Zur Soziologisierung in der Hospizbewegung: Erfahrungen aus einem thanatosoziologischen Gründungsprojekt

Die Autorin hat sich Anfang 2008 als Dozentin selbstständig gemacht und bietet seitdem Hospizeinrichtungen Bildungsveranstaltungen zur soziologischen Perspektive auf den Tod an. Der Beitrag liefert nun eine Reflexion über die bisherigen Praxiserfahrungen: Es wird aufgezeigt, wie die Gründung angelegt ist, worum es in den Bildungsveranstaltungen geht und wie das Anliegen, den Diskurs zu Tod und Gesellschaft anzuregen, von Hospizen aufgenommen wird. Ferner werden der Weg in die Existenzgründung, damit verbundene Entscheidungsprozesse und die Unterstützung durch ein Gründungszentrum skizziert. Denn gerade für Soziologen bedeutet der Schritt in die Selbstständigkeit eine Herausforderung durch ökonomische Denkzusammenhänge, und entsprechend hilfreich ist daher die professionelle Begleitung in die Gründungsphase. (ICG2

Feasibility, acceptability and adaption of dignity therapy : a mixed methods study achieving 360° feedback

Background Dignity Therapy (DT) is a short-term intervention to reduce psychological suffering in end-of-life care. Its strength lies in evidenced-based development and investigation. The aim of the present study is to investigate the feasibility of DT at German palliative care units (PCU), as well as the acceptability and adaption of a German version of the DT question protocol (DTQP). Method A clinical multicentre mixed methods study, whereby patients and relatives provided quantitative (feedback questionnaires) and qualitative (cognitive interviews) data on the DT intervention. Before using the DTQP on patients, healthcare professionals (HCP) were invited to participate in cognitive interviews to provide input on DT. Therefore 360° feedback was achieved. Finally, the conducted DT interviews were examined. The study took place at two German PCUs (Mainz and Würzburg). Participating HCPs were physicians, psychologists, nurses and chaplains. Patients admitted to the PCUs were eligible to participate if they had a terminal illness and a life expectancy ranging from 2 weeks to 12 months. Results: Out of 410 admitted patients, 72 were eligible and 30 (7.3% of all patients and 41.7% of eligible patients) participated. On average, 9 questions from the DTQP were used per DT interview. Subsequent cognitive interviews with patients produced four main categories of feedback (on the title, the question protocol, wording, and the questions actually asked). Finally, of the 30 participants, 19 completed the feedback questionnaire, as did 26 relatives. Of those, 18 patients and 24 relatives evaluated DT as helpful. Conclusions DT is feasible for German PCUs. Our research yielded a validated German translation of the DTQP following EORTC guidelines and findings were reported according to the COREQ checklist for qualitative design

The quality of care of the dying in hospital—next-of-kin perspectives

Abstract Purpose Providing high-quality care for the dying is essential in palliative care. Quality of care can be checked, compared, and improved by assessing responses from bereaved next-of-kin. The objectives of this study are to examine quality of care in the last 2 days of life of hospitalized patients considering specific aspects of their place of care. Methods The “Care of the Dying Evaluation” (CODE™) questionnaire, validated in German in 2018 (CODE-GER), examines quality of care for the patient and support of next-of-kin, allocating values between 0 (low quality) and 4 (high quality). The total score (0–104) is divided into subscales which indicate support/time given by doctors/nurses, spiritual/emotional support, information/decision-making, environment, information about the dying process, symptoms, and support at the actual time of death/afterwards. Next-of-kin of patients with an expected death in specialized palliative care units and other wards in two university hospitals between April 2016 and March 2017 were included. Results Most of the 237 analyzed CODE-GER questionnaires were completed by the patient’s spouse (42.6%) or children (40.5%) and 64.1% were female. Patients stayed in hospital for an average of 13.7 days (3–276; SD 21.1). Half of the patients died in a specialized palliative care unit (50.6%). The CODE-GER total score was 85.7 (SD 14.17; 25–104). Subscales were rated significantly better for palliative care units than for other wards. Unsatisfying outcomes were reported in both groups in the subscales for information/decision-making and information about the dying process. Conclusion The overall quality of care for the dying was rated to be good. Improvements of information about the dying process and decision-making are needed. Trial registration DRKS0001391

Family members of deceased palliative care patients receiving bereavement anniversary cards: a survey on the recipient’s reactions and opinions

Abstract Background Bereavement support is part of palliative care. Sending out bereavement anniversary cards is one intervention of follow-up support for the bereaved. This study evaluated the suitability of bereavement anniversary cards as an appropriate method in bereavement care. Methods A questionnaire was sent to each card recipient since the starting point of this practice (October 2014-June 2015). Data was analyzed descriptively. Results 24 of 68 deliverable questionnaires were returned (response rate 35%). 22 out of 24 recipients felt pleased receiving the card. No participant felt annoyed on receiving the bereavement anniversary card; every participant agreed to at least one positive reaction (i.e. pleased, grateful or consoled). Conclusions The participants’ reactions and opinions about receiving the anniversary card were decidedly positive and indicate the continuation of this practice. Those few less pleased reactions may be related to timing and the first anniversary of the patients’ death and therefore an expression of grief rather than a dissatisfaction with bereavement anniversary cards, as such

