Lifestyle changes after cancer treatment in patients and their partners: a qualitative study.

PURPOSE: Oncologists nowadays promote healthy lifestyle choices more often, focusing on diet, physical activity, smoking, alcohol consumption, and sleep, but the question is whether this is enough to establish actual change. As patients will have to achieve a healthy lifestyle at home in daily life, it is important to understand barriers and facilitators for lifestyle change for both patients and their partners. METHODS: A qualitative interview study was done among patients who received chemotherapy for testicular (n = 10) or breast cancer (n = 7) and their partners (n = 17). The interview focused on how much they remembered the lifestyle advice given in hospital, whether and what they had adapted since diagnosis, and what they deemed as facilitators and barriers in maintaining lifestyle change. RESULTS: Results showed that many patients and partners recalled that some advice was given in hospital but experienced this as too general and only at the start of treatment. Social contacts and the entire cancer experience helped facilitate change but were also seen as barriers. Other barriers were not considering healthy behaviors a priority or experiencing unhealthy choices as something nice after a trying time. CONCLUSIONS: Oncologists and hospitals that provide lifestyle advice should provide cancer- and person-specific lifestyle advice, should offer this advice repeatedly into survivorship, and include the partner, as they are dedicated to improving lifestyle as well. IMPLICATION FOR CANCER SURVIVORS: Staying healthy after cancer is important to both patients and their partners, and both experience their own facilitators and barriers to achieving this. Seeing a healthy lifestyle as a joint goal might facilitate change.

Differences in Psychological Health and Weight Loss after Bariatric Metabolic Surgery between Patients with and without Pain Syndromes.

PURPOSE: Chronic pain and obesity often co-occur, negatively affecting one another and psychological wellbeing. Pain and psychological wellbeing improve after bariatric metabolic surgery (BMS), however, it is unknown whether psychological wellbeing improves differently after weight loss between patients with and without chronic pain. We investigated whether weight loss is associated with greater psychological wellbeing and functioning change after BMS, comparing patients with and without preoperative pain syndromes. METHODS: Depression, health-related quality of life, self-esteem, self-efficacy to exercise and controlling eating behaviours, physical activity, and food cravings were measured before and 24 months after BMS among 276 patients with obesity. The presence of preoperative chronic pain syndromes was examined as a moderator for the relationship between 24-month weight loss and changes in psychological outcomes. RESULTS: Chronic pain syndromes were present among 46% of patients. Weight loss was associated with greater improvement in health-related quality of life, self-efficacy to exercise and controlling eating behaviours, self-esteem and greater amelioration in food cravings. Pain syndromes only moderated negatively the relationship between the postoperative weight loss and change in self-efficacy to control eating behaviours (b = -0.49, CI [-0.88,-0.12]). CONCLUSION: Patients with and without chronic pain showed similar improvements in weight and psychological wellbeing and behaviours after BMS. The relationship between weight loss and the improvement of self-efficacy to control eating behaviours was weaker among patients with chronic pain syndrome. Further work, measuring pain severity over time, is needed to shed light on the mechanism underlying pain and postoperative change in psychological wellbeing and weight loss.

Cohort profile: The ENTWINE iCohort study, a multinational longitudinal web-based study of informal care.

