Parents' Journeys of Mastery and Knowledge Construction After Their Infant's First Stage of Surgery for Complex Congenital Heart Disease.

BACKGROUND: A growing body of conceptual evidence over the last decade has increased our understanding of parents' experiences of having an infant with complex congenital heart disease. These concepts include parents' feelings of uncertainty, fear, excitement, and mastery. However, little is known about parents' experiences, confidence, and knowledge acquisition during transition from hospital to home with their infant after the first stage of complex cardiac surgery. A theoretical framework to assess, plan and implement child and family centered care would assist children's cardiac nurses responsible for parental education, discharge planning and coordination. AIM: To explore parents' experiences of the transition from hospital to home with their infant, following the first stage of cardiac surgery. DESIGN: A prospective mixed methods longitudinal design. Semi-structured interviews were undertaken, including administration of the Maternal Confidence Questionnaire at four timepoints: before discharge following stage one cardiac surgery (T0), 2 weeks' post discharge (T1), 8 weeks' post discharge (T2) and after stage two surgery (T3). Qualitative data were thematically analyzed. Descriptive statistics were used to characterize the sample and non-parametric repeated measures analysis of variance was used to analyze changes over time in maternal confidence scores. RESULTS: Sixteen parents of 12 infants participated. Four "patterns of transition experience" emerged, the fourth "Mastery", is discussed in this paper. Mastery can be contextualized in terms of the parents' journeys of knowledge construction, gaining confidence and reflection. Learning was dynamic and transformational, but successful learning and acquisition of knowledge was also dependent upon the parents' ability to absorb, integrate and adjust at any given time. Confidence at T0 was significantly lower than at T1 (p = .011), T2 (p = .018) and T3 (p = .012). There were no significant differences between scores at T1, T2 and T3. Liminality, as a concept, described the between and betwixt time that parents experienced as they were preparing for discharge from hospital; excitement to be going home balanced with the fear of being alone and confidence in looking after their fragile infant. CONCLUSION: Parents of infants with complex congenital heart disease obtain knowledge, confidence, and mastery dependent upon their transition experience and their personal journey through pre-liminal, liminal, and post-liminal phases of discharge from hospital to home. A conceptual framework "Parenting through Transitions - hospital to home" emerged that could assist in structuring assessment of parents' knowledge and support needs within a coordinated discharge process. Identifying individualized support would promote adaptation and adjustment during transition from the pre to post liminal phase, following their infant's first stage of complex cardiac surgery.

Parents learning was dynamic and transformational, learning opportunities overlapped transitional phases of their infant's journey, but successful learning and acquisition of knowledge was also dependent upon the parents' ability to absorb, integrate and adjust at any given time.The transition from hospital to home and traversing the physical boundary of leaving the hospital for the first time with their infant (liminal phase), was loaded with emotionally traumatic experiences that could not be separated from the transition that was being explored within this study.Adjusting to the new situation, developing confidence over time, and becoming comfortable as they mastered new skills, demonstrated that some of these parents could pass through that liminal space to mastery of a new normal (post-liminal phase), which encompassed competence, integration, and comfort.

Exploring the implementation of key nursing roles in children's cardiac services.

BACKGROUND: Children's cardiac nursing roles have changed over the past decade. Royal College of Nursing (RCN) guidance and NHS England standards have been published with the aim of standardising and enhancing nursing care for children and young people with congenital heart disease (CHD) and their families. AIM: To explore the breath of implementation of key nursing roles in children's cardiac services across the UK and Ireland and to determine whether the roles met the RCN guidance and the NHS England standards. METHOD: A cross-sectional survey design was used. The 150 members of the Congenital Cardiac Nurses Association (CCNA) were invited via email to participate and were sent a link to an online survey. FINDINGS: Of the 150 potential respondents, 31 completed the survey. Overall, respondents believed that the RCN guidance had been implemented effectively and that children's cardiac nursing roles matched the RCN's example job descriptions. Respondents' comments suggested that implementation of the NHS England standards had been challenging and that progress in setting up key roles such as lead nurse, cardiac nurse educator and children's cardiac nurse specialist had been slow. Respondents felt that political and financial factors adversely affected recruitment. CONCLUSION: Since publication of the NHS England standards there has been some progress in the implementation, in children's cardiac services, of key nursing roles such as lead nurse and innovative nursing roles such as advanced nurse practitioner and research nurse. The findings of this study have informed the latest edition of the RCN guidance, which now includes the role of senior research nurse.

