With improved survival following cardiac transplantation, attention has focused upon the quality of that survival and some of the variables that may impact quality of life. The present study objectively measured subjective aspects of quality of life in order to discover its pre- and postoperative predictors. Results indicate that immunosuppression following heart transplantation creates a significant number of complications and symptoms for the recipient and is significantly related to elevated levels of psychological distress, particularly depression and anxiety, and decreased self-esteem. These findings emphasize the importance of careful symptom evaluation and targeting of distressed patients for psychological intervention in clinical settings and underscore the importance of continued medical research to improve immunosuppression therapy. Descriptive statistics reveal a rather mixed picture of postoperative quality of life which may result from the difficult clinical reality in which heart transplant patients often trade one set of preoperative cardiac symptoms for another set of postoperative symptoms related to immunosuppression therapy.

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Purpose The purpose of this enquiry is to explore the symptom experience and the health-related quality of life (HRQL) of children who have survived a brain tumour. Design An emergent, mixed-method study design was used with three phases of inquiry. 1) A systematic review was undertaken of previous research on the HRQL outcomes and symptom experience of children who have survived a brain tumour. 2) A quantitative study of the relationship between symptom experience and HRQL in 50 children who have survived a pediatric brain tumour was completed. This study was followed by a qualitative study of 12 children that used an interpretive descriptive methodology to understand the perceived relationship between symptom experience, coping and quality of life. 3) The results of phases 1 and 2 were translated into an evidence-informed clinical practice framework. Results 1) Pediatric brain tumour survivors had poorer HRQL outcomes than other cancer survivors or healthy peers. Only two previous studies had explored the relationship between symptoms and HRQL. 2) Pediatric brain tumour survivors experience many symptoms following the completion of treatment. The most distressing symptoms were pain, headaches, fatigue and sleep problems. Survivors of pediatric brain tumours described multiple symptoms that affect their life; yet overall they described their quality of life as good. Survivors used a variety of coping strategies to help mitigate the negative effects of these symptoms. 3) The results of the above studies informed the development of a clinical practice framework (the Queen’s-Macartney Multidisciplinary Action Plan for Oncology Survivors - Q-MapS), that requires further testing. It is intended to optimize clinical practice, to encourage education and to stimulate further research. Conclusions Child survivors of brain tumours experience various symptoms that can affect their HRQL. Nurses play a pivotal role in the systematic assessment and management of the multidimensional symptom experience of children following treatment for a brain tumour. Q-MapS can empower patients and their families by increasing their awareness of potential or actual problems related to their symptom experience and HRQL. More research is needed to better understand the relationship between symptoms and HRQL in children surviving brain tumours. / Thesis (Ph.D, Nursing) -- Queen's University, 2013-05-01 21:12:57.809

The current research explores how adult attachment patterns present after an acquired brain injury (ABI) and possible associations with psychological distress, social isolation and health-related quality of life (HRQOL). It was hypothesised that attachment anxiety and attachment avoidance would explain additional variance in HRQOL and that this possible association would be mediated through psychological distress and social isolation. For this quantitative research a non-experimental, cross sectional cohort design was implemented. Forty individuals with ABI completed the Experiences in Close Relationships—Relationship Structures questionnaire, the Quality of Life in Brain Injury questionnaire, the EuroQol-5 Dimension Scale, the Hospital Depression and Anxiety Scale and the Friendship Scale. The results suggest that levels of attachment anxiety and attachment avoidance after an ABI are similar to those reported in healthy samples. Moreover, higher rates of attachment anxiety and attachment avoidance were associated with lower HRQOL, as well as increased levels of anxiety and social isolation. No association was found with depression. However, depression was shown to be the largest significant predictor of HRQOL after ABI (β = -.41, p < .005). Social isolation was also shown to predict HRQOL after ABI (β = .32, p < .05). Mediation analysis suggests that both attachment anxiety and attachment avoidance have an indirect relationship with HRQOL through social isolation, or through social isolation and psychological distress. It is concluded that adult attachment is an important theory to consider after ABI, due to its possible indirect relationship with HRQOL. These findings suggest that professionals should consider individuals' attachment patterns for treatment purposes and try to foster secure attachment patterns during rehabilitation.

