"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. Thirty-three long-distance family caregivers participated in the study (December 2021-October 2022). The results showed that long-distance caregivers relied on close exchange and cooperation with local family and non-kin caregivers. They also expressed the wish to be considered more proactively by professional caregivers, with respect to their specific geographic situations. They further recommended that local care networks be built to support patients. Hypotheses were deduced from long-distance caregivers' recommendations for support interventions. The results may be useful for the development of an online information resource for long-distance caregivers in end-of-life situations.

[Empirically derived recommendations for the development and expansion of day hospices in Germany - Results of a Delphi expert panel]. / Empirisch abgeleitete Empfehlungen für den Auf- und Ausbau von Tageshospizen in Deutschland ­ Ergebnisse einer Delphi-Befragung mit Expert:innen.

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. METHODS: A Delphi consensus study was conducted online from November 2022 to February 2023 aiming at generating recommendations for the development and expansion of day hospices in Germany. For each recommendation, the participants indicated on a four-point verbal rating scale how much they agreed upon a) the relevance and b) the feasibility of the recommendation. Items were considered consented when 80% of the participants (strongly) agreed with the recommendation regarding both criteria. If no consensus was reached, the recommendations were revised according to the participants' free text comments and presented in the next Delphi round. Descriptive analyses were applied. RESULTS: A total of 64 experts participated in the first Delphi round and 44 in the second. In round 1, 34 recommendations and in round 2 six recommendations were consented. The final set contains a total of 40 recommendations: 18 on the tasks of day hospices, 13 on cooperation, 7 on funding, and 2 on public relations. DISCUSSION: Recommendations for the development and expansion of day hospices in Germany were developed. Due to their highly rated feasibility, the recommendations should be directly transferable into care practice. It remains to be seen to what extent they will be taken into account in the renegotiation of the framework agreement for day hospices. CONCLUSION: The Delphi-consented recommendations provide a basis to guide action in the currently very dynamic development of hospice work and palliative care in Germany.

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. For six scenarios, participants chose between two hypothetical end-of-life care offers, described by seven attributes. The model compared place of care, frequency and duration of care and support, specialized medical palliative care, accompanied activities, and relieving patient counselling. The model also included optional overnight care and willingness to pay. Patients and the relatives of patients suffering from incurable, chronic diseases who were not yet receiving palliative care were recruited via hospitals and self-help groups (06/2021-07/2022). Results: The results were based on data from 436 questionnaires (patients: n=263, relatives: n=173). All attributes had a statistically significant impact on choice decisions, with place of care showing the greatest importance. All respondents highly preferred care in the patient's home over out-of-home care. Patients stressed the importance of special medical (palliative) care and valued accompanied activities, often facilitated by hospice volunteers. Relatives, but not patients, considered the frequency and duration of care highly relevant. Conclusion: The results suggest a higher demand for care in the patient's home than for out-of-home care. Patients' and relatives' high preference for special medical care and the relief of family caregiver burden should be considered in the design of day care services.

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

Background: 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. Methods: Two day hospices and two palliative day care clinics were selected. In the first step, two managers from each facility (n = 8) were interviewed by telephone, using a semi-structured interview guide. In the second step, four focus groups were conducted, each with three to seven representatives of hospice and palliative care from the facilities' hospice and palliative care networks. Interviews and focus groups were audio recorded, transcribed verbatim and analyzed using qualitative content analysis. Results: The interviewed experts perceived day care services as providing additional patient and caregiver benefits. Specifically, the services were perceived to meet patient needs for social interaction and bundled treatments, especially for patients who did not fit into inpatient settings (due to, e.g., their young age or a lack of desire for inpatient admission). The services were also perceived to meet caregiver needs for support, providing short-term relief for the home care situation. Conclusions: The results suggest that inpatient, outpatient, and home-based hospice and palliative care services do not meet the palliative care needs of all patients. Although the population that is most likely to benefit from day care services is assumed to be relatively small, such services may meet the needs of certain patient groups more effectively than other forms of care.