An improved congenital heart assessment tool: a quality improvement outcome.

BACKGROUND: CHD was the most prevalent congenital anomaly (60.9 per 10,000, 95% CI 59.0-62.8) in England in 2018, with 1767 babies born with severe cardiac defects. The 30-day survival rates for complex procedures continue to improve; however despite care advances, the early post-operative period and first year of life remain a critical time for these infants. The Congenital Heart Assessment Tool was developed to support parental decision-making, standardise care provision, improve communication, and the safety and quality of care. AIM: To further evaluate the Congenital Heart Assessment Tool. DESIGN: A four centre collaborative mixed-methods quality improvement project funded by The Health Foundation, involving eight phases conducted during 2016-2018. Phases six to eight (clinical simulation exercise, parent workshop, and updated tool) are reported in this paper. RESULTS: Four themes emerged from the clinical simulation exercise (phase six) including: improving documentation; preparation of parents; preparation of health care professionals; and communication. One main theme emerged from the parent workshop (phase seven): "what parents know versus what professionals know [about CHD]". CONCLUSION: These phases further validated the effectiveness of the CHATm in terms of triggering amber and red indicators and demonstrated parents' ability to identify deterioration in their infant's clinical condition. Recommendations arising from the quality improvement project enabled the project team to create an updated version of the Congenital Heart Assessment Tool, CHAT2.

Evaluating the congenital heart assessment tool: a quality improvement project.

BACKGROUND: An early warning tool, the Congenital Heart Assessment Tool (CHAT), was designed in 2012 to support parental preparation before discharge, enhancing understanding of their infant's complex CHD, the signs of deterioration to look out for and to support decision-making at home. Acceptability and feasibility of the tool were tested during 2013-2015 in a single centre. AIM OF THIS PROJECT: To evaluate the wider implementation across four children's cardiac centres of the CHAT for infants with complex CHD in the community setting. DESIGN: A four-centre collaborative mixed-methods quality improvement project funded by The Health Foundation, during 2016-2018. A plan, do, study, act cycle of improvement was employed. This article reports on the planning phases, creation of a modified tool (CHATm); and the implementation phases, including retrospective case note review using CHATm; tabletop simulation exercise using CHATm and clinical implementation of CHATm. RESULTS: Key findings included the benefit of using CHATm simulation for practitioners; the effectiveness of CHATm in predicting amber and red triggers, indicating parental actions and escalation of concerns to professionals. Parents using CHATm found it enhanced knowledge in preparation for going home, supported decision-making, and discussions with health care professionals. CONCLUSION: Using the CHATm clinically identified the need to develop a structured model of assessment of parental suitability for home-monitoring programmes. A robust and nationally agreed training programme for all staff using CHATm was recommended to ensure successful and complete implementation in practice.

Parents' Experiences of Transition From Hospital to Home After Their Infant's First-Stage Cardiac Surgery: Psychological, Physical, Physiological, and Financial Survival.

