The prevalence of dementia is rising worldwide and many people will die with the disease. Symptom... more The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Profess...
Discussion about care preferences and end of life wishes between family and staff on entry to a c... more Discussion about care preferences and end of life wishes between family and staff on entry to a care home is an important predictor of family satisfaction with end of life care for residents with advanced dementia. This paper aims to examine issues relating to end of life discussions with family members of residents with advanced dementia. Data were collected during piloting of the Compassion intervention that engaged an Interdisciplinary Care Leader (ICL) in two care homes and aimed to improve end of life care for residents with advanced dementia. Data included the ICL's reflective diary, time record and interviews with family carers, care home staff, GPs and other health professionals. The ICL assessed 30 residents with advanced dementia and had 37 conversations of at least 15 minutes with family members. Qualitative data were thematically analysed by two researchers. Family members described not having discussed end of life care with healthcare professionals, despite interest...
In line with the National Dementia Strategy (2009), a mixed methods programme was designed to dev... more In line with the National Dementia Strategy (2009), a mixed methods programme was designed to develop and pilot a complex intervention to improve end of life care for people with advanced dementia. A facilitation-based model provided education, training and support to health care professionals (HCPs) creating an integrated, individualised and holistic service. To inform the intervention development, we conducted a series of qualitative interviews to examine HCPs attitudes and knowledge regarding integrated care. A topic guide was used to interview 14 HCPs including commissioners, care home managers, nurses and health care assistants. We used a rigorous approach to data analysis (quality framework recommended by Spencer et al 2003). Thematic analysis identified meaningful themes. Interviews revealed how shortfalls in different sectors providing care for this vulnerable population contribute to discontinuity of care. The main themes found to contribute to care fragmentation were care ...
Objectives. Deinstitutionalization of long-term psychiatric patients produced various community-b... more Objectives. Deinstitutionalization of long-term psychiatric patients produced various community-based residential care facilities. However, inner-city areas have many patients with severe mental illness (SMI) as well as deprivation, unemployment, and crime. This makes meeting their community needs complex. We undertook a needs assessment of service provision and consonance between service users’ evaluation of need and by care workers.Design. Cross-sectional study with random sample of SMI service users in four housing settings: rehabilitation units; high-supported; medium-supported; low-supported housing.Setting. London Borough of Haringey.Outcome Measures. 110 SMI service users and 110 keyworkers were interviewed, using Camberwell Assessment of Need; SF-36; Lancashire Quality-of-Life profile; demographic and clinical information.Results. People in “low-support” and “high-support” housing had similar symptom scores, though low support had significantly lower quality of life. Quality...
Social Psychiatry and Psychiatric Epidemiology, 2004
Background Refugee and migrant children are likely to be exposed to many of the risk factors for ... more Background Refugee and migrant children are likely to be exposed to many of the risk factors for emotional and behavioural problems. These children form a significant proportion of the school population in London and other inner cities in the UK. However, there are very little epidemiological data available on their mental health. In this study, we aimed to examine the prevalence of psychological problems among refugee and migrant schoolchildren compared to their UK-born peers. Method A cross-sectional investigation using the Strengths and Difficulties Questionnaire (SDQ) examined in association with socio-demographic variables including language preference. Results Almost a quarter of schoolchildren might be described as having a need, with migrant and refugee children showing greater psychological distress on a number of the sub-scales of the SDQ. Language appears to be an important variable associated with distress.
Social Psychiatry and Psychiatric Epidemiology, 2010
Differences in outcome between African-Caribbean and white British patients with psychosis may be... more Differences in outcome between African-Caribbean and white British patients with psychosis may be due to perceived racism and a difficulty in trusting services seen as discriminatory. In 100 participants, racism was measured at baseline using the Perceived Racism Scale; with adherence, using the Drug Attitudes Inventory and Kemp Scale, and hospital admission data determined after 12 months. We found associations between total perceived racism for the previous year (b = -0.0074, P = 0.013), lifetime racism (b = -0.0068, P = 0.038), and everyday racism for the previous year (b = -0.051, P = 0.0046), with subsequent medication adherence. Shame felt about health system racism was associated with increased adherence (b = 0.20, P = 0.015), and powerlessness about it was associated with fewer subsequent hospital bed days (b = -14.49, P = 0.025). Finally, health system racism was associated with both the number of subsequent hospital bed days (b = 5.54, P = 0.010), and admission length (b = 4.92, P = 0.021). In addition, stratified analyses showed that both baseline adherence and 6-month estimated adherence appeared to mediate these effects. In this cohort of African-Caribbean patients with psychosis, perceived racism is a determinant of adherence over 12 months. We propose a model whereby perceived racism contributes to an individual rejecting mental health services (manifested by the mediating effect of poor adherence) which leads to a poorer outcome, evidenced by a longer hospital stay. Secondly, powerlessness about perceived health-service racism may represent a sense of resignation about the "system", leading paradoxically to greater adherence and better outcome.