Informal care is a key pillar of long-term care provision across Europe and will likely play an even greater role in the future. Thus, research that enhances our understanding of caregiving experiences becomes increasingly relevant. The ENTWINE iCohort Study examines the personal, psychological, social, economic, and geographic factors that shape caregiving experiences. Here, we present the baseline cohort of the study and describe its design, recruitment methods, data collection procedures, measures, and early baseline findings. The study was conducted in nine countries: Germany, Greece, Ireland, Israel, Italy, the Netherlands, Poland, Sweden, and the United Kingdom. The study comprised a web-based longitudinal survey (baseline + 6-month follow-up) and optional weekly diary assessments conducted separately with caregivers and care recipients. From 14 August 2020 to 31 August 2021, 1872 caregivers and 402 care recipients were enrolled at baseline. Participants were recruited via Facebook and, to a lesser extent, via the study website or caregiver/patient organisations. Caregiver participants were predominantly female (87%) and primary caregivers (82%), with a median age of 55 years. A large proportion (80%) held at least post-secondary education, and two-thirds were married/partnered. Over half of the caregivers were employed (53%) and caring for a person with multiple chronic conditions (56%), and nearly three-quarters were caring for either a parent (42%) or a spouse/partner (32%). About three-quarters of care recipient participants were female (77%), not employed (74%), and had at least post-secondary education (77%), with a median age of 55 years. Over half of the care recipients were married/partnered (59%), receiving care primarily from their spouses/partners (61%), and diagnosed with multiple chronic conditions (57%). This study examining numerous potential influences on caregiving experiences provides an opportunity to better understand the multidimensional nature of these experiences. Such data could have implications for developing caregiving services and policies, and for future informal care research.

Perceived life balance among young adult students: a comparison between caregivers and non-caregivers.

BACKGROUND: Young adult caregivers (YACs) are individuals aged 18-25 years who provide care to a loved one (parent, sibling) with frailty, disability, or illness. As young adults, the transition period between adolescence and adulthood can be more challenging for YACs than their peers without care responsibilities (non-YACs), as they have to integrate caregiving with other life areas (education, relationships). This study compared the perceived life balance and the psychological functioning (i.e., burnout, negative and positive affect, and life satisfaction) between YACs and non-YACs. METHOD: An online cross-sectional survey was conducted among 74 YACs (85.1% females, 22.0 ± 2.1 years) and 246 non-YACs (76.0% females, 21.8 ± 2.0 years) studying in the Netherlands. The survey assessed demographic characteristics, caregiving characteristics (to be filled out only by the YACs), life balance, and psychological functioning. We used Chi-square tests for categorical variables and independent T-tests for continuous variables to examine possible differences in demographic characteristics between YACs and non-YACs. In addition, we used independent T-tests to compare the perceived life balance and psychological functioning between YACs and non-YACs. RESULTS: YACs and non-YACs were similar on all the demographic characteristics, except for living status; fewer YACs (44.6%) than non-YACs (59.3%) lived on their own, with or without other students/friends (χ2 = 16.3, p = 0.01). YACs perceived slightly less balance in life than non-YACs (d = -.29, p = .03). Both groups did not differ in experiencing burnout, affect, and life satisfaction (all p > .05). They experienced high levels of burnout and moderate levels of life satisfaction. DISCUSSION: Although YACs perceived a little less balance in life than non-YACs, this was not reflected in their psychological functioning. Healthcare professionals and school counselors may need to recognise the critical phase of all young adults and provide the support that could, for example, help them reduce burnout and enhance their quality of life.

The associations of dyadic coping strategies with caregiver's willingness to care and burden: A weekly diary study.

This weekly diary study investigated associations of weekly dyadic coping strategies with caregivers' willingness to care and burden. Multilevel modelling was applied to assess between- and within-person associations for 24 consecutive weeks in 955 caregivers. Greater willingness to care was reported in weeks when caregivers used more collaborative (b = 0.26, p < 0.001) and supportive (b = 0.30, p < 0.001) strategies, whereas uninvolved coping was associated with lower willingness to care (b = -0.44, p < 0.001). Using collaborative coping strategies was associated with lower weekly burden (b = -0.13, p < 0.001). A greater burden was reported in weeks when caregivers used more uninvolved (b = 0.19, p < 0.001) and controlling (b = 0.13, p < 0.001) coping strategies. A full understanding of whether caregivers' willingness to care and burden may be improved owing to weekly dyadic coping is essential for developing timely support for caregivers.

A Web-Based Mindfulness-Based Cognitive Therapy for Couples Dealing With Chronic Cancer-Related Fatigue: Protocol for a Single-Arm Pilot Trial.