Bakgrund: Endometrios är en gynekologisk sjukdom som drabbar ett stort antal kvinnori hela världen. Ofta bemöts dessa kvinnor av kunskapsbrist, misstro och normaliserande attityder som förorsakar försening av diagnos, vård och behandling som skapar onödigt lidande för dessa kvinnor. Sjuksköterskor har en viktig funktion i bemötandet av dessa kvinnor genom att stödja kvinnan, skapa en god allians och ge relevant information. Syfte: Syftet med studien var att beskriva kvinnors upplevelser av livskvalitet vid endometrios samt att granska och beskriva de inkluderade artiklarnas datainsamlingsmetoder. Metod: Litteraturstudien har en deskriptiv design. Data insamlades via databaserna Medline/PubMed samt Cinahl och tolv artiklar återfanns, samtliga med kvalitativ ansats och ligger till grund för resultatet i studien. Resultat: Endometrios medför en kraftigt nedsatt livskvalitet som inverkar på deras parrelation samt sociala liv såsom arbete, skola och fritidsintressen. Kunskapsbrist inom vården leder till normalisering och fördröjd diagnos som skapar onödigt lidande för dessa kvinnor. Många av kvinnorna skapade egna strategier för att hantera sina symtom i  vardagen. Samtliga tolv artiklar med deskriptiv design, har samlat in data genom att intervjua kvinnorna om deras erfarenheter av att leva med endometrios. Slutsats: Endometrios påverkar markant kvinnornas vardag och samtliga relationer på ett negativt sätt. De påverkas både fysiskt, psykiskt och socialt vilket leder till att de får sin livskvalitet kraftigt sänkt. Med ökade kunskaper inom området kan stora ekonomiska besparingar göras om diagnos ställs i ett tidigare skede. Kvinnornas lidande skulle minska och deras livskvalitet öka avsevärt. / Background: Endometriosis is a gynaecological disease that affects a large number of women throughout the world. These women are often treated by the lack of knowledge, distrust and normalizing attitudes. That causes delay in diagnosis care and treatment, which creates unnecessary suffering. Nurses have an important function in the treatment of these women by supporting the woman, create a good alliance and provide relevant information. Aim: The aim of the study was to describe women's experiences of quality of life in endometriosis and to examine and describe the articles included data collection methods. Method: Literature study has a descriptive design. Data were collected through Medline / PubMed and CINAHL and twelve articles were found, all with qualitative approach. These articles were the basis for this study. Results: Endometriosis results in a greatly reduced quality of life that affects their partner, relationship and social life, such as work, school and hobbies. A lack of knowledge in health-care leads to normalization and delayed diagnosis that creates unnecessary suffering for these women. Many of the women created their own strategies to deal with their symptoms in daily life. All twelve articles with descriptive design have collected data by interviewing women about their experiences of living with endometriosis. Conclusion: Endometriosis affects significantly the women's daily lives, and all the relationships, in a negative way. Their health is affected physically, psychologically and socially with the result that they get their quality of life greatly reduced. Significant financial savings can be made by increased knowledge in the field and diagnosis at an earlier stage. Suffering from Endometriosis would be reduced, and the quality of life for those women’s will significantly increase.

HIV is a potentially fatal virus that affects over 1,148,200 people in the United States. Due to the minority status that comes with living with HIV, PLH (people living with HIV) often encounter various aspects of stigma due to HIV, which contributes to suppressed overall psychological quality of life (PQOL).While the relationship between stigma and PQOL in PLH is well documented, little research examines mediators of this relationship. We hypothesized that spirituality (as measured by sense of peace, forgiveness of self and perceived fulfillment of life's goal) mediates the relationship between stigma and PQOL (as measured by depression, mental health and stress). We used an explanatory sequential mixed methods design which utilizes two distinct phases of the research process: quantitative (QUANT) analysis followed by qualitative (QUAL) analysis. Results of the QUANT phase suggest spirituality is a partial mediator in the relationship between stigma and PQOL in PLH. In the QUAL phase, we interviewed 15 PLH to elaborate on the relationships between the three constructs. We found PLH endorsed personalized stigma most frequently. Similarly, our results also indicate PLH experience stress, depression and anxiety as a result of their HIV status. Lastly, participant's interviewed most commonly described their spiritual beliefs as relating to religion or God, which is in contrast to how spirituality was conceptualized in the quantitative portion of our study. In all, QUAL results confirmed QUANT findings, with the one main difference between how spirituality was conceptualized between the QUANT and QUAL qualitative portions of our study. Results highlight the importance of clinicians inquiring about PLH's PQOL, experiences of stigma and spiritual beliefs.

