The documentation of Recreation Therapy and Leisure Opportunities in Long-term Care The Recreation Therapy discipline at Sunnybrook Health Sciences Centre (SHSC) has undergone a series of research initiatives to ensure a patient focused philosophy is integrated into their practice. The purpose of the study is the development of documentation procedures that will enable the recreation therapy practitioners to engage in authentic and professional documentation of the residents??? experiences in recreation therapy and leisure opportunities based on a patient focused philosophy. This research project followed an action research methodology and was guided by a hermeneutic framework adapted from Karkainen and Eriksson (2004). The recreation therapists at SHSC were involved in all aspects of the project as co-research participants. This project employed a variety data collection techniques including focus groups, a hermeneutic dialogue, self-reflective activities and active application sessions. The information collected through the various data collection phases in this project led to the creation of a new documentation framework and associated sample documentation, which allow for a more patient focused documentation process. A series of quality indicators were also developed in this project to help authentically express the experiences in leisure and recreation of the residents living at SHSC. This research project has added to the growing base of knowledge focused on the integration of a patient focused care philosophy into the recreation therapy practice at SHSC.

In a 9-month prospective study, sleep and daytime functioning were compared in a community sample of 86 participants aged 25-50 years: 43 meeting DSM IV criteria for primary insomnia (26 women & 17 men); and 43 controls (32 women & 11 men). Assessments were conducted at baseline, 4 and 8 months, and included: the Pittsburgh Sleep Quality Index; Spielberger StatefTrait Anxiety Inventory; Eysenck Personality Questionnaire, Beck Depression Inventory; Fatigue Severity Scale; SF-36; Epworth Sleepiness Scale; Dysfunctional Beliefs About Sleep Scale; Sleep Hygiene and Practices Scale, Sleep Disturbance Questionnaire and the Psychomotor Vigilance Task PVT. An instrument to assess the occupational consequences of insomnia (the Occupational Impact of Sleep Questionnaire; OISQ) was also developed in the course of the study. PWI versus control group comparisons were made with repeated measures multivariate ANOVAs. Differences were consistently and significantly maintained on measures of state (F = 15.85 P <0.001) and trait anxiety (F = 23.46; P < 0.001), depression (F = 18.37; P < 0.001), fatigue (F = 22.20; P < 0.001), and neuroticism (F = 11.09; P < 0.001). Among PWI, mental health (F = 14.04; P < 0.001), pain (F = 6.92; P < 0.001), role-emotion (F = 10.94; p < 0.001), general health perceptions (F = 4.77; P < 0.05), social functioning (F = 6.58; P < 0.01) and energy and vitality (F = 32.08; P < 0.001), on the SF-36, were consistent with inferior health related QoL. In addition, pre-sleep arousal (F = 14.76; P < 0.001), sleep hygiene (F = 35.26; P < 0.001) and sleep disturbance (F = 72.32; P < 0.001) were significantly worse within PWI. Subjectively reported TIB (F = 9.38; P < 0.01), SOL (F = 11.17; P < 0.01) and WASO (F = 21.10; P < 0.001), remained greater within PWI, with SE (F = 15.29; P < 0.001), TST (F = 9.38; P < 0.01) and subjective sleep quality (F = 29.57; P < 0.001) greater within controls. Data averaged over the duration of data collection (252 days) found PWI reported an average SOL >30 minutes, an average WASO of> 30 minutes, SE < 80%. Analysed in terms of night to night sleep quality, both PWI and controls showed a pattern of 'good' (sleep efficiency >80%) and 'poor' (sleep efficiency <80%) nights. However, the probability of individual poor nights remained consistently and significantly higher for PWI across the 9 months of the study. Actigraphy data failed to confirm between group differences in sleep, and correlation with diary measures was low in both groups. PVf performance showed instability. Significant group differences found at baseline, were no longer present at subsequent data collection points. Data support the inconsistency surrounding objective performance among PWI within the literature. However, the inconsistency can be attributed to greater change within control participant's performance, rather than within PWI. Data identified the existence of a stable subgroup of PWI reporting symptoms of daytime sleepiness. Daytime sleepiness was found to be a temporally stable feature for this sub-group of PWI, who also Showed a distinctive psychological profile compared to PWI who did not report daytime sleepiness. No difference, however, was observed in subjectively reported sleep structure, quality or daytime performance between these subgroups of PWI. Insomnia subgroup analyses suggest a trait-like difference between sleepy and non sleepy PWI.The OISO showed an acceptable level of internal consistency reliability (alpha 0.93); and successfully discriminated between PWI and controls. The OISO also showed consistent correlations with measures of global sleep quality and subjective sleep parameters. Expressed in terms of comparative percentage decrement, PWI showed a consistent 10% decrement in subjective occupational performance when compared with controls. The OISO shows that absenteeism and punctuality may not capture the full impact of insomnia on workplace performance.

