Search

There is evidence that childhood adversity is correlated with poor health outcomes across the lifespan. Resilience results when internal and external protective factors in childhood mitigate this relationship. However, among children on the autism spectrum, these relationships are understudied, and little is known about the characteristics and role of adversity and resilience in their in their lives. This study interprets these phenomena as experienced by autistic young adults. Initially, we conducted community engagement with five members of the autism community who advised on the research question, research design, and analysis. Subsequently, four autistic young adults, three women and one non-binary, aged 19–27, were recruited to participate in semi-structured interviews via phone, video conference, and online chat. Credibility checking interviews followed data analysis. Through interpretative phenomenological analysis we identified themes related to the negative effects of adversity, including social disconnection, mental and emotional well-being, sense of self, and development into young adulthood. Resilience developed in places of refuge and identity and was evident in their transitions into young adulthood. These findings provide direction for decreasing adversity and fostering resilience in children and adolescents on the autism spectrum. [ABSTRACT FROM AUTHOR]

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 ignored. There is a growing trend toward ethical autism-related research, however, in which the perspectives of all stakeholders, particularly those of autistic individuals, are sought and their expertise on autism is foregrounded. In a study exploring the experiences of childhood adversity and resilience among autistic adults, we strove to conduct our research in an inclusive and ethical way, by integrating participatory methods, such as community engagement to inform research design, and credibility checking with participants to confirm that the analysis resonated with their experiences. Five stakeholders, representing parents of children on the autism spectrum, professionals, and autistic community members were recruited to provide input into the research design and provide insight into autistic ways of communicating, interacting, and being. The recommendations generated through this community engagement were then integrated into an interpretative phenomenological analysis (IPA) framework and implemented with four adult autistic participants. Through reflection on the process of community engagement, development of research design, implementation of the study, and credibility checking, it is clear that incorporating participatory methods into IPA increases rigor and ensures that autistic perspectives are represented through research. [ABSTRACT FROM AUTHOR]

Aim: To synthesise qualitative research on pulmonary sequelae of COVID‐19 and identify patient needs and experiences to develop nursing care strategies. Background: Qualitative research on long COVID by subtype has not yet occurred. As pulmonary sequelae constitute a serious long COVID subtype, exploring patient experience and needs can generate knowledge to guide nursing practice. Design: Systematised review methodology utilised on a purposive sample of published articles and reported using the PRISMA guidelines and checklists. Searched MEDLINE, Cumulative Index to Nursing and Allied Health, and Google Scholar, for English or French articles published from February 2020 to June 2022; qualitative research with adults recovering from COVID‐19 with evidence of pulmonary sequelae. Methods: Established principles for data extraction followed related to data reduction, data presentation, data comparison, and conclusion formulation and verification. Analysis was informed by Thorne's Interpretive Description and extended with Meleis' transitions theory, Mishel's uncertainty in illness theory and Moore et al.'s holistic theory of unpleasant symptoms. The quality of included studies was assessed Joanna Briggs Institute critical appraisal tool for qualitative research. Results: Four articles with six pooled participants provided data to yield three main themes: (1) a novel health‐illness transition, (2) lung injury and pulmonary fibrosis as antecedent to illness uncertainty, (3) and pulmonary symptoms that are compounded by fatigue and weakness. Conclusion: Pulmonary sequelae of COVID‐19 confers a unique health‐illness transition, uncertainties and symptoms that can be addressed by theory informed nursing practice. Relevance to Clinical Practice: Advocacy, optimising the nurse–patient relationship, offering up‐to‐date information and addressing uncertainty may help patients cope with pulmonary sequelae, a complex subtype of long COVID with important considerations for clinical nursing care. Despite a lack of evidence‐informed clinical pathways, nurses can support patients to understand novel treatments, support discharge planning and acknowledge the synergistic nature of pulmonary symptoms and fatigue to support health‐illness transitions. No Patient or Public Contribution: This article involved analysis of previously published works. [ABSTRACT FROM AUTHOR]