BACKGROUND: The intersurgical stage is a critical time for fragile infants with complex congenital heart disease, but little is known about the impact on parents. OBJECTIVE: The aim of this study was to explore parents' experiences of the transition from hospital to home with their infant after stage 1 cardiac surgery for complex congenital heart disease. METHOD: This is a prospective, longitudinal, mixed methods feasibility study using semistructured interviews and self-report instruments at 4 time points: before discharge (baseline), 2 weeks post discharge, 8 weeks post discharge, and after stage 2 surgery. Qualitative data were analyzed thematically; and quantitative data, descriptively. RESULTS: Sixteen parents of 12 infants participated. All parents described signs of acute stress disorder; 4 parents described symptoms of posttraumatic stress disorder before discharge. Parents' fear and uncertainty about going home were multifaceted, underpinned by exposure to numerous traumatic events. By 8 weeks post discharge, parents' feelings and emotions were positive, relieved, and relaxed. Mean generalized anxiety and depression scores were higher before discharge; most individual anxiety and depression scores decreased over time. Physiological survival included self-care needs, such as eating and sleeping properly. Physical survival included preparation of the home environment and home alterations adapting to their infant's equipment needs. Financial survival was a burden, particularly for those unable to return to work. CONCLUSION: Patterns of experience in surviving the transition included psychological, physical, physiological, and financial factors. Authors of further longitudinal research could test the effectiveness of psychological preparation interventions, while encouraging early consideration of the other factors influencing parents' care of their infant after discharge from hospital.

Care of infants, children and adults with congenital heart disease.

Congenital heart disease refers to an anatomical or physiological defect of the heart that is present at birth. Over the past three decades there have been significant advances in surgical, medical and nursing care for infants and children requiring cardiac surgery for congenital heart disease. This has meant that the number of adults with moderate and complex congenital heart disease now exceeds the number of children with the disease. This article details the background and diagnosis of congenital heart disease. It considers the implications for infants and children with congenital heart disease, as well as their parents, such as screening methods, risk factors, parental stress and psychosocial needs. This article also discusses the care of adults with congenital heart disease, including specialist monitoring and patient education.

Parents' experiences of receiving an antenatal versus postnatal diagnosis of complex congenital heart disease.

BACKGROUND: The time point at which parents receive a diagnosis of congenital heart disease (CHD) has changed over the years due in part to advances in fetal ultrasound. However, CHD remains undiscovered until after birth in some cases. The psychological effect of time of diagnosis on parents' experiences has not been well researched. AIM: To explore parents' experiences at the time of diagnosis of complex CHD and to compare if experiences differ when receiving an antenatal versus postnatal diagnosis. METHOD: Descriptive and thematic analysis of primary mixed qualitative and quantitative data, collected in 2012-2013, from an online survey of parents ( n =22) whose infants had undergone stage one surgery for a functionally univentricular heart. FINDINGS: Four themes emerged: parents' understanding of the condition at the time of diagnosis; parents' emotions at the time of diagnosis; sources of support at the time of diagnosis; and additional sources of information after the diagnosis. CONCLUSION: There are implications for practice in terms of who provides the diagnosis and, more importantly, how well it is explained. Professionals need to assess parents' emotional status, information needs and level of understanding irrespective of time of diagnosis, so that support is individualised, sensitive and time appropriate.

Acceptability of a parental early warning tool for parents of infants with complex congenital heart disease: a qualitative feasibility study.

AIM: To explore the acceptability and feasibility of a parental early warning tool, called the Congenital Heart Assessment Tool (CHAT), for parents going home with their infant between first and second stage of surgery for complex congenital heart disease. BACKGROUND: Home monitoring programmes were developed to aid early recognition of deterioration in fragile infants between first and second surgical stage. However, this necessitates good discharge preparation to enable parents to develop appropriate knowledge and understanding of signs of deterioration to look for and who to contact. DESIGN: This was a longitudinal qualitative feasibility study, within a constructivist paradigm. Parents were taught how to use the CHAT before taking their infant home and asked to participate in semistructured interviews at four time points: before discharge (T0), 2 weeks after discharge (T1), 8 weeks after discharge (T2) and after stage 2 surgery (T3). Interviews were transcribed verbatim and thematically analysed. SETTING: One tertiary children's cardiac centre in the UK. SUBJECTS: Twelve parents of eight infants who were discharged following first stage cardiac surgery for complex congenital heart disease, between August 2013 and February 2015. RESULTS: Four main themes emerged: (1) parental preparation and vigilance, (2) usability, (3) mastery, and (4) reassurance and support. CONCLUSIONS: The study highlighted the benefit of appropriately preparing parents before discharge, using the CHAT, to enable identification of normal infant behaviour and to detect signs of clinical deterioration. The study also demonstrated the importance of providing parents with information about when and who to call for management advice and support.

