[Group Discussions in Health Services Research - Part 2: Reflections on The Concept of Group, Moderation and Analysis of Group Discussions as well as Online Group Discussion]. / Gruppendiskussionen in der Versorgungsforschung ­ Teil 2: Überlegungen zum Begriff der Gruppe, zur Moderation und Auswertung von Gruppendiskussionen sowie zur Methode der Online-Gruppendiskussion.

This article is the second of 2 articles on group discussions in health services research, written by the Qualitative Methods Working Group of the German Network for Health Care Research (DNVF). It starts with theoretical considerations on the concept of groups, and provides specific knowledge about groups in general and the behaviour of individual group members in particular, which is relevant for the design and interpretation of interaction processes in the group context. The following sections deal with the processuality of group discussions, moderation styles and techniques as well as reflections on possible subjects and methods of analysis. Presentation of results and text passages which unveil the interaction structure of several discussion participants are also discussed here. Finally, insights into the special features, potentials and challenges of group discussions via online platforms are provided. Together, the two articles provide an overview of the most important aspects of the application of group discussions in the field of health services research.

[Medical Rehabilitation in MS: Barriers to and Facilitators of its Utilization from the Patients' Perspective]. / Medizinische Rehabilitation bei MS: Barrieren und Facilitatoren der Inanspruchnahme aus Patientensicht.

PURPOSE: Although there is evidence on the efficacy of multi-disciplinary rehabilitation in the case of MS, use of inpatient rehabilitation by patients with MS in Germany is comparatively low. Therefore, it was the aim of this study to determine potential barriers and facilitators of inpatient rehabilitation use as perceived by patients with MS. METHODS: Based on an extensive preliminary qualitative study a questionnaire was developed that addressed potential determinants of inpatient rehabilitation use by means of 45 items. Data were obtained mainly online from 590 patients with MS. Data analysis primarily included descriptive statistics. RESULTS: Patients' expectations regarding rehabilitation in the case of MS strongly focus on structural components of a rehabilitation clinic's quality and on participating in treatment decisions in the rehab setting. Barriers to MS-rehabilitation use are perceived to exist in terms of insufficient information on the scope and process of rehabilitation, insufficient support from physicians with respect to applying for rehabilitation and a lack of clarity with respect to the criteria upon which applications will be decided. A smaller proportion of respondents also consider family- and vocation-related factors as barriers to making use of MS-rehabilitation. CONCLUSION: Based on these findings, recommendations may be derived that may help reduce barriers to the use of inpatient rehabilitation by patients with MS. These include providing and improving information on the aims, interventions and effects of MS rehabilitation, information on how to apply for medical rehabilitation and the criteria on which applications are decided upon, as well as strengthening the role of the outpatient medical specialist.

[Group Discussions in Health Services Research - Part 1: Introduction and Deliberations on Selection of Method and Planning]. / Gruppendiskussionen in der Versorgungsforschung ­ Teil 1: Einführung und Überlegungen zur Methodenwahl und Planung.

Health services researchers focus on the players, structures and impact of health care in "real life". They investigate how social aspects, financing, organizational structures, technologies and personal attitudes affect the process and outcomes of health care. Qualitative research methods are used here, which address how people act according to their unique living conditions (outside the context of experimental studies). Different methods of debriefing groups are essential for qualitative health services research. In 2 subsequent articles, we aim to outline the diverse facets and possible range of implementation of the above-mentioned methods, in order to highlight the potential of debriefing groups in health services research (focus groups or group discussions) using these methods. In the current article, we would like to encourage researchers to reflect on relevant topics such as the selection of an appropriate method, the planning and undertaking of investigations including sampling methods, and questions regarding ethics and privacy. A follow-up article (in preparation) will deal with theoretical considerations of the term "group", as well as with the process of moderating discussions, methods of analyzing data and (qualitative) online research.

[Living and dying with frailty : Qualitative interviews with elderly people in the domestic environment]. / Leben und Sterben mit Gebrechlichkeit : Qualitative Interviews mit älteren Menschen im häuslichen Umfeld.

BACKGROUND: Frail older people are becoming an increasingly more important target group in healthcare provision. Little is known about patients' views on frailty and its various impacts, especially towards the end of life. This study was carried out to analyze the needs of frail elderly people at the end of life. METHOD: A qualitative, longitudinal case study design was applied and included 31 frail older patients (≥ 70 year) with a Canadian study of health and aging (CSHA) clinical frailty scale (CFS) grade 6/7 from urban and rural areas within the region of Lower Saxony. The analysis was based on guided interviews and followed the principles of grounded theory. RESULTS: From the patients' perspective frailty is perceived as a process of increasing complexity of health problems, increased vulnerability and reduced ability to perform tasks. Frailty is experienced as various deficits including the physical, psychological, social and existential dimensions. Living and dying in a familiar environment and maintaining autonomy was identified as a core category. Key determinants were access to and quality of healthcare services as well as various individual and social resources. CONCLUSION: A palliative biopsychosocial care approach should be established early in the process of frailty, including advance care planning in order to meet the patients' needs of staying in a familiar environment. General practitioners as well as home care nursing personnel have to collaborate in order to balance issues of autonomy with increased care needs and the support of informal carers as key partners towards the end of life.

