RESEARCH ARTICLE Open Access

Burdens, resources, health and wellbeing of nurses working in general and specialised palliative care in Germany – results of a nationwide cross-sectional survey study Elisabeth Diehl1* , Sandra Rieger1, Stephan Letzel1, Anja Schablon2, Albert Nienhaus2,3, Luis Carlos Escobar Pinzon1,4† and Pavel Dietz1†

Abstract

Background: Palliative care in Germany is divided into general (GPC) and specialised palliative care (SPC). Although palliative care will become more important in the care sector in future, there is a large knowledge gab, especially with regard to GPC. The aim of this study was to identify and compare the burdens, resources, health and wellbeing of nurses working in GPC and SPC. Such information will be helpful for developing prevention programs in order to reduce burdens and to strengthen resources of nurses.

Methods: In 2017, a nationwide cross-sectional survey was conducted. In total, 437 nurses in GPC and 1316 nurses in SPC completed a questionnaire containing parts of standardised instruments, which included parts of the Copenhagen Psychosocial Questionnaire (COPSOQ), the Patient Health Questionnaire (PHQ-2), the Resilience Scale (RS-13) Questionnaire, a single question about back pain from the health survey conducted by the Robert Koch Institute as well as self-developed questions. The differences in the variables between GPC and SPC nurses were compared.

Results: SPC nurses reported higher emotional demands as well as higher burdens due to nursing care and the care of relatives while GPC nurses stated higher quantitative demands, i.e. higher workload. SPC nurses more often reported organisational and social resources that were helpful in dealing with the demands of their work. Regarding health, GPC nurses stated a poorer health status and reported chronic back pain as well as a major depressive disorder more frequently than SPC nurses. Furthermore, GPC nurses reported a higher intention to leave the profession compared to SPC nurses.

© The Author(s). 2021 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

* Correspondence: [email protected] †Escobar Pinzon Luis Carlos and Dietz Pavel are authors contributed equally and shared senior authorship. 1Institute of Occupational, Social and Environmental Medicine, University Medical Center of the Johannes Gutenberg University Mainz, Obere Zahlbacher Str. 67, 55131 Mainz, Germany Full list of author information is available at the end of the article

Diehl et al. BMC Nursing (2021) 20:162 https://doi.org/10.1186/s12912-021-00687-z

Conclusions: The findings of the present study indicate that SPC could be reviewed as the best practice example for nursing care in Germany. The results may be used for developing target group specific prevention programs for improving health and wellbeing of nurses taking the differences between GPC and SPC into account. Finally, interventional and longitudinal studies should be conducted in future to determine causality in the relationship of burdens, resources, health and wellbeing.

Keywords: Stress, Strain, Burnout, Depression, Intention to leave the profession, Prevention

Background Due to demographic changes, western European soci- eties are faced with numerous challenges and changes. Higher life expectancy, in particular in older age groups, is related to more patients with incurable and life- threatening diseases [1]. The Federal Statistical Office in Germany predicts an increase of persons being in need of care from 3.4 million in 2017 up to 4.1 million in 2030, and to 5.4 million in 2050 [2]. In the past, primar- ily cancer patients have benefitted from palliative care, but today and in future, people with non-oncological diseases, multimorbid patients [3] and patients suffering from dementia [4] should also benefit from palliative care. Over the course of these developments, palliative care will become more important in the care sector. The World Health Organization (WHO) defines pal-

liative care as “an approach that improves the quality of life of patients and their families facing the problem as- sociated with life-threatening illness, through the pre- vention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” [5]. The implementation of palliative care in Europe differs widely, as the European Association for Palliative Care (EAPC) Atlas of Palliative Care in Europe 2019 demonstrates [6]. In Germany, palliative care is di- vided into general palliative care (GPC), sometimes also called general outpatient palliative care, and specialised palliative care (SPC). The majority of patients are treated within GPC in outpatient care, in nursing homes or in hospitals within the contractual healthcare system [7]. According to the German Society for Palliative Medicine (DGP), around 90% of approximately 850.000 dying people in Germany are in need of palliative care, but only 10% of them are in need of SPC [8, 9]. SPC is for dying people who need a particularly complex treatment and the medical support of them is more demanding, such as a complex pain management. SPC includes the specialist outpatient palliative care (SAPV), the inpatient hospices or palliative care units in hospitals and is con- ducted through interdisciplinary teams (see additional Table 1). Palliative care should be made available at dif- ferent levels, so that the aims and objectives of all insti- tutions are different. Palliative care units for example should improve or stabilise the condition of individual

patients in order to discharge them, if possible, to their own homes. SAPV-teams in contrast should enable a dignified death in familiar surroundings. Moreover, the ‘Charter for the Care of the Critically Ill and the Dying’ in Germany published by the German Association for Palliative Medicine (DGP), the German Hospice and Pal- liative Care Association (DHPV) and the German Med- ical Association (BÄK) formulated recommendations as the basis for a national strategy. Dying, death and grief are part of life and all human beings have a right to a dignified death. Further, all critically ill and dying people have a right to

– comprehensive medical, nursing, psychosocial and spiritual care that takes into account their individual situation and palliative/hospice care needs.