Background: There is little evidence regarding the efficacy of interventions to prepare adolescents with congenital heart disease (CHD) to enter adult care.Objectives: The goal of this study was to evaluate the impact of a nurse-led transition intervention on lapses between pediatric and adult care.Methods: A cluster randomized clinical trial was conducted of a nurse-led transition intervention for 16- to 17-year-olds with moderate or complex CHD versus usual care. The intervention group received two 1-h individualized sessions targeting CHD education and self-management skills. The primary outcome was excess time to adult CHD care, defined as the interval between the final pediatric and first adult cardiology appointments, minus the recommended time interval, analyzed by using Cox proportional hazards regression accounting for clustering. Secondary outcomes included scores on the MyHeart CHD knowledge survey and the Transition Readiness Assessment Questionnaire.Results: A total of 121 participants were randomized to receive the intervention (n = 58) or usual care (n = 63). At the recommended time of first adult appointment (excess time = 0), intervention participants were 1.8 times more likely to have their appointment within 1 month (95% confidence interval: 1.1 to 2.9; Cox regression, p = 0.018). This hazard increased with time; at an excess time of 6 months, intervention participants were 3.0 times more likely to have an appointment within 1 month (95% confidence interval: 1.1 to 8.3). The intervention group had higher scores at 1, 6, 12, and 18 months on the MyHeart knowledge survey (mixed models, p < 0.001) and the Transition Readiness Assessment Questionnaire self-management index (mixed models, p = 0.032).Conclusions: A nurse-led intervention reduced the likelihood of a delay in adult CHD care and improved CHD knowledge and self-management skills. (Congenital Heart Adolescents Participating in Transition Evaluation Research [CHAPTER 2]; NCT01723332). [ABSTRACT FROM AUTHOR]

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 middle income countries like India. Objectives: The aim of the study was to discover the process of parenting burn-injured children in India. The objective of this paper is to present one of the substantive processes ''Enduring the Blame'' that emerged from the data. Design: Constructivist grounded theory methodology was used to explore the experiences of parenting burn-injured children. Setting: The study was conducted through a tertiary hospital that provided advanced paediatric burn care in a town in South India. Setting: The study was conducted through a tertiary hospital that provided advanced paediatric burn care in a town in South India. Methods: Twenty-two semi structured individual or family interviews were conducted in Tamil over a period of one year. The interview started with an overview question and then was followed by trigger questions as the participants shared their experiences. Second interviews were conducted with three participants in three families for theoretical saturation purposes. Results: Mothers and fathers encountered blame from family members, health professionals, strangers, and their burn-injured children along the burn injury trajectory. They suffered double trauma of their child's burn and the blame. Parenting their burn-injured child involved a process of ''Enduring the Blame.'' Enduring the Blame included four stages: internalizing blame, submitting to blame, rising above blame, and avoiding blame. Conclusions: Encouraging and assisting parents in caring for their children instead of blaming is a vital component of paediatric burn care. Parents will benefit from ongoing assessment and psychological interventions that will provide emotional support. Studying the perceptions of health professionals and the burn-injured children will help in further clarification of blame related issues and developing a parenting theory. [ABSTRACT FROM AUTHOR]

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 for follow up. Using grounded theory methodology this study aimed to explore and discover the process of parenting children in India with burn injury. Semi-structured interviews with 22 family members of 12 burn-injured children and field notes yielded rich data. The analysis by open and focused coding and constant comparisons of participants’ accounts revealed a parenting process of embracing survival. For parents embracing survival involved (1) suffering the trauma along with their burn-injured child, (2) sustaining the survival of their child, and (3) shielding the child from stigma related to scarring and disfigurement. Parents perceived minimal support from health professionals and family members. Mothers and fathers formed a team and did their best for their burn-injured children. Assessing and meeting the needs of the parents and empowering parents to provide effective long term care are vital components of burn care. The health professionals’ perceptive on parenting burn-injured children need to be explored. [Copyright &y& Elsevier]

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 Nursing 69(3), 619-630. doi: 10.1111/j.1365-2648.2012.06044.x Abstract 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 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. [ABSTRACT FROM AUTHOR]

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 informthe 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. [ABSTRACT FROM AUTHOR]

This study described the role normalization played for parents related to their young children with hypoplastic left heart syndrome. The data source for this secondary analysis was 30 interviews with 16 parents. Three themes were identified: normalization, parental perception of child vulnerability, and optimistic appraisal. Parents engaged in a balancing act between worrying about their children's vulnerability and marveling at their children's survival, using normalization as a coping strategy. Nurses can collaborate with parents to determine strategies to restore a sense of normalcy to simultaneously promote child independence and parent well-being. [ABSTRACT FROM AUTHOR]

Aim. This paper is a report of a study of the process of grandparent involvement with siblings of preschool children with hypoplastic left heart syndrome. Background. 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 pregnancy, mental illness, addiction). Some research addresses grandparent involvement when their grandchild is ill. Grandparents' 'double concern' for both their adult children and their ill grandchildren is reported in the literature. In this paper, we describe a third concern for grandparents: the sibling(s) of their sick grandchild. Method. Individual interviews were conducted in 2007 with 15 grandparents of six preschool children with complex congenital heart disease. Open and selective coding, categorization, and theoretical memoing were used to analyse the data. Findings. 'Stepping in as needed' and 'safeguarding relationships' were identified as two core categories related to grandparenting siblings of children with heart disease. Grandparents stepped into a parent role with toddler and preschool-aged siblings by attending to their daily care routines, recreational and play times, and relational needs while parents were occupied with their sick and hospitalized infants. Grandparents' concerted efforts to sustain parent-child and child-sibling relationships were also striking. Conclusion. Our findings extend the concept of 'double concern' to 'triple concern', and direct a research and practice focus towards the unexplored roles and needs of grandparents and siblings in families whose young children have life-threatening illnesses. [ABSTRACT FROM AUTHOR]

