Laura Rogers | Athabasca University (original) (raw)

Papers by Laura Rogers

Research paper thumbnail of Timelines for returning to physical activity following pediatric spinal surgery: recommendations from the literature and preliminary data

BMC Research Notes, Apr 29, 2021

Research paper thumbnail of Mothers feeding their children with autism spectrum disorder: achieving a tenuous balance

This thesis is dedicated to my husband and best friend Neil Mitchell Rogers who has walked every ... more This thesis is dedicated to my husband and best friend Neil Mitchell Rogers who has walked every step of the way with me and supported me in this incredible journey.

Research paper thumbnail of Mothers’ Challenges in Feeding their Children with Autism Spectrum Disorder—Managing More Than Just Picky Eating

Journal of Developmental and Physical Disabilities, Aug 18, 2011

Mothers' perspectives of the processes involved in addressing the feeding challenges of children ... more 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 were from semi-structured interviews with 11 mothers of 12 children with ASD ranging from 4-11 years. This grounded theory study used constant comparative analysis in developing categories to define the processes mothers used in understanding and then meeting the feeding needs of their children with ASD. Four feeding processes emerged from the analysis. 1) recognizing the feeding challenges, 2) defining the underlying nature of the feeding challenges, 3) seeking support for and validation of the feeding challenges, and 4) staging their approach. The feeding challenges had three different patterns of onset and went beyond typical picky eating behaviors.

Research paper thumbnail of Abstract 19104: The Relationship of Parent Well-Being, Family Management, and Service Utilization in Families of Children With Hypoplastic Left Heart Syndrome From the Perspective of Mothers and Fathers

Circulation, Nov 26, 2013

Background: Given the prevelance of neurodevelopmental impairments in children with hypoplastic l... more Background: Given the prevelance of neurodevelopmental impairments in children with hypoplastic left heart syndrome (HLHS), and recommendations that they have early intervention, parents’ patterns of service utilization for their at-risk child warrants investigation. The purpose of this study was to (1) delineate parent, child, and family needs from the perspective of parents, and (2) identify the services and resources used and needed by parents to support themselves, their children, and their family. Method: Descriptive study employing the Family Management Measure (FaMM), Connor-Davison Resilience Scale (CD-RISC), Parenting Stress Index (PSI), Vineland Adaptive Behaviour Scales (VABS) and Education and Rehabilitation Services Questionnaire (ERSQ). Findings: Questionnaires were sent to 64 families. Thirty-four parents, 21 mothers and 13 fathers, from 22 families returned questionnaires ( 38% response rate). Mean age of the children was 4.81 years (range 13 months to 15 years). There was no significant difference between the resilience of mothers and fathers, with 5/32 (19%) scoring in the post-traumatic stress category. For parenting stress, 10 of 30 (33%) of parents scored in the clinically significant range. Ten of 24 (41%) parents fell into the problematic family management category. Half of the children on the Vineland had typical or above average mean scores. Four of the 22 children living with severe morbidities were receiving education and rehabilitation services. Children with mild to moderate morbidities, including inattention, learning and behavior difficulties, progressive hearing loss and sensory issues, were not receiving adequate services. Minimal community-based services for parents were reported. Conclusion: The presence of an impairment such as HLHS does not predict service needs or outcomes from a functional perspective. Rather, persistent comorbidities have distinct meaning for each child, parent, and family. Therefore, when considering intervention for both the child and the parent, it is important to consider parents’ perceptions the child’s limitations and community participation and how these perceptions influence their parenting processes, especially related to service utilization.

