Satisfaction with primary care:the perspectives of people with schizophrenia

Background. Schizophrenia affects up to 1% of the population in the UK. People with schizophrenia use the National Health Service frequently and over a long period of time. However, their views on satisfaction with primary care are rarely sought. Objectives. This study aimed to explore the elements of satisfaction with primary care for people with schizophrenia. Method. A primary care-based study was carried out using semi-structured interviews with 45 patients with schizophrenia receiving shared care with the Northern Birmingham Mental Health Trust between 1999 and 2000. Results. Five major themes that affect satisfaction emerged from the data: the exceptional potential of the consultation itself; the importance of aspects of the organization of primary care; the construction of the user in the doctor-patient relationship; the influence of stereotypes on GP behaviour; and the importance of hope for recovery. Conclusion. Satisfaction with primary care is multiply mediated. It is also rarely expected or achieved by this group of patients. There is a significant gap between the rhetoric and the reality of user involvement in primary care consultations. Acknowledging the tensions between societal and GP views of schizophrenia as an incurable life sentence and the importance to patients of hope for recovery is likely to lead to greater satisfaction with primary health care for people with schizophrenia.

A monster that lives in our lives - experiences of caregivers of people with motor neuron disease and identifying avenues for support.

Background A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited.

Aim This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.

Design A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken.

Setting/participants Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia.

Results 15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining.

Conclusions Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation.

The Lived Experience of People with Mental Health and Substance Misuse Problems: Dimensions of Belonging

Introduction: People with co-occurring mental health and substance misuse problems are among the most excluded in society. A need to feel connected to others has been articulated in the occupational science literature although the concept of belonging itself has not been extensively explored within this paradigm. This paper reports findings from research that explored the meaning and experience of belonging for four people living with dual diagnosis in the United Kingdom. Method: Researchers employed an interpretative phenomenological approach to the study. Four semi-structured interviews were carried out. The interviews were guided by questions around the meaning of belonging, barriers to belonging and how belonging and not belonging impacted on participants’ lives. Data analysis facilitated the identification of themes across individual accounts and enabled comparisons. Findings: Data analysis identified four themes – belonging in family, belonging in place, embodied understandings of belonging and barriers to belonging. Conclusion: The findings add further insights into the mutable nature of belonging. A link between sense of belonging and attachment theory has been proposed, along with a way to understand the changeable and dependent nature of belonging through ‘dimensions of belonging’.

Development of the Andalusian Registry of Patients Receiving Community Case Management, for the follow-up of people with complex chronic diseases.

