Dataset Information

Experiences of patients, family and professional caregivers with Integrated Palliative Care in Europe: protocol for an international, multicenter, prospective, mixed method study.

ABSTRACT:

Background

The number of people living with advanced cancer and chronic disease has increased worldwide. Many of these patients could benefit from palliative care, focusing on optimising the quality of life of patients and their families facing problems resulting from life-threatening diseases. However, fragmentation and discontinuity of palliative care services often result in suboptimal palliative care. In order to overcome these problems, models using an integrated care approach are increasingly advocated in palliative care services. Although several models and definitions of Integrated Palliative Care (IPC) have been developed, the effects of integrated care are still under-investigated. Knowledge of the key components that constitute successful palliative care integration is still lacking. This mixed methods study will examine the experiences of patients, family caregivers and professional caregivers in order to provide insight into the mechanisms that constitute successful palliative care integration.

Methods/design

Prospective multiple embedded case study. Three to five integrated palliative care initiatives will be selected in Belgium, Germany, Hungary, The Netherlands and the United Kingdom. Data collection will involve Social Network Analysis (SNA), a patient diary, semi-structured interviews, and questionnaires: Palliative care Outcome Scale (POS), Canhelp Lite, Caregiver Reaction Assessment (CRA). Patients and family caregivers will be followed in 4 consecutive contact moments over 3 months. The diary will be kept weekly by patients. One focus group per initiative will be conducted with professional caregivers. Interviews and focus groups will be tape recorded, transcribed and qualitatively analysed using NVivo 10. SPSS Statistics 20 will be used for statistical analysis.

Discussion

This study will provide valuable knowledge about barriers, opportunities and good practices in palliative care integration in the selected initiatives across countries. This knowledge can be used in the benchmark of integrated palliative care initiatives across Europe. It will add to the scientific evidence for IPC services internationally and will contribute to improvements in the quality of care and the quality of living and dying of severely ill patients and their relatives in Europe.

SUBMITTER: van der Eerden M

PROVIDER: S-EPMC4254197 | biostudies-literature | 2014

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Experiences of patients, family and professional caregivers with Integrated Palliative Care in Europe: protocol for an international, multicenter, prospective, mixed method study.

van der Eerden Marlieke M Csikos Agnes A Busa Csilla C Hughes Sean S Radbruch Lukas L Menten Johan J Hasselaar Jeroen J Groot Marieke M

BMC palliative care 20141121 1

<h4>Background</h4>The number of people living with advanced cancer and chronic disease has increased worldwide. Many of these patients could benefit from palliative care, focusing on optimising the quality of life of patients and their families facing problems resulting from life-threatening diseases. However, fragmentation and discontinuity of palliative care services often result in suboptimal palliative care. In order to overcome these problems, models using an integrated care approach are i ...[more]

PMID: 25473377

Similar Datasets

Project description:BACKGROUNDIn case of untreatable suffering at the end of life, palliative sedation may be chosen to assure comfort by reducing the patient's level of consciousness. An important question here is whether such sedated patients are completely free of pain. Because these patients cannot communicate anymore, caregivers have to rely on observation to assess the patient's comfort. Recently however, more sophisticated techniques from the neurosciences have shown that sometimes consciousness and pain are undetectable with these traditional behavioral methods. The aim of this study is to better understand how unconscious palliative sedated patients experience the last days of their life and to find out if they are really free of pain.METHODSIn this study we will observe 40 patients starting with initiation of palliative sedation until death. Assessment of comfort based on behavioral observations will be related with the results from a NeuroSense monitor, an EEG-based monitor used for evaluation of the adequacy of anesthesia and sedation in the operating room and an ECG-based Analgesia Nociception Index (ANI) monitor, which informs about comfort or discomfort condition, based on the parasympathetic tone. An innovative and challenging aspect of this study is its qualitative approach; "objective" and "subjective" data will be linked to achieve a holistic understanding of the study topic. The following data will be collected: assessment of pain/comfort by the patients themselves (if possible) by scoring a Visual Analogue Scale (VAS); brain function monitoring; monitoring of parasympathetic tone; caregivers' assessment (pain, awareness, communication); relatives' perception of the quality of the dying process; assessment by 2 trained investigators using observational scales; video and audio registration.DISCUSSIONMeasuring pain and awareness in non-communicative dying patients is both technically and ethically challenging. ANI and EEG have shown to be promising technologies to detect pain that otherwise cannot be detected with the "traditional" methods. Although these technologies have the potential to provide objective quantifiable indicators for distress and awareness in non-communicative patients, strikingly they have not yet been used to check whether the current assessments for non-communicative patients are reliable.TRIAL REGISTRATIONThe study is registered on ClinicalTrials.gov (Identifier: NCT03273244 ; registration date: 7.9.2017).