– appropriate, qualified and, if required, multiprofessional care.

– care based on best practice. – benefit from care that takes into account

internationally recognised and adopted recommendations and standards regarding the delivery of palliative care [10].

Further information on palliative care in Germany can be found in the statement of the German National Acad- emy of Sciences Leopoldina and the Union of German Academies of Sciences and Humanities from 2015 [11] and the EAPC Atlas of Palliative Care in Europe 2019 [6]. Numerous international studies have shown that pal-

liative care is demanding [12]. For example, organisa- tional framework conditions such as many administrative tasks [13] or insufficient personnel to handle workloads [14], quantitative demands such as time pressure [15], demands resulting from nursing care such as therapy-resistant pain or lifting and carrying of patients [16], and in particular confrontation with illness, suffering and death of patients and their families showed to be demanding [13, 15, 17, 18]. Nevertheless, studies do not report higher levels of stress or demands of pal- liative care nurses compared to nurses in other disci- plines [15, 17]. Within an extensive literature review, Mary Vachon (1995) summarized that only the first early studies in the field of palliative care observed higher stress levels of palliative care nurses, but later studies

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did not. She hypothesised that the early recognition of the potential stress in the field of palliative care lead to the development of appropriate organisational and per- sonal coping strategies to deal with the stressors of this field [19]. According to previous studies, palliative care nurses seem to have a wide range of resources. For ex- ample, organisational resources such as the meaningful- ness of work [16, 20] or supervision [18] as well as social resources such as the team, were reported to be very im- portant resources [18, 21, 22]. In addition, personal re- sources like resilience [23, 24], humour, self-care [22, 25, 26], hobbies [21], physical activity [27], spirituality [21, 22] or empathy [18], a special personality [28] and socio- demographic factors like age and professional experience [19] might help to cope with work demands and pro- mote nurses’ health. Overall, it seems that palliative care nurses are satisfied with their work [27, 29, 30] and re- port low levels of burnout [13, 15, 17, 31]. In contrast, studies outside the palliative care setting reported con- sistently of an increasing workload with high burdens and a high intention to leave the profession of nurses [32–34]. Further, a recent literature review also suggests that healthcare professionals in GPC experience more symptoms of burnout than those in SPC settings [35]. Healthy and satisfied nurses are of enormous import-

ance worldwide, because their health may have an effect on the quality of the services offered by the health care system [36]. Studies from Germany investigating pallia- tive care aspects exclusively refer on SPC [16, 18, 37, 38]. For example, with focus on the resource ‘team’, Müller et al. (2009, 2010) reported that the team itself was ranked as the most important protective factor of nurses working in hospices [38] and palliative care units [18]. This finding was confirmed by Diehl et al. (2018) for SAPV-teams, inpatient hospices and palliative care units in hospitals [30]. Gencer et al. (2019) compared the working conditions, such as the overall stress level of nurses working in palliative care units and SAPV-teams, showing that, for example, the stress level is higher for nurses in palliative care units [37]. To the best of our knowledge, a study comparing the

burdens, resources, health and wellbeing of nurses in GPC and SPC in Germany has not been performed so far. There- fore, the aim of the present study was to address this gap by identifying and comparing the burdens, resources, health and wellbeing of nurses in GPC and SPC in Germany. This information may be relevant and could be used for develop- ing target group specific prevention programs in order to reduce burdens and to strengthen resources of nurses in palliative care. Furthermore, a comparison of the working situation of GPC and SPC nurses may contribute to new findings, which could have relevant implications for devel- oping interventional studies, with the goal of improving the health status of nurses and enhancing job satisfaction.

