Kerstin Roger

Use of social commitment robots in the care of elderly people with dementia: A literature review

Globally, the population of elderly people is rising with an increasing number of people living with dementias. This trend is coupled with a prevailing need for compassionate caretakers. A key challenge in dementia care is to assist the person to sustain communication and connection to family, caregivers and the environment. The use of social commitment robots in the care of people with dementia has intriguing possibilities to address some of these care needs. This paper discusses the literature on the use of social commitment robots in the care of elderly people with dementia; the contributions to care that social commitment robots potentially can make and the cautions around their use. Future directions for programs of research are identified to further the development of the evidence-based knowledge in this area.

A literature review of palliative care, end of life, and dementia

OBJECTIVE Little attention has been paid in research to the palliative care of those dying with dementia. This literature review summarizes current research in the social sciences, including medical sociology on palliative care in the example of dementia. METHODS A designated set of search words was applied to a comprehensive set of university-based search engines to ensure that relevant social science research since 200 was included. RESULTS Primary themes discussed in the article include person-centered care, grief, agitation, aggression, pain management, care provision, training and education, decision-making, primary settings of care, and spirituality and dignity. Other key gaps in the literature are discussed. SIGNIFICANCE OF THE RESULTS: Given the projected increase within the next 20 years of people dying with dementia (Hanrahan et al., 2001), palliative care for those dying with dementia will become more relevant than ever.

Understanding the needs of family caregivers of older adults dying with dementia.

OBJECTIVES A challenge in understanding the needs of dementia family caregivers (DFC) within the purview of dementia as a terminal illness rests on the fact that literature in this area is dispersed across disciplines and not specifically grounded within the realm of palliative care. The objective of this paper is to describe the domains of DFC needs and their impact on the delivery of palliative care services. METHODS A literature search pertaining to dementia family caregivers and palliative/end-of-life care was conducted using the databases Medline, CINHAL, Ageline, PsychInfo, and Scopus for articles published in the English language between 1997 and 2011. RESULTS Supporting family caregivers of individuals with dementia throughout the disease trajectory requires consideration of caregivers : (1) physical, emotional, and psychological needs; (2) information and decisional support needs; and (3) instrumental support needs. The unique nature and prolonged duration of these needs directly influences the palliative care services and supports required by these family caregivers. SIGNIFICANCE OF RESULTS Understanding the scope of DFC needs help further our understanding of how these needs may impact the delivery of palliative care services, and assists in developing a model of care for those dying from dementia and for their family caregivers.

Social Aspects of HIV/AIDS and Aging: A Thematic Review

Il manque de recherche spécifique qui décrit les aspects sociaux du vieillissement avec le virus de l’immunodéficience humaine/syndrome d’immunodéficience acquise (VIH/SIDA) au Canada, malgré une augmentation globale de la population viellissante et l’augmentation du nombre de ceux qui vieillissent avec le VIH/SIDA. Une revue systématique de la littérature été menée en se focalisant sélectivement sur les aspects sociaux aux personnes âgées vivant avec le VIH/SIDA. Les thèmes principaux qui se dégagent dans la littérature sont l’âgisme et la stigmatisation, le sexe, la santé mentale et les soutiens sociales. On présente des recommandations sur la recherche à l’avenir, les modèles théoriques, et le programmatisation.

Living with Parkinson’s disease - managing identity together

The specific aim of this paper is to discuss how individuals living with Parkinsons disease and their main family supports perceive communications with each other, with a focus on their roles related to care. The paper is based on individual interviews conducted with individuals and their main family support person. The transcripts were analyzed based on grounded theory and “managing identity together” emerged as the core category. This is discussed in terms of independence, a sense of self-sufficiency and an overall sense of personhood. Implications for other populations conclude the paper.

Priorities for people living with dementia: education, counseling, research.

Hearing the voices of people living with dementia assists in a better understanding of their experiences. This understanding can pave the way for improved community-based service delivery such as education and counseling, as well as including them more frequently as research participants. The voices of people living with dementia have not been well represented in research, resulting in very few data describing their experiences. This paper describes empirical qualitative data from a study that asked people with Alzheimer’s and Huntington’s disease about their experiences. Recommendations are provided on education, counseling, and research.

Coping, adapting or self-managing – what is the difference? A concept review based on the neurological literature

AIM The aim of this study was to report: (1) an analysis of the concepts of coping, adaptation and self-management in the context of managing a neurological condition; and (2) the overlap between the concepts. BACKGROUND The three concepts are often confused or used interchangeably. Understanding similarities and differences between concepts will avoid misunderstandings in care. The varied and often unpredictable symptoms and degenerative nature of neurological conditions make this an ideal population in which to examine the concepts. DESIGN Concept analysis. DATA SOURCES Articles were extracted from a large literature review about living with a neurological condition. The original searches were conducted using SCOPUS, EMBASE, CINAHL and Psych INFO. Seventy-seven articles met the inclusion criteria of: (1) original article concerning coping, adaptation or self-management of a neurological condition; (2) written in English; and (3) published between 1999-2011. METHODS The concepts were examined according to Morses concept analysis method; structural elements were then compared. RESULTS Coping and adaptation to a neurological condition showed statistically significant overlap with a common focus on internal management. In contrast, self-management appears to focus on disease-controlling and health-related management strategies. Coping appears to be the most mature concept, whereas self-management is least coherent in definition and application. CONCLUSION All three concepts are relevant for people with neurological conditions. Healthcare teams need to be cautious when using these terms to avoid miscommunication and to ensure clients have access to all needed interventions. Viewing the three concepts as a complex whole may be more aligned with client experience.

