Sonja Bussmann

Improving End-of-Life Care in Hospitals: A Qualitative Analysis of Bereaved Families’ Experiences and Suggestions

Objectives: To explore and document the experiences and expectancies of bereaved family members concerning the end-of-life (EOL) care of their deceased relative in a general hospital setting. Methods: Cross-sectional study using a questionnaire that included open-ended questions. Free-text answers were evaluated with qualitative content analysis. A total of 270 family members provided information about improvements in inpatient care. Results: Families described structural deficiencies. Furthermore, they requested a more holistic patient health care beyond medical treatment and expressed the wish for more professional support for families. Discussion: The view of bereaved families confirmed the need for improvement in general hospital EOL care. The results underline the importance of a more holistic EOL care. The application of communication skills training, structured family meetings, and integrated pathways is recommended.

Support for families of patients dying with dementia: A qualitative analysis of bereaved family members' experiences and suggestions

OBJECTIVE To explore and document the needs of family caregivers of patients dying with dementia and to identify how healthcare professionals can adequately support them. METHOD We employed a cross-sectional survey containing open-ended questions that were analyzed using qualitative methods. RESULTS Receiving information about the diagnosis and disease trajectory of dementia is essential for the caregiving families of people dying with the disease. However, at present the communication of information offered by professionals is not experienced as satisfying. Further aspects that require improvement concern issues related to time constraints, as well as practical and emotional support from professionals in the care setting. Family members would also like professionals to better assist them during and after the dying process. SIGNIFICANCE OF RESULTS Family members face multiple burdens while caring for their demented relatives and need more professional support during the course of the disease trajectory as well as in the terminal phase.

End-of-life care research with bereaved informal caregivers – analysis of recruitment strategy and participation rate from a multi-centre validation study

BackgroundOne essential element of research is the successful recruitment of participants. However, concerns are obvious regarding the ethical implications of involving terminally ill and even dying patients and their informal caregivers as research participants. This study aims to illustrate central issues encountered when recruiting bereaved informal caregivers for a questionnaire validation study on the quality of dying and death.MethodsBetween July 2012 and November 2013, informal caregivers of deceased inpatients who were treated at two palliative care units in Germany were invited to participate in a questionnaire validation study. Informal caregivers were called by a trained researcher at the end of the fourth week after death at the earliest and by the sixteenth week after death at the latest and asked to participate in a face-to-face interview in their private home.ResultsThe overall participation rate of all eligible informal caregivers was 76.1% (226/297). The mean burden score was 2.5 (NRS from 0 = no burden to 10 = maximum burden; n = 221). Higher burden scores (≥4) were associated with emotional and burdensome memories (n = 34) being invoked throughout the interview. Severe or maximum burden scores (≥7) were stated by 13.2% of participants. The average time between the associated patient’s death and the informal caregiver’s interview was 57.3 days (range 26–176 days, median 49.5 days). 5.3% of all 226 interviews were not completed due to different reasons. Participants’ comments on the way in which the study was conducted gave insight into their motivation to take part in the study and their evaluation of the interview situation.ConclusionsThe recruitment strategy can be recommended to other researchers developing research with bereaved carers. The burden caused by study participation was acceptable to the researchers carrying out this research, although a small group of participants experienced high levels of burden which should be anticipated and appropriate support services offered. Family caregivers are willing to support end-of-life care research, have different motivations for participation and even reported benefits from participation. Nevertheless, study designs have to take into account and ease the potential burden of interviews for caregivers experiencing grief.

Validation of the German Version of the Quality of Dying and Death Questionnaire for Health Professionals.

Purpose: To validate the Quality of Dying and Death (QoDD) instrument for health professionals (QoDD-D-MA) and to test its feasibility in 2 German palliative care units (PCUs). Methods: The QoDD was translated from English to German and then retranslated following European Organisation for Research and Treatment of Cancer (EORTC) guidelines. Data were collected in 2 German PCUs to calculate aspects of validity and reliability. Results: Mean total score was 83.05 (range 49-100; N = 232). The QoDD-D-MA showed satisfactory psychometric properties, Cronbach α = .830; interrater reliability r = .245 (P < .01). The QoDD-D-MA was independent of patients’ demographic and clinical aspects. Some challenges occurred when applying the instrument. Conclusions: Feasibility could be improved by adapting the QoDD-D-MA to create a self-assessment version and finding a solution for items that result in many missing data. Future research should validate the QoDD-D-MA in other care settings.

Interference Between Family Caregivers’ Mental Disorders and Their Estimates of Quality of Dying and Death (QODD) of Their Loved Ones

Background: In studies enrolling informal caregivers of patients in palliative care, it is necessary to ensure that findings are not influenced by factors such as mental disorders. Aim: This study aims to describe the influence of anxiety and depression on bereaved informal caregivers’ retrospective ratings of the quality of dying and death (QoDD) of their loved ones. Design: Informal caregivers of deceased patients from 2 German palliative care (PC) units took part in a validation study of the German version of the original QoDD-Deutsch-Angehörige (QoDD-D-Ang) during the fourth week following the patient’s death at the earliest. Depressive and panic disorders were assessed via the Patient Health Questionnaire (PHQ). Group comparisons (χ2, t test; significance level P < .05) analyzed whether informal caregivers with depression or panic disorders and those without such disorders differ in their estimates. Results: A total of 226 informal caregivers participated between August 2012 and December 2013. The mean age of participants was 55.5 years; 61.1% were female. The PHQ of 221 participants resulted in 8.6% with major disorders, 13.6% with other depressive syndromes, and 77.8% without depressive disorders. In this secondary data analysis here, there was no difference between female and male participants concerning the incidence of depression (P = .519, χ2). Two participants screened positive for both panic and major depressive disorders. Both groups presented no significant differences in the mean total QoDD-D-Ang scores (P = .343). Conclusion: Informal caregivers’ estimates on the QoDD-D-Ang of their significant others do not interfere with mental disorders. Therefore, bereaved informal caregivers are able to participate in the PC research after a few weeks following the loss of a loved one.