Clinical Practice and Epidemiology in Mental Health, 2009
Aim: The increased rate of psychosis and poorer service-related outcomes in UK African-Caribbeans... more Aim: The increased rate of psychosis and poorer service-related outcomes in UK African-Caribbeans may in part be related to racism; racism as an aetiological factor remains comparatively under-investigated. We wanted to develop a measure of perceived racism in UK African-Caribbean patients with psychosis Methods: We modified the Perceived Racism Scale (PRS) by substituting a mental-health-services' racism domain for the employment-racism domain and administered it to a sample of 150 individuals. Results: 110 people completed the PRS with a total mean perceived racism score of 54.2 for the previous year and 71.3 for the lifetime. The modified instrument had good internal consistency, and both a similar factor-analytic structure and sampling adequacy to the original instrument. Clinical Implications: The modified PRS was acceptable to the sample, withstands statistical scrutiny and produced similar totals to those in previously-tested populations. Subjective measurement of perceived racism may improve understanding of psychosis in African-Caribbeans, improve engagement and, hopefully, outcome.
Background There is evidence that Irish migrants in Britain have higher rates of depression and s... more Background There is evidence that Irish migrants in Britain have higher rates of depression and suicide than other minority ethnic groups. Aims To examine the association between poorly planned migration and depression in Irish-born people living in London. Method A sample of 360 Irish-born people was recruited from 11 general practices into a case-control study Participants were interviewed using standardised measures, including the Beck Depression Inventory (BDI). We calculated the odds ratio for any association between depression and eight questions on preparation for migration. Results Poorly planned migration was associated with subsequent depression in Irish-born people living in London (OR=1.20, 95% CI 1.06-l.35). The odds of depression were increased by a factor of 20% for each additional negative answer to eight questions on preparation for migration. Positive post-migration influences such as adequate social support protected some against depression. Conclusions Depression...
British Journal of Guidance & Counselling, 2007
ABSTRACT The provision of counselling services for refugee and asylum-seeking patients is relativ... more ABSTRACT The provision of counselling services for refugee and asylum-seeking patients is relatively new in the UK and their complex needs may present considerable challenges within primary care, where access to specialist support resources is often limited. As far as ...
European eating disorders review : the journal of the Eating Disorders Association, 2015
Little is known about how patients with long-term eating disorders manage their clinical problems... more Little is known about how patients with long-term eating disorders manage their clinical problems. We carried out a preliminary qualitative study (using Thematic Analysis) of patients with severe and enduring anorexia nervosa (SEED-AN) in which we undertook recorded interviews in eight participants whose conditions had lasted 20-40 years. We found 15 principle features in physical, psychological, social, family, occupational and treatment realms. Psychological and social realms were most affected. Severe physical problems were reported. They described feelings of unworthiness, frugality regarding money and obsessive time-keeping. Persisting with negligible social networks, participants described depression and hopelessness, while somehow achieving a sense of pride at their endurance and survival in spite of the eating disorder. They emphasized the importance of professional help in managing their care. The severe and enduring description, often reserved for people with psychotic ill...
ABSTRACT The provision of counselling services for refugee and asylum-seeking patients is relativ... more ABSTRACT The provision of counselling services for refugee and asylum-seeking patients is relatively new in the UK and their complex needs may present considerable challenges within primary care, where access to specialist support resources is often limited. As far as ...
