Examining emotional and behavioural trajectories in siblings of children with life-limiting conditions.

Background: Healthy siblings of children with life-limiting conditions often experience emotional and behavioural struggles over the course of the ill child's condition(s). Resources to support these siblings are limited due to a lack of understanding about their needs. Therefore, this study was designed to characterize the emotional and behavioural trajectories among siblings of children with progressive, life-limiting genetic, metabolic, or neurological conditions over a 12-month observation period.

Optimising the process for conducting scoping reviews.

Knowledge synthesis constitutes a key part of evidence-based medicine and a scoping review is a type of knowledge synthesis that maps the breadth of literature on a topic. Conducting a scoping review is resource intensive and, as a result, it can be challenging to maintain best practices throughout the process. Much of the current guidance describes a scoping review framework or broad ways to conduct a scoping review.

Charting the Territory: End-of-Life Trajectories for Children With Complex Neurological, Metabolic, and Chromosomal Conditions.

Context: For parents, family, or clinicians of children with rare life-threatening conditions, there is little information regarding likely symptoms, illness trajectory, and end-of-life care.

Objectives: This descriptive analysis of a bereaved cohort recruited in the charting the territory study describes patient characteristics, symptoms, use of medications, discussion of resuscitation orders, and care provided preceding and during the end of life.

Methods: Of the 275 children enrolled in the Charting the Territory study, 54 died between 2009 and 2014.

Scoping review of symptoms in children with rare, progressive, life-threatening disorders.

Background: Q3 conditions are progressive, metabolic, neurological or chromosomal childhood conditions without a cure. Children with these conditions face an unknown lifespan as well as unstable and uncomfortable symptoms. Clinicians and other healthcare professionals are challenged by a lack of evidence for symptom management for these conditions.

A novel classification system for research reporting in rare and progressive genetic conditions.

Aim: To create a classification system for severe, rare, and progressive genetic conditions for use in research reporting.

Method: A modified Delphi consensus technique was used to create and reach agreement on a new system of condition categories. Interrater reliability was tested via two rounds of an online survey whereby physicians classified a subset of conditions using our novel system.

What Would Be Really Helpful but Nobody Ever Tells You: Five Key Recommendations Derived From Lessons Learned During a Qualitative Study in Clinical Settings.

The complexity of qualitative research can lead to a less thorough analysis than would be ideal. Even experienced researchers can become entwined in the myriad of decisions that must be made. Descriptions of qualitative approaches in numerous textbooks and published articles often lack sufficient details to help a researcher surface from the entanglements, especially when conducting studies in clinical settings.

Pain reporting and analgesia management in 270 children with a progressive neurologic, metabolic or chromosomally based condition with impairment of the central nervous system: cross-sectional, baseline results from an observational, longitudinal study.

Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore the differences between parental and clinical pain reporting in children with life-limiting conditions at the time of enrollment into an observational, longitudinal study and to determine if differences in pain experiences were associated with patient- or treatment-related factors. Pain was common, under-recognized and undertreated among the 270 children who enrolled into the "Charting the Territory" study.

Siblings' voices: A prospective investigation of experiences with a dying child.

Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal, qualitative study over 2 years using interpretive descriptive methodology to understand siblings' perspectives when a brother or sister was dying at home or in hospital. The insights from the 10 siblings revealed complex experiences, both personal and with the ill child, their families, and peers.

Siblings of Children With a Complex Chronic Health Condition: Maternal Posttraumatic Growth as a Predictor of Changes in Child Behavior Problems.

Objective: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions.

Methods: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports.

Best Practice in Provider/Parent Interaction.

In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, life-threatening conditions. Analysis of semistructured interviews with 34 parents and 80 health care professionals (HCPs) and 88 observation periods of HCP/parent interactions indicated that BPHCPs shared a broad worldview; values of equity, family-centered care, and integrity; and a commitment to authentic engagement. BPHCPs engaged in direct care activities, in connecting behaviors, and in exquisitely attuning to particularities of the situation in the moment, resulting in positive outcomes for parents and HCPs.

Charting the Territory: Children and families living with progressive life-threatening conditions.

Objectives: To increase awareness of the topic of paediatric palliative care among practicing physicians in Canada by exploring the impact of a child's neurological or rare genetic life-threatening condition on the affected child and his/her parents.

Methods: Cross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, which followed 275 children and 390 parents from 258 families. Parents completed multiple surveys, for themselves and their child.

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

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.

Always with me: understanding experiences of bereaved children whose baby sibling died.

An arts-based qualitative method was used to explore the experiences of children's bereavement after a baby sibling's death, in the context of their family and school life. Data were collected during in-depth interviews with 9 bereaved children and 5 parents from 4 Canadian families and analyzed. A central process, evolving sibling relationship over the years, and a pattern of vulnerability/resilience, ran through all four themes, which reflected ideas of connection, impact of parental grief, disenfranchisement and growth.

Impact of research participation on parents of seriously ill children.

Background: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns about further burdening families. Yet, there is some evidence that research participation can have positive effects for families.

Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions.

Background: Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis, yet, little is known about their patterns of symptoms and functional abilities.

Aim: To describe these children's symptoms, as well as how the children's condition affects them physically.

Posttraumatic growth in parents caring for a child with a life-limiting illness: A structural equation model.

When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into adulthood and beyond. For those parents who have a child who is born with or is later diagnosed with a life-limiting illness, parents also become caregivers in ways that parents of predominantly well children do not.

Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care.

Background And Objective: Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under specific circumstances. However, most of the evidence on FANH involves dying adults. There is a paucity of pediatric evidence to guide health care providers' and parents' decision-making around this practice.

A call to the field: complicated grief in the DSM-5.

While complicated grief has been addressed in part through some recommendations for modifications in the upcoming fifth version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), there remain reasons for substantial concern about its scope therein and within clinical practice. The authors issue a call to the field, reiterating that complicated grief is complicated and cannot be confined to just one syndrome or disorder. Continued research is urged, and specific caveats are identified for exploring the complex dimensions of loss and grief.

Differences on psychosocial outcomes between male and female caregivers of children with life-limiting illnesses.

This secondary analysis of data examined the psychosocial outcomes of meaning in caregiving, self-esteem, optimism, burden, depression, spirituality, and posttraumatic growth in 273 parents caring for children with life-limiting illnesses to (a) determine if there were gender differences and (b) identify gender-specific correlations among these outcomes. Findings suggest that significant gender differences exist. Women reported higher average scores compared with men for meaning in caregiving, depression, burden, and posttraumatic growth and lower average scores for optimism.

Identifying supportive care needs of women with ovarian cancer.

Women diagnosed with ovarian cancer may experience many shortterm and long-term effects from cancer and its treatment. Cancer has more than a physical impact, yet there is a lack of information about the types of needs these women have and whether they want help in meeting their needs. The main purpose of this cross-sectional, descriptive study was to identify the supportive care needs (physical, emotional, social, informational, spiritual, psychological and practical) of women with ovarian cancer who attended a comprehensive, outpatient cancer centre.

Supportive care needs of individuals with lung cancer.

The main purpose of this study was to identify the range of supportive care needs of patients diagnosed with lung cancer who attended an outpatient, regional cancer centre. Lung cancer has more than a physical impact on those who are diagnosed with the disease, yet relatively little has been reported on their needs beyond those for physical symptom management. A total of 88 patients participated in this study by completing a self-report questionnaire.