Objectives. To compare four diverse approaches to measuring patient perceptions about health outcomes; the SF-36 Health Survey; clinically derived condition specific instruments; daily time trade-off (DTTO); patient generated index (PGI). The relationship between the instruments and their responsiveness to changes in Health Related Quality of Life (HRQL) was assessed. Results. The response rate exceeded 75% (1327 respondents). The SF-36 had Cronbach's Alpha values above the criterion of 0.7. Test-retest estimates were above 0.7 for al but the role-limitations scales which were above the criterion of 0.5. The specific instruments produced Alpha values and test-retest estimates above 0.7. The DTTO and PGI produced estimates of reliability above 0.5. Evidence for the construct validity of the SF-36 was demonstrated by the differences in scale scores between the general population and four condition-specific groups. Evidence for the construct validity of the specific instruments and PGI was demonstrated by the significant moderate levels of correlation with the SF-36. Evidence for the validity of all four approaches was demonstrated by patient scores behaving as predicted in relation to condition-specific and sociodemographic variables. Comparisons of the four approaches show that the relationship between them is condition dependent. Score changes for the SF-36, specific instruments and PGI were significantly related to self reported health transition. The SRMs for the specific instruments were significantly greater than those for the SF-36. Conclusions. These results demonstrate that the SF-36 has similar properties in United Kingdom patient populations as those in the United States and is satisfactory for comparisons of groups. The clinically derived approach is recommended for constructing instruments where no suitable condition-specific instrument exists. These two approaches are recommended for use as part of a package of instruments for assessing health outcomes.

Arthritis is a growing aging and public health concern in Canada and elsewhere. As with many other chronic health conditions, arthritis occurs more often and has a higher impact on functioning for people who have lower incomes or live in an impoverished environment. There is a large body of research that supports a gradient between socioeconomic status and health and between area level poverty and decreased quality of life. Although this relationship is widely acknowledged, less is known about the influence of broader social conditions at the neighbourhood level on health outcomes. By examining quality of life from the theoretical framework of poverty as a fundamental cause of differences in health (Link & Phelan, 1995) and Bourdieu’s (1984) theory of habitus, I provide an analysis of the direct impact of material and social deprivation on health related quality of life (HRQoL), as well as the impact considering the influence of age, body weight, physical functioning, gender, and coexisting health conditions. I also examine interaction effects between neighbourhood deprivation and individual characteristics. An explanatory three-level multilevel model supported a relationship between individual factors as well as deprivation at the neighbourhood level on quality of life. The impact of neighbourhood deprivation was more pronounced for mental health related life quality, with a history of another health condition making the largest contribution to the model. Physical HRQoL was impacted by gender in interaction with material deprivation and body mass index in interaction with social deprivation. I discuss implications for practice, service delivery, and policy and make suggestions for further research. / May 2016

