Nancy Lynn Young

Nancy Lynn Young
Children's Hospital of Eastern Ontario · Research Institute

BScPT, MSc, PhD

About

201
Publications
78,449
Reads
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7,497
Citations
Introduction
Dr. Young Senior Scientist at the CHEO Research Institute. Throughout her career, she has worked to ensure the voices of children are heard in health research. Child-centric methods are of critical importance in the measurement of children’s health and have been at the forefront of her research. A sample of her current research is available at www.ACHWM.ca.
Additional affiliations
December 2018 - present
Institute for Clinical Evaluative Sciences
Position
  • Senior Researcher
July 2018 - present
Laurentian University
Position
  • Managing Director
Description
  • Responsible for the oversight of the Interdisciplinary Health Masters program and the Interdisciplinary PhD Program in Rural and Northern Health
September 2015 - present
Laurentian University
Position
  • Research Chair
Education
June 1994 - January 1997
University of Toronto
Field of study
  • Medical Science
September 1992 - May 1994
University of Toronto
Field of study
  • Clinical Epidemiology
September 1983 - May 1987
University of Toronto
Field of study
  • Physical Therapy

Publications

Publications (201)
Article
Full-text available
p> OBJECTIVES: The Aboriginal Children’s Health and Well-Being Measure© (ACHWM) was developed to assess health from the perspectives of Aboriginal children. The purpose of this paper is to document the screening process, embedded within the ACHWM, and assess its effectiveness. METHODS: The ACHWM was implemented in 2014/2015 with children 8 to 18 y...
Article
Full-text available
PurposeThe aim of this research was to evaluate the reliability of the Aboriginal Children’s Health and Well-Being Measure© (ACHWM). Methods Two cohorts of children from Wiikwemkoong Unceded Territory were recruited for this study. Each child completed the ACHWM independently on a computer tablet running a customized survey app. The data from the f...
Article
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Background: Aboriginal children experience challenges to their health and well-being, yet also have unique strengths. It has been difficult to accurately assess their health outcomes due to the lack of culturally relevant measures. The Aboriginal Children's Health and Well-Being Measure (ACHWM) was developed to address this gap. This paper describ...
Article
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The purpose of this study was to identify concepts of health and well-being important to Aboriginal children and youth. These concepts were necessary for the development of a culturally appropriate measure of health. We completed 4 community consultation sessions, 4 advisory committee meetings, and 6 full-day focus groups within the Wikwemikong Unc...
Article
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Disease-specific quality of life (QoL) measures have enhanced the capacity of outcome measures to evaluate subtle changes and differences between groups. However, when the specific disease is rare, the cohort of patients is small and international collaboration is often necessary to accomplish meaningful research. As many of the QoL measures have b...
Preprint
Introduction: Though numerous research pursuits in Indigenous communities have been undertaken, very few have consistently addressed community priorities, or collaborated with Indigenous peoples throughout the research process. This scoping review protocol proposes to explore the existing wise consent processes that respect the rights of Indigenous...
Article
Full-text available
Background Patients with hemophilia may experience joint damage, which can impair participation, yet few studies have examined the impact hemophilia may have on social participation and quality of life. Objectives The aims of this study are to assess the relationship between patient social participation and self-perception, social support, and imp...
Article
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Background/Objectives Heavy menstrual bleeding (HMB) affects 34% to 37% of adolescent girls. The Menstrual Bleeding Questionnaire (MBQ) is a validated measure of menstrual bleeding–specific health-related quality of life (HRQoL) for women aged ≥18 years. No similar measure existed for adolescents with HMB. Patients/Methods HMB was defined by the P...
Article
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Introduction This study aimed to assess the impact of hemophilia on families, in the context of current and emerging hemostatic therapies, and explore the need for a hemophilia‐specific tool targeted at parents of boys aged <4 years. A secondary aim was to develop and validate the new tool. Methods Focus groups were conducted with parents of boys...
Article
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The primary objective of this systematic review was to investigate how Western focus groups and Indigenous sharing circles have been blended for the study of Indigenous children’s health. The secondary objective of this study was to propose recommendations for adapting focus groups to include elements of sharing circles. This systematic review was...
Article
Full-text available
Introduction The purpose of this study was to review and update the content of the Canadian Hemophilia Outcomes–Kids’ Life Assessment Tool version 2.0 (CHO‐KLAT), in the context of extended half‐life (EHL) factor concentrates (FCs) and to establish the validity and reliability of the updated CHO‐KLAT. Methods Focus groups were conducted with boys...
