Introduction
One of the residents at a group home for individuals with intellectual disabilities (ID1) is a frequent visitor to a local pub. At the pub, the man enjoys socializing with the regulars and the pub owner. However, his occasional unsteadiness when walking back to the group home has worried the staff. A recent incident resulted in a leg injury, but worse things could happen, he might be robbed or assaulted. Staff at the group home struggle to balance his right to make his own choices with keeping him safe. He can visit the pub, socialize with whomever he chooses, and go home as he likes, but staff need to ensure his well-being. How can they support him without taking away his self-determination and integrity?
The fundamental premise in this article, as illustrated by the example above, draws on a key aspect of the disability policy, namely that every individual should have the right to make decisions concerning their own lives. This is a social policy goal outlined in the Swedish Act concerning Support and Service for Persons with Certain Functional Impairments (Swedish Government 1993a), hereafter known by the Swedish abbreviation LSS. The goals of self-determination and full participation in society are also emphasized in the United Nations Convention on the Rights of Persons with Disabilities (2006; CRPD). However, the task of enabling residents to achieve the goal of self-determination at group homes for adults with ID can be challenging and complex. Self-determination, as a concept, has many meanings. Burke et al. (2020, 176) define self-determination for all individuals, regardless of disability, as associated with skills such as “choice-making, decision-making, problem-solving, goal setting and attainment, planning, self-management, self-advocacy, self-awareness, and self-knowledge.” In this study, and in the context of group homes for individuals with ID, self-determination refers to how staff enable residents to make decisions about how they want to live their lives. This includes choices related to what, when, who and how support and assistance should or should not occur. Importantly, self-determination emphasizes a strengths-based approach to the person’s own power (Larsson 2021; Puaca, Palmqvist and Carlén 2023; Wehmeyer and Shogren 2016).
In parallel, ethics plays a crucial role in LSS services, balancing the interplay between support and individual rights. It encompasses society’s collective norms on proper behavior and justice (cf. Sépulchre 2022). What we can see in the example is that ethical dilemmas in LSS services arise when there is no clear-cut right or wrong, and definitive solutions remain elusive (cf. Blennberger 2005; Guttmann 2013). Frontline staff are often the first ones to face these dilemmas. Tensions arise when staff think an individual cannot understand or consider the potential future consequences of their immediate choices. Tensions occur between the residents’ ability to make informed decisions and staff’s responsibility for their well-being and safety, as seen in previous Scandinavian research (cf. Altermark 2016; Björne 2020; Giertz 2012; Engen, Rømer, and Jørgensen 2019; Erlandsson 2014; Gäddman Johansson 2021; Larsson 2021).
In this article, we recognize that ethical dilemmas are a natural part of interactions between staff and adults with ID. Recognizing this is essential for providing support to uphold residents’ rights. Our study focuses on everyday events in group homes, investigating how frontline staff identify and encounter ethical dilemmas during their daily interactions with adults with ID. Inspired by the theoretical framework of ‘closeness as an ethics’ and its significance in ethical dilemmas (cf. Vetlesen 1997), we explore how frontline staff perceive and describe ethical dilemmas in their everyday work. Our research questions include: What experiences do frontline staff consider ethical dilemmas? How do ethical dilemmas manifest in their daily work at group homes? How do they understand and describe these experiences?
Previous research, background and theoretical framework
Supported living for individuals with disabilities requiring extensive support is regulated in the national social legislation in Sweden, known as the “LSS Act.” LSS is supposed to reflect a more humanist and non-paternalistic perspective in relation to people with disabilities (Larsson and Larsson 2024). The act emphasizes the municipality’s responsibility to provide specific measures and protection for individuals with disabilities. Housing options with Special Services for Adults (Swedish Government 1993a, Section 9 § 9) provide individuals with a residence allocated by the municipality. In the legislative preparatory work (Swedish Government 1993b) three primary forms are outlined: “Group Housing,” “Service Housing,” and “Other Adapted Housing.” In this study, we focus on the first two which are variations of group homes, both of which have staff present 24 hours a day to meet residents’ individual care needs and to facilitate recreational, cultural activities and active participation in society. In “Group Housing,” residents’ private apartments—including bedroom, bathroom and kitchen—are organized around communal spaces like dining areas, shared TV rooms and corridors. This layout encourages daily interaction with staff and neighbors. In “Service Housing,” residents have access to communal areas, but they have separate exits and are not required to meet with staff or neighbors daily (Swedish NBHW 2002).
