A qualitative account of mothers of pediatric heart transplant recipients' experience at a pilot mindfulness-based retreat: insights for implementation.

Objective: To explore participants' shared experience attending a pilot mindfulness-based retreat (MBR) intervention supporting the psychological well-being of mothers of pediatric heart transplant (HTx) recipients.

Methods: A qualitative description approach was used within a larger hybrid mixed-methods pilot study evaluating the implementation-effectiveness of a 2-day MBR tailored specifically for a pediatric HTx population. A purposive sample of mothers was recruited from a leading Canadian pediatric HTx center, and each represented a primary, female-identifying caregiver, sharing residence with a pediatric HTx recipient of at least 4 months post-transplant.

User-Centered Design and Usability of Voxe as a Pediatric Electronic Patient-Reported Outcome Measure Platform: Mixed Methods Evaluation Study.

Background: Electronic patient-reported outcome measures (ePROMs) are standardized digital instruments integrated into clinical care to collect subjective data regarding patients' health-related quality of life, functional status, and symptoms. In documenting patient-reported progress, ePROMs can guide treatment decisions and encourage measurement-based care practices. Voxe is a pediatric and user-centered ePROM platform for patients with chronic health conditions.

The iPeer2Peer mentorship program for adolescent thoracic transplant recipients: An implementation-effectiveness evaluation.

Background: An increase in self-management skills for adolescent thoracic transplant recipients may improve health outcomes and facilitate a successful transition to adulthood. The iPeer2Peer program is an online peer mentorship program that has been successfully implemented as a self-management intervention in multiple chronic disease populations. This study aimed to determine the implementation and effectiveness outcomes of the iPeer2Peer program for adolescent thoracic transplant recipients.

Access to and Health Outcomes of Pediatric Solid Organ Transplantation for Indigenous Children in 4 Settler-colonial Countries: A Scoping Review.

Solid organ transplantation (SOT) is considered the optimal treatment for children with end-stage organ failure; however, increased efforts are needed to understand the gap surrounding equitable access to and health outcomes of SOT for Indigenous children. This scoping review summarizes the literature on the characteristics of access to and health outcomes of pediatric SOT among Indigenous children in the settler-colonial states of Canada, Aotearoa New Zealand, Australia, and the United States. A search was performed on MEDLINE, EMBASE, PsycINFO, and CINAHL for studies matching preestablished eligibility criteria from inception to November 2021.

"Weighing the Pros and Cons of Everything": A Qualitative Descriptive Study Exploring Perspectives About Living Donor Kidney Transplantation From Parents of Chinese Canadian Pediatric Patients With Chronic Kidney Disease.

Background: As of 2021, more than 6000 children and youth in Canada were living with end-stage kidney disease (ESKD), for which kidney transplantation is considered the preferred treatment by health professionals. Research shows that living donor kidney transplantation (LDKT) has superior allograft and recipient survival compared to deceased donor kidney transplantation (DDKT). However, in a pediatric setting, the choice of LDKT or DDKT is a summative consideration of factors weighed carefully by the patient's family, health care team, and patient.

Patient-reported outcome measures in pediatric solid organ transplantation: Exploring stakeholder perspectives on clinical implementation through qualitative description.

Purpose: Patient-reported outcome measures (PROMs) are standardized instruments used to collect data about the subjective assessment of medical care from the patient perspective. Implementing PROMs within pediatric clinical settings has gained increasing importance as health services prioritize patient-centred pediatric care. This study explores the perspectives of pediatric solid organ transplant patients, caregivers, and healthcare practitioners (HCPs) on implementing PROMs into clinical practice.

The social impact of early psychological maturity in adolescents with cancer.

Objective: There is a growing need to assess the long-term quality of life (QOL) of pediatric oncology patients since many children now survive their disease. This paper highlights the subjective perspectives of pediatric cancer patients and specifically explores how experiencing cancer at a young age impacts adolescents in the areas of social functioning, peer relationships, and QOL. The findings emerged from a qualitative research study that explored how pediatric oncology patients ascribe meaning to their illness.

Experiences with unregulated respite care among family caregivers of children dependent on respiratory technologies.

Increasingly, children with respiratory conditions who are dependent on medical technology (e.g. ventilators and tracheostomies) are cared for at home by family caregivers who are at risk for significant health, financial and social burdens.

