Gwen R Rempel

Gwen R Rempel
Athabasca University · Faculty of Health Disciplines

PhD, RN
Children/youth with complex congenital heart disease and their parents and other family; transition; Circle of Security

About

73
Publications
15,771
Reads
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2,481
Citations
Additional affiliations
July 2016 - June 2020
Athabasca University
Position
  • Chair
May 2013 - June 2021
Athabasca University
Position
  • Professor (Associate)
July 2012 - April 2013
University of Alberta
Position
  • Professor (Associate)
Education
September 1999 - November 2005
University of Alberta
Field of study
  • Nursing
January 1990 - June 1993
University of British Columbia - Vancouver
Field of study
  • Clinical Specialization
September 1979 - June 1983

Publications

Publications (73)
Article
Full-text available
Members of the autistic community have long advocated for more input into and participation with autism-related research. Currently, the power to determine the direction of autism-related research and knowledge production related to autism lies with non-autistic researchers, while the wishes and perspectives of the autistic community are largely ig...
Preprint
Interview Data There is ample evidence that childhood adversity correlates negatively with physical and mental health outcomes across the lifespan. Resilience results when internal and external protective factors in childhood mitigate the effects of adversity and mental and physical health outcomes are improved. However, the phenomena of childhood...
Preprint
Interview Data There is ample evidence that childhood adversity correlates negatively with physical and mental health outcomes across the lifespan. Resilience results when internal and external protective factors in childhood mitigate the effects of adversity and mental and physical health outcomes are improved. However, the phenomena of childhood...
Article
Objective To evaluate the impact of a novel nurse-led transition intervention program designed for young adolescents (age 13-14 years) with congenital heart disease (CHD). We hypothesized that the intervention would result in improved self-management skills and CHD knowledge. Study design Single-center cluster randomized controlled trial of a nurs...
Article
Full-text available
Purpose To understand the effectiveness of a nurse-led transition intervention by analyzing qualitative data generated in the context of a clinical trial. Design & methods Qualitative study of a two-session transition intervention conducted by registered nurses at two sites. Adolescents aged 16–17 years with moderate or complex congenital heart di...
Article
Full-text available
Explanatory style is based on how one explains good and bad events according to three dimensions: personalization, permanence, and pervasiveness. With an optimistic explanatory style, good events are explained as personal, permanent, and pervasive, whereas bad events are explained as external, temporary, and specific. For counsellors, an optimistic...
Preprint
Interview Data There is ample evidence that childhood adversity correlates negatively with physical and mental health outcomes across the lifespan. Resilience results when internal and external protective factors in childhood mitigate the effects of adversity and mental and physical health outcomes are improved. However, the phenomena of childhood...
Preprint
Interview Data There is ample evidence that childhood adversity correlates negatively with physical and mental health outcomes across the lifespan. Resilience results when internal and external protective factors in childhood mitigate the effects of adversity and mental and physical health outcomes are improved. However, the phenomena of childhood...
Article
Nursing in interventional radiology is diverse and multifaceted. This area of specialty nursing has not yet been acknowledged as such or embraced in Canada. Professional development for interventional radiology nurses is lacking with even fewer educational opportunities for non-radiology nurses who care for interventional radiology patients through...
Article
Full-text available
Children and adolescents who live with chronic conditions are rarely participants in research specifically focused on meeting their needs, nor in intervention planning research. There are, however, special considerations required when conducting research with children and adolescents. This article offers Interview Guidelines designed to ensure chil...
Article
Introduction We evaluated the safety and feasibility of high-intensity interval training via a novel telemedicine ergometer (MedBIKE™) in children with Fontan physiology. Methods The MedBIKE™ is a custom telemedicine ergometer, incorporating a video game platform and live feed of patient video/audio, electrocardiography, pulse oximetry, and power...
Preprint
Full-text available
Five sources of methodological data: the interview recordings, transcribed interviews, interviewer’s pre and post field notes, interviewer reflective journals, and team meeting notes.
Preprint
Five sources of methodological data: the interview recordings, transcribed interviews, interviewer’s pre and post field notes, interviewer reflective journals, and team meeting notes.
Article
Full-text available
The proliferation of new video conferencing tools offers unique data generation opportunities for qualitative researchers. While in-person interviews were the mainstay of data generation in qualitative studies, video conferencing programs, such as Zoom Video Communications Inc. (Zoom), provide researchers with a cost-effective and convenient altern...