Project description:Population ageing has rapidly increased the number of people requiring end-of-life care across the globe. Governments have responded by promoting end-of-life in the community. Partly as a consequence, older spouses are frequently providing for their partner's end-of-life care at home, despite potentially facing their own health issues. While there is an emerging literature on young-old caregivers, less is known about spouse carers over 75 who are likely to face specific challenges associated with their advanced age and relationship status. The aim of this review, therefore, is to identify and synthesise the literature concerning the experiences of caregiver's aged 75 and over whose partner is approaching end-of-life. We conducted a mixed-method systematic review and narrative synthesis of the empirical literature published between 1985 and May 2019, identified from six databases: Medline, PsychINFO, Cumulative Index to Nursing and Allied Health Literature, Embase, Sociological Abstracts and Social Service Abstracts. Hand searching and reference checking were also conducted. Gough's Weight of Evidence and Morgan's Feminist Quality Appraisal tool used to determine the quality of papers. From the initial 7819 titles, 10 qualitative studies and 9 quantitative studies were included. We identified three themes: 1) "Embodied impact of care" whereby caring was found to negatively impact carers physical and psychological health, with adverse effects continuing into bereavement; 2) "Caregiving spouse's conceptualisation of their role" in which caregiver's navigated their self and marriage identities in relation to their partner's condition and expectations about gender and place; 3) "Learning to care" which involved learning new skills and ways of coping to remain able to provide care. We identified a recent up-surge in published papers about very old spousal caregivers, which now comprise a small, medium-quality evidence base. This review outlines a range of potential lines of inquiry for future research including further clarification of the impact of caregiving on the likelihood of mortality, the incidence of men and women providing end-of-life care amongst this age group, and the role of anticipatory grief in shaping their perceptions of their relationship and their own longevity.

Project description:BACKGROUND:Despite the great advances in the concept of palliative care (PC) and its benefits, its application seems to be delayed, leaving unfulfilled the many needs of patients and family members. One way to overcome this difficulty could be to develop a new training programme by palliative care specialists to improve PC primary skills in healthcare professionals. The aim of this study was to evaluate the training's impact on trainees within a hospital setting using Kirkpatrick's and Moore's models. METHODS:We adopted a mixed-method evaluation with concurrent triangulation. The evaluation followed the first three steps of Kirkpatrick's and Moore's models and included a pre- and post-training evaluation through self-administered questionnaires and focus groups. We used the McNemar statistical test. RESULTS:The results highlighted the significant amount of knowledge acquired by the hospital professionals after training, in terms of increasing their knowledge of palliative care and in terms of the change in meaning that they attributed to phenomena related to chronicity and incurability, which they encounter daily in their professional practice. In both quantitative and qualitative research, the results, in synthesis, highlight: (i) the development of a new concept of palliative care, centred on the response to the holistic needs of people; (ii) that palliative care can also be extended to non-oncological patients in advanced illness stages (our training was directed to Geriatrics and Nephrology/Dialysis professionals); (iii) the empowerment and the increase in self-esteem that healthcare professionals gained, from learning about the logistical and structural organization of palliative care, to activate and implement PC; (iv) the need to share personal aspects of their professional life (this result emerges only in qualitative research); (v) the appreciation of cooperation and the joining of multiple competences towards a synergistic approach and enhanced outcomes. CONCLUSION:It is necessary to further develop rigorous research on training evaluation, at the most complex orders of the Kirkpatrick and Moore models, to measure primary PC skills in health care professionals. This will develop the effectiveness of the integration of I- and II-level palliative care competencies in hospitals and improve outcomes of patients' and families' quality of life.

