Genevieve Thompson

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.

Dignity-based approaches in the care of terminally ill patients

Purpose of reviewPromoting dignified dying is an altruistic goal in palliative care. Until recently, what was meant by this construct was poorly understood. This review seeks to clarify what is meant by dignity at the end of life, what threatens dignity, and evidence of the domains that define dignity. A model of dignity is proposed from which interventions can be derived. Recent findingsA paucity of research exists exploring the concept of dignity. What can be gleaned from this work is that dignity is socially constructed and mediated in our relationships with others. Research has noted that self-perceived burden, depression, hopelessness, and ‘the reflection patients see of themselves in the eye of the beholder’ are intimately connected to ones notion of dignity. A model of dignity in the terminally ill has been developed that outlines three areas that are most influential in shaping dignity. Interventions such as dignity therapy and critical personal reflection are proposed as tools to promote dignity. SummaryDespite the fact that little research exists exploring the notion of dignity at the end of life, a robust model of dignity exists and is helpful in directing interventions aimed at improving care at the end of life.

Dying in a nursing home: treatable symptom burden and its link to modifiable features of work context.

IMPORTANCE High-quality care at the end of life supports freedom from pain and other potentially burdensome symptoms. Lowering symptom burden at the end of life is an urgent and achievable goal in delivering services in nursing home settings. Few published reports describe symptom burden among older adults in nursing homes; none examine links between symptom burden and modifiable features of nursing home organizational context (work environment). OBJECTIVES To examine the influence of organizational context on symptom burden and to compare symptom burden in the last year of life between nursing home residents with and without dementia. DESIGN Retrospective analysis of longitudinal survey data. SETTING A stratified random sample of 36 nursing homes in the Canadian provinces of Alberta, Manitoba, and Saskatchewan. PARTICIPANTS A total of 2635 residents with dementia and 1012 without dementia; 1381 front-line care staff. MEASUREMENTS (1) Trajectories of 6 symptoms (dyspnea, pain, pressure ulcers, urinary tract infections, challenging behavior, delirium), assessed with the Resident Assessment Instrument-Minimum Data Set, version 2.0, between 2008 and 2012. All residents received assessments in each quarter of the year before death. (2) Modifiable organizational context, assessed with the Alberta Context Tool. Hierarchical mixed model, repeated measures regression, to simultaneously evaluate effects of time, dementia, and context on symptom trajectories. RESULTS For all residents, prevalence of symptoms increased over time. In the last quarter before death, challenging behavior was the most frequent symptom in the dementia group (40.2%), delirium the most frequent symptom in the nondementia group (31.0%), and urinary tract infections least frequent (9.0% to 10.0%). Facilities with more favorable context had significantly higher prevalence of challenging behavior and delirium and significantly lower use of antipsychotics without diagnosis of psychosis. CONCLUSION Symptom burden increases as the end of life approaches but differs between high- and low-context facilities and between residents with and without dementia. Trajectories of treatable, burdensome symptoms at the end of life in nursing homes should be a priority focus for quality improvement. Modifiable features of organizational context that are linked to symptom burden offer new potential strategies and interventions for quality improvement.

Providing end-of-life care in care homes for older people: a qualitative study of the views of care home staff and community nurses.

The study aimed to explore the views of care home staff (CHS) and community nurses (CNs) on providing end-of-life care (EOLC) in care homes. Participants were randomly selected and qualitative interviews conducted with 80 CHS and 10 CNs. Themes emerging from the data included the following: The meaning of EOLC; starting EOLC; dying in the care home; stress of providing EOLC; improving EOLC; and the role of the CN. CHS felt that planning for the end of life was important before residents reached the dying phase, which some found difficult to determine. Although CHS wished to avoid residents being transferred to hospital to die, they acknowledged that improvements in their skills and the resources available to them were needed to manage EOLC effectively. CNs were critical of the EOLC provided in some care homes, reporting tensions over their relationship with CHS. As the number of older people who die in care homes increases, there is a need to overcome these barriers to provide good EOLC.

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.

Reducing the potential for suffering in older adults with advanced cancer

OBJECTIVE To deliver quality care at the end of life, understanding the impact of various changes and life transitions that occur in older age is essential. This review seeks to uncover potential sources of distress in an elders physical, psychological, social, and spiritual well-being to shed light on the unique challenges and needs facing this age group. METHODS Papers relating to older adults (aged 65 years and older or a mean age of 65 years and older) with advanced/terminal cancer receiving palliative, hospice, or end-of-life care published after 1998 were reviewed. RESULTS Older adults with advanced cancer have unique needs related to changes in their physical, psychological, social, and spiritual well-being. Changes in each of these domains offer not only the risk of causing distress but also the potential for growth and development during the final stages of advanced cancer. SIGNIFICANCE OF RESULTS Being aware of the various changes that occur with aging will help health care professionals tailor interventions to promote dignity-conserving care and greatly reduce the potential for suffering at the end of life.

