CELPI: trial protocol for a randomised controlled trial of a Carer End of Life Planning Intervention in people dying with dementia.

BACKGROUND: Dementia is a leading cause of death in developed nations. Despite an often distressing and symptom laden end of life, there are systematic barriers to accessing palliative care in older people dying of dementia. Evidence exists that 70% of people living with severe dementia attend an emergency department (ED) in their last year of life. The aim of this trial is to test whether a Carer End of Life Planning Intervention (CELPI), co-designed by consumers, clinicians and content specialists, improves access to end of life care for older people with severe dementia, using an ED visit as a catalyst for recognising unmet needs and specialist palliative care referral where indicated. METHODS: A randomised controlled trial (RCT) enrolling at six EDs across three states in Australia will be conducted, enrolling four hundred and forty dyads comprising a person with severe dementia aged ≥ 65 years, and their primary carer. Participants will be randomly allocated to CELPI or the control group. CELPI incorporates a structured carer needs assessment and referral to specialist palliative care services where indicated by patient symptom burden and needs assessment. The primary outcome measure is death of the person with dementia in the carer-nominated preferred location. Secondary outcomes include carer reported quality of life of the person dying of dementia, hospital bed day occupancy in the last 12 months of life, and carer stress. An economic evaluation from the perspective of a health funder will be conducted. DISCUSSION: CELPI seeks to support carers and provide optimal end of life care for the person dying of dementia. This trial will provide high level evidence as to the clinical and cost effectiveness of this intervention. TRIAL REGISTRATION: ACTRN12622000611729 registered 22/04/2022.

Factors associated with good self-management in older adults with a schizophrenic disorder compared with older adults with physical illnesses.

The number of older people living with a schizophrenic disorder (SD) is increasing yet little attention paid has been paid to the needs of this population relative to people with other chronic illnesses. In order to achieve optimal functioning people with a SD need to manage their illness and its impact; therefore, this study set out to determine the factors associated with self-management in this population. The illness management of people over 50 years of age and living with schizophrenia (n= 84) was compared with their peers who were diagnosed with a chronic physical illness (n= 216). Participants completed a survey that included an illness management inventory, self-rated health and sense of coherence. The results demonstrated that participants with a SD had lower illness management levels, particularly for understanding their symptoms and taking appropriate actions in relation to health care. Poor self-rated health and the presence of comorbid conditions had a pervasive negative effect on self-management factors in the SD group, whereas being married, having a greater sense of coherence and being voluntary to treatment had a positive effect. Nurses need to develop strategies to address general health and self-management in older adults living with a SD.

The response of healthcare services to people at risk of suicide: a qualitative study.

OBJECTIVE: This paper describes a small qualitative research study conducted in the area of suicide. Family and close friends of 15 young people who lived in Sydney, New South Wales, prior to their suicide, between 1990 and 1995, were interviewed to elicit their perceptions of the healthcare support given to the suicidees prior to their death. METHOD: Content analysis of in-depth interview transcripts identifying common themes in the description of the participants' experiences and impressions was carried out. A recurring theme was their call for more proactive management and support programs for people at risk of suicide, as well as education and support for close family and friends. RESULT: Participants claimed that they believed there were inadequate supports in place, that information and education were uncoordinated and sparse, and that healthcare workers were not effective in preventing suicide attempts because they lacked adequate diagnostic and management skills and displayed poor attitudes towards suicidees. CONCLUSION: Experiences of care received and suggestions for improving them by people closely associated with suicide, provide healthcare staff with important information about the types of information, education and support that those at risk of suicide and their loved ones require at a time of crisis.

Facilitating positive changes in community dementia management through participatory action research.

This paper reports on a participatory action research study which arose out of the initiatives of people caring for clients attending a multicultural dementia day-care program. Through a democratic decision making process, the day-care staff and family carers consulted with clients to design, implement and evaluate a new therapy program. The researchers acted as facilitators in this process, with a view to empowering participants at each stage in the action research cycles. What started out as a negative situation for the majority of study participants, evolved to become a satisfying group process and positive outcomes resulted from the therapy program itself. For clients there was the renewal of close personal relationships with family carers, increased alertness and a reduction in some of their distressing symptoms. For the family carers, there arose an awareness of new purposes in the caring role and therefore less distress in their daily lives, for day-care staff there emerged a re-conceptualisation of purpose of dementia care programs and the benefits to be gained from community collaboration in program design. The focus of this paper is to describe the action research process, which resulted in positive outcomes for the study participants.

