Participants

Individual in-depth interviews about the problems of home-care nurses in dirty homes were held with patients and their representatives (n = 5), home-care nurses (n = 8) and other professionals in the community who deal with people with dirty homes (n = 10), with a good spread across different regions and communities (Table 2). Twenty participants with comparable backgrounds to the initial interviewees discussed how best to deal with the problems (Table 2).

Problems home-care nurses face

The interviews revealed three main themes and ten subthemes in the problems that were mentioned regarding the provision of home care for people with a dirty home: (A) there are dilemmas in choosing the right nursing care; (B) cooperation and an integrated approach are often necessary but lacking; and (C) nurses have insufficient competencies (Fig. 1).

  1. A.

    Dilemmas in choosing the right nursing care

Five subthemes form this main theme about what kind of care home-care nurses should provide to patients with a dirty home. Home care nurses were reluctant to intervene. They did not want to involve colleagues and professionals from other organizations because they first wanted to win the trust of a new patient. Home-care nurses who had built a relationship of trust after a period of time were anxious about losing the patient’s trust because they were afraid that the patient did not want them to turn to someone else for help. As a public-health nurse specialized in dealing with the inhabitants of unclean houses remarked: “Home-care nurses sometimes take care of someone for years, so there is a lot of trust there. They sometimes do more than their duties. And then they’re afraid of losing the patient’s trust because the patient doesn’t want her to get someone else’s help. They have, as it were, penetrated the patient’s system and can no longer maintain a professional overview”.

Home-care nurses were also uncertain about the safety risks and how to deal with them in a dirty home. They found it difficult to estimate the risks and dangers: When is the house safe enough for the patient, the environment and myself? There were generally no frameworks, decision instruments, or guidelines on when and how care could be refused and what the next steps were. Another issue that emerged was that norms and values about what constitutes a dirty home differed between home-care nurses: “Some find a lot of dust or cigarette smoke problematic; others don’t care”. Nurses found it difficult to determine how to provide care in a dirty home. For example, some sat on a plastic bag for protection or left their coat and bag in the car. Others showered at home before moving to the next patient or scheduled the patient at the end of the shift.

The third subtheme concerns barriers to properly providing the required care. On the one hand, this had to do with the inability to provide care safely and hygienically, such as providing wound care in the presence of a lot of dust, dirt or vermin. As a nurse specialized in wound care said, ”A lot of specialist care is provided. And also care where you really have to be able to work hygienically. Usually it is possible to create a clean work field somewhere, but in such a very dirty household I find that difficult”. Another problem was helping someone with showering if the shower was not accessible or if there were no clean towels. Care provision was also perceived as less feasible because of the extra time required. It took more time to provide care because of the extra preparations required, such as clearing things to make room and cleaning a surface. It also took time to gain the patient’s trust and discover possible underlying problems. Therefore additional time was needed, which was not always available in tight timetables.

A fourth subtheme that arose was a task-oriented attitude among nurses. Nurses with a task-oriented attitude strived to provide the indicated care and support. A person-oriented attitude is required in particular for patients with dirty homes. The task-oriented attitude was sometimes evident in, among other things, posting indirect and judgmental comments about the house and being patronizing to patients. As a psychiatric nurse in the community remarked, “What we sometimes notice is that things don’t go well within regular home nursing, for example because they then come in and they immediately have to have a high-low bed. And the rug has to go, because otherwise the bed will roll too heavily. Yes, they immediately get a whole bunch of garbage bags that have to go and that trash can is not good, neither is that shower drain. If people do have a certain disorder, it is often far too much and they start screaming or cursing. ‘Get out of my house! What are you meddling with?’ And then they slam the door”. Home-care nurses often focused on what they could not do in a dirty house, rather than looking at what it was still possible for them to do.

Finally, care provision in a dirty home was hindered by the strong emotions that the situation evoked in nurses, such as fear and feeling dirty, sometimes even leading to panic. There were also feelings of helplessness: nurses worried about patients and their situations, but did not know what to do about it. Nurses were also concerned about their own health. Sometimes the contamination was so intrusive that nurses mainly saw the dirt and not the patient: the dirt and clutter were overwhelming, as a home care nurse explained: “Really accumulated dirt, accumulated dust, grease. And I remember going to the kitchen to get a dustpan, and then I came across a fly trap, such a sticky thing. Which was also completely covered in flies. I got them in my hair. And then I panicked. And then I know the client said, ‘Oh, that’s okay girl’. But luckily I still had my gloves on, so I forcibly took them off because I thought it was so disgusting. I found it really disgusting. But I see things like that regularly”.