BACKGROUND: Chronic fatigue is a common symptom among patients who have been treated for cancer. Current psychosocial interventions typically target the patient alone, despite growing evidence suggesting that a couples' approach can increase and broaden the efficacy of an intervention. Therefore, based on an existing web-based mindfulness-based cognitive therapy for patients, the couple intervention COMPANION was developed. OBJECTIVE: The primary objectives of this study are to determine the acceptability of COMPANION and its potential efficacy in reducing fatigue in patients with cancer. Our secondary objectives are to examine the feasibility of the trial procedures and the potential working mechanisms of the couple intervention. METHODS: We will conduct a single-arm pilot trial for couples (ie, patients with cancer with chronic fatigue and their partners). All couples are allocated to the web-based couple intervention that consists of psychoeducation, mindfulness, and cognitive-behavioral exercises. The 9 sessions of the intervention are supervised remotely by a trained therapist. Patients and partners will complete questionnaires before starting the intervention (T0), 2 weeks after completing the intervention (T1), and 1 month after T1 (T2). They will also fill out weekly diaries during the intervention period. A subsample of patients (n≈5) and partners (n≈5) as well as all the therapists providing COMPANION will participate in the final focus groups. Benchmark values have been defined to determine the acceptability (ie, ≥60% of couples complete the intervention and/or ≥70% of the participants are satisfied with the intervention) and potential efficacy (ie, a significant improvement in fatigue and/or a clinically relevant improvement in fatigue in 45% of the patients between T0 and T1) of the intervention. The trial procedures are deemed feasible if an average of at least three couples are included per recruiting month and/or adherence to the assessments is at least 65% for T1 and the diaries and 60% for T2. To establish potential working mechanisms, changes in affect, sleep, catastrophizing, partner communication and interactions, self-efficacy, mindfulness, and closeness will be examined. Quantitative outcomes will be interpreted along with the results from the focus groups. RESULTS: Data collection is expected to be completed by March 2024. CONCLUSIONS: This pilot trial will test the first web-based mindfulness-based cognitive therapy for couples targeting chronic cancer-related fatigue. Findings will indicate whether proceeding with a randomized controlled trial is warranted. TRIAL REGISTRATION: ClinicalTrials.gov NCT05636696; https://clinicaltrials.gov/study/NCT05636696. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/48329.

Does willingness to care fluctuate over time? A weekly diary study among informal caregivers.

OBJECTIVE: Informal caregivers are expected to be willing to care for relatives with care needs. Little is known about whether and how willingness to care changes over time. Using a weekly diary study, we examined changes in the willingness of 955 caregivers from nine countries. Caregivers provided information on their caregiving context, relationship type, and relationship satisfaction with the care recipient. METHODS AND MEASURES: For 24 consecutive weeks, caregivers evaluated willingness to care as it was 'right now'. RESULTS: Willingness differs from one caregiver to another (68% between-level variability) but also fluctuates in the same caregiver from week to week (32% within-level variability), with a decrease over 6 months (intercept = 8.55; slope = -0.93; p < .001). Regardless of individual differences in average willingness to care based on caregiving context and relationship satisfaction, caregivers reported decreases in willingness. Caregivers who presented one or more health conditions themselves reported higher weekly fluctuations in willingness than caregivers with no health conditions. CONCLUSION: Willingness is not a stable attitude because it decreases and caregivers experience fluctuations from week to week. A clearer understanding of weekly processes is optimal for monitoring the caregivers' well-being and tailoring interventions in line with weekly individual variations.

Attachment style and post-bariatric surgery health behaviours: the mediating role of self-esteem and health self-efficacy.

