Utilization of the Keeping Hope Possible Toolkit with parents of children with life limiting and life threatening illnesses during the COVID-19 pandemic: Exploring pediatric nurses and allied healthcare provider opinions.

BACKGROUND: For families with children diagnosed with complex illnesses, the COVID-19 pandemic added many challenges. In order to mitigate inevitable disruptions in pediatric care settings, caregivers may need added supports and resources. The Keeping Hope Possible (KHP) Toolkit is a self-administered intervention intended to enhance caregiving experiences of parents with a child with multiple needs. However, little is known about effectively disseminating the Toolkit. PURPOSE AND METHODS: A qualitative, thematic analysis was conducted to explore the opinions and perceptions of pediatric nurses and allied healthcare providers (HCPs) in relation to the dissemination and use of the KHP Toolkit for use by families with complex medical needs. Structured interview data were analyzed from a sample of seven pediatric HCPs working in various care settings in one Canadian province. FINDINGS: Five themes were developed including: Recognising Importance of the KHP Toolkit; Needing Support and Direction; Implementation and Use of the KHP Toolkit; Realizing Important Considerations for Success; and, Emphasizing Connection through Isolated Times. DISCUSSION: Participants recognized the importance of the KHP Toolkit for parents and extended family in a variety of settings to encourage self-care, daily structure, and connectedness. Thus, pediatric nurses' awareness and openness to the initial dissemination of the Toolkit is essential, and a subsequent interprofessional team approach will ensure consistent reminders and support for families. APPLICATION TO PRACTICE: Careful assessment of family readiness for learning about and using the KHP Toolkit is essential, along with an interprofessional approach to consistent inquiry and support at each family encounter.

"We Eat Without Thinking: We Just Eat, Eat, Eat" - A Thematic Exploration of Cultural Practices of Ethnically Diverse Youth and Their Parents Who Are at Risk for Prediabetes and Type 2 Diabetes.

PURPOSE: Cultural beliefs and practices influence management of type 2 diabetes (T2D) in youth and their parents, and have been minimally explored, limiting our understanding and implementation of preventative healthcare. An enhanced evidence base may inform comprehensive, effective community health nursing (CHN). Thus, the purpose of this research was to explore the influence of youths' and their parents' understandings of cultural practices on risk for prediabetes and T2D. DESIGN: A secondary thematic analysis was conducted. Qualitative data were obtained from semi-structured interviews with 24 participants who were purposefully recruited from two mid-western Canadian high schools. FINDINGS: Three themes and one subtheme were developed including: 1) Food Culture and related subtheme, Acculturation to New Food Choices; 2) Exercise Culture: Adapting Physical Activity in a New Country; and, 3) Risk Perception of the Effects of T2D on Loved Ones: Behavior Modifications and Motivation. Cultural practices and acculturation to food such as dietary choices, preparation, large portions, different dietary staples, food availability, and food gathering patterns influenced health behaviors. Similarly, changes in exercise patterns including adapting to Western video game culture, weather in Canada, and the new way of life emerged as important factors that impacted health. Participants who perceived a familial risk of diabetes identified behavior modifications such as regular diabetes screening, nutrition counseling, healthier food choices, smaller food portions, and an increase in physical activity as strategies to reduce risk of prediabetes and diabetes. CONCLUSIONS: There is a critical need for research aimed at prediabetes and T2D prevention, and intervention programs targeting ethnically diverse groups where prediabetes and T2D is most prevalent. CLINICAL EVIDENCE: Community health nurses are at the core of implementing and supporting disease prevention and, therefore, may consider the findings from this research to develop family-focused, intergenerational, and culturally-based interventions.

Exploring the Use of Arts-Based Interventions and Research Methods in Families of Seriously Ill Children: A Scoping Review.

Family care is essential to pediatric nursing practice, as the entire family is affected by childhood illness. However, little is known about art making for therapeutic purposes and how art is used to better understand families' experiences. Our purpose was to examine the nature of arts-based interventions and research methods used with, and the experiences of families of children facing life-limiting and life-threatening illnesses, and those families who are bereaved. Academic peer-reviewed sources published between January 1999 and May 2022 were retrieved via four databases using key search terms. Twenty-five articles were analyzed, resulting in three multifaceted categories including Social, Emotional, and Family Health. Critical strengths and limitations were also identified. Art making has been incorporated into interventions and research studies due to its benefits for family well-being. Understanding the potential of art making can inspire nurses to implement such activities to enhance family nursing practice and research.

Managing the unmanageable through interdependence in adolescents living with type 1 diabetes and their parents: A constructivist grounded theory.

