Despite growing interest in the quality of life of individuals with single-ventricle CHD, the experiences of their siblings remain largely underexamined and heavily reliant on parent-reported outcomes. This study explores the experiences of siblings of individuals with single-ventricle CHD through a qualitative analysis of self-reported narratives.

Siblings of individuals with single-ventricle CHD aged 9 years and older participated in age-based Experience Group sessions. Trained facilitators used semi-structured, open-ended questions to prompt discussion. Qualitative data were coded using inductive thematic analysis to identify salient themes across narratives.

Eighteen siblings participated. Participants (50%, n = 9 female) ranged in age from 9 to 59 years (median age 22 years); most (72%, n = 13) were older than their sibling with single-ventricle CHD. Five themes emerged: 1) adapting to their sibling’s physical limitations, 2) assuming supportive roles in the family, 3) navigating complex and often conflicting emotions, 4) deepening their understanding of the condition over time, and 5) finding normalcy throughout their childhood.

This study provides valuable insights into the nuanced experiences of siblings of individuals with single-ventricle CHD, underscoring the key roles they play in the care journey and describing the unique experiences that have shaped them. These findings can inform tailored, family-centred care models that intentionally include siblings in psychosocial assessment, support interventions, and age-appropriate medically related education and communication.

Caregivers of children with CHD frequently experience psychological distress related to the chronic and unpredictable demands of their child’s diagnosis. Peer support can mitigate distress and promote resilience, but few studies have explored factors affecting its implementation or the experiences of those who provide or facilitate peer support. This study aimed to identify barriers, facilitators, and recommendations for optimising peer support from the unique perspectives of leaders of patient/family organisations within the CHD community.

Using online crowdsourcing methods, qualitative data on the implementation of peer support was collected from 16 leaders representing five patient/family organisations. Crowdsourced data were coded and analysed using thematic analysis, with themes categorised as barriers, facilitators, and recommendations.

Four overarching themes were constructed: 1) Training and Expertise, highlighting the value of lived experience alongside the need for structured training in mental health and bereavement; 2) Peer Mentor Wellbeing, including burnout, secondary traumatic stress, and the importance of clear role boundaries and expectations; 3) Partnerships and Collaboration, emphasising relationships with clinical care centres; and (4) Support for all Families and Family Members, including fathers, siblings, and bereaved families.

The results provide insight into the implementation of peer support, with recommendations for next steps including hospital-community partnerships to improve access and intentional programme design to protect peer mentor wellbeing. Further understanding of caregiver and peer mentor needs is critical for elucidating ways to develop and implement optimal models of peer support.

Children born with single-ventricle heart disease face a myriad of medical comorbidities, psychological risks, and quality of life challenges as they age. Parent perspectives on their care from diagnosis through development are critical to understand best ways and times to intervene to promote child and family adjustment to illness.

Parents of children with status post-Fontan procedure were recruited to complete an electronic qualitative survey exploring parent perspectives of care. Grounded theory was utilised to analyse the data and identify themes and subthemes.

Twenty-four parents completed the survey, describing their experience from diagnosis through the early years of treatment and into childhood and adolescence. Seven core themes were identified: survival and hope, parent stress and support, early stress and development, quality of life, increased independence, connection to the team, and communication. Initially, parents shared early worry regarding survival as they learned more about the condition and underwent surgeries. Later, parents supported their child’s development and balanced ongoing hypervigilance with promotion of normalcy in their child’s life. Quality of life and behavioural health concerns emerged amongst other medical comorbidities, and parents emphasised the need for both child and parent support in navigating family life with this illness.

Parent perspectives highlighted the importance of family-centred, multidisciplinary care models that integrate medical subspeciality and psychosocial services for holistic care of children born with single-ventricle heart disease. Implications for care across development and interventions for children and parents are discussed.

With more than 1 million children in the United States living with a heart defect or condition, it is important to identify interventions that may minimise the long-term impacts of repeated medical surveillance and care. Thus, the purpose of this quasi-experimental study was to examine relationships between facility dog intervention and young children’s anxiety during outpatient echocardiogram.

Participants were seventy children aged 18 months to 8 years undergoing echocardiogram in a paediatric cardiology clinic. Child anxiety was scored by a trained nurse observer pre- and post-procedure using the modified Yale Preoperative Anxiety Scale. Facility dog intervention included individualised play, positioning, therapeutic conversation and touch, and emotional support throughout to promote coping and compliance. Parents and staff completed a post-procedural perceptions survey about their experiences.

Paired samples t-tests demonstrated child anxiety levels were significantly lower post-procedure compared to pre-procedure (Z = −3.974, p < .001). This direction held for nearly all participants; however, those with prior echocardiogram history demonstrated significantly higher anxiety levels at the pre-procedural timepoint (z = −2.442, p = .015). Caregivers (97.2%) and staff (87.9%) agreed or strongly agreed that facility dog intervention was helpful in this context.