Research paper thumbnail of A Typology of Transition Readiness for Adolescents with Congenital Heart Disease in Preparation for Transfer from Pediatric to Adult Care

Journal of Pediatric Nursing, Sep 1, 2021

PURPOSE To understand the effectiveness of a nurse-led transition intervention by analyzing quali... more 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 disease (CHD) had been randomized to a two-session transition intervention or usual care. Session 1 emphasized patient education including creation of a health passport and goal setting. Session 2, two months later, emphasized self-management. Qualitative data extracted from intervention logs, field notes and audio recordings of the sessions were analyzed for content and themes. RESULTS Data from 111 transition intervention sessions with 57 adolescents were analyzed. Creating a health passport, goal setting, and role-plays were the elements of the intervention most valued by participants. A typology of transition readiness was identified: 1) the independent adolescent (5%), already managing their own care; 2) the ready adolescent who was prepared for transition after completing the intervention (46%); 3) the follow-up needed adolescent who was still in need of extra coaching (26%), and 4) the at-risk adolescent who warranted immediate follow-up (14%). Baseline knowledge and transition surveys scores validated the typology. CONCLUSIONS A two-session nursing intervention met the transition needs of approximately half of adolescents with CHD. However, additional transition-focused care was needed by 40% of participants (groups 3 and 4). PRACTICE IMPLICATIONS These findings will guide pediatric nurses and other healthcare professionals to optimize an individualized approach for ensuring transition readiness for adolescents with CHD.

Research paper thumbnail of Parental Vigilance in Caring for Their Children with Hypoplastic Left Heart Syndrome

PubMed, Aug 19, 2015

Hypoplastic left heart syndrome (HLHS) is a complex heart malformation that requires life-saving ... more 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 by exaggerated vigilant parental action, and if so, how does this influence parental response? Situated within a larger program of pediatric cardiology research, this study included data from two grounded theory studies with parents of children with HLHS. This secondary analysis involved a thematic content analysis using sensitizing concepts of uncertainty, protectiveness, support, and mastery of complex care. Transcribed data from 55 interviews with 24 mothers and 17 fathers of young children with HLHS were analyzed for relevant and recurring themes. In mastering skills required to care for their child with HLHS, parents contrasted what was in their hands with what was out of their hands. Vigilant parental actions were evident as parents became skilled at providing complex care. Parents said they were sometimes excessive in their vigilant actions. In retrospect they viewed this vigilance as appropriate in some situations but exaggerated in other situations. Understanding parents' vigilant actions in response to their child's complex care can guide health care providers' interactions with families. Long-term follow up, both clinically and through research, is needed to assess the long-term consequences of exaggerated vigilant parental action on the child, parent, and family, and to determine and evaluate appropriate and timely intervention.

Research paper thumbnail of Facets of Parenting a Child with Hypoplastic Left Heart Syndrome

Nursing Research and Practice, 2012

The purpose of the study was to conceptualize the needs of parents of young children with hypopla... more 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 HLHS. Analysis of recorded and transcribed single interviews with each participant was done as directed by interpretive description methodology. A model of five facets of parenting was conceptualized. These included survival parenting, "hands-off " parenting, expert parenting, uncertain parenting, and supported parenting. The facets of parenting delineated through this study provide a theoretical framework that can be used to guide the development and evaluation of interventions for parents of children with complex congenital heart disease and potentially other life-threatening conditions. Each facet constitutes a critical component for educational or psychosocial intervention for parents.

Research paper thumbnail of The Process of Family Management When a Baby Is Diagnosed With a Lethal Congenital Condition

Journal of Family Nursing, Jan 5, 2012

The Family Management Style Framework (FMSF) was used as a conceptual basis for secondary data an... more 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 dimensions identified in prior research of family response to childhood chronic conditions. Results indicated that application of the FMSF was helpful in differentiating families and their processes of family management at the onset of their infant’s illness through to surviving the first surgery and going home. The dimensions of Illness View and Child Identity were central to the parents’ capacity to manage their baby’s illness demands within their family context. Applying a robust family framework to a complex neonatal condition at illness onset provides compelling direction for clinical interventions and their rigorous evaluation.

