The application of quality of life

Background Despite its popularity, to date little systematic work has been done in the application of the quality of life (QOL) concept to persons with intellectual disability (ID) and its impact on individuals and families. This article addresses that need. Method The article summarizes the four application strands suggested by the IASSID SIRG on Quality of Life regarding the application of the QOL concept and discusses critical aspects of each. Results Examples and guidelines regarding each strand are presented, along with the ongoing need to align conceptualization, application, and research efforts and integrate QOL principles into professional education and training programmes. Conclusions The QOL concept is now challenging some of the more traditional views and approaches to ID. These challenges are resulting in modifications and adaptations in current services and supports, along with the need to evaluate the outcomes from the application of QOL principles to persons with ID.     

The use of quality of life data at the organization and systems level

Background To date researchers have given little attention to the use of quality of life (QOL) data for organization and systems-level change. This article presents two state-level examples of how QOL data are currently used in the USA. Method Individuals with intellectual disability (ID) were assessed on an ongoing basis using two multidimensional QOL instruments. Data were analysed at the individual and organizational level. Results Examples of statewide data utilization include: (1) determining significant predictors of quality outcomes; (2) developing provider profiles; (3) comparing individuals with ID with those without ID; (4) developing state-level performance standards; and (5) implementing continuous programme improvement. Conclusions The availability of this type of data allows service delivery systems to: (1) significantly alter the relationship between individual consumers and service providers; (2) open the system to scrutiny by citizens with and without ID; (3) improve responsiveness and quality outcomes; and (4) shape future directions of the service delivery system for people with ID.     

The quality of long-term care for dementia: A survey of ward environments

A survey of long-stay wards for elderly demented patients was carried out. The quality of five aspects of ward environment was assessed, covering institutional practices, social/recreational input, reality orientation cues, ward condition and space availability. Of the 28 wards surveyed, two-thirds achieved high quality on one aspect but only two wards had high quality on three or more aspects. In contrast, 14% of the wards obtained low-quality scores on at least three aspects. A hospital trend was found for the variation in institutional care practices. The results have implications for staff training and for reprovision programmes.     

Met and Unmet Needs for Assistance and Quality of Life for People with Severe and Persistent Mental Disorders

People with severe mental illnesses often require help not only with managing their illness, but with a broad array of social and domestic activities. The impacts of the presence of such needs in several domains of function on quality of life ratings in the same domains are assessed using data from a survey of Maryland Medicaid recipients who have severe and persistent mental disorders. Measures included self-report of need and whether help was received for it, and Lehman's Quality of Life Interview. The presence of need was associated with lower quality of life ratings, and met needs improved those ratings relative to unmet need. A current diagnosis of depression resulted in lower quality of life, but successful treatment raised scores significantly. These findings underscore the potential impact the mental health service system can have on the quality of the lives of people it serves.     

Quality of life measures for depressed and non-depressed Chinese older people

AIM: To compare the perception of quality of life (QoL) between depressed and non-depressed Chinese older people in Hong Kong and examined the factors that influence this perception. METHODS: A cross-sectional study was conducted with a convenience sample of 80 older people with a diagnosis of depression and 179 non-depressed controls. RESULTS: The depressed group had a lower rating in perceived QoL in all aspects than the non-depressed group. Level of depression and functional abilities were predictors of quality of life ratings for the both groups and activities of daily living was the predictor of quality of life for the depressed group only. The study identified the subjective perception of QoL amongst depressed older people is significantly lower than that amongst non-depressed older people. Depression affects the bio-psychosocial status of Chinese older people. This study provides insight for healthcare professionals in planning innovative services to meet their health needs.     