Article
Full-text available
Background Transition from pediatric to adult healthcare for adolescents with chronic health conditions has emerged as a critical period influencing health outcomes. Suitable transition readiness measures are necessary to facilitate effective planning. Currently, there is little consensus about well-validated transition readiness measures. The purp...
Article
Full-text available
Background: Parental reflective functioning (PRF) is the capacity parents have to understand their own mental states and those of their children, as well as the influence of those mental states on behavior. Parents with greater capacity for PRF are more likely to foster secure attachment with their children. The Parental Development Interview is a...
Article
Full-text available
Background Physical activity is important to maintain and promote health. This is of particular interest in patients with congenital heart disease (CHD) where acquired heart disease should be prevented. The World Health Organization (WHO) recommends a minimum of 2.5 h/week of physical activity exceeding 3 metabolic equivalents (METS) to achieve pos...
Preprint
Full-text available
UNSTRUCTURED Background: Parental reflective functioning (PRF) is the capacity parents have to understand their own mental states and those of their children's, as well as the influence of those mental states on behavior. Parents with greater capacity for PRF are more likely to foster secure attachment with their children. The Parental Development...
Article
Full-text available
Background Transfer of adolescents with congenital heart disease from paediatric cardiology providers to specialized adult congenital heart disease (ACHD) care providers is becoming a standard practice. However, some paediatric cardiologists continue to provide care for their patients into adult life. Little is known about the perspectives of young...
Article
Objective: First, to compare QOL and illness perceptions between patients with a Fontan circulation and patients with anatomically simple defects (ie, atrial septal defects [ASD] or ventricular septal defects [VSD]). Second, to explore illness perceptions as a mediator of the association between congenital heart disease (CHD) diagnosis and QOL. D...
Article
Background. Illness perceptions are cognitive frameworks that patients construct to make sense of their illness. Although the importance of these perceptions has been demonstrated in other chronic illness populations, few studies have focused on the illness perceptions of adults with congenital heart disease (CHD). This study examined (1) inter-cou...
Article
Full-text available
Objective: As physical activity can improve health and reduce the risk of chronic disease, it is important to understand the contributing factors to physical activity engagement among older adults, particularly those living in rural communities to assist in remaining active and healthy as long as possible. The purpose of this study was to gain a d...
Article
Full-text available
Background The population of adolescents and young adults with congenital heart disease (CHD) is growing exponentially. These survivors are at risk of late cardiac complications and require lifelong cardiology care. However, there is a paucity of data on how to prepare adolescents to assume responsibility for their health and function within the ad...
Article
Full-text available
. The European Society for Pediatric Gastroenterology, Hepatology and Nutrition endorses serological diagnosis (SD) for pediatric celiac disease (CD). The objective of this study was to pilot SD and to prospectively evaluate gastrointestinal permeability and mucosal inflammation at diagnosis and after one year on the gluten-free diet (GFD). We hypo...
Article
Objective The population of young adults with congenital heart disease (CHD) or a heart transplant (HTx) is growing rapidly. These survivors require lifelong cardiology care and must assume self-management responsibilities with respect to their health. Accordingly, we sought to assess psychosocial maturity and validity of the Transition Readiness A...
Article
Full-text available
We examined first-time fathers’ and mothers’ perspectives about their ideal world of support in the context of dominant social ideology, ethno-cultural ideals, and the pragmatics of their everyday family, workplace, and socioeconomic circumstances during their first 18 months as parents. Twelve Canadian-born and six Chinese immigrant couples partic...
Article
Background: Data on patient-reported outcomes (PROs) in adults with congenital heart disease (CHD) are inconsistent and vary across the world. Better understanding of PROs and their differences across cultural and geographic barriers can best be accomplished via international studies using uniform research methods. The APPROACH-IS consortium (Asse...
Article
Full-text available
Background: The rapidly growing population of young adults living with congenital heart disease (CHD), currently challenging ill-prepared cardiac care systems, presents a novel population in which to consider the use of mHealth. This methodological study was part of a larger study that tested the effectiveness of a clinic-based nursing interventio...
Technical Report
Full-text available
The Family Resilience Study was initiated based on increasing concern that children who have survived life-saving heart surgery early in life are presenting new challenges to our health and education system that, when unmet, are adding to the stress of parents and families. Although Alberta has a rich array of early intervention services, community...
Article
Objectives Adolescents with heart disease have complex health needs and require lifelong cardiology follow-up. Interventions to facilitate paediatric to adult healthcare transition are recommended, although outcomes are unknown. We sought to determine the impact of a transition intervention on improving knowledge and self-management skills among th...
