Jonathan Perry - Academia.edu (original) (raw)
Papers by Jonathan Perry
This report describes the process used at the International Association for the Scientific Study ... more This report describes the process used at the International Association for the Scientific Study of Intellectual Disabilities Health Issues Special Interest Research Group's 2009 Roundtable to increase awareness of the importance of, and opportunities for, knowledge translation to improve the health of individuals with intellectual disabilities (ID) through international collaboration. The "knowledge-to-action cycle" (i.e., knowledge translation) formed the basis for the roundtable discussions. The thematic areas discussed included identification and reduction of disability in adults who also have epilepsy, obesity in children and adults, adapting health promotion materials and approaches, and policy and practice healthcare management-all related to individuals with ID. The topics were explored, extant information presented, and agreements reached for further work and collaborations in each of the topic areas. It was noted that the roundtable's use of the knowledge-to-action framework helped the participants focus on bringing together existing knowledge in ways that can meaningfully influence policy and practice. A pre-workshop web-based forum allowed participants to share information and recognize the need for synthesis and tool development. Multidisciplinary working groups that are international in scope can be useful in continuing to work toward increasing awareness of the knowledge-to-action cycle and promoting collaborative health research in the area of health and ID.
British Journal of Learning Disabilities, 1995
This paper is intended to provide some guidance to people wishing to monitor quality in small sca... more This paper is intended to provide some guidance to people wishing to monitor quality in small scale community residential settings. It describes the results of a study in which 14 objective quality of life indicators were conducted in a sample of 14 community-based staffed houses in order to assess the degree of overlap between measures within each of six quality of life domains: activity, autonomy and choice, housing quality, personal development, social and community integration, and social interactions. Overall, there was fairly high overlap within domains. Reasons for the lack of overlap which was sometimes found are discussed.
Journal of Assistive Technologies, 2008
... Stephen Beyer Deputy Director, Welsh Centre for Learning Disabilities Andrea Meek Research As... more ... Stephen Beyer Deputy Director, Welsh Centre for Learning Disabilities Andrea Meek Research Associate, Welsh Centre for Learning Disabilities ... Method A purposive sample of 30 people with learning disabilities supported by HFT and The Brandon Trust were selected. ...
Mental Handicap Research, 1994
Outcome data were collected on fourteen, recently provided staffed houses for people with mild, m... more Outcome data were collected on fourteen, recently provided staffed houses for people with mild, moderate, severe or profound learning disabilities in order to assess the quality of service provided. Quality indicators reflected the quality of the housing provision, social and ...
Social Science & Medicine, 1995
Staffed housing has become an accepted alternative to institutional residential services for peop... more Staffed housing has become an accepted alternative to institutional residential services for people with learning disabilities on the expectation that such provision will promote 'ordinary' patterns of living. Information on staffing levels and the behavioural characteristics of residents together with direct observational data on staff: resident interactions and resident engagement in activity were collected on 15 housing services in South Wales and analysed to explore the interrelationship between these key input and outcome variables. Staffing levels were found to be related to resident characteristics in general but not consistently so. The extent of staff: resident interaction per staff was related to resident characteristics, with staff in services for more able residents spending more time with them. The level of staff support given to residents with more substantial disabilities, slightly higher than that given to more able residents, reflected high staffing input. Resident engagement in activity was strongly related to ability. Participation in household activity was virtually non-existent among residents with the greatest disabilities. The results were compared to similar data from earlier studies on a range of residential services. The relative benefits of small, community-based housing services over institutional and larger community settings were confirmed by the Welsh data. However, comparison to other housing services, which had a particular emphasis on staff helping residents become involved in domestic activity, supports the conclusion that 'ordinary living' for people with severe or profound learning disabilities depends not only on the provision of ordinary environments but also on the orientation and working methods adopted.
Research in Developmental Disabilities, 1995
A model of quality of life is proposed that integrates objective and subjective indicators, a bro... more A model of quality of life is proposed that integrates objective and subjective indicators, a broad range of life domains, and individual values. It takes account of concerns that externally derived norms should not be applied without reference to individual differences. It also allows for objective comparisons to be made between the situations of particular groups and what is normative. Considerable agreement exists that quality of life is multidimensional. Coverage may be categorised within five dimensions: physical wellbeing, material wellbeing, social wellbeing, emotional wellbeing, and development and activity. A research agenda is discussed as are the particular problems caused by difficulties in understanding and communicating.