Dignity and Distress towards the End of Life across Four Non-Cancer Populations

Objective The purpose of this study was to identify four non-cancer populations that might benefit from a palliative approach; and describe and compare the prevalence and patterns of dignity related distress across these diverse clinical populations. Design A prospective, multi-site approach was used. Setting Outpatient clinics, inpatient facilities or personal care homes, located in Winnipeg, Manitoba and Edmonton, Alberta, Canada. Participants Patients with advanced Amyotrophic Lateral Sclerosis (ALS), Chronic Obstructive Pulmonary Disease (COPD), End Stage Renal Disease (ESRD); and the institutionalized alert frail elderly. Main Outcome Measure In addition to standardized measures of physical, psychological and spiritual aspects of patient experience, the Patient Dignity Inventory (PDI). Results Between February 2009 and December 2012, 404 participants were recruited (ALS, 101; COPD, 100; ESRD, 101; and frail elderly, 102). Depending on group designation, 35% to 58% died within one year of taking part in the study. While moderate to severe loss of sense of dignity did not differ significantly across the four study populations (4–11%), the number of PDI items reported as problematic was significantly different i.e. ALS 6.2 (5.2), COPD 5.6 (5.9), frail elderly 3.0 (4.4) and ESRD 2.3 (3.9) [p < .0001]. Each of the study populations also revealed unique and distinct patterns of physical, psychological and existential distress. Conclusion People with ALS, COPD, ESRD and the frail elderly face unique challenges as they move towards the end of life. Knowing the intricacies of distress and how they differ across these groups broadens our understanding of end-of-life experience within non-cancer populations and how best to meet their palliative care needs.

Postgraduate Palliative care education: Evaluation of a South African Programme

AIM We aimed to assess the postgraduate palliative care distance education programme of the University of Cape Town (UCT) in terms of its perceived ability to influence palliative care delivery. METHODS A mixed-methods approach, consisting of two surveys using open-ended and multiple-choice options, was conducted from January to December 2007 at the UCT School of Public Health and Family Medicine. All students registered in the programme from 2000 - 2007 were invited to participate; 83 (66.4% of all eligible participants) completed the general survey, and 41 (65.7%) of the programmes graduates completed the graduate survey. The survey scores and open-ended data were triangulated to evaluate UCTs palliative care postgraduate programme. RESULTS General survey scores of graduates were significantly higher in 5 of the 6 categories in comparison with current students. The graduate survey indicated that curriculum and teaching strengths were in communication and dealing with challenging encounters. Graduates also stressed the need to develop a curriculum that incorporated a practical component. CONCLUSIONS In addition to current postgraduate training, palliative care education in South Africa should be extended to undergraduate medical students, as the benefits of UCTs programme were limited to a small cohort of practitioners.

Development and evaluation of the Dignity Talk question framework for palliative patients and their families: A mixed-methods study:

Background: Effective patient–family communication can reduce patients’ psychosocial distress and relieve family members’ current suffering and their subsequent grief. However, terminally ill patients and their family members often experience great difficulty in communicating their true feelings, concerns, and needs to each other. Aim: To develop a novel means of facilitating meaningful conversations for palliative patients and family members, coined Dignity Talk, explore anticipated benefits and challenges of using Dignity Talk, and solicit suggestions for protocol improvement. Design: A convergent parallel mixed-methods design. Dignity Talk, a self-administered question list, was designed to prompt end-of-life conversations, adapted from the Dignity Therapy question framework. Participants were surveyed to evaluate the Dignity Talk question framework. Data were analyzed using qualitative and quantitative methods. Setting/participants: A total of 20 palliative patients, 20 family members, and 34 healthcare providers were recruited from two inpatient palliative care units in Winnipeg, Canada. Results: Most Dignity Talk questions were endorsed by the majority of patients and families (>70%). Dignity Talk was revised to be convenient and flexible to use, broadly accessible, clearly stated, and sensitively worded. Participants felt Dignity Talk would be valuable in promoting conversations, enhancing family connections and relationships, enhancing patient sense of value and dignity, promoting effective interaction, and attending to unfinished business. Participants suggested that patients and family members be given latitude to respond only to questions that are meaningful to them and within their emotional capacity to broach. Conclusion: Dignity Talk may provide a gentle means of facilitating important end-of-life conversations.

Keep in touch (KIT): perspectives on introducing internet-based communication and information technologies in palliative care

BackgroundHospitalized palliative patients need to keep in touch with their loved ones. Regular social contact may be especially difficult for individuals on palliative care in-patient units due to the isolating nature of hospital settings. Technology can help mitigate isolation by facilitating social connection. This study aimed to explore the acceptability of introducing internet-based communication and information technologies for patients on a palliative care in-patient unit.MethodsIn the first phase of the Keep in Touch (KIT) project, a diverse group of key informants were consulted regarding their perspectives on web-based communication on in-patient palliative care units. Participants included palliative patients, family members, direct care providers, communication and information technology experts, and institutional administrators. Data was collected through focus groups, interviews and drop-in consultations, and was analyzed for themes, consensus, and major differences across participant groups.ResultsHospitalized palliative patients and their family members described the challenges of keeping in touch with family and friends. Participants identified numerous examples of ways that communication and information technologies could benefit patients’ quality of life and care. Patients and family members saw few drawbacks associated with the use of such technology. While generally supportive, direct care providers were concerned that patient requests for assistance in using the technology would place increased demands on their time. Administrators and IT experts recognized issues such as privacy and costs related to offering these technologies throughout an organization and in the larger health care system.ConclusionsThis study affirmed the acceptability of offering internet-based communication and information technologies on palliative care in-patient units. It provides the foundation for trialing these technologies on a palliative in-patient unit. Further study is needed to confirm the feasibility of offering these technologies at the bedside.