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 rooted in clinical practice with families, as research tools they provide data that can enhance the researcher's understanding of family member experiences. In qualitative research of the supportive and nonsupportive interactions experienced by male family caregivers, the interactive use of genograms and ecomaps (a) facilitated increased understanding of social networks as a context for caregiving, (b) promoted a relational process between researcher and participant, and (c) uncovered findings such as unrealized potential in the participant's social network that may not be revealed with the use of the genogram or ecomap alone, or the noncomparative use of both. [ABSTRACT FROM AUTHOR]

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 experience parenting a child who survives this treatment. Constructivist grounded theory informed this Canadian study that involved multiple interactive interviews with 9 mothers and 7 fathers of children with hypoplastic left heart syndrome who were at various stages of treatment. Extraordinary parenting in a context of uncertainty was evident as parents simultaneously safeguarded their child's precarious survival as well as their own survival. As technologically advanced treatment contributes to the survival of children with complex health conditions, health care professionals must consider how to promote and support parenting strategies that benefit the new survivors of technology as well as their families. [ABSTRACT FROM AUTHOR]

Objectives: 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 have been evaluated. The objectives of this systematic review were to identify available instruments appropriate for measuring physiological and behavioral cues of pain, non-pain related distress, and adequacy of analgesia and sedation in mechanically ventilated pediatric patients, and evaluate these instruments in terms of their psychometric properties. Design: A systematic review of original and validation reports of objective instruments to measure pain and non-pain related distress, and adequacy of analgesia and sedation in mechanically ventilated PICU patients was undertaken. Data sources: A comprehensive search was conducted in 10 databases from January 1970 to June 2011. Reference lists of relevant articles were reviewed to identify additional articles. Review methods: Studies were included in the review if they met pre-established eligibility criteria. Two independent reviewers reviewed studies for inclusion, assessed quality, and extracted data. Results: Twenty-five articles were included, identifying 15 instruments. The instruments had different foci including: assessing pain, non-pain related distress, and sedation (n = 2); assessing pain exclusively (n = 4); assessing sedation exclusively (n = 7), assessing sedation in mechanically ventilated muscle relaxed PICU patients (n = 1); and assessing delirium in mechanically ventilated PICU patients (n = 1). The Comfort Scale demonstrated the greatest clinical utility in the assessment of pain, non-pain related distress, and sedation in mechanically ventilated pediatric patients. Modified FLACC and the MAPS are more appropriate, however, for the assessment of procedural pain and other brief painful events. More work is required on instruments for the assessment of distress in mechanically ventilated muscle relaxed PICU patients, and the assessment of delirium in PICU patients. Conclusions: This review provides essential information to guide PICU clinicians in choosing instruments to assess pain, non-pain related distress, and adequacy of analgesia and sedation in mechanically ventilated pediatric patients. Effective knowledge translation is essential in the implementation, adoption, and successful use of these instruments. [ABSTRACT FROM AUTHOR]

The authors successfully used the card sort data collection technique with 17 female family caregivers in a large ethnographic study of nonsupport. 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. Later, to address challenges for participants, they developed approaches to assist women in moving beyond their own experience, dealing with test anxiety, and anticipating an emotional response. To facilitate effective data collection, they made detailed arrangements in advance, collected "talk aloud" data that captured women's decisions, and maintained accurate records. The women felt validated in their caregiving roles, as the card statements reflected their experience and rich data was elicited. The card sort exercise contributed information about variability in the meaning of similar interactions for different women and a beginning understanding of the criteria women used to make decisions. [ABSTRACT FROM AUTHOR]

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 face-to-face interviews that were transcribed. Detailed field notes were recorded before and after the interview. Our Interview Guidelines address ethics, informed assent and consent, pre-interview planning, establishing trust, and engaging children and adolescents in research. Special attention is given to involving parents in pre-interview planning and disclosing sensitive information post interview. Involving children and adolescents as research participants to gain information from them, not only about them, will assist those in planning appropriate intervention research to meet the needs of children and adolescents living with chronic conditions and their siblings. [ABSTRACT FROM AUTHOR]