Help-seeking among young people is complicated, often determined vicariously by the ability of ad... more Help-seeking among young people is complicated, often determined vicariously by the ability of adults, family or professionals, to recognize, and respond to, their difficulties. We know very little about the complex concerns of teenage young people and how they ...
European eating disorders review : the journal of the Eating Disorders Association, 2015
Little is known about how patients with long-term eating disorders manage their clinical problems... more Little is known about how patients with long-term eating disorders manage their clinical problems. We carried out a preliminary qualitative study (using Thematic Analysis) of patients with severe and enduring anorexia nervosa (SEED-AN) in which we undertook recorded interviews in eight participants whose conditions had lasted 20-40 years. We found 15 principle features in physical, psychological, social, family, occupational and treatment realms. Psychological and social realms were most affected. Severe physical problems were reported. They described feelings of unworthiness, frugality regarding money and obsessive time-keeping. Persisting with negligible social networks, participants described depression and hopelessness, while somehow achieving a sense of pride at their endurance and survival in spite of the eating disorder. They emphasized the importance of professional help in managing their care. The severe and enduring description, often reserved for people with psychotic ill...
The prevalence of dementia is rising worldwide and many people will die with the disease. Symptom... more The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Profess...
Objectives. Deinstitutionalization of long-term psychiatric patients produced various community-b... more Objectives. Deinstitutionalization of long-term psychiatric patients produced various community-based residential care facilities. However, inner-city areas have many patients with severe mental illness (SMI) as well as deprivation, unemployment, and crime. This makes meeting their community needs complex. We undertook a needs assessment of service provision and consonance between service users' evaluation of need and by care workers. Design. Cross-sectional study with random sample of SMI service users in four housing settings: rehabilitation units; high-supported; medium-supported; low-supported housing. Setting. London Borough of Haringey. Outcome Measures. 110 SMI service users and 110 keyworkers were interviewed, using Camberwell Assessment of Need; SF-36; Lancashire Quality-of-Life profile; demographic and clinical information. Results. People in "lowsupport" and "high-support" housing had similar symptom scores, though low support had significantly lower quality of life. Quality of life was positively predicted by self-reported mental-health score and negatively predicted by unmet-need score in whole sample and in medium-support residents. Residents' and care-workers' assessments of need differed considerably. Conclusions. Although patients' housing needs were broadly met, those in low-supported housing fared least well. Attendance to self-reported mental health and unmet social needs to quality of life underpins planning of residential services for those with SMI. Social and personal needs of people in supported housing may be underestimated and overlooked; service providers need to prioritise these if concept of "recovery" is to advance.
Social Psychiatry and Psychiatric Epidemiology, 2011
Differences in outcome between African-Caribbean and white British patients with psychosis may be... more Differences in outcome between African-Caribbean and white British patients with psychosis may be due to perceived racism and a difficulty in trusting services seen as discriminatory. In 100 participants, racism was measured at baseline using the Perceived Racism Scale; with adherence, using the Drug Attitudes Inventory and Kemp Scale, and hospital admission data determined after 12 months. We found associations between total perceived racism for the previous year (b = -0.0074, P = 0.013), lifetime racism (b = -0.0068, P = 0.038), and everyday racism for the previous year (b = -0.051, P = 0.0046), with subsequent medication adherence. Shame felt about health system racism was associated with increased adherence (b = 0.20, P = 0.015), and powerlessness about it was associated with fewer subsequent hospital bed days (b = -14.49, P = 0.025). Finally, health system racism was associated with both the number of subsequent hospital bed days (b = 5.54, P = 0.010), and admission length (b = 4.92, P = 0.021). In addition, stratified analyses showed that both baseline adherence and 6-month estimated adherence appeared to mediate these effects. In this cohort of African-Caribbean patients with psychosis, perceived racism is a determinant of adherence over 12 months. We propose a model whereby perceived racism contributes to an individual rejecting mental health services (manifested by the mediating effect of poor adherence) which leads to a poorer outcome, evidenced by a longer hospital stay. Secondly, powerlessness about perceived health-service racism may represent a sense of resignation about the "system", leading paradoxically to greater adherence and better outcome.
