Kelli Stajduhar

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.

A systematic review of instruments related to family caregivers of palliative care patients

Support for family caregivers is a core function of palliative care. However, there is a lack of consistency in the way needs are assessed, few longitudinal studies to examine the impact of caregiving, and a dearth of evidence-based interventions. In order to help redress this situation, identification of suitable instruments to examine the caregiving experience and the effectiveness of interventions is required. A systematic literature review was undertaken incorporating representatives of the European Association for Palliative Care’s International Palliative Care Family Caregiver Research Collaboration and Family Carer Taskforce. The aim of the review was to identify articles that described the use of instruments administered to family caregivers of palliative care patients (pre and post-bereavement). Fourteen of the 62 instruments targeted satisfaction with service delivery and less than half were developed specifically for the palliative care context. In approximately 25% of articles psychometric data were not reported. Where psychometric results were reported, validity data were reported in less than half (42%) of these cases. While a considerable variety of instruments have been administered to family caregivers, the validity of some of these requires further consideration. We recommend that others be judicious before developing new instruments for this population.

Short Report: Preferences for location of death of seriously ill hospitalized patients: perspectives from Canadian patients and their family caregivers

Previous studies involving palliative patients suggest a preference for dying at home. The purpose of this paper is to examine, prospectively, patient and family caregiver preferences for, and congruence with, location of death for hospitalized patients with cancer and end-stage medical conditions. Questionnaires were administered to 440 eligible in-patients and 160 family caregivers in five hospitals across Canada. This paper reports results of 138 patient/family caregiver dyads who answered a question about preference for location of death. The results suggest that only half of all patients and family caregivers report a preference for a home death. Furthermore, half of the patient/family caregiver dyads disagree on preferred location of death. If one of the primary goals of end of life care is to enhance the quality of life of dying patients and their family caregivers, policies directed towards ensuring that patients die in their location of choice ought to be a priority and resources should be allocated to promote the development of excellent care, not only in the home, but also within our institutional settings. Palliative Medicine 2008; 22: 85—88

Patient perceptions of helpful communication in the context of advanced cancer

AIMS AND OBJECTIVES Based on a secondary analysis of data from a large qualitative study on cancer care communication, we address the question: what do patients with advanced cancer identify as helpful in their communication encounters with health care providers? BACKGROUND Communication is of critical importance to the care of patients with advanced cancer. A better understanding of what such patients identify as helpful in their communication encounters with nurses and other health care providers seems critical to creating evidence-informed recommendations for best practices. DESIGN Secondary analysis of qualitative interview data. METHODS Data from 18 participants interviewed individually and 16 focus group participants, with advanced cancer in the palliative phase of care. Interpretive description methodology informed data collection and analysis. RESULTS Findings suggest four key elements are critically important to consider in communications with patients in an advanced or palliative phase - respecting the importance of time, demonstrating caring, acknowledging fear and balancing hope and honesty in the provision of information. CONCLUSIONS Communication is an important element in the provision of advanced cancer care. RELEVANCE TO CLINICAL PRACTICE Findings emphasise the complex meanings inherent in cancer care communication and identify central themes that are fundamental to effective cancer care communication.

The Impact of Work Interferences on Family Caregiver Outcomes

Most research into caregiver employment and outcomes conceives of employment as a dichotomous variable—employed or not. This study examines the relationship between work interferences and caregiver burden, well-being, and self-esteem within a modified stress process model. Regression models are employed using a population-based random sample of caregivers. Employment status effects on outcomes for the total sample are estimated, followed by estimations of the effects of work interferences on the same outcomes for the employed subsample. Employment status is unrelated to outcomes in the total sample. In the employed subsample, a 13-item work interferences scale is related to burden but unrelated to well-being and self-esteem. Of the 13 items, only “performance at work was affected because of caring for a care recipient” is associated with all three caregiver outcomes. These findings suggest that subjective assessment of work interferences may play a more important role than does employment status.