BACKGROUND: Management of T1D is complex and requires continuous care and monitoring that place many demands on adolescents with T1D and their parents. The purpose of this study was to explore the nature of interdependence with T1D management with adolescents and their parents. METHODS: Using a constructivist grounded theory methodology, 32 open-ended interviews were conducted, transcribed, and analyzed from 11 adolescents aged 10-18 years with T1D and eight parents. FINDINGS: The data were coded using three coding phases: initial, focused, and theroetical and this process continued until theroetical saturation was reached. The substantive theory that emerged from the data describing parents' and adolescents' main concern of Maintaining Optimal Glycemic Control was Managing the Unmanageable through Interdependence. Four related subprocesses were found: Completing T1D Tasks, Attaining Support, Balancing Independence, and Reconciling Reality. These subprocesses occurred within the context of the ever-changing, Nature of the Illness. DISCUSSION: There is a dynamic relationship associated with interdependence between adolescents with T1D and their parents that varied situationally and by age. Participants also indicated interdependence occurs or they would like it to occur, with others beyond themselves and the health-care team to others willing to be involved. APPLICATION TO PRACTICE: Interdependence is a dynamic process and requires ongoing evaluation by health-care professionals of its function in the daily management of T1D by parents and adolescents. Additional research into of the roles of health professionals and others in promoting interdependence is needed.

Using an interprofessional competency framework to enhance collaborative pediatric nursing education and practice.

BACKGROUND: Interprofessional education (IPE) provides healthcare students with the knowledge and skills necessary to provide safe and effective collaborative care in a variety of clinical settings. Inclusion of IPE in nursing curricula is required for program accreditation in Canada; a variety of learning strategies at varied levels are used to meet this requirement. As this formal requirement only occurred over the last decade, development, facilitation, and evaluation of IPE interventions are ongoing. PURPOSE: The purpose of this study was to examine if exposure to an introductory IPE activity influenced third-year undergraduate nursing students' perceived ability to practice competent interprofessional collaboration (IPC). METHODS: The introductory IPE activity included ten-hours of interactive lectures and related case studies, grounded in the National Interprofessional Competency Framework, delivered by various healthcare professionals in a third-year nursing theory and clinical course. Following completion of the courses, quantitative data were collected via the Interprofessional Collaborative Competencies Attainment Survey (ICCAS) which was used to evaluate nursing students' change in competencies for IPC. Frequencies, percentages, and means were used to analyze the demographic data, the Cronbach's alpha coefficient was used to evaluate the internal reliability of the ICCAS, and paired t-tests were conducted to measure the difference from pre- to post-participation for all 20 items and 6 subscales of the ICCAS. RESULTS: Study participants (n = 111) completed the ICCAS at the end of the courses to measure change in six competencies. The survey results indicated improvements in all competencies following the IPE activity. CONCLUSIONS: The significant findings demonstrate that exposure to introductory IPE activities, involving nursing students and other healthcare professionals, hold promise for enhancing IPC in pediatric clinical settings. These findings can be used to inform the development of formal IPE interventions.

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.

A Metasynthesis: Uncovering What Is Known About the Experiences of Families With Children Who Have Life-limiting and Life-threatening Illnesses.

PURPOSE: To conduct a metasynthesis of qualitative research exploring parents' psychosocial experiences during complex and traumatic life transitions related to caring for a child with a life-limiting (LLI) or life-threatening illness (LTI). BACKGROUND: Parents' experiences of caring for a child impacted by an LLI or LTI are not clearly understood, and holistic, comprehensive pediatric nursing care for parents who have children with LLI and LTIs continues to be developed as treatment improves and survival is extended. REVIEW METHODS: Predetermined inclusion and exclusion criteria were used to review qualitative studies. Those included were appraised, classified, and synthesized using systematic procedures guided by Sandelowski and Barroso (2006). DATA SOURCES: A systematic search of qualitative research was conducted by an experienced librarian to identify and retrieve studies from 10 databases. RESULTS: Of the 3515 studies screened, 23 were included. A synthesis of the findings demonstrated that parents experience profound and pervasive uncertainty, leading to their own illness experience being described as a dual reality in which fighting for survival and recognizing the threat of their child's death were daily challenges. Three key processes emerged: the devastation of living with uncertainty, the emergence of hope, and moving forward. CONCLUSION: The integration of findings adds to the current body of knowledge by highlighting the very complex experiences that parents undergo. These findings can support a more comprehensive pediatric nursing plan of care that accounts for the intricacies of the parental experience and the importance of hope.

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.

"Balancing two worlds": a constructivist grounded theory exploring distributed/decentralised nursing education in rural and remote areas in Canada and Norway.

A challenge confronting northern nursing is delivery of equitable and culturally competent nursing education. Advances in technology support distributed approaches for decentralised learning and enhance the feasibility of nursing education in rural and remote regions. However, there is limited scholarship on distributed/decentralised technologies in nursing education, particularly in northern and circumpolar regions. The purpose of this constructivist grounded theory research was to develop an enhanced understanding of the unique experiences of students, faculty and administrators who use distributed/decentralised methods and technology. Open-ended interviews were completed in 2015-17 with nursing students (n = 8), faculty and administrators (n = 6) at two universities using distributed/decentralised educational strategies in northern and circumpolar regions. Interviews, journal entries, field notes and memos, were analysed using grounded theory procedures. Findings indicated that distributed/decentralised programs offered rural and remote students educational possibilities that "fit" which would not have otherwise existed. However, Balancing Two Worlds created a collision of roles resulting in the potential loss of balance. Students rectified the Fear of "Falling Off" of their program through four subprocesses: Being Disciplined, Having Realistic Expectations, Planning Ahead and Staying Motivated which provided structure and predictability. Findings support the development of empirical knowledge regarding distributed/decentralised technologies in nursing education and a foundation for future research.