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. METHODS: HOPAN is a prospective, observational, mixed-methods study comprising three work packages (WPs). In WP1, the stock of regional hospice and palliative care networks in Germany will be identified via database, literature, and internet research. In WP2a, focus groups will be conducted to adapt an existing maturity model for healthcare networks to regional hospice and palliative care networks. In WP2b, a questionnaire will be sent to each identified regional hospice and palliative care network to gain insight into their structure and status of development. In WP2c, group discussions will be conducted to develop setting-sensitive recommendations for these networks. Finally, in WP3, these recommendations will be sent to all participating hospice and palliative care networks, and the benefits of the recommendations will be evaluated via a questionnaire. DISCUSSION: Empirically developed setting-sensitive recommendations should enable the systematic establishment and management of regional hospice and palliative care networks in Germany, considering the specific needs and potential of each network. The study findings are expected to improve the overall development of hospice and palliative care services. TRIAL REGISTRATION: The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00030629; date of registration: 02 November 2022). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.

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. DESIGN: The scoping review was conducted according to the methodological framework of Arksey and O'Malley. Studies of various designs involving kin caregivers were analysed narratively. DATA SOURCES: A highly sensitive strategy was used to search CINAHL, Google Scholar, PsycInfo, PubMed and Web of Science Core Collection, from inception to 8 November 2021, with searches rerun in CINAHL, PsycInfo and PubMed on 31 January 2023. An additional hand search of the reference lists of the identified articles was performed. RESULTS: Two authors independently assessed the titles and abstracts of 3827 scientific papers. As a result, 89 full texts were reviewed and 20 articles plus one review were included in the review. Five major themes were identified: (1) LD as a barrier to caregiving, (2) communication difficulties and the role of video and telephone calls, (3) the burdens and benefits of LD caregiving, (4) interaction and conflict with local caregivers and (5) LD caregivers' wishes and needs for support. CONCLUSIONS: Further quantitative and mixed-methods studies should be undertaken to improve our understanding of LD caregiving for relatives at the end of life. Studies to explore the feasibility and implementation of communication technologies in end-of-life LD caregiving are also needed.

'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. Sixty-five patients (dyad 1: 19; dyad 2: 46) and 42 family caregivers (dyad 1: 13; dyad 2: 29) participated in the study (02/2018-11/2019). Results show that ill adult children felt less (well) supported than ill parents. Parent caregivers were often limited in the support they could provide, due to their age and health conditions. Hypotheses were deduced from patients' and family caregivers' notions to inform dyad-specific recommendations for support interventions.

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. In the German context, research is lacking on the specific experiences and needs of caregivers in end-of-life situations who are geographically distanced from their relative. Thus, the overarching goal of the proposed study is to detail the specifics of long-distance caregiving at the end of life in Germany, determining the role played by physical distance in shaping end-of-life caregiving and identifying the needs of long-distance caregivers in this situation. METHODS: The exploratory qualitative study will be guided by an inductive logic, drawing on one-time semi-structured interviews. To uncover the multiplicity of caregiving experiences, long-distance caregivers of both patients receiving early palliative care and patients at a very advanced stage of disease will be included. The study will be divided into five phases: (1) preparation and pretest, (2) data collection and primary analysis, (3) data analysis and interpretation, (4) advisory board workshop and (5) conclusions and recommendations. DISCUSSION: The study will aim at generating valuable insight regarding the experiences and needs of family caregivers of end-of-life patients. This is particularly relevant, given that families are becoming increasingly geographically dispersed. As this trend continues, it will challenge traditional models of family care and shed light on novel caregiving issues that will need to be addressed through social and health policy. TRIAL REGISTRATION: The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00024164; date of registration: January 25, 2021), and is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.