BACKGROUND: Attachment avoidance and anxiety have been linked to overweight and poor health behaviours, yet the mechanisms that underpin the relationship between attachment and health behaviours are not fully understood. Self-esteem and self-efficacy have been found to differ between attachment styles, rendering these variables potential mediators of the relationship. This longitudinal study investigated the serial mediation between preoperative attachment and 2-year post-operative health behaviours through self-esteem and health self-efficacy. METHODS: Participants were 263 bariatric surgery patients (75.7% females, aged 47.7 ± 10.4 years, BMI 38.9 ± 3.6 kg/m2) assessed before the operation and again one and two years after the surgery. Patients completed the Experiences for Close Relationships Brief Scale, Rosenberg Self-esteem scale, Weight Efficacy Lifestyle Questionnaire, Bariatric Surgery Self-Management Questionnaire, Exercise Self-Efficacy Scale and the Exercise Behaviour Scale. RESULTS: Higher preoperative attachment anxiety and avoidance were associated with lower self-esteem one year after bariatric surgery and poorer health self-efficacy two years after the surgery. Self-esteem and health self-efficacy mediated the relationships between preoperative anxious and avoidant attachment and 2- year post-operative diet adherence and physical activity. CONCLUSIONS: Helping patients to feel more worthy and reinforcing their beliefs about their own competences could lead to higher engagement with healthy lifestyle and adherence to treatment protocols, ultimately helping patients to achieve their goals for bariatric surgery. CLINICAL TRIAL REGISTRATION: BARIA: Netherlands Trial Register: NL5837 (NTR5992) https://www.trialregister.nl/trial/5837 . Diabaria: ClinicalTrials.gov identifier (NCT number): NCT03330756.

Contraceptive methods and fertility testing in young adult survivors of childhood cancer.

PURPOSE: Reproductive health is important, but often neglected in cancer survivorship care. This study explored contraceptive use and factors associated with fertility testing among young adult survivors of childhood cancer in Germany. METHODS: Young adult survivors of childhood cancer were identified through the German Childhood Cancer Registry and completed a mailed survey. Survivors were queried regarding contraceptive use, reproductive goals, uncertainty about fertility, and completion or interest in fertility testing. Multivariable stepwise logistic regression models were used to calculate Odds Ratios (OR) and 95% confidence intervals (CI) as a means of identifying factors associated with completion of and interest in fertility testing. RESULTS: Survivors (N = 472; 57.8% female; aged 23.3 ± 1.5 years, and 14.9 ± 5.0 years from diagnosis), reported high rates of contraceptive use, including 61.2% using a single method, 30.6% dual methods, and 8.1% no/less effective methods. Few survivors had completed fertility testing (13.0%), although 58.8% were interested. Having been diagnosed during adolescence (OR = 2.66, 95%CI: 1.39-5.09), greater uncertainty about fertility (OR = 1.16, 95%CI: 1.03-1.31), and use of dual contraceptive methods (OR = 1.94, 95%CI: 1.02-3.69) were associated with having completed fertility testing. Factors associated with interest in fertility testing included goals of wanting to have children (OR = 7.76, 95%CI: 3.01-20.04) and greater uncertainty about fertility (OR = 1.19 95%CI: 1.06-1.33). CONCLUSION: In this sample of young adults who survived childhood cancer, most reported contraceptive use. Few survivors had completed fertility testing, although more than half were interested. Interventions are needed to address potential barriers to fertility testing and help survivors manage fertility-related uncertainty.

Disclosing a history of childhood cancer to romantic partners.

