Rebekah Pratt

Making sure services deliver for people with advanced heart failure: a longitudinal qualitative study of patients, family carers, and health professionals

The objective of this study was to evaluate the key components of services for people with advanced heart failure from multiple perspectives and recommend how care might be delivered in line with UK policies on long-term conditions, palliative and end-of-life care. Serial interviews were conducted over 2 years with patients, case-linked family carers and professionals (n =162); followed by four focus groups involving patients, carers and key professionals (n =32). There were 36 patients with advanced heart failure, 30 family carers and 62 professionals included in the study from a UK health region with various heart failure care models. Participants confirmed the value of a key health professional coordinating care, holistic assessment and regular monitoring. A lack of time and resources due to competing priorities in primary care, failure to respond to the fluctuations of a heart failure illness trajectory, concerns about the balance between direct care from specialist nurses or a more advisory role and difficulty in judging when to move towards palliative care hindered consistent access to proactive care. A heart failure care framework, with key stages and service responses, was developed. We conclude that patients with long-term conditions needing palliative care should be identified and managed using pragmatic criteria that include a proactive shift in care goals.

Awareness in dementia: Ethical and legal issues in relation to people with dementia

Our improved understanding of the experience of people with dementia provides a new impetus to address legal and ethical issues. This paper explores emerging issues in relation to awareness in dementia and its impact on legal and ethical matters. The different approaches and principles demonstrated in relation to ethical issues are discussed, with an exploration of the concepts of beneficence, non-maleficence, autonomy, and paternalism. Application of these concepts is discussed in relation to advance directives, capacity, and decision making, participation in research and treatment, including informed consent, and truth telling. The tensions that exist between the imperatives of doing no harm and of maintaining autonomy in addressing legal and ethical issues are highlighted, and attention drawn to the manner in which the attribution of unawareness is used to justify withholding autonomy. The review emphasizes the importance of considering competency and awareness as being multi-faceted, to be understood in the context of social interaction.

Perceptions of change over time in early-stage Alzheimer's disease Implications for understanding awareness and coping style

Emerging models of subjective experience, awareness and coping in early-stage dementia may usefully be enhanced by incorporating a temporal perspective. As an initial step in this direction, we undertook a prospective one-year follow-up of participants with a diagnosis of early-stage Alzheimers disease whose accounts had contributed to the development of Clares phenomenological model of awareness incorporating the continuum model of coping in early-stage dementia. All 12 participants from the original study completed a follow-up interview one year later. Interpretative phenomenological analysis was used to identify emergent themes. All participants continued to demonstrate some awareness of difficulties with memory, but individuals varied in their evaluations of the extent and implications of these changes, with the majority tending towards more normalizing explanations. Many were nevertheless making practical adjustments to their activities, and the need to renegotiate relationships was a prominent issue. Subsequently, the data were examined for evidence of the themes identified in the original study, the initial model was reapplied, and changes in individual coping style over time were explored through case study analysis. The range of processes and coping styles observed across participants 12 months earlier was still apparent, with some indication of increased polarization between self-maintaining and self-adjusting styles of coping. A small number of participants showed significant changes in coping style, with changes occurring in both directions. The findings suggest that expression of awareness interacts with coping style, illustrating the need to consider both factors in combination in order to better understand individual expressions of awareness of change.

The ‘Talking About Memory Coffee Group’: A new model of support for people with early-stage dementia and their families

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‘It's like a revolving door syndrome’: Professional perspectives on models of access to services for people with early-stage dementia

As the need for services for people with dementia grows, and the benefits of early intervention become clear, it has become important to understand what factors may improve access to services for people with early-stage dementia. There are a number of models of service access, and these emphasise different areas, whether individual factors, relationships, or social context. The relevance of these models to variations in service access for people with early-stage dementia, and how well they relate to professional accounts, is not well known. In this study, 30 key professionals were interviewed about access to services for people with early-stage dementia in order to explore how different models of access were reflected in their own understandings. People with early-stage dementia were thought to have a range of complex needs, but participants felt these needs remained largely unmet. When articulating the reasons why they thought needs were unmet, participants focused on the impact of the framework within which services are delivered. The findings highlight the importance of considering relationships and socio-contextual factors, such as the impact of the framework of service delivery, when attempting to understand variations in access to services. In order to improve access to services, it will be necessary to move beyond addressing individual factors relating to access, and to consider the impact of the framework for service delivery and the relationships that influence contact with services.

A qualitative study of primary care professionals' views of case finding for depression in patients with diabetes or coronary heart disease in the UK

BackgroundRoutinely conducting case finding (also commonly referred to as screening) in patients with chronic illness for depression in primary care appears to have little impact. We explored the views and experiences of primary care nurses, doctors and managers to understand how the implementation of case finding/screening might impact on its effectiveness.MethodsTwo complementary qualitative focus group studies of primary care professionals including nurses, doctors and managers, in five primary care practices and five Community Health Partnerships, were conducted in Scotland.ResultsWe identified several features of the way case finding/screening was implemented that may lead to systematic under-detection of depression. These included obstacles to incorporating case finding/screening into a clinical review consultation; a perception of replacing individualised care with mechanistic assessment, and a disconnection for nurses between management of physical and mental health. Far from being a standardised process that encouraged detection of depression, participants described case finding/screening as being conducted in a way which biased it towards negative responses, and for nurses, it was an uncomfortable task for which they lacked the necessary skills to provide immediate support to patients at the time of diagnosis.ConclusionThe introduction of case finding/screening for depression into routine chronic illness management is not straightforward. Routinized case finding/screening for depression can be implemented in ways that may be counterproductive to engagement (particularly by nurses), with the mental health needs of patients living with long term conditions. If case finding/screening or engagement with mental health problems is to be promoted, primary care nurses require more training to increase their confidence in raising and dealing with mental health issues and GPs and nurses need to work collectively to develop the relational work required to promote cognitive participation in case finding/screening.

