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Born with a heart condition: The Clinical Implications of the Polyvagal Theory

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Abstract

Being born with a heart condition presents increased vulnerability to a number of psychosocial difficulties, including anxiety, depression, developmental delay, infant feeding & oral motor problems, which have previously been accounted for by secondary factors. Here, I propose Porges’ Poly Vagal Theory offers a more holistic account. Since the heart is central to our nervous system congenital cardiac anomalies may compromise Neuroception which could account for some of these psychosocial difficulties. This has implications across the lifespan providing strategies to optimise normal development of social & defensive behaviours & inform to therapeutic interventions, explored here drawing on psychological theories & personal experience. See: http://books.wwnorton.com/books/Clinical-Applications-of-the-Polyvagal-Theory/

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Objectives The importance of personalized and dignified care is increasingly being recognized in health care policy and practice. Despite the known impact of clothing on social identity and self‐expression, the impact of hospital clothing on patient well‐being has been widely overlooked. Patients are often required to wear hospital clothing, commonly a backless gown, during medical procedures and surgeries. The impact of wearing patient clothing on well‐being, during this time of vulnerability, was explored. Design A sequential multi‐method approach consisting of two studies. Methods Two studies were carried out to consider the impact of the hospital gown on well‐being among adults with and without chronic health conditions. The first study consisted of conducting in‐depth, semi‐structured interviews (n = 10) with adults living with a lifelong chronic health condition (congenital heart disease). The second study was a cross‐sectional online survey exploring adults' views (n = 928) and experiences of wearing the hospital gown. Results Qualitative analysis identified the following master themes: (1) symbolic embodiment of the ‘sick’ role, (2) relinquishing control to medical professionals, and (3) emotional and physical vulnerability. Quantitative analysis of the online survey data indicated that adults often reported wearing the hospital gown despite a lack of medical necessity. Its design was considered to be not fit for purpose and lacking in dignity. Conclusions The implications of these findings for health policy and practice are discussed, emphasizing the importance of challenging cultural norms in health care since dehumanizing aspects of care, as symbolically represented by the hospital gown, may adversely impact on patient well‐being. Statement of contribution What is already known • Getting dressed is a form of self‐expression, which contributes to the construction of social identity, yet few studies have explored the impact of wearing hospital clothing on patient well‐being. • The few studies on hospital clothing that exist suggest it is predominantly associated with feeling depersonalized, stigmatized, and devitalized, being in the ‘patient role’, low status, and a lack of control and privacy. • However, previous studies include a variety of hospital clothing including pyjamas (Edvardsson, 2009) and dressing gowns (Topo & Iltanen‐Tähkävuori, 2010), whereas in the United Kingdom, a 'one‐size‐fits‐all' backless gown, held together with ties at the back, is most commonly used. What this study adds • This study furthers understanding about the lived experience of wearing hospital clothing for people living with a chronic health condition (congenital heart disease) and without. • Wearing hospital clothing (most commonly the hospital gown) was associated with symbolic embodiment of the ‘sick’ role, relinquishing control to medical professionals, and emotional and physical vulnerability for people living with a chronic health condition. • Findings from a wider sample, drawn from the general population, suggest that the hospital gown is often being used despite a lack of medical necessity often leaving patients feeling exposed, self‐conscious, vulnerable, uncomfortable, cold, embarrassed, and disempowered. These findings are exacerbated for people living with a long‐term health condition and women. • Together, these studies suggest that the current design of the hospital gown is not fit for purpose and impacts negatively on patient well‐being.
