Background
Because of their poor health and social vulnerability, people who are homeless require specific care. In this paper, we refer to homeless people as those who have unstable housing. They may use social day or night shelters including hostels, or avoid these accommodations and stay on the street. People living and sleeping on the streets or without fixed addresses also belong to this group. Unhealthy lifestyles, addiction and somatic morbidities such as lung diseases or cancer are common among the homeless [
1‐
3] and morbidity rates are high [
4‐
7]. Moreover, intellectual disabilities and mental health problems are more prevalent in this group when compared to the general population and many homeless people face financial problems [
8‐
11]. Homeless people therefore need complex, multidimensional care. However, several studies have shown that homeless people have unmet care needs and poor access to care, and (partially) avoid or underuse this care [
12‐
19]. Care avoidance is defined as partly or completely turning away from threat-related cues, which results in not being able or willing to be involved in care that is necessary [
14,
20]. Care avoidance can be experienced as a problem by the homeless person (e.g. incomprehension or unmet needs) or the professionals (e.g. refusing necessary care or cancelling appointments). In this article, we use the term ‘care avoidance’, by which we mean ‘no access to care due to unwillingness or inability of homeless people or professionals, or the interaction between them’.
Care for the homeless can be divided in two types: i) social care for day and night shelters, housing, income and (social) activities on the one hand, and ii) medical care for addiction, mental and physical health issues on the other hand [
21], which we call ‘healthcare’. Until now, most studies have focused on care avoidance in the context of healthcare. However, care avoidance can occur in broader areas, such as social issues, financial issues and housing issues. It is therefore crucial to cover all these areas by focusing on care avoidance in the context of both social and health care.
Although some evidence is available on unmet care needs of homeless people, poor access to care, and avoidance or underuse of care [
12‐
19], studies into the nature of their care avoidance are scarce. This might be explained by the fact that it is hard to include homeless people who avoid care as a participant due to unfamiliarity with the care system [
22,
23]. In the Netherlands, there is anecdotal evidence that spiritual caregivers and street pastors are better able to reach homeless people who avoid care than other professionals, due to activities such as establishing contact by visiting homeless people on the streets, and by providing help with practical matters. The nature of the contact between the homeless and both spiritual caregivers and street pastors is often characterized by low-threshold conversations and respectful relations without the consequence of being referred to care. Including them in a study could provide more insights into homeless people’s perspectives as well as those of care and healthcare professionals.
This study aims to get insight into the reasons for care avoidance, ways in which it occurs and how to deal with it by interviewing spiritual caregivers and street pastors. This provides more insight into the phenomenon of care avoidance according to people close to them, while at the same time more insight into methods is given for reaching this target group. The research questions were:
1.
Why do spiritual caregivers and street pastors think homeless people avoid social care or healthcare?
2.
Based on their experiences with reaching care avoiders, what suggestions do spiritual caregivers and street pastors have for making care accessible for homeless people who avoid care?
Results
After rereading the manuscripts and three stages of coding, common themes were grouped together following the research questions: factors that hamper accessible and appropriate care and possible solutions as suggested by respondents. For both categories a clear distinction could be made between themes related to characteristics of homeless people and characteristics of the care system. Furthermore, as several respondents commented on the term care avoidance, we considered this as a separate theme. We will address this theme first.
Care avoidance – An ambiguous term
“Care avoidance” was considered to be stigmatizing by the participants, focussing primarily on the responsibility (or lack thereof) of homeless individuals rather than design issues of the care system related to care accessibility and usage. According to participants, several issues prevent homeless people from being involved in care including the way the care system functions and the fact that it can be difficult to access care. Participants therefore emphasized the importance of also looking at the inadequacy or inaccessibility of care.
