Research in pediatric oncology: Engaging parents to strengthen research processes, outcomes and knowledge translation.

Childhood cancer is the most common disease-related cause of death in Canadian children aged 0-14 years, with more than 1,000 new diagnoses every year (Canadian Cancer Statistics Advisory Committee, 2019). Treatment for childhood cancers requires complex, intensive, and lengthy regimens, often lasting years. Each new diagnosis marks tremendous upheaval in the lives of the child and their family, and an opportunity for nurses in pediatric oncology to make a difference. However, to best intervene, it is crucial to understand the experiences and needs of parental caregivers who have children in treatment for cancer. Patient Oriented Research is one way to bring together patients, family members, researchers, healthcare providers, and decision-makers to actively collaborate, understand best practices, and create transformational positive change in pediatric oncology.

Developing and pilot-testing a Finding Balance Intervention for older adult bereaved family caregivers: A randomized feasibility trial.

PURPOSE: This study aimed to test the feasibility of a psychosocially supportive writing intervention focused on finding balance for older adult bereaved family caregivers of advanced cancer patients. METHOD: The Finding Balance Intervention (FBI) was tested for feasibility, acceptability and potential influence on increasing hope, coping and balance through a multi-method pilot study employing a randomized trial design with 19 older adults with an average age of 72 years. The intervention group received the FBI and a follow up visit from an RN-RA. The control group received the FBI at a second visit. The FBI, a theory-based intervention was developed from grounded theory qualitative data, applying Delphi methods to design a self-administered, psychosocially supportive, writing intervention for older adults who had lost a spouse after caregiving. RESULTS: Feasibility was assessed and specific modifications identified. The FBI was easy to use, acceptable and of benefit. The FBI offered validation of emotions and ways to discover new ideas to find balance, which may enable bereaved caregivers to move forward on a unique journey through grief. The treatment group showed a statistically significant increase in restoration-oriented coping and higher oscillation activity. CONCLUSIONS: The results suggest the FBI was easy to use, acceptable and of benefit. A full scale study, with specific modifications to the design, is needed to test the effectiveness of this innovative intervention.

Understanding Parental Experiences Through Their Narratives of Restitution, Chaos, and Quest: Improving Care for Families Experiencing Childhood Cancer.

The purpose of this secondary analysis was to develop an enhanced understanding of the experiences of parents who have children in treatment for cancer. Data collected from 16 parents (12 mothers and 4 fathers) were analyzed using Frank's dialogical narrative analysis. Findings demonstrated that parents' experiences were represented in chaos, restitution, and quest narratives. Each of these narratives was only one instance of a very complex and changing parental experience that cannot be understood in isolation from the others. The holistic understanding provided by these findings contributes to a more comprehensive understanding of parental experiences of their child's illness and highlights the need for health professionals to invite conversations about parents' illness experience and attend to the specific narrative type parents are presenting to support them adequately. Additional research is required to develop supportive approaches for each narrative which takes into account the complexities of parents' experiences.

Keeping hope possible: a grounded theory study of the hope experience of parental caregivers who have children in treatment for cancer.

BACKGROUND: Hope has been found to support parents as they care for their child with a life-limiting or life-threatening illness. However, very little research focuses on the nursing care of parents of pediatric oncology patients, and therefore, nurses may have difficulty in understanding and supporting parental well-being. OBJECTIVE: The purpose of this qualitative study was to gain an understanding of the experience of hope for parents who care for their child in treatment for cancer. METHODS: Using purposive theoretical sampling, 16 parents participated in this study. Thirty-three open-ended, face-to-face interviews were conducted, and 14 parent journals were collected. Analysis of the data was conducted using Charmaz's constructivist grounded theory approach. RESULTS: A developing, substantive grounded theory was constructed. Parental hope was described as an essential, powerful, deliberate, life-sustaining, dynamic, cyclical process that was anchored in time; was calming and strengthening; and provided inner guidance through the challenging experience of preparing for the worst and hoping for the best. Parents' main concern was "fearing the loss of hope," which was ameliorated by the basic social process of "keeping hope possible" through accepting reality, establishing control, restructuring hope, and purposive positive thinking. CONCLUSIONS: Parents journeyed through numerous transitions related to the treatment of cancer that caused feelings of uncertainty, anxiety, stress, and loss of control. Hope was identified as vital to parents. IMPLICATIONS FOR PRACTICE: To minimize these adverse experiences, nurses can support parents' ability to keep hope possible and thus to optimize their well-being by understanding, assessing, and supporting parental hope.

Walking a fine line: an exploration of the experience of finding balance for older persons bereaved after caregiving for a spouse with advanced cancer.

PURPOSE OF THE RESEARCH: During the past decade, research regarding cancer patients has become more prevalent, however research regarding the needs of their family caregivers is limited. The purpose of this study was to explore the ways in which caregivers, who survive the loss of their spouse to cancer, find balance in their lives. METHODS AND SAMPLE: A constructivist grounded theory approach was undertaken which included the analysis of in depth interviews, journal entries and the researcher's field notes and memos. Interviews were conducted with 10 bereaved caregivers (7- females, 3-males) ranging in age from 66 to 83 years old. The data included 21 interviews and 8 journals. KEY RESULTS: For bereaved caregivers "walking a fine line" emerged as a major process, balancing between "deep grieving" and "moving forward" in order to successfully create a new life without their partner. The main concern of the participants was "losing control" of balance. The emergence of these processes reveals the importance of addressing the bereaved caregivers' need to find balance within their new lives. CONCLUSIONS: The findings of this study highlight the unique needs of bereaved caregivers who have lost a spouse to cancer, and provides a basis for ongoing research focused on assessment and intervention. Further research is needed to determine whether the process of finding balance is similar in other groups of caregivers who are bereaved.