Christine Toye

Part 1: Home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998-2008)

The changing context of palliative care over the last decade highlights the importance of recent research on home-based family caregiving at the end of life. This article reports on a comprehensive review of quantitative research (1998—2008) in this area, utilizing a systematic approach targeting studies on family caregivers, home settings, and an identified palliative phase of care (n = 129). Methodological challenges were identified, including: small, non-random, convenience samples; reliance on descriptive and bivariate analyses; and a dearth of longitudinal research. Robust evidence regarding causal relationships between predictor variables and carer outcomes is lacking. Findings suggest the need for knowledge regarding: family caregiving for patients with non-malignant terminal conditions; whether needs and outcomes differ between family caregivers at the end of life and comparison groups; and caregiver outcomes in bereavement. Clear definitions of ‘family caregiving’, ‘end of life’, and ‘needs’ are required as well as greater application and testing of theoretical and conceptual explanations.

Supporting lay carers in end of life care: current gaps and future priorities

Informal carers are central to the achievement of end of life care and death at home and to policy aims of enabling patient choice towards end of life. They provide a substantial, yet hidden contribution to our economy. This entails considerable personal cost to carers, and it is recognised that their needs should be assessed and addressed. However, we lack good research evidence on how best to do this. The present position paper gives an overview of the current state of carer research, its gaps and weaknesses, and outlines future priorities. It draws on a comprehensive review of the carer literature and a consensus meeting by experts in the field. Carers’ needs and adverse effects of caregiving have been extensively researched. In contrast, we lack both empirical longitudinal research and conceptual models to establish how adverse effects may be prevented through appropriate support. A reactive, “repair” approach predominates. Evaluations of existing interventions provide limited information, due to limited rigour in design and the wide variety in types of intervention evaluated. Further research is required into the particular challenges that the dual role of carers as both clients and providers pose for intervention design, suggesting a need for future emphasis on positive aspects of caregiving and empowerment. We require more longitudinal research and user involvement to aid development of interventions and more experimental and quasi-experimental research to evaluate them, with better utilisation of the natural experiments afforded by intra- and international differences in service provision.

Would people with Parkinson's disease benefit from palliative care?

Parkinsons disease (PD) is a chronic, progressive, degenerative disorder of the nervous system, causing substantial morbidity and has the capacity to shorten life. People with PD and their families can find the disease devastating. Nevertheless, this population of patients is not usually considered a group to be supported by palliative care specialists. But the nature of the illness and the challenges of managing its many physical and psychological effects raises questions about the potential benefits of a palliative care approach. The purpose of this project was to describe the experience of PD and consider the relevance of palliative care for this population. Semi-structured interviews were conducted with eight people with PD, 21 family caregivers and six health professionals. Five themes were developed from the data analysis: (1) emotional impact of diagnosis; (2) staying connected; (3) enduring financial hardship; (4) managing physical challenges; and (5) finding help for advanced stages. These data revealed that people with PD and family caregivers are confronted with similar issues to people with typical palliative care diagnoses, such as advanced cancer, and that a palliative approach may be helpful in the care of people with PD and their families.

Ensuring content validity in instrument development: challenges and innovative approaches

Abstract The challenges of developing new and valid instruments specific for use in nursing research and practice can be complex and varied. In this paper we identify a number of innovative approaches for achieving content validity based on our instrument development work. These approaches include ways of identifying the conceptual domain, the role of literature reviews and key experts, processes used to confirm content validity and clarity of content, feasibility of the validity process and exploration of pertinent ethical issues. The review of key issues covered here may provide guidance for nurses and researchers in developing sound and content valid instruments.

Development and Testing of a Modified Version of the Brief Pain Inventory for Use in Residential Aged Care Facilities

OBJECTIVES: A two‐phase study was conducted to refine a version of Cleelands Brief Pain Inventory (BPI, Short Form) for use in residential aged care facilities (RACFs).

Dementia Knowledge Assessment Scale: Development and Preliminary Psychometric Properties

To develop a reliable and valid dementia knowledge scale to address limitations of existing measures, support knowledge evaluation in diverse populations, and inform educational intervention development.

Dementia Knowledge Assessment Tool Version Two: development of a tool to inform preparation for care planning and delivery in families and care staff.