Family caregiver learning—how family caregivers learn to provide care at the end of life: A qualitative secondary analysis of four datasets

Background: Family caregivers are assuming growing responsibilities in providing care to dying family members. Supporting them is fundamental to ensure quality end-of-life care and to buffer potentially negative outcomes, although family caregivers frequently acknowledge a deficiency of information, knowledge, and skills necessary to assume the tasks involved in this care. Aim: The aim of this inquiry was to explore how family caregivers describe learning to provide care to palliative patients. Design: Secondary analysis of data from four qualitative studies (n = 156) with family caregivers of dying people. Data sources: Data included qualitative interviews with 156 family caregivers of dying people. Results: Family caregivers learn through the following processes: trial and error, actively seeking needed information and guidance, applying knowledge and skills from previous experience, and reflecting on their current experiences. Caregivers generally preferred and appreciated a supported or guided learning process that involved being shown or told by others, usually learning reactively after a crisis. Conclusions: Findings inform areas for future research to identify effective, individualized programs and interventions to support positive learning experiences for family caregivers of dying people.

Patient Real-Time and 12-Month Retrospective Perceptions of Difficult Communications in the Cancer Diagnostic Period

Communication is a notoriously complex challenge in the cancer care context. Our program of research involves exploration of patient—provider communications across the cancer trajectory from the patient perspective.Toward this end, we have been following a cohort of 60 cancer patients, representing a range of tumor sites, from immediately after diagnosis through to recovery, chronic, or advanced disease. Drawing on interpretive description analytic techniques, we documented patterns and themes related to various components of the cancer journey. In this article, we report on findings pertaining to poor communication during the initial diagnostic period, as described by patients at the time of diagnosis and 1 year later.These findings illuminate the dynamics of communication problems during that complex period, and depict the mechanisms by which patients sought to confront these challenges to optimize their cancer care experience. On the basis of these findings, considered in the context of the body of available evidence, suggestions are proposed as to appropriate directions for system-level solutions to the complex communication challenges within cancer care.

Time-related communication skills from the cancer patient perspective

Objective: Although it is well recognized that skilled communication is an essential element of effective cancer care, lack of time to communicate is often cited as an explanation for the ongoing cancer care communications problems patients report. In this study, we sought to answer the question: How do cancer patients describe and explain the effects of health care communication upon their experience of time?

Patient perceptions of communications on the threshold of cancer survivorship: implications for provider responses

IntroductionAlthough high quality professional–patient communication is recognized as fundamental to effective cancer care, less attention has been paid to developing an evidence basis for communications surrounding the stage of the cancer journey when primary cancer treatment concludes, management responsibilities shift from oncology specialist services into the generalist care domain, and the patient transitions beyond patienthood and into survivorship.MethodsUsing applied qualitative methodology, we analyzed a database of multiple interviews with 14 Canadian cancer patients from a larger study of changing communication needs and preferences across the cancer trajectory. Through constant comparative analysis, we generated a thematic summary of interpretive understandings from the patient perspective of communication patterns across the transition from active treatment to survivorship.ResultsThe accounts illuminate the complexities of the communication environment in which the transition to survivorship occurs. Communication gaps and misinterpretations by clinicians contributed to the confusion, insecurity, vulnerability, loss, and abandonment associated with this transition when they failed to accurately and sensitively respond to individual conditions.Discussion/conclusionsDespite increasing recognition of the importance of this transition, communication gaps occur in relation to attending to cues, giving prior warning, avoiding avoidance, sensitivity to context, managing relationships, surfacing anxieties, and clarifying roles and responsibilities. These findings expand upon previous reports to explain mechanisms whereby interactions between clinicians and patients may significantly shape the transitional experience and set the stage for survivorship.Implications for cancer survivorsFrom the perspective of cancer survivors, the transition beyond initial treatment warrants well-informed anticipatory and supportive healthcare communications.