  1. B.

    Cooperation and an integrated approach are often necessary but lacking

Three subthemes concerned barriers to cooperation and an integrated care approach (Fig. 1). Participants in the focus groups confirmed that the most prominent problem was the lack of cooperation between different organizations in the community, such as home-care organizations, public-health services, welfare and housing. A dirty home was often the result of complex problems such as recurring psychological, psychiatric, physical and/or cognitive problems, a limited social network, financial problems and general avoidance of care. A new home-care patient was often already known to professionals in other organizations. But, as a home-care nurse remarked, “Collaboration is crucial, but there is a lack of coherence in the care provided. They are all islands.” According to the interviewees, this was where things went wrong because organizations did not have cooperation agreements, and professionals did not know each other and were not aware of each other’s possible roles in the care for patients with dirty homes. The public-health service sometimes had a team specialized in dirty home conditions, including social nurses with a lot of knowledge. However, other professionals in the community were often unaware of this.

Integrated care was also frequently hindered by the design of the Dutch health-care and social support system (structure, laws and regulations). Participants mentioned the de-institutionalization of care in recent years, in particular for the elderly, people with psychiatric problems and people with intellectual disabilities: people now live independently in the community as much as possible and for as long as possible. Care and support facilities were rather fragmented and integrated care was found to be difficult to achieve. For example, there was a division between domestic care and social support financed by the municipality on the one hand and the nursing care delivered by home-care nurses under the Health Insurance Act on the other hand. There were also local differences in facilities, for example in whether the municipality contributed to the financing of the cleaning of dirty homes.

A third subtheme focused on the role of home-care organizations and the lack of cooperation between home-care organizations and other organizations. Home-care nurses rarely contacted other organizations in the fields of health care, welfare and housing regarding patients with dirty homes. A psychiatric nurse pointed out that whenever a nurse contacted a psychiatric organization, “that always takes a lot of time. Because then you have to do the intake, and there are waiting lists and such. And if home-care organizations have to provide physical care in the meantime, the nurse is alone. And then the nurse has to deal with very complex psychiatric problems”. Problems with the coordination between home-care organizations and hospitals or general practitioners were also mentioned: hospitals sometimes did not accept patients because of physical neglect and sent them back home without consulting home-care nurses. Or a hospital discharged a patient without consulting the home-care organization, even though they knew that adequate home care was not possible. According to the interviewees, general practitioners also regularly said that if a patient chose to live in a dirty house, this was his or her own choice.

  1. C.

    Insufficient competencies

Insufficient competencies of home-care nurses were also mentioned as problematic (Fig. 1). When it comes to knowledge, interviewees agreed that home-care nurses lacked knowledge about the potential underlying problems of dirty-home patients. This had to do with the often complex, multiple problems, which sometimes went on for years and could originate in a patient’s youth. For example, it could be cognitive or functional decline, psychiatric problems, but also addiction, grief, debts or combinations of different problems. As a social worker explained, that knowledge is needed to recognize the seriousness of the situation: “I think there is a bottleneck there in the knowledge about people with psychiatric problems… often chronic or addiction problems of the same kind. Yes, that’s a problem that won’t go away or can’t be solved so easily”. Lack of knowledge made it difficult to know when to engage professionals from other organizations. As mentioned earlier, lack of knowledge also applied to knowledge about the services available in the community. Even if there was a team within the community that provided assistance to people with dirty households, home-care nurses usually were not aware of this. Another knowledge gap concerned the possibilities of discussing a patient with a dirty home with professionals in other organizations within the boundaries of privacy legislation. According to the interviewees, a lack of knowledge prevented home-care nurses from discussing their feelings and doubts with colleagues and contributed to stigmatizing patients within the home-care team.

Home-care nurses also generally lacked skills to adequately respond to patients with a dirty home. They found it difficult to motivate patients to clean their houses. They also found it difficult to respond if it turned out that patients had not cleaned up their home sufficiently despite agreements that had been made. Another skill that was often lacking was an ability to discuss the patient’s situation with colleagues without prejudice.

Fig. 1
figure 1

Three main themes and ten subthemes characterizing the problems faced

Solutions

The focus-group sessions with professionals and the individual interviews with patients and their representatives revealed seven possible solutions (Table 3). First, there was a general plea to strengthen the collaboration between organizations in the region. This was seen as a prerequisite for providing personalized, integrated care, which was considered necessary to provide good quality care to patients with dirty homes. Due to the differences between regions (Table 3), cooperation agreements and the coordination of care are best made at a community level. All relevant parties should be represented, including at a minimum the public-health services, the municipality, organizations for psychiatric care, organizations for domestic care, general practitioners, hospitals, housing corporations, police and the fire brigade.

