Micro-meso-macro practice tensions in using patient-reported outcome and experience measures in hospital palliative care

This article applies a micro-meso-macro analytical framework to understand clinicians’ experiences and perspectives of using patient-reported outcome and experience measures (PROMs and PREMs) in routine hospital-based palliative care. We structure our discussion through qualitative analysis of a design and implementation project for using an electronic tablet-based tool among hospital-based palliative clinicians to assess patients’ and their family caregivers’ quality of life concerns and experiences of care. Our analysis identified three categories of practice tensions shaping clinicians’ use of PROMs and PREMs in routine care: tensions surrounding implementation, tensions in standardization and quantification, and tensions that arose from scope of practice concerns. Our findings highlight that clinicians necessarily work within the confluence of multiple system priorities, that navigating these priorities can result in irreducible practice tensions, and that awareness of these tensions is a critical consideration when integrating PROMs and PREMs into routine practice

Cultural influences on palliative family caregiving: service recommendations specific to the Vietnamese in Canada

10.1186/s13104-015-1252-3BMC Research Notes8128

Design and introduction of a quality of life assessment and practice support system: perspectives from palliative care settings

Background: Quality of life (QOL) assessment instruments, including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), are increasingly promoted as a means of enabling clinicians to enhance person-centered care. However, integration of these instruments into palliative care clinical practice has been inconsistent. This study focused on the design of an electronic Quality of Life and Practice Support System (QPSS) prototype and its initial use in palliative inpatient and home care settings. Our objectives were to ascertain desired features of a QPSS prototype and the experiences of clinicians, patients, and family caregivers in regard to the initial introduction of a QPSS in palliative care, interpreting them in context. Methods: We applied an integrated knowledge translation approach in two stages by engaging a total of 71 clinicians, 18 patients, and 17 family caregivers in palliative inpatient and home care settings. Data for Stage I were collected via 12 focus groups with clinicians to ascertain desirable features of a QPSS. Stage II involved 5 focus groups and 24 interviews with clinicians and 35 interviews with patients or family caregivers during initial implementation of a QPSS. The focus groups and interviews were recorded, transcribed, and analyzed using the qualitative methodology of interpretive description. Results: Desirable features focused on hardware (lightweight, durable, and easy to disinfect), software (simple, user-friendly interface, multi-linguistic, integration with e-health systems), and choice of assessment instruments that would facilitate a holistic assessment. Although patient and family caregiver participants were predominantly enthusiastic, clinicians expressed a mixture of enthusiasm, receptivity, and concern regarding the use of a QPSS. The analyses revealed important contextual considerations, including: (a) logistical, technical, and aesthetic considerations regarding the QPSS as a technology, (b) diversity in knowledge, skills, and attitudes of clinicians, patients, and family caregivers regarding the integration of electronic QOL assessments in care, and (c) the need to understand organizational context and priorities in using QOL assessment data. Conclusion: The process of designing and integrating a QPSS in palliative care for patients with life-limiting conditions and their family caregivers is complex and requires extensive consultation with clinicians, administrators, patients, and family caregivers to inform successful implementation

Designing information for families caring for people with dementia

A health communication project, to develop information to support families caring for people with dementia, is described. Close collaboration of designers with carers – ‘experts by experience’ – and clinicians and other professionals – ‘experts by training’ – was used. Carer consultation led to a printed (rather than digital) handbook. An iterative process of carer and clinician consultation and design shaped the material form of the handbook. Carers’ needs for different kinds of information were met by a modular approach, and tailored module design. Evaluation following distribution of the handbook suggested it improved carers’ understanding of dementia significantly compared to the information from diverse sources supplied previously. It did not, however, influence people’s confidence in their ability to care, which appeared to be supported better through carer education courses. The specific contribution of information design and its potential for delivering return on investment are discussed

Approaches to capturing the financial cost of family care-giving within a palliative care context: a systematic review.

The economic burden faced by family caregivers of people at the end of life is well recognised. Financial burden has a significant impact on the provision of family care-giving in the community setting, but has seen limited research attention. A systematic review with realist review synthesis and thematic analysis was undertaken to identify literature relating to the financial costs and impact of family care-giving at the end of life. This paper reports findings relating to previously developed approaches which capture the financial costs and implications of caring for family members receiving palliative/end-of-life care. Seven electronic databases were searched from inception to April 2012, for original research studies relating to the financial impact of care-giving at the end of life. Studies were independently screened to identify those which met the study inclusion criteria, and the methodological quality of included studies was appraised using realist review criteria of relevance and rigour. A descriptive thematic approach was used to synthesise data. Twelve articles met the inclusion criteria for the review. Various approaches to capturing data on the financial costs of care-giving at the end of life were noted; however, no single tool was identified with the sole purpose of exploring these costs. The majority of approaches used structured questionnaires and were administered by personal interview, with most studies using longitudinal designs. Calculation of costs was most often based on recall by patients and family caregivers, in some studies combined with objective measures of resource use. While the studies in this review provide useful data on approaches to capturing costs of care-giving, more work is needed to develop methods which accurately and sensitively capture the financial costs of caring at the end of life. Methodological considerations include study design and method of administration, contextual and cultural relevance, and accuracy of cost estimates