'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. PARTICIPANTS: Patients and caregivers were recruited (Feb. 2018 - Nov. 2019) via general and specialist palliative care providers in Germany. METHODS: The study combined semi-structured interviews with quantitative questionnaires covering socio-demographic details, attachment style and emotional intimacy. FINDINGS: A total of 65 patients and 42 family caregivers participated in the study. Interview data indicate that illness situation and dependencies were perceived in both dyads to represent a relationship role reversal contrary to the 'natural order'. With respect to dyad 1, adult children stressed their need for autonomy, whereas caregiving parents strived for greater intimacy in the relationship. Within dyad 2, terminally ill parents and adult children experienced a new relationship intensity. Questionnaire data showed that emotional intimacy was perceived by patients in both dyads and adult child caregivers as significantly higher in the current illness situation compared to the pre-illness situation. CONCLUSIONS: This was the first study to contribute to an understanding of the different needs of terminally ill adult children/parents and their parent/adult child caregivers, thus contributing to an understanding of the different needs of these parties, both within and between the dyadic forms. The results suggest that the dyads share similar themes, which should be integrated into general support interventions; however, some themes appear more relevant for one dyad, only. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: For both dyads, we recommend psychological counseling to support open communication and understanding between parties.

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. METHODS: Recommendations were formulated from qualitative interview data on the experiences and wishes of patients and family caregivers within these two dyads. Experts from palliative and hospice care providers rated the relevance and feasibility of 21 recommendations on two 4-point Likert-type scales, respectively. Additional suggestions for improvement were captured via free text fields. Individual items were considered consented when ≥ 80% of participants scored 1 (strongly agree) or 2 (somewhat agree) regarding both relevance and feasibility. RESULTS: A total of 27 experts (35% response rate) completed two Delphi rounds. Following the first round, 13 recommendations were adjusted according to participants' comments. After the second round, consensus was achieved for all 21 of the initially presented recommendations. CONCLUSION: The Delphi-consented recommendations for parents and adult children at the end of life provide the first guidance for hands-on dyadic psychosocial support measures for parent-adult child relationships, specifically. The next step could involve the structured implementation of the recommendations, accompanied by scientific research. This study was registered on October 27, 2017, with the German Clinical Trials Register (DRKS00013206).

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. A secondary aim was to disclose research gaps and present recommendations for clinical practice and future research. DESIGN: The scoping review followed the methodological framework of Arksey and O'Malley. The analysed publications included studies of varying kinds to describe the current state of the art. DATA SOURCES: Using a highly sensitive search strategy, the authors searched PubMed, Web of Science Core Collection, CINAHL and Google Scholar within the publication window of inception to 12 June 2020. An additional hand search of the reference lists of the identified review articles was conducted. RESULTS: The authors screened the titles and abstracts of 2643 studies, retrieved 197 full texts and included 32 articles in the review. The review identified nine major themes: (1) the referral process, (2) models of care, (3) patient characteristics, (4) demand, (5) the discharge process, (6) perceptions of services, (7) funding and costs, (8) outcome measurement and (9) education. CONCLUSIONS: There is a need for further research to identify groups of patients who would receive the most benefit from palliative and hospice day-care and to determine any necessary revisions in admission criteria.

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. METHODS: The research is a multi-perspective, prospective, observational study following a mixed-methods approach across three study phases. In phase 1a, qualitative expert interviews will be conducted to capture the facility-related characteristics of palliative day-care clinics and day hospices in Germany; the results will feed into a questionnaire sent to all such institutions identified nationwide. In phase 1b, a questionnaire will be sent to local statutory health insurance providers, to gain insight into their contracts and accounting and remuneration models. In phase 2a, a service preference survey will be conducted with patients and family caregivers. In phase 2b, semi-structured interviews with management staff will explore the factors that promote and hinder the provision of service. In phase 2c, the external perspective will be surveyed via focus groups with local actors involved in hospice and palliative care. In phase 3a, focus groups with representatives from relevant areas will be conducted to develop recommendations. Finally, in phase 3b, recommendations will be agreed upon through a Delphi survey. DISCUSSION: The empirically developed recommendations should enable the establishment and development of day hospices and palliative day-care clinics in Germany to be better managed, more oriented to actual demand, and more effectively integrated into wider health care services. Importantly, the findings are expected to optimize the overall development of hospice and palliative care services. TRIAL REGISTRATION: The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00021446; date of registration: April 20, 2020). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.

