To characterise neonatal intensive care unit (NICU) parents’ grieving process across time and to identify their perspectives on the healthcare providers’ actions that acted as facilitators or barriers to the grieving process in the short (3–9 months) and longer term (18–24 months).

Longitudinal mixed-methods study combining standardised grief and care satisfaction scales with qualitative data collected through semistructured interviews. The qualitative component was guided by an interpretive description approach, which is well-suited for generating clinically relevant insights into complex human experiences such as parental grief. Triangulating quantitative and qualitative data enhanced insight into how parental grief and perceptions of care evolved between 3–9 months and 18–24 months post loss.

Tertiary-level NICU hospital in British Columbia, Canada.

13 parents participated in the study, including 10 mothers and three fathers. Among them were two couples who participated as individuals. Their median age was 35 years (IQR: 32–38).

Quantitative data obtained through the application of the Perinatal Grief Scale (PGS) and care satisfaction scale and qualitative data collected through semistructured interviews. Data were collected at two points (3–9 months and 18–24 months post loss) to track parents’ grief over time.

The PGS scores indicated active grieving without complicated grief, while the Care Satisfaction Scale reflected high overall satisfaction with care. Thematic analysis identified two primary grieving stages: the initial traumatic event during NICU hospitalisation and the complex adjustment to life post loss. Key factors influencing parents’ coping mechanisms included respecting the infant’s dignity, enhancing communication and decision-making, preserving the bond between parents and the NICU team, nurturing enduring connections with the infant and aiding in finding meaning from the experience.

The study outlined the stages parents experience during and after infant loss, offering practical steps for NICU professionals to aid families in their healing process.

Prostate cancer (PCa) is the second most common cancer in men worldwide and genetic factors and family history significantly increase the risk of PCa. Men at increased risk for PCa often experience higher PCa-specific anxiety and distress. Comprehensive prevention strategies for men with familial or genetic PCa predisposition are lacking. Consequently, the psychological impact, facilitators and barriers for risk-adapted PCa prevention lack comprehensive study. The novel prospective registry and prevention clinic ‘ProFam-Risk’ (prevention clinic for familial PCa risk) at the University Hospital Düsseldorf offers personalised risk assessment and risk-adapted prevention recommendations for men with familial or genetic PCa predisposition. As part of this research project, this study (‘ProFam-Psych’ - risk-adapted prevention clinic for familial and genetic prostate cancer: psychosocial effects; funded by German Cancer Aid) aims to evaluate the longitudinal psychosocial trajectories associated with this novel prevention clinic.

In a longitudinal observational mixed-methods design, psychosocial outcomes will be assessed in participants of the prevention clinic (case group, CAG) and compared with urology patients without increased risk for PCa (control group, COG). Psychosocial outcomes will be collected at four time points in the CAG (T0: baseline; T1: after first visit; T2: after risk stratification consultation; T3: follow-up 6 months after T2) and at two time points in the COG (T0: baseline during inpatient stay; T1: post-inpatient stay). Recruitment started in 2023, and the recruitment target is n=225 participants (CAG) and n=118 participants (COG). Primary endpoint is the longitudinal course of PCa-specific anxiety (Memorial Anxiety Questionnaire for Prostate Cancer) in the CAG. Secondary endpoints include the comparison of T0 and T1 outcomes between the CAG and COG and the assessment of changes in perceived PCa risk and perceived personal control in the CAG. To assess facilitators and barriers to participation in the risk-adapted PCa prevention clinic, a minimum of n=12 semi-structured qualitative interviews will be conducted, with recruitment continuing until data saturation is reached. Qualitative data will be analysed using qualitative content analysis.

Ethics approval from the Medical Faculty of the Heinrich Heine University Düsseldorf was obtained (2023-2551). Results of the main objective and each of the secondary endpoints will be submitted for publication in a peer-reviewed journal.

DRKS.de, DRKS00032350. Prospectively registered with the German Clinical Trials Register (DRKS) on 14 September 2023.