Individual planning: an exploration of the link between quality of plan and quality of life

Individual plans for people with intellectual disabilities were evaluated for quality and effectiveness in improving quality of life. Quality was assessed by rating whether goals were relevant, observable, age appropriate, necessary, timetabled, developmental, measurable, realistic, assigned to staff and improving at least one of O'Brien's five service accomplishments [ O'Brien & Tyne (1981) The principle of normalization: a foundation for effective services. London, Campaign for the Mentally Handicapped]. Effectiveness was assessed by examining quality of life outcomes for participants with and without individual plans rated as higher quality. No significant difference in outcomes associated with having a higher quality individual plan was found. Findings present a challenge to current expectations that presence and quality of individual plan goals are associated with improved outcomes. Written individual plan goals may not be directly correlated with actual practice, and further research is required to examine this.     

Quality of life for people with intellectual disabilities in China: a cross-culture perspectives study

Background The concept of quality of life (QOL) is explained on the basis of traditional Chinese culture and contemporary social and cultural trends. Method The importance of internationally recognized QOL domains and indicators was determined for three respondent groups: consumers, parents of the consumers, and teachers and rehabilitation professionals working with the clients. Results Principal component analysis confirmed seven factors influencing QOL for people with intellectual disabilities (ID) in China. These seven components are conceptually equivalent to the eight domains found in the international QOL literature. Conclusion The concept of QOL has become one of the most sensitive issues in present Chinese society and peoples’ lives, and an important theoretical framework for the education and rehabilitation for people with ID in several ways: curriculum development, service delivery models, education and rehabilitation practices, and employment models.     

The role of stigma in the quality of life of older adults with severe mental illness

BACKGROUND: Stigma and discrimination against older people with mental illness is a seriously neglected problem. OBJECTIVES: (1) To investigate whether stigmatisation of older adults with mental disorder is associated with the type of residential institution they live in or the type of disorder they suffer and (2) to assess the role of stigma experiences in their quality of life. METHODS: A cross-sectional study was carried out of 131 older adults with severe mental illness, recruited in 18 elder care homes operating supported living programmes and in eight psychiatric hospitals throughout the Netherlands. Stigmatisation was assessed with an 11-item questionnaire on stigma experiences associated with mental illness. Quality of life was assessed with the Manchester Short Assessment of Quality of Life (MANSA). To better ascertain the role of stigma, we also assessed in comparison the relationship of social participation to quality of life. RESULTS: Some 57% of the respondents had experienced stigmatisation. No association emerged between residential type or disorder type and the extent of stigma experiences. Stigmatisation did show a negative association with quality of life, a connection stronger than that between social participation and quality of life. CONCLUSION: A feeling of belonging, as contrasted with being excluded, is at least as important for the quality of life of older people with severe mental illness as their actual participation in the community.     

A program of positive intervention in the elderly: memories,gratitude and forgiveness

Objective: The main goal of this study has been to increase the quality of life in people of over 60 years through a positive psychology intervention.Method: We employed a program which consists of training based on autobiographical memory, forgiveness and gratitude. The sample consisted of 46 participants aged 60–93 years. State and trait anxiety, depression, general memory, specific memories, life satisfaction and subjective happiness were measured.Results: The results revealed that participants who followed the program (experimental group) showed a significant decrease in state anxiety and depression as well as an increase in specific memories, life satisfaction and subjective happiness, compared with the placebo group.Conclusion: Our program offers promising results and provides new evidence for the effectiveness of positive interventions in the field of psychogerontology, helping increase subjective well-being and quality of life in older adults by focusing interventions on the enhancement of personal and social resources for being happy.     

A systematic review of the international published literature relating to quality of institutional care for people with longer term mental health problems

Background

A proportion of people with mental health problems require longer term care in a psychiatric or social care institution. However, there are no internationally agreed quality standards for institutional care and no method to assess common care standards across countries. We aimed to identify the key components of institutional care for people with longer term mental health problems and the effectiveness of these components.

Methods

We undertook a systematic review of the literature using comprehensive search terms in 11 electronic databases and identified 12,182 titles. We viewed 550 abstracts, reviewed 223 papers and included 110 of these. A "critical interpretative synthesis" of the evidence was used to identify domains of institutional care that are key to service users' recovery.