Culturally informed views on cancer screening: a qualitative research study of the differences between older and younger Somali immigrant women

BackgroundSomali women are infrequently screened for breast or cervical cancer, and there is a paucity of evidence-based interventions to increase cancer screening in this community. In order to create a culturally relevant intervention for Somali women living in Minnesota, we sought to understand what Somali immigrant women know about breast and cervical cancer, what are the attitudes toward screening and what cultural barriers are there to screen as well as cultural factors that would facilitate screening.MethodsIn partnership with a community-based organization, New American Community Services (NACS), focus groups were conducted to explore the issues described above. Two focus groups were held with younger women age 20 to 35 and two were held with women age 36 to 65.ResultsTwenty-nine women participated in the four focus groups. The women identified 1) differences in health care seeking behavior in Somalia verses the United States; 2) cultural understanding of cancer and disease; 3) barriers to mammogram or Pap screening; 4) facilitators to seeking preventive cancer screening; and 5) risk factors for developing cancer.ConclusionsCultural misperceptions and attitudes need to be addressed in developing culturally-appropriate interventions to improve screening uptake for Somali women. A nuanced response is required to address barriers specific to younger and older groups. Culturally informed beliefs can be integrated into intervention development, preventive care and screening promotion.

Management of professional boundaries in rural practice

Purpose Rural physicians wrestle with professional boundary issues routinely in everyday interactions, and their situation differs from the experience of their urban colleagues. Medical students receive limited exposure to professional boundary management in preclinical training. Increasingly, schools are implementing rural longitudinal clinical clerkships which expose students to rural boundary setting. This qualitative study explored the management of professional boundaries integral to rural practice and how this management may differ from their urban colleagues. Method Semistructured interviews were conducted in 2010 with 12 rural physicians across Minnesota exploring their perceptions of professionalism in rural practice. A social constructivist approach to grounded theory was used to analyze the data. Results Five primary themes regarding rural professionalism emerged from the data: centrality of care, rural influences on choice, individualization of boundary setting, advantages of dual relationships, and disadvantages of them. These themes served to illustrate rural boundary management. Conclusions This study’s findings indicate that rural physicians are routinely confronted with professional boundary issues in everyday situations, and these circumstances do not always reflect those of their urban colleagues. Given the increase in longitudinal immersion clinical clerkship programs to nurture student interest in future rural practice, acknowledgment and acceptance of the nuances of dual relationships and boundary setting in different clinical learning contexts are vital to help students identify their personal needs for privacy and be better prepared to negotiate the realities of rural practice. These findings may inform future medical education initiatives on professional boundary setting as an aspect of professionalism.

Professional and service-user perceptions of self-help in primary care mental health services

Self-help is becoming an increasingly accessible option for addressing mental health problems. Despite this, self-help is subject to a variety of interpretations, little is known about how professionals and service-users conceptualise self-help, or how service-users engage in self-help activities. This study aimed to explore the views of self-help by service-users and health professionals in one area of Scotland, including the perceptions of what constitutes self-help and how it might be used to address mental health problems in primary care. The research involved semistructured interviews with 31 primary care mental health professionals, and in-depth interviews with 34 service-users. We found that professionals and service-users describe self-help in different ways, which has great implications for referral to and implementation of self-help in primary care settings. It also emerged that self-help was not necessarily perceived to be able to address the causes of mental distress, which could leave some professionals defaulting to offering no interventions despite the fairly positive attitude service-users show to self-help strategies. Finally, professionals need to be convinced that interventions are useful, effective and accessible as there are significant barriers in professionals using self-help; if they are not convinced, such approaches will support their therapeutic approach. The research supports the need to develop methods of delivery that offer self-help as part of a broad package of care that also considers social causes of distress.

The emancipation of visually impaired people in social science research practice

In 1999 we began research, funded by the ‘Thomas Pocklington Trust’, to explore the opinions of visually impaired people on visual impairment research. We found people wanted greater inclusion of visually impaired people in such research and participatory, empowering and emancipatory research was a priority for them. We also found, through reviewing the academic literature, that there was a dearth of such work in the field. In this article we revisit the topic to review research that has or has not been conducted since our first study to see if there has been a change in the use of emancipatory methods in the field. We have contextualized our review in a discussion on the field of disability studies and the international social policy context of disability issues. We found a growth of interest and activity in participatory, emancipatory and empowering research in the field of disability research more generally. There was also some indication that the social model of disability has had an impact on national and international social policy. However, our review found that there continues to be a dearth of emancipatory research in relation to visual impairment. The one study we did locate highlighted how participatory methods are not, in our view, necessarily consistent with the epistemological underpinnings of emancipatory methods. We believe the call from within disability studies for the greater use of emancipatory research methods has not been sufficiently realized in the field of visual impairment and more needs to be done to ground politically informed epistemological understandings in visual impairment research if more progress is to be made.