Research paper thumbnail of Parenting under Pressure: a grounded theory of parenting young children with life-threatening congenital heart disease

Journal of Advanced Nursing, May 22, 2012

rempel g.r., ravindran v., rogers l.g. & magill‐evans j. (2013) Parenting under pressure:... more rempel g.r., ravindran v., rogers l.g. & magill‐evans j. (2013) Parenting under pressure: a grounded theory of parenting young children with life‐threatening congenital heart disease. Journal of Advanced Nursing69(3), 619–630. doi: 10.1111/j.1365‐2648.2012.06044.xAim. 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 undergo staged surgical palliation. These children, however, are at risk for life‐threatening complications and parents are charged with the responsibility to monitor their children at home with minimal support and guidance from healthcare professionals once home.Design. A constructivist grounded theory study.Method. The study was conducted in 2006–2008. Participants were 25 parents (15 mothers, 10 fathers) and 28 grandparents (17 grandmothers, 11 grandfathers) of 15 young children (6 months–4·5 years) who had undergone the Sano surgical approach for hypoplastic left heart syndrome. The 53 interviews were digitally recorded, transcribed and analysed using open and focused coding, constant comparative analysis and memoing.Findings. A process of Parenting under Pressure emerged that was characterized by four overlapping and re‐emerging phases: (1) realizing and adjusting to the inconceivable; (2) growing increasingly attached; (3) watching for and accommodating the unexpected; and (4) encountering new challenges.Conclusions. In‐depth understanding of the phases of Parenting under Pressure provides direction for nurses to support parents of children who survive hypoplastic left heart syndrome. Interventions that help carers of children with complex health conditions move through the phases of our Parenting under Pressure process may help them safeguard the survival of their children, and their own survival as parents as they manage multiple demands.

Research paper thumbnail of Research conversations with children and adolescents: Development and use of comprehensive interview guidelines

Research paper thumbnail of Meeting the Needs of Parents of Children With Scoliosis: A Qualitative Descriptive Study

Global Qualitative Nursing Research, 2021

Needs of parents with children with scoliosis are complex and depend on their child’s treatments.... more Needs of parents with children with scoliosis are complex and depend on their child’s treatments. The purpose of this study was to identify needs of parents with children with scoliosis. This qualitative description involved interviews with parents of children at various stages of treatment. A convenience, then purposeful sample of 16 parents (12 mothers, two fathers, and two stepfathers) was interviewed; interviews were transcribed and analyzed using thematic analysis. Parents’ needs included: Needing reliable medical information; Desiring information on complementary treatments; Wanting help in supporting and advocating for their child; Needing to protect the child and family; and Seeking connection and support. Although many parents’ needs are being met, this study recommends a nursing role aimed at providing parents with reliable medical information, discussing alternative treatments, assisting parents in their role of supporting their child, helping parents in their advocacy ef...

Research paper thumbnail of Research conversations with children and adolescents: Development and use of comprehensive interview guidelines

Five sources of methodological data: the interview recordings, transcribed interviews, interviewe... more Five sources of methodological data: the interview recordings, transcribed interviews, interviewer’s pre and post field notes, interviewer reflective journals, and team meeting notes.

Research paper thumbnail of Beyond the Interview Guide: Experiences of Practically and Mindfully Implementing Interview Guidelines When Conducting Research With Children and Adolescents With Chronic Conditions and Their Siblings

International Journal of Qualitative Methods

Children and adolescents who live with chronic conditions are rarely participants in research spe... more 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 children and adolescents’ control of and comfort with interviewing and to maximize the caliber of ethically co-constructed data. We developed, tested, and revised these guidelines with 80 children and adolescents aged 5 to 17 years: 27 with complex Congenital Heart Disease (CCHD) (5–17 years) and 13 with Early Onset Scoliosis (5–12 years) and 28 siblings (7–17 years). The guidelines were further tested with 12 adolescents with Adolescent Idiopathic Scoliosis (10–16 years) and 10 children and adolescents with CCHD (8–12 years). The children and adolescents recounted stories about their everyday life and activities through digitally recorded fac...

Research paper thumbnail of Alberta Centre for Child, Family & Community Research (ACCFCR) "There is so much more to a child than their heart" Supports and Services for Children with Complex Congenital Heart Disease and Their Parents FINAL REPORT

The Family Resilience Study was initiated based on increasing concern that children who have surv... more 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 rehabilitation and educational support services, and financial support systems for children with disabilities and their parents/families, there has been a mismatch between these services and the needs of children with complex congenital heart disease (CHD). The medical needs of these children, who undergo three major heart surgeries, endure prolonged hospitalizations and repeated invasive procedures, understandably need to trump their developmental needs in the early years. By school entry, not only are some of these children having difficulty learning, they are also experiencing emotional and behavioural challenges. Gaining in-depth unde...

