Abstract
Abstract
Background:
Little is known about the experiences of family caregivers of hospitalized patients with confirmed methicillin-resistant Staphylococcus aureus/multiresistant gram-negative bacteria (MRSA/MRGN) diagnosis at the end of life. The study at hand is a subproject of an interdisciplinary cooperation project that aims at developing a patient-, family-, and team-centered approach in dealing with MRSA/MRGN-positive hospitalized patients in palliative and geriatric care.
Objectives:
The present study aimed to assess the individual effects of the patient's MRSA/MRGN colonization or infection and isolation measures on family caregivers.
Design:
Between April 2014 and September 2015, all known family caregivers associated with an MRSA/MRGN-positive patient from a palliative care unit, a hospital palliative care support team, and a geriatric ward were considered for study participation. A qualitative interview study with family caregivers and an additional focus group was conducted. Data were analyzed using the principles of Grounded Theory.
Results:
Family caregivers (N = 62) raised suggestions regarding the provision of information and communication on the MRSA/MRGN diagnosis and hygiene measures from staff members and the consistency of hygiene procedures. Family caregivers requested not to be stigmatized or being disadvantaged due to the MRSA/MRGN diagnosis of the patient, and they wished to receive psychosocial and emotional support.
Conclusions:
Staff members and institutional stakeholders should be aware that family caregivers might be burdened and upset by positive MRSA/MRGN diagnosis and the required hygiene measures. The need for detailed and understandable information on MRSA/MRGN, adequate communication between staff members and family caregivers, and support for family caregivers should be of special attention in particular in end-of-life care.
Background
I
In a general patient population, the application of efficient isolation and eradication measures is crucial both for individual patients' safety and for population-based infection control.5–7 However, in the particular case of patients at the end of life and their family caregivers, there might be a dilemma as isolation measures possibly contradict the main principles of end-of-life care (improvement of quality of life, palliation of symptoms, social inclusion). A few articles on the psychological effect of isolation measures on patients are available. They indicate that patients feel stigmatized, stressed, and have fears of infecting someone else, and that isolation negatively affects patients' mood.8–12
Attempts were made to gain knowledge about the prevalence, incidence, and risk factors for MRSA colonization and infection in end-of-life care institutions, 13 and perspectives of staff members from palliative care units or hospices were investigated.14,15 Apart from this scant existing body of literature, not much is known about the behavioral, social, and health-related effects of MRSA and/or MRGN (MRSA/MRGN) on family caregivers. One single Irish study focused on the impact of MRSA on advanced cancer patients and family caregivers. 16 Fears and worries due to MRSA diagnosis and a significant psychological impact on family caregivers were reported.
Objectives
The study at hand is embedded in an interdisciplinary cooperation study project (M-EndoL, Federal Ministry of Education and Research 01GY1314) that aimed at developing a patient-, family-, and team-centered approach in dealing with MRSA/MRGN-positive hospitalized patients during their last phase of life in palliative and geriatric care.
The current subproject aimed at investigating family caregivers' individual perception of and experiences with MRSA/MRGN colonization or infection and isolation measures at the end of life of their loved ones. The term “family caregiver” as used in this article includes other nonrelated persons who had a close relationship with the patient.
Design
Study plan and participant recruitment
Between April 2014 and September 2015, all known family caregivers older than 18 years associated with an MRSA/MRGN-positive patient were personally invited for study participation by trained researchers during inpatient stay at a German palliative care unit, a hospital palliative care support team at acute wards and a geriatric ward.
(1) All family caregivers who consented to participate in the study were queried via semistructured in-depth interviews. Meetings were held either in the university hospital ward rooms or, if desired, at the participant's private home, in a neutral location or by telephone. Recruitment procedure was stopped as soon as data saturation was reached in the analysis.
(2) Those interview participants who had agreed to be contacted again in the further study process were invited to a focus group session that took place at the palliative care ward in January 2016 and was led by two trained and skilled researchers.
All participants were informed before study participation that they can withdraw their consent without stating any reason and were offered psychosocial support. If study participants appeared to be overburdened, became upset, or emotionally agitated during the interview or focus group, a time out was offered. All data were saved in a depersonalized manner.
This study was approved by the local ethics committees (Ethics Committee of the Medical Faculty in Erlangen: 302_13 B, 15.01.2014; Institutional Review Board, Regensburg, Germany) and the responsible data protection supervisors.