Facility dog intervention was associated with a significant reduction in young children’s anxiety across procedural timepoints in outpatient echocardiography. The intervention was perceived as helpful by families and staff; no workflow changes or barriers were noted. Thus, facility dog intervention may be a well-received and promising care innovation for this vulnerable chronic population.

Hoarding disorder (HD) is primarily characterised by difficulties with discarding possessions. Evidence-based psychological interventions such as CBT have been found to be of benefit to people with HD. However, people with HD may receive a psychosocial intervention provided by other professions such as social workers or a multi-disciplinary team before receiving psychological therapy, if at all.

The aim of this systematic review is to evaluate psychosocial interventions for HD.

Searches were conducted on three databases (PsycInfo; MEDLINE; Embase) and grey literature, and the search strategy was designed to capture psychosocial interventions for adults with HD.

Studies (n=5) were included where the outcome was related to a psychosocial factors, such as fire safety, tenancy preservation and QoL. These psychosocial interventions show improvements in those with HD, with effect sizes ranging from d=0.86 to d=1.41.

Despite the limited research on psychosocial interventions for HD, this systematic review suggests it is a promising area for further research in this area.

1. (1) To identify what psychosocial interventions are available for people experiencing hoarding difficulties.

2. (2) To identify how available psychosocial interventions for hoarding difficulties are delivered and by whom.

3. (3) To examine the effectiveness of psychosocial interventions for people experiencing hoarding difficulties.

Patients with univentricular hearts can only be palliated by a staged surgical procedure that carries a high morbidity and mortality risk. The aim of this study was to examine the emotional demands, psychosocial burden, and quality of life of parents with children with univentricular hearts compared to parents of children with a simple heart defect, those with no heart defect and children with chronic diseases.

An anonymous questionnaire was created to interview parents about their quality of life, stressors, needs, strategies for coping with illness, and partnership satisfaction.

73 families participated in the study. Parents of children with univentricular hearts experience a significantly higher psychosocial burden, limitations in daily life, and distress in family interactions, as well as greater emotional distress compared to the other study groups. When comparing the families of children with other chronic diseases (e.g. cystic fibrosis, chronic arthritis and diabetes), these differences remained significant.

The study confirms a higher psychosocial burden, restrictions in daily life and a lower quality of life of parents with children with univentricular hearts, compared to parents of children with simple heart defects and parents of heart-healthy children or those with other chronic diseases. Since this condition persists until adolescence and adulthood, the families are exposed to special challenges and stresses throughout their lives. This has yet to be adequately addressed in the management of these families.

This study evaluated the effectiveness of Baby Friendly Spaces (BFS), a psychosocial support program for Rohingya refugee mothers of malnourished young children in Bangladesh. Because BFS was already being implemented, we examined the benefit of enhancing implementation supports.

In matched pairs, 10 sites were randomized to provide BFS treatment as usual (BFS-TAU) or to receive enhanced implementation support (BFS-IE). 600 mothers were enrolled and reported on maternal distress, functional impairment, subjective well-being and coping at baseline and 8-week follow-up. Data were analyzed using multilevel linear regression models to account for clustering; sensitivity analyses adjusted for the small number of clusters.

Significant within-group improvements in BFSIE were observed for distres (−.48, p = .014), functional impairment (−.30, p = .002) and subjective well-being (.92, p = .011); improvements in BFS-TAU were smaller and not statistically significant. Between-group comparisons favored BFS-IE for distress (β = −.30, p = .058) and well-being (β = .58, p = .038). Sensitivity adjustments produced p-values above .05 for all between-group comparisons.

Feasible adjustments to implementation can improve program delivery to increase impact on maternal distress and well-being. Although results should be interpreted with caution, study design limitations are common in pragmatic, field-based research.

To explore how the COVID-19 pandemic affected fetal care, social support, and emotional functioning for women carrying a fetus with CHD.

This was a single-centre qualitative study of 31 women who received a prenatal diagnosis of CHD during the pandemic. Patients completed semi-structured interviews about their experiences with fetal care, social support, and perceptions of risk to themselves and their fetus. Consistent themes regarding the impact of the pandemic were identified using an inductive thematic approach. Demographic data were collected via self-report and chart review.

Women generally reported consistent access to fetal care throughout the pandemic, with frequent use of telemedicine in addition to in-person care, but negative impacts resulting from restrictions on family support at appointments. Limited access to social support overall and a loss of pregnancy traditions were described. Many women reported feeling isolated and experiencing worries and fears about COVID-19 but also noted feeling supported by their healthcare team. Partner/family support during appointments and connection to peer-to-peer support were identified as recommendations to mitigate negative impacts.

Women carrying a fetus with CHD during the COVID-19 pandemic experienced unique stressors that may affect mental health. However, many also experienced unexpected supports that may mitigate effects of pandemic-related stressors. Results can inform efforts to promote positive family outcomes during and following the COVID-19 pandemic.