This research explores experiences and perceptions of mothers of adolescents and young adults (13-22yrs) with Additional Support Needs (ASN) in relation to stress, service provision and family and individual Quality of Life (QoL). A particular focus is the effect of having a family member with ASN who also has a diagnosis of Autistic Spectrum Disorder (ASD) or where the young person with ASN may have an ASD which has not been diagnosed. Mothers of young people from 4 groups were recruited: i) those with ASN and no ASD (n=41), ii) those with ASN and a diagnosis of ASD (n=18), iii) those with ASN, no diagnosis of ASD but with a positive score on an ASD screening measure (n=17) and iv) typically developing controls (n=17). The mothers of young people with ASN (n=76) completed standardised questionnaires about family and individual QoL, stress, service provision, child behaviour and presence and severity of ASD traits. Twenty two of these mothers also took part in a semi-structured interview about coping with issues identified as most stressful by them in the stress questionnaire. The mothers of typically developing young people (n=17) completed standardised questionnaires on individual and family quality of life and on the behaviour of their similarly aged son or daughter. Data collected via these questionnaires showed that increased severity of ASD was associated with increased maternal stress, which in turn was associated with decreased family and maternal QoL. Mothers of typically developing young people had significantly higher individual and family QoL scores than each of the three other groups. The findings from the interviews supported the questionnaire results and gave further insight into mothers’ life experiences. Mothers identified many perceived barriers to their child’s progress including: lack of support and lack of co-ordinated service provision. The results suggest that mothers of young people with ASN experience lower individual and family quality of life than mothers of typically developing young people. Parenting an adolescent or young adult with ASN is perceived as stressful and that the presence of behaviour associated with ASD is additionally stressful. Possible reasons for differences in quality of life outcomes amongst the study groups are discussed. Implications for adequate services and recommendations for future research are suggested.

This thesis consists of two sections, the first of which is a systematic review of selfreport measures of mindfulness. The review aims were to evaluate the psychometric properties of each of the identified measures and examine their utility for research and clinical practice. Definitions of mindfulness were central to the differences found between measures, and as such this review also provides an overview of how mindfulness has been conceptualised in the literature. This review has been presented in the format required by the journal, Clinical Psychology Review. The second section is a meta-analysis which examines the efficacy of mindfulnessbased stress reduction (MBSR). Mindfulness-based interventions are increasingly being applied in a range of settings and the evidence base is growing. Specifically, this review aimed to determine the effectiveness of MBSR on quality of life for people suffering from chronic physical health conditions. The methods and results of the meta-analysis are described in detail, followed by a discussion of the findings. A more concise overview is then provided as a journal article, in the format required by the British Journal of Clinical Psychology. The guidelines for submission to both journals are included in Appendix 1 and 2 respectively.

