Care Provider Behaviors That Shape Parent Identity as a “Good Parent” to Their Seriously Ill Child

Abstract

Background: Parents of medically complex children hold deeply personal definitions of how to be ''good parents'' that guide their medical decision making and interactions with providers and are impacted by provider behaviors.Objective: This study explored whether and how these beliefs are shaped by interactions with care providers and which provider behaviors foster or impede parents' ability to achieve their ''good parent'' definitions. Methods: A 63-item web-based survey distributed by an online support network for parents of medically complex children. Responses to closed-and open-ended questions from 67 caregivers based in the United States and Europe were analyzed. Results: Respondents' medical decisions are driven by goals of unselfishly doing what is best for my child (61%) and being my child's voice (18%). Almost half indicated that their personal ''good parent'' definition was impacted by provider behaviors or interactions with physicians or nurses. Although most parents reported wanting trusted care providers to ask them about their personal ''good parent'' definition, only 7% had ever been directly asked by members of their care teams about this topic. Provider behaviors such as kind and caring interactions, acknowledging the parents' role in caring for the child, and truly seeing the child as more than a diagnosis were reported as fostering caregivers' ability to achieve their ''good parent'' beliefs. Conclusions:The findings indicate that trusted provider-initiated conversations about ''good parent'' beliefs would be well received and are an opportunity to improve family-centered care. Care provider behaviors deemed by parents as supportive facilitate their efforts to achieve their ''good parent'' beliefs.

It’s about living a normal life: parents’ quality of life when their child has a life-threatening or life-limiting condition - a qualitative study

“…This involves acknowledging the importance parents place on their role and tailoring care plans to align with the values and beliefs of each family. However, HCPs should also be careful not to contribute to unrealistically high expectations on parents, as research has shown that interactions with HCPs impact parents’ definitions of what a good parent is [ 49 ].…”

Experiences of medical traumatic stress in parents of children with medical complexity

“…Alternatively, parents could be overwhelmed with responsibility when compelled to perform tasks with which they are not comfortable. Both circumstances threaten the parent's own conceptualization of what it means to be a “good parent,” their own personal framework of beliefs that guide their coping and decision‐making, which often includes elements such as keeping their child safe, preventing pain, and advocating effectively (Hinds et al, 2009 ; Neumann et al, 2021 ; Weaver et al, 2020 ).…”

Childhood functional constipation : Parents' everyday life experiences

“…The definition of good parent beliefs includes making informed unselfish decisions in the best interest of the child; providing the basics of food, shelter and clothing; remaining at the child's side; showing the child that it is cherished; trying to prevent suffering and protect health; teaching the child to make good choices; advocating for the child with the staff; and promoting the child's health (Hinds et al, 2009;Weaver, October, Feudtner & Hinds, 2020). Beliefs serve as an identity to parents, forming an ideal and an internal compass that guides medical decisions concerning their child (Neumann, Weaver, Lord, Wiener, & Hinds, 2021). Parents differ and construct their own understanding of what being a good parent implies (Weaver et al, 2020) Moreover, parental beliefs are personal and may shift or develop over time, influenced by parent-clinician interactions (Weaver, Hinds, Kellas, & Hecht, 2021).…”