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-country variation in illness perceptions, (2) associations between patient characteristics and illness perceptions, and (3) associations between illness perceptions and patient-reported outcomes. Methods Our sample, taken from APPROACH-IS, consisted of 3258 adults with CHD from 15 different countries. Patients completed questionnaires on illness perceptions and patient-reported outcomes (i.e., quality of life, perceived health status, and symptoms of depression and anxiety). Patient characteristics included sex, age, marital status, educational level, employment status, CHD complexity, functional class, and ethnicity. Linear mixed models were applied. Results The inter-country variation in illness perceptions was generally small, yet patients from different countries differed in the extent to which they perceived their illness as chronic and worried about their illness. Patient characteristics that were linked to illness perceptions were sex, age, employment status, CHD complexity, functional class, and ethnicity. Higher scores on consequences, identity, and emotional representation, as well as lower scores on illness coherence and personal and treatment control, were associated with poorer patient-reported outcomes. Conclusions This study emphasizes that, in order to gain a deeper understanding of patients' functioning, health-care providers should focus not only on objective indicators of illness severity such as the complexity of the heart defect, but also on subjective illness experiences. [ABSTRACT FROM AUTHOR]

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 [ABSTRACT FROM AUTHOR]

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 this population. Methods: We conducted a clinical trial of 15-17 year olds with moderate or complex congenital heart disease (CHD) or cardiomyopathy. Participants were systematically allocated to either usual care (controls) or a 1 h nurse-led one-on-one teaching session about their heart. Allocation was determined by week of attendance in the cardiology clinic. The primary outcome was change in Transition Readiness Assessment Questionnaire (TRAQ) score at 6 months, possible scores ranging from 1 (low) to 5 (optimal). Cardiac knowledge (MyHeart score, range 0-100) was a secondary outcome. Analysis was intention to treat. Results: Of 58 participants (48% female), 52 had CHD and 6 had cardiomyopathy. 27 were allocated to the intervention group; 3 declined the intervention and received usual care. When comparing the intervention group with the usual care group at 6 months postintervention, the mean self-management TRAQ score was 3.59 (±0.83) vs 3.16 (±1.05), respectively (p=0.048, adjusted for baseline score); the mean selfadvocacy TRAQ score was 4.38 (±0.56) vs 4.01 (±0.95) (p=0.18) and the mean MyHeart score was 75% (±15) vs 61% (±25) ( p=0.019). Conclusions: A 1 h nurse-led transition intervention resulted in a significant improvement in selfmanagement and cardiac knowledge scores. An educational intervention should be routine for youth with congenital or acquired heart disease. [ABSTRACT FROM AUTHOR]

Background--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. Methods and Results--A writing group appointed by the American Heart Association reviewed the available literature pertaining to topics relevant to fetal cardiac medicine, including the diagnosis of congenital heart disease and arrhythmias, assessment of cardiac function and the cardiovascular system, and available treatment options. The American College of Cardiology/ American Heart Association classification of recommendations and level of evidence for practice guidelines were applied to the current practice of fetal cardiac medicine. Recommendations relating to the specifics of fetal diagnosis, including the timing of referral for study, indications for referral, and experience suggested for performance and interpretation of studies, are presented. The components of a fetal echocardiogram are described in detail, including descriptions of the assessment of cardiac anatomy, cardiac function, and rhythm. Complementary modalities for fetal cardiac assessment are reviewed, including the use of advanced ultrasound techniques, fetal magnetic resonance imaging, and fetal magnetocardiography and electrocardiography for rhythm assessment. Models for parental counseling and a discussion of parental stress and depression assessments are reviewed. Available fetal therapies, including medical management for arrhythmias or heart failure and closed or open intervention for diseases affecting the cardiovascular system such as twin-twin transfusion syndrome, lung masses, and vascular tumors, are highlighted. Catheter-based intervention strategies to prevent the progression of disease in utero are also discussed. Recommendations for delivery planning strategies for fetuses with congenital heart disease including models based on classification of disease severity and delivery room treatment will be highlighted. Outcome assessment is reviewed to show the benefit of prenatal diagnosis and management as they affect outcome for babies with congenital heart disease. Conclusions--Fetal cardiac medicine has evolved considerably over the past 2 decades, predominantly in response to advances in imaging technology and innovations in therapies. The diagnosis of cardiac disease in the fetus is mostly made with ultrasound; however, new technologies, including 3- and 4-dimensional echocardiography, magnetic resonance imaging, and fetal electrocardiography and magnetocardiography, are available. Medical and interventional treatments for select diseases and strategies for delivery room care enable stabilization of high-risk fetuses and contribute to improved outcomes. This statement highlights what is currently known and recommended on the basis of evidence and experience in the rapidly advancing and highly specialized field of fetal cardiac care. [ABSTRACT FROM AUTHOR]