Meaning-based quality-of-life measurement: A way forward in conceptualizing and measuring client outcomes?

Despite current imperatives to measure client outcomes, social workers have expressed frustration with the ability of traditional forms of quantitative methods to engage with complexity, individuality and meaning. This paper argues that the inclusion of a meaning-based as opposed to a function-based approach to quality of life (QOL) may offer a quantitative means of measurement that is congruent with social-work values and practice.

End games: Euthanasia under interminable scrutiny

It is increasingly asserted that the disagreements of abstract principle between adversaries in the euthanasia debate fail to account for the complex, particular and ambiguous experiences of people at the end of their lives. A greater research effort into experiences, meaning, connection, vulnerability and motivation is advocated, during which the euthanasia 'question' should remain open. I argue that this is a normative strategy, which is felicitous to the status quo and further medicalises the end of life, but which masquerades as a value-neutral assertion about needing more knowledge.

Dimensions of quality of life and psychosocial variables most salient to colorectal cancer patients

Colorectal cancer is one of the most common invasive cancers, and is responsible for considerable physical and psychosocial morbidity. Understanding the quality of life experienced by colorectal cancer patients is essential for evaluating the full impact of the disease on individuals, their families and their communities. Patient perspective is essential in establishing a proper understanding of the quality of life of colorectal cancer patients. Despite this, few studies have employed a qualitative methodology to explore quality of life issues for colorectal cancer patients. A review of the literature identified only seven qualitative studies pertaining to quality of life issues for colorectal cancer patients, a surprising finding given the prevalence of this cancer. Accordingly, this study sought to build on the findings of previous qualitative research by providing descriptive data on the quality of life and psychosocial variables most salient to colorectal cancer patients. Six core themes emerged from interview and focus group data: Satisfaction with diagnosis and treatment; support (including information provision); quality of life; benefits of diagnosis; making sense of the cancer experience; and coping strategies. The information derived from this study will help inform the development of supportive care services to address the needs of the increasing number of people diagnosed with colorectal cancer. Copyright (c) 2005 John Wiley & Sons, Ltd.

Psychology in practice: Guidelines for the provision of psychological services for older adults

The practice of psychology covers the range of ages from conception through to the end of life and palliative care. Psychologists practice in a variety of roles, but the majority of these roles involve interactions with nonprofessionals of varying ages. These interactions are governed by codes of ethical practice, whether these are developed by the funding bodies for research activities, professional associations, or regulatory bodies. Ethical codes vary in their format and emphasis, but all have the protection of the public as a major purpose. Often there are special provisions in these codes for particular populations or circumstances. Here we describe the development of ethical guidelines for the practice of psychology with older adults in Australia and report on those guidelines and their supporting literature.

Perspectives on quality of life by people with aphasia and their family: Suggestions for successful living

Understanding the client's perspective is essential for good practitioner care in rehabilitation after stroke, and nothing is more relevant than enquiring directly about our clients' quality of life to inform our management. Relatively little is known about how older people with aphasia consider the quality of their current lives, and this article seeks to explore this issue. Four women's accounts of their life quality are presented, as well as their husbands' or daughter's accounts of their lives. Their stories share some common elements. Who you love or share your life with; where you live; feeling independent and/or in control; and engaging in satisfying activities mattered to these women's life quality. The impact of aphasia varies across the cases, and the need to accept change for successful living is illustrated in all accounts.