In line with the National Dementia Strategy (2009), a mixed methods programme was designed to dev... more In line with the National Dementia Strategy (2009), a mixed methods programme was designed to develop and pilot a complex intervention to improve end of life care for people with advanced dementia. A facilitation-based model provided education, training and support to health care professionals (HCPs) creating an integrated, individualised and holistic service. To inform the intervention development, we conducted a series of qualitative interviews to examine HCPs attitudes and knowledge regarding integrated care. A topic guide was used to interview 14 HCPs including commissioners, care home managers, nurses and health care assistants. We used a rigorous approach to data analysis (quality framework recommended by Spencer et al 2003). Thematic analysis identified meaningful themes. Interviews revealed how shortfalls in different sectors providing care for this vulnerable population contribute to discontinuity of care. The main themes found to contribute to care fragmentation were care ...
Discussion about care preferences and end of life wishes between family and staff on entry to a c... more Discussion about care preferences and end of life wishes between family and staff on entry to a care home is an important predictor of family satisfaction with end of life care for residents with advanced dementia. This paper aims to examine issues relating to end of life discussions with family members of residents with advanced dementia. Data were collected during piloting of the Compassion intervention that engaged an Interdisciplinary Care Leader (ICL) in two care homes and aimed to improve end of life care for residents with advanced dementia. Data included the ICL's reflective diary, time record and interviews with family carers, care home staff, GPs and other health professionals. The ICL assessed 30 residents with advanced dementia and had 37 conversations of at least 15 minutes with family members. Qualitative data were thematically analysed by two researchers. Family members described not having discussed end of life care with healthcare professionals, despite interest...
Clinical Practice and Epidemiology in Mental Health, 2009
The increased rate of psychosis and poorer service-related outcomes in UK African-Caribbeans may ... more The increased rate of psychosis and poorer service-related outcomes in UK African-Caribbeans may in part be related to racism; racism as an aetiological factor remains comparatively under-investigated. We wanted to develop a measure of perceived racism in UK African-Caribbean patients with psychosis Methods: We modified the Perceived Racism Scale (PRS) by substituting a mental-health-services' racism domain for the employment-racism domain and administered it to a sample of 150 individuals.
The prevalence of dementia is rising worldwide and many people will die with the disease. Symptom... more The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Profess...
Discussion about care preferences and end of life wishes between family and staff on entry to a c... more Discussion about care preferences and end of life wishes between family and staff on entry to a care home is an important predictor of family satisfaction with end of life care for residents with advanced dementia. This paper aims to examine issues relating to end of life discussions with family members of residents with advanced dementia. Data were collected during piloting of the Compassion intervention that engaged an Interdisciplinary Care Leader (ICL) in two care homes and aimed to improve end of life care for residents with advanced dementia. Data included the ICL's reflective diary, time record and interviews with family carers, care home staff, GPs and other health professionals. The ICL assessed 30 residents with advanced dementia and had 37 conversations of at least 15 minutes with family members. Qualitative data were thematically analysed by two researchers. Family members described not having discussed end of life care with healthcare professionals, despite interest...
In line with the National Dementia Strategy (2009), a mixed methods programme was designed to dev... more In line with the National Dementia Strategy (2009), a mixed methods programme was designed to develop and pilot a complex intervention to improve end of life care for people with advanced dementia. A facilitation-based model provided education, training and support to health care professionals (HCPs) creating an integrated, individualised and holistic service. To inform the intervention development, we conducted a series of qualitative interviews to examine HCPs attitudes and knowledge regarding integrated care. A topic guide was used to interview 14 HCPs including commissioners, care home managers, nurses and health care assistants. We used a rigorous approach to data analysis (quality framework recommended by Spencer et al 2003). Thematic analysis identified meaningful themes. Interviews revealed how shortfalls in different sectors providing care for this vulnerable population contribute to discontinuity of care. The main themes found to contribute to care fragmentation were care ...