“So we’re building a system, and the homeless are left outside it because they either can’t fit or won’t fit in it – or both. And then we punish them by saying that they’re avoiding care.” (P15, homeless outreach worker)
“They aren’t care avoiders, they’re just careful about what care they accept. Saying it’s care avoidance is very negative. That says something about the person themselves, as if they don’t want any care. What I often see is that people look for care that suits them, which may not exist.” (P20, homeless outreach worker)
It is therefore important to realize that care avoidance is about homeless people for whom care is not appropriate or inaccessible, and that it is not only a problem of homeless people. Participants gave many different reasons for care avoidance among the homeless, which we have divided into characteristics of homeless people and characteristics of the health system that hamper accessible or appropriate care. In reality, care avoidance is often a combination of these factors.
Characteristics of homeless people that hamper accessible or appropriate care
The analysis showed six themes relating to homeless people themselves that might play a role in care avoidance. The five themes are shown in Table
3 below, each theme is illustrated with a quote. As a first theme, the majority of the participants mentioned that this group is diverse and that no stereotype exists (Table
3, Q1). There are people from all sorts of cultures, ages, with different medical and social problems, and with several reasons to avoid care. Despite this diversity some common denominators related to care avoidance did emerge from the interviews. As a second theme, a common factor among homeless people who avoid care is the complexity of their problems and the number of diagnoses and labels. (Table
3, Q2). Becoming homeless is often related to a variety of problems that are either medical or social in nature, such as a combination of psychiatric symptoms, addiction, intellectual disabilities, not having insurance, having debts, and housing deprivation. Also, being uninsured or undocumented was mentioned as a barrier to care. The stress and complexity of what is going on often make it difficult for homeless people to find solutions themselves. Besides, many homeless people have already been involved in healthcare for a long time, and have tried several social or medical services without success. They are often disappointed because they are not treated equally and they feel disparaged by professionals.
Table 3
Quotes on characteristics of homeless people that hamper accessible or appropriate care
1. No stereotype | Q1 |
“Care avoidance isn’t a single big group you can tackle in one go. The pattern varies hugely from one person to the next.” (P16, spiritual caregiver)
|
2. Complexity of problems | Q2 |
“I’d associate care avoidance with significant medical problems. They’ve also often been through a lot of psychotherapy and mental care already. They’ve seen it all before.” (P24, street pastor)
|
3. Other priorities | Q3 |
“If you’re homeless, you have to be ready to do things for your health that you don’t actually like. If they’d had normal lives, it maybe wouldn’t have been do difficult, but they don’t think it’s worth it. Scoring is often more important.” (P22, formerly homeless person)
|
4. Maintaining self-control | Q4 |
“I don’t think that they’re afraid to go to a doctor. They’re afraid that it’ll end up restricting their lives, you know? Suppose the doctor says you’ve got to be admitted to hospital... well, there’s no boozing or smoking in hospital. That lifestyle will be changed drastically – the doctor’s restricting what you can do, because you’ve got to go to hospital. They don’t want that. They don’t want to be tied down; they want to be able to respond when they think they need to. Maybe they’ll do nothing all day, but you never know – maybe the one time that they do have an appointment is just the moment when they could nick something or score or whatever. Yup, then they’re stuck with the appointment and they don’t think it’s right” (P22, formerly homeless person)
|
5. Fear of stigmatization and treatment related to psychological or psychiatric problems | Q5 |
“For mental things in particular, I think that people do avoid care. So it’s sometimes not so much care avoidance as denial and lack of an understanding of their illness as well. That’s often the case with psychiatric conditions. People who hallucinate but have a lot of difficulty admitting they’re hallucinations and who feel they’re being pigeon-holed. But if it’s a perception that you’ve got but they haven’t, then they feel they’re being accused of inventing things that they think are absolutely true. But, well, they don’t think there’s much point talking to a doctor anymore because they won’t be taken seriously.” (P6, street pastor)
|
The third theme regarding care avoidance was that homeless people often have other priorities e.g. related to food or substance abuse due to their survival mode, which means living day to day and fulfilling basic needs (Table
3, Q3). Moreover, maintaining (self-)control in difficult circumstances (Table
3, Q4) was frequently mentioned as a fourth theme regarding reasons for avoiding care. As a fifth theme, it was stated that in cases of psychological or psychiatric problems homeless people might fear stigmatization and compulsory treatment and therefore stay away from care (Table
3, Q5).