Methods Study design A nationwide cross-sectional empirical study was con- ducted in 2017. Ethical approval to perform the study was obtained by the ethics committee of the State Chamber of Medicine in Rhineland-Palatinate (Clear- ance number 837.326.16 (10645)). Data among nurses of GPC were collected from a 10%

sample (3278: 1190 nursing homes, 1961 outpatient care, 127 hospitals) of the database from the Institution for Statutory Accident Insurance and Prevention in Health and Welfare Services in Germany. Due to data protec- tion rules, this institution communicated with the health facilities of which 126 (3.8%) had agreed to participate in the survey. Because there is no national register for nurses work-

ing in SPC nor specialised palliative care institutions, first, all medical facilities in the specialised palliative care were identified (950: 358 SAPV institutions, 343 pallia- tive care units, 249 inpatient hospices) by an internet search. Secondly, an institution-related sample was drawn. Out of 532 institutions in the sample, 246 were willing to participate (46.2%). As described, the present study focused firstly on med-

ical facilities. The participating health facilities of GPC and SPC informed the study team about the number of nurses (nurse, geriatric nurse, nursing assistant or nurse in training and carrying for patients) and if they pre- ferred to answer a paper-and-pencil (with a franked re- turn envelope) or an online-questionnaire (with an access code). The participation was voluntary and an- onymous. Table 1 provides information about the amount of questionnaires send to the different health fa- cilities in GPC and SPC.

Questionnaire The questionnaire addressed four major issues. I) Basic sociodemographic characteristics (gender, age, etc.) and characteristics on current profession. II) Questions about occupational burden, III) questions on organisational, social and personal resources, and IV) questions con- cerning health and well-being. Since the specific job- related conditions between GPC and SPC are somewhat different, some questions were slightly adapted. The questionnaire contained questions from standardised, re- liable and valid instruments:

– Copenhagen Psychosocial Questionnaire (COPSOQ)

Parts of the German standard version of the COPSOQ version II [39] were used. The COPSOQ is a valid and reliable questionnaire to assess psychosocial work envir- onmental factors and health in the workplace [40]. The subscales used for the present study were ‘quantitative

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demands’, ‘emotional demands’, ‘demands for hiding emotions’, ‘meaning of work’, ‘workplace commitment’, ‘satisfaction with life’, ‘self-rated health’, ‘burnout’ and ‘intention to leave the profession’. The COPSOQ scales mostly consisted of several items and were collected with a five-point Likert scale (categories ranging from e.g. never to always). The ‘satisfaction with life’ scale was collected with a 7-point Likert scale (categories ranging from do not agree at all to fully agree) and the ‘self-rated health’ scale as well as the ‘intention to leave the profes- sion’ scale were collected with a single question (Table 2). The single items of the COPSOQ scales were trans- formed to a theoretical range from 0 (the lowest possible amount of the aspect under investigation) to 100 (the highest possible value). The transformation of the cat- egories into point values is a standardised procedure and was also used in the German validation study [40].

– Patient Health Questionnaire-2 (PHQ-2)

The PHQ-2 is the short version of the Patient Health Questionnaire-9 (PHQ-9), which is a valid and reliable instrument to measure depression [41]. The present study used the German version of the PHQ-2 questionnaire to collect information on the frequency of anhedonia and depressed mood during the last 2 weeks [42]. The question is: ‘Over the last two weeks, how often have you been bothered by the following problems?’ and the two items are ‘little interest or pleasure in doing things’ and ‘feeling, down, de- pressed, or hopeless’ with the response options ‘not at all’, ‘several days’, ‘more than half the days’, and ‘nearly every day’. They are scored as 0, 1, 2 and 3, thus the PHQ-2 score can range from 0 to 6 (Table 2). The recommended cut off value of ≥3 was used to classify depressive disorder.

– Resilience Scale (RS-13) Questionnaire

The RS-13 questionnaire is the short 13-item version of the original 25-item Resilience Scale which was devel- oped by Wagnild and Young (1993) [43]. The German version of the RS-13 was developed by Leppert and col- leagues (2008) and measures resilience, i.e. the ability to successfully adapt to critical life situations, on a 7-point scale with answer categories ranging from I do not agree to I fully agree. These categories were transformed to a score ranging from 13 to 91 (Table 2). A score between 13 and 66 was defined as low, a score between 67 and 72 as moderate and a score between 73 and 91 as having high resilience [44].

– Question about back pain from the health survey conducted by the Robert Koch Institute

The question about back pain was selected from the health survey conducted by the Robert Koch Institute [45]. The question is: ‘In the last 12 months, did you had almost daily back pain, which persisted 3 months or lon- ger?’ with three answer categories (yes, no, I don’t know).

