The death of a child by any cause places parents at risk of depression, anxiety, an inability to return to the work setting and an earlier death as compared to parents who do not experience the death of a child. Thus, a child's death places the health and functional status of parents and, thereby a family, at heightened risk; strategies to reduce these serious risks are needed. In our end-of-life studies about treatment decision making and symptom management, we discovered that parents strive to achieve their internal definition of 'being a good parent to my seriously ill child'. Achieving this definition could be a protective factor for parent health and functioning and family well-being in the context of a child's death. In our work to date, we have been able to generate and validate the definition of 'being a good parent to my seriously ill child' in two parent groups (parents of a child with incurable cancer, parents of a child in the pediatric intensive care setting) who were involved in treatment decision-making on behalf of their very ill child, but we do not yet know the internal and external factors that influence the parents' ability to achieve their definition nor the exten to which this achievement is protective in terms of parent health and family well-being outcomes. In this study we will use a grounded theory approach to synthesize qualitative and quantitative evidence into a theoretical framework that explains influencing factors and outcomes of achieving one's definition of being a good parent.
Our first Aim i s to generate two substantive grounded theories, based on qualitative interviews, standardized questionnaires, field notes and theoretical memoing collected longitudinally (from the time of an end-of-life decision until 4 to 6 months after the child's death) from two purposefully sampled groups of parents (parents whose child's cancer becomes incurable; parents of a child who experienced an unexpected accidental and life-threatening trauma). We project enrolling up to 40 families (one or both parents, thus up to 80 parents) in each of the two groups. For our second Aim, we will use metasynthesis strategies to develop an integrated formal grounded theory from the two substantive theories and other evidence sources (e.g., literature review) that is broadly applicable to other parent populations. The resulting theoretical framework will subsequently be used as the basis of a hospital-based, clinician-initiated intervention designed to reduce the risks to parent health and family well-being secondary to the loss of a child family member.
Parents who make end-of-life decisions on behalf of their gravely ill child are at high risk for bad health outcomes secondary to the loss of their child. Clinicians who take care of the ill child are able to help parents better survive the loss of their child by learning and then supporting the parents' internal definition of 'being a good parent to my seriously ill child.
| Madrigal, Vanessa N; Kelly, Katherine Patterson (2018) Supporting Family Decision-making for a Child Who Is Seriously Ill: Creating Synchrony and Connection. Pediatrics 142:S170-S177 |