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. METHODS: As part of the research project Dy@EoL on parent-adult child interactions, this mixed-methods study combined qualitative interviews and the Berlin Social Support Scales self-report questionnaire. Participants in both dyads were recruited via 12 inpatient and ambulatory palliative/hospice care providers between February 2018 and September 2019. RESULTS: Participants included 65 patients (dyad 1: 19; dyad 2: 46) and 42 family members (dyad 1: 13; dyad 2: 29). Qualitative interviews revealed communication changes in the terminal illness situation and provided insight into each dyad partner's perception of openness and avoidance in the dyadic communication. The quantitative results showed that patients in both dyads provided significantly less informational support relative to family members. A strong similarity present in both dyads was the central motivation for limiting information sharing. CONCLUSIONS: Individual preferences for information sharing suggest that the divergent needs of dyad partners must be carefully negotiated to ensure that patients are able to address important topics without putting too great an emotional burden on their family members. Tailored psychosocial support measures are needed to achieve this goal. The study was registered prospectively in the German Clinical Trials Register (registration N° DRKS00013206).

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. METHODS: Between February 2018 and November 2019, the research team cooperated with diverse inpatient and ambulatory palliative and hospice care providers to recruit both dyads. Cooperation strategies and adaptations were protocolled. Data on (non-)participation were recorded and analyzed using descriptive statistics. RESULTS: The recruitment rate was 34.6% (dyad 1, terminally ill adult children with parents: 36.4%; dyad 2, terminally ill parents with adult children: 33.9%). In total, 82.2% of participants were recruited from inpatient settings. The research team has applied various strategies, such as public outreach activities and the extension of recruitment partners. The study protocol was adapted at an early stage to include single participants. Of all patients, 47.7% participated without their dyad partner. The main reason to exclude their family member was the patients' wish to protect them from extraburden. CONCLUSION: The recruitment was more successful in inpatient than in ambulatory settings. The extension of recruitment partners was beneficial to recruit participants from ambulatory contexts. The inclusion of single participants was conducive as a great number of patients participated without their dyad partner. Sharing the obtained experiences can be helpful for future research planning.

[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]. / Hausärztliche Begleitung in der letzten Lebensphase (HA-BeL): Systematische Entwicklung und Anpassung der deutschsprachigen Version des 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. The process was completed by a back translation, a first pre-test and a feasibility study with general practitioners. RESULTS: Nine of the ten general practitioners invited took part in the pre-test (56 % female, median age 55 years, range 40-75). The pre-test showed a median processing time of 15minutes. 17 general practitioners (59 % female, median age 53 years, range 39-69) took part in the pilot study. Adaptation to the German context was necessary for two of the 25 items. In the pre-test and in the pilot study only single values were missing. With the exception of the two adapted items, the back translation showed a high level of consistency with the original version of the questionnaire. DISCUSSION: The systematic development and testing of the questionnaire "Hausärztliche Begleitung in der letzten Lebensphase" (HA-BeL) as well as its adaptation for the primary care setting in Germany was successfully completed in a multi-stage process using an interdisciplinary and participatory approach. The results of this empirical testing provide guidance for expenditure and reasonableness, objectivity of application and content-related consistency of the HA-BeL index. CONCLUSION: The HA-BeL index is the first self-assessment instrument to be used by general practitioners to evaluate practice and organisation of palliative care in general practice in Germany.