+Psychometric evaluation of the MacDQoL individualised measure of the impact of macular degeneration on quality of life

Background: The MacDQoL is an individualised measure of the impact of macular degeneration (MD) on quality of life (QoL). There is preliminary evidence of its psychometric properties and sensitivity to severity of MD. The aim of this study was to carry out further psychometric evaluation with a larger sample and investigate the measure's sensitivity to MD severity. Methods: Patients with MD (n = 156: 99 women, 57 men, mean age 79 ± 13 years), recruited from eye clinics (one NHS, one private) completed the MacDQoL by telephone interview and later underwent a clinic vision assessment including near and distance visual acuity (VA), comfortable near VA, contrast sensitivity, colour recognition, recovery from glare and presence or absence of distortion or scotoma in the central 10° of the visual field. Results: The completion rate for the MacDQoL items was 99.8%. Of the 26 items, three were dropped from the measure due to redundancy. A fourth was retained in the questionnaire but excluded when computing the scale score. Principal components analysis and Cronbach's alpha (0.944) supported combining the remaining 22 items in a single scale. Lower MacDQoL scores, indicating more negative impact of MD on QoL, were associated with poorer distance VA (better eye r = -0.431 p < 0.001; worse eye r = -0.350 p < 0.001; binocular vision r = -0.419 p < 0.001) and near VA (better eye r -0.326 p < 0.001; worse eye r = -0.226 p < 0.001; binocular vision r = -0.326 p < 0.001). Poorer MacDQoL scores were associated with poorer contrast sensitivity (better eye r = 0.392 p < 0.001; binocular vision r = 0.423 p < 0.001), poorer colour recognition (r = 0.417 p < 0.001) and poorer comfortable near VA (r = -0.283, p < 0.001). The MacDQoL differentiated between those with and without binocular scotoma (U = 1244 p < 0.001). Conclusion: The MacDQoL 22-item scale has excellent internal consistency reliability and a single-factor structure. The measure is acceptable to respondents and the generic QoL item, MD-specific QoL item and average weighted impact score are related to several measures of vision. The MacDQoL demonstrates that MD has considerable negative impact on many aspects of QoL, particularly independence, leisure activities, dealing with personal affairs and mobility. The measure may be valuable for use in clinical trials and routine clinical care. © 2005 Mitchell et al; licensee BioMed Central Ltd.

The end of transition?:The role of informal economies in the post-Soviet space

This book challenges the accepted notion that the transition from the command economy to market based systems is complete across the post-Soviet space. While it is noted that different political economies have developed in such states, such as Russia’s ‘managed democracy’, events such as Ukraine gaining ‘market economy status’ by the European Union and acceding to the World Trade Organisation in 2008 are taken as evidence that the reform period is over. Such thinking is based on numerous assumptions; specifically that economic transition has defined start and end points, that the formal economy now has primacy over other forms of economic practices and that national economic growth leads to the ‘trickle down’ of wealth to those marginalised by the transition process. Based on extensive ethnographic and quantitative research, conducted in Ukraine and Russia between 2004 - 2007, this book questions these assumptions by stating that the economies that operate across post-Soviet spaces are far from the textbook idea of a market economy. Through this the whole notion of ‘transition’ is problematised and the importance of informal economies to everyday life is demonstrated. Using case studies of various sectors, such as entrepreneurial behaviour and the higher education system, it is also shown how corruption has invaded almost all sectors of the post-Soviet every day.

Freemasonary in France during the Nazi occupation and it's rehabilitation after the end of the Second World War

This thesis examines the involvement of the French Freemason movement in the Resistance during the Occupation of France by the Germans 1939-1945, its relationship with the Vichy government and the effect the 'Nouvelle Révolution' had on the lives of individual Masons. To set the scene and to put the role of Freemasonry into perspective in the life of France and the French political system, the origins of French Freemasonry are examined and explained. The main French Masonic obediences are discussed and the differences between them emphasised. The particular attributes of a Freemason are described and the ideals and ethos of the Order is discussed. From its earliest days, Freemasonry has often been persecuted by the Roman Catholic Church or by extreme Right-wing movements. The history of this persecution is reviewed and the reasons for its persistence noted, with especial emphasis on the treatment of Freemasons under the fascist regimes of Italy and Germany. The fate of Freemasonry in countries under German control is also briefly examined. With the occupation of France by the Germans, the differences and similarities of the treatment of French and German Freemasons are discussed. The processes and legislation of this ban are closely examined and the part played by the Vichy government in the persecution of French Freemasonry is discussed. The effects of this persecution and the consequences for individuals are examined and the Freemason's role in the emerging Resistance movement is reviewed. The contribution of many lodges to the Resistance movement is examined and the sacrifice of many Freemasons for their ideals is emphasised.

