Parent-child bonding and attachment during pregnancy and early childhood following congenital heart disease diagnosis

Diagnosis and treatment of congenital heart disease (CHD) can present challenges to the developing parent-child relationship due to periods of infant hospitalisation and intensive medical care, parent-infant separations, child neurodevelopmental delay and feeding problems, and significant parent and child distress and trauma. Yet, the ways in which CHD may affect the parent-child relationship are not well-understood. We systematically reviewed the evidence on parental bonding, parent-child interaction, and child attachment following CHD diagnosis, according to a pre-registered protocol (CRD42019135687). Six electronic databases were searched for English-language studies comparing a cardiac sample (i.e., expectant parents or parents and their child aged 0-5 years with CHD) with a healthy comparison group on relational outcomes. Of 22 identified studies, most used parent-report measures (73%) and yielded mixed results for parental bonding and parent-child interaction quality. Observational results also varied, although most studies (4 of 6) found difficulties in parent-child interaction on one or more affective or behavioural domains (e.g., lower maternal sensitivity, lower infant responsiveness). Research on parental-fetal bonding, father-child relationships, and child attachment behaviour was lacking. Stronger evidence is needed to determine the nature, prevalence, and predictors of relational disruptions following CHD diagnosis, and to inform targeted screening, prevention, and early intervention programs for at-risk dyads

Patient-doctor agreement on recall of clinical trial discussion across cultures

Background The purpose was to investigate patient-doctor agreement on clinical trial discussion cross-culturally. Methods In the International Breast Cancer Study Group Trial 33-03 on shared decision-making for early breast cancer in Australian/New Zealand (ANZ) and Swiss/German/Austrian (SGA) centers, doctor and patient characteristics plus doctor stress and burnout were assessed. Within 2 weeks post-consultation about treatment options, the doctor and patient reported independently, whether a trial was discussed. Odds ratios of agreement for covariables were estimated by generalized estimating equations for each language cohort, with doctor as a random effect. Results In ANZ, 21 doctors and 339 patients were eligible; in SGA, 41 doctors and 427 patients. In cases where the doctor indicated ‘no trial discussed', 82% of both ANZ and SGA patients agreed; if the doctor indicated ‘trial discussed', 50% of ANZ and 38% of SGA patients agreed, respectively. Factors associated with higher agreement were: low tumor grade and fewer patients recruited into clinical trials in SGA; public institution, patient born in ANZ (versus other), higher doctor depersonalization and personal accomplishment in ANZ. Conclusion There is discordance between oncologists and their patients regarding clinical trial discussion, particularly when the doctor indicates that a trial was discussed. Factors contributing to this agreement vary by cultur

Decision aids for breast cancer surgery: a randomised controlled trial

In Chinese women who require breast cancer surgery, use of a decision aid booklet reduces decisional conflict, treatment decision-making difficulty, and post-surgery decision regret. Decision aids should be available as part of the routine clinical service, specifically to support post-consultation decision making.published_or_final_versio

Correlates of unmet needs and psychological distress in adolescent and young adults who have a parent diagnosed with cancer.

Objective. Young people who have a parent with cancer experience elevated levels of psychological distress and unmet needs. In this study we examined the associations between demographics, cancer variables, and family functioning; and levels of distress and unmet needs amongst young people who have a parent diagnosed with cancer. Methods. Young people aged 12 -24 with a parent with cancer (n=255) completed the Offspring Cancer Needs Instrument (unmet needs), the Kessler-10 (distress), and the Family Relationship Index (family functioning), along with measures of demographics and cancer variables (such as: age, sex, time since cancer diagnosis). Variables associated with distress and unmet needs (including unmet need domains) were assessed using multiple linear regression. Results. Being female and older, having more unmet cancer needs and poorer family functioning was associated with increased distress. Having a father with cancer, a shorter time since diagnosis, and poor family functioning were associated with increased unmet needs. Family conflict and expressiveness were particularly important components of family functioning. Having a parent relapse with cancer was also associated with unmet needs in the domains of practical assistance, ‘time out’, and support from other young people who have been through something similar. Conclusions. Delineating factors associated with increased distress and unmet needs assists in identifying at risk young people allowing improved assessment and tailoring of support to improve the psychosocial outcomes of young people impacted by parental cancer.beyondblu