Rebecca Renwick

Coping and social support as determinants of quality of life in HIV/AIDS.

Coping, social support and quality of life (QOL) were examined in 120 HIV+ people (mean age = 37). The sample came from ambulatory clinics and drop-in centres in Toronto: 29% had AIDS, 35% were HIV symptomatic, and 35% were asymptomatic. Information was gathered from self-administered questionnaires. Respondents had good levels of social support and used a variety of coping strategies. Their scores on the behavioural and subjective measures of QOL were somewhat below average. The illness-related measure indicated that their diagnosis had an almost neutral effect on QOL and showed several areas where QOL had been positively affected. Data from male subjects only (n = 107) were analysed using a hierarchical block regression for each QOL measure. Income, emotional social support, and problem-oriented and perception-oriented coping were positively related to QOL. Tangible social support and emotion-oriented coping were negatively related and symptom severity was not related at all. Close friends provided most types of support. Although respondents indicated high levels of satisfaction with support generally, they expressed a need for more emotional support. Unemployment was high despite participants being relatively healthy and well-educated.

Social support and quality of life over time among adults living with HIV in the HAART era

Stability in perceived social support and associations between social support and health-related quality of life for a sample of 41 adult outpatients living with HIV/AIDS (PHA) in Canada were assessed longitudinally. Construct-specific dimensions of the Medical Outcomes Study Social Support Survey (SSS), the Physical and Mental components of the Short-Form-36 (SF-36) quality of life measure, as well as clinical factors (i.e., symptomatology, immunologic/virologic variables), were measured in three waves: initial consecutive registration (T1, 1997), 2-year (T2, 1999) and 4-year (T3, 2001) follow-up, and evaluated for changes using repeated-measures analysis of variance, supplemented by Friedman tests for SSS and SF-36 ratings. Proportions of the PHA sample with clinically significant SSS changes (i.e., greater than 0.5 standardized effect size) were also calculated. Effects of improvement versus deterioration in SSS ratings on SF-36 ratings, and vice versa, were explored. Associations between SSS and SF-36 ratings, as well as between changes in SSS ratings and SF-36 ratings, were assessed using multiple regression analyses controlling for clinical factors. Cross-lagged analyses were conducted to examine predictive potential between SSS and SF-36 ratings. Clinical outcomes suggested immunologic improvement tempered by symptoms and/or treatment side effects. SSS and SF-36 mean ratings were moderately stable over time, but clinically significant 4-year decrements in SSS ratings occurred for approximately 40% of patients. A trend occurred in which poorer SF-36 mental outcomes portended poorer emotional and informational support. Otherwise, relations between SSS and SF-36 ratings appeared to be reciprocal. Cross-sectional associations between SSS and SF-36 ratings were more pronounced at T2 compared to baseline and T3. Changes in SSS and SF-36 ratings were somewhat related over the consecutive 2-year periods but not over the long term. T1-T2 SSS changes were associated with changes in the SF-36 mental component. T2-T3 SSS changes were associated with changes in the SF-36 physical component. Cross-lagged analyses yielded little explanation concerning direction of causation in terms of associations between social support and quality of life for the PHA in this study.

Frailty: constructing a common meaning, definition, and conceptual framework.

The term frailty has been used for many years, both in everyday and academic language. It is a term that appears, on the surface, to be simple enough in its meaning, yet it has been used in a variety of ways to describe both people and a condition that applies to people. Moreover, little conceptual thought has gone into the nature of frailty and the factors that might affect it. This paper presents a definition of frailty: frailty occurs when there is diminished ability to carry out the important practical and social activities of daily living. It also presents a conceptualization of frailty that specifies its basic components, the categories of factors that contribute to it, and its relationship to closely related concepts.

Quality of life indicators and health : Current status and emerging conceptions

Quality of life is an increasingly common theme in the health status and health promotion literatures. Six approaches that consider quality of life and health are reviewed. These are (a) health-related quality of life; (b) quality of life as social diagnosis in health promotion; (c) quality of life among persons with developmental disabilities; (d) quality of life as social indicators; (e) the Centre for Health Promotion (University of Toronto) model, and (f) Lindstroms quality of life model. Each approach is considered as to its emphasis on objective or subjective indicators, individual or system-level measurement, value-laden or value-neutral assumptions, and potential relationship to social policy and social change goals. The links among the social indicators, quality of life, and health promotions areas are examined.

