Ethical and methodological issues in interviewing persons with dementia.

People with dementia have previously not been active participants in research, with ethical difficulties often being cited as the reason for this. A wider inclusion of people with dementia in research raises several ethical and methodological challenges. This article adds to the emerging debate by reflecting on the ethical and methodological issues raised during an interview study involving people with dementia and their spouses. The study sought to explore the impact of living with dementia. We argue that there is support for the inclusion of people with dementia in research and that the benefits of participation usually far outweigh the risks, particularly when a ;safe context' has been created. The role of gatekeepers as potentially responsible for excluding people with dementia needs further consideration, with particular reference to the appropriateness of viewing consent as a primarily cognitive, universalistic and exclusionary event as opposed to a more particularistic, inclusive and context relevant process.

Impacts on practitioners of using research-based carer assessment tools: experiences from the UK, Canada and Sweden, with insights from Australia.

Researchers and practitioners in several Western countries have recently developed tools for assessing the situation of the carers of adults who are ill, elderly or have disabilities. The present article describes the impact of three such assessment tools, from Canada, the UK and Sweden, on the professional practice of assessors. All tools were tested in agency-based studies. Focus groups, workshops and interviews with assessors were employed to understand the impact on professionals and their practice. An Australian researcher and case manager comments on these experiences from her unique perspective. The results reveal that the use of carer assessments can lead to changes in the appropriateness of intervention by informing practitioners of issues which are given little attention, but which impact on the adequacy of interventions to the service user. Across the projects, most workers found that the tools facilitated a more comprehensive, in-depth and carer-focused assessment. Experience across all the projects suggests that, used sensitively, such tools and approaches can play a key role in transforming the relationship between carers, and the health and social care system. Giving carers a legitimate voice, acknowledging their perspective and expertise, and making them central to assessment processes accords them status both as active partners, and as individuals with their own needs and aspirations, rather than seeing them primarily as resources. As a result of their experiences, many workers and administrators concluded that home-care programmes must change their mandate to include carers among their clients, raising the issue of available monetary and human resources to meet the needs of this group. In addition, as our Australian colleague points out, time, efficiency, relevance, benefit and minimal intrusiveness are important factors for practitioners which influence their use of assessment tools.

Moving into a care home: the role of adult children in the placement process.

Admission of an older person to a care home is widely recognised as a very stressful period for the family and one which, despite community care policy, is likely to be an increasingly common experience. Although there is a growing research base in this area, there have been few studies on the role of adult children in supporting their parents during this difficult transition. This paper reports on the third stage of a grounded theory study conducted in Sweden which explored the part played by adult children in the placement process. Data were collected from 13 adult children using in-depth semi-structured interviews and the results are compared with themes previously derived from interviews with 26 spouse carers. The analysis reveals important overlaps and differences and suggests the need for further research exploring the dynamics of the placement process.

Education in gerontological nursing in Brazil and Sweden: is it possible to compare?

The objective of this bibliographical study was to compare the contents of Gerontological Nursing in the pre-graduate programme in Brazil (Recife - PE and Florianópolis - SC) and Sweden (Jõnkõping and Linkõping/Norrkõping). In the results, the curricula of the courses were presented. The courses in both countries showed many similarities. It was found that in some nursing programmes have compulsory courses in gerontological/geriatric nursing while others only have elective courses in Brazil as well as in Sweden. It is our opinion that compulsory courses in Gerontological/ Geriatric are necessary to form the bases for professional nursing in societies with a high proportion of older people.

O objetivo deste estudo bibliográfico foi comparar o ensino de Enfermagem Gerontológica em programas de graduação no Brasil (Recife - PE e Florianpólis - SC) e na Suécia (Jõnkõnping e Linkõping/Norrkõping). Nos resultados os programas das disciplinas foram apresentados. Os cursos nos dois países mostraram muitas similaridades. Em ambos os países, foi encontrado, que a Enfermagem Gerontológica é disciplina às vezes obrigatória e às vezes optativa. Por ser necessária à formação do profissional de enfermagem em sociedades com alta proporção de pessoas idosas, nossa opinião é que a disciplina Enfermagem Gerontológica seja obrigatória...

El objetivo de este estudio bibliográfico fue comparar la enseñanza de enfermeria gerontológica en programas de graduación en Brasil (Recife - PE y Florianopólis - SC) y en Suécia (Jõnkõnping y Linkõping/Norrkõping). Los resultados de los programas de las disiplinas fueron presentados. Los cursos en los dos paises mostraron muchas similitudes. Fue encontrado, en los dos paises, que la Enfermeria Gerontológica es una disiplina a veces obligatoria y a veces optativa. Es nuestra opinion que la disiplina Enfermeria Gerontológica sea obligatoria, pues ella es necesaria para formar el profesional de enfermeria en sociedades con una alta proporción de personas ancianas...

The impact on professional carers of structured interviews with family carers

This paper describes a Swedish study exploring the impact of a structured assessment process on both family and professional carers. Twenty professional carers conducted in-depth assessments with 245 family carers and were later interviewed about their experiences. The interviews indicated that the assessment process had provided valuable new insights and had challenged many existing preconceptions. It also afforded carers the opportunity to explore difficult emotional issues suggesting the need to develop services to help carers deal with their feelings...

Este artigo descreve um estudo sueco que explora o impacto de um processo estruturado de avaliação com cuidadores familiares e cuidadores profissionais. Vinte cuidadores profissionais conduziram avaliações em profundidade com 245 cuidadores familiares e foram mais tarde entrevistados sobre suas experiências. As entrevistas indicaram que o processo de avaliação forneceria valiosas novas compreensões, que havia desafiado muitas das pré-concepções existentes. Também deu aos cuidadores a oportunidade de explorar questões emocionais difíceis, sugerindo a necessidade de desenvolver serviços para ajudá-los a lidar com seus sentimentos...

Este artículo describe un estudio Sueco que explora el impacto de un proceso estructurado de evaluación con cuidadores familiares y profesionales. Veinte cuidadores profesionales conducieron evaluaciones en profundidad con 245 cuidadores familiares y fueron más tarde entrevistados sobre sus experiencias. Las entrevistas indicaron que el proceso de evaluación habia suministrado valiosas y nuevas comprenciones, que habia desafiado muchas de las pré-concepciones existentes. Tambíen dio a los cuidadores la oportunidad de explorar cuestiones emocionales difíciles, sugiriendo la necesidad de desarrollar servicios para ayudados a los cuidadores a lidiar con sus sentimientos...