Die Rolle von Expertenbeiräten in der Palliativforschung

Herbst, Franziska A.; Schneider, Nils; Stiel, Stephanie

doi:10.1055/a-0666-9881

Cited by 8 publications

(10 citation statements)

References 10 publications

(7 reference statements)

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“…The board will enhance the relevance, quality and acceptance of the research project by co-shaping the project and advising on the prioritization of the results [ 66 ]. It will operate via three in-person meetings (project months 4, 8 and 21, respectively) and one Delphi study (project month 23).…”

Section: Methods and Designmentioning

confidence: 99%

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

2022

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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.

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Section: Methods and Designmentioning

confidence: 99%

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

2022

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“…Nearly 37% of all deaths took place in hospitals, which is the most common place of death in our care receiving cohort as well as in the total German population [20][21][22] and in those of most other countries [23][24][25].…”

Section: Actual Place Of Deathmentioning

confidence: 99%

“…After the hospital, the own home was found as the second most common place of death with 26.6%, which was also found by Dasch certificates from 2007 and from 2017. They showed that while in 2007 home also was the second most frequent place of death (26.1%), it slid to third place in 2017 with 19.8% [20]. Taking results of published studies together, the likelihood to die at home has been decreasing since recent years [20,22,26].…”

Section: Actual Place Of Deathmentioning

confidence: 99%

Characteristics and place of death in home care recipients in Germany – an analysis of nationwide health insurance claims data

et al. 2022

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Background Most care-dependent people live at home, where they also would prefer to die. Unfortunately, this wish is often not fulfilled. This study aims to investigate place of death of home care recipients, taking characteristics and changes in care settings into account. Methods We retrospectively analysed a cohort of all home-care receiving people of a German statutory health insurance who were at least 65 years and who deceased between January 2016 and June 2019. Next to the care need, duration of care, age, sex, and disease, care setting at death and place of death were considered. We examined the characteristics by place of care, the proportion of dying in hospital by care setting and characterised the deceased cohort stratified by their actual place of death. Results Of 46,207 care-dependent people initially receiving home care, 57.5% died within 3.5 years (n = 26,590; mean age: 86.8; 66.6% female). More than half of those moved to another care setting before death with long-term nursing home care (32.3%) and short-term nursing home care (11.7%) being the most frequent transitions, while 48.1% were still cared for at home. Overall, 36.9% died in hospital and in-hospital deaths were found most often in those still receiving home care (44.7%) as well as care in semi-residential arrangements (43.9%) at the time of death. People who died in hospital were younger (mean age: 85.5 years) and with lower care dependency (low care need: 28.2%) as in all other analysed care settings. Conclusion In Germany, changes in care settings before death occur often. The proportion of in-hospital death is particularly high in the home setting and in semi-residential arrangements. These settings should be considered in interventions aiming to decrease the number of unwished care transitions and hospitalisations at the end of life.

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“…Prior to data collection, an interview guide was developed by the project team members (FAH, SSt) and scrutinized in a first meeting of the project's scientific advisory board (January 2018). 24,25 The interview was designed to elicit participants' experiences and needs regarding their relationship and relationship roles within the dyad; it was also designed to encourage participants to freely provide their perspectives. 26,27 Interviews were conducted by a trained researcher (FAH, LG) in the patient's room; in one of the recruitment centers (e.g.…”

Section: Data Collection and Instrumentsmentioning

confidence: 99%

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

Herbst

Gawinski

Schneider

et al. 2021

Journal of Psychosocial Oncology

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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.

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Die Rolle von Expertenbeiräten in der Palliativforschung

Cited by 8 publications

References 10 publications

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

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

Characteristics and place of death in home care recipients in Germany – an analysis of nationwide health insurance claims data

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

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