In addition to the overall Swedish social policy goals of achieving equal living conditions and full participation for individuals with disabilities, staff at group homes are also expected to support other objectives and norms, such as promoting employment and active leisure time. However, some individuals with ID may struggle to meet these expectations (cf. Alftberg and Hansson 2012; Barron 2001). If frontline staff are influenced by these societal norms like everyone else, then achieving another goal, “a life like others,” becomes a paradoxical mission for both frontline staff and residents (Altermark 2016; Björne 2020; Ineland 2007; Kittay 2020). Nevertheless, with support, these can access the same opportunities as everyone else (Hultman, Tideman and Eriksson 2022). The norm of viewing persons with ID as perpetual non-adults, regardless of their age, and neglecting their lived experiences and adult needs, has been problematized by Altermark (2016) and Lövgren (2017). Historically, the acceptance of responsibility for an individual’s decision-making—regardless of their approval—stems from the belief that they cannot predict consequences or reason logically (Lindqvist 2020; Lindqvist 2022).
At the same time, ethical dilemmas in caring for people with disabilities are a global concern (cf. Kelly 2016; Kittay 2020; Rogers 2016; van der Weele et al. 2021). In our article, which focuses on research within social work, we explore an area where ethical dilemmas have been extensively studied (cf. Bergeron and Gray 2003; Blennberger 2005; Lindwall 2020; Neuman and Bryen 2022). Our specific focus is on the ethical issues that arise from close interactions between staff and adults with ID living in group homes. While some Scandinavian studies share perspectives similar to ours, they may not capture the complexity added by the dimension of closeness in frontline staff’s work, which we aim to examine (cf. Altermark 2016; Björne 2020; Engen, Rømer, and Jørgensen 2019; Erlandsson 2014; Gäddman Johansson 2021; Giertz 2012; Larsson 2021). For instance, Larsson (2021) investigated various methods used by frontline staff to assist individuals with moderate to severe ID to exercise their right to self-determination. Methods may address questions of ‘how’ to act, but we still need to handle all those situations when methods do not work. Gäddman Johansson’s study (2021) shifts the focus from the individual level to social interaction as an ongoing collaborative process, adopting a macro-level perspective, unlike our article which is based on a micro-level approach. By acknowledging “mutual shared vulnerability” between staff and residents, his research paves the way for viewing vulnerability as a way to develop rather than something negative. Here, the author refers to vulnerability as an aspect of interactions, not as a characteristic of the individuals involved. Engen, Rømer and Jørgensen (2019) conducted research in two Danish group homes specifically focusing on factors that enable or hinder staff in providing individual care and support while managing residents’ right to self-determination. They identified two central themes. The first, ‘Care under Pressure,’ relates to instances where staff strive to help residents lead daily lives according to prevailing adult norms. Staff members work hard to meet residents’ needs, even when faced with challenges. The second theme, ‘Withdraw from Care,’ refers to situations where residents’ oppose the care offered, often in a threatening manner. Staff may then justify not providing care, by aligning their actions with the residents’ right to self-determination. In summary, the study sheds light on the complexities faced in daily work at group homes for adults with ID, as staff try to balance care provision and residents’ autonomy.
Considering the points above it is important to recognize that the concept of “care” is ambiguous and requires further study. It has not always been well-received within the disability rights movement, where it has been seen as paternalistic and stigmatizing (cf. Oliver 1989). However, the term is frequently used in official descriptions of activities under LSS. When “care” also relates to assistance, support, and similar concepts, it does not necessarily carry the same negative connotations. This distinction highlights “care” as a need versus “care” as a right (cf. Hay 2019; Kelly 2016; Kittay 2020; Rogers 2016).
In contrast to the aforementioned studies, this article examines the importance of considering ethics that focus on the concept of closeness between staff and residents (de Beauvoir 1962; Hansson 2011; Lis 2004; Mol, Moser and Pols 2010; Vetlesen 1997). This theoretical framework has a long tradition within phenomenology, for example in the works of Levinas and Heidegger but also in feminist relational approaches to ethics (Vetlesen 1997). Our approach involves hands-on understanding of ethical dilemmas in the context of interactions between staff and residents, where each individual sees themselves reflected in the Oher.