The relevance of individuals' values to clinical situations is increasingly recognised in political and clinical contexts. Enhancing an individual's capacity to live consistently with their values is assumed to facilitate mental well-being and quality of life (QoL). However, little research has empirically investigated whether this focus is appropriate. This collection of studies will examine the relationship between values, well-being and QoL. "Valued living" is a core aim of Acceptance and Commitment Therapy (ACT) but it has received little empirical attention. The values identified within ACT may not be equally applicable to all clinical populations. Encouraging value-consistent action is often assumed to be inappropriate to offender populations. Schwartz‟s universal model of human values is introduced to inform understanding of the relationship between values and well-being and whether mentally disordered offenders (MDOs) have similar values to a non-psychologically distressed comparison group. Method Study 1 investigated the relationship between values, quality of life (QoL), psychological distress and psychological inflexibility (cognitive fusion and experiential avoidance) amongst a sample from the non-clinical sample (N = 109) using an online survey. Study 2 compared a subsample from study 1 with MDOs detained in medium security (N = 15) on the same measures. Study 3 explored participants‟ beliefs about the origin and maintenance of meaningful values. Responses were coded according to ACT literature and analysed using content analysis. Results Amongst the non-clinical population, QoL was positively correlated with „valued living‟, and negatively correlated with psychological inflexibility and distress. Psychological distress and psychological inflexibility correlated positively with the Openness to Change value domain and conservatism correlated negatively with psychological distress. No other relationships were observed between psychological flexibility or distress and value domain in the non-clinical population. MDOs had higher rates of psychological distress and lower psychological flexibility and QoL than the non-distressed population; they also attributed less importance to the self-transcendence value domain and more to self-enhancement. Benevolence was ranked significantly lower by the MDO sample. Other large effect sizes were detected reflecting differences between the samples, but they were not statistically significant. Intrinsic reinforcement was considered an important factor that maintained values as meaningful to all participants. Self-report data suggests that there are similarities and differences to how each sample conceptualises values. Discussion A clinical focus on values appears to be justified. The addition of Schwartz‟s model provided insight into the values of MDOs. The clinical and theoretical implications of the results are discussed as are the strengths and limitations of the study.

Background: In order to aid effective assessment and detection of psychological health, a clear understanding of the risk factors for disturbance is required. This study was undertaken to test the hypothesis that demographic factors, health factors, social factors, attitudes to ageing, number of life events in the last year and relocation status would each significantly account for, and contribute to, the variance in psychological health. Method: The study employed a cross-sectional design in which 1,080 individuals over the age of 55 were randomly drawn from the community health index (CHI) of a rural health board in Scotland and invited to participate in the study. One hundred and ninety-six respondents completed questionnaires assessing psychological health and a range of potential predictors. Results: Overall, negative attitudes to ageing were the most prominent predictors of poor psychological health. Psychosocial loss was the only variable found to be a predictor of all seven outcome variables, including anxiety and depression, physical, psychological, social, and environmental quality of life, and general psychological and social functioning. Other predictors included a higher number of life events, poor social support from friends, poor self-rated health and not having a spouse/partner. Conclusions: Attitudes to ageing appear to play a significant role in the psychological health of older adults. Promoting positive perceptions of ageing in society may potentially pay dividends in the prevention of emotional distress in later life. Psychological interventions, such as cognitive behaviour therapy (CBT), may be key to addressing negative attitudes to ageing at an individual level.

