The overall aim of this thesis is to explore experiences and self-reported outcomes from Transcatheter Aortic Valve Implantation, TAVI, among people with severe aortic stenosis. The thesis includes four studies. Study I-II are based on interviews performed the day before TAVI and Qualitative Concept Analysis was used for analysis. Study III is based on interviews at six months’ follow-up and Grounded Theory was used for analysis. Study IV is quantitative and based on questionnaires at baseline and at six months’ follow-up. Nonparametric, descriptive statistics were used for the analysis. Study I described the vulnerable situation for patients with severe aortic stenosis before TAVI. They were facing death and at the same time struggling to cope with their symptoms and to maintain independent. TAVI offered hope but also caused uncertainty about the new method. Study II focused on the patients’ decision-making process. Three patterns were identified; ambivalent, obedient, and reconciled. The ambivalent patient is unsure of the value of treatment and aware of the risks; the obedient patient is unsure of the value of one's own decision and wants to leave the decision to others; the reconciled patient has reached a point where there is no choice anymore and is always sure that the decision to undergo TAVI is right. Study III offered a deeper understanding of the TAVI trajectory. A journey of balancing between hope and life-struggle was the core category of the analysis. Before TAVI patients felt threatened, but also experienced hope. The rehabilitation phase was described as demanding and depressing or surprisingly simple. At the six months’ followup patients described being pleased to return to life, however, many were still struggling with limitations. Study IV focused on quantifying the symptom burden, function and health related quality of life before and after TAVI. The results were reflected against that of patients treated with open surgery. Self-rated function and health related quality of life increased and symptoms were reduced at follow-up, but breathlessness and fatigue were still common. Conclusively, TAVI patients are struggling with limitations, both because of their comorbidities and because of their valve disease which also poses a threat to their lives. TAVI gives an opportunity to survive, to stay independent and to increase quality of life. To feel and preserve hope is essential for patients’ wellbeing, both before and during the recovery process.

The aims of this thesis were to increase the knowledge about the long-term psychological consequences in parents of children diagnosed with cancer, including parents of childhood cancer survivors (CCSs) and bereaved parents, and to take the first steps towards developing a psychological treatment for parents of CCSs. Study I was a systematic review synthesizing the literature on psychological long-term consequences in parents of CCSs. Study II had a longitudinal design assessing posttraumatic stress symptoms (PTSS) from shortly after the child’s diagnosis (T1, N=259) up to five years after end of the child’s treatment or death (T7, n=169). Study I and II concluded that while most parents show resilience in the long-term, a subgroup report high levels of general distress and/or PTSS. In Study III, interview data from the last assessment in the longitudinal project (T7, n=168) was used. Participants described particularly negative and/or positive experiences in relation to their child’s cancer, and results pointed to the wide range of such experiences involved in parenting a child with cancer. In Study IV and V, parents of CCSs reporting cancer-related psychological distress were included (N=15). In Study IV, a conceptualization of this distress was generated by aggregation of individual behavioral case formulations. The conceptualization consisted of two separate but overlapping paths describing development and maintenance of symptoms of traumatic stress and depressive symptoms. In Study V, cognitive behavior therapy (CBT) based on the individual case formulations were preliminarily evaluated in an open trial. The CBT appeared feasible, and at post-assessment participants reported significant decreases in PTSS (p<.001), depression (p<.001), and anxiety (p<.01) with medium to large effect sizes (Cohen’s d=0.65-0.92). Findings indicate that psychological long-term consequences in parents of children with cancer consist of a broad range of negative as well as positive experiences, and that while most parents show resilience in the long-term, a subgroup report high levels of psychological distress. For parents of CCSs this distress is suggested to primarily consist of symptoms of traumatic stress and depression, and a preliminary evaluation of CBT targeting hypothesized maintaining mechanisms showed promise in terms of feasibility and treatment effect. / Behandling av traumatisk stress hos föräldrar till cancerdrabbade barn med kognitiv beteendeterapi via internet / Förekomst, utveckling och behandling av posttraumatiskt stressymptom hos föräldrar till barn med cancer / Utveckling och utvärdering av ett webbaserat psykologiskt självhjälpsprogram för föräldrar till barn som tidigare behandlats mot cancer