Article
Full-text available
Introduction Heavy menstrual bleeding (HMB) is a common problem among adolescent girls that affects many aspects of their lives. Estimating the effect of HMB on health-related quality of life (HRQoL) is important but challenging, as there is no instrument that measures menstrual bleeding-specific HRQoL for girls ages < 18 years. Aim To develop and...
Article
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Mi’kmaq Elder Albert Marshall coined “Two-Eyed Seeing” in 2004, an Indigenous concept that emphasizes integrating the strengths of multiple perspectives to address complex challenges in ways that benefit all. In 2011, Two-Eyed Seeing became a policy of the Canadian Institutes of Health Research (CIHR)–Institute of Aboriginal Peoples’ Health, as a p...
Article
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Introduction: Health-related quality of life evaluation is recognized as an important outcome in the assessment of boys with haemophilia. In fact, reliable health-related quality of life data are even more critical in developing countries to advocate for government agencies to develop national haemophilia care programmes. However, validated tools...
Article
Introduction: In many countries, there is a shift from standard half-life (SHL) to extended half-life (EHL) clotting factor concentrates (CFCs). Aim: To describe the experience of switching from SHL to an EHL FVIII CFC and the impact of this on frequency of infusions, factor consumption, bleeding rates and HRQoL using the Canadian Hemophilia Kid...
Article
The Outdoor Adventure Leadership Experience (OALE) is an outdoor health promotion initiative primarily designed for youth. This program was developed through community-based participatory research in a First Nations Community in northern Ontario: Wiikwemkoong Unceded Territory. It is a 9- or 10-day intensive program involving a wilderness canoe exp...
Article
Full-text available
Background Prophylaxis reduces the frequency of bleeds in boys with severe hemophilia and is the standard care for their management in resource‐abundant countries. The effect of prophylaxis on Health‐Related Quality of Life (HRQoL) has not been established, because the sample sizes of most studies are too small to explore the relationship of multip...
Article
Full-text available
BACKGROUND: The Aboriginal Children’s Health and Well-Being Measure (ACHWM©) was developed to enable Aboriginal health leaders to gather information on the health of children at a local community level. This paper aims to describe the typical health profiles of First Nation children, living on traditional territory, as a reference to assist in the...
Article
Full-text available
Introduction: Physical activity is one way to ameliorate the disproportionately high obesity rates among Indigenous children yet little is known about the determinants of physical activity in First Nation communities. Methods: A socioecological approach was used to explore the determinants that influence physical activity among Indigenous childr...
Article
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Introduction Diabetic ketoacidosis (DKA), a life-threatening complication of diabetes, is the leading cause of mortality and disability in children. The high cost of care for DKA and negative consequences of DKA on child’s health are known; however, the pediatric DKA trends in Ontario were not studied in the last fifteen years. Objectives and Appr...
Article
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Colonialism is a fundamental determinant of Indigenous people’s health in Canada, yet little is known about its effects on food systems and dietary decisions in First Nation communities. A socioecological approach was used to explore the determinants of dietary decisions made by Indigenous caregivers. Conclusions are drawn from a narrative analysis...
Article
Health solutions for Aboriginal children should be guided by their community and grounded in evidence. This manuscript presents a prospective cohort study protocol, designed by a community-university collaborative research team. The study’s goal is to determine whether community-based screening and triage lead to earlier identification of children’...
Article
Background: Hospitalized children continue to experience inadequate pain management. Children in the rural hospital setting may be at risk due to unique challenges experienced by Registered Nurses (RNs) in this context. Objectives: To understand the experience of pain care from RNs who work in rural hospitals with inpatient pediatric patients....
Article
Introduction Jamaica has an estimated 200 persons with haemophilia (PWH), who face significant constraints in access to specialized haemophilia care, including access to clotting factor concentrates. Aim The aim of this paper is to establish the current burden of disease in PWH in Jamaica. Methods PWH were enrolled through the University Hospital...
Chapter
I walked into the examination room to see my second patient of the day—five other families were quietly sitting in the waiting room awaiting their turn. She was a 15-year-old girl with immune thrombocytopenia (ITP) diagnosed just over 1 year ago. Her platelet count ranged from 20 to 30 × 10⁹/l, but she had not required any emergency department visi...
Article
Introduction: The treatment of haemophilia varies across countries and across regions within some countries. Similar variation has been observed in health-related quality of life (HR-QoL). Relatively little is known about the HR-QoL of boys with haemophilia in China. Aim: The aim of this study was to describe the HR-QoL of boys with haemophilia...
