Peter Kevern

Web-Based STAR E-Learning Course Increases Empathy and Understanding in Dementia Caregivers: Results from a Randomized Controlled Trial in the Netherlands and the United Kingdom

Background The doubling of the number of people with dementia in the coming decades coupled with the rapid decline in the working population in our graying society is expected to result in a large decrease in the number of professionals available to provide care to people with dementia. As a result, care will be supplied increasingly by untrained informal caregivers and volunteers. To promote effective care and avoid overburdening of untrained and trained caregivers, they must become properly skilled. To this end, the European Skills Training and Reskilling (STAR) project, which comprised experts from the domains of education, technology, and dementia care from 6 countries (the Netherlands, Sweden, Italy, Malta, Romania, and the United Kingdom), worked together to create and evaluate a multilingual e-learning tool. The STAR training portal provides dementia care training both for informal and formal caregivers. Objective The objective of the current study was to evaluate the user friendliness, usefulness, and impact of STAR with informal caregivers, volunteers, and professional caregivers. Methods For 2 to 4 months, the experimental group had access to the STAR training portal, a Web-based portal consisting of 8 modules, 2 of which had a basic level and 6 additional modules at intermediate and advanced levels. The experimental group also had access to online peer and expert communities for support and information exchange. The control group received free access to STAR after the research had ended. The STAR training portal was evaluated in a randomized controlled trial among informal caregivers and volunteers in addition to professional caregivers (N=142) in the Netherlands and the United Kingdom. Assessments were performed with self-assessed, online, standardized questionnaires at baseline and after 2 to 4 months. Primary outcome measures were user friendliness, usefulness, and impact of STAR on knowledge, attitudes, and approaches of caregivers regarding dementia. Secondary outcome measures were empathy, quality of life, burden, and caregivers’ sense of competence. Results STAR was rated positively by all user groups on both usefulness and user friendliness. Significant effects were found on a person-centered care approach and on the total score on positive attitudes to dementia; both the experimental and the control group increased in score. Regarding empathy, significant improvements were found in the STAR training group on distress, empathic concern, and taking the perspective of the person with dementia. In the experimental group, however, there was a significant reduction in self-reported sense of competence. Conclusions The STAR training portal is a useful and user-friendly e-learning method, which has demonstrated its ability to provide significant positive effects on caregiver attitudes and empathy.

Spirituality in pre-registration nurse education and practice: A review of the literature

Spirituality is known to be an integral part of holistic care, yet research shows that it is not well valued or represented in nurse education and practice. However, the nursing profession continues to make efforts to redress the balance by issuing statements and guidance for the inclusion of spirituality by nurses in their practice. A systematic literature review was undertaken and confirms that nurses are aware of their lack of knowledge, understanding and skills in the area of spirituality and spiritual care, and desire to be better informed and skilled in this area. Consequently, in order for nurses to support the spiritual dimension of their role, nurse education has a vital part to play in raising spiritual awareness and facilitating competence and confidence in this domain. The literature review also reveals that studies involving pre-registration are few, but those available do provide examples of innovation and various teaching methods to deliver this topic in nursing curricular.

A systematic review of religion and dementia care pathways in black and minority ethnic populations

Objective: To investigate how religion influences care pathways for black and minority ethnic individuals with dementia. We conducted a systematic search of the literature to explore how religion affects later presentation to care services, absence of care-seeking and dissatisfaction with care. Exclusion and Inclusion criteria were applied to the research literature. Qualitative and quantitative papers were included. Included studies were assessed independently by four authors according to quality criteria. Two US studies adhered to the final screening stage. Findings from these papers postulated that religion influences care in two polarised ways: (1) Religion hinders access to the traditional health care pathway. (2) Religion assists in positive coping. Collaboration between religious institutions and health care providers is required to improve care referral, provide information dissemination and relieve care-giver burden. UK research in this area is necessary.

In search of a theoretical basis for understanding religious coping: initial testing of an explanatory model

There is now good evidence that some religious ideas and perspectives have an influence on their adherents’ ability to cope with life stresses. However, there have been few attempts to explain this effect by recourse to experimentally-tested models of human cognition. In the present paper, the author argues that this shortfall both limits the usefulness of statistically-based studies and impedes the acceptance of religious or spiritual care as part of healthcare practice. A model based on that developed by cognitive psychologists of religion is subjected to initial, inductive testing in terms of its ability to explain some of the essential features and counter-intuitive results from the research literature on religious coping. The author concludes that, in the particular context represented by an individual in hospital, the model has significant explanatory potential and clarifies some recurring themes in the literature on coping.