OBJECTIVE: To describe young adult childhood cancer survivors' disclosure of their cancer history (i.e., disclosure behavior, difficulty, and timing), perceived partner responses, and associations with relationship status satisfaction. METHODS: German long-term survivors of childhood cancer (N = 509; response rate: 31.3%, age 21-26, 59.7% female) completed a registry-based nationwide survey (embedded mixed methods design, including closed and open-ended questions) on measures about disclosure history (behavior, difficulty, and timing), partner responses, and relationship status satisfaction. Statistical (χ2 -, t-, or F-tests) and qualitative analyses were conducted. RESULTS: Half of all survivors always disclosed their cancer history to romantic partners. Thereby, three themes for considering (non-)disclosure were identified: Survivors' attitudes, having integrated cancer as part of their identity, and anticipated effects on romantic relationships. About 40% indicated having no difficulties with disclosing their cancer history. The timing of disclosure varied, with most survivors disclosing after a few dates. Facilitators of disclosure were the visibility of their former illness (e.g., scars), having trust in a (potential) partner, getting older/mature, and previous positive experiences with disclosure. Few survivors (13.8%) had ever experienced negative responses from dating partners. Yet, those who had negative experiences, found it more difficult to disclose their cancer history. Survivors were overall rather satisfied with their relationship status, with partnered survivors reporting greater satisfaction than singles (Hedge's g = 1.68); and particularly partnered survivors with past positive responses being most satisfied. CONCLUSIONS: Young adult childhood cancer survivors appear rather open in disclosing their cancer history to (potential) romantic partners, and few experienced negative responses. Psycho-educational programs may emphasize such findings in helping to prevent fear of disclosure or avoidance of dating and disclosure among survivors.

Patient-Caregiver Dyads' Prognostic Information Preferences and Perceptions in Advanced Cancer.

CONTEXT: Prognostic information is considered important for advanced cancer patients and primary informal caregivers to prepare for the end of life. Little is known about discordance in patients' and caregivers' prognostic information preferences and prognostic perceptions, while such discordance complicates adaptive dyadic coping, clinical interactions and care plans. OBJECTIVES: To investigate the extent of patient-caregiver discordance in prognostic information preferences and perceptions, and the factors associated with discordant prognostic perceptions. METHODS: We conducted secondary analyses of a cross-sectional study (PROSPECT, 2019-2021). Advanced cancer patients (median overall survival ≤12 months) from seven Dutch hospitals and caregivers completed structured surveys (n = 412 dyads). RESULTS: Seven percent of patient-caregiver dyads had discordant information preferences regarding the likelihood of cure; 24%-25% had discordant information preferences regarding mortality risk (5/2/1 year). Seventeen percent of dyads had discordant perceptions of the likelihood of cure; 12%-25% had discordant perceptions of mortality risk (5/2/1 year). Dyads with discordant prognostic information preferences (P < 0.05) and dyads in which patients reported better physical functioning (P < 0.01) were significantly more likely to perceive the one-year mortality risk discordantly. CONCLUSION: Physicians should be sensitive to discordant prognostic information preferences and prognostic perceptions among patient-caregiver dyads in advanced cancer care.

Training for occupational health physicians to involve significant others in the return-to-work process of workers with chronic diseases: a randomized controlled trial.

PURPOSE: To determine the efficacy of the "Training for Occupational health physicians To Involve Significant others" (TOTIS) e-learning module for improving occupational health physicians' (OHPs) knowledge, attitudes, and self-efficacy regarding involving significant others in the return-to-work process. MATERIALS AND METHODS: A randomized controlled trial with 87 OHPs, involving an intervention group and a wait-listed control group. Between-group differences in knowledge, attitude, and self-efficacy outcomes, and retention of effects were assessed using ANOVA and paired t-tests. Reactions to the e-learning module were analyzed with descriptive statistics and thematic analysis. RESULTS: We found moderate to large effects on OHPs' knowledge (p < 0.001, ηp2 = 0.202), attitudes (p = 0.003, ηp2 = 0.098), and self-efficacy (p < 0.001, ηp2 = 0.237), with retention of all changes at 10-week follow-up. OHPs graded the e-learning module with a mean score of 7.9 out of 10 (SD = 1.11) and indicated that the module increased their awareness of the role of significant others and encouraged them to address this more often. CONCLUSIONS: The TOTIS e-learning module and accompanying materials are valuable resources for OHPs to learn how significant others influence work outcomes of workers with chronic diseases and to manage their involvement in the re-integration process. TRIAL REGISTRATION: This study is registered in the Netherlands Trial Register under trial number NL8744; https://www.trialregister.nl/trial/8744.Implications for rehabilitationThe TOTIS e-learning module is the first evidence-based training to improve the knowledge, attitudes, and self-efficacy of occupational health physicians with regard to involving significant others in the re-integration process of workers with chronic diseases.The e-learning module and accompanying tools can increase the awareness of occupational health physicians about the role of significant others and encourage them to address the role of significant others in the re-integration process of sick-listed workers.It could be beneficial to expand on the e-learning module with a face-to-face training program involving group interaction, peer discussion, and skills development.