Returning to the example in the introduction, the responsibility the staff members feel for the man arises from the closeness to ‘the unique Other’ as Vetlesen (1997) puts it. Instead of delving into the epistemological background of why and how work might be better organized and structured, we argue that we need to explore ‘closeness’ to understand some ethical dilemmas in frontline staff’s everyday work. By focusing on this ‘closeness,’ social work researchers can better understand how ethical dilemmas manifest in the everyday work of frontline staff.
Method
To explore how frontline staff understand and respond to everyday ethical dilemmas, we used a sequential focus group interview method. This method involves the same groups of informants meeting on several occasions with intervals in between. The researcher can ask the group members to reflect on specific topics brought up in previous focus group interviews and discuss them in later meetings. This approach sets our study apart from previous research by aiming to capture the informants’ firsthand experiences of ethical dilemmas without imposing researchers’ interpretations (Hollander 2004).
The study’s focus groups comprised co-workers from the same group homes. We intentionally selected colleagues who were already familiar with each other, as they were accustomed to discussing work-related issues. This approach empowered participants to construct their own narratives and arguments within the group, minimizing the influence of researchers. However, a potential drawback of using existing work groups is that participants may avoid discussing sensitive situations to prevent discord or criticism among colleagues (ibid).
Sampling and participants
Frontline staff from two different group homes in a large Swedish municipality participated in our study. A secretary at the municipal department helped select suitable residences. Before the recruitment process began, the secretary was given a ‘wish list’ from the first author, specifying ‘different types of group homes’2 to cover a wide range of ethical dilemmas. The facilities differed: one was classified as “Service Housing,” and the other as “Group Housing.” We acknowledge the potential bias in relying on someone else’s personal choice of facilities with this approach.
The first contact with the two selected group homes was made by sending the managers an e-mail, which included a brief presentation of the research and the researchers. Once the manager gave approval for the residence to participate, the next step was to contact the frontline staff in superior positions3 to request help in recruiting four employees, in addition to themselves, who would then agree to attend three sequential focus group interviews. Our recruitment strategy prioritized diversity across various dimensions, including job roles, duration of professional experience, educational background, age group, and gender. We believe that a diverse workforce provides a broader foundation for researchers to understand ethical challenges, as they use a variety of words and concepts to explain phenomena.
In the first group home, the residents were relatively young adults, with an average age of around 30 years old. These individuals typically did not have significant physical disabilities. Their primary needs, for which they had been approved to receive support and services, focused on assistance with managing social interactions and meeting societal expectations to live as independently as possible. In contrast, the second facility was a more conventional group home for individuals with profound disabilities. The residents here required extensive daily care, including help with personal hygiene, housekeeping, dressing, medication management and meal preparation. The ages of these residents ranged from 45 to 75 years old, with most being over 65—indicating that they were past working age and not engaged in structured daily activities.
Data collection
The fieldwork took place in 2022, at the end of the COVID-19 pandemic. This timing required adjustments to the original research plan, set before the pandemic. Initially, all focus group interviews were scheduled as in-person meetings at 1–2-week intervals. However, due to pandemic-related constraints, three out of the six meetings were conducted online. Additionally, some intervals were extended to four weeks due to sick leave and increased workload at the residences.
Session 1. Understanding ethical dilemmas in group homes
The initial session for both focus groups took place online. A PowerPoint presentation explained key ethical concepts, including the meanings of ethics, everyday ethical dilemmas and ethical actions. The participants actively discussed these definitions. The session included various examples, categorizing everyday ethical challenges in group homes into three thematic areas. These themes were drawn from a mix of sources: the first author’s frontline experience at a group home, insights from colleagues, and narratives reported in the media. In more detail, the themes were as follows:
Ethical dilemmas linked to everyday situations at the group home. These included complex situations linked to food, drink, candy, alcohol, drugs, sleep patterns, clothes, medication, exercise, visitors, sexuality and relationships.
Ethical dilemmas in relation to the staff members’ work environment and the home environment of other residents. These included situations involving residents with difficulties in social relationships, such as understanding other people’s feelings and needs; residents whose behavior conveys threat or aggression, and residents who do not respect others’ integrity; residents with substance abuse problems or self-harming behavior; residents who socialize in ways and at times that disturb their neighbors; and residents who refuse support from staff, resulting in poor personal hygiene or neglected living spaces.