Article
The goal of this statement is to review available literature and to put forth a scientific statement on the current practice of fetal cardiac medicine, including the diagnosis and management of fetal cardiovascular disease. A writing group appointed by the American Heart Association reviewed the available literature pertaining to topics relevant to...
Article
Background: Access to quality child care is an important support for families with children with disabilities. The objectives of this study were to determine: (1) the current state of inclusion of children with special needs in child care programmes, and (2) the presence of child care staff practices and programme characteristics that support inclu...
Article
The study purpose was to explicate meanings, expectations, and contexts of parenting as women and men prepared to become parents for the first time. We used a prospective, qualitative study design informed by symbolic interactionist and critical feminist perspectives. In-depth interviews were conducted during pregnancy with 21 expectant mothers and...
Article
Background:Nurses have a key role in teaching cardiovascular (CV) surgical patients to manage their post-surgical care after discharge. There is evidence that effective patient teaching contributes to improved quality of life, decreased anxiety and depression and fewer post-CV surgery emergency department visits and hospital readmissions. Despite t...
Article
Advancing technology allows for successful treatment of children with life-threatening illnesses. Effectively assessing and optimally treating a child's distress during their stay in the Pediatric Intensive Care Unit (PICU) is paramount. Objective measures of distress in mechanically ventilated pediatric patients are increasingly available but few...
Article
The positive effect of supportive family environment on burn-injured child's long term outcome is well established. How parents provide this support as they recover with their children is not addressed especially in low and middle income countries where the burn burden is high. It is assumed that parents are non-compliant in bringing their children...
Article
: To describe parental perceptions of decision making concerning their extremely premature newborns who received care in a level III neonatal intensive care unit (NICU). : Seven parents of preterm infants who were born at 24 to 26 weeks' gestation at a western Canadian tertiary NICU. : Qualitative, interpretive description, semistructured interview...
Article
Full-text available
Hypoplastic left heart syndrome (HLHS) is a complex heart malformation that requires life-saving treatments. Parents experience numerous challenges as they learn to parent a child with complex care requirements. The following research question guided this qualitative study: Is the parenting process among parents of a child with HLHS characterized b...
Article
Full-text available
BACKGROUND: Burn injury is one of the major traumas that a child can experience. Parents of burn-injured children experience anxiety, depression, guilt and post traumatic stress disorders as they care for their burn-injured children. Such empirical evidence related to effects of burns on parents and parenting process is unavailable from low and mid...
Article
Aim: To report a grounded theory study to describe the process of parenting young children who have survived hypoplastic left heart syndrome to inform parent-focused interventions. Background: Technological advances in paediatric cardiology worldwide have improved the survival rates for young children with hypoplastic left heart syndrome who und...
Article
Full-text available
The purpose of the study was to conceptualize the needs of parents of young children with hypoplastic left heart syndrome (HLHS) to provide a theoretical framework to inform the development of future parent interventions. Participants were parents and grandparents ( n = 53 ) of 15 young children who had undergone the Sano surgical approach for HL...
Article
Full-text available
The Family Management Style Framework (FMSF) was used as a conceptual basis for secondary data analysis of 55 previously conducted interviews with mothers and fathers of children with a lethal congenital condition from two surgical treatment eras. The directed content analysis was guided by a coding structure developed from family management dimens...
Article
To identify risk factors for loss to cardiology follow-up among children and young adults with congenital heart disease. We used a matched case-control design. Cases were born before January, 2001 with moderate or complex congenital heart disease and were previously followed up in the paediatric or adult cardiology clinic, but not seen for 3 years...
Article
This research note focuses on interpreter-facilitated cross-language qualitative interviews. Although researchers have written about strategies and procedures for working with interpreters, rarely have they offered adequate detail to determine the relative merits of various approaches, and little attention has been paid to the influence that interp...
Article
PURPOSE. This study described the role normalization played for parents related to their young children with hypoplastic left heart syndrome. DESIGN AND METHODS. The data source for this secondary analysis was 30 interviews with 16 parents. RESULTS. Three themes were identified: normalization, parental perception of child vulnerability, and optimis...
Article
Mothers’ perspectives of the processes involved in addressing the feeding challenges of children with autism spectrum disorder (ASD) were explored qualitatively. The research question was: What is the process of mothers’ feeding their children with an ASD who have feeding challenges, and specifically what is the nature of these challenges? Data we...