Journal of Intellectual Disability Research - J INTELLECT DISABIL RES, 2005
To determine the association between subjective and objective variables commonly used to evaluate... more To determine the association between subjective and objective variables commonly used to evaluate severity of postoperative pain in dogs. Prospective double-blind study. 36 dogs with unilateral rupture of the cranial cruciate ligament that underwent surgery to stabilize the stifle. Each dog was assessed to determine severity of pain before and after surgery, using various subjective and objective criteria. Subjective measures of pain (scores for visual analogue and numerical rating scales) correlated poorly or were not correlated with heart rate, respiratory rate, blood pressure, and results of a pain threshold test. Scores for visual analogue and numerical rating scales correlated with each other and with the amount of vocalization at most time periods. We detected a weak association between commonly employed subjective and objective measures of pain. This indicated that some of these measurement techniques do not predictably reflect severity of postoperative pain in dogs. Therefore, clinicians should not rely too heavily on these variables when assessing severity of postoperative pain in dogs.
Journal of Intellectual Disability Research, 2010
Background Health disparities between adults with intellectual disabilities (ID) and the general ... more Background Health disparities between adults with intellectual disabilities (ID) and the general population have been well documented but, to date, no dedicated assessment battery for measuring health disparity has been available. This paper reports on the development and testing of a multinational assessment battery for collecting data on a range of health indicators relevant to adults with ID. Methods An assessment battery (the P15) was developed following piloting, and administered to samples of adults with ID, in 14 EU countries. Samples were neither random, nor representative of the countries from which they were drawn. However, within the local health administration areas selected in each country, efforts were made to ensure samples were broadly representative of the typical living circumstances, ages and ability levels of the administrative population of adults with ID. The total sample comprised 1269 adults with ID, of whom 49% were female. The mean age was 41 years (range 19 to 90). Results Overall, feasibility, internal consistency and face validity of the P15 was acceptable. Conclusions With some refinement the P15 could be useful for collecting data on health indicators known to be particularly important for adults with ID. It is useable in a range of countries and has the potential to highlight health inequity for adults with ID at a national or local level. Larger scale epidemiological studies are needed to exploit the potential of the P15 to address health inequity in this group.
Journal of Intellectual Disability Research, 1999
Active support, a package of procedures which includes activity planning, support planning and tr... more Active support, a package of procedures which includes activity planning, support planning and training on providing effective assistance, was introduced in five community residences serving 19 adults with severe intellectual disability following a multiple baseline design. The residents were directly observed to ascertain the level of assistance they received from staff and their engagement in activity. The introduction of active support increased the levels of assistance residents received, their engagement in domestic activities and their total engagement in activity. The intervention did not affect the level of social engagement. Across individuals, increases in assistance and engagement in activity were significantly and positively correlated. Both were significantly inversely related to resident adaptive behaviour. At baseline, staff gave more attention and assistance to people who were behaviourally more able. After the introduction of active support, receipt of attention was unrelated to adaptive behaviour and the behaviourally less able received more assistance. The disparity in activity between the more and less able was reduced. Gains were maintained in the majority of houses.
Journal of Intellectual Disability Research, 2002
A total population study of people in Wales with severe intellectual disability and the most seve... more A total population study of people in Wales with severe intellectual disability and the most severe challenging behaviour was undertaken to identify their characteristics, and the nature of their residential arrangements and service support. Forty-one participants were identified: five living in family homes, 17 in community housing, 17 in hospitals and two in hostels. The family home group had slightly higher adaptive behaviour scores than residents in community housing. Both groups had significantly higher scores than the hospital and hostel residents combined. Assessments of challenging behaviour showed the groups to be similar and to have a considerable range and extent of severely problematic behaviour. Co-occurrence of several forms of frequent severe problem behaviour was the norm and there was a marked association with social impairment. The five people living in their family homes had nominated service keyworkers, but reported professional input was low. The residential situations comprised two main service types: (1) traditional services, which were characterized by large living unit and facility size, atypical architectural design, relative isolation from the community, a greater level of buildings adaptations, low staff:resident ratios, a relatively high percentage of qualified staff, and a relative absence of systematic approaches to goal planning and structured activity; and (2) new community houses, which were characterized by small size, domestic design, location within the community, a lower level of buildings adaptations, much higher staff:resident ratios, and less emphasis on qualified staff but a greater emphasis on systematic working methods. Community settings were similar in having specialist' resident groupings based on challenging behaviour or conditions like autism in which challenging behaviours are common. A policy to provide for people with these characteristics being resettled from traditional settings in this way seems to have been established.
