Abstract
Background: Parents of children with complex medical needs describe an internal, personal definition of “trying to be a good parent” for their loved child. Gaps exist in the current “good parent concept” literature: (1) When the idea of “trying to be a good parent” comes into existence for parents, (2) How parents’ definition of “being a good parent” may change over time and may influence interactions with the child, and (3) Whether parents perceive attainment of their personal definition. Aim: The purpose of this study was to explore these current gaps in the “good parent concept” knowledge base from the perspective of parents of children with chronic or complex illness. Materials and Methods: These themes were explored through a 63-item, mixed-method web-based survey distributed by the Courageous Parents Network (CPN), an organization and online platform that orients, educates, and empowers families and providers caring for seriously ill children. Results: The term “trying to be a good parent” resonated with 85% of the 67 responding parents. For the majority of parents, the concept of “being a good parent” started to exist in parental awareness before the child’s birth (70.2%) and evolved over time (67.5%) to include less judgment and more self-compassion. Parents identified their awareness of their child’s prognosis and changing health as influential on their “trying to be a good parent” concept. Parental advocacy, child’s age, and duration of illness were reported as influencing parental perceptions of having achieved their definition of “being a good parent”. Conclusions: Familiarity with parental perspectives on their parenting goodness and goals is a necessary core of family-centric health care.
Highlights
Parents hold an internal definition of “being a good parent” for a child with a medical illness, and this unique definition influences parental identity, decision-making, and relational congruence with the child [1,2]
Since publication of the original “good parent concept” qualitative paper over a decade ago, care teams have partnered with parents of pediatric patients across settings to further explore the meaning and impact of this guiding “trying to be a good parent” concept [4]
Survey development included interviews with 10 bereaved parents and 10 parents of children living with chronic, complex, or critical illnesses to review questions developed by the study team with >30 cumulative years of experience in pediatric palliative care
Summary
Parents hold an internal definition of “being a good parent” for a child with a medical illness, and this unique definition influences parental identity, decision-making, and relational congruence with the child [1,2]. In 2009, Hinds et al established the good parent definition among 62 parents of children with cancer who engaged in one of three difficult decisions (enrollment in a phase I study, do not resuscitate status, or terminal care) in recent days [7]. In 2010, Maurer and colleagues identified that the elements of the good parent definition differ in frequency between parents of children with cancer who chose to enroll their child in a Phase I clinical trial and parents who instead chose a do not resuscitate decision [10] The former group was more likely to cite medical facts and the need to prolong life, while the latter group was more likely to emphasize overall quality of life for the ill child and honoring the ill child’s wishes [10]. (2) How parents’ definition of “being a good parent” may change over time and may influence interactions with the child, and (3) Whether parents perceive attainment of their personal definition
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