Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study

Abstract

Background: Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare providers have not been well described. Aim: (1) To investigate parental experiences with clinicians and (2) to provide practical recommendations and behaviors clinicians could emulate to avoid conflict. Design: Participants were asked to describe their best and worse experiences, as well as supportive clinicians they met. The results were analyzed using mixed methods. Setting/participants: Parents of children with trisomy 13 and 18 who were part of online social support networks. A total of 503 invitations were sent, and 332 parents completed the questionnaire about 272 children. Results: The majority of parents (72%) had met a supportive clinician. When describing clinicians who changed their lives, the overarching theme, present in 88% of answers, was trust. Parents trusted clinicians when they felt he or she cared and valued their child, their family, and made them feel like good parents (69%), had appropriate knowledge (66%), and supported them and gave them realistic hope (42%). Many (42%) parents did not want to make—or be part of—life-and-death decisions. Parents gave specific examples of supportive behaviors that can be adopted by clinicians. Parents also described adverse experiences, generally leading to conflicts and lack of trust. Conclusion: Realistic and compassionate support of parents living with children with trisomy 13 and 18 is possible. Adversarial interactions that lead to distrust and conflicts can be avoided. Many supportive behaviors that inspire trust can be emulated.

Understanding the child-doctor relationship in research participation: a qualitative study

“…Parents of children with a rare disease for example, expressed the importance of mutual trust in decisions about treatment, [32]. and others recognized the importance of tailored care and support for their children with trisomy 13 and 18 [33]. Trust and respect in relationships with healthcare providers were found to be essential facilitators for shared decision-making in pediatrics [34].…”

Discipline-Specific Perspectives on Caring for Babies with Trisomy 13 or 18 in the Neonatal Intensive Care Unit

“…32 For families who heard in pregnancy that their child would automatically not be a candidate for resuscitation or would not be considered for medical interventions due to genetics, the experience is one of perceived rejection, diminished dignity, and devaluation of their child's life. 26,28,32,33 Medical staff sensitivity to prior experiences warrant supportive listening, learning about family's hopes, and partnership in focusing on goals of care for the baby while viewing each baby as unique. 34 There exists a vibrant social media and blogging network specific to these diagnoses with families using Facebook (89%) and blogs (59%) to connect with support (90%), gather information (81%), and share information (73%).…”

Ethical considerations for cardiac surgical interventions in children with trisomy 13 and trisomy 18

“…A recent study suggested that as many as half of parents of children with trisomy 13 and 18 do not want to be a part of life and death decisions for their child. (Janvier et al, 2019). It is then incumbent upon the medical team to make informed, compassionate recommendations (Feudtner, 2007;Jacobsen, Blinderman, Alexander Cole, & Jackson, 2018).…”

“…The increasing discussion of medical interventions for infants with trisomy 13, 18, and 21 in social media and other patient‐facing forums means that more and more parents may be requesting therapies that are offered at a few centers for these patients (Arthur & Gupta, ; Janvier, Farlow, & Barrington, ; Janvier et al, ). Most children with trisomy 21, 13, and 18 receive medical care at academic medical centers with the full scope of interdisciplinary services.…”

“…Once clinicians have reached agreement about which surgical interventions are reasonable to offer a child with trisomy 13 or 18, clinicians must then help families weigh the different options. Data from parents of children with trisomy 13 and 18 reveal that trust in their infant's clinician is essential (Janvier et al, ). This trust and collaboration can be built through open discussion of the child's medical needs and of the family's goals and values for their child (Feudtner, ).…”