Background: Complex chronic diseases are a challenge for the current configuration of Health services. Case management is a service frequently provided for people with chronic conditions and despite its effectiveness in many outcomes, such as mortality or readmissions, uncertainty remains about the most effective form of team organization, structures, and the nature of the interventions. Many processes and outcomes of case management for people with complex chronic conditions cannot be addressed with the information provided by electronic clinical records. Registries are frequently used to deal with this weakness. The aim of this study was to generate a registry-based information system of patients receiving case management to identify their clinical characteristics, their context of care, events identified during their follow-up, interventions developed by case managers, and services used. Methods and design: The study was divided into three phases, covering the detection of information needs, the design and its implementation in the healthcare system, using literature review and expert consensus methods to select variables that would be included in the registry. Objective: To describe the essential characteristics of the provision of ca re lo people who receive case management (structure, process and outcomes), with special emphasis on those with complex chronic diseases. Study population: Patients from any District of Primary Care, who initiate the utilization of case management services, to avoid information bias that may occur when including subjects who have already been received the service, and whose outcomes and characteristics could not be properly collected. Results: A total of 102 variables representing structure, processes and outcomes of case management were selected for their inclusion in the registry after the consensus phase. Total sample was composed of 427 patients, of which 211 (49.4%) were women and 216 (50.6%) were men. The average functional level (Barthel lndex) was 36.18 (SD 29.02), cognitive function (Pfeiffer) showed an average of 4.37 {SD 6.57), Chat1son Comorbidity lndex, obtained a mean of 3.03 (SD 2.7) and Social Support (Duke lndex) was 34.2 % (SD 17.57). More than half of patients include in the Registry, correspond lo immobilized or transitional care for patients discharged from hospital (66.5 %). The patient's educational level was low or very low (50.4%). Caregivers overstrain (Caregiver stress index), obtained an average value of 6.09% (SD 3.53). Only 1.2 % of patients had declared their advanced directives, 58.6 had not defined the tutelage and the vast majority lived at home 98.8 %. Regarding the major events recorded at RANGE Registry, 25.8 % of the selected patients died in the first three months, 8.2 % suffered a hospital admission at least once time, 2.3%, two times, and 1.2% three times, 7.5% suffered a fall, 8.7% had pressure ulcer, 4.7% had problems with medication, and 3.3 % were institutionalized. Stroke is the more prevalent health problem recorded (25.1%), followed by hypertension (11.1%) and COPD (11.1%). Patients registered by NCMs had as main processes diabetes (16.8%) and dementia (11.3 %). The most frequent nursing diagnoses referred to the self-care deficit in various activities of daily living. Regarding to nursing interventions, described by the Nursing Intervention Classification (NIC), dementia management is the most used intervention, followed by mutual goal setting, caregiver and emotional support. Conclusions: The patient profile who receive case management services is a chronic complex patient with severe dependence, cognitive impairment, normal social support, low educational level, health problems such as stroke, hypertension or COPD, diabetes or dementia, and has an informal caregiver. At the first follow up, mortality was 19.2%, and a discrete rate of readmissions and falls.

Transitioning from caregiver to visitor in a long-term care facility: the experience of caregivers of people with dementia

Objectives: Transitioning from the primary caregiver to the visitor in a long-term care facility may be challenging for the caregiver; they are required to surrender their caring duties to the medical and nursing staff. The aim of this study was to explore the experiences of caregivers during their transition from day-to-day caregiver of a person with dementia to a visitor in a long-term care facility.

Methods: This study utilised a qualitative descriptive design. Twenty caregivers of people with dementia were recruited from the one Aged Rehabilitation and Geriatric Evaluation and Management facility, located in Victoria, Australia. Semi-structured interviews were used to explore the caregiver's experiences. Interviews were analysed using thematic analysis.

Results: The interview data revealed that the participants were undergoing similar experiences. The findings revealed that it was difficult for the caregiver to transition to their new role of visitor; negative reactions of grief, loss of motivation and loneliness were also coupled with positive feelings of relief and the reassurance that their relative or friend would be well cared for and safe within the long-term care facility.

Conclusion: The findings offer insight into the experiences felt by caregivers when their relative or friend with dementia is admitted to hospital. Implications of this study include the need to improve the transition process for the caregiver by allowing them to be involved in the decision-making process, keeping them informed of care decisions, and importantly, providing emotional support to help the caregiver positively adapt to this transition.

The experience of family carers of people with dementia who are hospitalised

Hospital admission of a person with dementia can have a significant impact on the family carer, who temporarily relinquishes caring to health professionals. A descriptive qualitative design using in-depth interviews with a conversational approach was used to elicit data. Adjusting to the change in the carer’s role can be challenging and result in feelings of helplessness, loneliness, loss of control and being undervalued. Family support can assist with the transition but family conflict increases anxiety. Good communication between clinicians and the carer is vital. The carer should be included in decision-making as the ‘expert' in the care of the person with dementia. This article discusses findings of a larger study specifically related to the emotional support required for the carers of people with dementia, who are admitted to hospital. The carer and the patient must be considered as a dyad in relation to discharge planning.