Project description:COVID-19 has presented a substantial burden on students and healthcare staff. This mixed-method, descriptive and correlational study aimed to: 1) describe academic; and 2) professional burnout levels; 3) their associations with working in COVID-19-related care; and 4) with perceived COVID-19 impact on studies and internships among medical students and residents. We hypothesized burnout levels to be high; those involved in COVID-19 care to experience higher impact of COVID-19 on studies and work, and to experience higher levels of academic and professional burnout than those not involved in COVID-19 care; academic and professional burnout to be higher when perceived burden due to COVID-19 was higher. During first lockdown in Belgium, a mixed-method cross-sectional survey assessed academic burnout (MBI-SS) and professional burnout in relation to internships and residency (MBI-HSS). Correlations and t-tests tested associations of burnout with involvement in COVID-19-related care and perceived impact of COVID-19 on studies and work (SPSS). Participants provided open-ended comments which were thematically analysed (NVivo). In total, 194 medical students and residents participated (79.5% female, M age = 24.9 ± 2.5). Emotional exhaustion and depersonalisation were high in professional burnout, but moderate in academic burnout. Those involved in COVID-19 related care perceived a higher impact of COVID-19 on their studies and internship/residency and have higher professional burnout, but do not show a higher academic burnout. Those who have a higher perceived impact of COVID-19 on their studies scored higher on academic burnout. Participants mentioned an increased workload (e.g., having to be constantly available and constantly adapt), distress (e.g., uncertainty, fatigue, fear for impact on significant others), fewer learning opportunities (e.g., cancelled internships, changing learning methods), lack of relatedness with patients and supervisors (e.g., lack of respect and understanding from supervisors, distance created by phone consultations with patients) and cynicism towards remote care or non-medical tasks (e.g., considering what they do is not useful or not what they trained for). Students and residents showed indications of professional and academic burnout in relation to the COVID-19 situation. Interventions are needed that can meet the needs of achieving learning outcomes, managing extreme situations and relatedness. Supplementary Information The online version contains supplementary material available at 10.1186/s12909-022-03694-z.

Project description:BackgroundSeveral studies have characterized the experiences of family members caring for patients undergoing chemotherapy; however, information about the experiences of older spousal caregivers with intensive caregiving burdens is unclear. Recently, more older patients have been diagnosed with cancer due to the aging population worldwide. Therefore, this study evaluated the patterns in the experiences of older spousal caregivers of patients undergoing palliative chemotherapy for advanced cancer.MethodsQualitative research using semi-structured interviews was used in this study involving 10 older spousal caregivers of patients undergoing palliative chemotherapy at a hospital providing advanced cancer care in Japan. The data obtained were analyzed qualitatively and inductively using thematic analysis by Braun and Clarke.ResultsFour themes were identified from the narratives of the participants in this study. The first theme was "getting used to living with the disease," indicating that the older spouses gradually became accustomed to living with the patient through continued caregiving. The second theme was "deepening view of life and death," indicating that the older spouses' views of life and death were deepened by being confronted with patients' quality of life until death. The third theme was "anxious about the future," indicating the fear regarding the patient's progressive diseases and anxiety pertaining to continuing care for the patient while dealing with their health problems. The final theme was "desire for a better rest of life," indicating that the couple felt their bond was strengthened through caregiving and wishes to live well for the rest of their lives.ConclusionsThe patterns in the experience of older spousal caregivers caring for patients undergoing palliative chemotherapy indicated an aspect of rebuilding their lives as they became accustomed to caregiving, while strengthening their marital bond. The caregiving process involved a mix of emotions, including anxiety about the spousal caregiver's health problems worsening. However, the caregivers recognized the value of their remaining time. Therefore, they had deep concern for the patient's comfort, concealing their feelings so that the patient would feel comfortable. This study can contribute to understanding the challenges faced and support needed by older spousal caregivers.

Dataset Information

Experiences of patients, family and professional caregivers with Integrated Palliative Care in Europe: protocol for an international, multicenter, prospective, mixed method study.

Background

Methods/design

Discussion

Publications

Experiences of patients, family and professional caregivers with Integrated Palliative Care in Europe: protocol for an international, multicenter, prospective, mixed method study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets