[Citizen-centred health care in Germany: An analysis of expert interviews]. / Bürgerzentrierte Gesundheitsversorgung in Deutschland ­ eine Analyse von ExpertInneninterviews.

BACKGROUND: Citizens can represent a relevant key resource in health care, for example by actively practicing preventive health care and managing their own health care needs. In Germany, the role of citizens in the health care system has not yet been defined. Therefore, the aim of this study is, as a first step, to determine what is meant by "citizen-centred healthcare", since there is, as yet, no clear definition. METHODS: Between September and November 2022, semi-structured expert interviews were conducted with representatives from the fields of politics and self-administration and service providers and, with their consent, recorded and transcribed. A category system was developed inductively and deductively based on Mayring's content analysis. Using this, two members of the project team coded the interviews independently of each other using the QCAmap software. After a replication check of the deviations, the content could then be analyzed. RESULTS: A total of n = 10 interviews were conducted (n = 3 service providers, n = 2 self-administration, n = 5 politicians). The analysis revealed two different understandings of citizen-centred healthcare. Some of the experts understand citizen-centred healthcare as care that is provided close to home and easily accessible for citizens. The others interpret the term as care where citizens take on an active role. All interviewees saw the lack of health literacy among citizens as a key challenge. The social imbalance, which creates an inequality of opportunity in the involvement of citizens, was also mentioned several times. Opportunities were generally understood as the possibility of conserving resources and maintaining health. The analysis shows that there is still a lack of solutions that specifically address these challenges as well as the implementation of citizen-centred health care. DISCUSSION: The expert interviews demonstrate that there are two fundamentally different understandings of citizen-centred healthcare and how it should be established in Germany. Future research should therefore pursue the goal of developing a definition of "citizen-centred health care" by expert consensus. This can then form the basis for concrete, future goals for action. There was consensus among the experts regarding the problems that need to be considered in this context. Factors such as citizens' lack of health literacy and social imbalance should therefore be given more attention in the future.

Rationale and design of the EPCHF trial: the early palliative care in heart failure trial (EPCHF).

The progressive nature of heart failure (HF) coupled with high mortality and poor quality-of-life (QoL) mandates greater attention to palliative care (PC) as a routine component of HF management. Limited evidence exists from randomized controlled trials supporting the use of interdisciplinary palliative care in the progressive course of HF. The early palliative care in heart failure trial (EPCHF) is a prospective, controlled, nonblinded, multicenter study of an interdisciplinary palliative care intervention in 200 patients with symptomatic HF characterized by NYHA ≥ 2. The 12-month EPCHF intervention includes monthly consultations by a palliative care team focusing on physical and psychosocial symptom relief, attention to spiritual concerns and advance care planning. The primary endpoint is evaluated by health-related QoL questionnaires after 12 months of treatment. First the functional assessment of chronic illness therapy palliative care (FACIT-Pal) score evaluating QoL living with a chronic disease and second the Kansas City cardiomyopathy questionnaire (KCCQ) measuring QoL living with heart failure will be determined. Secondary endpoints are changes in anxiety/depression (HADS), symptom burden score (MIDOS), spiritual well-being functional assessment of chronic illness therapy spiritual well-being scale (FACIT-Sp), medical resource and cost assessment. EPCHF will help evaluate the efficacy and cost-effectiveness of palliative care in symptomatic HF using a patient-centered outcome as well as clinical and economic endpoints. EPCHF is funded by the Bundesministerium für Bildung und Forschung (BMBF, 01GY17).

Audiobooks from terminally ill parent for their children - a qualitative evaluation.

BACKGROUND: Improving the quality of life is one of the main objectives of palliative care. Biographical approaches are often used in combination with leaving a legacy in a range of different interventions such as Dignity Therapy or Life Review. This study presents an evaluation of audiobook biographies for palliative care patients with young children. METHODS: Young parents diagnosed with a life-limiting disease could participate and create an audiobook for their young children. The audiobook itself was recorded over several days and edited by qualified radio journalists. After providing informed consent participants were interviewed twice over the course of the intervention regarding expectations, concerns, motivation, and experiences. Interviews and notes were transcribed verbatim and were analyzed using content analysis. The contents of the audiobooks are not part of the evaluation. RESULTS: The data were collected from February 2017 till September 2020. Fifty-four patients with ninety-six children at a mean age of 7 years were included and created an audiobook. The main theme of all interviews were the children. Within this field identified main topics were legacy, motivation, usage, benefit, aims, difficulties and worries in descending order. All patients would recommend the intervention. CONCLUSION: Creating an audiobook as a legacy to their children seemed to help the diseased parents to cope with their limited life span.

