Congenital heart disease affects tens of thousands of children and families throughout Iraq, where complex surgical treatment remains largely unavailable. Through participant-observation and in-depth interviews, I investigated the understandings of this disorder among families in two areas: Kurdish northern Iraq and Arab southern Iraq. I pay particular attention to families’ perspectives on causes and treatment of the disorder in relation to historical and current macrosocial forces. Among the families I spoke with, there is a strong connection between the recent history of violence in Iraq and congenital heart disease. This thesis is largely an attempt to understand the uses and implications of this connection between sickness and violence for Iraqi families pursuing treatment through an international non-governmental organization.

Although medical advances have improved prognosis for children with cystic fibrosis (CF) and congenital heart disease (CHD), these youth experience poor psycho - social health. Embedded within the Medical Research Council’s framework, the purpose of this Dissertation was to a) examine how CF and CHD children experience physical activity, b) explore parents’ perceptions toward their child’s activity, c) develop a theory of physical activity in childhood chronic diseases, d) develop a physical activity counselling program for youth with CF and their parents, and e) evaluate the program impact on quality of life and physical activity. Study One explored how 14 CF youth experience physical activity. Active and inactive youth were characterized by different experiences, such as a sense of hope or despair. Given the burden of treatment and the fatal nature of the disease, youth negotiated temporal barriers to activity. Study Two explored perceptions toward activity among 29 CF and CHD parents. Parents discussed the benefits and barriers associated with physical activity for both child and self, and underscored the importance of role modeling. By adopting a Grounded Theory approach, the theoretical constructs from Study One and Two were crystallized to develop a theory of physical activity in youth with CF and CHD. This theory was used to develop “CF Chatters:” A Six Week Physical Activity Counselling Program for Youth with CF and their Parents, and the intervention employed behavioural self regulation ii skills. In Study Three, four case families in the CF clinic at the Hospital for Sick Children participated in CF Chatters. Improvements were noted in quality of life and physical activity, and participants described the program as convenient and relevant to their activity concerns. CF Chatters afforded therapeutic benefits to participants. By employing an eclectic qualitative approach, this Doctoral Program has made theoretical and practical contributions toward our understanding of how physical activity is experienced among children living with CF/CHD. The findings support the use of behavioural counselling as an effective and feasible modality for enhancing quality of life and physical activity. This Dissertation calls on clinicians to attend to the activity needs of chronically ill Canadian youth.

Although medical advances have improved prognosis for children with cystic fibrosis (CF) and congenital heart disease (CHD), these youth experience poor psycho - social health. Embedded within the Medical Research Council’s framework, the purpose of this Dissertation was to a) examine how CF and CHD children experience physical activity, b) explore parents’ perceptions toward their child’s activity, c) develop a theory of physical activity in childhood chronic diseases, d) develop a physical activity counselling program for youth with CF and their parents, and e) evaluate the program impact on quality of life and physical activity. Study One explored how 14 CF youth experience physical activity. Active and inactive youth were characterized by different experiences, such as a sense of hope or despair. Given the burden of treatment and the fatal nature of the disease, youth negotiated temporal barriers to activity. Study Two explored perceptions toward activity among 29 CF and CHD parents. Parents discussed the benefits and barriers associated with physical activity for both child and self, and underscored the importance of role modeling. By adopting a Grounded Theory approach, the theoretical constructs from Study One and Two were crystallized to develop a theory of physical activity in youth with CF and CHD. This theory was used to develop “CF Chatters:” A Six Week Physical Activity Counselling Program for Youth with CF and their Parents, and the intervention employed behavioural self regulation ii skills. In Study Three, four case families in the CF clinic at the Hospital for Sick Children participated in CF Chatters. Improvements were noted in quality of life and physical activity, and participants described the program as convenient and relevant to their activity concerns. CF Chatters afforded therapeutic benefits to participants. By employing an eclectic qualitative approach, this Doctoral Program has made theoretical and practical contributions toward our understanding of how physical activity is experienced among children living with CF/CHD. The findings support the use of behavioural counselling as an effective and feasible modality for enhancing quality of life and physical activity. This Dissertation calls on clinicians to attend to the activity needs of chronically ill Canadian youth.

