Establishing research in a palliative care clinical setting : perceived barriers and implemented strategies

There are many challenges in developing research projects in research-naïve clinical settings, especially palliative care where resistance to participate in research has been identified. These challenges to the implementation of research are common in nursing practice and are associated with attitudes towards research participation, and some lack of understanding of research as a process to improve clinical practice. This is despite the professional nursing requirement to conduct research into issues that influence palliative care practice. The purpose of this paper is to describe the process of implementing a clinical research project in collaboration with the clinicians of a palliative care community team and to reflect on the strategies implemented to overcome the challenges involved. The challenges presented here demonstrate the importance of proactively implementing engagement strategies from the inception of a research project in a clinical setting.

Nutritional challenges for the family caregiver and person with dementia dyad

ABSTRACT Background: The majority of people with dementia live at home until quite late in the disease trajectory, supported by family caregivers who typically take increasing responsibility for providing nutrition. Caregiving is highly stressful and thus both dyad partners are at risk of nutritional issues. Objective: This study evaluated the nutritional status of both dyad members and the associations between these. Design Descriptive, correlational Setting Community Participants 26 dyads of persons with dementia and caregivers Measurements: The nutritional status of each dyad member was evaluated at home using a comprehensive battery of measures including the Mini-Nutritional Assessment, Corrected Arm Muscle Area and a 3-day food diary. Stage of dementia and functional eating capacity was measured for the person with dementia. Caregivers completed a brief burden scale. Results: Of those with dementia (n = 26), a large proportion had nutritional issues (one was malnourished and another 16 were at risk). Six of the caregivers were at risk of malnutrition. In addition, fifteen of the people with dementia did not meet their recommended daily energy requirements. A moderate and significant positive correlation between functional eating skills and nutritional status (MNA score) among participants with dementia was found (r =.523, n = 26, p.006). Conclusion: These findings suggest that a dyadic perspective of nutritional status provides important insights into risk in this vulnerable group. Specifically, monitoring of the functional eating independence skills of the person with dementia is critical, along with assisting caregivers to be aware of their own eating patterns and intake.

“I understand. I am a participant”: Navigating the ‘fuzzy’ boundaries of visual methods in qualitative longitudinal research

In this chapter we discuss how utilising the participatory visual methodology, photovoice, in an aged care context with its unique communal setting raised several ‘fuzzy boundary’ ethical dilemmas. To illustrate these challenges, we draw on immersive field notes from an ongoing qualitative longitudinal research (QLR) exploring the lived experience of aged care from the perspective of older residents, and focus on interactions with one participant, 81 year old Cassie. We explore how the camera, which is integral to the photovoice method, altered the researcher/participant ethical dynamics by becoming a continual ‘connector’ to the researcher. The camera took on a distinct agency, acting as a non-threatening ‘portal’ that lengthened contact, provided informal opportunities to alter the relationship dynamics and enabled unplanned participant revelation.

Watching ourselves watching: Ethical issues in ethnographic action research

In this paper we explore some of the ethical issues associated with conducting Ethnographic Action Research (Tacchi, 2004; Tacchi et al., 2003) for understanding and facilitating distributed collaboration. Ethnography and action research are increasingly popular qualitative approaches to researching computer-supported collaboration and we are applying them together in a project within a distributed research centre. We identify ethical principles applied to the conduct of research in Australia and we briefly describe a number of ethical problems that arise due to the nature of Ethnographic Action Research.

'Getting started, getting feedback, and getting finished'- practice research in action

This article outlines the purpose, definition and usefulness of social work practice research and then describes a training program conducted by a group of social workers in the Australian Association of Social Workers (Victorian Branch) Practice Research Special Interest Group. These workshops offered practitioners the opportunity to explore a research idea with a group of colleagues which acted as a reference group over a period of six months. Two models of practice research workshops are described and their outcomes presented.

Política de atenção ao indivíduo em sofrimento mental em um município do oeste do Paraná

