"I wanna live and not think about the future" what place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study.

BACKGROUND: Little is known about how people with multiple sclerosis (MS) and their families comprehend advance care planning (ACP) and its relevance in their lives. AIM: To explore under what situations, with whom, how, and why do people with MS and their families engage in ACP. METHODS: We conducted a qualitative study comprising interviews with people living with MS and their families followed by an ethical discussion group with five health professionals representing specialties working with people affected by MS and their families. Twenty-seven people with MS and 17 family members were interviewed between June 2019 and March 2020. Interviews and the ethical discussion group were audio-recorded and transcribed verbatim. Data were analysed using the framework approach. RESULTS: Participants' narratives focused on three major themes: (i) planning for an uncertain future; (ii) perceived obstacles to engaging in ACP that included uncertainty concerning MS disease progression, negative previous experiences of ACP discussions and prioritising symptom management over future planning; (iii) Preferences for engagement in ACP included a trusting relationship with a health professional and that information then be shared across services. Health professionals' accounts from the ethical discussion group departed from viewing ACP as a formal document to that of an ongoing process of seeking preferences and values. They voiced similar concerns to people with MS about uncertainty and when to initiate ACP-related discussions. Some shared concerns of their lack of confidence when having these discussions. CONCLUSION: These findings support the need for a whole system strategic approach where information about the potential benefits of ACP in all its forms can be shared with people with MS. Moreover, they highlight the need for health professionals to be skilled and trained in engaging in ACP discussions and where information is contemporaneously and seamlessly shared across services.

A realist review of advance care planning for people with multiple sclerosis and their families.

BACKGROUND: Advance care planning (ACP) is reported to improve the quality of outcomes of care among those with life-limiting conditions. However, uptake is low among people living with multiple sclerosis (MS) and little is known about why or how people with MS engage in this process of decision-making. AIMS: To develop and refine an initial theory on engagement in ACP for people with MS and to identify ways to improve its uptake for those who desire it. METHODS: Realist review following published protocol and reporting following Realist and Meta-narrative Evidence Synthesis: Evolving Standards (RAMESES) guidelines. A multi-disciplinary team searched MEDLINE, PsychInfo, CINAHL, Scopus, Web of Science, Embase, Google Scholar in addition to other sources from inception to August 2019. Quantitative or qualitative studies, case reports, and opinion or discussion articles related to ACP and/or end of life discussions in the context of MS were included, as well as one article on physical disability and one on motor neuron disease, that contributed important contextual information. Researchers independently screened abstracts and extracted data from full-text articles. Using abductive and retroductive analysis, each article was examined for evidence to support or refute 'context, mechanism, and outcome' (CMO) hypotheses, using the Integrated Behaviour Model to guide theory development. Quality was assessed according to methodological rigour and relevance of evidence. Those studies providing rich descriptions were synthesised using a realist matrix to identify commonalities across CMO configurations. RESULTS: Of the 4,034 articles identified, 33 articles were included in the synthesis that supported six CMO hypotheses that identified contexts and mechanisms underpinning engagement in ACP for people with MS and included: acceptance of their situation, prior experiences, confidence, empowerment, fear (of being a burden, of death and of dying) and the desire for autonomy. Acceptance of self as a person with a life-limiting illness was imperative as it enabled people with MS to see ACP as pertinent to them. We identified the context of MS-its long, uncertain disease trajectory with periods of stability punctuated by crisis-inhibited triggering of mechanisms. Similarly, the absence of skills and confidence in advanced communication skills among health professionals prevented possibilities for ACP discussions taking place. CONCLUSION: Although mechanisms are inhibited by the context of MS, health professionals can facilitate greater uptake of ACP among those people with MS who want it by developing their skills in communication, building trusting relationships, sharing accurate prognostic information and sensitively discussing death and dying.

Mixed-methods single-arm repeated measures study evaluating the feasibility of a web-based intervention to support family carers of persons with dementia in long-term care facilities.

BACKGROUND: Following institutionalization of a relative with Alzheimer disease and related dementias (ADRD), family carers continue to provide care. They must learn to negotiate with staff and navigate the system all of which can affect their mental health. A web-based intervention, My Tools 4 Care-In Care (MT4C-In Care) was developed by the research team to aid carers through the transitions experienced when their relative/friend with ADRD resides in a long-term care (LTC) facility. The purpose of this study was to evaluate MT4C-In Care for feasibility, acceptability, ease of use, and satisfaction, along with its potential to help decrease carer's feelings of grief and improve their hope, general self-efficacy, and health-related quality of life. METHODS: The study was a mixed-methods single-arm repeated measures feasibility study. Participants accessed MT4C-In Care over a 2-month period. Data were collected at baseline and 1 and 2 months. Using a checklist, participants evaluated MT4C-In Care for ease of use, feasibility, acceptability, and satisfaction. Measures were also used to assess the effectiveness of the MT4C-In Care in improving hope (Herth Hope Index), general self-efficacy (GSES), loss and grief (NDRGEI), and health-related quality of life (SF12v2) of participants. Qualitative data were collected at 2 months and informed quantitative findings. RESULTS: The majority of the 37 participants were female (65%; 24/37), married (73%; 27/37), and had a mean age of 63.24 years (SD = 11.68). Participants reported that MT4C-In Care was easy to use, feasible, and acceptable. Repeated measures ANOVA identified a statistically significant increase over time in participants hope scores (p = 0.03) and a significant decrease in grief (< 0.001). Although significant differences in mental health were not detected, hope (r = 0.43, p = 0.03) and grief (r = - 0.66, p < 0.001) were significantly related to mental health quality of life. CONCLUSION: MT4C-In Care is feasible, acceptable, and easy to use and shows promise to help carers of family members with ADRD residing in LTC increase their hope and decrease their grief. This study provides the foundation for a future pragmatic trial to determine the efficacy of MT4C-In Care. TRIAL REGISTRATION: ClinicalTrials.gov NCT03571165. June 30, 2018 (retrospectively registered).