The analysis showed seven themes that concerned the relation between care and healthcare systems and care avoidance. The seven themes are shown in Table
4 below, each theme is illustrated with a quote. Overall, participants mentioned that many homeless people experience ‘the healthcare system’ as inaccessible and inappropriate, i.e. not meeting their needs and – directly or indirectly – leading to care avoidance. According to participants, the inaccessibility of the system is caused by several factors listed below.
Table 4
Quotes on system-related characteristics that hamper accessible or appropriate care
System is complicated | Q7 |
“It’s complicated finding the right organization as well. There are several options for your dole money or day care, for instance. Then there are the people from different situations, or from prison, where the probation service gets involved. Or there are people with addictions, where the addiction care service gets involved. Or the housing corporation – evictions or whatever – where a district team will sometimes have had a role too. And then you’ve got to find your way. So where do you start?” (P20, homeless outreach worker)
|
Conditions and requirements of organizations | Q8 | “They’ve already said to start with that you should kick the drugs and then maybe we can help you with the mental problems. People can’t comply with those conditions – what’s going to replace them? They aren’t going to stop using because they’re suffering from sweaty feet. They’re going to keep using because they’re got an issue that they have to resolve, i.e. coping with daily life and the problem of what’s going on in their heads.” (P15, homeless outreach worker) |
System is inappropriate | Q9 |
“Maybe it’s the level of education of the personal supervisors as well – that they’re simply not qualified enough to be able to deal with the entire spectrum of both mental and physical complaints. Ordinary staff, supervisors, they’re sitting there looking at a lump and wondering whether it means that a doctor is needed or not. They’re not really the people who should be dealing with those issues.” (P25, spiritual caregiver)
|
Time pressure of professionals | Q10 |
“The caregivers would also want to do more, but there simply isn’t the time. They only come along to tackle the issues of the moment and dole out medication. The homeless see perfectly well that they’re short of time too. They complain hugely about it, that the caregivers are often not really available.” (P25, spiritual caregiver)
|
Attitudes of professionals | Q11 |
“Many homeless people’s experience is that if they go anywhere – to a doctor or hospital or dentist – they get treated with a degree of suspicion.” (P4)
|
Noisy and busy shelters | Q12 |
“Some people actually find sleeping on the streets quite peaceful, because they think the care places are much too unsettled and too busy and too many other people snoring and far too much stuff that they don’t want.” (P8, spiritual caregiver)
|
Patronizing and lacking participation | Q13 |
“And one of these caregivers will then think, ‘I’m going to take you by the hand like a little kid and tell you how you have to do it.’ And if you do that to a fifty-year-old bloke who may have fought in a war or whatever, you’ll soon lose their respect. You mustn’t lay down the law for people. You can give them advice, though.” (P21, homeless outreach worker)
|
The first theme refers to the complexity of the system for homeless people (Table
4, Q7). Care for homeless people is, as was stated, complex, multifaceted and scattered in its organization with a wide range of shelters, hostels, psychiatric institutions and nursing homes. In addition, consultation hours vary and helpdesks have limited and different opening hours. This is especially difficult for homeless people because of their psychosocial vulnerability including their intellectual and mental disabilities. Some specific problems related to the system were reported including regional bonding (which means that someone who is homeless is taken care of in the region they come from, this implies that care cannot be provided in other region), arranging things via the Internet, different locations for arranging different things, limited opening hours, waiting lists, protocols, rules and bureaucracy.
