Abstract
Background:
Limited research exists to inform a music therapist’s supervision story from their pre-professional training to their practice as a professional. Evidence is needed to understand ...the complex nature of supervision experiences and their impact on professional practice.
Objective:
This qualitative study explored the supervisory experiences of Australian-based Registered Music Therapists, according to the: 1) themes that characterize their experiences, 2) influences of the supervisor’s professional background, 3) outcomes of supervision, and 4) roles of the employer, the professional music therapy association, and the university in supervision standards and practice.
Methods:
Seven professionals were interviewed for this study. Five stages of narrative analysis were used to create their supervision stories: a life course graph, narrative psychological analysis, component story framework and narrative analysis, analysis of narratives, and final integration of the seven narrative summaries.
Results:
Findings revealed that supervision practice is influenced by a supervisee’s personal and professional needs. A range of supervision models or approaches is recommended, including the access of supervisors from different professional backgrounds to support each stage of learning and development. A quality supervisory experience facilitates shifts in awareness and insight, which results in improved or increased skills, confidence, and accountability of practice. Participants’ concern about stakeholders included a limited understanding of the role of the supervisor, a lack of clarity about accountability of supervisory practice, and minimal guidelines, which monitor professional competencies.
Conclusions:
The benefits of supervision in music therapy depend on the quality of the supervision provided, and clarity about the roles of those involved. Research and guidelines are recommended to target these areas.
Background:
Recruitment challenges contribute to the paucity of palliative care research with advanced chronic heart failure patients.
Aim:
To describe the challenges and outline strategies of ...recruiting advanced chronic heart failure patients.
Design:
A feasibility study using a pre–post uncontrolled design.
Setting:
Advanced chronic heart failure patients were recruited at two nurse-led chronic heart failure disease management clinics in Ireland
Results:
Of 372 patients screened, 81 were approached, 38 were recruited (46.9% conversion to consent) and 25 completed the intervention. To identify the desired population, a modified version of the European Society of Cardiology definition was used together with modified New York Heart Association inclusion criteria to address inter-study site New York Heart Association classification subjectivity. These modifications substantially increased median monthly numbers of eligible patients approached (from 8 to 20) and median monthly numbers recruited (from 4 to 9). Analysis using a mortality risk calculator demonstrated that recruited patients had a median 1-year mortality risk of 22.7 and confirmed that the modified eligibility criteria successfully identified the population of interest. A statistically significant difference in New York Heart Association classification was found in recruited patients between study sites, but no statistically significant difference was found in selected clinical parameters between these patients.
Conclusion:
Clinically relevant modifications to the European Society of Cardiology definition and strategies to address New York Heart Association subjectivity may help to improve advanced chronic heart failure patient recruitment in clinical settings, thereby helping to address the paucity of palliative care research this population.
Full text
Available for:
NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
End-of-life care research across Africa is under-resourced and under-developed. A central issue in research in end-of-life care is the measurement of effects and outcomes of care on patients and ...families. Little is known about the experiences of health professionals' selection and implementation of outcome measures (OM) in clinical care, research, audit, or teaching in Africa.
An online survey was undertaken of those using outcome measures across the region, as part of the PRISMA project. A questionnaire addressing the use of OMs was developed for a similar survey in Europe and adapted for Africa. Participants were sampled through the contacts database of APCA. Invitation emails were sent out in January 2010 and reminders in February 2010.
168/301 invited contacts (56%) from 24 countries responded, with 78 respondents having previously used OM (65% in clinical practice, 12% in research and 23% for both). Main reasons for not using OM were a lack of guidance/training on using and analysing OM, with 49% saying that they would use the tools if this was provided. 40% of those using OM in clinical practice used POS, and 80% used them to assess, evaluate and monitor change. The POS was also the main tool used in research, with the principle criteria for use being validation in Africa, access to the tool and time needed to complete it. Challenges to the use of tools were shortage of time and resources, lack of guidance and training for the professionals, poor health status of patients and complexity of OM. Researchers also have problems analysing OM data. The APCA African POS was the most common version of the POS used, and was reported as a valuable tool for measuring outcomes. Respondents indicated the ideal outcome tool should be short, multi-dimensional and easy to use.