Journal of Intellectual Disability Research, 2011
Despite progress in the process of deinstitutionalisation, very little is known about the health ... more Despite progress in the process of deinstitutionalisation, very little is known about the health conditions of people with intellectual disability (PWID) who live in large institutions and PWID living in small residential services, family homes or independent living within the community. Furthermore, there are no international comparison studies at European level of the health status and health risk factors of PWID living in fully staffed residential services with formal support and care compared with those living in unstaffed family homes or independent houses with no formal support. A total of 1269 persons with ID and/or their proxy respondents were recruited and face-to-face interviewed in 14 EU countries with the P15, a multinational assessment battery for collecting data on health indicators relevant to PWID. Participants were grouped according to their living arrangements, availability of formal support and stage of deinstitutionalisation. Obesity and sedentary lifestyle along with a number of illnesses such as epilepsy, mental disorders, allergies or constipation were highly prevalent among PWID. A significantly higher presence of myocardial infarctions, chronic bronchitis, osteoporosis and gastric or duodenal ulcers was found among participants in countries considered to be at the early stage of deinstitutionalisation. Regardless of deinstitutionalisation stage, important deficits in variables related to such medical health promotion measures as vaccinations, cancer screenings and medical checks were found in family homes and independent living arrangements. Age, number of people living in the same home or number of places in residential services, presence of affective symptoms and obesity require further attention as they seem to be related to an increase in the number of illnesses suffered by PWID. Particular illnesses were found to be highly prevalent in PWID. There were important differences between different living arrangements depending on the level of formal support available and the stage of deinstitutionalisation. PWID are in need of tailored primary health programs that guarantee their access to quality health and health promotion and the preventative health actions of vaccination programs, systematic health checks, specific screenings and nutritional controls. Extensive national health surveys and epidemiological studies of PWID in the EC member states are urgently needed in order to reduce increased morbidity rates among this population.
Journal of Intellectual and Developmental Disability, 2004
There are relatively few examples of emancipatory research in which people with an intellectual d... more There are relatively few examples of emancipatory research in which people with an intellectual disability become co-workers in the research process. The current study examined the feasibility of training someone with an intellectual disability to conduct quality of life interviews with ...
Journal of Intellectual and Developmental Disability, 2011
POMONA II was a European Commission public health-funded project. The research questions in this ... more POMONA II was a European Commission public health-funded project. The research questions in this article focus on age-specific differences relating to environmental and lifestyle factors, and the 17 medical conditions measured by the POMONA Checklist of Health Indicators (P15). The P15 was completed in a cross-sectional design for a stratified sample of 1,253 adults with ID across 14 European member states. Older people (55+) were more likely to live in larger residential homes. Rates of smoking and use of alcohol were lower than in the general population but were higher with older age. More than 60% of older adults had a sedentary lifestyle. Cataract, hearing disorder, diabetes, hypertension, osteoarthritis/arthrosis, and osteoporosis were positively associated with advancing age; allergies and epilepsy, negatively associated. Some evidence of health disparities was found for older people with ID, particularly in terms of underdiagnosed or inadequately managed preventable health conditions.
Journal of Community & Applied Social Psychology, 1995
Journal of Community & Applied Social Psychology, VoE. 5,l-19 (1995) ... Objective Assessment... more Journal of Community & Applied Social Psychology, VoE. 5,l-19 (1995) ... Objective Assessments of Quality of Life: How Much ... JONATHAN PERRY AND DAVID FELCE Welsh Centre for Learning Disabilities Applied Research Unit, University of Wales College of Medicine, 55 Park ...