Secondly, participants reported that the conditions and requirements that people must adhere to in order to get access to care can be a reason for homeless people avoiding care (Table
4, Q8). These conditions are e.g. paying off debts in a certain way, detoxing, naming care needs and concrete questions, and going through processes quickly. Participants believed that enforcing such conditions and requirements meant care organizations were not sufficiently considering the needs or capabilities of homeless people.
Another theme that appeared from the interviews is that even when homeless people find access to the regular care system, the care they receive is often not appropriate, i.e. not adapted to their care needs. Their health problems often expand beyond the borders of individual somatic and psychiatric specialists, warranting a tailored and multidisciplinary approach in which interdisciplinary communication should be secured (Table
4, Q9).
Time pressure among professionals proved to be a recurrent barrier to providing appropriate care for the homeless. According to participants, current legislation and the way care is organized and financed contribute to heavy time pressure on professionals (Table
4, Q10). Professionals are bound to a specific amount of time, but as care for this population is more intensive and complex, it takes more time. As a result, there is little time for good conversations. Homeless people, however, generally consider real interest, attention and time for small talk and conversations to be very important. To achieve this, not only time but also the attitude of the professionals is important (Table
4, Q11). According to our participants, homeless people could experience professionals’ attitude as suspicious, asking questions unpleasantly, an attitude of knowing better, and applying their own standards. A lack of patience and creativity hampering finding solutions was also reported to be a barrier.
Many participants mentioned that homeless people perceive the day and night shelters as busy and overcrowded. Often, there is unrest (fights, disputes and security), little privacy and they have to be very careful when it comes to property. Moreover, professionals intend to immediately start arranging things and setting goals, which can increase stress. Homeless people, however, are in need of rest (Table
4, Q12). Avoiding busy shelters is a way of reducing stress.
Finally, while engagement and equality are very important values for homeless people, they are often left out in decision-making. According to participants, homeless people feel inferior, patronized and not taken seriously by professionals (Table
4, Q13). Consequently, they tend to avoid care professionals. According to the respondents, homeless people should have the right to be involved in formulating their needs and making decisions together with the professional despite their psychosocial limitations or issues.
Recommendations for facilitating access to homeless people who avoid care
Our second research question concerned suggestions of spiritual caregivers, street pastors, homeless outreach workers and formerly homeless participants for how professionals can improve the accessibility of care for homeless people. As indicated in the previous section, care avoidance has no single cause but is caused by factors related to the homeless people, the health system, and the interaction between them. Recommendations are aimed at a wide variety of professionals working in medical care, social assistance or a combination of these. In addition, each organization and professional has other sources, possibilities and limitations. Thus, for each organization and professional, another combination of recommendations will be relevant. In addition, a number of recommendations aimed at policy makers are addressed below. The suggestions for improving accessibility are categorized similarly. Firstly, we will discuss the suggestions related to the characteristics of homeless people themselves. Secondly, we will discuss the system-related suggestions. All themes are mentioned in Table
5, and illustrated by quotes.