Research paper thumbnail of Facets of Parenting a Child with Hypoplastic Left Heart Syndrome

Nursing Research and Practice, 2012

The purpose of the study was to conceptualize the needs of parents of young children with hypopla... more 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 HLHS. Analysis of recorded and transcribed single interviews with each participant was done as directed by interpretive description methodology. A model of five facets of parenting was conceptualized. These included survival parenting, “hands-off” parenting, expert parenting, uncertain parenting, and supported parenting. The facets of parenting delineated through this study provide a theoretical framework that can be used to guide the development and evaluation of interventions for parents of children with complex congenital heart disease and potentially other life-threatening conditions. Each facet constitutes a critical component for educational...

Research paper thumbnail of The Process of Family Management When a Baby Is Diagnosed With a Lethal Congenital Condition

Journal of Family Nursing, 2012

The Family Management Style Framework (FMSF) was used as a conceptual basis for secondary data an... more 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 dimensions identified in prior research of family response to childhood chronic conditions. Results indicated that application of the FMSF was helpful in differentiating families and their processes of family management at the onset of their infant’s illness through to surviving the first surgery and going home. The dimensions of Illness View and Child Identity were central to the parents’ capacity to manage their baby’s illness demands within their family context. Applying a robust family framework to a complex neonatal condition at illness onset provides compelling direction for clinical interventions and their rigorous evaluation.

Research paper thumbnail of Mothers’ Challenges in Feeding their Children with Autism Spectrum Disorder—Managing More Than Just Picky Eating

Journal of Developmental and Physical Disabilities, 2011

Mothers' perspectives of the processes involved in addressing the feeding challenges of children ... more 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 were from semi-structured interviews with 11 mothers of 12 children with ASD ranging from 4-11 years. This grounded theory study used constant comparative analysis in developing categories to define the processes mothers used in understanding and then meeting the feeding needs of their children with ASD. Four feeding processes emerged from the analysis. 1) recognizing the feeding challenges, 2) defining the underlying nature of the feeding challenges, 3) seeking support for and validation of the feeding challenges, and 4) staging their approach. The feeding challenges had three different patterns of onset and went beyond typical picky eating behaviors.

Research paper thumbnail of Quality Assurance: The Current Challenge

Canadian Journal of Occupational Therapy, 1990

Occupational therapists are being challenged to measure and evaluate the care provided to their p... more Occupational therapists are being challenged to measure and evaluate the care provided to their patients. This paper discusses the various stages of development of a quality assurance program within a large pediatric occupational therapy department. Several quality assurance activities undertaken are described, including the development of standards of clinical practice (based on the “Guidelines for the Client-Centred Practice of Occupational Therapy”) and the development of assessment and documentation protocols. Outcome measurement in pediatric occupational therapy is addressed in relationship to the process measures which were developed in the department. The approaches to outcome measurement are outlined within the context of an audit attempting to evaluate the effectiveness of occupational therapy intervention based on five areas of evaluation.

Research paper thumbnail of Feeding a Child with Autism Spectrum Disorder: Mothers' Strategies and Beliefs

Background: From the moment of their child’s birth, mothers commence the intricate dance of respo... more 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 feeding challenges is greater than in typically- developing peers (Schreck, Williams, & Smith, 2004). While the descriptive studies have provided information on the types of feeding challenges for children with ASD, there is no research investigating how feeding challenges develop, change over time, and what mothers do to ensure that their children with ASD have adequate nutrition. Objectives: The research questions are: For mothers, what is the process of feeding their children with ASD from infancy to school age? What challenges do the mothers face? What strategies have been used? How successful were these strategies? Methods: This study used ...