Keeping Hope Possible Toolkit: The Development and Evaluation of a Psychosocial Intervention for Parents of Infants, Children and Adolescents with Life Limiting and Life Threatening Illnesses.

BACKGROUND: Globally, many infants and children are diagnosed with illnesses that impose limitations on their well-being and life course trajectory. Children's care becomes the central focus of family life. Inadequate support for parents is detrimental to their well-being and management of their child's care and support needs. METHODS: The second phase of this evaluation study followed a quasi-experimental crossover design to test a theory-based psychosocial intervention, the Keeping Hope Possible Toolkit. Fifty-nine participants were randomly assigned to one of two sequence groups, with measures of hope, feelings of control, distress, and uncertainty completed pre- and post-intervention, and at a three-month follow-up. Qualitative interviews sought to assess participant experiences with the intervention, along with acceptability and feasibility. RESULTS: Significant influence on parental distress was found, and the qualitative findings reveal benefits of the intervention for parental wellbeing. The intervention effectively offered practical and emotional support to diverse family caregivers. CONCLUSIONS: The evidence-informed KHP intervention can be used by healthcare providers to intervene with family caregivers to support their dynamic emotions including hope, need to live in the moment and remember self, and social preferences. In doing so, parents' critical caregiving activities can be sustained and their child's health and wellbeing optimized.

Supporting parental caregivers of children living with life-threatening or life-limiting illnesses: A Delphi study.

BACKGROUND: The impact of a child s life-limiting or life-threatening illness is significant on parents who experience a great deal of emotional, physical, and spiritual upheaval. Hope has been identified as an important inner resource for parental caregivers. Specifically, parental hope has been described as having four subproceses including Accepting Reality, Establishing Control, Restructuring Hope, and Purposive Positive Thinking. PURPOSE: The purpose of this Delphi study was to gather expert opinions from parents and formal care providers about the four subproceses essential to parental hope, to increase understanding of parental caregivers current support needs. As Phase one of a three-phase study, the findings provided direction in the development of a theory-based hope intervention. DESIGN AND METHODS: A Delphi study consisting of three rounds of survey questions and controlled feedback to experts was employed. Experts suggested strategies for each subprocess and ranked them in order of highest to lowest according to feasibility and effectiveness. RESULTS: Sixty-eight experts consisting of parental caregivers of children diagnosed with life-limiting or life-threatening illnesses and those who care for them (community members, nurses, social workers, and physicians) were recruited to participate. Through three rounds of survey questions, response rates ranged from 92-97%. A consensus revealed eight major themes that support parental hope: Organize Basic Needs; Connect with Others; Prioritize Self-care; Obtain Meaningful Information; Take Things Day by Day; Advocate for Parental Participation; Manifest Positivity; and Celebrate Milestones. PRACTICE IMPLICATIONS: This study identified a wide variety of psychosocial needs for parental caregivers. Results also offered direction for a theory-based hope intervention while highlighting the need for additional research in this area. These results will provide the foundation for a booklet parents can work through in their journey of caring for a child with a life-limiting or life-threatening illness.

The role of nursing leadership in creating a mentoring culture in acute care environments.

High rates of retirement among older nurses and horizontal violence among younger nurses heighten the importance of mentoring in the context of overall organizational stability and performance. Viewing the essentials of mentoring in the context of organizational culture and leadership as a long-term commitment and solution rather than a short-term task will lead to improved staff retention, satisfaction, and, ultimately, patient outcomes. Using Bass's four leadership initiatives, a culture for mentoring can be achieved through inspirational motivation, individualized consideration, idealized influence, and intellectual stimulation. Alignment of organizational and mentoring goals is essential to a successful approach given that the qualities associated with leadership and mentorship are closely aligned. Mentoring cultures also depend upon elements of a stable infrastructure such as managerial and executive support, scheduling flexibility, incentives, and recognition. Transformational leadership practices are key to achieving the sustainable effects of mentoring programs that are rooted deeply in organizational culture.

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.

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.

Viewing the art and the science of pediatric nursing through the lens of paradigms: the impact on hope for the future.

PURPOSE: The purpose of this study was to examine the strengths and limitations of common research paradigms used in the study of the hope of parents who have children with a variety of illnesses. CONCLUSIONS: Research findings on parental hope extracted from only one paradigm present limitations to related knowledge development. To take into account the contributions from each paradigm and to allow for a multidimensional understanding of parental hope, a multiparadigmatic approach is needed. PRACTICE IMPLICATIONS: The complementary findings from multiple research paradigms can lead to a comprehensive base of knowledge that can guide future research and develop effective, family-centered pediatric nursing care.

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.