Feasibility, acceptability and adaption of dignity therapy: a mixed methods study achieving 360° feedback

Abstract Background Dignity Therapy (DT) is a short-term intervention to reduce psychological suffering in end-of-life care. Its strength lies in evidenced-based development and investigation. The aim of the present study is to investigate the feasibility of DT at German palliative care units (PCU), as well as the acceptability and adaption of a German version of the DT question protocol (DTQP). Method A clinical multicentre mixed methods study, whereby patients and relatives provided quantitative (feedback questionnaires) and qualitative (cognitive interviews) data on the DT intervention. Before using the DTQP on patients, healthcare professionals (HCP) were invited to participate in cognitive interviews to provide input on DT. Therefore 360° feedback was achieved. Finally, the conducted DT interviews were examined. The study took place at two German PCUs (Mainz and Würzburg). Participating HCPs were physicians, psychologists, nurses and chaplains. Patients admitted to the PCUs were eligible to participate if they had a terminal illness and a life expectancy ranging from 2 weeks to 12 months. Results: Out of 410 admitted patients, 72 were eligible and 30 (7.3% of all patients and 41.7% of eligible patients) participated. On average, 9 questions from the DTQP were used per DT interview. Subsequent cognitive interviews with patients produced four main categories of feedback (on the title, the question protocol, wording, and the questions actually asked). Finally, of the 30 participants, 19 completed the feedback questionnaire, as did 26 relatives. Of those, 18 patients and 24 relatives evaluated DT as helpful. Conclusions DT is feasible for German PCUs. Our research yielded a validated German translation of the DTQP following EORTC guidelines and findings were reported according to the COREQ checklist for qualitative design. Trial registration. The study was registered retrospectively on the 22nd of December 2017 at the German Clinical Trials Register (DRKS00013627)

The quality of care of the dying in hospital—next-of-kin perspectives

Purpose!#!Providing high-quality care for the dying is essential in palliative care. Quality of care can be checked, compared, and improved by assessing responses from bereaved next-of-kin. The objectives of this study are to examine quality of care in the last 2 days of life of hospitalized patients considering specific aspects of their place of care.!##!Methods!#!The 'Care of the Dying Evaluation' (CODE!##!Results!#!Most of the 237 analyzed CODE-GER questionnaires were completed by the patient's spouse (42.6%) or children (40.5%) and 64.1% were female. Patients stayed in hospital for an average of 13.7 days (3-276; SD 21.1). Half of the patients died in a specialized palliative care unit (50.6%). The CODE-GER total score was 85.7 (SD 14.17; 25-104). Subscales were rated significantly better for palliative care units than for other wards. Unsatisfying outcomes were reported in both groups in the subscales for information/decision-making and information about the dying process.!##!Conclusion!#!The overall quality of care for the dying was rated to be good. Improvements of information about the dying process and decision-making are needed.!##!Trial registration!#!DRKS00013916

Assessment of the quality of end-of-life care: translation and validation of the German version of the “Care of the Dying Evaluation” (CODE-GER) - a questionnaire for bereaved relatives

Background!#!International studies indicate deficits in end-of-life care that can lead to distress for patients and their next-of-kin. The aim of the study was to translate and validate the 'Care of the Dying Evaluation' (CODE) into German (CODE-GER).!##!Methods!#!Translation according to EORTC (European Organisation for Research and Treatment of Cancer) guidelines was followed by data collection to evaluate psychometric properties of CODE-GER. Participants were next-of-kin of patients who had died an expected death in two hospitals. They were invited to participate at least eight, but not later than 16 weeks after the patient's death. To calculate construct validity, the Palliative care Outcome Scale (POS) was assessed. Difficulty and perceived strain of answering the questionnaire were assessed by a numeric scale (0-10).!##!Results!#!Out of 1137 next-of-kin eligible, 317 completed the questionnaire (response rate: 27.9%). Data from 237 main sample participants, 38 interraters and 55 next-of-kin who participated for repeated measurement were analysed. Overall internal consistency, α = 0.86, interrater reliability, ICC (1) = 0.79, and retest-reliability, ICC (1, 2) = 0.85, were good. Convergent validity between POS and CODE-GER, r = -.46, was satisfactory. A principal component analysis with varimax rotation showed a 7-factor solution. Difficulty, M = 2.2; SD ± 2.4, and perceived strain, M = 4.1; SD ± 3.0, of completing the questionnaire were rather low.!##!Conclusion!#!The results from the present study confirm CODE-GER as a reliable and valid instrument to assess the quality of care of the dying person. More over our study adds value to the original questionnaire by proposing a deepened analysis of obtained data. The development of seven subscales increases its potential for further surveys and research.!##!Trial registration!#!This study was registered retrospectively on the 25th of January 2018 at the German Clinical Trials Register ( DRKS00013916 )

Additional file 5: of Feasibility, acceptability and adaption of dignity therapy: a mixed methods study achieving 360° feedback

German version of the Dignity Therapy Question Protocol. (DOC 24 kb

Additional file 4: of Feasibility, acceptability and adaption of dignity therapy: a mixed methods study achieving 360° feedback

DT Family feedback questionnaire. (DOC 95 kb

Additional file 3: of Feasibility, acceptability and adaption of dignity therapy: a mixed methods study achieving 360° feedback

DT Patient feedback questionnaire. (DOC 99 kb