Conference Paper
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Background: Despite recent drives to empower patients with person centred health care provisions, the institutionalised acceptance of the hospital gown persists. Research has yet to explore the impact of wearing the hospital gown on patients’ health, wellbeing and recovery. Methods: Two small scale studies were carried out to consider the impact of the hospital gown on wellbeing and recovery among adults with and without chronic health conditions. The first study consisted of conducting in-depth, semi-structured interviews (n = 10) with adults living with life-long chronic health conditions, which were audio-recorded, transcribed and thematic analysis was used to identify themes from the qualitative data. The second study was a cross-sectional, online survey exploring adults’ views (n = 200+) and experiences of the hospital gown. Expected results: Qualitative analysis identified the following master themes: (1) loss of ‘healthy’ identity, (2) symbolic embodiment of the ‘sick’ role, (3) relinquishing control to medical professionals, and (4) vulnerability, disempowerment and embarrassment. Quantitative analysis of the online survey data indicated that adults often reported wearing the hospital gown despite lack of medical necessity. Its design was considered to be not fit for purpose and lacking in dignity. Current stage of work: Completed qualitative data collection and preliminary analysis of data. Data collection for online survey is ongoing. Discussion: The implications of these findings are discussed, emphasising the importance of challenging cultural norms in healthcare since de-humanising aspects of care may contribute adversely impact wellbeing and recovery.
Article
Over the last few decades, medical and surgical advances have led to a growing population of individuals living with congenital heart disease. The challenges of this condition can reach beyond physical limitations to include anxiety, depression and post-traumatic stress disorder. To date, these psychological outcomes have been neglected; yet, they need not be inevitable. The factors contributing to these difficulties are considered here, drawing on current evidence and neuropsychological theories including the novel application of polyvagal theory. Suggestions for developing psychologically informed medical and social care to improve mental health, wellbeing and recovery and influence policy and training are proposed ( (See supplemental material for video abstract).
Article
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Findings in the literature are inconsistent on the impact of congenital heart disease (CHD) on the psychological and cognitive functioning of children and adolescents. The aim of the present study was to systematically review this empirical body of literature. We conducted a meta-analysis to review studies on behavior problems and cognitive functioning in CHD. Only older children and adolescents with CHD displayed an increased risk of overall, internalizing, and to a lesser extent externalizing behavior problems. In addition, patients with severe CHD exhibited lower cognitive functioning than patients with less severe CHD, specifically with respect to performance intelligence. Moreover, decreased cognitive functioning remained relatively stable across different age groups. Children with severe heart disease may benefit from interventions specifically targeting perceptual organizational abilities, such as visual-spatial abilities. Moreover, older children and adolescents with CHD may benefit from psychological interventions reducing anxiety symptoms and depression.
Article
Most infants born with congenital heart disease (CHD) are now expected to reach adulthood. However, adults with CHD of moderate or great complexity remain at elevated risk of heart failure, arrhythmias, additional surgeries and interventional procedures, and premature mortality. This creates a need for lifelong specialized cardiac care and leads to 2 sets of potential challenges: (1) the transition from pediatric to adult care and (2) the psychosocial implications of coping with a chronic and often life-shortening medical condition. Many adolescents struggle with the transition to adult care, and mood and anxiety disorders are not uncommon in the adult setting.
Article
Background: Cardiac rhythm devices are increasingly used in the pediatric population, although their impact on quality of life (QOL) is poorly understood. The purpose of this study was to compare (QOL) scores among pediatric device patients, healthy controls, and congenital heart disease (CHD) patients and determine the key drivers of QOL in pediatric device patients. Methods and results: Multicenter, cross-sectional study at 8 pediatric centers of subjects aged 8 to 18 years with either a pacemaker or defibrillator was carried out. Patient-parent pairs completed the Pediatric Quality of Life Inventory and Pediatric Cardiac Quality of Life Inventory. QOL outcomes in device patients were compared with healthy controls and patients with various forms of CHD. Structural equation modeling was used to test for differences in Pediatric Cardiac Quality of Life Inventory scores among (1) device type, (2) presence of CHD, and (3) hypothesized key drivers of QOL. One hundred seventy-three patient-parent pairs (40 defibrillators/133 pacemakers) were included. Compared with healthy controls, patients with devices and their parents reported significantly lower Pediatric Quality of Life Inventory scoring. Similarly, compared with patients with mild forms of CHD, parents and patients with devices reported significantly lower Pediatric Cardiac Quality of Life Inventory scores and were similar to patients with more severe CHD. Key drivers of patient QOL were presence of implantable cardioverter-defibrillator and CHD. For patients, self-perception was a key driver of lower QOL, whereas for parents behavioral issues were associated with lower QOL. Conclusions: Patient QOL is significantly affected by the presence of cardiac rhythm devices. Whether these effects can be mitigated through the use of psychotherapy needs to be assessed.