Data collection
(1) For the face-to-face interviews, a semistructured interview guideline (Table 1) on family members' individual perceptions and experiences in terms of the patient's colonization or infection with MRSA/MRGN and the related hygiene measures was used. Some sociodemographic questions about the participants and the patients, for example, gender, age, relationship, or time of diagnosis, were assessed. The interviewers assessed the participants' ability to participate in the study (very good: no difficulties in understanding and answering the questions; good: few additional explanations needed or participants with sensory impairment; moderate: participants were unfocussed or needed many explanations) and the quality of gained data (very good: high data density; good: sufficient picture of participants' individual perceptions and experiences; moderate: unclear whether all participants' answers referred to both MRSA/MRGN and the end-of-life situation).
(2) For the focus group discussion, text samples from the face-to-face interviews were chosen to stimulate group discussion between family members to determine the group's consented suggestions for dealing with MRSA/MRGN in end-of-life care.
All interviews and the focus group discussion were digitally recorded and transcribed verbatim for further data processing and analysis.
Data analyses
(1) All face-to-face interviews were analyzed qualitatively according to principles of Grounded Theory (GT) using the software for qualitative data analysis MAXQDA 17 for data management, coding, and analysis.
In terms of building hypothesis and generating a theoretical framework, the bottom-up analysis technique allows to systematically code single text phrases (so-called codes), to continuously summarize similar codes into more and more superior concepts, and finally, to inductively develop overall categories within a final code structure.
(2) This resulting code structure was used to analyze the focus group interview deductively. New codes from the focus group were added inductively if text phrases did not fit in the given code structure from the interviews.
All face-to-face interviews and the focus group interview were first coded independently by two trained researchers. Then, coding conflicts were resolved. A third researcher reviewed consistency and precision of codes, concepts, and categories.
Results
Study sample
During 18 months of study duration, family caregivers of 182 patients with MRSA/MRGN-positive findings were eligible for study participation. Fifty-two potential participants refused participation and 50 others were not contacted because patients had refused consent to approach their family members. Finally, 62 family caregivers related to 52 patients (geriatric wards: 21 family caregivers related to 19 patients, palliative care unit: 35 family caregivers related to 28 patients, hospital palliative care support team: 6 family caregivers related to 5 patients) were enrolled in this study.
Sociodemographics, MRSA/MRGN diagnosis, and interview-related information
Participants were the patient's child (48.3%), his or her spouse (29.0%), or other family members or friends (22.7%; Table 2). Half of the participants knew about the patient's MRSA/MRGN diagnosis for at least five weeks, 35.5% knew about the diagnosis between one and four weeks, and 14.5% knew about the diagnosis less than one week (Table 2).
MRGN, multiresistant gram-negative bacteria; MRSA, methicillin-resistant Staphylococcus aureus.
Interviews took place during the patient's hospital stay (77.4%, n = 48) or thereafter (22.6%, n = 14) in case of sudden patient death (n = 7), transfer/discharge, or due to organizational barriers (n = 7). Fifty interviews took place at a hospital ward room, seven at the family caregiver's private home, and five by telephone.
(1) The mean duration of the face-to-face interviews (n = 62) was 39.8 minutes (standard deviation ±22.7 minutes, range 13–135 minutes). The interviewers assessed the participants' ability to participate in the study as being very good in 91.9% and good in 8.1%, and the quality of gained data as being very good in 88.7% and good in 9.7%, respectively.
(2) The focus group discussion with three participants lasted 90 minutes. Participants were of both sexes and in different relationships (spouse, child) with the patient. All of them were bereaved.
Findings from coding analysis of face-to-face interviews
The presentation of findings will focus on four overall developed categories on family caregivers'
(i) experiences of information provided on MRSA/MRGN;
(ii) experiences of institutional management approach and staff's behavior;
(iii) individual estimation of the emotional and behavioral effects of the patient's MRSA/MRGN diagnosis and required hygiene measures; and
(iv) assessment of the situation with MRSA/MRGN and associated risks.
(i) Family caregivers received information from staff about diagnosis, therapy, transmission of MRSA/MRGN, and hygiene measures (Table 3). They assessed the quality of information in a range from “I talked to the doctor about it actually which was great. Then I understand it.” (A7) to “Information we received was very poor to be honest” (A1). Some family caregivers were not informed personally, but they found a written note on the door of the patient's room, or were confronted with contact precaution material provided in front of the room. Others stated: “We did not receive any information at all” (A24). Written information was rated to be incomprehensible “I also received a brochure but didn't really understand it fully. […] It was German. How do you say. Lots of foreign words. Powerless.” (A7) and in some cases, family caregivers had not read the information, stating that the patient's situation had required other priorities.