Research paper thumbnail of An Evaluation of the Decision-Making Capacity Assessment Model

Canadian Geriatrics Journal, 2016

Research paper thumbnail of Timelines for returning to physical activity following pediatric spinal surgery: recommendations from the literature and preliminary data

BMC Research Notes, Apr 29, 2021

Research paper thumbnail of Mothers feeding their children with autism spectrum disorder: achieving a tenuous balance

This thesis is dedicated to my husband and best friend Neil Mitchell Rogers who has walked every ... more This thesis is dedicated to my husband and best friend Neil Mitchell Rogers who has walked every step of the way with me and supported me in this incredible journey.

Research paper thumbnail of Mothers’ Challenges in Feeding their Children with Autism Spectrum Disorder—Managing More Than Just Picky Eating

Journal of Developmental and Physical Disabilities, Aug 18, 2011

Mothers' perspectives of the processes involved in addressing the feeding challenges of children ... more 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 were from semi-structured interviews with 11 mothers of 12 children with ASD ranging from 4-11 years. This grounded theory study used constant comparative analysis in developing categories to define the processes mothers used in understanding and then meeting the feeding needs of their children with ASD. Four feeding processes emerged from the analysis. 1) recognizing the feeding challenges, 2) defining the underlying nature of the feeding challenges, 3) seeking support for and validation of the feeding challenges, and 4) staging their approach. The feeding challenges had three different patterns of onset and went beyond typical picky eating behaviors.

Research paper thumbnail of Abstract 19104: The Relationship of Parent Well-Being, Family Management, and Service Utilization in Families of Children With Hypoplastic Left Heart Syndrome From the Perspective of Mothers and Fathers

Circulation, Nov 26, 2013

Background: Given the prevelance of neurodevelopmental impairments in children with hypoplastic l... more Background: Given the prevelance of neurodevelopmental impairments in children with hypoplastic left heart syndrome (HLHS), and recommendations that they have early intervention, parents’ patterns of service utilization for their at-risk child warrants investigation. The purpose of this study was to (1) delineate parent, child, and family needs from the perspective of parents, and (2) identify the services and resources used and needed by parents to support themselves, their children, and their family. Method: Descriptive study employing the Family Management Measure (FaMM), Connor-Davison Resilience Scale (CD-RISC), Parenting Stress Index (PSI), Vineland Adaptive Behaviour Scales (VABS) and Education and Rehabilitation Services Questionnaire (ERSQ). Findings: Questionnaires were sent to 64 families. Thirty-four parents, 21 mothers and 13 fathers, from 22 families returned questionnaires ( 38% response rate). Mean age of the children was 4.81 years (range 13 months to 15 years). There was no significant difference between the resilience of mothers and fathers, with 5/32 (19%) scoring in the post-traumatic stress category. For parenting stress, 10 of 30 (33%) of parents scored in the clinically significant range. Ten of 24 (41%) parents fell into the problematic family management category. Half of the children on the Vineland had typical or above average mean scores. Four of the 22 children living with severe morbidities were receiving education and rehabilitation services. Children with mild to moderate morbidities, including inattention, learning and behavior difficulties, progressive hearing loss and sensory issues, were not receiving adequate services. Minimal community-based services for parents were reported. Conclusion: The presence of an impairment such as HLHS does not predict service needs or outcomes from a functional perspective. Rather, persistent comorbidities have distinct meaning for each child, parent, and family. Therefore, when considering intervention for both the child and the parent, it is important to consider parents’ perceptions the child’s limitations and community participation and how these perceptions influence their parenting processes, especially related to service utilization.