Journal of Applied Research in Intellectual Disabilities, 1999
The Quality of Residential and Day Services ... Objective Data Gained in Support of a ... David f... more The Quality of Residential and Day Services ... Objective Data Gained in Support of a ... David felce, Kafhy Lowe, Jonathan Perry, Edwin Jones, Helen Baxfer and Clare Bowley Welsh Centre for Learning Disabilities Applied Research Unit Universjty of Wales College of Medicine, ...
Journal of Applied Research in Intellectual Disabilities, 2003
Background Small scale, community-based, staffed housing is a significant form of residential pro... more Background Small scale, community-based, staffed housing is a significant form of residential provision for people with intellectual disabilities. Such services are provided by health and local authorities, and voluntary and private agencies, yet little is known about how provision varies between provider sectors. Methods This study compared sectors in terms of the processes operating within residential services, and objectively and subjectively assessed quality of life (QOL) resident outcomes. Measures of setting structure and processes and resident outcomes were undertaken on a stratified random sample of 47 small scale, community-based residential settings which accommodated a total of 154 people with intellectual disabilities. Results In general, provider agencies did not differ in terms of the characteristics of the residents they served, the structure of settings, the processes underlying service operation or resident outcomes. However, across agencies there was considerable variation in residents' life conditions when they were measured objectively. Better outcome tended to be significantly correlated with the ability of residents. This was not the case with results on subjective measures (which were also higher than those on objective measures). Conclusions The results reinforce the need to design services which effectively support people across the ability spectrum. Also, an argument is made for the continued utility of objective measurement in the assessment of service quality. à Subjective score (i.e. importance  satisfaction).
Journal of Applied Research in Intellectual Disabilities, 1996
Fifty-one residents of 14 staffed houses for people with intellectual disabilities were assessed ... more Fifty-one residents of 14 staffed houses for people with intellectual disabilities were assessed using the Adaptive Behavior Scale (ABS) at the beginning, middle and end of a two year period. Changes in ABS score were calculated to ascertain whether residents ...
Journal of Applied Research in Intellectual Disabilities, 2011
ABSTRACT Background The quality of life of adults with intellectual disabilities living in the f... more ABSTRACT Background The quality of life of adults with intellectual disabilities living in the family home is an under-researched area. The current study compared indicators of household and community activity between adults living in family homes and those in out-of-family placements.Methods Four datasets were merged to produce information on the household participation and social and community activities of 721 adult participants living independently (n = 30) or in family (n = 142) or staffed homes (n = 559). Data on age, gender, adaptive and challenging behaviour, and social impairment were also available. Participant characteristics and household and community activity indicators were compared across places of residence. In addition, for those living in family or staffed homes, multiple regression was used to examine the association between the activity indicators and place of residence after controlling for participant characteristics.Results People living independently had higher household participation. People living in staffed housing had higher household participation and did more community activities more frequently than people living in family homes. Place of residence was a significant factor after controlling for participant differences.Conclusions Interpretation should take account of the limited nature of the activity indicators. However, the comparison adds weight to other recent research suggesting that adults living in family homes may have fewer activity opportunities than those living in supported accommodation.
Journal of Applied Research in Intellectual Disabilities, 2014
People with intellectual disabilities experience disparities in their health and health care. Ann... more People with intellectual disabilities experience disparities in their health and health care. Annual health checks are intended to counter such disparity by improving access to primary health care. However, little is known about their experience of having a health check or other types of contact with primary care services. The findings of two studies which used focus groups were combined. 102 people with intellectual disabilities participated in the focus groups. Participants' experiences of primary care services generally, and health checks in particular, were positive. However, unanimity was rare on any of the topics discussed and a number of areas of dissatisfaction emerged. Further studies with larger and more representative samples are necessary as feedback from people with intellectual disabilities about their experience of contact with primary care staff might help to enhance GP knowledge about their health requirements.
Mental Retardation, 1997
PASS 3 was used to evaluate 14 residential services for people with mental retardation. Residents... more PASS 3 was used to evaluate 14 residential services for people with mental retardation. Residents had a broad range of abilities. Size of residences ranged from one to seven residents. PASS scores were generally associated with both resident's ability level and smaller size of living unit. Overall, the residences were shown to be well-located and reasonably home-like. However, residence personnel tended to lack organized means and competencies to promote resident development and experience. Administrative practices were also weak. Attention must be given to factors other than residence size, location, building characteristics, and staffing parameters when services are commissioned and when service contracts are specified and reviewed.
