Challenges of regional hospice and palliative care networks: A group discussion study with coordinators and network experts.

Background: Within hospice and palliative care, professionals from various disciplines collaborate to deliver comprehensive care to terminal patients and their relatives. Regional hospice and palliative care networks exist in various countries, aimed at facilitating cooperation among health care providers at a local level. To date, little is known about the challenges faced by these networks.

[Too thin on the ground? Regional disparities in hospice and palliative care in Germany].

Introduction: Outpatient and inpatient hospice and palliative care services have been significantly expanded in Germany in recent decades and are increasingly being supplemented by day care services. However, the availability of these services varies greatly from region to region. The extent to which the availability of these care structures is matched by a regional need based on local population structures is as yet unknown.

Recommendations for Psychosocial Support for Long-Distance Caregivers of Terminally Ill Patients.

Context: The provision of appropriate psychosocial support has a significant impact on quality of life for informal caregivers of terminally ill patients. Long-distance caregivers have specific wishes and needs for psychosocial support.

Objectives: To date, no formal support measures for long-distance caregivers of terminally ill patients have been developed in Germany.

Regional hospice and palliative care networks worldwide: scoping review.

Background: Regional hospice and palliative care networks (RHPCNs) are increasingly being established to improve integrative care for patients with life-limiting illnesses. This scoping review aimed at identifying and synthesising international literature on RHPCNs, focusing on structures, outcomes, benefits, success factors and good practices.

Method: Following Arksey and O'Malley's (2005) framework, a search of four electronic databases (CINAHL, Google Scholar, PubMed, Web of Science Core Collection) was conducted on 7 July 2023.

Non-kin caregivers of terminally ill people: Contributions, experiences, and needs: A protocol for a mixed-methods study.

Background: The role of non-kin caregivers, such as friends, neighbours, and acquaintances, in providing end-of-life care is significant but often overlooked in research and policy discussions. These caregivers provide extensive support for individuals in end-of-life care, in addition to or instead of family members. However, there is limited evidence in the literature regarding the experiences, burdens, and benefits of non-kin caregivers.

Consensus-based recommendations for the development and expansion of palliative day care clinics in Germany: results of a Delphi study.

Background: Needs-based, patient-oriented palliative care includes palliative day care clinics as a specialized semi-inpatient care offer. However, the establishment and development of these facilities has been unsystematic. Research is needed to strengthen their transparency and ensure their accessibility, quality, and structural adequacy.

"Has Anyone Been There Now?": An Interview Study on the Support Experiences and Unmet Needs of Informal Long-Distance Caregivers for Patients at the End of Life.

In the German context, research is lacking on the support experiences and unmet needs of informal caregivers in end-of-life situations who are geographically distanced from their ill relatives. The current study aimed at deepening our understanding of the specific end-of-life support experiences and needs of informal long-distance caregivers. The study employed an explorative design, applying qualitative interviews.

Patients' and Relatives' Preferences for Outpatient and Day Care Services Within End-of-Life Care in Germany - A Discrete Choice Experiment.

Purpose: In Germany, patients with incurable chronic diseases living at home increasingly have the option of using outpatient and day care hospice and specialized palliative care services. The present study examined and compared patients' and their relatives' preferences for end-of-life outpatient and day care services.

Patients And Methods: The study used a questionnaire integrating a discrete choice experiment.

[Empirically derived recommendations for the development and expansion of day hospices in Germany - Results of a Delphi expert panel].

Introduction: A needs-based and patient-oriented hospice and palliative care also includes day hospices as a specialised semi-inpatient care offer. The establishment and development of these facilities in Germany has been rather unsystematic. In order to ensure quality and adequacy of these structures, research is needed.

Status exploration and analysis of regional hospice and palliative care networks in Germany: A protocol for a mixed-methods study.

Background: Multi-professional cooperation between healthcare providers is a key quality criterion of hospice and palliative care. While hospice and palliative care networks can support cooperation on a local level, opportunities for wider cooperation through the establishment and development of regional hospice and palliative care networks in Germany have not yet been explored systematically.

Aims: The HOPAN study aims at: (1) identifying regional hospice and palliative care networks in Germany, (2) analysing these networks using an adapted quality assessment tool, and (3) proposing setting-sensitive recommendations for network development and exploring the benefits of these recommendations.

Experiences and support needs of informal long-distance caregivers at the end of life: a scoping review.

Objectives: There is a lack of research on the specific experiences and needs of geographically distant kin caregivers in end-of-life situations. Clinicians and researchers would benefit from a systematic overview. The scoping review aimed at examining the international literature on the experiences and needs of informal long-distance (LD) caregivers at the end of life, to address gaps in the evidence base, and to make recommendations for further research.

Expert Perspectives on the Additional Benefit of Day Hospices and Palliative Day Care Clinics in Germany: A Qualitative Approach.

In Germany, hospice and palliative care is well covered through inpatient, outpatient, and home-based care services. It is unknown if, and to what extent, there is a need for additional day care services to meet the specific needs of patients and caregivers. Two day hospices and two palliative day care clinics were selected.