Research paper thumbnail of A Typology of Transition Readiness for Adolescents with Congenital Heart Disease in Preparation for Transfer from Pediatric to Adult Care

Journal of Pediatric Nursing, Sep 1, 2021

PURPOSE To understand the effectiveness of a nurse-led transition intervention by analyzing quali... more 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 disease (CHD) had been randomized to a two-session transition intervention or usual care. Session 1 emphasized patient education including creation of a health passport and goal setting. Session 2, two months later, emphasized self-management. Qualitative data extracted from intervention logs, field notes and audio recordings of the sessions were analyzed for content and themes. RESULTS Data from 111 transition intervention sessions with 57 adolescents were analyzed. Creating a health passport, goal setting, and role-plays were the elements of the intervention most valued by participants. A typology of transition readiness was identified: 1) the independent adolescent (5%), already managing their own care; 2) the ready adolescent who was prepared for transition after completing the intervention (46%); 3) the follow-up needed adolescent who was still in need of extra coaching (26%), and 4) the at-risk adolescent who warranted immediate follow-up (14%). Baseline knowledge and transition surveys scores validated the typology. CONCLUSIONS A two-session nursing intervention met the transition needs of approximately half of adolescents with CHD. However, additional transition-focused care was needed by 40% of participants (groups 3 and 4). PRACTICE IMPLICATIONS These findings will guide pediatric nurses and other healthcare professionals to optimize an individualized approach for ensuring transition readiness for adolescents with CHD.

Research paper thumbnail of Parental Vigilance in Caring for Their Children with Hypoplastic Left Heart Syndrome

PubMed, Aug 19, 2015

Hypoplastic left heart syndrome (HLHS) is a complex heart malformation that requires life-saving ... more 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 by exaggerated vigilant parental action, and if so, how does this influence parental response? Situated within a larger program of pediatric cardiology research, this study included data from two grounded theory studies with parents of children with HLHS. This secondary analysis involved a thematic content analysis using sensitizing concepts of uncertainty, protectiveness, support, and mastery of complex care. Transcribed data from 55 interviews with 24 mothers and 17 fathers of young children with HLHS were analyzed for relevant and recurring themes. In mastering skills required to care for their child with HLHS, parents contrasted what was in their hands with what was out of their hands. Vigilant parental actions were evident as parents became skilled at providing complex care. Parents said they were sometimes excessive in their vigilant actions. In retrospect they viewed this vigilance as appropriate in some situations but exaggerated in other situations. Understanding parents' vigilant actions in response to their child's complex care can guide health care providers' interactions with families. Long-term follow up, both clinically and through research, is needed to assess the long-term consequences of exaggerated vigilant parental action on the child, parent, and family, and to determine and evaluate appropriate and timely intervention.

Research paper thumbnail of Facets of Parenting a Child with Hypoplastic Left Heart Syndrome

Nursing Research and Practice, 2012

The purpose of the study was to conceptualize the needs of parents of young children with hypopla... more 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 HLHS. Analysis of recorded and transcribed single interviews with each participant was done as directed by interpretive description methodology. A model of five facets of parenting was conceptualized. These included survival parenting, "hands-off " parenting, expert parenting, uncertain parenting, and supported parenting. The facets of parenting delineated through this study provide a theoretical framework that can be used to guide the development and evaluation of interventions for parents of children with complex congenital heart disease and potentially other life-threatening conditions. Each facet constitutes a critical component for educational or psychosocial intervention for parents.

Research paper thumbnail of The Process of Family Management When a Baby Is Diagnosed With a Lethal Congenital Condition

Journal of Family Nursing, Jan 5, 2012

The Family Management Style Framework (FMSF) was used as a conceptual basis for secondary data an... more 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 dimensions identified in prior research of family response to childhood chronic conditions. Results indicated that application of the FMSF was helpful in differentiating families and their processes of family management at the onset of their infant’s illness through to surviving the first surgery and going home. The dimensions of Illness View and Child Identity were central to the parents’ capacity to manage their baby’s illness demands within their family context. Applying a robust family framework to a complex neonatal condition at illness onset provides compelling direction for clinical interventions and their rigorous evaluation.