Bakgrund: Hjärt- och kärlsjukdomar är en vanlig dödsorsak i världen och i Sverige. Hjärtinfarkt orsakas av ateroskleros som i sin tur leder till syrebrist i hjärtmuskulaturen. Symtombilden är individuell och symtom som bröstsmärta, illamående och andningspåverkan kan förekomma. Förekomsten av att drabbas av hjärt- och kärlsjukdom skiljer sig mellan män och kvinnor. Syfte: Syftet med denna litteraturstudie var att beskriva och jämföra kvinnor och mäns symtombild vid hjärtinfarkt samt att granska undersökningsgrupper i de valda studierna. Metod: En beskrivande litteraturstudie. 13 kvantitativa artiklar valdes ut till den föreliggande litteraturstudien. Huvudresultat: Bröstsmärta var det vanligaste och mest förekommande symtomet hos både män och kvinnor vid hjärtinfarkt. Kvinnor beskrev mer ryggsmärta, smärta lokaliserat till skulderbladen och nacksmärta. Män rapporterade mer smärta i höger sida av bröstkorgen och arm. Illamående, andningsbesvär och svaghetskänsla visade sig mer förekommande hos kvinnor medan män presenterade mer svettningar. Tydliga skillnader fanns i antal rapporterade symtom i samband med hjärtinfarkt, kvinnor rapporterade fler än män. Slutsats: Det framkom både likheter och skillnader i män och kvinnors symtombild vid hjärtinfarkt, symtomen var varierande och individuella. För att sjuksköterskan ska kunna tillgodose patientens individuella omvårdnadsbehov krävs kunskap om hjärtinfarktens varierande symtombild. Detta är viktigt för att i god tid kunna handla korrekt för att förhindra komplikationer och bestående men hos patienter som drabbas av hjärtinfarkt. Mer forskning inom området skulle öka kunskapen hos sjuksköterskan och bidra till en bättre omvårdnad för patienter som drabbas av hjärtinfarkt. / Background: Cardiovascular disease is a common cause of death in the world and in Sweden. Myocardial infarction is caused by atherosclerosis, which in turn leads to hypoxia in the heart muscles. The symptoms are individual and symptoms such as chest pain, nausea and respiratory effects may occur. The existence of suffering from cardiovascular disease differ between men and women. Purpose: The purpose of this study was to describe and compare women's and men's symptoms of myocardial infarction and to review the study groups in the selected studies. Method: A descriptive literature. 13 quantitative articles were selected to the present literaturestudy. Main Results: Chest pain was the most common symptom in both men and women with myocardial infarction. Women described more frequent back pain, pain localized to the shoulder blades and neck pain. Men reported more pain in the right side of the chest and arm. Nausea, dyspnea and weakness proved to be more common in women, while men presented more sweating. Distinct differences were found in the number of reported symptoms associated with a myocardial infarction, women reported more symptoms than men. Conclusion: The litteraturstudy revealed both similarities and differences in men's and women's symptoms of myocardial infarction, symptoms were variable and individual. For the nurse to meet individual patient care needs requires knowledge of myocardial infarctions varying symptoms. This is important in order to act properly and in an early stage to prevent complications and permanent damage in patients who suffer from myocardial infarction. More research in this area would empower the nurse and contribute to better care for patients who suffer from myocardial infarction.

The purpose of this study was to explore heterosexual bias in the diagnosis and treatment of gay males. Two hundred-fifty (134 males and 116 females) mental health professionals from the Division of Psychotherapy (29) of the American Psychological Association participated in the study. Participants were randomly assigned to one of two case history conditions, which presented a 35-year-old male seeking therapy. Both conditions were equivalent with regards to the presenting problem (i.e., diagnostic symptoms) with the exception of his significant other (i.e., gay vs. non-gay condition). Potential bias was measured through a diagnostic rating Likert scale and a treatment plan questionnaire. Other independent variables that could potentially have an effect on diagnostic ratings were explored, such as gender, year of graduation, and theoretical orientation of the respondents. Results of the statistical analyses failed to confirm evidence of heterosexual bias. Implications for further research and training are discussed.

