Designing and Implementing a Longitudinal Study of Children with Neurological, Genetic, or Metabolic Conditions: \u3cem\u3eCharting the Territory\u3c/em\u3e

Background: Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the condition progresses along an uncertain trajectory towards death. Much is known about the genetics and pathophysiology of these diseases, but very little has been documented about the trajectory of symptoms for children with these conditions or the associated experience of their families. A longitudinal study design will help to close this gap in knowledge. Methods/Design: Charting the Territory is a longitudinal descriptive, correlational study currently underway with children 0–19 years who are diagnosed with progressive neurological, metabolic, or chromosomal conditions and their families. The purpose of the study is to determine and document the clinical progression of the condition and the associated bio psychosocial spiritual experiences of these parents and siblings age 7–18 years. Approximately 300 families, both newly diagnosed children and those with established conditions, are being recruited in six Canadian cities. Children and their families are being followed for a minimum of 18 months, depending on when they enroll in the study. Family data collection will continue after the child’s death if the child dies during the study period. Data collection includes monthly parental assessment of the child’s symptoms; an annual functional assessment of the child; and completion of established instruments every 6 months by parents to assess family functioning, marital satisfaction, health status, anxiety, depression, stress, burden, grief, spirituality, and growth, and by siblings to assess coping and health. Impact of participation on parents is assessed after 1 year and at the end of the study. Chart reviews are conducted at enrollment and at the conclusion of the study or at the time of the child’s death. Discussion: Knowledge developed from this study will provide some of the first ever detailed descriptions of the clinical symptom trajectory of these non-curable progressive conditions and the bio-psychosocial spiritual aspects for families, from diagnosis through bereavement. Information about developing and implementing this study may be useful to other researchers who are interested in designing a longitudinal study

Protocol: Evaluating the impact of a nation-wide train-the-trainer educational initiative to enhance the quality of palliative care for children with cancer

Background: There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC (R)-Pediatrics), using a 'Train-the-Trainer' model.Methods/design: In this study we are using a pre-post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC (R)-Pediatrics, 'Master Facilitators' will train 'Regional Teams' affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC (R)-Pediatrics curriculum to 'End-Users' in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams.Discussion: Through this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of the impact of EPEC (R)-Pediatrics both on dissemination outcomes and on care quality at a national level. Based on the anticipated success of our project we hope to expand the EPEC (R)-Pediatrics roll-out to health professionals who care for children with non-oncological life-threatening conditions

Transition from children's to adult services for adolescents/young adults with life-limiting conditions : developing realist programme theory through an international comparison

Abstract Background Managing transition of adolescents/young adults with life-limiting conditions from children’s to adult services has become a global health and social care issue. Suboptimal transitions from children’s to adult services can lead to measurable adverse outcomes. Interventions are emerging but there is little theory to guide service developments aimed at improving transition. The Transition to Adult Services for Young Adults with Life-limiting conditions (TAYSL study) included development of the TASYL Transition Theory, which describes eight interventions which can help prepare services and adolescents/young adults with life-limiting conditions for a successful transition. We aimed to assess the usefulness of the TASYL Transition Theory in a Canadian context to identify interventions, mechanisms and contextual factors associated with a successful transition from children’s to adult services for adolescents/young adults; and to discover new theoretical elements that might modify the TASYL Theory. Methods A cross-sectional survey focused on organisational approaches to transition was distributed to three organisations providing services to adolescents with life-limiting conditions in Toronto, Canada. This data was mapped to the TASYL Transition Theory to identify corresponding and new theoretical elements. Results Invitations were sent to 411 potentially eligible health care professionals with 56 responses from across the three participating sites. The results validated three of the eight interventions: early start to the transition process; developing adolescent/young adult autonomy; and the role of parents/carers; with partial support for the remaining five. One new intervention was identified: effective communication between healthcare professionals and the adolescent/young adult and their parents/carers. There was also support for contextual factors including those related to staff knowledge and attitudes, and a lack of time to provide transition services centred on the adolescent/young adult. Some mechanisms were supported, including the adolescent/young adult gaining confidence in relationships with service providers and in decision-making. Conclusions The Transition Theory travelled well between Ireland and Toronto, indicating its potential to guide both service development and research in different contexts. Future research could include studies with adult service providers; qualitative work to further explicate mechanisms and contextual factors; and use the theory prospectively to develop and test new or modified interventions to improve transition

Development and Testing of an Instrument to Measure the Quality of Children’s End-of-life Care from the Parents’ Perspective

