Katherine Patterson Kelly

Advancing nursing practice to improve care and system outcomes requires doctoral-prepared nurses to conduct programs of research and translate science to practice. The authors describe a Doctoral support group (DSG) at one hospital designed to support nurses considering and navigating doctoral education while continuing as hospital employees. Strategies from 18 years' experience are provided for others to develop and sustain a DSG as part of an environment to support and retain nurses with doctoral degrees.

Parenting a seriously ill child is complex and emotionally intense. To further develop Hinds and colleagues’ Good Parent themes: “Keeping a Positive Outlook” and “Keeping a Realistic Outlook,” we reviewed grounded theories published in English language journals from January 2006 to April 2021 identifying 18 studies with relevant results. Parents’ efforts to keep a positive outlook included cognitive (e.g., remain hopeful, avoid negative thinking) and behavioral (e.g., monitoring child for signs of improvement, information seeking) actions. To keep a realistic outlook, parents acknowledged the serious nature of the condition, negative treatment effects, and limitations to treating the child normally. Parents holding both positive and realistic outlooks recognized the seriousness of their child’s illness and remained hopeful while preparing for their child’s death. Our analysis extends the understanding of how parents’ expectations regarding the course and outcome of their child’s illness shape cognitive and behavioral aspects of their parenting.

Background: Transition to adult healthcare is a critical time for adolescents and young adults (AYAs) with sickle cell disease, and preparation for transition is important to reducing morbidity and mortality risks associated with transition. Objective: We explored the relationships between decision-making involvement, self-efficacy, healthcare responsibility, and overall transition readiness in AYAs with sickle cell disease prior to transition. Methods: This cross-sectional, correlational study was conducted with 50 family caregivers–AYAs dyads receiving care from a large comprehensive sickle cell clinic between October 2019 and February 2020. Participants completed the Decision-Making Involvement Scale, the Sickle Cell Self-Efficacy Scale, and the Readiness to Transition Questionnaire. Multiple linear regression was used to assess the relationships between decision-making involvement, self-efficacy, healthcare responsibility, and overall transition readiness in AYAs with sickle cell disease prior to transition to adult healthcare. Results: Whereas higher levels of expressive behaviors, such as sharing opinions and ideas in decision-making, were associated with higher levels of AYA healthcare responsibility, those behaviors were inversely associated with feelings of overall transition readiness. Self-efficacy was positively associated with overall transition readiness but inversely related to AYA healthcare responsibility. Parent involvement was negatively associated with AYA healthcare responsibility and overall transition readiness. Discussion: While increasing AYAs’ decision-making involvement may improve AYAs’ healthcare responsibility, it may not reduce barriers of feeling unprepared for the transition to adult healthcare. Facilitating active AYA involvement in decision-making regarding disease management, increasing self-efficacy, and safely reducing parent involvement may positively influence their confidence and capacity for self-management.

We developed and applied metasynthesis methods to expand previously reported thematic descriptions of parents’ internal definition of “being a good parent to my seriously ill child” as part of a larger study to examine parenting of children with serious illness. Our systematic approach included: literature search, purposeful selection of grounded theories regarding parenting a seriously ill child, study summaries, mapping evidence of good parent themes onto structural elements of grounded theory, cross-study comparisons, and theoretical memoing to summarize analytic insights. Twenty-five grounded theory studies from 32 reviewed reports reflected multiple conditions (n=5), countries (n=10) and family members (n=386 families). We report a worked example of the processes used to extend the original good parent themes and detail our processes through one good parent theme. The methods we describe are a promising approach to extend thematic analysis findings and advance thematic expansions toward development of more formal theoretical syntheses.

Background Professional organizations and governments recommend child and adolescent involvement in cancer treatment decision making (TDM) despite minimal evidence that children prefer involvement, how best to include them, and the result of doing so. Procedure Using descriptive qualitative research methods, we interviewed 20 children ages 9–17 years about their TDM preferences and experiences. We shifted our conceptualizations as findings emerged about how children with cancer viewed their decisional experiences. Results from constant comparative analysis of participant interviews yielded a new construct, “Having a say, as I need at this time” (‘Having a Say’), which focuses more broadly on child communication preferences and the dynamism of those preferences. Ten additional interviews confirmed ‘Having a Say’ results. Results Children's contextually related ‘Having a Say’ preferences ranged from not wanting to hear information at this time, to being included in treatment discussions, to choosing a treatment option. Children reported both positive and negative effects of being involved (or not) in treatment discussions as they preferred. Children's preferences assumed the presence and involvement of their parents and doctors. Illness conditions (e.g., stage of treatment; symptom distress) informed child communication preferences more so than the child's age. Conclusions The ‘Having a Say’ construct challenges the dominant shared TDM paradigm, which presumes it is best to involve children in their treatment decisions. ‘Having a Say’ is both a developmental and conceptual fit for children that can inform future research to develop and test clinical care approaches to meet child and adolescent communication needs.