Quality of life of pediatric oncology patients: Do patient-reported outcome instruments measure what matters to patients?

Purpose: The assessment of quality of life (QOL) is key within pediatric oncology and requires a clearly defined construct of QOL. The purpose of our study was: (1) to conduct a qualitative study to inform the theoretical underpinnings of QOL and (2) to determine the appropriateness of patient-reported outcome (PRO) instruments to assess and evaluate QOL in pediatric cancer patients and survivors.

Methods: The study used an interpretative description approach.

The Coconstruction of Couples' Roles in Parenting Children With a Chronic Health Condition.

In this study we explored the ways that mothers and fathers of children who have a chronic health condition coconstructed their parenting roles. We wanted to move beyond the standard focus on individual parenting behaviors and use a grounded theory approach to better capture the dyadic and interpersonal gestalt of how parents worked out their roles. We explored multiple factors that influenced their decision making and the unique models that each couple developed.

Considering quality of life for children with cancer: a systematic review of patient-reported outcome measures and the development of a conceptual model.

Objectives: An appraisal of pediatric cancer-specific quality-of-life (QOL) instruments revealed a lack of clarity about what constitutes QOL in this population. This study addresses this concern by identifying the concepts that underpin the construct of QOL as determined by a content analysis of all patient-reported outcome (PRO) instruments used in childhood cancer research.

Methods: A systematic review was performed of key databases (i.

The lived experiences of children and adolescents with end-stage renal disease.

Relatively little is known about how children perceive and manage end-stage renal disease (ESRD) in daily life. To address this gap in the literature, the experiences and perceptions of children with ESRD were examined in this study. Study design comprised ethnographic interviews with 25 children and adolescents ages 7 to 18 years.

An evaluation of pediatric asthma educational resources.

The purpose of this study was to evaluate newly developed educational resources for children with asthma. Children with asthma, their parents, and pediatric health care professionals were invited to review age-appropriate asthma resources. Key findings revealed: (1) the perceived usefulness of these resources, particularly for creating discussion opportunities between children and their caregivers through implemented resource use; (2) the need for health education materials to balance goals of depth of information versus child enjoyment in order to increase effective knowledge transfer and application; and (3) a renewed call for future educational resources to be both relevant and interactive in their outreach and engagement of children, potentially involving mediums of advanced technology.

Experiences and resistance strategies utilized by fathers of children with cancer.

This study examines the experiences of fathers of children diagnosed with cancer. In this grounded theory study, participating fathers were qualitatively interviewed using a theoretical sampling approach. Results indicate fathers to be profoundly affected by their child's condition of cancer.

Pediatric epidemic crisis: Lessons for policy and practice development.

Objectives: This research study addresses health policy and patient care considerations, and outlines policy and practice implications resulting from a crisis in a pediatric setting. This crisis, an epidemic outbreak of Severe Acute Respiratory Syndrome (SARS), dramatically impacted the delivery of health care in Canada. Despite the passage of time since the last diagnosed case of SARS in April 2004, researchers have warned the global community to be prepared for future outbreaks of SARS or other infectious diseases.

Perspectives of mothers with substance use problems on father involvement.

Background: A number of complex factors contribute to pregnant and parenting women's alcohol and substance use. To date, little research has focused on the implications, meaning and experiences of father involvement on mothers with substance use problems.

Objective: The current study explores the experiences of mothers with substance use problems with respect to the role, impact and meaning of father involvement.

Bowlby and Robertson revisited: the impact of isolation on hospitalized children during SARS.

Psychosocial issues related to pediatric isolation remain relevant to both clinical practice and research. The early theories of Bowlby and Robertson are central to this discussion for it was predominantly their work that elicited several policy changes aimed at improving psychosocial care in pediatric settings. Recognizing the significant effects of isolating hospitalized children is just as relevant today where serious infectious diseases can lead to separation of family members.

When family-centered care is challenged by infectious disease: pediatric health care delivery during the SARS outbreaks.

In this ethnographic study, the authors examined the experiences and perspectives of children hospitalized because of SARS (severe acute respiratory syndrome), their parents, and pediatric health care providers. The sample included 5 children, 10 parents, and 8 health care providers who were directly affected by SARS during the time of the outbreaks and extreme infection control procedures. The data analyses illuminated a range of perceived experiences for this triadic sample.