Making the links between community structure and individual well-being: community quality of life in Riverdale, Toronto, Canada.

An inquiry into community quality of life was carried out within a framework that recognizes the complex relationship between community structures and individual well-being. Through use of focus groups and key informant interviews, community members, service providers, and elected representatives in a Toronto community considered aspects of their community that affected quality of life. Community members identified strengths of access to amenities, caring and concerned people, community agencies, low-cost housing, and public transportation. Service providers and elected representatives recognized diversity, community agencies and resources, and presence of culturally relevant food stores and services as strengths. At one level, findings were consistent with emerging concepts of social capital. At another level, threats to the community were considered in relation to the hypothesized role neo-liberalism plays in weakening the welfare state.

Quality of Life for Children and Adolescents with Developmental Disabilities: Review of conceptual and methodological issues relevant to public policy

The construct of quality of life has great potential for guiding development and evaluation of policies for children with developmental disabilities. However, there are many different definitions and models of quality of life, and not all of them are equally appropriate for developing policies that would meaningfully address the needs of children with develop mental disabilities. Accordingly, the purpose of this article is to review major approaches to quality of life and discuss three models specific to children with respect to their relevance to public policy for children with developmental disabilities. Review of these models includes a discussion of quality of life definitions and conceptual issues, as well as analysis of major measurement characteristics of the instrument(s) associated with each model. Potential of each model for guiding development and evaluation of policy is also considered.

Parental Perspectives of the Quality of Life in School Environments for Children With Asperger Syndrome

Findings reported here are from a secondary analysis of in-home, semistructured interviews with a subsample of 9 participants from a larger study examining the perspectives of parents of children with Asperger Syndrome (AS) concerning what contributes to and detracts from their childrens quality of life at school. Audiotaped interview data used in the secondary analysis had already been gathered by a trained interviewer and then transcribed verbatim. The secondary analysis followed a modified grounded theory approach. Major themes identified are highlighted, specifically, how quality of life is affected by (a) awareness of AS in the school system, (b) quality of social interaction, (c) the role of the teaching staff and professionals, and (d) the role of the institution and educational structure. Implications, recommendations, and future research directions are discussed.

Measuring the quality of life of older persons: a model with implications for community and public health nursing

Measuring the quality of life (QOL) of older persons can assist health professionals in achieving a number of important objectives. These include assessing the effects of illness and treatment, identifying need for support services, and developing health enhancing environments. Most QOL models focus unduly on illness and disability, define QOL too narrowly, and do not consider aspects of personal control and potential opportunities for change. A new model of QOL with associated instrumentation, the Quality of Life Profile: Seniors Version (QOLPSV), is described. Administration of the QOLPSV to 205 older persons in Ontario, Canada found it to be reliable and valid. Limitations of the instrument are presented and potential uses explored.

Getting on With Life Positive Experiences of Living With a Spinal Cord Injury

Currently, the dominant cultural beliefs toward disability are negative, and the existing literature is limited with respect to examining how people are using and/or viewing their disabilities positively. The purpose of this study was to identify how individuals living with a spinal cord injury (SCI) viewed and/or used their disability positively, and what contextual influences facilitated this positive approach. This study was a secondary analysis of qualitative data from a larger study. The findings revealed three levels at which disability was viewed and/or used positively by people with SCI: self, peers, and disability community. In addition, several aspects of the participants’ situations were found to facilitate this positive view and/or use of disability: personality, spirituality, support systems, and acceptance of one’s disability. The findings reveal that individuals with SCI are viewing and/or using their disabilities positively in many different ways. This study has significant implications for the direction of future research and for health care professionals who need to increase their advocacy and facilitating roles.

Women Living With a Spinal Cord Injury: Perceptions About Their Changed Bodies

In this article we illuminate the narratives of women living with a spinal cord injury (SCI) with regard to (a) learning how to live with a changed body and (b) exploring the factors that influence how they feel toward their new bodies. An SCI produces immediate physical impairments resulting in a changed body, which can then have physical, emotional, and social consequences to these women. Through its focus on enhancing the body, physical therapy can help to promote a positive view of the self within the changed body. Our analysis of these womens experiences resulted in a fluid, three-phase framework of learning to live with a changed body that generally moves from (a) discomfort, to (b) moving toward comfort, to (c) comfort. Physical therapy can potentially influence the process of womens gaining comfort with their changed bodies following an SCI. The framework provides a basis for future research on adaptation following SCI.