Article
Full-text available
Improvements in long-term survival of children undergoing the Norwood staged procedure and the arterial switch operation have resulted in the need to prepare these at-risk children for each stage of their developmental trajectory, including school readiness. This study describes and compares functional outcomes following the Norwood staged procedur...
Article
Parents of children diagnosed with a complex congenital heart anomaly such as hypoplastic left heart syndrome (HLHS) are faced with the challenge of choosing the best treatment option for their children. Parents must decide among options of compassionate care, palliative reconstructive surgery, or neonatal cardiac transplantation, and additionally...
Article
This paper is a report of a study of the process of grandparent involvement with siblings of preschool children with hypoplastic left heart syndrome. An increasing number of grandparents are involved in parental or near-parental roles with their grandchildren. Most research concerns grandparent involvement due to parental issues (e.g. teenage pregn...
Article
To explore parents' experience and satisfaction with care in the Neonatal Intensive Care Unit (NICU). Design: Qualitative design using an interpretive description method. Setting: A tertiary-level care 69-bed NICU. Participants: Ten parents (nine mothers and one father) were interviewed. Parents were interviewed in person or via telephone, either f...
Article
Neonatal intensive care is an area of healthcare that has experienced significant growth in recent years. As a result, "megaunits" of more than 60 beds are not uncommon. Delivering care in units of this size that incorporates the principles of family-centered care and that is satisfying to both staff and parents is challenging. One proposed method...
Conference Paper
Background: From the moment of their child’s birth, mothers commence the intricate dance of responding to their child in order to meet his or her feeding needs. This can be particularly challenging when the child has Autism Spectrum Disorder (ASD) as 46-89% of children with ASD have feeding challenges (Ledford & Gast, 2006). The frequency of feed...
Article
Full-text available
Developing technology affords children with complex congenitally malformed hearts a chance for survival. Parents gratefully pursue life-saving options on behalf of their children, despite the risks to the life of their child, and uncertainty about outcomes. Little is known about how mothers and fathers experience parenting a child whose new state a...
Article
Of 350,000 Canadian children born each year, 2% to 3% will have a serious congenital anomaly. Because of recent ultrasound diagnostic improvements and increased frequency of prenatal scans, many anomalies are determined prenatally, with more parents receiving disturbing, unanticipated news of an anomaly. This article highlights the experiences, con...
Article
This article argues for the concurrent and comparative use of genograms and ecomaps in family caregiving research. A genogram is a graphic portrayal of the composition and structure of one's family and an ecomap is a graphic portrayal of personal and family social relationships. Although development and utilization of genograms and ecomaps is roote...
Article
The purpose of this study is to describe the process of parenting a child with life-threatening heart disease. Despite advances in pediatric cardiac sciences, hypoplastic left heart syndrome remains difficult and controversial to treat. The Norwood surgical approach is a developing technology, and little is known about how mothers and fathers exper...
Article
This paper reports a systematic review of the effectiveness of interventions for fathers with infants or toddlers. Nurses and other healthcare professionals work closely with families of infants and young children. This contact provides an opportunity to promote positive parent-child interactions and optimal child development. Previous research has...
Article
The authors successfully used the card sort data collection technique with 17 female family caregivers in a large ethnographic study of non-support. In this article, they describe the practical issues they addressed. Initially, they developed strategies to construct meaningful statements that reflected key themes and were manageable in an interview...
Article
Ongoing technological advances in pediatrics are improving the survival rates among babies born with life-threatening anomalies. For these neonates, surgeries like brain shunts, trachea, gut and heart reconstruction, and organ transplants are replacing palliative care. Although parents and health care professionals alike are celebrating the success...
Article
To discover and describe how prospective parents make decisions when they learn of their baby's congenital heart disease (CHD) during pregnancy, and to provide professionals with direction for their interactions with these families. Qualitative analysis informed by symbolic interactionism. A tertiary care women's health center that provided referra...
Article
Increasingly, women seek involvement in decisions about their health care. The purpose of this study was to examine women's experience of, and satisfaction with, their involvement in health care decisions during a high-risk pregnancy. Forty-seven women with hypertension or threatened preterm delivery (including multiple births) were interviewed aft...
Article
The primary objective of the Program was to increase access to the services of PC in the province of British Columbia, where a population of 3.7 million is served by a single PC centre on the southern border. Evaluation included standardized recording of medical outcomes and participant satisfaction. Referrals from all pediatricians and follow up r...