Availability as key determinant in the palliative home care setting from the patients' and family caregivers' perspectives: A quantitative-qualitative-content analysis approach.

OBJECTIVE: A sense of security is important in palliative home care. Yet, knowledge about which components contribute most to feeling secure from the patients' and family caregivers' perspectives, especially since the introduction of specialist palliative home care, is sparse. The goal of the current study was to determine the key components contributing to a sense of security and how they relate to each other as experienced by patients and family caregivers in specialist and generalist palliative home care. METHODS: The current sub-study, as part of a larger study, was performed in different regions in Germany. Palliative care patients and family caregivers of at least 18 years of age, being cared for at home were interviewed using semi-structured interview guides following a three-factor model and analyzed by using a combined quantitative-qualitative-content approach. RESULTS: One hundred and ninty-seven patients and 10 carers completed interviews between December 2017 and April 2019. The majority of patients were diagnosed with an oncological disease. Sense of security was mentioned particularly often suggesting its high relevance. We identified nine subcategories that were all mentioned more frequently by specialist than generalist palliative home care recipients in the following order of priority and relation: (i) patient-centeredness: availability, provision of information/education, professional competence, patient empowerment, and trust (ii) organizational work: comprehensive responsibility, external collaboration, and internal cooperation, and (iii) direct communication. SIGNIFICANCE OF RESULTS: The work of specialist palliative home care services in particular was perceived as very effective and beneficial. Our findings confirm a previously developed three-factor model allowing for generalizability and revealed that availability was most important for improving the sense of security for effective palliative home care.

Volunteers in a biography project with palliative care patients - a feasibility study.

BACKGROUND: Increasing the quality of life with short interventions for vulnerable patients is one of the objectives of palliative care. Biographical approaches are used in a range of different interventions which may require considerable resources of staff time and energy. This study evaluated the feasibility of training hospice volunteers in biographical interviews of patients confronted with a life-limiting disease. For the purpose of this study, we evaluated resources such as time needed for training, coordination and supervision, outcome such as completion of the intervention in appropriate time and risks such as causing distress in patients or volunteers as major determinants of feasibility. METHODS: Nine volunteers from a hospice service attended an advanced training with an introduction to palliative care, biography work, interview techniques, transcribing and writing. Volunteers interviewed a patient and developed a written narrative from the interview. Volunteers completed a questionnaire before training and were interviewed at the end of the project. The interviews were audiotaped, transcribed, and evaluated using descriptive and qualitative content analysis. RESULTS: Patients provided positive feedback from the intervention. Volunteers felt that their involvement was personally rewarding and were moved by the courage and confidence of the patients. There were no systematic problems or negative experiences reported neither by volunteers nor by patients. CONCLUSIONS: We found the use of volunteers for biography work with patients in palliative care feasible and effective in this study. Volunteers needed supervision and ongoing support in providing this intervention.

A Review of Biographical Work in Palliative Care.

AIM: We find several interventions in palliative care to cover psychosocial needs and to relieve distress of patients. There is a growing interest in therapies using biographical approaches, but discussion about interventions is sparse, and there is no concept for comprehensive and sustainable provision. Research on interventions with a single biographical approach is available, but there is no systematic review that tests a range of interventions. Therefore, we look at all studies using biographical approaches for patients and/or caregivers. METHODS: In May 2017, the electronic databases of Medline, PubMed, EMBASE, Central, and PsycINFO were searched for qualitative and quantitative empirical reports. Interventions for patients, dyads of patient and caregiver, and bereaved caregivers were included. Data analysis follows the guideline PRISMA. RESULTS: Twenty-seven studies were included - 12 using a quantitative evaluation and 15 using a qualitative evaluation. Interventions using biographical approach are widespread and show broad variations in comprehension and performance. The scope of interest lays on patient and family in trajectory of illness and bereavement. The most common interventions used were life review, short life review, dignity therapy, and bereaved life review. Biographical approaches increase quality of life and spiritual well-being and reduce depression. Interventions show effects independently of the number of sessions or provider. CONCLUSIONS: Transferability of concepts seems limited due to the implications of culture on themes emerging in interventions. In some case, there were predicting factors for responders and nonresponders. Further research is needed.

Patients' priorities in a reminiscence and legacy intervention in palliative care.