Article
In this paper, preterm infant massage therapy studies are reviewed. Massage therapy has led to weight gain in preterm infants when moderate pressure massage was provided. In studies on passive movement of the limbs, preterm infants also gained significantly more weight, and their bone density also increased. Research on ways of delivering the massage is also explored including using mothers versus therapists and the added effects of using oils. The use of mothers as therapists was effective in at least one study. The use of oils including coconut oil and safflower oil enhanced the average weight gain, and the transcutaneous absorption of oil also increased triglycerides. In addition, the use of synthetic oil increased vagal activity, which may indirectly contribute to weight gain. The weight gain was associated with shorter hospital stays and, thereby, significant hospital cost savings. Despite these benefits, preterm infant massage is only practiced in 38% of neonatal intensive care units. This may relate to the underlying mechanisms not being well understood. The increases noted in vagal activity, gastric motility, insulin and IGF-1 levels following moderate pressure massage are potential underlying mechanisms. However, those variables combined do not explain all of the variance in weight gain, highlighting the need for additional mechanism studies.
Article
The purpose of this study was to identify factors contributing to postoperative feeding difficulties in neonates following cardiac surgery. A retrospective cohort study used chart audit of 101 consecutive infants who underwent cardiac surgery. Ten variables were analyzed as possible predictors of postoperative feeding difficulties including: diagnosis, demographics, details of surgery, and postoperative course. At hospital discharge, 72 (71.3%) infants were orally feeding and 29 (28.7%) were not. Overall mean hospital length of stay was 17.73 (+ 16.40 days). Multivariate logistic regression analysis revealed vocal chord injury (odds ratio 11.80), length of postoperative intubation (odds ratio 1.10 per day), and weight at surgery (odds ratio 0.34) as independent predictors of failure to feed orally at discharge from hospital. Risk factors for feeding difficulties in the postcardiac surgery infant are vocal chord injury, prolonged intubation, and low weight at surgery. Early identification of neonates at risk for feeding difficulties may lead to development of strategies to reduce morbidity, improve patient care, and provide better resource utilization.
The Polyvagal Theory. Neurophysiological Foundations of Emotions, Attachment, Communication, Self Regulation
  • S W Porges
Porges, S.W. The Polyvagal Theory. Neurophysiological Foundations of Emotions, Attachment, Communication, Self Regulation, 2011; Norton and Company, New York.
Loss to specialist follow-up in congenital heart disease; out of sight, out of mind
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Wray, J., Friglola, A. & Bull, C. Loss to specialist follow-up in congenital heart disease; out of sight, out of mind, Heart, 2012; 99(7):485-90
Born with a heart condition: The Clinical Implications of Polyvagal Theory in Clinical application of PVT around the world (working title) edited by Prof Stephen Porges & Debs Dana
  • L Morton
Morton, L. (Submitted) Born with a heart condition: The Clinical Implications of Polyvagal Theory in Clinical application of PVT around the world (working title) edited by Prof Stephen Porges & Debs Dana. Norton Professional Books: New York.
Interpersonal Psychotherapy meet the Psychological Cost of life gifted by Medical Intervention? Counselling Psychology Review
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Morton, L Can Interpersonal Psychotherapy meet the Psychological Cost of life gifted by Medical Intervention? Counselling Psychology Review, 2011; 26(3):75-86.