STRESS, DEPRESSION AND BURNOUT AMONG HOSPITAL PHYSICIANS IN RIJEKA, CROATIA

Background: Six years of recent ongoing economic and structural crisis in Croatia have brought to a significant decrease of socioeconomic standard in our country, and had an important impact on the health care system. In this background we examined the prevalence of depression and burnout and their association with work stressors. Subjects and methods: Cross sectional survey was conducted with self reported questionnaires in 459 hospital physicians in Rijeka, Croatia. Physicians were divided into three groups: surgical, nonsurgical and diagnostic group. Socio-demographic and work-related characteristics questionnaire, Occupational Stress Assessment Questionnaire (OSAQ), Maslach Burnout Inventory- Human Services Survey (MBI-HSS) and Beck Depression Inventory II (BDI-II) were used. Sperman correlation and logistic regression were calculated to rank association between stressors at work with depression and burnout syndrome. Results: Response rate was 62.3%, (286/459). Every fifth doctor experienced all examined stressors in the workplace as stressful. The prevalence of moderate and severe depression was 12.2%. High levels of emotional exhaustion were 43.6%, depersonalization 33.5%, and lack of personal accomplishment 49.1%. There was no statistical difference in surgical, nonsurgical and diagnostic groups in depression and all domains of MBI-HSS. Almost all stressors were correlated with depression and burnout syndrome. Most of the perceived stressors were significant predictors of burnout syndrome and depression. Conclusions: High levels of burnout domain compared to overall results from similar studies from other countries, placed the results in our sample on the higher end of the range, while results for depression after adjustment with lower cutoff point would be similar to those usually found in research literature. Our study showed that burnout is highly prevalent among Croatian physicians. Target interventions at the workplace should be considered as one of the strategies to reduce negative impact of work stress on physicians’ mental health

Risk Behaviors for Getting HIV Infection among the Croatian Men Who Have Sex with Men in 2007

This survey was conducted with the aim of obtaining the information on the sexual risk behavior of Croatian men who have sex with men (MSM) two years after the first research. There was total of 820 respondents recruited at seven frequent meeting places of Croatian MSM in Zagreb and Rijeka, as well as one gay-oriented web-site. The overall response rate was 17.6% which is 1.4 percentage point less than it was two years ago. The rate of condom use during last anal intercourse was 53.2% and 69% of those who used a lubricant had chosen a correct water-based product which is increase of 15% comparing to the last research. Only 27% of those who had also had sex with women (MSM/MSW) during last 12 months regularly used protection. The results of this research suggest that there are trends in declining of some risk behaviors among Croatian MSM but there is a lot

Internationally transferable policy solutions for supporting employed end of life family caregivers: Canadian compassionate care benefit

Background Policy and employment legislation are key for supporting employed end of life family caregivers. The Canadian Compassionate Care Benefit is one example of a benefit which supports employed family carers, but the potential transferability of the Benefit to other countries has not been explored. Aim The aim of this study was to explore the implementation and impact of the Canadian Compassionate Care Benefit and assess its potential transferability to comparable countries. Methods A multi-method design was used, incorporating an integrative review of published literature and qualitative interviews with stakeholders who had expertise with the Compassionate Care Benefit, from across Canada. The findings from the two phases were analysed separately and were integrated at the stage of interpretation. Results Fourteen interviews were conducted with stakeholders, and sixteen relevant articles were identified from the integrative review. Whilst the CCB was viewed as an important support for carers, problems were highlighted which would need to be addressed to improve access and ensure equity in other countries or settings. The results highlight the importance of a receptive socio-political landscape in driving policy change, noting political incentives and individual champions as key for negotiating policy prioritization. The lack of evidence on cost-effectiveness may impede international transferability or policy expansion. Conclusion Whilst the Compassionate Care Benefit has been conceived and implemented specifically for the Canadian context, there may be potential for it to be adapted for other comparable countries. Further research on the Compassionate Care Benefit, particularly around cost-effectiveness, would support international policy transfer