Care for the person with dementia requires understanding of the person’s perspective and preferences, integrated with knowledge of dementia’s trajectory and appropriate care. Version One of the Dementia Knowledge Assessment Tool addressed such knowledge in care workers; Version Two is for families as well as staff. Content validity was established during development. Revisions addressed clarity, time for completion, and reliability. When 671 staff completed Version One before an education intervention, internal consistency reliability estimates exceeded 0.70. Validity was supported by higher scores in professional versus nonprofessional staff and following the education. Version Two was used with 34 family carers and 70 staff members. Internal consistency reliability (Cronbach’s alpha coefficient) was promising (0.79, both groups). Completion was within 15 minutes. Median correct responses (from 21) were 14 for families (range 4–20) and 16 for the staff (range 3–21). Eighteen staff members (26%) and two family carers (6%) reported substantive dementia education. Inclusion of the person with dementia in care planning is often limited because of a late diagnosis and the progressive impacts of the condition. Establishing a shared staff–family understanding of the dementia trajectory and care strategies likely to be helpful is therefore critical to embarking upon the development and implementation of collaborative long term and end-of-life care plans. Version Two can help establish needs for, and outcomes of, education programs and informational resources in a way that is feasible, minimises burden, and facilitates comparisons across family and staff carer groups.

Developing recommendations for implementing the Australian Pain Society's pain management strategies in residential aged care

Objective:  This study aimed to develop recommendations and a related implementation resource ‘toolkit’ to facilitate implementation of pain management strategies in Australian Residential Aged Care Facilities (RACFs).

What should we know about dementia in the 21st Century? A Delphi consensus study

BackgroundEscalating numbers of people are experiencing dementia in many countries. With increasing consumer needs, there is anticipated growth in the numbers of people providing diagnostic evaluations, treatments, and care. Ensuring a consistent and contemporary understanding of dementia across all of these groups has become a critical issue. This study aimed to reach consensus among dementia experts from English speaking countries regarding essential and contemporary knowledge about dementia.MethodsAn online Delphi study was conducted to examine expert opinion concerning dementia knowledge with three rounds of data collection. A sample of dementia experts was selected by a panel of Australian experts, including a geriatrician and three professors of aged care. Purposive selection was initially undertaken with the sample expanded through snowballing. Dementia experts (N = 19) included geriatricians, psychologists, psychiatrists, neuroscientists, dementia advocates, and nurse academics from the United Kingdom, United States, and Australia. In the first round, these participants provided open-ended responses to questions determining what comprised essential knowledge about dementia. In the second round, responses were summarised into 66 discrete statements that participants rated on the basis of importance. In the third round, a rank-ordered list of the 66 statements and a group median were provided and participants rated the statements again. The degree of consensus regarding importance ratings was determined by assessing median, interquartile range, and proportion of experts scoring above predetermined thresholds. Correlation scores were calculated for each statement after the final round to identify changes in statement scores.ResultsThe Delphi experts identified 36 statements about dementia that they considered essential to understanding the condition. Statements about care for a person experiencing dementia and their care giver represented the largest response category. Other statements, for which full or very high consensus was reached, related to dementia characteristics, symptoms and progression, diagnosis and assessment, and treatment and prevention.ConclusionsThese results summarise knowledge of dementia that is considered essential across expert representatives of key stakeholder groups from three countries. This information has implications for the delivery of care to people with the condition and the development of dementia education programs.

Evaluating the Feasibility and Effect of Using a Hospital-Wide Coordinated Approach to Introduce Evidence-Based Changes for Pain Management

This action research project explored the feasibility and effect of implementing a hospital-wide coordinated approach to improve the management of pain. The project used a previously developed model to introduce three evidence-based changes in pain management. Part of this model included the introduction of 30 pain resource nurses (PRNs) to act as clinical champions for pain at a local level. Both quantitative and qualitative measures were used to assess the feasibility and effect of the changes introduced. Quantitative data were gathered through a hospital-wide document review and assessment of the knowledge and attitude of the PRNs at two time points: time 1 before the introduction of the PRNs and time 2 near completion of the project (11 months later). A statistically significant improvement in the documentation of pain scores on admission and each nursing shift was apparent. However, no difference was found in the percentage of patients who had been prescribed opioids for regular pain relief that had also been prescribed and dispensed a laxative/aperient. Neither were any statistically significant decreases in patient pain scores observed. An assessment of the knowledge and attitudes of the PRNs showed an improvement from time 1 to time 2 that was statistically significant. The qualitative data revealed that despite the barriers encountered, the role was satisfying for the PRNs and valued by other hospital staff. Overall, the results revealed that the new model of change incorporating PRNs was a useful and effective method for introducing and sustaining evidence-based organizational change.