Quality of life, stress and mental health in parents of children with parentally diagnosed food allergy compared to medically diagnosed and healthy controls

Background. Food allergy is related to poorer quality of life (QoL) and mental health of caregivers. Many parents diagnose food allergy in their child without seeking medical care and there is limited research on this group. This study investigated parental QoL and mental health in parents of children with parent-diagnosed food allergy (PA), medically diagnosed food allergy (MA), and a control group with no allergy (NA). Methods. One hundred and fifty parents from a general population completed validated measures of QoL, anxiety, depression, and stress. Results. Parents of children with food allergy (PA or MA) reported higher stress, anxiety, and depression than the control group (all ). Parents of children with MA reported poorer food allergy related QoL compared to parents of children with PA (); parents of children with PA reported poorer general QoL compared to parents of children with MA (). Conclusion. Parents of children with food allergy have significantly poorer mental health compared to healthy controls, irrespective of whether food allergy is medically diagnosed or not. It is important to encourage parents to have their child medically tested for food allergy and to recognise and refer for psychological support where needed.

The experience of living with age related macular degeneration:A longitudinal study into the impact of age related macular degeneration on quality of life

In this thesis I contribute to the understanding of the experience of living with Age-Related Macular Degeneration (AMD) and its impact on quality of life through the use of a pragmatically guided mixed methods approach. AMD is a condition resulting in the loss of central vision in old age which can have a huge impact on the lives of patients. This thesis includes: literature reviewing; qualitative meta-synthesis; surveys and descriptive statistics; observation; and analysis of in-depth interviewing, in order to build a picture of what it is like for older people to live with AMD. I present the findings from six separate studies each designed to answer specific research questions. I begin with a mixed methods study to determine how well the most commonly used measure of quality of life for AMD patients’ represents patient experiences. I then go on to investigate the experiences of patients with AMD through a meta-synthesis of qualitative research and finally present four of my own empirical studies three of which investigate the experiences of patients with different types of AMD: early dry AMD, treatable wet AMD and advanced wet AMD and the final study investigates what it is like for a couple living together with AMD. Throughout the qualitative studies I use Interpretative Phenomenological Analysis (IPA) to develop an understanding of the experiences and life contexts of patients with AMD. Through rigorous analysis, I identify a range of themes which highlight the shared and divergent experiences of individuals with AMD and the need to acknowledge patients’ past, present and potential future life contexts and experiences when providing services to older people with AMD. I relate the findings of the six studies to the wider psychological literature on chronic illness and make recommendations for services for patients with AMD to be provided holistically within a lifeworld-led health care model.

The measurement properties of the menorrhagia multi-attribute quality-of-life scale:a psychometric analysis

Menorrhagia, or heavy menstrual bleeding (HMB), is a common gynaecological condition. As the aim of treatment is to improve women's wellbeing and quality of life (QoL), it is necessary to have effective ways to measure this. This study investigated the reliability and validity of the menorrhagia multi-attribute scale (MMAS), a menorrhagia-specific QoL instrument. Participants (n = 431) completed the MMAS and a battery of other tests as part of the baseline assessment of the ECLIPSE (Effectiveness and Cost-effectiveness of Levonorgestrel-containing Intrauterine system in Primary care against Standard trEatment for menorrhagia) trial. Analyses of their responses suggest that the MMAS has good measurement properties and is therefore an appropriate condition-specific instrument to measure the outcome of treatment for HMB. © 2011 The Authors BJOG An International Journal of Obstetrics and Gynaecology © 2011 RCOG.