Self- and other-efficacy are related to current smoking during a quit attempt: a daily diary study in single-smoking couples.

OBJECTIVE: Self-efficacy is an important predictor of smoking cessation. Partners' confidence in the other partner's health behaviour, or other-efficacy, seems predictive of beneficial health outcomes, but has not yet been examined with respect to smoking cessation. This diary study examined whether daily fluctuations and general levels of non-smoking partners' other-efficacy relates to same- and next-day smoking, over and above smokers' own self-efficacy. DESIGN: Smokers and their non-smoking partners (169 couples) participated in an intensive longitudinal study over 21 days with end-of-day diaries, starting on the day of planned cessation. MAIN OUTCOME MEASURES: Smoking abstinence. RESULTS: Smokers who had higher self-efficacy than other smokers in the sample had a lower probability of smoking on a given day, regardless of smoking the previous day. On days with higher self-efficacy and other-efficacy than usual, smokers had a lower probability of smoking. CONCLUSION: To start the quit attempt with high self-efficacy, and maintain it throughout the quit attempt seems important for successful abstinence, as this might help to overcome a lapse. This is the first study to show that other-efficacy is related to smoking behaviour. However, more research is needed regarding the temporal order of smoking and efficacy, from both smokers and spouses.

Psychosexual Development and Sexual Functioning in Young Adult Survivors of Childhood Cancer.

BACKGROUND: Childhood cancer and its treatment can impair survivors' development throughout life, particularly psychosexual development, which can be affected in complex ways and is crucial for survivors' well-being. Yet, research is scarce. AIM: This study assessed psychosexual development (milestone attainment, age at attainment, perceived timing) in young adult survivors of childhood cancer. It further examined sexual satisfaction and sexual functioning, and whether survivors' perceived timing of sexual debut was related to satisfaction or functioning. METHODS: A registry-based nationwide survey was completed by N = 492 German survivors of childhood cancer (age 21-26 years, 6-26 years postdiagnosis). They completed standardized measures of psychosexual milestones (eg, first kiss, sexual debut), sexual satisfaction, and sexual functioning. Psychosexual development was compared to normative data (N = 1,533). OUTCOMES: Psychosexual development, sexual satisfaction, and sexual functioning were the primary outcome measures. Psychosexual development was characterized in three ways: milestone attainment (yes/no), age at attainment, perceived timing ("right" time, too early/late). RESULTS: Milestone attainment was comparable to normative data, except for sexual debut: Survivors were less often experienced (82.5% vs 88%; P = .002) and older at sexual debut (17.4 vs 16.2 years; g = 0.55), but most survivors (58.3%) perceived their timing as "right." Survivors of brain tumors were least likely to have had their sexual debut, but if experienced age at sexual debut was similar to other survivors. Female survivors were somewhat more experienced than males (eg, first kiss, first relationship; <10% difference), but they were somewhat older when they first kissed (g = 0.26). Age at diagnosis was unrelated to milestone attainment. Perceived early/late sexual debut was related to lower satisfaction in female survivors (P = .026), but unrelated to sexual dysfunction. Instead, partnered men reported particularly low dysfunction whereas women reported similar levels of sexual dysfunction irrespective of their relationship status (P = .049). Overall, sexual functioning was favorable (60.2%: not/barely problematic). CLINICAL IMPLICATIONS: Most survivors reported favorable sexual satisfaction and functioning, but a minority of survivors may need supportive services. STRENGTHS & LIMITATIONS: This project represents one of few large-scale studies on psychosexual development in childhood cancer survivors relative to normative data, and is the first to link development to sexual satisfaction/functioning. Assessing satisfaction/functioning with validated, but brief measures limits detailed insights, but was inclusive of any sexual orientation. Medical background information based on registry data was limited. CONCLUSION: Results showed normative psychosexual development (except for sexual debut) in most survivors. A self-determined attitude toward sexuality (ie, engaging in sexual activities at the "right" time) may generally determine positive sexual experiences. Lehmann V, Gerhardt CA, Baust K, et al. Psychosexual Development and Sexual Functioning in Young Adult Survivors of Childhood Cancer. J Sex Med 2022;19:1645-1654.