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. Research gaps in the existing literature are disclosed and recommendations for future research are presented. DESIGN: A type 4 scoping review according to Arksey and O'Malley's (2005) methodological framework was conducted. The review includes studies regardless of study design and provides a descriptive account of foci of available research. DATA SOURCES: The PubMed, PsycINFO, CINAHL, Google Scholar and Web of Science databases were searched from inception to 16 August 2018. An additional hand search was conducted. A highly sensitive search strategy was employed to cover all potentially relevant results. RESULTS: The authors screened 1832 records by title and abstract, retrieved 216 full-text articles and included 15 studies from the database search. One study was identified by way of hand search. The review identified six major themes: (1) adult child-parent relationship, (2) adult child-parent communication, (3) involvement in caregiving, (4) benefit and burden of caregiving, (5) coping strategies and (6) support and information for caregivers. CONCLUSIONS: The scoping review accentuates the paucity of studies that address both patients' and their parent/adult child caregivers' relationship, interaction and psychosocial support needs.

'. . . 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. Data analysis was performed according to Grounded Theory and qualitative and quantitative results were interrelated. SETTING/PARTICIPANTS: Between March 2014 and September 2015 at two hospitals adult patients diagnosed with multidrug-resistant bacterial microorganisms and treated in a palliative care department or a geriatric ward were included in the sample group. RESULTS: Patients in end-of-life and geriatric care reported emotional and social impact through multidrug-resistant bacterial microorganisms' diagnosis itself, hygiene measures and lack of information. This impact affects aspects relevant to the patients' quality of life. Patients' wishes for comprehensive communication/information and reduction of social strain were identified from the focus group discussion. CONCLUSION: Patients would benefit from comprehensible information on multidrug-resistant bacterial microorganisms. Strategies minimizing social exclusion and emotional impact of multidrug-resistant bacterial microorganisms' diagnosis in end-of-life care are needed as well as adaption or supplementation of standard multidrug-resistant bacterial microorganisms' policies of hospitals.

Development of empirical recommendations for regional hospice and palliative care networks in Germany: A qualitative study.

BACKGROUND: Internationally, efforts are underway to develop coordinated and standardized approaches for palliative care service delivery by improving service quality in hospice and palliative care networks. German legal regulations explicitly demand networking between hospice and palliative care providers. However, there is little research on models of cooperation and the building and development of hospice and palliative care networks. Research-based recommendations for network building and advancement are lacking. OBJECTIVE: The study aim was to develop empirical recommendations for the building of new and advancement of existing hospice and palliative care networks in Bavaria, Germany. METHODS: The project utilized a qualitative approach. The research project was structured in six sequential phases: 1) semi-structured individual interviews on status quo of networks, 2) a workshop including a focus group to develop definitions of key terms and prioritize major network themes, 3) semi-structured face-to-face interviews on factors enabling and inhibiting cooperation, 4) drafting of a recommendation for regional hospice and palliative care networks, 5) an online consensus survey questionnaire to rate relevance and feasibility of the draft recommendation and an internal consensus meeting to revise the draft, and 6) an expert workshop to develop examples of realization. Coordinators and chairpersons of 12 hospice and palliative care networks constitute the study population for study phases 1 to 3, 5, and 6. Network representatives partook in one (n=6), two (n=6), three (n=4), four (n=2), or all five (n=1) of the study phases 1, 2, 3, 5, and 6. Further experts participated in one (n=10) or both (n=1) of the phases 5 and 6. RESULTS: Recommendations were drafted for six thematic fields: (i) missions and aims, (ii) roles and responsibilities, (iii) coordination, (iv) communication and information channels, (v) public visibility, and (vi) funding. The whole set of recommendations was rated by 90% of the participants to be fully or somewhat important for network building and development. A total of 22 recommendations was approved. CONCLUSIONS: The call for establishing and developing standards for hospice and palliative care networks was situated within the current policy climate of Germany and the broader international community. The present recommendations can aid implementation of this request and have a strong relevance for practice.