Long-distance caregiving at the end of life: a protocol for an exploratory qualitative study in Germany.

Background: Of the approximately 4.7 million people in Germany caring for a relative, many live at a geographical distance from their loved one. The provision of remote care to a terminally ill patient is associated with specific challenges and burdens.

Consensus-based recommendations for psychosocial support measures for parents and adult children at the end of life: results of a Delphi study in Germany.

Purpose: The availability of psychosocial support measures has a significant impact on the quality of life of terminally ill and dying patients and the burden experienced by their relatives. To date, no intervention has specifically focused on promoting interaction within the dyads of the following: (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children. A national Delphi study was conducted to provide appropriate recommendations for dyadic psychosocial support measures.

Status, demand and practice models of palliative day-care clinics and day hospices: a scoping review.

Background: Little is known about the structure, accessibility, service provision and needs of palliative and hospice day-care in Germany and abroad. Researchers, healthcare providers and policy makers would benefit from a systematic overview.

Aim: The aim was to identify, describe and summarise available evidence on status, demand and practice models of palliative day-care clinics and day hospices.

Exploring the status of and demand for palliative day-care clinics and day hospices in Germany: a protocol for a mixed-methods study.

Background: To date, the establishment and development of palliative day-care clinics and day hospices in Germany have been completely unsystematic. Research is needed to gain insight into these services and to ensure their accessibility and quality. Accordingly, the ABPATITE research project aims at: (1) identifying the characteristics of palliative day-care clinics and day hospices in Germany, (2) determining demand and preferences for these services, and (3) proposing recommendations (with expert agreement) for the needs-based establishment and development of these services.

Communication in dyads of adult children at the end of life with their parents and parents at the end of life with their adult children: Findings from a mixed-methods study.

Objective: Patient-family member communication plays a decisive role in coping with an end-of-life situation and is strongly influenced by the dyadic relationship. There is a lack of research exploring and comparing the specifics of communication between (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children. The present study aimed at describing and comparing communication specifics within these two dyads.

'Mums are sacred, and mums don't die': A mixed-methods study of adult child-parent dyadic relationships at the end of life.

Objectives: The aim of the present study was to report the specific challenges pertaining to the experiences and needs of (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children, regarding their relationship and relationship roles. The study sought to identify similar and differing relationship patterns between the two dyadic types.

Design: This prospective observational study used an exploratory mixed-methods approach.

'She Can't Support Me Because She's so Old': A Mixed-Methods Study of Support Experiences and Needs in Adult Child-Parent Dyads at the End of Life.

Little is known about support experiences and needs in the dyads of (1) terminally ill adult children and their parent caregivers and (2) terminally ill parents and their adult child caregivers. The current study aimed at investigating the experiences and needs of adult children and parents in end of life situations regarding their provision and receipt of support. The study employed a convergent parallel mixed-methods design, combining explorative qualitative interviews with the quantitative self-report Berlin Social Support Scales.

Methodological Reflections on the Recruitment of Adult Child-Parent Dyads for End-of-Life Research in Germany: Experiences From the Dy@EoL Study.

Context: Although high-quality research with patients and family members is needed to improve palliative care, difficulties in recruitment are often reported.

Objectives: The present article analyzes the authors' experiences in recruiting participants of two types of dyads for the study "Dy@EoL-Interaction at the end of life in dyads of parents and adult children". Recruitment challenges and factors found to improve recruitment are examined.

[HA-BeL ("Hausärztliche Begleitung in der letzten Lebensphase"): Systematic development and adjustment of the German version of the General Practice End of Life Care Index].

Introduction: In Germany, no instruments exist to evaluate the practice and organisation of palliative care in general practice. The aim of this project was the systematic development and adjustment of a German version of the General Practice End of Life Care Index (GP-EoLC-I).

Methods: The translation and adaptation process followed the TRAPD model: translation, review, adjudication, pre-test, documentation.

'. . . and then no more kisses!' Exploring patients' experiences on multidrug-resistant bacterial microorganisms and hygiene measures in end-of-life care A mixed-methods study.

Background: In end-of-life care hygiene, measures concerning multidrug-resistant bacterial microorganisms may contradict the palliative care approach of social inclusion and be burdensome for patients.

Objectives: To integrate patients' perspectives on handling multidrug-resistant bacterial microorganisms at their end of life, their quality of life, the impact of positive multidrug-resistant bacterial microorganisms' diagnosis, protection and isolation measures on their well-being and patients' wishes and needs regarding their care.

Design: A mixed-methods convergent parallel design embedded quantitative data on the patients' multidrug-resistant bacterial microorganisms' trajectory and quality of life assessed by the Schedule for the Evaluation of Individual Quality of Life in qualitative data collection via interviews and focus groups.

Adult Child-Parent Dyadic Interactions at the End of Life: A Scoping Review.

Background: Being terminally ill affects not only the life of patients but also that of their loved ones. Dyads of adult children and their parents at the end of life may face specific challenges with regard to their relationship and interactions that need to be further examined.

Aim: The aim was to identify, describe and summarise available evidence on adult child-parent interaction and psychosocial support needs at the end of life.