Research paper thumbnail of Parenting under Pressure: a grounded theory of parenting young children with life-threatening congenital heart disease

Journal of Advanced Nursing, May 22, 2012

rempel g.r., ravindran v., rogers l.g. & magill‐evans j. (2013) Parenting under pressure:... more rempel g.r., ravindran v., rogers l.g. & magill‐evans j. (2013) Parenting under pressure: a grounded theory of parenting young children with life‐threatening congenital heart disease. Journal of Advanced Nursing69(3), 619–630. doi: 10.1111/j.1365‐2648.2012.06044.xAim. 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 undergo staged surgical palliation. These children, however, are at risk for life‐threatening complications and parents are charged with the responsibility to monitor their children at home with minimal support and guidance from healthcare professionals once home.Design. A constructivist grounded theory study.Method. The study was conducted in 2006–2008. Participants were 25 parents (15 mothers, 10 fathers) and 28 grandparents (17 grandmothers, 11 grandfathers) of 15 young children (6 months–4·5 years) who had undergone the Sano surgical approach for hypoplastic left heart syndrome. The 53 interviews were digitally recorded, transcribed and analysed using open and focused coding, constant comparative analysis and memoing.Findings. A process of Parenting under Pressure emerged that was characterized by four overlapping and re‐emerging phases: (1) realizing and adjusting to the inconceivable; (2) growing increasingly attached; (3) watching for and accommodating the unexpected; and (4) encountering new challenges.Conclusions. In‐depth understanding of the phases of Parenting under Pressure provides direction for nurses to support parents of children who survive hypoplastic left heart syndrome. Interventions that help carers of children with complex health conditions move through the phases of our Parenting under Pressure process may help them safeguard the survival of their children, and their own survival as parents as they manage multiple demands.

Research paper thumbnail of Research conversations with children and adolescents: Development and use of comprehensive interview guidelines

Research paper thumbnail of Meeting the Needs of Parents of Children With Scoliosis: A Qualitative Descriptive Study

Global Qualitative Nursing Research, 2021

Needs of parents with children with scoliosis are complex and depend on their child’s treatments.... more Needs of parents with children with scoliosis are complex and depend on their child’s treatments. The purpose of this study was to identify needs of parents with children with scoliosis. This qualitative description involved interviews with parents of children at various stages of treatment. A convenience, then purposeful sample of 16 parents (12 mothers, two fathers, and two stepfathers) was interviewed; interviews were transcribed and analyzed using thematic analysis. Parents’ needs included: Needing reliable medical information; Desiring information on complementary treatments; Wanting help in supporting and advocating for their child; Needing to protect the child and family; and Seeking connection and support. Although many parents’ needs are being met, this study recommends a nursing role aimed at providing parents with reliable medical information, discussing alternative treatments, assisting parents in their role of supporting their child, helping parents in their advocacy ef...

Research paper thumbnail of Research conversations with children and adolescents: Development and use of comprehensive interview guidelines

Five sources of methodological data: the interview recordings, transcribed interviews, interviewe... more Five sources of methodological data: the interview recordings, transcribed interviews, interviewer’s pre and post field notes, interviewer reflective journals, and team meeting notes.

Research paper thumbnail of Beyond the Interview Guide: Experiences of Practically and Mindfully Implementing Interview Guidelines When Conducting Research With Children and Adolescents With Chronic Conditions and Their Siblings

International Journal of Qualitative Methods

Children and adolescents who live with chronic conditions are rarely participants in research spe... more 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 children and adolescents’ control of and comfort with interviewing and to maximize the caliber of ethically co-constructed data. We developed, tested, and revised these guidelines with 80 children and adolescents aged 5 to 17 years: 27 with complex Congenital Heart Disease (CCHD) (5–17 years) and 13 with Early Onset Scoliosis (5–12 years) and 28 siblings (7–17 years). The guidelines were further tested with 12 adolescents with Adolescent Idiopathic Scoliosis (10–16 years) and 10 children and adolescents with CCHD (8–12 years). The children and adolescents recounted stories about their everyday life and activities through digitally recorded fac...

Research paper thumbnail of Alberta Centre for Child, Family & Community Research (ACCFCR) "There is so much more to a child than their heart" Supports and Services for Children with Complex Congenital Heart Disease and Their Parents FINAL REPORT

The Family Resilience Study was initiated based on increasing concern that children who have surv... more 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 rehabilitation and educational support services, and financial support systems for children with disabilities and their parents/families, there has been a mismatch between these services and the needs of children with complex congenital heart disease (CHD). The medical needs of these children, who undergo three major heart surgeries, endure prolonged hospitalizations and repeated invasive procedures, understandably need to trump their developmental needs in the early years. By school entry, not only are some of these children having difficulty learning, they are also experiencing emotional and behavioural challenges. Gaining in-depth unde...