This report describes the process used at the International Association for the Scientific Study ... more This report describes the process used at the International Association for the Scientific Study of Intellectual Disabilities Health Issues Special Interest Research Group's 2009 Roundtable to increase awareness of the importance of, and opportunities for, knowledge translation to improve the health of individuals with intellectual disabilities (ID) through international collaboration. The "knowledge-to-action cycle" (i.e., knowledge translation) formed the basis for the roundtable discussions. The thematic areas discussed included identification and reduction of disability in adults who also have epilepsy, obesity in children and adults, adapting health promotion materials and approaches, and policy and practice healthcare management-all related to individuals with ID. The topics were explored, extant information presented, and agreements reached for further work and collaborations in each of the topic areas. It was noted that the roundtable's use of the knowledge-to-action framework helped the participants focus on bringing together existing knowledge in ways that can meaningfully influence policy and practice. A pre-workshop web-based forum allowed participants to share information and recognize the need for synthesis and tool development. Multidisciplinary working groups that are international in scope can be useful in continuing to work toward increasing awareness of the knowledge-to-action cycle and promoting collaborative health research in the area of health and ID.
British Journal of Learning Disabilities, 1995
This paper is intended to provide some guidance to people wishing to monitor quality in small sca... more This paper is intended to provide some guidance to people wishing to monitor quality in small scale community residential settings. It describes the results of a study in which 14 objective quality of life indicators were conducted in a sample of 14 community-based staffed houses in order to assess the degree of overlap between measures within each of six quality of life domains: activity, autonomy and choice, housing quality, personal development, social and community integration, and social interactions. Overall, there was fairly high overlap within domains. Reasons for the lack of overlap which was sometimes found are discussed.
Journal of Assistive Technologies, 2008
... Stephen Beyer Deputy Director, Welsh Centre for Learning Disabilities Andrea Meek Research As... more ... Stephen Beyer Deputy Director, Welsh Centre for Learning Disabilities Andrea Meek Research Associate, Welsh Centre for Learning Disabilities ... Method A purposive sample of 30 people with learning disabilities supported by HFT and The Brandon Trust were selected. ...
Mental Handicap Research, 1994
Outcome data were collected on fourteen, recently provided staffed houses for people with mild, m... more Outcome data were collected on fourteen, recently provided staffed houses for people with mild, moderate, severe or profound learning disabilities in order to assess the quality of service provided. Quality indicators reflected the quality of the housing provision, social and ...
Social Science & Medicine, 1995
Staffed housing has become an accepted alternative to institutional residential services for peop... more Staffed housing has become an accepted alternative to institutional residential services for people with learning disabilities on the expectation that such provision will promote 'ordinary' patterns of living. Information on staffing levels and the behavioural characteristics of residents together with direct observational data on staff: resident interactions and resident engagement in activity were collected on 15 housing services in South Wales and analysed to explore the interrelationship between these key input and outcome variables. Staffing levels were found to be related to resident characteristics in general but not consistently so. The extent of staff: resident interaction per staff was related to resident characteristics, with staff in services for more able residents spending more time with them. The level of staff support given to residents with more substantial disabilities, slightly higher than that given to more able residents, reflected high staffing input. Resident engagement in activity was strongly related to ability. Participation in household activity was virtually non-existent among residents with the greatest disabilities. The results were compared to similar data from earlier studies on a range of residential services. The relative benefits of small, community-based housing services over institutional and larger community settings were confirmed by the Welsh data. However, comparison to other housing services, which had a particular emphasis on staff helping residents become involved in domestic activity, supports the conclusion that 'ordinary living' for people with severe or profound learning disabilities depends not only on the provision of ordinary environments but also on the orientation and working methods adopted.
Research in Developmental Disabilities, 1995
A model of quality of life is proposed that integrates objective and subjective indicators, a bro... more A model of quality of life is proposed that integrates objective and subjective indicators, a broad range of life domains, and individual values. It takes account of concerns that externally derived norms should not be applied without reference to individual differences. It also allows for objective comparisons to be made between the situations of particular groups and what is normative. Considerable agreement exists that quality of life is multidimensional. Coverage may be categorised within five dimensions: physical wellbeing, material wellbeing, social wellbeing, emotional wellbeing, and development and activity. A research agenda is discussed as are the particular problems caused by difficulties in understanding and communicating.
