. Implications for clinical practice are discussed.

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.

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.

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.

'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.