Thesis (M.Sc.(Physiotherapy)), Faculty of Health Sciences, University of the Witwatersrand, 2009 / Background: The impact of non-traumatic lower limb amputation on participant’s quality of life (QOL) is unknown. In an effort to provide better care for people with lower limb amputation, there is a need to first know the impact of this body changing operation on people’s quality of life. Aim of the study: To determine the impact of lower limb amputation on QOL in people in the Johannesburg metropolitan area during their reintegration to their society/community of origin. Objectives: 1. To establish the pre-operative and post-operative:  QOL of participants (including the feelings, experiences and impact of lower limb amputation during the time when they have returned home and to the community).  The functional status of participants.  Household economic and social status of these participants. 2. To establish factors influencing QOL. Methods: A longitudinal pre (amputation) test –post (amputation) test study utilized a combination of interviews to collect quantitative data and in-depth semistructured interviews to gather qualitative data. Consecutive sampling was used to draw participants (n=73) for the interviews at the study sites pre-operatively. The three study sites were Chris Hani Baragwanath Hospital, Charlotte Maxeke Johannesburg General Hospital and Helen Joseph Hospital. Participants were then followed up three months later for post-operative interviews and key informants were selected for in-depth interviews (n=12). Inclusion criteria: Participants were included if they were scheduled for first time unilateral (or bilateral amputation done at the same time) lower limb amputation. The participants were between the ages of 36-71 years. Exclusion criteria: Participants who had an amputation as a result of traumatic or congenital birth defects were excluded from the study. Participants with comorbidities that interfered with function pre-operatively were not included. Procedures: Ethics: Ethical clearance was obtained from the Committee for Research on Human Subjects at the University of the Witwatersrand and permission was obtained from the above hospitals. Participants gave consent before taking part in the study. Instrumentation: A demographic questionnaire, the EQ-5D, the Modified Household Economic and Social Status Index (HESSI), the Barthel Index (BI) and semi-structured in-depth interviews were used. Data collection: Participants were approached before the operation for their preoperative interviews using the above questionnaires and then followed up postoperatively using the same questionnaires and some were selected to participate in semi-structured in-depth interviews three months later. Pilot study: The demographics questionnaire and the modified HESSI were piloted to ensure validity and reliability. iii Data analysis: Data were analyzed using the SPSS Version 17.0 and STATA 10.0. The significance of the study was set at p=0.05. All continuous data are presented as means, medians, standard deviations and confidence intervals (CI 95%). Categorical data are presented as frequencies. Pre and post operative differences were analyzed using Wilcoxon Signed-rank test. A median regression analysis (both the univariate and multivariate regression) was done to establish factors influencing QOL. Pre and post operative differences in the EQ-5D items and the BI items were analyzed using Chi square/Fischer’s exact depending on the data. Data were pooled for presentation as statistical figures in tables. Both an intension to treat analysis and per protocol analysis were used. A grounded theory approach was used to analyze the concepts, categories and themes that emerged in the qualitative data. Results: Twenty-four participants (33%) had died by the time of follow up. At three months, n=9 (12%) had been lost to follow up and 40(55%) was successfully followed up. The preoperative median VAS was 60 (n=40). The postoperative median VAS was 70. The EQ-5D items on mobility and usual activities were reported as having deteriorated significantly postoperatively (p=0.04, p=0.001respectively) while pain/discomfort had improved (p=0.003). There was no improvement in QOL median VAS from the preoperative status to three months postoperatively The preoperative median total BI score was (n=40). The postoperative median total BI score was 19. There was a reduction in function (median BI) from the preoperative status to three months postoperatively (p<0.001). The ability to transfer was improved three months postoperatively (p=0.04). Participants were also found to have a decreased ability to negotiate stairs (p<0.001). Mobility was significantly reduced three months postoperatively (p=0.04). During the postoperative stage (n=40), 38% of the participants were married. Most (53%) of the participants had no form of income. The highest percentage of participants in all instances (35%) had secondary education (grade10-11), while 25% had less than grade 5. Only one participant was homeless, 18% lived in shacks, 55% lived in homes that were not shared with other families. People with LLA in the Johannesburg metropolitan area who had no problem with mobility preoperatively (EQ-5D mobility item), who were independent with mobility (BI mobility item) preoperatively, who were independent with transfer preoperatively (BI transfer item) had a higher postoperative quality of life (postoperative median EQ-5D- VAS) compared to people who were dependent or had problems with these functions preoperatively. Being females was a predictor of higher reported quality of life compared to being male. Emerging themes from the qualitative data were psychological, social and religious themes. Suicidal thoughts, dependence, poor acceptance, public perception about body image, phantom limb related falls and hoping to get a prosthesis were reported. Some reported poor social involvement due to mobility problems, employment concerns, while families and friends were found to be supportive. Participants had faith in God. Conclusion: Participants’ QOL and function were generally scored high both preoperatively and postoperatively but there was a significant improvement in QOL and a significant reduction in function after three months although participants were generally still functionally independent. Good mobility preoperatively is a predictor of good QOL postoperatively compared to people with a poor preoperative mobility status Generally, most participants had come to terms with the amputation and were managing well while some expressed that they were struggling with reintegration to their community of origin three months postoperatively with both functional and psychosocial challenges.