Journal of Intellectual Disability Research - J INTELLECT DISABIL RES, 2005
To determine the association between subjective and objective variables commonly used to evaluate... more To determine the association between subjective and objective variables commonly used to evaluate severity of postoperative pain in dogs. Prospective double-blind study. 36 dogs with unilateral rupture of the cranial cruciate ligament that underwent surgery to stabilize the stifle. Each dog was assessed to determine severity of pain before and after surgery, using various subjective and objective criteria. Subjective measures of pain (scores for visual analogue and numerical rating scales) correlated poorly or were not correlated with heart rate, respiratory rate, blood pressure, and results of a pain threshold test. Scores for visual analogue and numerical rating scales correlated with each other and with the amount of vocalization at most time periods. We detected a weak association between commonly employed subjective and objective measures of pain. This indicated that some of these measurement techniques do not predictably reflect severity of postoperative pain in dogs. Therefore, clinicians should not rely too heavily on these variables when assessing severity of postoperative pain in dogs.
Journal of Intellectual Disability Research, 2010
Background Health disparities between adults with intellectual disabilities (ID) and the general ... more Background Health disparities between adults with intellectual disabilities (ID) and the general population have been well documented but, to date, no dedicated assessment battery for measuring health disparity has been available. This paper reports on the development and testing of a multinational assessment battery for collecting data on a range of health indicators relevant to adults with ID. Methods An assessment battery (the P15) was developed following piloting, and administered to samples of adults with ID, in 14 EU countries. Samples were neither random, nor representative of the countries from which they were drawn. However, within the local health administration areas selected in each country, efforts were made to ensure samples were broadly representative of the typical living circumstances, ages and ability levels of the administrative population of adults with ID. The total sample comprised 1269 adults with ID, of whom 49% were female. The mean age was 41 years (range 19 to 90). Results Overall, feasibility, internal consistency and face validity of the P15 was acceptable. Conclusions With some refinement the P15 could be useful for collecting data on health indicators known to be particularly important for adults with ID. It is useable in a range of countries and has the potential to highlight health inequity for adults with ID at a national or local level. Larger scale epidemiological studies are needed to exploit the potential of the P15 to address health inequity in this group.
Journal of Intellectual Disability Research, 1999
Active support, a package of procedures which includes activity planning, support planning and tr... more Active support, a package of procedures which includes activity planning, support planning and training on providing effective assistance, was introduced in five community residences serving 19 adults with severe intellectual disability following a multiple baseline design. The residents were directly observed to ascertain the level of assistance they received from staff and their engagement in activity. The introduction of active support increased the levels of assistance residents received, their engagement in domestic activities and their total engagement in activity. The intervention did not affect the level of social engagement. Across individuals, increases in assistance and engagement in activity were significantly and positively correlated. Both were significantly inversely related to resident adaptive behaviour. At baseline, staff gave more attention and assistance to people who were behaviourally more able. After the introduction of active support, receipt of attention was unrelated to adaptive behaviour and the behaviourally less able received more assistance. The disparity in activity between the more and less able was reduced. Gains were maintained in the majority of houses.
Journal of Intellectual Disability Research, 2002
A total population study of people in Wales with severe intellectual disability and the most seve... more A total population study of people in Wales with severe intellectual disability and the most severe challenging behaviour was undertaken to identify their characteristics, and the nature of their residential arrangements and service support. Forty-one participants were identified: five living in family homes, 17 in community housing, 17 in hospitals and two in hostels. The family home group had slightly higher adaptive behaviour scores than residents in community housing. Both groups had significantly higher scores than the hospital and hostel residents combined. Assessments of challenging behaviour showed the groups to be similar and to have a considerable range and extent of severely problematic behaviour. Co-occurrence of several forms of frequent severe problem behaviour was the norm and there was a marked association with social impairment. The five people living in their family homes had nominated service keyworkers, but reported professional input was low. The residential situations comprised two main service types: (1) traditional services, which were characterized by large living unit and facility size, atypical architectural design, relative isolation from the community, a greater level of buildings adaptations, low staff:resident ratios, a relatively high percentage of qualified staff, and a relative absence of systematic approaches to goal planning and structured activity; and (2) new community houses, which were characterized by small size, domestic design, location within the community, a lower level of buildings adaptations, much higher staff:resident ratios, and less emphasis on qualified staff but a greater emphasis on systematic working methods. Community settings were similar in having specialist' resident groupings based on challenging behaviour or conditions like autism in which challenging behaviours are common. A policy to provide for people with these characteristics being resettled from traditional settings in this way seems to have been established.