Addressing the physical health of people with serious mental illness : a potential solution for an enduring problem

People with serious mental illness face significant inequalities in physical health care. As a result, the risk of cardiometabolic disorders and premature mortality is far greater than that observed in the general population. Contributiung to this disparity, is the lack of routine physical health screening by mental health clinicians. One possible solution is the implimentation of a physical health nurse consultant, whose role is to monitor and coordinate the physical health care of people with serious mental illness. Current evidence supports the implimentation of such a role, and a failure to address the widening gaps in physical health care will only serve to increase the disparities faced by people with serious mental illness.

Subjective Aspects of People with Chronic Ulcers: a Qualitative Study in Brazil and Portugal

Introduction: The experience built in the process of living with chronic ulcer is marked by changes such as the inability to work, to relate socially and causes the need to adapt to a routine care. Understanding this network of meanings is important to develop techniques of individual or collective care. Objective: To understand impregnated subjectivities in the everyday experiences of Brazilian and Portuguese patients with chronic ulcers, in the light of the Oral History of life. Method: Comparative study with a qualitative approach, using Oral History as method and technique. The network of collaborators, formed by males and females, aged 39-82 years, was structured into two groups, one consisting of 06 people in Natal/RN, Brazil and another composed of 10 people in Évora/Portugal. In both groups, the narratives were collected through open questions, which were recorded, transcribed and analyzed by the technique of thematic content analysis. Results: Through the analysis, three themes were revealed: Social repercussion in Brazil and in Portugal; Trajectory of theinjured person; and Coping mechanisms. Conclusion: Changes were observed in social life, leading contributors to isolation, in addition to confronting the stigma experienced. There were also identified points as the reinterpretation of chronic wound carrier about their disease and coping strategies of their chroniccondition.

Análise da participação social na gestão de políticas públicas para a empregabilidade de pessoas com deficiência

A presente pesquisa tem como objetivo analisar criticamente o processo de participação social na gestão das ações das políticas públicas de empregabilidade de pessoas com deficiência, as PcD, em um município da região serrana do estado do Rio de Janeiro. Dentre estas políticas, cabe destaque para a Lei no 8.213/91 (BRASIL, 1991), conhecida como Lei de Reserva de Cotas, que estabelece fração percentual mínima de contratação de pessoas com deficiência para empresas com mais de cem empregados, assim como a Lei 7.853 (BRASIL, 1989), que estabelece normas gerais dos direitos das pessoas com deficiência e, em especial, as normas relativas à acessibilidade. Estas leis se constituem em políticas públicas no processo de inclusão da diversidade no ambiente de trabalho e servirão como parâmetro avaliativo da análise proposta pela pesquisa. Para condução metodológica desta pesquisa, realizou-se análise de relatos verbais de conselheiros quanto à inserção do Conselho Municipal das PcD na gestão de políticas públicas voltadas a este segmento. A justificativa para o desenvolvimento deste projeto consiste no fato da participação social se constituir em um princípio organizativo da gestão pública somado ao reconhecimento da temática pessoas com deficiência e trabalho como tópico polêmico e relevante para discussão e verificação. Os resultados da análise das ações do citado Conselho na gestão das políticas públicas de empregabilidade para as PcD apontaram defasagem do processo de inserção destas pessoas nos ambientes de trabalho, a ineficácia/inexistência das ações de políticas públicas específicas a esta área e a participação social incipiente de PcD na gestão das políticas públicas que garantem seus direitos ao trabalho, no município investigado. Espera-se que estas constatações contribuam para a adoção de concepções e práticas de participação social mais críticas e potentes na promoção de empregabilidade da PcD.

Qualidade da informação nos portais eletrônicos governamentais brasileiros: análise da comunicação pública sobre os direitos da pessoa com deficiência

Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES)

Computer access in higher education for students with disabilities : a practical guide to the selection and use of adapted computer technology /

Mode of access: Internet.

Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities

Background and objectives
Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.

Methods
A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed.

Results
Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: ‘information and preparation’, ‘provision of care’ and ‘family-centred care’.

Conclusions
This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.