Objectives. Deinstitutionalization of long-term psychiatric patients produced various community-b... more Objectives. Deinstitutionalization of long-term psychiatric patients produced various community-based residential care facilities. However, inner-city areas have many patients with severe mental illness (SMI) as well as deprivation, unemployment, and crime. This makes meeting their community needs complex. We undertook a needs assessment of service provision and consonance between service users’ evaluation of need and by care workers.Design. Cross-sectional study with random sample of SMI service users in four housing settings: rehabilitation units; high-supported; medium-supported; low-supported housing.Setting. London Borough of Haringey.Outcome Measures. 110 SMI service users and 110 keyworkers were interviewed, using Camberwell Assessment of Need; SF-36; Lancashire Quality-of-Life profile; demographic and clinical information.Results. People in “low-support” and “high-support” housing had similar symptom scores, though low support had significantly lower quality of life. Quality...
Social Psychiatry and Psychiatric Epidemiology, 2004
Background Refugee and migrant children are likely to be exposed to many of the risk factors for ... more Background Refugee and migrant children are likely to be exposed to many of the risk factors for emotional and behavioural problems. These children form a significant proportion of the school population in London and other inner cities in the UK. However, there are very little epidemiological data available on their mental health. In this study, we aimed to examine the prevalence of psychological problems among refugee and migrant schoolchildren compared to their UK-born peers. Method A cross-sectional investigation using the Strengths and Difficulties Questionnaire (SDQ) examined in association with socio-demographic variables including language preference. Results Almost a quarter of schoolchildren might be described as having a need, with migrant and refugee children showing greater psychological distress on a number of the sub-scales of the SDQ. Language appears to be an important variable associated with distress.
Social Psychiatry and Psychiatric Epidemiology, 2010
Differences in outcome between African-Caribbean and white British patients with psychosis may be... more Differences in outcome between African-Caribbean and white British patients with psychosis may be due to perceived racism and a difficulty in trusting services seen as discriminatory. In 100 participants, racism was measured at baseline using the Perceived Racism Scale; with adherence, using the Drug Attitudes Inventory and Kemp Scale, and hospital admission data determined after 12 months. We found associations between total perceived racism for the previous year (b = -0.0074, P = 0.013), lifetime racism (b = -0.0068, P = 0.038), and everyday racism for the previous year (b = -0.051, P = 0.0046), with subsequent medication adherence. Shame felt about health system racism was associated with increased adherence (b = 0.20, P = 0.015), and powerlessness about it was associated with fewer subsequent hospital bed days (b = -14.49, P = 0.025). Finally, health system racism was associated with both the number of subsequent hospital bed days (b = 5.54, P = 0.010), and admission length (b = 4.92, P = 0.021). In addition, stratified analyses showed that both baseline adherence and 6-month estimated adherence appeared to mediate these effects. In this cohort of African-Caribbean patients with psychosis, perceived racism is a determinant of adherence over 12 months. We propose a model whereby perceived racism contributes to an individual rejecting mental health services (manifested by the mediating effect of poor adherence) which leads to a poorer outcome, evidenced by a longer hospital stay. Secondly, powerlessness about perceived health-service racism may represent a sense of resignation about the "system", leading paradoxically to greater adherence and better outcome.
Clinical Practice and Epidemiology in Mental Health, 2009
Aim: The increased rate of psychosis and poorer service-related outcomes in UK African-Caribbeans... more Aim: The increased rate of psychosis and poorer service-related outcomes in UK African-Caribbeans may in part be related to racism; racism as an aetiological factor remains comparatively under-investigated. We wanted to develop a measure of perceived racism in UK African-Caribbean patients with psychosis Methods: We modified the Perceived Racism Scale (PRS) by substituting a mental-health-services' racism domain for the employment-racism domain and administered it to a sample of 150 individuals. Results: 110 people completed the PRS with a total mean perceived racism score of 54.2 for the previous year and 71.3 for the lifetime. The modified instrument had good internal consistency, and both a similar factor-analytic structure and sampling adequacy to the original instrument. Clinical Implications: The modified PRS was acceptable to the sample, withstands statistical scrutiny and produced similar totals to those in previously-tested populations. Subjective measurement of perceived racism may improve understanding of psychosis in African-Caribbeans, improve engagement and, hopefully, outcome.