Correction: Using the Transformative Storytelling Technique to Generate Empowering Narratives for Informal Caregivers: Semistructured Interviews, Thematic Analysis, and Method Demonstration.

[This corrects the article DOI: 10.2196/36405.].

Patients' and parents' experiences during wound care of epidermolysis bullosa from a dyadic perspective: a survey study.

BACKGROUND: Epidermolysis bullosa is a rare, often severe, genetic disorder characterized by fragility of the skin and mucous membranes. Despite the important role of parents during wound care, an essential factor in adapting to this disease, studies focusing on the parent-child relationship during wound care are scarce. The current study is aimed at addressing this gap. METHODS: A quantitative study among 31 children (n = 21 ≤ 17 years; n = 10 17-25 years) and 34 parents (including 27 parent-child dyads) was conducted to examine the relationship between pain, itch, anxiety, positive and negative feelings, and coping strategies assessed with the newly developed Epidermolysis Bullosa Wound Care List. The majority of the analyses were descriptive and the results were interpreted qualitatively because of the small sample size. RESULTS: Children and parents both showed significantly more positive (i.e. 'protected', 'proud', 'calm', 'connected to each other' and 'courageous') than negative feelings (i.e. 'helpless', 'angry', 'insecure', 'guilty', 'gloomy' and 'sad') during wound care, with parents reporting both feelings more than children. The more children experienced pain, the more they were anxious, had negative feelings, were inclined to use distraction, to postpone wound care and to cry. The more parents experienced feelings (either positive or negative), the more likely they sought distraction. With regard to child-parent dyads the results showed that the more children expressed anxiety, the more parents experienced negative feelings. Furthermore, those who reported more negative feelings were more likely to hide their feelings, while those who reported more positive feelings were more inclined to show their feelings. Pain, itch and anxiety in the child were associated with more distraction or postponement of wound care by the parent. CONCLUSION: This study underlines the importance of paying attention to the relationship between feelings and coping strategies in child-parent dyads in the management of pain and anxiety during wound care. Further research could provide more insight how these feelings and coping strategies are related to the psychological well-being of both the child and the parent in the short term as well as in the long term.

Using the Transformative Storytelling Technique to Generate Empowering Narratives for Informal Caregivers: Semistructured Interviews, Thematic Analysis, and Method Demonstration.

BACKGROUND: The transformative storytelling technique is an innovative top-down approach to narrative therapy that aims to provide building blocks for creating flourishing narratives for target groups or populations. This approach acts as a facilitator for implementing the human-centered design in developing digital self-help tools for larger samples or target groups. OBJECTIVE: This study applied the transformative storytelling technique, as a new approach in mental health, to develop empowering audio narratives for informal caregivers. METHODS: A narrative inquiry was conducted with 17 informal caregivers (16 women and 1 man) who completed a semistructured interview, "Caregiver Life Story," acquiring information about the beginning of the role, rising action, and critical point of the role. The participants' ages ranged from 41 to 84 years, with all participants providing care for at least a 6-month period. This inquiry was guided by the transformative storytelling technique, and aimed to collect data relevant to creating fictional stories based on real-life themes. RESULTS: Twenty-five overall themes were distinguished across three a priori-set categories, providing narrative building blocks for the informal caregiver life stories. The final empowering caregiver life story was created as an example for this study, demonstrating the application of the transformative storytelling technique in an informal care context. CONCLUSIONS: The creation of empowering stories for populations or target groups in mental health care requires a unified and guided approach that will follow clear guidelines and storytelling principles. The transformative storytelling technique is a first of its kind in the mental health context, representing an initial step in enabling and supporting the creation of meaningful stories and the development of relatable, but productive, narratives. Such narratives have the potential to serve across media and digital platforms for supporting and improving well-being, and potentially triggering self-change in the target group or population.