Ethical dilemmas in meetings with individuals outside, in the community. These included residents whose behavior might be considered abnormal, such as being too loud, using foul language, stealing or shoplifting items such as food or sweets, either in stores or from other people in public areas. They also included behaviors like nudity in odd situations or aggressive and threatening behavior toward others.
The advantage of this approach was that it gave a common starting point for the interviews. We are aware that by giving the informants these examples, we risked narrowing their focus, and thus their reflections and responses.
After the slideshow, the group participants were invited to reflect on the described situations. They were encouraged to identify any instances where they recognized similarities with their own experiences and to elaborate on how they related to these situations. Additionally, the participants were encouraged to share examples based on their professional encounters.
At the two initial online sessions, all ten informants from both residences participated—five in each focus group interview—and all three researchers.
Session 2. Frontline staff’s perspective
In the second session, we excluded ‘Staff in superior positions’ to foster an open environment where frontline staff could share their experiences without feeling constrained by higher-ranking colleagues. ‘Staff in superior positions,’ who typically hold leadership and coordination roles within the residence, were not present to ensure that other staff felt free to discuss their encounters openly. Prior to this session, we asked the frontline staff to reflect on complex situations they had personally experienced, particularly those they identified as ethical dilemmas. These reflections formed the basis of our discussions during the second session. Six staff members actively participated across these two focus groups. The first author and one of the other researchers attended one of the sessions, while only the first author was present at the other.
Session 3. Evaluating support and reflections
In the third and final focus group session, the ‘staff in superior position’ rejoined the group. Staff revisited the situations discussed in previous sessions, examining the support they had received from co-workers and the organization. The discussion covered what had been beneficial, whether they had felt a lack of support and how things might have been different.
One informant chose to conclude their participation before the third focus group session, and two were absent due to illness. Consequently, a total of seven staff members, along with the first author and one other researcher, participated in the two third-session group interviews.
Ethical considerations
The study received ethical approval from the Swedish Ethical Review Authority (The ethical approval Dnr is 2021-04828) and strictly adhered to the guidelines for good research practice outlined by the Swedish Research Council (2017) and the principles of the Helsinki Declaration, World Medical Association (2017). In practical terms, data protection and security were addressed in accordance with the Swedish Data Protection Act (Swedish Government 2018).
All participants in the focus group interviews were given both oral and written information about the study before deciding whether they wanted to participate. They all gave their written, informed consent to participate. Before each interview session began, the participants were reminded that their participation was voluntary and that they could withdraw it at any time without providing a reason (cf. Bell and Bryman 2007; Clement and Bigby 2013). Since all focus group participants, except the researchers, were colleagues from the same residence, they were familiar with the residents and understood the ethical dilemmas discussed. This approach was meant to enhance confidentiality and protect the residents’ dignity, as no names of non-participants were necessary. Only initials were used for both residents and absent colleagues. To ensure confidentiality and protection of residents’ integrity in this article, all participants have been assigned aliases, and quotes have been modified to prevent identification and objectification. All quotations have been translated into English and slightly edited for readability.
Analysis
The analysis of our study draws inspiration from reflexive thematic analysis (TA), as developed by Braun and Clarke (2019). This method, which is based on the broader TA framework established in their earlier work (2006), can be described as a systematic yet flexible analytical approach. It involves distinct steps, from immersing oneself in the data to producing coherent textual interpretations (Braun and Clarke 2022).
From the outset of our analytical process, all three authors actively participated in the focus group interviews, thereby gaining a shared understanding of the material. The initial transcription was undertaken by the first author, who also identified initial codes. This process included repeated readings of the interview transcripts, highlighting meaningful sentences and paragraphs. This resulted in a multitude of codes and preliminary themes.
Subsequently, the data were distributed to the second and third authors. Together, they collaboratively organized essential concepts into overarching themes. After several iterative rounds of discussion, we arrived at two central themes that provide a deeper understanding of how frontline staff describe, comprehend, and reflect upon ethical dilemmas in their everyday work. The second theme was further subdivided into three subthemes categorizing work situations where ethical quandaries arise.
The identified themes were as follows
Ethical dilemmas arise in relation to a large part of the everyday work of frontline staff.