Facilitating the process of critical thinking for nursing.

An exploratory study was conducted during 1995 to examine the degree to which critical thinking was encouraged in nursing education throughout New South Wales (NSW), Australia. The study identified whether a sample of graduate nurses and nurse educators at 12 faculties of nursing in NSW shared similar ideas about what critical thinking entails, the best ways in which to develop critical thinking processes and whether critical thinking is a reasonable way for nurses to achieve skilled and effective nursing interventions. The findings indicate that both nursing students and nurse educators favour the facilitation of critical thinking for nursing for very practical reasons. These refer to improving professional standards of practice, stimulating inquiry and promoting sound reasoning in practice, as well as contributing to personal and professional development. Study participants were found to favour a variety of teaching and learning strategies for critical thinking, and this finding is the focus for this discussion paper. The majority of participants stated that nurses would perhaps be better able to abstract principles of thinking from the specific contexts in which they are practised. Strategies found effective for nursing practice included a variety of approaches: direct learning of skills that contribute to critical thinking, such as analysis; infusion, or integration of critical thinking in all areas of learning; and learning to think critically within distinct disciplines of thought. Analysis of the findings, therefore, suggests that critical thinking is thought to be an important component of nursing practice and that in nursing it is a complex activity, requiring a combination of dispositions, abilities and approaches that can be developed by drawing on a range of learning strategies.

New approaches to health and well-being for dementia day-care clients, family carers and day-care staff.

This study was conducted in one multicultural dementia day-care centre over a period of 18 months. It introduced a gentle hand treatment for clients using three essential oils. The study evolved out of the process of action research where the family carers and day-care staff participated with the researchers to choose, design, develop and evaluate a hand treatment programme. Data was collected through in-depth interviews pre- and post-treatment, focus group discussions, client observation logbooks and a disability scale. The findings indicate a positive strengthening of the relationship between the person with dementia and their family carer, and an improvement in feelings of health and well-being for both. The specific improvements for clients include increased alertness, self-hygiene, contentment, initiation of toileting, sleeping at night and reduced levels of agitation, withdrawal and wandering. Family carers have reported less distress, improved sleeping patterns and feelings of calm. They also found the treatment useful in helping them manage the difficult behaviours exhibited by their relative with dementia. The benefits of this treatment for nursing practice are that it is safe, effective and easily administered by staff in any setting.

Treatment of MOPP-refractory Hodgkin's disease with vinblastine, doxorubicin, bleomycin, CCNU, and dacarbazine.

Eighteen patients with advanced Hodgkin's disease, refractory to combination chemotherapy with nitrogen mustard, vincristine, prednisone, and procarbazine (MOPP), were treated with vinblastine, doxorubicin (Adriamycin), bleomycin, CCNU, and dacarbazine (DTIC) (VABCD). Fifteen patients had Stage IV disease and 11 had systemic symptoms. Although hematologic toxicity was considerable, there was no drug related mortality. Eight patients achieved a complete remission (CR), and five are currently in a continuous CR of five, 24, 30, 34, and 36 months duration, respectively. An additional patient had a 30-month CR and relapsed with localized lymphadenopathy and is currently disease-free following involved-field radiotherapy 46 months from initiation of VABCD. This study suggests that long-term disease-free survival and potential cure can be achieved with VABCD in MOPP-refractory Hodgkin's disease.

Random prospective study cyclophosphamide, doxorubicin, and methotrexate (CAM) combination chemotherapy versus single-agent sequential chemotherapy in non small cell lung cancer.

A group of 104 patients with unresectable non-small cell lung cancer were randomized to receive combination chemotherapy with cyclophosphamide, doxorubicin, and methotrexate (CAM) or single-agent sequential chemotherapy with the same three agents. CAM combination chemotherapy produced a 22% objective response rate, including two complete remissions, compared to a 9% response rate, including one complete remission, produced by single-agent therapy (P = 0.16). The median survival time was 32 weeks (range, 3-116) for CAM, compared to 25 weeks (range, 4-179 +) for sequential single agents (P = 0.24). Overall survival was 31% (1-year), (16%) (1 1/2-year), and 5% (2-year), with no difference between the study arms. Although there was no statistically significant survival advantage for the CAM arm, both arms had survival superior to that in historical controls, presumably because of better patient selection. This study indicates that cyclophosphamide, doxorubicin, and methotrexate are, at best, marginally active as single agents, and new drugs with more efficacy are needed before combination chemotherapy can be expected to result in any meaningful prolongation of survival in non-small cell lung cancer.