Many psychotic patients fail to admit they are mentally ill. The current study evaluated the associations between insight, specific symptoms, and neurocognitive impairments. Thirty-three acute inpatients with a schizophrenia, schizoaffective disorder, or psychotic disorder NOS diagnosis were rated on the SAIE, Birchwood's IS, and the BPRS. Neurocognitive assessments of attention and frontal lobe functioning were also conducted. Stepwise multiple regression analyses found composites representing delusions, disorganization, and anxiety/depression, as well as CPT-IP shapes hit rate, served as significant predictors of total insight or the specific insight dimensions. At least for acute patients, symptoms tended to have stronger relationships with and were more regularly predictive of insight than neurocognitive measures, though the attentional task associated with right hemisphere functioning, contributed significantly.

Coping with a cancer diagnosis is known to be a stressful experience that can be related to declines in personal well-being and increases in distress. Dispositional mindfulness is known to be related to depressive symptoms and well-being. The primary purpose of this study was to examine the relationship between mindfulness and experiences of depressive symptoms and well-being in people recently diagnosed with cancer. Seventy-four participants who were diagnosed with cancer in the last 12 months completed an initial self-report survey, and 43 of those completed another survey 3 months later. Cross-sectional regression analysis showed that higher levels of mindfulness were related to fewer depressive symptoms, less use of avoidant coping, and more experiences of positive affect at baseline, but not related to positive reappraisal coping at baseline. Longitudinal regression analyses showed no significant relationship between mindfulness at baseline and depressive symptoms, experiences of positive affect, positive reappraisal coping, or avoidant coping 3 months later, after controlling for the dependent variable at baseline. Additionally, cross-lagged analysis indicated no evidence of a causal relationship between mindfulness at baseline and the dependent variables 3 months later.

Although Parkinson’s disease (PD) is commonly characterized by motor symptoms and physical limitations, there is growing recognition of nonmotor and mood symptoms associated with the disease as well. There has been limited research exploring how individual coping might affect the relationships between PD symptoms and mental health outcomes. The resilience construct was originally developed within the child literature, and it is often used in conceptualizing how people have adaptive or positive outcomes when facing adversity. Current resilience measures may not adequately assess the construct within an older population, however, given the unique emotion regulation and coping skills seen in late life. This survey study of 139 community-dwelling adults with PD (M age = 64.25 years, SD = 10.12, range 34-89 years) investigated whether resilience moderated the relationship between PD-related factors (nonmotor symptoms, functional impairment, and disease symptom-related QOL) and mental health outcomes (depression, apathy, satisfaction with and adjustment-quality of life). Further analyses explored whether hypothesized age-related resilience components (optimism, goal-flexibility, and meaning-making ability), accounted for unique variance above and beyond a standard resilience measure (Resilience Scale for Adults). Results indicated that disease symptom-related QOL predicted depression and adjustment-related QOL, while functional impairment predicted apathy, life satisfaction, and adjustment related QOL. Participants overall reported moderate to high resilience; resilience was a significant predictor of all mental health/QOL outcome measures, and those with comparatively lower self-reported resilience had worse disease symptoms. Resilience did not moderate the relationship between disease symptoms and mental health/QOL. Meaning-making ability and goal-flexibility accounted for unique variance above and beyond the standard resilience measure for several outcome variables. Age was a significant moderator, such that the protective value of meaning-making ability and optimism on depression were greater for younger compared to older participants. This study highlighted the presence of moderate to high resilience in PD patients, however those with comparatively lower resilience had poorer outcomes. Other coping variables appear to be important contributors to mental health/QOL beyond a standard resilience measure. Patient age also affected several outcomes, emphasizing the importance of further integration of developmental literature into our understanding of resilience in chronic disease management.