(ii) Family caregivers noticed a broad range of management approaches at the study centers. Professionals were reported to show different attitudes toward hygiene measures and handled these measures differently, inconsequently, or inconsistently. These experienced discrepancies irritated family caregivers and raised their doubts in the MRSA/MRGN management approach:
“One time he had to wear a protective garment, the next time he didn't have to. The next day he didn't have to and then someone told him he would have to. I, as a dependent, didn't really know what was going on and what is right or wrong” (A24).
(iii) As effects of patients' colonization or infection with MRSA/MRGN and the according isolation measures, family caregivers reported their own emotional reactions (Table 4) and behavior (Table 5). Emotions of family caregivers confronted with the MRSA/MRGN diagnosis and isolation measures for the first time ranged from feeling shocked and irritated to not being affected at all. Some described that they got used to the situation “after the first shock” (A2015).
(iv) Family caregivers assessed the problems and the risks of MRSA/MRGN differently. Their assessments ranged from “However, maybe MRSA is not as dangerous.” (A7) over general risks “First of all, I always hear in media that thousands of people die from it around the world.” (A24) to personal consequences “And that's when you start to wonder: should I really go to a hospital? If I come home even more sick than I went in. In particular with bacteria you may not even be able get rid off. That's it. Because there is no effective cure” (A8).
During the interviews, some family caregivers reflected upon their own level of knowledge about MRSA/MRGN at the time of the diagnosis: “Basically we don't know anything. What are the consequences for us? Are we endangered or what should we look for?” (A24) or at the time of the interview: “[…] I just say […] I don't even know, […] whether MRSA is dangerous or something like that, I don't know it” (A16).
Family caregivers had different ideas of how the transmission of MRSA/MRGN works. The risk of transmission was estimated high “But it is often the case in hospitals that you get infected somehow.” (A5)—even in public environments “I don't hope that we got infected. […] I think you basically can get infected everywhere, that's my feeling” (A12).
Many caregivers (n = 26) rated the impact of the positive diagnosis to be negligible in relation to the patients' main diagnosis and end-of-life situation. “It is another aspect that needs to be considered, which makes it even more complicated” (A28). “I think there are things worse than MRSA in our life at the moment” (A2). They focused upon their loved ones' well-being and farewell without paying attention to the MRSA/MRGN diagnosis and the related isolation measures: “And yeah one just doesn't think about it anymore. It is secondary because the person is in the center–in the foreground. One says goodbye, one is in an emotional state where you don't think about it anymore. […] it is completely off one's mind. These precautions […] You think about it somehow but it just became secondary” (A19).
Hypotheses
The analysis of face-to-face interviews resulted in the following hypotheses (Fig. 1):

Framework on effects of MRSA/MRGN in end of life on family caregivers. MRGN, multiresistant gram-negative bacteria; MRSA, methicillin-resistant Staphylococcus aureus.
• Experiences of the feeling of having no, little, or contradictory information about MRSA/MRGN might burden family caregivers.
• The feeling that the MRSA/MRGN contact precautions and other hygiene measures are inconsequent themselves or are put into practice inconsistently might strengthen the general feeling of being insecure due to MRSA/MRGN and required hygiene measures.
• Fear and uncertainty might cause severe strains for family caregivers and might affect their social behavior and emotions toward the patient.
• The feeling of isolation, being rejected, and excluded due to MRSA/MRGN might cause social strains.
• Attitudes such as subordinating the impact of MRSA/MRGN in relation to the patient's primary diagnosis or end-of-life situation and assessing the risk of MRSA/MRGN to be low might lead to less severe effects on family caregivers.
• Family caregivers who have a rather pragmatic approach toward contact precautions and use them without questioning or avoiding dealing with the MRSA/MRGN situation might be less affected by the restrictions.
Findings from coding analysis of focus group discussion
The focus group discussion with family caregivers confirmed and expanded data from face-to-face interviews in terms of forthright suggestions and requests on information and communication, institutional management, staff's behavior, as well as psychosocial and emotional support (Fig. 2).

Family caregivers' suggestions and requests.