Caring for frail older people in the last phase of life - the general practitioners' view.

BACKGROUND: Frail older people are an increasingly important group in primary care due to demographic change. For these patients, a palliative care approach may be useful to sustain the quality of life in the last phase of their lives. While general practitioners (GPs) play a key role in the primary care for older patients, general palliative care is still in its infancy and little is known in Germany about caring for frail older people towards the end of life. This study aims to explore the tasks and challenges regarding the care for frail older patients in the last phase of life from the GPs' point of view, and the latter's perception of their own role and responsibilities. METHODS: Explorative qualitative study based on semi-structured in-depth interviews with 14 GPs from urban and rural regions in Lower Saxony, Germany. Analysis was carried out according to the principles of Grounded Theory. RESULTS: The GPs' key commitment "caring for frail older patients until the end" as an integral part of primary care was worked out as a key category, flanked by central issues: "causal conditions and challenges," which include patients' preconditions and care needs as well as communication and cooperation aspects on the carers' level. "Barriers and facilitators within the health system" refers to prerequisites of the German healthcare system, such as high caseloads. Regarding "strategies to comply with this commitment", various self-developed strategies for the care of frail older people are presented, depending on the GPs' understanding of their professional role and individual circumstances. CONCLUSIONS: The GPs show a strong commitment to caring for the frail older patients until the end of life. However, it is a challenging and complex task that requires significant time, which can take GPs to their limits. There is a great need to improve patient-and family-centered proactive communication, as well as interprofessional cooperation. Strengthening the team approach in primary care could relieve the burden on GPs, especially in rural areas, while simultaneously improving end-of-life care for their patients.

Living with and dying from advanced heart failure: understanding the needs of older patients at the end of life.

BACKGROUND: Heart failure (HF) is a life-limiting illness and patients with advanced heart failure often suffer from severe physical and psychosocial symptoms. Particularly in older patients, HF often occurs in conjunction with other chronic diseases, resulting in complex co-morbidity. This study aims to understand how old and very old patients with advanced HF perceive their disease and to identify their medical, psychosocial and information needs, focusing on the last phase of life. METHODS: Qualitative longitudinal interview study with old and very old patients (≥70 years) with severe HF (NYHA III-IV). Interviews were conducted at three-month intervals over a period of up to 18 months and were analysed using qualitative methods in relation to Grounded Theory. RESULTS: A total of 95 qualitative interviews with 25 patients were conducted and analysed. The following key categories were developed: (1a) dealing with advanced heart failure and ageing, (1b) dealing with end of life; (2a) perceptions regarding care, and (2b) interpersonal relations. Overall, our data show that older patients do not experience HF as a life-limiting disease. Functional restrictions and changed conditions leading to problems in daily life activities were often their prime concerns. The needs and priorities of older HF patients vary depending on their disease status and individual preferences. Pain resulting in reduced quality of life is an example of a major symptom requiring treatment. Many older HF patients lack sufficient knowledge about their condition and its prognosis, particularly concerning emergency situations and end of life issues, and many expressed a wish for open discussions. From the patients' perspective, there is a need for improvement in interaction with health care professionals, and limits in treatment and medical care are not openly discussed. CONCLUSION: Old and very old patients with advanced HF often do not acknowledge the seriousness and severity of the disease. Their communication with physicians predominantly focuses on curative treatment. Therefore, aspects such as self-management of the disease, dealing with emergency situations and end-of-life issues should be addressed more prominently. An advanced care planning (ACP) programme for heart disease in older people could be an option to improve patient-centred care.

End of life care for frail older patients in family practice (ELFOP)--protocol of a longitudinal qualitative study on needs, appropriateness and utilisation of services.