Table 5
Quotes on suggestions for making care more accessible to homeless people who avoid care
Characteristics of homeless people | Tailored care | Q1 |
“Wouldn’t it be nice if the care system could offer more tailored solutions, saying ‘What would help you? And how can we work together so that here’s a place where you can get it. Get what would help you.’ Within reason, of course, but without saying it’s our way or the highway. Instead, you say there’s supervision but we’ll take a look at things with you to see what’s the best way of arranging it. So that it works for you.” (P1, street pastor)
|
| Building relationships | Q2 |
“Suppose I’ve found you and you very often sit at a particular time on a certain bench in the part, ‘cos that’s where you are with your two bags. Well, then you’ve not got to start by saying, ‘Come along with me.’ No, I think you’ve first got to ask if you can sit there with them. And maybe you don’t say anything else to start with. Getting someone to come and do what you want is still a long way down the road at that point.” (P19, spiritual caregiver)
|
| Setting limits, but no rejection | Q3 |
“We speak to people about their behaviour, we apply sanctions, but there’s one thing that we always make clear: you can always come back again. So it’s crucial that they know that the relationship will never be put under pressure. It can therefore mean that we ban people ten times, that they do something wrong ten times, but you can always come back again.” (P13, homeless outreach worker)
|
| Humanity, dignity and equality | Q4 |
“It’s pretty awkward for them; they’re never normal. So, well, they need in some way or other to be able to give and get something back. And so that they’ve got lots of skills and things that they can use, even if they are care avoiders.” (P23, homeless outreach worker)
|
Characteristics of the system | Clear information, explanation and communication | Q5 |
“Just be honest about it, like ‘It’s not possible right now with these waiting lists, but we’ll see what steps we can take that will really help you.’ And being straight up: ‘I can make this or that agreement with you now that we’ll take a look, because you want something to do. Right, I can call them now and see if there’s a place and I’ll call you, make an agreement with you, such and such a place and time, that’s when you’ll get the details from me.’ Short timelines, clear communication and clear agreements.” (P27, formerly homeless person)
|
| Change of policy and legislation regarding to available time | Q6 |
“My experience is that individual care providers are genuinely motivated, but that it’s often the structures of the institutions – imposed by legislation and regulations and driven by costs above all – that make it tricky. So it’s not the individual care providers, because they’re people who are really trying [to make the process less complex, more accessible, working from a relationship of trust, looking to see what the person themselves needs, communicating in understandable terms]. But, well, we need to set up the legislation and regulations and the funding so that it’s possible.” (P3, spiritual caregiver)
|
| Quiet shelters | Q7 |
“All the crisis shelters are in groups: several people sleeping in the same room. And it’s difficult there, it’s sometimes difficult to tailor the care there to suit... there’s just too little money for it, actually. A crisis shelter like that, there are just two of them for sixty people, so there’s no chance for any one-on-one supervision or whatever.” (P21, homeless outreach worker)
|
| Attitude and treatment by professionals | Q8 |
“We go to the station at five in the morning, at the times and moments that really suit them and not just during office hours. Care avoiders are often up and about at night, and they’ll sleep during the day, simply because sleeping in the daytime is safer. The other thing we do is start normal conversations with these people. So it’s not like ‘What do you need to get out of this situation’, but ‘How was your day? What are you going to do?’ And don’t think people won’t appreciate it, that it’s not part of the world they live in: it’s very much in their kind of world, because all day long they’ve got a caregiver or a cop or a guard hassling them, and never a normal person with a normal conversation.” (P15, homeless outreach worker)
|
| Self-reflection of professionals | Q9 |
“The caregivers also have to take a bit of a critical look at themselves. Like, well, I can’t do this; it isn’t working; there’s no click. We’re not making contact. So keep hacking away at those knots, and you mustn’t see it as failure.” (P27, formerly homeless person)
|
Discussion
Spiritual caregivers, street pastors, homeless outreach workers and formerly homeless people, experienced the term ‘care avoidance’ to be stigmatizing. Care avoidance seemed to focus only on the homeless and not on the system, while inaccessibility of the system is a barrier to involvement in care. This study shows that care avoidance was not only related to the characteristics of homeless people (e.g. complex problems, other priorities), but also to system-related characteristics (e.g. complicated system, conditions and requirements of organizations), both impeding care involvement. This supports the findings of Schout et al. [
28], who introduced the term ‘care paralysis’, meaning the inability of professionals in social services to help people with multiple and complex problems. By using both terms simultaneously, i.e. care avoidance and care paralysis, it is more clear that not only characteristics of the homeless but also from the system must be addressed in order to improve care avoidance. Moreover, this might be experienced as less stigmatizing.