published_or_final_version / Paediatrics and Adolescent Medicine / Master / Master of Medical Sciences

The population of adolescent and adults with congenital heart disease (CHD) has grown rapidly. Right ventricular (RV) dysfunction remains an important issue of concern in the long-term follow up of these patients. While circulating biomarkers have shown promise in the assessment and monitoring of adult patients with left heart diseases, little is known of the role of biomarkers in reflecting RV performance in CHD patients. Emerging circulating biomarkers that reflect underlying pathophysiologic processes have gained increasing attention. These include inflammatory cytokines namely tumour necrosis factor (TNF)-α, a biomarker of apoptosis annexin A5 (AnxA5), carboxy-terminal propeptide of type I procollagen (PICP) and amino-terminal propeptide of type III procollagen (PIIINP) that reflects collagen synthesis and turnover, low circulating levels of cardiac troponin T as detected by highly sensitive assay (hs-cTnT) that may reflect subclinical myocardial injury, and microRNAs found to be involved in cardiac remodeling. The studies in this thesis aimed to test the hypothesis that circulating biomarkers may be altered in patients with volume-overloaded right ventricles after repair of tetralogy (TOF) and pressure-overloaded right ventricles after atrial switch operation for complete transposition of the great arteries (TGA), and are related to indices of RV function. In patients after TOF repair, increased circulating PICP and PIIINP levels were associated with worse subpulmonary RV and left ventricular (LV) function. In particular, these propeptides correlated positively with LV mechanical dyssynchrony, implicating a possible role of increased collagen synthesis in its pathogenesis. Increased plasma levels of hs-cTnT were further found in 30% of female, but not male patients. Female patients with elevated hs-cTnT levels compared to those without had greater RV volumes and LV mechanical dyssynchrony. Independent correlates of hs-cTnT in patients as determined from multivariate analysis were sex and RV ejection fraction. MicroRNA profiling following validation confirmed alteration of circulating levels of miR-99b and miR-766 in repaired TOF patients, a pattern distinct from that reported for left heart diseases. The miRNA expression was, however, not related to the cardiac functional indices. Patients after atrial repair for TGA had significantly higher circulating AnxA5 and TNF-αlevels, but similar PICP, PIIINP levels, compared with controls. Elevated AnxA5 level was associated with impaired systemic RV myocardial deformation, increased subpulmonary ventricular eccentricity, and increased TNF-αlevel. Elevation of hs-cTnT is found in 39% of the patients. The positive correlation between hs-cTnT level and systemic RV volume may suggest a role of hs-cTnT in reflecting RV remodeling. Circulating microRNA expression profiling and further validation identified 11 upregulated microRNAs (miR-16, miR-106a, miR-144*, miR-18a, miR-25, miR-451, miR-486-3p, miR-486-5p, miR-505*, let-7e and miR-93). Among them, miR-18a and miR-486-5p correlated negatively with systemic ventricular myocardial acceleration during isovolumic contraction, a relatively-load independent measure of systemic RV contractility. To conclude, these biomarkers reflect in varying extent the structural, functional, biological alteration of the subpulmonary and systemic right ventricles of the CHD patients late after surgical repair. These data may provide new perspectives in the understanding of progressive RV dysfunction in the adult CHD population and hopefully shed more lights on novel therapeutic interventions. / published_or_final_version / Paediatrics and Adolescent Medicine / Doctoral / Doctor of Philosophy

The work described in this thesis has been carried out over the period 1958-1965, having been begun during the tenure of a residency at the University of Colorado, Denver, U.S.A. At this time, surgery for the closure of septal defects was being actively carried out, and interest was aroused, in two clinical features which were apparent from close contact with this programme. The first was the nature of the chest deformities associated with septal defects; the second, the striking alleviation of symptoms which followed successful closure of these defects. The reasons for these phenomena were by no means clear and the subsequent work has been concerned with an attempt to understand them.