Background: Metabolic control declines during adolescence, increasing the risk of severe medical complications. Numerous burdensome treatments including insulin management, blood glucose monitoring, diet and exercise are necessary to prevent such complications. Adolescence is characterised by the transition from reliance on the family to independence and increased peer affiliation. It is therefore important to examine the roles of family and peer support for diabetes management tasks within a developmental context. Previous research indicates that family may have a role in supporting practical diabetes management, whilst peers may provide emotional support. Currently there is no research that compares the impact of diabetes-specific family and peer support on both metabolic control and quality of life. The present study addresses these issues. Methods: Ninety adolescents aged 13-18 with type 1 diabetes participated in this crosssectional study. Data included youth report of diabetes-specific social support (DSSQ) from peers and family, quality of life (PedsQL) and metabolic control (HbA1c). The relationships between social support, quality of life and HbA1c were examined using t-tests and correlations. Fishers Z transformations and hierarchical multiple regression were used to investigate the social support measures as potential predictors of HbA1c and quality of life. Results: Family provided significantly more support for practical diabetes management tasks than did peers. Peers provided significantly more support for exercise, but less emotional support, than did family. Better metabolic control was predicted by lower levels of peer support for insulin management, higher levels of peer support for blood glucose monitoring, increased mood and higher levels of family support for exercise. Quality of life was predicted by increased mood, higher levels of family emotional support, family support for diet, lower levels of peer support for insulin management and higher levels of peer support for exercise. Conclusion: Whilst family support remains important throughout adolescence, peer support also has an important role in the metabolic control and quality of life of adolescents with diabetes. This has implications for clinical practice, the most significant of which being the education and inclusion of peers in diabetes care.

Missing data are a problem for any clinical trial outcome but are particularly an issue for quality of life (QoL) outcomes.  To investigate the problem of missing data and methods to deal with it, this thesis uses a novel approach, illustrated using seven completed trials. Data from postal reminders were used to investigate the missing data mechanism and test the accuracy of imputation procedures (as the true value was in fact known).  The previously analysis for five of the seven example trials was an analysis of covariance adjusting for baseline QoL and other patient characteristics.  Alternative analysis strategies taking account of other interim responses are considered and contrasted with the published analyses.  The economic impact of the different data collection methods is explored using two economic decision rules. Different analysis strategies were shown to have an impact on the result of the trial.  There is no single best way of dealing with missing data, but some recommendations for researchers are provided.  The role of reminders is shown to be extremely important as the reminder system is a cost-effective use of resources to maintain the sample size, decreasing the amount of missing data and reducing the threat of bias.  Data collected by reminders can be used to inform the selection of potential imputation methods, again reducing bias.  The aim of any trial is to obtain an unbiased as possible estimate of treatment difference to help inform and improve clinical practice to the benefit of patients; the use of reminders may be pivotal in this.

The Schedule for the Evaluation of Individual Quality of Life- Direct Weighting measure (SEIQoL-DW, O'Boyle et al., 1995) is increasingly used to assess quality of life (QoL). It involves four stages: participants 1) nominate five cues important to QoL, 2) assign satisfaction ratings, 3) assign relative importance weights; and finally 4) an index score is calculated by combining satisfaction ratings and importance weights.

Ever since the seminal Marienthal studies during the Great Depression of the 1930s, studies have linked employment to health and well-being of individuals. However, employment participation for people living with HIV (PLHIV) may not necessarily provide positive health outcomes given negative social responses to HIV infection, particularly stigma and discrimination. Using causal steps approach, the study examines the extent to which the linkage between formal employment status and health-related quality of life is affected by both social capital and HIV-related stigma among PLHIV. Quantitative data were obtained from 554 male and female adults on HIV treatment for at least two years in South Africa. Health-related quality of life (HRQoL) was measured using the validated Medical Outcomes Short Form (SF-36) (Quality Metric, USA) and is represented by physical and mental component summary scores. Formally employed study participants experienced superior HRQoL in comparison to those not formally employed. Both employment status and physical and mental component summary scores were unrelated to objective measures of HIV disease status – CD4 count and viral load. Levels of social capital did not vary significantly by formal employment status. Perceived HIV-related stigma was significantly lower among formally employed study participants than those who were not formally employed, but only in the dimension of personalised stigma, after controlling for potential confounders. Social capital indicators were significantly positively associated with mental but were unrelated to physical component summary scores. All HIV-related stigma scale scores were inversely associated with social capital indicators and with physical and mental component summary scores, after controlling for potential confounders. These results provide little support for mediation of the relationship between formal employment status and HRQoL among PLHIV by social capital and HIV-related stigma. Both social capital and HIV-related stigma have independent relevance to, but formal employment accounts for the largest effect on the health and well-being of PLHIV.