Journal of Intellectual Disability Research, 2011
Despite progress in the process of deinstitutionalisation, very little is known about the health ... more Despite progress in the process of deinstitutionalisation, very little is known about the health conditions of people with intellectual disability (PWID) who live in large institutions and PWID living in small residential services, family homes or independent living within the community. Furthermore, there are no international comparison studies at European level of the health status and health risk factors of PWID living in fully staffed residential services with formal support and care compared with those living in unstaffed family homes or independent houses with no formal support. A total of 1269 persons with ID and/or their proxy respondents were recruited and face-to-face interviewed in 14 EU countries with the P15, a multinational assessment battery for collecting data on health indicators relevant to PWID. Participants were grouped according to their living arrangements, availability of formal support and stage of deinstitutionalisation. Obesity and sedentary lifestyle along with a number of illnesses such as epilepsy, mental disorders, allergies or constipation were highly prevalent among PWID. A significantly higher presence of myocardial infarctions, chronic bronchitis, osteoporosis and gastric or duodenal ulcers was found among participants in countries considered to be at the early stage of deinstitutionalisation. Regardless of deinstitutionalisation stage, important deficits in variables related to such medical health promotion measures as vaccinations, cancer screenings and medical checks were found in family homes and independent living arrangements. Age, number of people living in the same home or number of places in residential services, presence of affective symptoms and obesity require further attention as they seem to be related to an increase in the number of illnesses suffered by PWID. Particular illnesses were found to be highly prevalent in PWID. There were important differences between different living arrangements depending on the level of formal support available and the stage of deinstitutionalisation. PWID are in need of tailored primary health programs that guarantee their access to quality health and health promotion and the preventative health actions of vaccination programs, systematic health checks, specific screenings and nutritional controls. Extensive national health surveys and epidemiological studies of PWID in the EC member states are urgently needed in order to reduce increased morbidity rates among this population.
Journal of Intellectual and Developmental Disability, 2004
There are relatively few examples of emancipatory research in which people with an intellectual d... more There are relatively few examples of emancipatory research in which people with an intellectual disability become co-workers in the research process. The current study examined the feasibility of training someone with an intellectual disability to conduct quality of life interviews with ...
Journal of Intellectual and Developmental Disability, 2011
POMONA II was a European Commission public health-funded project. The research questions in this ... more POMONA II was a European Commission public health-funded project. The research questions in this article focus on age-specific differences relating to environmental and lifestyle factors, and the 17 medical conditions measured by the POMONA Checklist of Health Indicators (P15). The P15 was completed in a cross-sectional design for a stratified sample of 1,253 adults with ID across 14 European member states. Older people (55+) were more likely to live in larger residential homes. Rates of smoking and use of alcohol were lower than in the general population but were higher with older age. More than 60% of older adults had a sedentary lifestyle. Cataract, hearing disorder, diabetes, hypertension, osteoarthritis/arthrosis, and osteoporosis were positively associated with advancing age; allergies and epilepsy, negatively associated. Some evidence of health disparities was found for older people with ID, particularly in terms of underdiagnosed or inadequately managed preventable health conditions.
Journal of Community & Applied Social Psychology, 1995
Journal of Community & Applied Social Psychology, VoE. 5,l-19 (1995) ... Objective Assessment... more Journal of Community & Applied Social Psychology, VoE. 5,l-19 (1995) ... Objective Assessments of Quality of Life: How Much ... JONATHAN PERRY AND DAVID FELCE Welsh Centre for Learning Disabilities Applied Research Unit, University of Wales College of Medicine, 55 Park ...
Journal of Applied Research in Intellectual Disabilities, 1999
The Quality of Residential and Day Services ... Objective Data Gained in Support of a ... David f... more The Quality of Residential and Day Services ... Objective Data Gained in Support of a ... David felce, Kafhy Lowe, Jonathan Perry, Edwin Jones, Helen Baxfer and Clare Bowley Welsh Centre for Learning Disabilities Applied Research Unit Universjty of Wales College of Medicine, ...