Background: The Senate of Canada asserts that quality end-of-life care is the right of every Canadian. Yet, little is known about the quality of end-of-life care for dying children and their families. Purpose: The study purpose was to develop and test an instrument to measure parents’ perspectives on the quality of care provided to families before, at the time of, and following the death of a child. Methods: In study Phase I, key components of quality pediatric end-of-life care were synthesized through a systematic review of research literature then validated and extended through focus groups with bereaved parents. In Phase II, instrument items were developed to assess structures, processes, and outcomes important to quality end-of-life care, then tested for content and face validity by health professionals and bereaved parents. In Phase III, the instrument was administered to bereaved mothers from across Canada and psychometric testing conducted. Results: Instrument items were developed based on review of 67 manuscripts and 3 focus groups with 10 parents. The Content Validity Index for the instrument was 0.84 as assessed by 7 health professionals. The instrument was assessed by 6 bereaved parents for face and content validity as well as their cognitive understanding of the items. In the final phase, 128 mothers completed the instrument and 31 of those completed it twice. Initial evidence for test-retest reliability, internal consistency, and construct validity was demonstrated for 7 subscales: Connect with Families, Involve Parents, Share Information with Parents, Share Information among Health Professionals, Support Parents, Provide Care at Death, and Provide Bereavement Follow-up. Additional items with demonstrated content validity only were grouped into three domains: Support the Child, Support Siblings, and Structures of Care. Implications: This study is a significant step forward in comprehensive measurement of the quality of children’s end-of-life care. The instrument provides a mechanism for feedback to health professionals, health systems, and policy makers to improve care provided to families facing the death of a child.Ph

Mentorer les infirmières en pratique avancée dans le domaine de la recherche : recommandations issues d’un programme pilote

Les infirmières en pratique avancée (IPA) doivent posséder des compétences en recherche afin de bien développer et faire progresser leur pratique, mais beaucoup d’entre elles ont un accès limité à la formation et au soutien en matière de recherche une fois qu’elles ont obtenu leur diplôme de cycle supérieur. Dans le présent article, nous examinons le développement, la mise en place et l’évaluation d’un programme pilote novateur combinant la formation en recherche et le mentorat individuel à l’intention de neuf IPA dans la réalisation de recherches pertinentes pour leur pratique. Le programme a été mis sur pied au sein d’un établissement universitaire et de ses hôpitaux affiliés à Toronto, Canada. L’expérience acquise dans le cadre de ce programme pourrait aider les intervenants d’autres organisations à planifier et à implanter un programme similaire pour le mentorat en recherche destiné aux IPA

Factor structure of the Quality of Children’s Palliative Care Instrument (QCPCI) when completed by parents of children with cancer

Abstract Background Currently available indicators of quality pediatric palliative care tend to focus on care provided during the end-of-life period rather than care provided throughout the disease trajectory. We adapted a previously developed instrument focused on mothers’ perspectives on the quality of end-of-life care and assessed its psychometric properties with mothers and fathers of children with cancer at any stage of the illness. Methods Four subscales were included in the analysis: Connect with Families, Involve Parents, Share Information Among Health Professionals, Support Siblings. The number of items across the four subscales was reduced from 31 to 15. We conducted confirmatory factor analysis, composite reliability, internal consistency, and tests of correlation between the overall scale and subscale totals and a separate question inquiring about overall quality of care. Measurement invariance between mothers and fathers was assessed. Results A total of 533 mothers and fathers completed the survey. The four-factor model was confirmed and there were significant correlations between each subscale score and responses to the overall item on care quality. Cronbach’s alpha was adequate for the scale as a whole and for each subscale ranging from 0.78 to 0.90. We also found the factor structure, means, and intercepts were similar across mothers and fathers, suggesting the tool can be used by both groups. Conclusions There is evidence for a four-factor structure within a new Quality of Children’s Palliative Care Instrument (QCPCI) with demonstrated reliability when used with mothers and fathers of children with cancer. Ongoing assessment of the psychometric properties is needed, including testing in additional populations. However, our initial findings suggest that the QCPCI may be a helpful tool for assessing the quality of palliative care for pediatric patients anywhere along the disease trajectory from the perspective of parents

Mentoring advanced practice nurses in research: Recommendations from a pilot program

Advanced Practice Nurses (APNs) need research skills to develop and advance their practice and, yet, many have limited access to research training and support following completion of their advanced degree. In this paper we report on the development, delivery, and evaluation of an innovative pilot program that combined research training and one-to-one mentorship for nine APNs in conducting research relevant to their practice. The program was organized within an academic institution and its affiliated hospitals in Toronto, Canada. Our experience with this program may assist those in other organizations to plan and deliver a similar program for APN research mentorship