Ethical dilemmas emerge most clearly when supporting residents in:
Supporting consent and preventing harm in interpersonal relationships
Supporting individual choice in a collective setting
Supporting a norm-breaking individual
Results
The significant role of closeness with residents in staff’s everyday work
As mentioned in the introduction, previous research has described the complex nature of the frontline staff’s mission, which involves balancing the assurance of everyone’s right to self-determination with achieving desired outcomes based on a normative view of good living conditions (cf. Altermark 2016; Bigby et al. 2019; Browning et al. 2021; Giertz 2012; Hastings 2010; Petner-Arrey and Copeland 2015). Drawing on our own experiences, particularly the first author’s work at group homes, we understood that this knowledge has not been adequately defined or given sufficient consideration in practice.
The goal of the introductory slideshow, as described in the method section, was to highlight and explain ethical dilemmas that may arise in staff members’ everyday work when interacting closely with residents. Immediately following the slideshow, the informants were asked whether they identified the situations depicted as things that occurred in their daily work. All ten participants acknowledged that they did. John said: ‘These ethical dilemmas are perhaps the biggest part of our work.’ In the other focus group, they also reacted to the question and Lena described the situation as follows: ‘It became so clear that this is what we are doing all the time. It’s actually everything! It’s the whole of our everyday work.’
Both groups agreed that ethical dilemmas were an overarching theme in the workplace, in fact the “biggest part” of everyday work. By articulating this, they highlighted an aspect of their work that they did not often seem to reflect on, namely how ethical dilemmas shaped their closeness to the residents.
The staff said that these ethical dilemmas became diffuse and difficult to articulate because the organization’s management did not recognize the occurrence of all the ‘minor’ everyday ethical dilemmas as one of the most challenging parts of frontline staff’s work. One of the staff, Erica, spoke about the everyday work and the occurrence of ethical dilemmas in the following way: ‘It’s kind of hard for us to explain (to the organization) that we need staff for something that is so diffuse.’
At Erica’s workplace, residents’ disabilities significantly affect their ability to engage in normative social interactions. The focus group participants stated that their employer did not pay enough attention to the challenge of supporting residents in close social relationships, where ethical dilemmas often arise. These challenges were not recognized as a core part of the frontline staff’s duties. Instead, tangible tasks like assistance with personal care were prioritized. As a result, there was a risk that the ethical dilemmas, which occupied much of the workday, became blurred and difficult to articulate. However, in the focus groups, a space was created to discuss these issues, and for the participants to put words to these ethical dilemmas.
Conversely, they also discussed various difficult and recurring situations that needed resolution, particularly when residents chose to act in a way that might become risky. The term ‘risky’ here refers to situations happening in close relationships that might result in a negative physical or psychological outcome, either for the individual resident or for others living, visiting, or working at the group home.
We will illustrate this process by quoting a discussion between Clara, who works as a frontline staff member, and Mikael, a ‘staff member in a superior position.’ The discussion is about situations where prescribed medication is used for self-harm or suicide attempts.
How to handle the situation when… how can I put it … While the resident can refuse all interventions [that have been approved by the municipality’s welfare officers], we can see that they [the residents] are not coping well. It’s an ethical dilemma of how much should we do and what can we do to support the person. Obviously, this person doesn’t want the help in the same way that others see that it would work.
Clara describes a sense of powerlessness that is constantly present. The staff feel a responsibility and empathy for the individuals they encounter every day, a feeling articulated in the Ethics of Closeness (Vetlesen 1997). However, they have no legal right to prevent a person from doing something unless they can demonstrate that there is an obvious immediate danger to life. Mikael reflected upon this: ‘We’ve been talking back and forth for a long time about whether this is an unsustainable situation, something we can’t handle within our framework.’
This ethical dilemma was present in everyday life and was often noticed, but finding a solution was challenging. Ethical dilemmas arose in the close relationship with the residents, yet not all dilemmas were openly talked about. Our reasoning highlights the importance of creating themes that can make these ethical dilemmas visible.
Ethical dilemmas emerge in closeness
Ethical dilemmas emerge as an inevitable component of the closeness that is required in the work of frontline staff at group homes. To understand the underlying concept of ‘closeness’ in this context, it is important to recognize that residents with ID are in close contact with many different individuals, something that in itself risks creating ethical dilemmas. This is a complexity that needs to be considered.