Table 3 Solutions letting home-care nurses and their organizations provide adequate support and care to patients with a dirty home

Second, home-care nurses should consult other professionals sooner. Patients, representatives of patients, and professionals emphasized the important role of home-care nurses in identifying problems with a dirty home and in quickly calling in other professionals. They emphasized that home-care nurses often visited a patient when the condition of the home had clearly been bad for a long time. It often made little sense to wait and see if the patient started to tidy up. The recommendation from professionals in the focus-group discussions was “Dare to act“. Home-care nurses should share their concerns with colleagues. The general advice was to quickly contact a central reporting point in the community. There should always be at least a central telephone number and ideally there should be a specialized team with knowledge and expertise about dirty homes, where a home-care nurse can anonymously discuss a patient or ask someone from the team for a joint home visit. An experienced professional can often assess properly what is going on and what follow-up steps can be taken. An advantage of this can also be that in extreme cases the experienced professional can suggest the need for cleaning or additional help, while the patient’s relationship of trust with the home-care nurse remains.

In addition to the first two recommendations, it was emphasized that a case manager is needed to arrange multidisciplinary and inter-organizational collaboration at the patient level. All professionals who are already involved with a patient should be consulted and should discuss, among other things, the safety of the situation, the underlying problems and the possible solutions and appropriate help, in part to prevent a recurrence of the situation. For this it is necessary that someone coordinates the care. According to the focus-group participants, the professional who is best placed to fulfil this role depends on the specific situation of a patient. Sometimes the home-care nurse can take the lead (for example in the case of elderly people with physical problems), in other cases a psychiatric nurse is more appropriate (for example in the case of hoarding) or a nurse or social worker from the public-health service (for example if a patient refuses help which proves necessary due to safety risks).

A fourth recommendation is to provide person-centred care, that is to say: focus on the wishes and needs of the patient. It was emphasized that it is important that the patient sees the same professionals with whom the patient gets along well. New professionals should be introduced where possible by a trusted professional, preferably the case manager. First of all, work must be done on building a relationship of trust with the patient. To gain confidence, it is important to take enough time to talk to the patient, to listen and to be empathetic. The dirty home conditions and the possible risks must be mentioned, but without judgement. At the same time, home-care nurses can indicate that they want to help think about possible solutions. It is a search for the right balance: some urging can sometimes also be a relief for a patient because his or her situation will change. Since the condition is usually not resolved overnight, home-care nurses also have to think ‘outside the box’, for example, by looking at whether it is possible to shower in a community centre or to provide wound care in a general practice.

The professionals agreed that extra time should be allocated to be able to provide person-centred care. Extra time is needed to get to know the patient and gain his or her trust. The care itself often also takes more time, for example if a patient does not cooperate or when time is needed to find or create a place to provide the care. Investigating the underlying problems, consultation within the home-care organization and collaboration with professionals from other organizations also require extra time.

Furthermore, the development and use of tools and support services help home-care nurses provide integrated person-centred care to patients with dirty homes. The professionals emphasized that these tools and support services only help if they are supported by the management of the home-care organization. Employers should take a clear position when it is not possible to deliver care in a particular situation, and support the nurses in this. Every home-care organization should have a step-by-step plan detailing what home-care nurses can do when the house is too dirty. Such a roadmap should contain tools to describe the level of dirtiness (such as the Clutter-Hoarding Scale, [16]), criteria for giving and refusing home care (for example answering the question, “Can I do my job as intended?”) and a map of organizations in the community. Another type of tool supports collaboration with all the people involved. Examples are a cross-organizational communication app, a list of all professionals and family members involved with the patient, or a sociogram to map and involve the patient’s social network. In addition, there should be a person in each home-care organization who can be consulted by home-care nurses if they have a patient with a dirty home. This person knows the procedures and the agreements with other organizations and can refer home-care nurses to an external expert. This person can possibly pay a home visit to assess the situation. If necessary, this person can also organize lessons by, for example, the public-health service, psychiatric services or the fire brigade.

Finally, the competencies of home-care nurses should be increased. The professionals agreed that the problem of dirty households is too complex and too rare to train nurses to become experts. Nurses should nevertheless have basic knowledge and skills about people with dirty households. This should cover, among other aspects, the possible underlying problems, the right approach and relevant legislation and regulations in the field of privacy.

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