“How can I still be me?”: Strategies to maintain a sense of self in the context of a neurological condition

The Living with a Neurological Condition (LINC) study was part of the National Population Health Study of Neurological Conditions conducted in Canada. This article describes empirical original qualitative data collected in the third and final phase of this study and examines how individuals living with a neurological condition maintain continuity of their sense of self, with a particular focus on their strategies. Fifteen interviews were analysed for this paper. Emerging strategies for maintaining sense of self include: (1) avoidance and denial, (2) cognitive reframing, (3) articulation of the self through imagined positive identity, (4) strategies that reconnect to identity in the past, (5) adjusting and altering goals, (6) spiritual activities, (7) humour, (8) comparison with others: identity as shaped through social constructs, and (9) creating communities: a reciprocal reflection of self.The Living with a Neurological Condition (LINC) study was part of the National Population Health Study of Neurological Conditions conducted in Canada. This article describes empirical original qualitative data collected in the third and final phase of this study and examines how individuals living with a neurological condition maintain continuity of their sense of self, with a particular focus on their strategies. Fifteen interviews were analysed for this paper. Emerging strategies for maintaining sense of self include: (1) avoidance and denial, (2) cognitive reframing, (3) articulation of the self through imagined positive identity, (4) strategies that reconnect to identity in the past, (5) adjusting and altering goals, (6) spiritual activities, (7) humour, (8) comparison with others: identity as shaped through social constructs, and (9) creating communities: a reciprocal reflection of self.The Living with a Neurological Condition (LINC) study was part of the National Population Health Study of Neurological Conditions conducted in Canada. This article describes empirical original qualitative data collected in the third and final phase of this study and examines how individuals living with a neurological condition maintain continuity of their sense of self, with a particular focus on their strategies. Fifteen interviews were analysed for this paper. Emerging strategies for maintaining sense of self include: (1) avoidance and denial, (2) cognitive reframing, (3) articulation of the self through imagined positive identity, (4) strategies that reconnect to identity in the past, (5) adjusting and altering goals, (6) spiritual activities, (7) humour, (8) comparison with others: identity as shaped through social constructs, and (9) creating communities: a reciprocal reflection of self.

Choosing an out-of-hospital birth centre: Exploring women's decision-making experiences

OBJECTIVE the primary objective for this study was to explore womens experiences of choosing to plan a birth at an out-of-hospital birth centre. We sought to understand how women make the choice to plan for an out-of-hospital birth and the meaning that women ascribe to this decision-making process. DESIGN, SETTING, AND PARTICIPANTS a qualitative phenomenological study was conducted in Winnipeg, Canada with a sample of seventeen post partum women who represent the socio-demographic characteristics of the actual users of the Birth Centre in Winnipeg. The women participated in semistructured interviews. Through a feminist perspective and using interpretative phenomenological analysis (IPA), each participants experience of birthplace decision-making was explored. FINDINGS six themes emerged through the analysis: (1) Making the decision in the context of relationships; (2) Exercising personal agency; (3) An expression of ones ideology; (4) Really thinking it through; (5) Fitting into the eligibility criteria; and (6) The psychology of the space. The findings suggested that a womans sense of safety was related to each of these themes. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE the birth centre decision-making experience has many similarities to the homebirth decision-making process. The visceral impact of the physical design of the facility plays an important role and differentiates the birth centre decision from other birth setting options. The concept of relational autonomy was emphasised in this study, in that women make the decision in the context of their relationships with their midwives and partners. The study has implications for midwifery practice and health-care policy related to: client education on birth settings, design of birth environments, validation of the birth centre concept, and upholding the women-centred midwifery model of care. The study highlighted the importance of increasing access to out-of-hospital birth centres.

The Emotional Labor of Personal Grief in Palliative Care: Balancing Caring and Professional Identities:

The paid provision of care for dying persons and their families blends commodified emotion work and attachments to two often-conflicting role identities: the caring person and the professional. We explore how health care employees interpret personal grief related to patient death, drawing on interviews with 12 health care aides and 13 nurses. Data were analyzed collaboratively using an interpretively embedded thematic coding approach and constant comparison. Participant accounts of preventing, postponing, suppressing, and coping with grief revealed implicit meanings about the nature of grief and the appropriateness of grief display. Employees often struggled to find the time and space to deal with grief, and faced normative constraints on grief expression at work. Findings illustrate the complex ways health care employees negotiate and maintain both caring and professional identities in the context of cultural and material constraints. Implications of emotional labor for discourse and practice in health care settings are discussed.