A assistência psiquiátrica a indivíduos com sofrimento psíquico, em seu campo político, passou por um longo processo de discussão e formulação de estratégias a fim de garantir condição de humanidade aos indivíduos assistidos. A Reforma Psiquiátrica brasileira, como ficou conhecida, ocorreu concomitante ao processo de Reforma Sanitária e formulou leis para a garantia da integralidade e do acesso universal à saúde em território nacional sob a responsabilidade das esferas governamentais. No município de Cascavel PR, o processo de formulação das políticas assistenciais para o indivíduo com transtorno mental se inicia na década de 90, porém só é efetivamente estruturado a partir de 2003 com o fechamento do Hospital Psiquiátrico São Marcos, que forçou o município a agilizar o processo de implantação da rede assistencial e de serviços complementares com moldes psicossociais. Com isso o município estrutura a assistência ao portador de transtorno mental através da implantação de ambulatório especializado, serviço de urgência e centros de atenção psicossocial para adultos, crianças e usuários de álcool e outras drogas, todos estruturados com suporte assistencial realizado pela Unidade Básica de Saúde (UBS). Em cada UBS foi nomeado um profissional de referência para o acompanhamento desses usuários e de seus familiares com o intuito de fortalecer o vínculo e manter a relação entre os serviços complementares e atenção primária. O presente estudo é centrado na pesquisa bibliográfica e de campo, com caráter qualitativo, cujo ponto de partida é a coleta de dados por meio de aplicação de questionário semi-estruturado com a finalidade de conhecer o processo de formulação das políticas municipais de atenção ao doente mental através do questionamento sobre as práticas assistenciais desenvolvidas pela atenção primária à saúde. A população é composta por 10 (dez) profissionais das UBS, referências em saúde mental, e 10 (dez) familiares de usuários com sofrimento mental, assistidos pela atenção básica, mas inseridos em algum dos serviços ofertados da rede assistencial de saúde mental. A análise dos dados se deu por meio de análise de conteúdo, com estruturação de dois grandes focos de análise para melhor compreensão dos conteúdos (Análise de Conteúdo de Bardin). O resultado apontou dados positivos em relação à política de saúde mental municipal uma vez que, embora com apontamentos divergentes entre profissionais e usuários, percebe-se a intenção em assegurar aos indivíduos em sofrimento psíquico uma gama de procedimentos que são, inclusive, orientados por portarias ministeriais. Em relação à assistência prestada pela atenção básica de saúde, há convergência em relação às ações desenvolvidas pelos profissionais da UBS, embora os profissionais afirmem o desenvolvimento de atividades que não são confirmadas pelos usuários. Em relação às dificuldades encontradas para efetivação do tratamento, tanto profissionais quanto usuários apontam que há muito a avançar no campo da saúde mental para que efetivamente seja prestada assistência de forma equânime e integral.

Qualitative evaluation of KA24 (Knowledge Access 24)

Durbin, J. & Urquhart, C. (2003). Qualitative evaluation of KA24 (Knowledge Access 24). Aberystwyth: Department of Information Studies, University of Wales Aberystwyth. Sponsorship: Knowledge Access 24 (NHS)

Exploring strategies for promoting the use of research findings in practice

Following the integration of nurse and midwifery education into institutions of higher education in the United Kingdom, a number of studies have shown that a defined clinical framework for nursing and midwifery lecturers in practice areas is lacking. The aim of this study was to explore strategies that nurse and midwifery lecturers from one higher education institution in south east England can use to work collaboratively with nurses and midwives to promote the utilization of research findings in practice. A cross-sectional survey using a structured questionnaire was sent to a sample of 60 nurse and midwifery lecturers and 90 clinical managers. Response rates of 67% (40) and 69% (62) respectively were obtained. The main strategies suggested were to make clinical staff more aware of what research exist in their specialties; to help them to access research information from research databases; and to critically appraise this information. Other strategies were for teachers to run research workshops on site; to undertake joint research projects with clinical staff; to set up journal clubs or research interest groups; and to help formulate clinical guidelines and protocols which are explicitly research-based.

Exploring strategies for promoting the use of research findings in practice

Following the integration of nurse and midwifery education into institutions of higher education in the United Kingdom, a number of studies have shown that a defined clinical framework for nursing and midwifery lecturers in practice areas is lacking. The aim of this study was to explore strategies that nurse and midwifery lecturers from one higher education institution in south east England can use to work collaboratively with nurses and midwives to promote the utilization of research findings in practice. A cross-sectional survey using a structured questionnaire was sent to a sample of 60 nurse and midwifery lecturers and 90 clinical managers. Response rates of 67% (40) and 69% (62) respectively were obtained. The main strategies suggested were to make clinical staff more aware of what research exist in their specialties; to help them to access research information from research databases; and to critically appraise this information. Other strategies were for teachers to run research workshops on site; to undertake joint research projects with clinical staff; to set up journal clubs or research interest groups; and to help formulate clinical guidelines and protocols which are explicitly research-based.

Working with the 'System' and 'Lifeworld': Using Action Research to Enhance Resilience and Attachment in a Children's Home

Residential child care workers in the UK are caught betwen competing imperatives on a grand scale. On the one hand, they are required to implement an increasing raft of policy. On the other, they must proactively engage with the young people under their care.