Background There is evidence that Irish migrants in Britain have higher rates of depression and s... more Background There is evidence that Irish migrants in Britain have higher rates of depression and suicide than other minority ethnic groups. Aims To examine the association between poorly planned migration and depression in Irish-born people living in London. Method A sample of 360 Irish-born people was recruited from 11 general practices into a case-control study Participants were interviewed using standardised measures, including the Beck Depression Inventory (BDI). We calculated the odds ratio for any association between depression and eight questions on preparation for migration. Results Poorly planned migration was associated with subsequent depression in Irish-born people living in London (OR=1.20, 95% CI 1.06-l.35). The odds of depression were increased by a factor of 20% for each additional negative answer to eight questions on preparation for migration. Positive post-migration influences such as adequate social support protected some against depression. Conclusions Depression...
British Journal of Guidance & Counselling, 2007
ABSTRACT The provision of counselling services for refugee and asylum-seeking patients is relativ... more ABSTRACT The provision of counselling services for refugee and asylum-seeking patients is relatively new in the UK and their complex needs may present considerable challenges within primary care, where access to specialist support resources is often limited. As far as ...
European eating disorders review : the journal of the Eating Disorders Association, 2015
Little is known about how patients with long-term eating disorders manage their clinical problems... more Little is known about how patients with long-term eating disorders manage their clinical problems. We carried out a preliminary qualitative study (using Thematic Analysis) of patients with severe and enduring anorexia nervosa (SEED-AN) in which we undertook recorded interviews in eight participants whose conditions had lasted 20-40 years. We found 15 principle features in physical, psychological, social, family, occupational and treatment realms. Psychological and social realms were most affected. Severe physical problems were reported. They described feelings of unworthiness, frugality regarding money and obsessive time-keeping. Persisting with negligible social networks, participants described depression and hopelessness, while somehow achieving a sense of pride at their endurance and survival in spite of the eating disorder. They emphasized the importance of professional help in managing their care. The severe and enduring description, often reserved for people with psychotic ill...
ABSTRACT The provision of counselling services for refugee and asylum-seeking patients is relativ... more ABSTRACT The provision of counselling services for refugee and asylum-seeking patients is relatively new in the UK and their complex needs may present considerable challenges within primary care, where access to specialist support resources is often limited. As far as ...
Help-seeking among young people is complicated, often determined vicariously by the ability of ad... more Help-seeking among young people is complicated, often determined vicariously by the ability of adults, family or professionals, to recognize, and respond to, their difficulties. We know very little about the complex concerns of teenage young people and how they ...
European eating disorders review : the journal of the Eating Disorders Association, 2015
Little is known about how patients with long-term eating disorders manage their clinical problems... more Little is known about how patients with long-term eating disorders manage their clinical problems. We carried out a preliminary qualitative study (using Thematic Analysis) of patients with severe and enduring anorexia nervosa (SEED-AN) in which we undertook recorded interviews in eight participants whose conditions had lasted 20-40 years. We found 15 principle features in physical, psychological, social, family, occupational and treatment realms. Psychological and social realms were most affected. Severe physical problems were reported. They described feelings of unworthiness, frugality regarding money and obsessive time-keeping. Persisting with negligible social networks, participants described depression and hopelessness, while somehow achieving a sense of pride at their endurance and survival in spite of the eating disorder. They emphasized the importance of professional help in managing their care. The severe and enduring description, often reserved for people with psychotic ill...
The prevalence of dementia is rising worldwide and many people will die with the disease. Symptom... more The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Profess...
Objectives. Deinstitutionalization of long-term psychiatric patients produced various community-b... more Objectives. Deinstitutionalization of long-term psychiatric patients produced various community-based residential care facilities. However, inner-city areas have many patients with severe mental illness (SMI) as well as deprivation, unemployment, and crime. This makes meeting their community needs complex. We undertook a needs assessment of service provision and consonance between service users' evaluation of need and by care workers. Design. Cross-sectional study with random sample of SMI service users in four housing settings: rehabilitation units; high-supported; medium-supported; low-supported housing. Setting. London Borough of Haringey. Outcome Measures. 110 SMI service users and 110 keyworkers were interviewed, using Camberwell Assessment of Need; SF-36; Lancashire Quality-of-Life profile; demographic and clinical information. Results. People in "lowsupport" and "high-support" housing had similar symptom scores, though low support had significantly lower quality of life. Quality of life was positively predicted by self-reported mental-health score and negatively predicted by unmet-need score in whole sample and in medium-support residents. Residents' and care-workers' assessments of need differed considerably. Conclusions. Although patients' housing needs were broadly met, those in low-supported housing fared least well. Attendance to self-reported mental health and unmet social needs to quality of life underpins planning of residential services for those with SMI. Social and personal needs of people in supported housing may be underestimated and overlooked; service providers need to prioritise these if concept of "recovery" is to advance.