Supporting consent and preventing harm in interpersonal relationships
The first situation that emerged during the analysis centered on ethical dilemmas that proved particularly challenging for the staff to navigate. These dilemmas arise in relation to closeness when providing support for relation to personal desires, intense emotions, and interpersonal relationships. These ethical dilemmas can extend beyond the “disability services community” to encompass external parties, including relatives and friends.
The first illustration below pertains to the descriptions provided by staff members Erica and Amanda concerning a resident’s social challenges. The resident had difficulties understanding others’ perspectives and this led to challenges with respecting boundaries and showing empathy, not only at the group home but also in other contexts. The staff wanted to help the resident to handle this situation in the future. Amanda said: ‘It’s like this person can’t absorb what someone else feels and make sense of that in his own mind. …They kind of overstep, or cross the line, in several ways. It’s like they don’t understand that they’re overstepping; usually thinking that they’ve done nothing wrong.’
The participants in this focus group then discussed how their work involved supporting and providing services to those persons in a way that respected their self-determination while also ensuring the safety and rights of others. According to the staff’s descriptions, this person’s behavior toward others was often on the borderline between what was legal and what could be considered abuse and harassment. Erica described the staff’s work-mission around this person in the following way:
For us [frontline staff], some situations become very difficult tasks. We have to support their feelings and guide them in relation to the outcome of previous actions, things that might have happened several days before, and something that they maybe didn’t fully understand. A lot of dilemmas arise.
Ethical dilemmas arise in close relationships with others, and the staff need to relate to this. Closeness can occur in the present moment between individuals, or it can stem from past events that the person did not fully understand at the time. However, it can also be related to things other people do to residents that create ethical dilemmas for staff. A female resident was perceived by staff to be in an unhealthy romantic relationship with a man outside the disability community. She frequently sought their opinion on whether she should marry him and what they (the staff) thought of him. Staff grappled with an ethical dilemma: How honest should they be? Their understanding was that this man mistreated her. Although they did not know him well, they sensed he was using her sexually without a genuine intention of marriage. Emily emphasized their efforts to empower the resident to define her own boundaries. ‘This woman who lives with us talks about how much she wants to marry this man; I usually answer – You must decide what you want!’
There is a professional ethical responsibility in this situation, where the staff need to guide the women in their difficult decisions (cf. Lid 2022; Namatovu et al. 2001; Ruiz-Peréz et al. 2018). The staff had, for example, offered her help to file a police report about situations she had been subjected to, but she had always refused. At the same time, they described the situation as emotionally challenging. To maintain the trustful close relationship that the woman had with the staff, they felt that the only thing they could do was to motivate and encourage her to make her own decisions.
Supporting individual choice in a collective setting
Another example of an ethical dilemma discussed in one of the focus groups involved whose self-determination should be considered when several residents at the same group home had different opinions. Sara described a situation in which three residents wanted to visit a coffee shop with the staff, and a fourth resident became angry and upset because they were not allowed to go along. The three did not want the fourth person to accompany them due to the attention they usually attracted. While the fourth person wanted to come along, the other three residents disagreed. The focus group members debated the difficulty of refusing to take someone with them while considering the impact on the others’ enjoyment. Sara emphasized their intention never to be mean or unfair to anyone. ‘We (the frontline staff) are constantly trying to influence (the resident) to ‘be nice,’ saying ‘that was a nice thing for you to do’ or ‘that wasn’t nice’ blah, blah, blah … so that other people will like being with this person. It works for a short while but then they forget about it.’
Similar situations occurred daily with this fourth person. When they went out as a group they would need at least two staff members: one dedicated to the fourth person, while the second staff member divided their attention among the others. Ann, the ‘staff member in a superior position,’ explained: ‘I guess it’s hard for this person, due to cognitive limitations, to understand why (others do not like the way they act). At least in the moment…’
Lena, a third participant in the focus group, spontaneously responded, explaining how the staff felt emotionally when trying to resolve the situation: ‘It becomes heart-wrenching when they say, ‘But why can’t I come along?”
The staff’s task is to support all residents living at the group home in their individual self-determination, but that is not always possible. In such situations, the staff have to navigate the situation to engage the person who is left out with an alternative activity that they can do on their own and which the staff hope the person might appreciate even more.