Results

We identified eight domains of institutional care that were key to service users' recovery: living conditions; interventions for schizophrenia; physical health; restraint and seclusion; staff training and support; therapeutic relationship; autonomy and service user involvement; and clinical governance. Evidence was strongest for specific interventions for the treatment of schizophrenia (family psychoeducation, cognitive behavioural therapy (CBT) and vocational rehabilitation).

Conclusion

Institutions should, ideally, be community based, operate a flexible regime, maintain a low density of residents and maximise residents' privacy. For service users with a diagnosis of schizophrenia, specific interventions (CBT, family interventions involving psychoeducation, and supported employment) should be provided through integrated programmes. Restraint and seclusion should be avoided wherever possible and staff should have adequate training in de-escalation techniques. Regular staff supervision should be provided and this should support service user involvement in decision making and positive therapeutic relationships between staff and service users. There should be clear lines of clinical governance that ensure adherence to evidence-based guidelines and attention should be paid to service users' physical health through regular screening.     

Quality of life in newly-debuted epilepsy. An empirical study

OBJECTIVES: This study aimed to illuminate adult's experienced quality of life in newly-debuted epilepsy and to test the American instrument Quality of Life Index (QLI) for the first time on an epilepsy population. A second aim was to find appropriate questions to measure patient perceptions in epilepsy. MATERIAL AND METHODS: All persons 18-65 fulfilling criteria (n = 41) and diagnosed during a 15-month period at 2 Swedish hospitals, answered questionnaires (n = 37/41) on quality of life and perceptions of epilepsy. RESULTS: Patients experienced the highest quality in the "Family" domain and the lowest in the "Psychological/spiritual". Significant correlations were found between quality of life and experienced change of life situation, own perceptions of epilepsy, seizure frequency after diagnosis, gender and side effects from antiepileptic drugs. The QLI was well applicable on people with epilepsy. CONCLUSIONS: Data indicates that debut of epilepsy has an evident impact on quality of life and a more extensive study is required.     

Delivering ‘positive care’ in nursing homes

This article describes a study of staff activity in six nursing homes for the elderly mentally ill. Three homes formed a Department of Health Special Medical Development (SMD), were highly resourced in terms of staff, and aimed to provide a good care environment and a high quality of life for the residents. The other three homes were included for comparison. The extra resources available within the SMD homes were largely used for routine care, such as resident hygiene, rather than 'positive', life - enhancing care, such as social interaction and group activities. The failure to deliver positive care in line with increases in staff numbers cannot easily be explained. However, the indication is that it is not a result of substituting untrained for trained staff, but is rather related to the way staff resources are deployed.     

Quality of life and its measurement: important principles and guidelines

Background The importance of the valid assessment of quality of life (QOL) is heightened with the increased use of the QOL construct as a basis for policies and practices in the field of intellectual disability (ID). Method This article discusses the principles that should guide the measurement process, the major interrogatories (i.e. who, what, when, where, why, and how) of QOL measurement, issues and procedures in the cross-cultural measurement of QOL, and the current uses of QOL data. Results Based on the above methods, the article presents a number of important guidelines regarding QOL measurement. Conclusion From a measurement perspective the use of the QOL construct is changing. Initially it was used as a sensitizing notion, social construct, and unifying theme. Increasingly, it is being used as conceptual framework for assessing quality outcomes, a social construct that guides quality enhancement strategies, and a criterion for assessing the effectiveness of those strategies. This new role places additional emphasis on the valid assessment of one's QOL.     