Social Psychiatry and Psychiatric Epidemiology, 2011
Differences in outcome between African-Caribbean and white British patients with psychosis may be... more Differences in outcome between African-Caribbean and white British patients with psychosis may be due to perceived racism and a difficulty in trusting services seen as discriminatory. In 100 participants, racism was measured at baseline using the Perceived Racism Scale; with adherence, using the Drug Attitudes Inventory and Kemp Scale, and hospital admission data determined after 12 months. We found associations between total perceived racism for the previous year (b = -0.0074, P = 0.013), lifetime racism (b = -0.0068, P = 0.038), and everyday racism for the previous year (b = -0.051, P = 0.0046), with subsequent medication adherence. Shame felt about health system racism was associated with increased adherence (b = 0.20, P = 0.015), and powerlessness about it was associated with fewer subsequent hospital bed days (b = -14.49, P = 0.025). Finally, health system racism was associated with both the number of subsequent hospital bed days (b = 5.54, P = 0.010), and admission length (b = 4.92, P = 0.021). In addition, stratified analyses showed that both baseline adherence and 6-month estimated adherence appeared to mediate these effects. In this cohort of African-Caribbean patients with psychosis, perceived racism is a determinant of adherence over 12 months. We propose a model whereby perceived racism contributes to an individual rejecting mental health services (manifested by the mediating effect of poor adherence) which leads to a poorer outcome, evidenced by a longer hospital stay. Secondly, powerlessness about perceived health-service racism may represent a sense of resignation about the "system", leading paradoxically to greater adherence and better outcome.
In line with the National Dementia Strategy (2009), a mixed methods programme was designed to dev... more In line with the National Dementia Strategy (2009), a mixed methods programme was designed to develop and pilot a complex intervention to improve end of life care for people with advanced dementia. A facilitation-based model provided education, training and support to health care professionals (HCPs) creating an integrated, individualised and holistic service. To inform the intervention development, we conducted a series of qualitative interviews to examine HCPs attitudes and knowledge regarding integrated care. A topic guide was used to interview 14 HCPs including commissioners, care home managers, nurses and health care assistants. We used a rigorous approach to data analysis (quality framework recommended by Spencer et al 2003). Thematic analysis identified meaningful themes. Interviews revealed how shortfalls in different sectors providing care for this vulnerable population contribute to discontinuity of care. The main themes found to contribute to care fragmentation were care ...
Discussion about care preferences and end of life wishes between family and staff on entry to a c... more Discussion about care preferences and end of life wishes between family and staff on entry to a care home is an important predictor of family satisfaction with end of life care for residents with advanced dementia. This paper aims to examine issues relating to end of life discussions with family members of residents with advanced dementia. Data were collected during piloting of the Compassion intervention that engaged an Interdisciplinary Care Leader (ICL) in two care homes and aimed to improve end of life care for residents with advanced dementia. Data included the ICL's reflective diary, time record and interviews with family carers, care home staff, GPs and other health professionals. The ICL assessed 30 residents with advanced dementia and had 37 conversations of at least 15 minutes with family members. Qualitative data were thematically analysed by two researchers. Family members described not having discussed end of life care with healthcare professionals, despite interest...
Clinical Practice and Epidemiology in Mental Health, 2009
The increased rate of psychosis and poorer service-related outcomes in UK African-Caribbeans may ... more The increased rate of psychosis and poorer service-related outcomes in UK African-Caribbeans may in part be related to racism; racism as an aetiological factor remains comparatively under-investigated. We wanted to develop a measure of perceived racism in UK African-Caribbean patients with psychosis Methods: We modified the Perceived Racism Scale (PRS) by substituting a mental-health-services' racism domain for the employment-racism domain and administered it to a sample of 150 individuals.
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