Little data exist on provider perspectives about counselling and shared decision-making for complex CHD, ways to support and improve the process, and barriers to effective communication. The goal of this qualitative study was to determine providers’ perspectives regarding factors that are integral to shared decision-making with parents faced with complex CHD in their fetus or newborn; and barriers and facilitators to engaging in effective shared decision-making.

We conducted semi-structured interviews with providers from different areas of practice who care for fetuses and/or children with CHD. Providers were recruited from four geographically diverse centres. Interviews were recorded, transcribed, and analysed for key themes using an open coding process with a grounded theory approach.

Interviews were conducted with 31 providers; paediatric cardiologists (n = 7) were the largest group represented, followed by nurses (n = 6) and palliative care providers (n = 5). Key barriers to communication with parents that providers identified included variability among providers themselves, factors that influenced parental comprehension or understanding, discrepant expectations, circumstantial barriers, and trust/relationship with providers. When discussing informational needs of parents, providers focused on comprehensive short- and long-term outcomes, quality of life, and breadth and depth that aligned with parental goals and needs. In discussing resources to support shared decision-making, providers emphasised the need for comprehensive, up-to-date information that was accessible to parents of varying situations and backgrounds.

Provider perspectives on decision-making with families with CHD highlighted key communication issues, informational priorities, and components of decision support that can enhance shared decision-making.

Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment decision is critical for developing interventions to improve counselling for these families.

We conducted focus groups in four academic medical centres across the United States of America with a purposive sample of parents who chose termination, palliative care, or surgery for their foetus or neonate diagnosed with severe CHD.

Ten focus groups were conducted with 56 parents (Mage = 34 years; 80% female; 89% White). Results were constructed around three domains: decision-making approaches; values and beliefs; and decision-making challenges. Parents discussed varying approaches to making the decision, ranging from relying on their “gut feeling” to desiring statistics and probabilities. Religious and spiritual beliefs often guided the decision to not terminate the pregnancy. Quality of life was an important consideration, including how each option would impact the child (e.g., pain or discomfort, cognitive and physical abilities) and their family (e.g., care for other children, marriage, and career). Parents reported inconsistent communication of options by clinicians and challenges related to time constraints for making a decision and difficulty in processing information when distressed.

This study offers important insights that can be used to design interventions to improve decision support and family-centred care in clinical practice.

The FAMCARE Scale was originally designed to measure family satisfaction with advanced cancer care. The current study evaluated the instrument's psychometric qualities when used in the long-term care (LTC) setting.

In a prospective cohort study in 2004, the 20-item instrument was administered via telephone to family members of 51 patients receiving LTC in Veterans Affairs facilities. Satisfaction scores on a 5-point Likert scale were used for factor analysis and internal consistency evaluation.

Although 16 patients were in geriatric palliative care and 35 were in nursing home care, scores of their family members did not vary based on care unit. The total satisfaction score was high, with a mean (SD) of 44.7 (11.9) and a Cronbach alpha of 0.94. Inter-item correlations were low for care availability items (range, 0.01–0.59). Two items—availability of a hospital bed and availability of nurses to the family—had low eigenvalues (0.26 and 0.18, respectively) and weak correlations with the total score (0.23 and 0.16, respectively).

In the LTC setting, FAMCARE appears to have good internal consistency, but it may be preferable to exclude the two items with weak correlations and to use a 10-point visual analog scale.