Empowerment, Quality of Life and Service Satisfaction: comparisons between hospitalised continuing care patients and deinstitutionalised patients

Objectives: Recent advances in mental health care policy and service delivery have lead to the development of community care initiatives which have enabled those individuals traditionally cared for in hospital environments to be resettled successfully in community living arrangements that foster an ethos of empowerment and recovery. This study sought to identify differences between a hospital continuing care group (n = 16) and a community placement group (n = 20) in relation to quality of life, satisfaction and levels of empowerment. Method: The study was a cross-sectional design. It follows up a cohort of individuals identified as the ‘hospital continuing care group’ (365+ consecutive days in psychiatric hospital care) by Homefirst Community Trust in Northern Ireland. A proportion of this population has been resettled into community care environments and some continue to reside in hospital. Patients both in the hospital continuing care group and the community placement group completed two standard questionnaires that covered a number of variables including empowerment, quality of life and service satisfaction. Results: There were significant differences between the hospital continuing care and community placement groups across scores on service satisfaction, quality of life, and empowerment in the current study. Hypotheses relating to service satisfaction (z = -4.117; p

Does a Patient-Held Quality-of-Life Diary Benefit Patients With Inoperable Lung Cancer?

Purpose To examine the effect of weekly completion of a patient-held quality-of-life (QOL) diary in routine oncology practice for palliative care patients.

Parent-Reported Quality of Life of Children With Cerebral Palsy in Europe

OBJECTIVE. The goal was to determine whether the type and severity of the child's impairments and the family's psychosocial, social, and economic characteristics influence parent-reported child quality of life across the spectrum of severity of cerebral palsy.

METHODS. Our population-based, cross-sectional survey conducted in 2004 to 2005 involved 818 children with cerebral palsy, 8 to 12 years of age, from 7 countries (9 regions) in Europe. Child quality of life was assessed through parent reports by using the Kidscreen questionnaire, and data were analyzed separately for each of its 10 domains.

RESULTS. The parental response rates were >93% for all domains except one. Gross motor function and IQ level were found to be associated independently with quality of life in most domains. However, greater severity of impairment was not always associated with poorer quality of life; in the moods and emotions, self-perception, social acceptance, and school environment domains, less severely impaired children were more likely to have poor quality of life. Pain was associated with poor quality of life in the physical and psychological well-being and self-perception domains. Parents with higher levels of stress were more likely to report poor quality of life in all domains, which suggests that factors other than the severity of the child's impairment may influence the way in which parents report quality of life.

CONCLUSIONS. The parent-reported quality of life for children with cerebral palsy is associated strongly with impairment. However, depending on the areas of life, the most severely impaired children (in terms of motor functioning or intellectual ability) do not always have the poorest quality of life.

Quality of life and inflammation in exacerbations of bronchiectasis.

Patients with bronchiectasis often have impaired quality of life (QoL), which deteriorates with exacerbations. The aim of this study was to investigate changes in QoL and how these were influenced by changes in airway physiology and inflammation in patients with bronchiectasis before and after resolution of an exacerbation. Sputum induction and a QoL questionnaire were undertaken on the first day, day 14, and 4 weeks after completion of intravenous antibiotics (day 42). Eighteen patients (12 female) were recruited, median (IQ range) age of 54 (47–60) years. There was a trend towards an improvement in lung function from visit 1 to visit 2, but this was not statistically significant. C-reactive protein (CRP) [mean (SEM)] reduced between visit 1 and visit 2 [55.4 (21.5) vs 9.4 (3.1) mg/L, P = 0.03] but did not increase significantly on visit 3 [44.4 (32.9) mg/L, P = 0.27]. The median (interquartile range) sputum cell count (×106 cells/g of sputum) decreased from visit 1 to visit 2 [21.6 (11.8–37.6)–13.3 (6.7–22.9) × 106 cells/g, respectively, P = 0.008] and increased from visit 2 to visit 3 [26.3 (14.1–33.6) × 106 cells/g, P = 0.03]. All soluble markers of inflammation significantly reduced from visit 1 to visit 2 but increased on visit 3 with the exception of TNF-a. Regarding QoL, three of the four domains (dyspnoea, emotional, mastery) significantly improved from visit 1 to visit 2 but did not change between visit 2 and visit 3. The improvements in QoL scores could not be explained by the improvements in lung function or inflammatory markers.

From stress to distress: Conceptualizing the British family farming patriarchal way of life

‘Rural stress’ and ‘farming stress’ are terms that have become commonly appropriated by British health-based academic disciplines, the medical profession and social support networks, especially since the agricultural ‘crises’ of B.S.E. and Foot and Mouth Disease. Looking beyond the media headlines, it is apparent that the terms in fact are colloquial catch-alls for visible psychological and physiological outcomes shown by individuals. Seldom have the underlying causes and origins of presentable medical outcomes been probed, particularly within the context of the patriarchal and traditionally patrilineal way of life which family forms of farming business activity in Britain encapsulate. Thus, this paper argues that insufficient attention has been paid to the conceptualization of the terms. They have become both over-used and ill-defined in their application to British family farm individuals and their life situations. A conceptual framework is outlined that attempts to shift the stress research agenda into the unilluminated spaces of the family farming ‘way of life’ and focus instead on ‘distress’. Drawing upon theorization from agricultural and feminist geography together with cultural approaches from rural geography, four distinct clusters of distress originate from the thoughts of individuals and the social practices now required to enact patriarchal family farming gender identities. These are explored using case study evidence from ethnographic repeated life history interviews with members of seven farming families in Powys, Mid Wales, an area dominated by family forms of farming business. Future research agendas need to be based firmly on the distressing reality of patriarchal family farming and also be inclusive of those who, having rejected the associated way of life, now lie beyond the farm gate.

Response shift in the assessment of quality of life among people attending cardiac rehabilitation

Objectives: To examine whether any response shift in quality of life assessment over the course of a cardiac rehabilitation programme could be explained by changes in individuals’ internal standards (recalibration), values (reprioritization) and/or conceptualization of quality of life and the extent to which any response shift could be explained by health locus of control, optimism and coping strategy. Design: Longitudinal survey design. Methods: The SEIQoL-DW was administered at the beginning and end of a cardiac rehabilitation programme. At the end of the programme, the SEIQoL-DW then-test was also administered to measure response shift. A total of 57 participants completed these measures and other measures to assess health locus of control, optimism and coping. Results: Response shift effects were observed in this population mainly due to recalibration. When response shift was incorporated into the analysis of QoL a larger treatment effect was observed. Active coping as a mechanism in the response shift model was found to have a significant positive correlation with response shift. Conclusion: This study showed that response shift occurs during cardiac rehabilitation. The occurrence of response shift in QoL ratings over time for this population could have implications for the estimation of the effectiveness of the intervention.