The experience of research participation for family caregivers of palliative care cancer patients

There have been concerns raised regarding the ethical merit of involving dying patients and family caregivers as research participants. This study sought feedback from 103 primary family caregivers who had participated in a longitudinal research project. Caregivers were sent a questionnaire regarding the benefits and negative aspects associated with participating in research while also supporting or having supported a relative dying of cancer. The study identified that almost three quarters (71.1%) of the 45 respondents reported benefits of being involved in research and the majority (88.9%) cited no negative aspects associated with research participation. Findings of the study suggest that it is pertinent to invite family caregivers to be involved in palliative care research. Moreover, this study demonstrated that not only is it probably safe for family caregivers to be involved in research but also that many participants actually derive benefits.

The impact of an educational DVD on pregnant women with gestational diabetes mellitus: a randomised controlled trial

Background The diagnosis of gestational diabetes (GDM) during pregnancy can lead to anxiety. Little research has focused on the education these women receive and how this is best delivered in a busy clinic. Aim This study evaluated the impact of an innovative patient-centred educational DVD on anxiety and glycaemic control and in newly diagnosed women with GDM. Method 150 multi-ethnic women, aged 19-44 years, from three UK hospitals were randomised to either standard care plus DVD (DVD group, n=77) or standard care alone (control group, n=73) at GDM diagnosis. Women were followed up at their next clinic visit at a mean ± SD of 2.5 ± 1.6 weeks later. Primary outcomes were anxiety (State-Trait Anxiety Inventory) and mean 1-hour postprandial capillary self-monitored blood glucose for all meals, on day prior to follow-up. Secondary outcomes included pregnancy specific stress (Pregnancy Distress Questionnaire), emotional adjustment to diabetes (Appraisal of Diabetes Scale), self-efficacy (Diabetes Empowerment Scale) and GDM knowledge (non-validated questionnaire). Other outcomes included mean fasting and 1-hour postprandial blood glucose at each meal, on day prior to follow-up. Women in the DVD group completed a feedback questionnaire on the resource. Results No significant difference between the DVD and control group were reported, for anxiety (37.7 ± 11.7 vs 36.2 ± 10.9; mean difference after adjustment for covariates (95%CI) 2.5 (-0.8, 5.9) or for mean 1-hour postprandial glucose (6.9 ± 0.9 vs 7.0 ± 1.2 mmol/L; -0.2 (-0.5, 0.2). Similarly, no significant differences in the other psychosocial variables were identified between the groups. However, the DVD group had significantly lower postprandial breakfast glucose compared to the control group (6.8 ± 1.2 vs 7.4 ± 1.9 mmol/L; -0.5 (-1.1, -<0.1; p=0.04). Using a scale of 0-10, 84% rated the DVD 7 or above for usefulness (10 being very useful), and 88% rated it 7 or above when asked if they would recommend to a friend (10 being very strongly recommend). Women described the DVD as ‘reassuring’, ‘a fantastic tool’, that ‘provided a lot of information in a quick and easy way’ and ‘helped reinforce all the information from clinic’. Discussion While no significant change was observed in anxiety or mean postprandial glucose, the DVD was rated highly by women with GDM and may be a useful resource to assist with educating newly diagnosed women. This project is supported by BRIDGES, an IDF programme supported by an educational grant from Lilly Diabetes.

Exploring Access to Direct Payments by People with Dementia Living in Rural Communities

Direct payments are cash payments made to individuals eligible for social care services which allow them to manage their own social care. Research suggests that direct payments can enable people with dementia to stay in their own home for longer and experience greater choice, flexibility and an improved social life. However uptake of direct payments is currently low. There is a lack of research to date in this area which addresses the factors of dementia, ageing and rurality in unison. Therefore the objective of this research was to explore the experiences of people with dementia living in rural communities, in relation to their access to direct payments. 26 semi-structured interviews were conducted with people with dementia in receipt of social care services in the community, and their carers and social workers. Focus groups were carried out with two community social work teams, and existing online discussions regarding direct payments were examined. It was found that direct payments tended to be seen as a fall back option, for example as the only alternative to residential care, or as a potential solution to problems experienced by existing social care service users. Direct payments appeared to afford particular benefits to people with dementia and to those living in rural communities in terms of flexibility, continuity of care and access to local facilities. It is therefore important that this group are enabled to access direct payments; ensuring direct payments are viewed as a positive option by all stakeholders is key to this.