Ethical review procedures in international internet-based intervention studies.

International internet-based studies could be accessible by participants from various countries worldwide. However, the jurisdiction of research ethics committees (RECs) or institutional review boards (IRBs) is bound to geographical state or country borders. How can researchers deal with the geographical boundaries in the jurisdiction of RECs/IRBs versus the worldwide, open character of international internet-based research? Should ethical approval be sought in each country where participants will be recruited? In this paper, we want to share our challenges in setting up the ethical review procedures in an international internet-based mHealth intervention study, to further the discussion on ethical procedures in internet-based research.

Beyond "being open about it": A systematic review on cancer related communication within couples.

Extensive literature addresses the correlates of communication behaviors within couples in the specific stressful context of oncology. This literature focused mainly on the concepts of disclosure, concealment, holding back and protective buffering to gain more insight into the potential benefits of open communication on the psychological and relational wellbeing of the patient, the spouse and the dyad. The current systematic review aims to present this literature, summarize research findings and suggest empirical, theoretical and clinical implications. Methods: The search method applied in this review was in line with the PRISMA guidelines. Key words related to couples' communication and oncology were used to identify relevant studies according to title and abstract fields from 1.1.2000 until 31.1.22. Results: Out of 3277 papers, a total of 55 articles were identified as relevant for this review. These quantitative studies used cross-sectional and longitudinal designs. Overall, integrating findings from different studies showed that while avoiding communication is negatively associated with psychological and relational wellbeing, the benefits of disclosure seems to be dependent on different factors including the partner's responsiveness, contextual factors and personal characteristics. The existing literature is limited in providing data regarding the nature of adequate or helpful partner responses, the best timing, and the specific topics that are recommended to be disclosed such as specific fears. Most importantly, it is limited in heterogeneity of constructs of communication that were studied, scales that were used and diverse mediators and moderators that were examined. Accordingly, an effort to reach consensus of definition and assessment of communicative behavior is recommended for future studies, and addressing responsiveness to communicative initiations seems to be important for clinical practice.

Dyadic associations between perceived social support and psychological well-being in caregivers and older care recipients.

Caregiving can be burdensome for both family caregivers and older care recipients (i.e., adults 75 years or older with care needs). This study aimed to determine dyadic associations between caregivers' and care recipients' perceived social support from others (e.g., family and friends) and psychological well-being as a dyad. Caregivers and care recipients (N = 215 dyads) in this cross-sectional study were recruited by pensioner trade unions in Italy. Both members of the dyad completed the World Health Organization-Five Well-Being Index (WHO-5). Social support was measured with the Carers of Older People in Europe Index for caregivers and the Oslo-3 Scale for care recipients. Dyadic data were analyzed with the actor-partner interdependence model. Caregivers' and care recipients' well-being was moderately correlated (r = 0.41, p < .01), with care recipients reporting significant lower well-being (MCR = 30.95 vs. MCG = 46.45). Social support perceived by the caregivers was positively associated with their own well-being (actor effect; ß = 3.31, p < .001) and with the care recipients' well-being (partner effect; ß = 0.58, p < .001). No significant care recipient actor and partner effects were detected. This study provided evidence on crossover effects between social support and well-being in caregiving dyads. Findings have implications for research and clinical practice in familial aged care. Family interventions targeted at the caregivers' broader social environment might enhance both dyad members' well-being. (PsycInfo Database Record (c) 2022 APA, all rights reserved).