This was the first survey on professionals' views on OM in Africa. It showed that the APCA African POS was the most frequently OM used. Training and support are needed to help professionals utilise OM in palliative care, and OMs have an ongoing and important role in palliative care in Africa.
Full text
Available for:
IZUM, KILJ, NUK, PILJ, PNG, SAZU, UL, UM, UPUK
Agreed terminology used in systematic reviews of the effectiveness of specialist palliative care ((S)PC)) is required to ensure consistency and usability and to help guide future similar reviews and ...the design of clinical trials. During the preparation of protocols for two separate systematic reviews that aimed to assess the effectiveness of SPC, two international research groups collaborated to ensure a high degree of methodological consensus and clarity between reviews. During the collaboration, it became evident that close attention is needed to (i) avoid ambiguity in the definition of advanced illness, (ii) capture the specialist expertise and prerequisites for SPC interventions, and (iii) the multi-professional and multi-dimensional nature of PC. Also, (iv) the exclusion of relevant studies or (v) impracticality of meta-analyses of the obtained data must be avoided. The aim of this article is to present the core issues of the discussion to help future research groups to easily identify potential pitfalls and methodologic necessities.
Core issues that arose from the discussion are presented along the research questions according to the PICO process: Population (P): Authors should refer to existing definitions of PC to ensure that, even if the review aims to investigate specific patients (e.g. cancer patients), it is important to make clear that PC is applicable for all life-limiting diseases and not limited to end-of-life or cancer. Intervention (I): PC is a core responsibility of all disciplines (general PC). In contrast, SPC demands further training and expertise. Therefore, core tenets of SPC interventions are that they are (i) multi-professional and (ii) aim at the multi-dimensional nature of suffering. Outcome (O): The main goal of PC is multi-dimensional (quality of life, suffering or distress). Yet, meta-analysis may be complex to conduct due to the heterogeneity of the multi-dimensional outcomes. Therefore, the assessment of uni-dimensional measures such as pain can also provide clinically relevant information that is easier to obtain.
Recommendations for future systematic reviews and clinical trials include: (i) Appraise the experience of other research groups who have produced similar systematic reviews or clinical trials. (ii) Include studies that meet the multi-professional and multi-dimensional nature of PC and the specialization requirements for SPC. (iii) Thoroughly weigh relevance and practicability of the primary outcome. Multi-dimensional tools such as quality-of-life questionnaires assess the different dimensions of suffering (the true scope of PC), but uni-dimensional measures such as pain are easier to assess in meta-analyses.
Full text
Available for:
IZUM, KILJ, NUK, PILJ, PNG, SAZU, UL, UM, UPUK
Abstract Background Emergency department visits towards the end of life by people with cancer are increasing over time. This increase has occurred despite evidence of an association with poor patient ...outcomes, the majority of patients preferring home-based care, and significant overcrowding and capacity concerns for many emergency departments. We aimed to explore factors associated with emergency department attendance by cancer patients in the last month of life. Methods We searched Medline, Embase, CINAHL, PsychINFO, and the Cochrane Library from inception to February, 2014, for studies investigating emergency department attendances by adult cancer patients (≥18 years) towards the end of life. No time or language limitations were applied. We performed meta-analysis of factors using a random-effects model, with results expressed as odds ratios (OR) for emergency department attendance. Sensitivity analysis explored heterogeneity. Findings 30 studies were identified, reporting three demographic, five clinical, and 13 environmental factors; they included data from five countries and 1 181 842 patients. An increased likelihood of emergency department attendance was found for men versus women (OR 1·24, 95% CI 1·19–1·29), black versus white race (1·45, 1·40–1·50), patients with lung cancer versus other cancers (1·17, 1·10–1·23), and those of lowest versus highest socioeconomic status (1·15, 1·10–1·19). Patients receiving palliative care were less likely than those not receiving palliative care to attend the emergency department in the last month of life (OR 0·43, 95% CI 0·36–0·51). Interpretation We have identified demographic (men, black race), clinical (lung cancer), and environmental (low socioeconomic status, no palliative care) factors associated with an increased risk of emergency department attendance. These findings could be used to develop screening interventions and assist policy makers in directing limited resources. Future studies should also investigate previously neglected areas of research, including psychosocial factors, and the emergency care preferences of patients and caregivers. Funding LH is a PhD clinical training fellow and funded through project BuildCARE which is supported by Cicely Saunders International and The Atlantic Philanthropies, and led by King's College London, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, UK.
