Background
Caregivers of patients in the home-based palliative care setting especially confront stressors and experience emotional and physical burden [
1‐
3], because the families assume responsibility for tasks and roles to provide palliative care at home [
4,
5]. Furthermore, families need to deal with critical situations such as pain, insomnia, dyspnea, vomiting or other kinds of serious events [
6]. Even with support from palliative care teams, the family caregivers might not be well prepared for the challenges presented as the patient approaches death [
7]. Cumulative evidence has suggested that critical events are associated with many adverse physical and psychological consequences among family caregivers [
8‐
13].
Research suggests that home-based palliative care support from professional services to family members is often not adequate and not comprehensive [
14]. Given unique social and disease-related circumstances, family members have their special individual needs and perceived burdens [
15]. This is particularly true for home-based palliative care in Germany, where a wide range of palliative home care services have been developed in recent decades. In 2017, there were approximately 1500 palliative home care and hospice services, and 295 specialist palliative home care services in Germany [
16], covering about half of the 850,000 dying people per year, along with the family members involved [
17].
One approach to assess psychosocial situations of the family at home may focus on the critical health events of terminally ill people to which family members are exposed. To date, there is an absence of assessment tools that have been adapted and validated in the German home-based palliative care context [
18]. Following a comparison of available and practicable instruments, Galatsch and colleagues [
18] discovered that the Stressful Caregiving Adult Reaction to Experiences of Dying (SCARED) Scale has received attention in the research of palliative care in the past years [
8]. Nevertheless, the frequency and associations between these exposures and the family caregiver’s distress in terminal care among caregivers at home have not been investigated in Germany. To the best of our knowledge, our current study is the first one with emphasis on home-based palliative care services in Germany. The aim of this study was to apply the SCARED scale in Germany for assessing family caregiver exposure to critical health events in patients receiving palliative care in the home and relate these exposures to the family caregiver’s degree of distress and general health.
Discussion
The objective of this study was to examine the frequency of stressful health events of German home-based palliative care patients and how these events related to fear and helplessness as well as the general health, or quality of life, of the family caregiver. Overall, the families in our sample were facing several critical health events in the care of the dying patient at home that were distressing to them. These exposures evoked a certain level of fear and helplessness in the family members. Compared to the original study from the USA by Prigerson [
8], both SCARED total score and frequency score were relatively lower in our study (total score 23.2 vs. 19.4, frequency score 10.6 vs. 7.7). When looking at each critical event closely, we found the family caregivers in our sample reported overall more exposures to
“severe pain/discomfort”,
“falling, collapsing, passing out”,
“vomiting” and “
insomnia”, whereas other exposures were less frequently reported in our study. With respect to fear and helplessness, exposure to two psychosocial events,
family caregiver felt patient “had enough” and
family caregiver thought patient was dead contributed most in our study, but the USA study found
“falling, collapsing, passing out” also produced much fear and helplessness.
The differences can be explained in a couple of ways. First, Prigerson’s study was conducted in a hospice inpatient setting and our study was conducted in a home-based palliative care setting. The patient profile of the study participants may have been different. Although we did not have direct information to compare the two studies, it was of interest to note that caregivers reported more daily-based frequency of critical events in the USA Prigerson’s study; by contrast, data from our study revealed that a higher prevalence of less frequent exposure to these caregiving stressors (weekly or once/twice) were reported more often. Despite the fact that the daily frequency of critical health care events in Prigerson’s study was higher, we found a trend toward higher mean scores of fear and helplessness on most critical events in our study. This could also be attributed to the differences between both settings. The family caregivers may have greater support for care of the patients in the hospice settings. In home-based palliative care, the demands on family members are greater and they are less trained and/or prepared for caring for a dying person [
7,
24‐
26]. Second, differences between healthcare systems and the development of palliative care services might also be different in our findings and those of Prigerson et al. [
16,
27,
28]. As mentioned earlier, home-based palliative care in Germany has developed considerably in the past years, and is covered by the universal medical insurance to everyone in the country [
17]. Perhaps differences in acceptance and coverage in palliative care services between Germany and the USA account for differences between SCARED scores. Nevertheless, our results are in line with previous studies [
8,
29], both total and frequency scores exerted negative effects on general health of the family caregiver.
Hudson and colleagues [
30] suggested the systematically implementation of assessments as a standard in the palliative care practice. Regular use of assessment instruments can lead to improvement of the quality of care of patients and family outcomes [
31‐
34]. Therefore, a combination of systematically applied instruments and individual-tailored offers of consultation from the palliative services could be of help to better integrate and include the families during the care process, and at the same time to meet their needs better. For this purpose, the SCARED Scale, due to its unique properties (brief and easily administered instrument), could serve as a screening tool in palliative care to identify distressed family caregivers who are in need of extra or further support. Also, this instrument could be systematically applied to obtain an initial and continuous assessment about the frequency and burden of distressing events within the home-based palliative care situation. Future research for individual changes of the distress among family caregivers during the entire palliative care situation, taking different patient characteristics into account, is needed.
To our knowledge, this is the first study to assess caregiver exposure to distress with home-based palliative care in Germany; also, this is the first study that we know of to use the SCARED Scale out of the USA. However, several limitations need to be considered. First, the response rate of our study was not high. The potential reasons might be low acceptance of palliative research and/or high workloads of the contacted palliative teams in Germany. By contrast, a recent study found that family caregivers in Australia appreciated the opportunities to participate in palliative research, indicating potentially cross-cultural difference [
35]. Thus, non-response bias could not be ruled out when interpreting the current findings. However, the sample size of our study seemed to be adequate for generating meaningful findings, compared to previous studies [
8]. Second, due to the nature of convenience sampling with two steps, it is impossible for us to yield a random sample of family caregivers; in addition, we had little information how the palliative teams distributed the questionnaires to the target population. Thus, the power to generalize our research findings to other settings is limited. Third, due to the nature of paper-based survey with self-reported data, common method bias and recall bias on the observed associations cannot be ruled out, given the fact that family members reported patients’ symptoms significantly worse than professionals [
36]. Finally, some potentially relevant factors which might relate to caregivers’ general health were not included in our current study, for example, perceived burden of care or profile (type and severity) of patients’ condition.
Conclusion
In conclusion, the findings of our study suggest that the family caregivers with home-based palliative care in Germany are facing a number of critical health events of the dying patients, resulting in fear and helplessness; both exposure and distress are associated with poor health. In addition to the initial study in hospice settings from the USA, we found that the SCARED Scale could be applied as a screening tool in home-based palliative care setting to identify distressed family caregivers with a potential need of extra or further support. Considering the negative effects of caring for a dying relative on individuals, families, and societies, future research, with a well-tested instrument in the palliative practice assessing caregivers’ psychosocial situation, such as the SCARED scale, is recommended or suggested within and beyond American and German contexts.
Acknowledgements
Not Applicable.