Article
Objective: To date, there are no standardized disease activity tools for systemic juvenile idiopathic arthritis (sJIA). We developed a core set of disease activity measures for sJIA. Methods: We conducted a validation study in patients with sJIA recruited from 3 Canadian institutions. Disease activity scores were based on questionnaires, clinica...
Article
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Traumatic brain injury (TBI) is a leading cause of death and disability in developed countries and in Ontario. Trauma is the primary cause of neurological injury contributing to disability and loss of productive years. Neurological assessment remains the cornerstone to identifying evolving injury and planning care. A comprehensive assessment includ...
Article
Introduction: Although the regular replacement of clotting factor concentrates (prophylaxis) has been well established as the standard of care for severe haemophilia, the high cost of factor concentrates has limited access to prophylaxis in countries with under-developed or developing economies. Aims: We studied the health gap that could be addr...
Article
Background: The evaluation of health related quality of life (HRQOL) is essential for a full assessment of the influence of an illness on patients' lives. The aim of this paper is to critically appraise and compare the measurement properties of HRQOL questionnaires studied in haemophilia. Methods: Bibliographic databases (Embase, Medline, Cinahl...
Article
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Introduction: Aboriginal children in Canada experience significant disparities in health in comparison to their mainstream peers. As Aboriginal communities and agencies strive to improve health, it is important to measure the impact of new programs and services. Since many Aboriginal children live in rural and remote communities, it is important t...
Article
Introduction: Treatment for boys with haemophilia in China is rapidly improving; however, comprehensive outcomes have not been examined prospectively. Aim: The aim of this study was to evaluate the effect of short-term full-dose prophylaxis compared to on-demand treatment, on the Health-Related Quality of Life (HR-QoL) of boys with severe haemop...
Article
A survey was developed and used to determine the level and quality of vision care services available to First Nations elementary school children across Ontario, and to indirectly determine the level of uncorrected refractive error in First Nations children. Overall, the total survey results showed that 1 child in 4 wore glasses. The results from th...
Article
Un sondage a été élaboré et utilisé pour déterminer le niveau et la qualité des services de soins de la vue offerts aux enfants des écoles primaires des Premières nations de l’Ontario et déterminer indirectement le niveau d’erreurs de réfraction non corrigées chez les enfants des Premières nations. Dans l’ensemble, les résultats du sondage ont révé...
Article
Accessible built environments are a critical component of Canada’s commitment to disabled children’s ‘right to enjoy full and decent lives’ [United Nations Convention on the Rights of the Child. 1989 United Nations Convention on the Rights of the Child. 1989. Convention on the Rights of the Child. New York. [Google Scholar]. Convention on the Right...
Article
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Background This study was undertaken to explore the longitudinal patterns of health-related quality of life (HRQoL) among youth and young adults with Hemophilia A (HA) over a 3-year period. This report presents the baseline characteristics of the study cohort. Methods Males, 14 to 29 years of age, with predominantly severe HA were recruited from si...
Article
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Background When availability and/or affordability of anti-hemophilic factor concentrates are limited, optimal prophylaxis regimens in severe hemophilia A (HA) remain to be determined. In selected situations, low-dose daily prophylaxis (LDDP) may be an effective and economical option. The goal of our study was to evaluate if subjects on a LDDP regim...
Article
As a paediatrician, you follow a number of children with chronic health conditions in your practice. You provide them with a variety of therapies and would like to know whether your treatments are having an impact, in particular whether there has been a change in the patient's health-related quality of life (HRQOL). HRQOL measures have the potentia...
Article
Introduction: It is essential to assess the health-related quality of life outcomes of boys with haemophilia in Brazil. The Canadian Haemophilia Outcomes-Kids Life Assessment Tool (CHO-KLAT) was recently adapted for this population. Aim: To test the construct validity of the Portuguese version of the CHO-KLAT. Methods: We recruited 50 boys, wi...
Article
Full-text available
Background: As with many Indigenous groups around the world, Aboriginal communities in Canada face significant challenges with trauma and substance use disorders (SUD). Treatment for intergenerational trauma (IGT) and SUD is challenging due to the complexity of both disorders. There is strong evidence that strengthening cultural identity, incorpora...
Article
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Objective: The purpose of this study was to explore whether the blending of traditional Indigenous healing practices and a mainstream treatment model, Seeking Safety, resulted in a reduction of Intergenerational Trauma (IGT) symptoms and Substance Use Disorders (SUD). Methods: A mixed-methods design was used to evaluate the impact of a 13 week Indi...