– Other parameters

To assess palliative care specific working conditions, the questionnaire was extended by further questions, which were based on qualitative interviews with experts from palliative care [46] and a cross-sectional pilot study conducted in the specialized palliative care in Rhineland-Palatinate in Germany [16, 30]. Questions re- garding ‘burden due to organisational framework condi- tions’, ‘emotional burden due to death’, ‘burden due to care of patients’, ‘burden due to nursing care’, ‘burden due to care of relatives’ as well as questions regarding the resource ‘good working team’ were summarized to scales. The scale ‘burden due to organisational frame- work conditions’ consisted of 7 items and were collected

Table 1 Number of questionnaires send out to the health facilities and response rates

Question- naires send out

GPC SPC

Outpatient care Hospitals Nursing homes SAPVs Hospices Palliative care units

Send Return Rate (%)

Send Return Rate (%)

Send Return Rate (%)

Send Return Rate (%)

Send Return Rate (%)

Send Return Rate (%)

Paper 327 80 24.5 160 29 18.1 1777 315 17.7 749 254 33.9 1160 500 43.1 864 405 46.9

Online 329 16 4.9 0 389 31 8.0 429 88 20.5 206 45 21.8 131 34 26.0

Total 656 96 14.6 160 29 18.1 2166 346 16.0 1178 342 29.0 1366 545 39.9 995 439 44.1

Send Return* Rate (%) Send Return** Rate (%)

Total Paper: 2264 Paper: 445 Paper: 19.7 Paper: 2773 Paper: 1171 Paper: 42.2

Online: 718 Online: 52 Online: 7.2 Online: 766 Online: 200 Online: 26.1

Total: 2982 Total: 497 Total: 16.7 Total: 3539 Total: 1371 Total: 38.7

Note. Rate = response rate, *26 questionnaires (21 x paper-and-pencil, 5 x online) no identification to type of institution possible, **45 questionnaires (12 x paper- and-pencil, 33 x online) no identification to type of institution possible

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Table 2 Sources and variables of the questionnaire

Source Number of items

Example of items Outcomes of variables

Burdens

Burden due to organisational framework conditions

pilot study

7 How strong is the burden due to the care of to many patients?

scale 0–100, high = negative

Quantitative demands COPSOQ 4 Do you have to work very fast? scale 0–100, high = negative

Emotional demands COPSOQ 3 Is your work emotionally demanding? scale 0–100, high = negative

Demands for hiding emotions COPSOQ 3 Does your work require that you hide your feelings? scale 0–100, high = negative

Emotional burden due to death pilot study

9 How strong is the burden due to patients dying a painful death?

scale 0–100, high = negative

Burden due to care of patients pilot study

6 How strong is the burden due to depressive patients? scale 0–100, high = negative

Burden due to nursing care pilot study

5 How strong is the burden due to lifting and carrying of patients?

scale 0–100, high = negative

Burden due to care of relatives pilot study

12 How strong is the burden due to relatives cause unrest? scale 0–100, high = negative

Resources

Organisational

Meaning of work COPSOQ 3 Do you feel that the work you do is important? scale 0–100, high = positive

Workplace commitment COPSOQ 4 Do you enjoy telling others about your place of work? scale 0–100, high = positive

Meaningfulness of work pilot study

1 How much do the following help you to handle the workload?

not/little helpful vs. quite/ very helpful

Gratitude of patients/relatives pilot study

each case 1

How much do the following help you to handle the workload

not/little helpful vs. quite/ very helpful

Recognition through supervisor/ colleagues/ patients/relatives/ social context/ salary

pilot study

each case 1

Do you receive recognition for your work from …? disagree/slightly disagree vs. slightly agree, agree

Social

Good working team pilot study

4 I get help and support from colleagues in emergencies. scale 0–100, high = positive

Family pilot study

1 How much do the following help you to handle the workload?

not/little helpful vs. quite/ very helpful

Friends pilot study

1 How much do the following help you to handle the workload?

not/little helpful vs. quite/ very helpful

Personal

Satisfaction with life COPSOQ 5 In most ways my life is close to my ideal scale 0–100, high = positive

Positive thinking/ professional attitude/dissociation/ hobbies/ sport/ religiosity/spirituality/ self-reflection/ self-care

pilot study

each case 1

How much do the following help you to handle the workload?

not/little helpful vs. quite/ very helpful

Resilience RS-13 13 I can accept it when not all people like me scale 1–91, 13–66 = low, 67–72 =moderate and 73–91 = high resilience

Health and Wellbeing

Self-rated health COPSOQ 1 If you evaluate the best conceivable state of health at 10 points and the worst at 0 points: how many points do you then give your present state of health?