Perspectives on multidrug-resistant organisms at the end of life : A focus group study of staff members and institutional stakeholders.

BACKGROUND: There is a lack of research into how hospital staff and institutional stakeholders (i. e. institutional representatives from public health authorities, hospital hygiene, and the departments of microbiology, palliative care, and geriatrics) engage with patients who are carriers of multidrug-resistant organisms and receiving end-of-life care. Knowledge of their experiences, workload, and needs should be considered in dealing with hospitalized carriers of multidrug-resistant organisms as well as staff education. OBJECTIVE: This study explored and compared staff members' and stakeholders' perspectives on multidrug-resistant organisms and on provision of end-of-life care to carrier patients. METHODS: In this study four focus groups consisting of hospital staff members and institutional stakeholders were formed within a mixed-methods parent study in a palliative care unit at a university clinic and a geriatric ward of a Catholic and academic teaching hospital. Participants discussed results from staff and stakeholder interviews from a former study phase. Data were analyzed according to Grounded Theory and perspectives of staff members and institutional stakeholders were compared and contrasted. RESULTS: Key issues debated by staff members (N = 19) and institutional stakeholders (N = 10) were 1) the additional workload, 2) reasons for uncertainty about handling carrier patients, 3) the format of continuing education, and 4) the preferred management approach for dealing with multidrug-resistant organism carrier patients. Although similar barriers (e. g. colleagues' ambiguous opinions) were identified, both groups drew different conclusions concerning the management of these barriers. While institutional stakeholders recommended making decisions on hygiene measures under consideration of the specific patient situation, staff members preferred the use of standardized hygiene measures which should be applied uniformly to all patients. DISCUSSION: Staff members and institutional stakeholders perceived similar barriers to practice caused by multidrug-resistant organisms and similar needs for continuing education. The staff members' preferred management approach might originate from an uncertainty about the multidrug-resistant organism infection risk. Experiences and visions of both groups should be included in a specific recommendation for end-of-life care to ensure behavioral confidence.

Staff members' ambivalence on caring for patients with multidrug-resistant bacteria at their end of life: A qualitative study.

AIMS AND OBJECTIVES: To explore healthcare professionals' personal experiences, feelings and attitudes about caring for hospitalised patients with multidrug-resistant bacteria in palliative and geriatric care. BACKGROUND: Working in end-of-life care involves at times burdening demands that affect not only healthcare professionals personally but also their actions. It is suggested that multidrug-resistant bacteria and their consequences for colonised or infected patients in hospitals are among the challenges for all professionals in end-of-life care. Little is known about the feelings and experiences of staff members during healthcare activities with regard to these bacteria. DESIGN: A qualitative interview study in two German hospitals. METHODS: We interviewed 35 staff members from a German palliative care unit and a geriatric unit about their experiences with multidrug-resistant bacteria in end-of-life care and the management of colonised or infected patients. Semistructured interviews were transcribed verbatim and analysed using grounded theory. RESULTS: Interviewees represented two interdisciplinary teams with 40% nurses, 26% physicians and 34% other professionals. Salient themes that were identified included impact of multidrug-resistant bacteria on staff members' personal actions, feelings and attitudes towards the bacteria and the required isolation measures. Besides higher workload and consequences for working routines, the patients' palliative care needs were recognised, as well as the necessary protection measures to avoid contaminations in hospital. Healthcare professionals reported a dilemma that they experienced when facing these diverse demands. CONCLUSIONS: Findings point to emotional and behavioural ambivalence in end-of-life care among staff members because necessary isolation measures and particular situation in end-of-life care create unsolvable conflicts for healthcare professionals. Possible strategies to cope with ambivalence are discussed. RELEVANCE TO CLINICAL PRACTICE: Healthcare professionals in palliative and geriatric care have to deal with multidrug-resistant bacteria and have to face contradictory feelings while trying to fulfil patients' needs as well as isolation requirements.