What is known about paediatric nurse burnout: a scoping review

Abstract Burnout in healthcare providers has impacts at the level of the individual provider, patient, and organization. While there is a substantial body of literature on burnout in healthcare providers, burnout in pediatric nurses has received less attention. This subpopulation may be unique from adult care nurses because of the specialized nature of providing care to children who are typically seen as a vulnerable population, the high potential for empathetic engagement, and the inherent complexities in the relationships with families. Thus, the aim of this scoping review was to investigate, among pediatric nurses, (i) the prevalence and/or degree of burnout, (ii) the factors related to burnout, (iii) the outcomes of burnout, and (iv) the interventions that have been applied to prevent and/or mitigate burnout. This scoping review was performed according to the PRISMA Guidelines Scoping Review Extension. CINAHL, EMBASE, MEDLINE, PsycINFO, ASSIA, and The Cochrane Library were searched on 3 November 2018 to identify relevant quantitative, qualitative, and mixed-method studies on pediatric nurse burnout. Our search identified 78 studies for inclusion in the analysis. Across the included studies, burnout was prevalent in pediatric nurses. A number of factors were identified as impacting burnout including nurse demographics, work environment, and work attitudes. Similarly, a number of outcomes of burnout were identified including nurse retention, nurse well-being, patient safety, and patient-family satisfaction. Unfortunately, there was little evidence of effective interventions to address pediatric nurse burnout. Given the prevalence and impact of burnout on a variety of important outcomes, it is imperative that nursing schools, nursing management, healthcare organizations, and nursing professional associations work to develop and test the interventions to address key attitudinal and environmental factors that are most relevant to pediatric nurses

Initial development and psychometric testing of an instrument to measure the quality of children’s end-of-life care

Abstract Background The field of pediatric palliative care is hindered by the lack of a well-defined, reliable, and valid method for measuring the quality of end-of-life care. Methods The study purpose was to develop and test an instrument to measure mothers’ perspectives on the quality of care received before, at the time of, and following a child’s death. In Phase 1, key components of quality end-of-life care for children were synthesized through a comprehensive review of research literature. These key components were validated in Phase 2 and then extended through focus groups with bereaved parents. In Phase 3, items were developed to assess structures, processes, and outcomes of quality end-of-life care then tested for content and face validity with health professionals. Cognitive testing was conducted through interviews with bereaved parents. In Phase 4, bereaved mothers were recruited through 10 children’s hospitals/hospices in Canada to complete the instrument, and psychometric testing was conducted. Results Following review of 67 manuscripts and 3 focus groups with 10 parents, 141 items were initially developed. The overall content validity index for these items was 0.84 as rated by 7 health professionals. Based on feedback from health professionals and cognitive testing with 6 parents, a 144-item instrument was finalized for further testing. In Phase 4, 128 mothers completed the instrument, 31 of whom completed it twice. Test-retest reliability, internal consistency, and construct validity were demonstrated for six subscales: Connect With Families, Involve Parents, Share Information With Parents, Share Information Among Health Professionals, Support Parents, and Provide Care at Death. Additional items with content validity were grouped in four domains: Support the Child, Support Siblings, Provide Bereavement Follow-up, and Structures of Care. Forty-eight items were deleted through psychometric testing, leaving a 95-item instrument. Conclusions There is good initial evidence for the reliability and validity of this new quality of end-of-life care instrument as a mechanism for evaluative feedback to health professionals, health systems, and policy makers to improve children’s end-of-life care

Indicators Used to Assess the Impact of Specialized Pediatric Palliative Care: A Scoping Review

BACKGROUND Specialized pediatric palliative care programs aim to improve quality of life and ease distress of patients and their families across the illness trajectory. These programs require further development, which should be based on how they improve outcomes for patients, families, health care professionals, and the health care system. OBJECTIVE To identify and compare definitions of indicators used to assess the impact of specialized pediatric palliative care programs. DESIGN The scoping review protocol was prospectively registered on PROSPERO 2017 (CRD42017074090). DATE SOURCES MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase databases were searched from January 2000 to September 2018. Eligible studies included randomized controlled trials, experimental studies, or observational studies that compared specialized programs with usual care. Studies were excluded if most care recipients were older than 19 years or the article was not available in English, French, German, or Spanish. RESULTS Forty-six studies were included; one was a randomized controlled trial. We identified 82 different indicators grouped into 14 domains. The most common indicators included the following: location of death, length of stay in hospital, and number of hospital admissions. Only 22 indicators were defined identically in at least 2 studies. Only one study included children's perspectives in assessing indicators. CONCLUSIONS Many indicators were used to assess program outcomes with little definition consensus across studies. Development of a set of agreed-upon indicators to assess program impact concurrent with family and patient input is essential to advance research and practice in pediatric palliative care