Previous studies in the field of care avoidance, although carried out among other populations, show similar reasons for care avoidance, such as mistrust or a lack of confidence, negative evaluations of the quality of care and previous negative experiences with care providers’ communication styles and seeking healthcare [
29‐
33]. Additionally, several studies also reported a low perceived need to seek medical care as a reason to avoid care [
30,
32]. However, existing literature also provides some reasons for avoiding care that were indeed confirmed by our study but were less evident such as a fear of serious illness or of thinking about dying [
30,
33,
34], insured lack of (health) insurance and being illegal [
31,
32].This was most likely due to the focus of the interviews which was more on the complexity of various problems among the homeless, as a result of which a lack of health insurance and illegality appear less prominently as reasons for care avoidance. Since the reasons for care avoidance identified by this study are similar to the reasons previously reported for other populations, the question can be raised whether care avoidance among the homeless is essentially different from care avoidance among other populations. Nevertheless, the multifaceted nature of the problems, the focus on psychosocial barriers, and the need for a multidisciplinary approach, respect, understanding and trust do distinguish this group from other populations. Ye, Shim & Rust provide evidence for the focus on psychosocial barriers to care among this target group. They mentioned that people with serious psychological distress were more likely to report psychosocial barriers to care [
34].
Participants made suggestions that could help reach care avoiders, related to characteristics of both the homeless and the system. The person-related characteristics include tailoring care and building relationships at an early stage. It is often necessary to build a trustful relationship before care can be provided. Meeting the practical needs of the homeless person is key in building this relationship. When care is provided, the needs of homeless must be leading [
35,
36]. Furthermore, setting limits to behaviour without rejecting the person, and an attitude reflecting humanity, dignity and equality were also important factors in making care more accessible and long-lasting. Regarding system-related characteristics, clear information and communication to homeless people who avoid care are important for making care more accessible. Other system-related suggestions include quiet and less busy shelters, unthreatening attitudes and treatment by professionals, self-reflection by professionals and finally a change of policy and legislation regarding available time. Other studies in care for the homeless have also reported the need for respect, understanding, trust and easier access to health services [
37‐
39]. Not being able or willing to be involved in care has several reasons, which are mainly “demands, thresholds and fragmentation of services, which hinder the accessibility of healthcare”, and more specifically “disputes, conflicts, suspicions about the intentions of healthcare professionals and a mismatch between expectations and provision of care” [
14]. Our findings confirm a previous study on care avoidance in psychological care by amongst others homeless people, which highlighted the importance of establishing contact and winning trust [
14] and reported that care avoidance is often caused by the interplay between characteristics of both the clients and the system. It is important to notice that many of the solutions can only be successful if health care professionals realize that they have agency and have an important role in achieving improvements. Thinking beyond the individual causes of care avoidance, i.e. either related to the homeless person or the system, but also having attention for the interplay between those causes is crucial.
While several respondents of our study reported the term care avoidance to be problematic, respondents of another study did not report this [
14]. This does raise the question whether we should discard the term ‘care avoidance’ and use more neutral terminology related to the accessibility of care for different target groups, or at least emphasize that care avoidance can be rooted in both personal and system characteristics.
To our knowledge, this study is the first to explore the reasons for avoiding care and the way to overcome this from the perspective of spiritual caregivers, street pastors and homeless outreach workers, and is supported by experiences of formerly homeless people. It is a strength of our study that we were able to expand the respondent group, i.e. including also homeless outreach workers and formerly homeless people. Together, the participants interviewed were people who view both the perspective of the target group and the world of professional care. It therefore gives practical suggestions for improving accessibility of care based on the non-threatening working methods used by these participants. This was confirmed in the interviews with the formerly homeless participants, who stated that the spiritual caregivers and street pastors were the people who were most closely attached and committed to them, and who understood them well. A limitation of our study was the different nature of care that street pastors and spiritual caregivers provided in comparison with other care providers in medical and social care, who often experience more obligations and more time pressure. This might make it difficult for the latter to implement the suggestions for improvement. However, several of the recommendations can be implemented in any event, e.g. attitude. Moreover, although building relationships might require an investment at first, this may strengthen relationships and contributes to providing more appropriate and more accessible care.