Discussion
To our knowledge, this is the first study investigating the individual effects of MRSA/MRGN colonization or infection and hygiene measures on family caregivers from affected end-of-life patients receiving palliative or geriatric care. The family caregivers' perceptions and experiences, as well as related physical, emotional, social, and behavioral effects, may help to find starting points for practical conclusions and ideas for interventions.
The findings show that family caregivers have a broad range of experiences with MRSA/MRGN during patient's end-of-life care and react in many different ways. Family caregivers show tendencies toward one type of reactions to the situation described in the framework—they either do not care about MRSA/MRGN or they are extremely burdened.
The main principles of end-of-life care are to improve the patients' and family caregivers' quality of life and, among patient-centered aims, to offer support to the family during the patient's illness and through their own bereavement. By contrast, for several family caregivers in this study population, the MRSA/MRGN diagnosis and the hygiene measures mean uncertainty, fear, distress, and anger. The existence of the MRSA/MRGN diagnosis and the related measures influenced their social behavior toward the patient and increased social strains. The dilemma of contradicting principles of isolation and of end-of-life care is illustrated by findings in this study. It has been shown in our data that saying goodbye can be disturbed by contact precautions (Table 4), which might complicate the bereavement process. Long-term consequences for family caregivers, such as amplified burden and prolonged grief,18,19 may be the result and should be investigated in future research.
Obvious preventive strategies to avoid MRSA/MRGN in the hospital and consistent procedures in terms of isolation measures could ease family caregivers' uncertainty. More detailed, family caregivers' crucial requests are clear, directive information and an adapted communication approach, including suitable information material at the time of MRSA/MRGN diagnosis. This might help family caregivers to find a good way to handle the situation and reduce uncertainty. In the findings by Gleeson et al.13,16 about the impact of MRSA on patients with advanced cancer, their family members confirm the need for effective communication of the MRSA/MRGN diagnosis.
The possibilities of standardized contact precautions for staff members and consistent risk assessment through staff members should be considered by those who are responsible. Family caregivers seem willing to differentiate between varying procedures according to the requirements of medical or nursing tasks, if they are explained both properly and comprehensibly. Additional adverse effects might occur if the ward's management approach is perceived inconsistently or incomprehensibly. Family caregivers might use contact precautions less or more extensively than required and might be more burdened than necessary. The family caregivers' feeling of being isolated and rejected and suffering from disadvantages should be addressed. Special provisions for the group of patients diagnosed with MRSA/MRGN and their family caregivers could be developed, and it should be evaluated if they ease their social strains.
The specific consideration of the end-of-life care situation might be feasible in specialist palliative and geriatric care units but could be challenging for acute wards. However, a strategy for dealing with MRSA/MRGN in end-of-life care should be found.
Study limitations
In the study at hand, only caregivers' perspectives are considered. Additional perspectives from patients, health professionals, and institutional stakeholders will follow. The data collection was performed in two study centers and findings are not directly transferable to other settings as, for example, on outpatient care.
Information that health professionals and others presented to family caregivers might have influenced their opinions and knowledge. Their level of knowledge has possibly changed between the time of diagnosis and interview.
The study sample was not differentiated based on whether the patients were colonized or infected with MRSA/MRGN. The two different ways in which patients are affected—colonization or infection—might influence family caregivers' estimation of the MRSA/MRGN situation as the MRSA/MRGN colonization does not cause any symptoms but the infection might do so.
The developed framework does not explain causal correlations.
The focus group was smaller than planned due to organizational challenges and because several approached family members declined participation. Nevertheless, the variety of perspectives of the participating individuals led to a vivid and complex discussion and to sufficient output.
Conclusions
Improved communication and information at the time of MRSA/MRGN diagnosis about risks and hygiene measures could support family caregivers and ease their burden. Adapted hygiene measures in end-of-life care are requested by family caregivers.
Family caregivers' requests and suggestions on the improvement of dealing with patients and family should be taken into account when developing an approach for dealing with MRSA/MRGN in end-of-life care.
Staff members and institutional stakeholders should take into account that differences in handling contact precaution measures might lead to uncertainty for family caregivers and therefore should be properly explained.
Footnotes
Acknowledgments
We gratefully thank all family caregivers for their participation in this project. Grant support was provided by the Projektträger im Deutschen Zentrum für Luft- und Raumfahrt (Project Management Agency—part of the German Aerospace Center) supporting the Bundesministerium für Bildung und Forschung (Federal Ministry of Education and Research).
Author Disclosure Statement
No competing financial interests exist.