Development, Implementation, and Evaluation of a Curriculum to Prepare Volunteer Navigators to Support Older Persons Living With Serious Illness.

The purpose of this article is to report the development, implementation, and evaluation of a curriculum designed to prepare volunteer navigators to support community-dwelling older persons with serious chronic illness. The role of the volunteer navigator was to facilitate independence and quality of life through building social connections, improving access to resources, and fostering engagement. A curriculum was constructed from evidence-based competencies, piloted and revised, and then implemented in 7 subsequent workshops. Workshop participants were 51 volunteers and health-care providers recruited through local hospice societies and health regions. Curriculum was evaluated through satisfaction and self-efficacy questionnaires completed at workshop conclusion. Postworkshop evaluation indicated a high degree of satisfaction with the training. One workshop cohort of 7 participants was followed for 1 year to provide longitudinal evaluation data. Participants followed longitudinally reported improved self-efficacy over 12 months and some challenges with role transition. Future improvements will include further structured learning opportunities offered by telephone postworkshop, focusing on advocacy, communication, and conflict management. Overall, volunteers were satisfied with the curriculum and reported good self-perceived efficacy in their new role as navigators.

The psychosocial experiences of older palliative patients while participating in a Living with Hope Program.

OBJECTIVE: Several studies have reported the effectiveness of a variety of psychosocial interventions in increasing levels of hope in palliative care patients. The experience of palliative patients while participating in these interventions is unknown. Understanding these experiences would provide a rich understanding of how the interventions work to foster hope. The purpose of the present study was to describe the psychosocial processes that participants with advanced cancer receiving palliative care experienced when taking part in a Living with Hope Program (LWHP). METHOD: In the context of a study evaluating the LWHP, data were collected from 13 dyads (persons with advanced cancer and their caregivers) at two timepoints (one week apart). A thematic qualitative analysis of 52 open-ended audiotaped interviews was conducted that focused on the psychosocial processes that occurred during the LWHP. RESULTS: The average age of palliative participants was 67 (SD = 6.6) and of their family caregivers 61 years of age (SD = 13.9). A thematic analysis suggested that the participants experienced the following psychosocial processes while participating in the LWHP: (1) reminiscing, (2) leaving a legacy, (3) positive reappraisal, and (4) motivational processes. These processes are the mechanisms by which the LWHP fosters the positive outcomes of increasing hope and improving quality of life. As well, the finding of motivational processes suggested that the LWHP may also increase life satisfaction, which is an outcome of motivational processes. Significance of the results: The findings from our study underscore the importance of uncovering the psychosocial processes through which the LWHP works to foster hope. They will assist in making revisions to the intervention that will increase its effectiveness, as well as providing a better understanding of hope in persons with advanced cancer.

Joy and happiness: a simultaneous and evolutionary concept analysis.

AIM: To report a simultaneous and evolutionary analysis of the concepts of joy and long-term happiness. BACKGROUND: Joy and happiness are underrepresented in the nursing literature, though negative concepts are well represented. When mentioned in the literature, neither joy nor happiness is adequately defined, explained, or clearly understood. To promote further investigation of these concepts in nursing and to explore their relationship with health and healing, conceptual clarity is an essential first step. DESIGN: Concept analysis. DATA SOURCES: The following databases were searched, without time restrictions, for articles in English: Academic Search Complete, Anthropology Plus; ATLA Religious Database with ATLASerials; Cumulative Index of Nursing and Allied Health Literature (CINAHL); Education Research Complete; Humanities International Complete; Psych EXTRA; and SocINDEX with Full Text. The final sample size consists of 61 articles and one book, published between 1978-2014. METHOD: An adapted combination of Rodgers' Evolutionary Model and Haase et al.'s Simultaneous Concept Analysis (SCA) method. RESULTS: Though both are positive concepts, joy and happiness have significant differences. Attributes of joy describe a spontaneous, sudden and transient concept associated with connection, awareness, and freedom. Attributes of happiness describe a pursued, long-lasting, stable mental state associated with virtue and self-control. CONCLUSION: Further exploration of joy and happiness is necessary to ascertain their relationship with health and their value to nursing practice and theory development. Nurses are encouraged to consider the value of positive concepts to all areas of nursing.

The "good death": An integrative literature review.

OBJECTIVE: The "good death" is a dynamic concept and has evolved over time to become a "revivalist" good death: a planned, peaceful, and dignified death, at home, surrounded by family members. As the "good death" continues to evolve, the key questions are: How do cultural perceptions of death and dying change? What are the forces that shape Western attitudes and beliefs around death and dying? And how does the "good death" discourse frame the dying experience in contemporary society? The purpose of this manuscript is to describe the underlying discourse in the literature on the "good death" in Western societies. METHOD: An integrative literature review of data from experimental and nonexperimental sources in PubMed, CINAHL, PsychINFO, and SocINDEX of 39 articles from 1992 to 2014. RESULTS: Four main themes emerged from reviewing 39 articles on the "good death": (1) the "good death" as control, (2) the wrong "good death," (3) the threatened "good death," and (4) the denial of dying. SIGNIFICANCE OF RESULTS: Evolving in response to prominent social attitudes and values, the contemporary "good death" is a powerful, constraining discourse that limits spontaneity and encourages one way to die. Social, political, and demographic changes now threaten the stability of the "good death"; dying is framed as an increasingly negative or even unnecessary process, thus marginalizing the positive aspects of dying and rendering dying absent, invisible.