scale 0–100, high = positive

Burnout COPSOQ 6 How often do you feel emotionally exhausted? scale 0–100, high = negative

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with a five-point Likert scale (‘no burden’, ‘very low bur- den’, ‘low burden’, ‘high burden’, ‘very high burden’). The scales ‘emotional burden due to death’, ‘burden due to care of patients’, ‘burden due to nursing care’ and ‘burden due to care of relatives’ consisted of several items and were collected with a six-point Likert scale (‘does not apply’, ‘no burden’, ‘very low burden’, ‘low burden’, ‘high burden’, ‘very high burden’). The scale ‚good working team’ consisted of 4 items and was col- lected with a 4-point Likert scale (categories ranging from disagree to agree) (Table 2). The self-developed items of the scales were prepared according to the COP- SOQ guidelines. The answer category ‘does not apply’ was assessed as ‘no burden’. Furthermore, single categor- ical questions to resources were added, which showed to be of crucial importance within the pilot study [16, 30]. The categorical variables regarding resources were di- chotomized (example: not helpful/little helpful vs. quite helpful/very helpful). Table 2 provides an overview of the themes and

sources of questions, as well as examples for the ques- tions and variable outcomes.

Statistical analysis All scales (COPSOQ and self-developed) were prepared according to the COPSOQ guidelines. Scale values were computed as the average of the values of the single items of a person, if at least half of the single items were an- swered [47]. The proportion of missing values for the single items of the scales was below 2% in SPC and below 3% in GPC. Scale values are presented as mean values. To assess the internal consistency of the scales, the Cronbach’s Alpha was used. Values > 0.7 were regarded as acceptable [48]. Descriptive statistics (abso- lute and relative frequencies, means, standard deviations (SD)) were used to describe the data. The independent samples t-test was used to compare the mean scale values of GPC and SPC nurses. Further, a difference of at least 5 points in the mean value of a scale demon- strates a relevant difference between groups, thus the mean values of the scales of nurses working in GPC and SPC were compared. This method is regularly used in COPSOQ studies because a difference of 5 points in the mean value represents a small to intermediate effect size

[Cohen’s d] of 0.2–0.35 [49]. Only results being statisti- cally significant and fulfilling the difference of at least 5 points in the mean value were interpreted as relevant differences. For comparisons between categorical vari- ables, the chi-square test of homogeneity was used to determine whether observed sample frequencies in GPC and SPC differed significantly from expected frequencies. Effect sizes were computed (Phi for 2 × 2 contingency ta- bles and Cramer’s V for larger tables), where values be- tween 0.10 and 0.30 represents a small to medium effect size and values of 0.50 represents a large effect size [50]. The significance level was established at p < 0.05 (two- tailed). Statistical analyses and graphical representation were

performed using SPSS version 23.5 and Microsoft Excel 2016, respectively.

Results Descriptive analyses For GPC, 2982 questionnaires were sent out and 497 (16.7%) returned. For SPC, 3539 questionnaires were sent out and 1371 returned (38.7%). Due to low GPC participation in hospitals, these were excluded from the analysis (Table 1). After data cleaning, n = 437 nurses form the GPC and n = 1316 nurses from the SPC were included into further analyses.

Characteristics of the study sample A summary of the sample characteristics is given in Table 3. Nurses in SPC were little older than nurses in GPC (mean 46.1 vs. 42.8 years, p ≤ 0.001). Furthermore, GPC and SPC nurses differed in age structure, in par- ticular in the lowest and highest age groups. More nurses in SPC reported higher rates of graduation and levels of education than nurses in GPC. 78.7% of nurses in GPC worked in nursing homes and

21.3% in outpatient care. 40.9% of nurses in SPC worked in hospices, 33.5% in palliative care units and 25.6% in SAPV institutions. SPC nurses had more professional ex- perience. More SPC nurses reported an additional quali- fication in palliative care than GPC nurses. On average (median), GPC nurses reported spending 20% of their time in the care of palliative patients. SPC nurses experi- enced more deaths of patients in the last month than

Table 2 Sources and variables of the questionnaire (Continued)

Source Number of items

Example of items Outcomes of variables

Intention to leave the profession COPSOQ 1 How often in the last 12 months have you thought about giving up your profession?

scale 0–100, high = negative

Chronic back pain RKI 1 In the last 12 months, did you had almost daily back pain, which persisted 3 months or longer?

yes, no, I don’t know

Depression PHQ-2 2 Over the last 2 weeks, how often have you been bothered by the following problems?

score 0–6, score≥ 3 major de