Journal of Applied Research in Intellectual Disabilities, 2003
Background Small scale, community-based, staffed housing is a significant form of residential pro... more Background Small scale, community-based, staffed housing is a significant form of residential provision for people with intellectual disabilities. Such services are provided by health and local authorities, and voluntary and private agencies, yet little is known about how provision varies between provider sectors. Methods This study compared sectors in terms of the processes operating within residential services, and objectively and subjectively assessed quality of life (QOL) resident outcomes. Measures of setting structure and processes and resident outcomes were undertaken on a stratified random sample of 47 small scale, community-based residential settings which accommodated a total of 154 people with intellectual disabilities. Results In general, provider agencies did not differ in terms of the characteristics of the residents they served, the structure of settings, the processes underlying service operation or resident outcomes. However, across agencies there was considerable variation in residents' life conditions when they were measured objectively. Better outcome tended to be significantly correlated with the ability of residents. This was not the case with results on subjective measures (which were also higher than those on objective measures). Conclusions The results reinforce the need to design services which effectively support people across the ability spectrum. Also, an argument is made for the continued utility of objective measurement in the assessment of service quality. à Subjective score (i.e. importance  satisfaction).
Journal of Applied Research in Intellectual Disabilities, 1996
Fifty-one residents of 14 staffed houses for people with intellectual disabilities were assessed ... more Fifty-one residents of 14 staffed houses for people with intellectual disabilities were assessed using the Adaptive Behavior Scale (ABS) at the beginning, middle and end of a two year period. Changes in ABS score were calculated to ascertain whether residents ...
Journal of Applied Research in Intellectual Disabilities, 2011
ABSTRACT Background The quality of life of adults with intellectual disabilities living in the f... more ABSTRACT Background The quality of life of adults with intellectual disabilities living in the family home is an under-researched area. The current study compared indicators of household and community activity between adults living in family homes and those in out-of-family placements.Methods Four datasets were merged to produce information on the household participation and social and community activities of 721 adult participants living independently (n = 30) or in family (n = 142) or staffed homes (n = 559). Data on age, gender, adaptive and challenging behaviour, and social impairment were also available. Participant characteristics and household and community activity indicators were compared across places of residence. In addition, for those living in family or staffed homes, multiple regression was used to examine the association between the activity indicators and place of residence after controlling for participant characteristics.Results People living independently had higher household participation. People living in staffed housing had higher household participation and did more community activities more frequently than people living in family homes. Place of residence was a significant factor after controlling for participant differences.Conclusions Interpretation should take account of the limited nature of the activity indicators. However, the comparison adds weight to other recent research suggesting that adults living in family homes may have fewer activity opportunities than those living in supported accommodation.
Journal of Applied Research in Intellectual Disabilities, 2014
People with intellectual disabilities experience disparities in their health and health care. Ann... more People with intellectual disabilities experience disparities in their health and health care. Annual health checks are intended to counter such disparity by improving access to primary health care. However, little is known about their experience of having a health check or other types of contact with primary care services. The findings of two studies which used focus groups were combined. 102 people with intellectual disabilities participated in the focus groups. Participants' experiences of primary care services generally, and health checks in particular, were positive. However, unanimity was rare on any of the topics discussed and a number of areas of dissatisfaction emerged. Further studies with larger and more representative samples are necessary as feedback from people with intellectual disabilities about their experience of contact with primary care staff might help to enhance GP knowledge about their health requirements.
Mental Retardation, 1997
PASS 3 was used to evaluate 14 residential services for people with mental retardation. Residents... more PASS 3 was used to evaluate 14 residential services for people with mental retardation. Residents had a broad range of abilities. Size of residences ranged from one to seven residents. PASS scores were generally associated with both resident's ability level and smaller size of living unit. Overall, the residences were shown to be well-located and reasonably home-like. However, residence personnel tended to lack organized means and competencies to promote resident development and experience. Administrative practices were also weak. Attention must be given to factors other than residence size, location, building characteristics, and staffing parameters when services are commissioned and when service contracts are specified and reviewed.