The spirituality of people with late-stage dementia: a review of the research literature, a critical analysis and some implications for person-centred spirituality and dementia care

If spirituality is fundamental to personhood, it must be as integral to the life of a person with dementia as to any other person. In this paper, the author uses a three-stage process to explore the features, meanings and significance of spirituality in late-stage dementia. First, a critical literature review is undertaken to evaluate the present state of research and its methodological limitations. The second stage of the argument comprises a critical analysis of the available models of how spirituality may persist beyond the loss of cognitive and communicative capacity, leading the elucidation of two dimensions to spirituality (duration over time and the role of social space) that can sometimes be overlooked. Finally, these findings are brought to bear on wider questions of how person-centred spiritual care may be offered to people with dementia and the role of shared social values in building spiritual resilience.

The representation of service users' religious and spiritual concerns in care plans

Purpose – The aim of this study was to evaluate the efficacy with which care plans capture and make use of data on the spiritual and religious concerns of mental health service users in a UK Health and Social Care Trust. Design/methodology/approach – A questionnaire was given to service users (n=71) and the findings compared with the information held on their behalf by the relevant Health and Social Care Trust at three key points in the care planning process. Findings – The study found that the importance that many service users accorded to spirituality and religion was not reflected in the electronic records, that some information was wrong or wrongly nuanced when compared with the patients self-description and that service users themselves were often mistaken regarding the type and quality of information held on record. Practical implications – The implications of these findings are discussed in relation to the process of information gathering, to the training and support of Care Coordinators and to th...

Can Cognitive Science Rescue ‘Spiritual Care’ from a Metaphysical Backwater?

Abstract ‘Spiritual care’ has a valued but precarious place in contemporary UK health care. Although the term is widely used, it only attracts significant attention and resources related to care at the end of life; elsewhere, spiritual care is often under-resourced and perfunctory. The author argues that a major reason for this is that proponents of spiritual care have so far failed to speak a language comprehensible to practitioners and health managers more familiar with reductionist, evidence-based work. He proposes that current developments in the cognitive and evolutionary psychology of religion have the potential to provide such a language, and to refocus a subject that has been muddled by conceptual vagueness and the multiplication of assessment tools. As a result, attention to spirituality could be liberated from its current ghetto in palliative and long-term care and become more firmly embedded and integrated into everyday nursing practice.

Community without memory? In search of an ecclesiology of liberation in the company of people with dementia

The increasing prevalence of dementia among members of the Christian Churches prompts a re-evaluation of Christian ecclesiology. This is particularly true for the ecclesiology born of the theologies of liberation, because of the emphasis it places upon conscious participation in the historical life of the community. The present article draws on stories of people with dementia as recorded by themselves and those close to them; by reflection upon these stories, it seeks to re-think the character of the Church in the face of this challenge, and so to offer a richer interpretation of its identity as a community of liberation.

“Chaplains for Wellbeing” in Primary Care: A Qualitative Investigation of Their Perceived Impact for Patients’ Health and Wellbeing

Although Health Chaplaincy services are well-established in hospitals in the United Kingdom and across the world, Primary Care Chaplaincy is still in its infancy and much less extensively developed. This study explored the impact the introduction of a Primary Care “Chaplains for Wellbeing” service had upon patients’ experience and perceived health and well-being. Sixteen patients participated in one-one interviews. Transcripts were analyzed using interpretative phenomenological analysis (IPA). Patients reported circumstances that had eroded perceived self-efficacy, self-identity, and security manifesting as existential displacement; summarized under the superordinate theme of “loss.” “Loss” originated from a number of sources and was expressed as the loss of hope, self-confidence, self-efficacy, and sense of purpose and meaning. Chaplains used a wide range of strategies enabling patients to rebuild self-confidence and self-esteem. Person-centered, dignified, and responsive care offered in a supportive environment enabled patients to adapt and cope with existential displacement.

Alzheimer’s and the Dementia of God

Recent developments in the theory and practice of care for persons with dementia have reopened questions, traditionally explored by theologians, to do with the nature of personal identity and its dialectical relationship to social recognition. This new perspective on classical theological questions serves as a potential theological resource in contemporary western society, where God appears to have withdrawn from the prevailing public discourses. In this article, I explore the analogical potential of imagery of a ‘dementing God’, as a way to describe the contemporary experience of western Christians, to develop appropriate responses to the current climate in public theology and to continue to talk of God in public, while respecting Bonhoeffer’s desire to celebrate a secular world in which humanity may ‘come of age’.