Multiple sclerosis in Stockholm County. A pilot study of utilization of health-care resources,patient satisfaction with care and impact on family caregivers

Multiple sclerosis (MS) is a progressive, incurable neurological disease with a large impact on the person/people with MS (PwMS), the family of the PwMS, medical resources and the community. We have explored the feasibility of calculating utilization of health-care resources within Stockholm County and evaluated methods for interviewing PwMS and family caregivers in their homes. Home visits were made to 26 PwMS with different levels of disability, both in ordinary and sheltered living. Questionnaires assessing patient satisfaction, the use of technical aids and home adaptations, help from municipal and family caregivers, and health-related quality of life were administered in the form of structured interviews. Utilization of health-care resources was evaluated with the help of an available computerized register. The study shows that the chosen methods are feasible for PwMS, irrespective of level of disability or form of living. They are well accepted by both PwMS and family caregivers and need only minor modifications in order to be suitable for a population-based study.     

A population-based survey of barriers and enablers to physical activity in people using,and working in a mental health service in Scotland

Research into physical activity in people who experience mental disorders has tended to focus on those who have agreed to participate in exercise programmes. For effective health promotion across this population, it is important to understand the barriers and enablers to increasing physical activity in all of those who use mental health services. Qualitative and quantitative data were collected from consecutive service users and all staff in a General Adult Mental Health Service in Scotland. Thematic analysis was undertaken. A total of 127 service users and 186 staff participated. Data saturation was achieved. Staff and service users identified different barriers and enablers towards increasing physical activity rates. Different themes were identified in our population compared with those researched in other studies who had agreed to participate in exercise programmes. Our findings suggest there is a role for education, activity scheduling, motivational interviewing, social skills training and cognitive-behavioural therapy style interventions.     

An evaluation of a specialist multiagency home support service for older people with dementia using qualitative methods

BACKGROUND: Standard home care support for people with dementia has been criticised in statutory inspection reports, and may lead to unnecessary crises, hospital or care home admissions. OBJECTIVE: To establish whether a specialist multiagency home care service for older people with dementia delivered better quality care than standard services, and how any improvements were achieved. DESIGN: Qualitative study, using semi-structured interviews, focus groups and small group interviews. SETTING: Two demographically similar areas in Nottingham, one served by a specialist home care team, the other by standard services. PARTICIPANTS: Twenty-seven service users, 18 family carers, 17 home care workers, 20 health/social care professionals, across both services. RESULTS: The specialist service demonstrated greater flexibility and responsiveness to the particular needs and circumstances of service users and family carers, who were encouraged to participate in routine decision-making and activities. By sharing responsibilities, the specialist service helped reduce carer stress and prevent crises. These outcomes depended on the configuration of the service, including multidisciplinary health and social services input, careworker autonomy and independence, continuous reassessment of clients' circumstances and preferences and the capacity to develop long-term relationships, through careworker continuity. The standard service, which used a task-orientated approach, lacked these characteristics. CONCLUSIONS: This study provides evidence of the benefits of a specialist multiagency home support service over standard home care, in the opinion of service users, carers and careworkers, and defines the operational model that achieves this. Findings confirm best practice recommendations, based on models of dementia care which emphasise respect for 'personhood'.     

The concept of quality of life: what we know and do not know

Background Over the past two decades the concept of quality of life (QOL) has increasingly become a focus for research and application in the fields of education/special education, health care (physical and behavioural), social services (disabilities and ageing), and families. Methods This article summarizes our current understanding of the construct of individual QOL as it pertains to persons with intellectual disabilities (ID). The article's three major sections discuss what we know, what we are beginning to understand, and what we still do not know about the QOL construct. Results We currently know the importance of the QOL construct as a service delivery principle, along with its current use and multidimensional nature. We are beginning to understand the importance of methodological pluralism in the assessment of QOL, the multiple uses of quality indicators, the predictors of assessed QOL, the effects of different data collection strategies, and the etic (universal) and emic (culture‐bound) properties of the construct. We have yet to understand fully the use of QOL‐related outcomes in programme change, how to best evaluate the outcomes of QOL‐related services, and how to use the concept of QOL to impact public and disability reform. Conclusion The article concludes with a brief discussion of future challenges related to demonstrating the concept's social validity and positive impact on the lives of persons with ID.