BACKGROUND: Reminiscence is used in a range of different interventions in palliative care, for example, Dignity Therapy or Life Review. However, literature has focused mainly on the methodology, and little has been published on patients' priorities and primary concerns. OBJECTIVE: This study looks at themes emerging in a reminiscence intervention with patients confronted with a life-limiting disease. Interviews were audiotaped and transcribed verbatim. Transcripts were analysed using thematic analysis. SETTING/SUBJECTS: Seventeen patients who were receiving palliative care at the University Hospital Bonn participated in interviews reviewing parts or phases of their lives. RESULTS: Patients expressed satisfaction and a sense of well-being with the intervention. Major themes emerging in the interviews were the factors involved in the development and expression of personality, such as character-forming influences, self-image, self-awareness, and philosophy of life. Talking about personality was entangled with influences from growing up, qualification/job, partner/spouse, children, resources, twists of fate/crossroads, and coping. CONCLUSION: The topics emerging from the interviews differed from the scope of guiding questions in common reminiscence methods like Life Review or Dignity Therapy. The underlying motivation of patients seemed to be the search for identity and continuity in one's life.

Towards accessible integrated palliative care: Perspectives of leaders from seven European countries on facilitators, barriers and recommendations for improvement.

PURPOSE: Literature suggests that integrated palliative care (IPC) increases the quality of care for palliative patients at lower costs. However, knowledge on models encompassing all integration levels for successfully implementing IPC is scarce. The purpose of this paper is to describe the experiences of IPC leaders in seven European countries regarding core elements, facilitators and barriers of IPC implementation and provides recommendations for future policy and practice. DESIGN/METHODOLOGY/APPROACH: A qualitative interview study was conducted between December 2013 and May 2014. In total, 34 IPC leaders in primary and secondary palliative care or public health in Belgium, Germany, Hungary, Ireland, the Netherlands, Spain and the UK were interviewed. Transcripts were analysed using thematic data analysis. FINDINGS: IPC implementation efforts involved a multidisciplinary team approach and cross-sectional coordination. Informal professional relationships, basic medical education and general awareness were regarded as facilitators of IPC. Identified barriers included lack of knowledge about when to start palliative care, lack of collaboration and financial structures. Recommendations for improvement included access, patient-centeredness, coordination and cooperation, financing and ICT systems. ORIGINALITY/VALUE: Although IPC is becoming more common, action has been uneven at different levels. IPC implementation largely remains provisional and informal due to the lack of standardised treatment pathways, legal frameworks and financial incentives to support multilevel integration. In order to make IPC more accessible, palliative care education as well as legal and financial support within national healthcare systems needs to be enhanced.

["He is not that important anymore" : General practitioners in a specialized palliative home care setting from a patient's point of view]. / "Der spielt im Moment nicht mehr ganz die Rolle" : Der Hausarzt in der spezialisierten ambulanten Palliativversorgung aus Patientenperspektive.

BACKGROUND: The outpatient medical care of palliative patients (PPs) has always fallen within the duties of general practitioners. Since the specialized palliative out-patient care (SAPV) legislation in 2007 palliative home care teams (PCTs) were established, providing holistic medical, nursing, and psychosocial support for patients with life-limiting illness and their care providers. OBJECTIVES: The article explores the role of GPs in palliative home care settings with PCTs from the patient's perspective. MATERIALS AND METHODS: From December 2014 to January 2015 we conducted 23 qualitative, semi-structured interviews with severely ill patients receiving specialist palliative care at home in Germany. The theory-based analysis followed the qualitative content analysis according to Mayring. RESULTS: The expectations of PPs towards their GP in integrated palliative care were influenced by individual criteria such as availability, intensity and duration of the doctor-patient-relationship. In relation to the quality of the long-term relationship and more specifically for basic medical care GPs still play an important role. On the other hand, PCTs are becoming increasingly important. In addition to the pain-management and symptom control responsibilities, they meet the daily care needs of PPs and their caregivers by coordinating the care network as well as providing psychosocial support and 24/7-care. CONCLUSIONS: Shifting of traditional tasks from GPs to PCTs influences the role of the GP. PCTs can unburden the GP from unrealistic expectations and improve the patients' quality of life. However, this leads to a tendency for reduced importance of the GP.

[Anxiety in progressive disease]. / Angst bei fortschreitenden Erkrankungen.

Anxiety in terminally ill patients has a high impact on symptoms, trajectory and quality of life. There are different screening instruments for diagnosis. The holistic approach of palliative care considers the physical, psychological, social and spiritual needs and can improve the distress caused by anxiety. Early integration in palliative care decreases burden of symptoms and increases quality of life.