Full text
Available for:
GEOZS, IJS, IMTLJ, KILJ, KISLJ, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UL, UM, UPCLJ, UPUK
To evaluate the views of clinicians and researchers on their use of outcome measures and which questions are most important in palliative and end-of-life care.
Online survey of professionals working ...in clinical care, clinical audit and research in palliative care across Europe and Africa identified through national and international associations and databases. Questions focused on measures used, reasons and which questions were important in two commonly used multidimensional measures, the Palliative care Outcome Scale (POS) and the Support Team Assessment Schedule (STAS).
The overall completion rate was 59% (392/663). Three outcome measures were commonly used by over one in four respondents for clinical practice and over one in 10 for research: the Karnofsky Performance Scale (KPS), followed by the Edmonton Symptom Assessment Scale (ESAS) and the POS. Measures were used twice as often in clinical practice as in research. The main uses were similar: assessing patients' symptoms/needs (88% and 85% of POS and STAS users, respectively), monitoring changes (62%, 58%), evaluating care (61%, 48%) and assessing family needs (59%, 60%). Respondents rated the most important questions as pain, symptoms, emotional and family aspects. There were no differences in the choice of the most important questions between doctors and nurses or between researchers and clinicians.
In palliative care, outcome measures often used in clinical practice are also often used in research. Questions relating to pain, symptoms, emotional needs and family concerns are consistently considered the most useful and important in palliative patient reported outcome measures (PROMs).
Abstract Within aging European populations, the need to progress end-of-life and palliative care policy is becoming increasingly important. PRISMA, a European Commission-funded project, aimed to ...identify and coordinate research priorities, measurement, and practice in end-of-life care for Europe. PRISMA conducted a three-year multidisciplinary program to advance science and policy and to enhance coordination of cross-national activity. The final PRISMA symposium was convened to disseminate our new knowledge and activities and was held for European Union-level and national-level policy makers, policy influencers, and funders. Nearly 100 international invited delegates participated in the symposium, with the understanding that European research is aided by international partnerships and the free exchange of ideas and resources across states. The series of invited speakers, roundtables, and floor discussions underlined the necessity for clinical and public priorities to inform holistic outcome measurement research supported by government action informed by policy. Sustainable leadership, clear terminology and pan-European collaborative networks, and protected research funding designated for end-of-life or palliative care were identified as essential to progress end-of-life and palliative care research and innovation in Europe. An agreed set of outcome measures for end-of-life and palliative care that builds on previous pan-European projects is fundamental to a cross-national program of development in order to advance research and innovation within Europe.
Full text
Available for:
GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public ...views regarding end-of-life care in the face of serious illness.
Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, The Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes.
Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support.
Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery.
Full text
Available for:
NUK, OILJ, UL, UM, UPUK, VSZLJ
Although national findings regarding people's end-of-life care (EoLC) preferences and priorities are available within Europe, a lack of research coordination between countries has meant that ...cross-national understandings of EoLC remain unknown.
To (1) identify English and German understandings of EoLC within the context of an EoLC survey, and (2) to synthesise these understandings to aid interpretation of results from a cross-national survey.
An inductive and interpretive two-phased sequential design involving (1) qualitative analysis of cognitive interview data from 15 English and 15 German respondents to develop country-related categories, and (2) qualitative synthesis to identify a conceptually coherent understanding of EoLC.
Open and axial coding resulted in six English and six German categories. Commonalities included (a) the importance of social and relational dimensions, (b) dynamic decision making comprising uncertainty, (c) a valuing of life's quality and quantity, and (d) expectations for holistic care involving autonomy, choice, and timely information from trusted professionals. Differences involved attention to practical matters, and thoughts about prolongation of life, preferred place of death, and the role of media and context. Synthesis resulted in four concepts with underlying coherence: expectations of a high standard of EoLC involving autonomy, choice, and context; evolving decision making amid anticipated change; thoughts about living and existing; and worldviews shaping EoLC preferences in real and hypothetical scenarios.
Individual and country-related diversity must be remembered when quantifying EoLC understandings. Inductive-interpretive analysis of cognitive interview data aids interpretation of survey findings. Cross-national research coordination and qualitative synthesis assists EoLC in Europe.
PDF