Patterns of Transition Experience for Parents Going Home from Hospital with their Infant after First Stage Surgery for Complex Congenital Heart Disease.

PURPOSE: The purpose of this study was to explore parents' experiences of one specific timepoint in their infant's journey: the transition from hospital to home, following the first stage of their infant's cardiac surgery for complex congenital heart disease. DESIGN AND METHODS: A prospective longitudinal mixed methods study, underpinned with Middle Range Transition Theory (Meleis, Sawyer, Im, Hilfinger Messias, & Schumacher, 2000). Face to face and telephone interviews were conducted and self-report forms completed by parents at four-time points: before discharge (T0), 2weeks after discharge (T1), 8weeks after discharge (T2) and after stage two surgery (T3). Interviews were transcribed verbatim before inductive thematic analysis. RESULTS: Parents were recruited over a 15-month period from 2013 to 2015. Twelve mothers and 4 fathers took part. The infants had functionally univentricular heart (left n=10, right n=1) and a systemic shunt dependent lesion, tetralogy of Fallot (n=1). Dynamic constructivist and constructionist social processes occurred for all parents, involving physical, physiological, psychological and cognitive elements within four 'patterns of experience', two of which 'safety and security' and 'love and support' are presented in this paper. IMPLICATIONS: Parental support is essential; parents need to be engaged in discharge planning process and given the opportunity to express their needs to ensure that discharge care is truly patient and family centered. CONCLUSIONS: Transition from hospital to home was complex and multi-faceted, with unanticipated physical and emotional transitions superimposed upon those that were expected.

Parents' preparedness for their infants' discharge following first-stage cardiac surgery: development of a parental early warning tool.

UNLABELLED: Aim The aim of this study was to explore parental preparedness for discharge and their experiences of going home with their infant after the first-stage surgery for a functionally univentricular heart. BACKGROUND: Technological advances worldwide have improved outcomes for infants with a functionally univentricular heart over the last 3 decades; however, concern remains regarding mortality in the period between the first and second stages of surgery. The implementation of home monitoring programmes for this group of infants has improved this initial inter-stage survival; however, little is known about parents' experiences of going home, their preparedness for discharge, and parents' recognition of deterioration in their fragile infant. METHOD: This study was conducted in 2011-2013; eight sets of parents were consulted in the research planning stage in September, 2011, and 22 parents with children aged 0-2 years responded to an online survey during November, 2012-March, 2013. Description of categorical data and deductive thematic analysis of the open-ended questions were undertaken. RESULTS: Not all parents were taught signs of deterioration or given written information specific to their baby. The following three themes emerged from the qualitative data: mixed emotions about going home, knowledge and preparedness, and support systems. CONCLUSIONS: Parents are not adequately prepared for discharge and are not well equipped to recognise deterioration in their child. There is a role for greater parental education through development of an early warning tool to address the gap in parents' understanding of signs of deterioration, enabling appropriate contact and earlier management by clinicians.

Recognition and management of asthma in children and young people.

Asthma is a common childhood disorder that has global significance. Developing an understanding of the aetiology, effects, diagnosis and management of the disorder enables healthcare practitioners to reduce the physical, psychological and social effects of asthma on children, families and healthcare systems. This article refers to the Scottish Intercollegiate Guidelines Network and British Thoracic Society guideline on the management of asthma, and enables the reader to incorporate this guidance into their practice.