Research paper thumbnail of Facets of Parenting a Child with Hypoplastic Left Heart Syndrome

Nursing Research and Practice, 2012

The purpose of the study was to conceptualize the needs of parents of young children with hypopla... more 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 HLHS. Analysis of recorded and transcribed single interviews with each participant was done as directed by interpretive description methodology. A model of five facets of parenting was conceptualized. These included survival parenting, “hands-off” parenting, expert parenting, uncertain parenting, and supported parenting. The facets of parenting delineated through this study provide a theoretical framework that can be used to guide the development and evaluation of interventions for parents of children with complex congenital heart disease and potentially other life-threatening conditions. Each facet constitutes a critical component for educational...

Research paper thumbnail of The Process of Family Management When a Baby Is Diagnosed With a Lethal Congenital Condition

Journal of Family Nursing, 2012

The Family Management Style Framework (FMSF) was used as a conceptual basis for secondary data an... more 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 dimensions identified in prior research of family response to childhood chronic conditions. Results indicated that application of the FMSF was helpful in differentiating families and their processes of family management at the onset of their infant’s illness through to surviving the first surgery and going home. The dimensions of Illness View and Child Identity were central to the parents’ capacity to manage their baby’s illness demands within their family context. Applying a robust family framework to a complex neonatal condition at illness onset provides compelling direction for clinical interventions and their rigorous evaluation.

Research paper thumbnail of Mothers’ Challenges in Feeding their Children with Autism Spectrum Disorder—Managing More Than Just Picky Eating

Journal of Developmental and Physical Disabilities, 2011

Mothers' perspectives of the processes involved in addressing the feeding challenges of children ... more 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 were from semi-structured interviews with 11 mothers of 12 children with ASD ranging from 4-11 years. This grounded theory study used constant comparative analysis in developing categories to define the processes mothers used in understanding and then meeting the feeding needs of their children with ASD. Four feeding processes emerged from the analysis. 1) recognizing the feeding challenges, 2) defining the underlying nature of the feeding challenges, 3) seeking support for and validation of the feeding challenges, and 4) staging their approach. The feeding challenges had three different patterns of onset and went beyond typical picky eating behaviors.

Research paper thumbnail of Quality Assurance: The Current Challenge

Canadian Journal of Occupational Therapy, 1990

Occupational therapists are being challenged to measure and evaluate the care provided to their p... more Occupational therapists are being challenged to measure and evaluate the care provided to their patients. This paper discusses the various stages of development of a quality assurance program within a large pediatric occupational therapy department. Several quality assurance activities undertaken are described, including the development of standards of clinical practice (based on the “Guidelines for the Client-Centred Practice of Occupational Therapy”) and the development of assessment and documentation protocols. Outcome measurement in pediatric occupational therapy is addressed in relationship to the process measures which were developed in the department. The approaches to outcome measurement are outlined within the context of an audit attempting to evaluate the effectiveness of occupational therapy intervention based on five areas of evaluation.

Research paper thumbnail of Feeding a Child with Autism Spectrum Disorder: Mothers' Strategies and Beliefs

Background: From the moment of their child’s birth, mothers commence the intricate dance of respo... more 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 feeding challenges is greater than in typically- developing peers (Schreck, Williams, & Smith, 2004). While the descriptive studies have provided information on the types of feeding challenges for children with ASD, there is no research investigating how feeding challenges develop, change over time, and what mothers do to ensure that their children with ASD have adequate nutrition. Objectives: The research questions are: For mothers, what is the process of feeding their children with ASD from infancy to school age? What challenges do the mothers face? What strategies have been used? How successful were these strategies? Methods: This study used ...

Research paper thumbnail of An Evaluation of the Decision-Making Capacity Assessment Model

Canadian Geriatrics Journal, 2016