BACKGROUND: Frail elderly people represent a major patient group in family practice. Little is known about the patients' needs, and how their needs evolve over time with increasing frailty towards the end of life. This study will address end-of-life care needs, service utilisation, and experiences of frail elderly patients and their informal caregivers, with regard to family practice. This paper aims to introduce the research protocol. METHODS/DESIGN: The study uses a multiple perspective approach qualitative design. The first study part consists of serial six-monthly in-depth interviews with 30 community-dwelling elderly patients (≥70 years) with moderate to severe frailty and their key informal caregivers, over a period of 18 months. Additionally, semi-structured interviews with the patients' family physician will be conducted. The serial interviews will be analysed with grounded theory and narrative approaches. Special attention will be paid to the comparison of distinct views of the patients', informal caregivers', and family physicians' as well as on chronological aspects. In the second study part, five focus groups with experts in family medicine, geriatrics, palliative medicine, and nursing will be conducted. Finally, the implications for family practice and health care policy will be discussed in an expert workshop. DISCUSSION: To our knowledge, this is the first prospective, longitudinal qualitative study on the needs of elderly patients with advanced frailty towards the end of life in German family practice, which integrates the perspectives of patients, informal caregivers, family physicians and other health professionals. The study will contribute to the understanding of the clinical, psychosocial and information needs of patients and their caregivers, and of respective changes of experiences and needs along the illness/frailty trajectory including the last phase of life. It will provide an empirical basis for improving patient-centred care for this increasingly relevant target group.

Developing targets for public health initiatives to improve palliative care.

BACKGROUND: Palliative Care is an approach that improves quality of life for patients and their families facing the problems associated with incurable life-threatening illness. In many countries, due to the rapidly ageing population, increasingly more people are suffering from serious chronic disease towards the end of life, making further development in palliative care a major public health challenge. The aim of this study was to develop the first targets for public health initiatives to improve palliative care in Germany. METHODS: Based on the findings from pilot studies (qualitative interviews and surveys with different stakeholders in the health care system), we conducted a modified Delphi study with two rounds of questionnaires with experts in public health and palliative care. In the first round, the experts commented on the findings from the pilot studies. The answers were evaluated descriptively and with qualitative content analysis, resulting in the formulation of 25 targets. These were presented to the experts in the second Delphi round to assess each of them separately with regard to its importance and current implementation (7-point answer scales) and in relation to the other targets (defining the five most important of the 25 targets). RESULTS: Six most relevant targets for public health initiatives to improve palliative care in Germany were worked out: Supporting palliative care as a basic attitude for the care of people in the last phase of life; coordinating healthcare for people in the last phase of life; establishing cooperation among health professions and disciplines; establishing education in palliative care for all professional groups with contact to people in the last phase of life; reviewing the evidence of palliative care measures; offering support to family members who are caring for someone in the last phase of life. CONCLUSIONS: To systematically develop palliative care, it makes sense to define fields of action with individual targets. For Germany, it can be recommended to give priority to the targets that were highlighted as the most relevant in this study. The next step will be to develop, implement and evaluate tangible measures to achieve these targets.

Rehabilitation use in multiple sclerosis: Do illness representations matter?

OBJECTIVES: Multidisciplinary rehabilitation improves illness outcomes and is recommended in clinical guidelines for multiple sclerosis (MS). However, many people with MS do not make use of rehabilitation. We do not know much about the barriers to the use of rehabilitation in MS, but in other patient groups, illness representations have proven to be predictors of service utilization. Therefore, the aim of our study was to explore whether, in patients with MS, illness representations are associated with self-reports of rehabilitation use in the past and the intention to use rehabilitation in the future, beyond sociodemographic and illness-related factors. MATERIALS AND METHODS: Patients were recruited in a cross-sectional nationwide online survey in Germany. Hierarchical binary logistic regression analysis was used to analyze whether illness representations are associated with the use of rehabilitation in the past and the intention to use rehabilitation in the future, over and above socio-demographic and illness-related variables. RESULTS: There were 590 patients, who had MS, participating in the study. Illness representations were correlated to both outcome variables beyond sociodemographic and illness-related factors: The probabilities of having the intention to use rehabilitation and of making using of rehabilitation were higher in patients who believed that their MS was controllable by treatment and perceived that their MS would have severe consequences. CONCLUSIONS: Our data suggest that addressing patients' illness representations may facilitate the intention to use and the use of multimodal rehabilitation, contributing to better illness outcomes.

'Who is going to explain it to me so that I understand?' Health care needs and experiences of older patients with advanced heart failure.

Heart failure is a leading cause of death and can result in significant palliative care needs. The aim of this study was to explore the needs of older patients with advanced heart failure, and their experiences with health care delivery in Germany. Qualitative interviews were carried out with 12 patients (6 men, 6 women; age 73-94 years; heart failure in an advanced stage according to the New York Heart Association Functional Classification) recruited in two geriatric hospitals. The interviews were analyzed by a qualitative descriptive approach. The main categories derived from the patient interviews were: understanding of illness and prognosis, health care services and social life. The patients expressed the need for better information and communication regarding illness and prognosis, and the desire for more respectful treatment by health care providers. Heart failure was not recognized as a potentially life-limiting disease, and the patients had no experience with palliative care services. The study emphasizes the need for improving communication with patients with advanced heart failure. To achieve this, strengthening the palliative care approach in all relevant services that deliver care for these patients and introducing advanced care planning appear to be promising strategies.