Improved survival for women receiving chemotherapy for breast cancer (BC) has been accompanied by the development/persistence of psychoneurological symptoms (PNS) that compromise their quality of life. The biological basis for these PNS is unknown, but could reflect the acquisition of soma-wide chromosomal/epigenetic alterations. An important first step in testing this hypothesis is to determine if somatic genetic/epigenetic changes arise and persist following treatment. To answer this question we longitudinally studied 71 women (ages 23-71) with early-stage BC and collected measures before chemotherapy (baseline), and 4 weeks (mid-chemo); six months (during radiation therapy for a subset of women); and one year following the initiation of chemotherapy. Acquired lymphocyte chromosomal instability (scored by micronuclei frequencies [MNF]) showed a significant increase in post-treatment compared to baseline time-points (p<0.0001), with these increases persisting for at least one year following chemotherapy. Significant predictive associations were observed between MNF and tumor characteristics [luminal B (lower MNF; p=0.0182); triple negative (higher MNF; p=0.0446)], radiotherapy (higher MNF; p=0.0004), the type of chemotherapy received (p=0.0463), race (Caucasians > African Americans; p=0.0037), perceived stress levels (positive-association; p=0.0123), and cognitive flexibility domain measures (positive-association; p=0.0238). Genome-wide acquired methylation changes were also measured in peripheral blood cells, with 1265 sites showing significant differential methylation following chemotherapy. These sites were localized to open sea, shores, shelves, and CpG island sequences and included sites within genes involved in cell cycle, DNA repair, transcription regulation, signal transduction pathways, neuronal regeneration, and immunity. To determine if the genetic/epigenetic alterations acquired in peripheral blood cells correlated with those in tumor cells, BC tumors from 10 participants were analyzed using a genome-wide copy number/targeted mutations (CN/M) microarray. While no clear blood-tumor cell correlations were detected, genome-wide CN/M evaluations showed promise for stratifying tumors. Lastly, in an unrelated project studying a rare case of fetuses in fetu, methylation changes acquired in embryogenesis were shown to be influenced by both environmental and genetic cues. In summary, acquired chromosomal/epigenetic alterations do arise following chemotherapy (and in embryogenesis). Further delineation of these acquired changes could increase our understanding of the biological basis for cancer-related side-effects and help to identify “at risk” individuals.

SYMPTOM CLUSTERS IN LUNG CANCER PATIENTS By Debra Rattican, PhD, RN A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy at Virginia Commonwealth University. Virginia Commonwealth University, 2012 Major Director: Debra E. Lyon, PhD. Professor and Chair Family and Community Health Nursing The purpose of the study was to examine selected relationships among symptoms common to individuals with lung cancer. The specific aims were: 1) To examine the relationship between the symptoms of dyspnea and anxiety in patients with lung cancer. 2) To examine the relationships among the symptoms of dyspnea, anxiety, and symptom cluster components (depressive symptoms, fatigue, pain) in patients with lung cancer. 3) To examine the correlation between functional ability and quality of life in patients with lung cancer. 4) To explore the relationships among the symptoms of dyspnea, anxiety, and symptom cluster components (depressive symptoms, fatigue, pain) in patients with lung cancer and patients’ functional ability. 5) To explore the relationships among the symptoms of dyspnea, anxiety, and symptom cluster components (depressive symptoms, fatigue, pain) in patients with lung cancer and patients’ quality of life. Data were gathered through online survey and analyzed using descriptive, correlation, principal component analysis, exploratory factor analysis, and forward stepwise regression techniques. A strong positive correlation was found between dyspnea and anxiety (both anxiety in general and anxiety at the time the survey was completed. While results of this study cannot provide conclusive evidence of the existence of a symptom cluster composed of depressive symptoms, fatigue, and pain, the results are consistent with other studies in this area. Significant positive correlations among these three symptoms indicate that this is a possible symptom cluster experienced by lung cancer patients in general. This study provides preliminary data on how these symptoms are related and how they affect functional ability, or the ability to perform routine activities of daily living (ADLS) and instrumental activities of daily living (IADLS), and quality of life in patients with lung cancer. Further study is needed on to better understand the symptom experience of these individuals in order to develop robust interventions targeting effective symptom management.

Adolescents with Sluggish Cognitive Tempo (SCT) show symptoms of slowness, mental confusion, excessive daydreaming, low motivation, and drowsiness/sleepiness. Although many symptoms of SCT reflect internalizing states, no study has evaluated the utility of self-report of SCT in an ADHD sample. Further, it remains unclear whether SCT is best conceptualized as a unidimensional or multidimensional construct. In a sample of 262 adolescents comprehensively diagnosed with ADHD, the present study evaluated the dimensionality of a SCT scale and compared CFA and bifactor model fits for parent- and self-report versions. Analyses revealed the three-factor bifactor model to be the best fitting model. In addition, SCT factors predicted social and academic impairment and internalizing symptoms. Therefore, SCT as a multidimensional construct appears to have clinical utility in predicting impairment. Also, multiple reporters should be used, as they predicted different areas of functioning and were not invariant, suggesting that each rater adds unique information.