published_or_final_version / Medical Sciences / Master / Master of Medical Sciences

published_or_final_version / Paediatrics / Master / Master of Philosophy

Darbo aktualumas: Vaikų su įgimta širdies yda gyvenimo kokybės tyrimas atskleidžia ir padeda suvokti pagrindines vaikų ir jų tėvelių, šeimos problemas, poreikius, vertybes, nuostatas. Šių vaikučių gyvenimo kokybės vertinimas yra papildomas sveikatos priežiūros paslaugos veiksmingumo kriterijus. Juo remdamiesi galime stebėti sveikatos priežiūros veiksmingumą, esant reikalui, jį koreguoti, tobulinti. Tyrimo tikslas: Įvertinti 2–18 metų amžiaus vaikų, sergančių įgimta širdies yda, ir jų tėvų gyvenimo kokybę. Tyrimo uždaviniai: 1. Apžvelgti vaikų su įgimta širdies yda ir jų tėvų socialines-demografines charakteristikas. 2. Įvertinti vaikų, sergančių įgimta širdies yda, gyvenimo kokybę vaikų požiūriu. 3. Įvertinti vaikų, sergančių įgimta širdies yda, gyvenimo kokybę tėvų požiūriu. 4. Palyginti vaikų su įgimta širdies yda ir jų tėvų gyvenimo kokybės vertinimo požiūrio skirtumus. 5. Pateikti praktines rekomendacijas, šeimoms auginančioms vaikus su širdies yda, siekiant pagerinti tėvų ir vaikų gyvenimo kokybę. Tyrimo populiacija. Vaikai su ĮŠY ir jų tėveliai–gydyti Vilniaus Universiteto ligoninės Santariškių klinikose II širdies chirurgijos skyriuje bei atvykę konsultuotis į klinikos konsultacininę polikliniką, dėl širdies ydos. Tyrimo metodai:. Tyrimas atliktas anketinės apklausos metodu. Tyrimo instrumentai – anketa: PedsQLTM (Pediatric Quality of Life Inventory ™) širdies modulis versija 3.0, PedsQLTM įtakos šeimai modulis versija 2.0 bei papildoma anketa, skirta šeimos... [toliau žr. visą tekstą] / Urgency of the problem: research of quality of life of children with CHD uncovers and helps to understand the main children‘s and their parents‘, families‘ problems, demands, valuables, attitudes. Evaluation of quality of life of such children is an additional criterion to effectiveness of public health service. It can be used as a base for monitoring of effectiveness of public health service, to improve or adjust it, if needed. The aim of the research work was to evaluate quality of life of 2-18 years old children with CHD and their parents. Tasks of the research: 1. To review social–demographic characteristics of children with CHD as well as their parents. 2. To evaluate quality of life of children with CHD in children‘s point of view. 3. To evaluate quality of life of children with CHD in parent‘s point of view. 4. To compare evaluation approaches to quality of life of children with CHD and their parents. 5. To provide practical recommendations for families with CHD in order to improve quality of life of children and their parents. Sampling. Children with CHD–cured at II Surgery Department of Vilnius University hospital Santariškių klinikos as well as consulted at Consultation Clinic of the same hospital as well as their parents. Methods: The research was performed by questioning. Used tools were questionnaires PedsQLTM Cardiac module 3.0, PedsQLTM Family impact module 2.0 and additional questionnaire to evaluate family demographic data. The data was processed using... [to full text]

Congenital heart disease affects tens of thousands of children and families throughout Iraq, where complex surgical treatment remains largely unavailable. Through participant-observation and in-depth interviews, I investigated the understandings of this disorder among families in two areas: Kurdish northern Iraq and Arab southern Iraq. I pay particular attention to families’ perspectives on causes and treatment of the disorder in relation to historical and current macrosocial forces. Among the families I spoke with, there is a strong connection between the recent history of violence in Iraq and congenital heart disease. This thesis is largely an attempt to understand the uses and implications of this connection between sickness and violence for Iraqi families pursuing treatment through an international non-governmental organization.