Article
Full-text available
In this article, the authors describe the research process undertaken to incorporate Two-Eyed Seeing Indigenous decolonizing methodology into the treatment of intergenerational trauma and substance use disorders in Aboriginal peoples living in Northern Ontario, Canada, using the Seeking Safety model. Using both qualitative and quantitative methods,...
Conference Paper
Full-text available
Youth Research and Evaluation eXchange and the Research Centre for Evaluating Children’s Health Outcomes (ECHO) invite you to join us for an interactive and informative workshop about collaborative evaluation processes focused on First Nations children and youth in rural communities
Article
Full-text available
Background There are emerging opportunities to improve the health of Aboriginal children and youth. The Aboriginal Children’s Health and Well-being Measure (ACHWM) was developed to enable Aboriginal communities to obtain group-level data from the perspectives of their children 8 to 18 years of age. The survey was developed in collaboration with chi...
Chapter
Community-based participatory research (CBPR) and realist evaluation (RE) seem to be complimentary frameworks for Aboriginal health, and they appear to be useful approaches for adventure therapy. CBPR is a collaborative approach to program development and research that is gaining currency as an effective way to meet the needs of individual Aborigin...
Chapter
It is imperative that we improve the mental health of Aboriginal youth in Canada. From an Aboriginal worldview, mental health must be approached in concert with the promotion of spiritual, physical, and emotional health. This holistic approach is concordant with the processes implicit in programs using outdoor adventure and experiential education (...
Article
Full-text available
Indigenous voices are largely silent in the outdoor education and adventure therapy literature. The purpose of this research collaboration was to understand how a 10-day outdoor adventure leadership experience (OALE) may promote resilience and well-being for Indigenous youth through their participation in the program. The process was examined throu...
Article
In western democracies like Canada, children develop understandings of themselves by participating in physical, social, and civic activities. Such activities occur in the built environments within which they live, learn, and play. Children with motor impairments are only able to engage in these activities in environments that are accessible. These...
Article
To determine Ontario schools' accessibility and inclusivity for disabled children, we conducted a mixed-methods study using child-/ disability-friendly participatory techniques with children with mobility impairments. Findings from a case study series (n=13) and a cross-sectional survey (n=406) comprise clear evidence that disabled children face si...
Article
Health-related quality of life (HRQoL) assessment is recognized as an important outcome in the evaluation of different therapeutic regimens for persons with haemophilia. The Canadian Haemophilia Outcomes-Kids' Life Assessment Tool (CHO-KLAT) is a disease-specific measure of HRQoL for 4 to 18-year-old boys with haemophilia. The purpose of this study...
Article
It is important to assess the health-related quality of life outcomes of boys in China, but there are no tools validated for this purpose. The objective of the study was to assess the validity of the Simplified Chinese version of the CHO-KLAT2.0. We recruited 60 boys with either haemophilia A (HA) or haemophilia B (HB) and their parents from four r...
Article
Objective: To describe changes in gross motor function and health-related quality of life (HRQOL) in adults with cerebral palsy (CP). Design: An 8-year follow-up survey. Setting: Participants who completed the baseline survey in 2003 were invited. Participants: The sample of adults with CP (N=54; response rate=37%) included a "younger group"...
Article
Full-text available
Aboriginal people in Canada (First Nations, Inuit and Métis) have a lower health status compared to the Canadian population. There is a particular concern about the mental health and wellbeing of First Nations adolescents living on reserves. Interventions following principles of outdoor education and adventure therapy appear to be an appropriate fi...
Article
Purpose: The purpose of this qualitative study was to explore the experiences of youth with different disabilities from across Canada during their transitions from adolescence to adulthood. Methods: Qualitative methods, using a phenomenological tradition, explored the meaning of the lived experiences of youth with disabilities in transition to a...
Article
Full-text available
To the editor: In their recommendations for diagnosis and treatment of the myelodysplastic syndromes (MDS),[1][1] the European Leukemia Net point out the crucial role of quality of life (QoL) assessment, as affected patients are most often elderly and have a largely incurable disease. We agree that
Article
Background: Physical activity has the potential to be an efficient and effective strategy for harm reduction and cessation among smokers. However, much remains to be known in this area of inquiry. The purpose of this study was to address the following question: How do smokers perceive that physical activity affects their smoking behaviour? Methods:...