Supporting a norm-breaking individual
Our final scenario involves situations where residents’ behavior clashes with norms, leading to questions about the frontline staff’s competence and actions from community members. In close relationships, one becomes able to see through some norms. They no longer stand out in the same way as shown in this last theme. The ethical issue primarily lies in the disrespect that the public occasionally shows toward residents with norm-breaking behaviors. This becomes an ethical dilemma in closeness when staff must try to explain the behavior of outsiders to the resident.
Ann, Lena and Eva shared a story about a resident who often wanted to visit a certain shopping mall alone. This resident had unconventional clothing choices, which often attracted unintended attention. Despite this, the staff could not restrict residents from leaving the group home. This person was an adult and did not present a danger to anyone, even though the staff understood that this person would attract unintended attention. The staff knew they had no legal right to stop the resident from leaving. One thing they could do, however, was to encourage the resident to carry a cell phone along with a note containing the phone number for the group home. Although the resident never called them, staff could reach out to this person, or the person could ask others to call on their behalf, if needed. Quite often, angry outsiders criticized the staff for allowing this disabled person to go out alone. They claimed that the staff were not doing their job, which constantly required the staff to defend themselves by explaining the LSS Act and the person’s right to self-determination.
‘Either someone from the shopping center called, or you (Ann turns to her colleagues) or you called this person.’
‘But several of those who called (from the shopping center) got angry with us. They thought we hadn’t done our job by allowing our residents to go out without proper clothes. ‘What is this person doing to themselves? They can’t take care of themselves!’ and stuff like that.’
‘I think our manager had to call some people and explain to outsiders what the legislation looks like that frontline staff are working under.’
Despite facing numerous challenges with outsiders and societal norms, staff remained confident that they were doing the best they could in this situation. They believed they adhered to the law and at the same time respected the clients’ right to self-determination. They described how they drew strength from mutual support and leadership guidance when facing external criticism.
Discussion
This article highlights a paradox between the right to self-determination and the staff’s responsibility for residents. However, staff must also ensure residents’ health and safety. Based on deontological or rule-based ethics, this sometimes creates a clash. Different rules might conflict, and consequences need consideration (cf. Blennberger 2005). These ethical considerations are integral to the staff’s professional role and need further development within the framework of ‘closeness as an ethics’ (cf. Vetlesen 1997).
Through the empirical data, we understand that everyday ethical dilemmas emerge in the close relations between staff and residents (cf. de Beuvoir 1962; Vetlesen 1997; Lis 2004; Fioretos, Hansson, and Nilsson 2013). It is in these close relations that the three scenarios emerge: (i) Supporting consent and preventing harm in interpersonal relationships, (ii) Supporting individual choice in a collective setting, and (iii) Supporting norm-breaking individuals. It is vital to develop these close relations within social work to handle close interactions in the context of group homes (cf. Neuman and Bryen 2022). Doing so shifts the focus from the individual level to social interaction and collaborative processes (Gäddman Johansson 2021).
We understand this shift as the moment when one encounters the Other and sees oneself reflected in the Other; it is in this encounter that the responsibility for the Other emerges (Vetlesen 1997). Vetlesen (1997) describes the ethical aspect of closeness in unchosen relationships with others as having ethical implications. You might say that most relationships at a group home, at least from the start, are unchosen. Being close to someone can, according to staff, mean being for them. What one ought to do when being for someone in closeness is an ethical matter. It is within the responsibility that arises in the closeness to the Other that those themes need to be understood. This also means there is a need to conceptualize them as complex, context-bound situations involving complicated decisions concerning values about what is the ‘right’ or ‘good’ way to act. These themes encompass situations where there is no clear-cut right or wrong solution, where all foreseeable outcomes may have some negative consequences for someone involved, or where there are no definitive answers for frontline staff to rely upon (cf. Blennberger 2005; Fioretos, Hansson and Nilsson 2013).
At the same time, the scenarios encountered within the themes show that [physical] closeness makes it difficult, perhaps impossible, not to relate in these situations. It is in this kind of closeness that the frontline staff grapple with these dilemmas. This closeness is a central topic within the academic field of social work, and exploring the ethical issues arising from closeness in interactions between staff and residents in group homes is an important perspective to be further explored. The staff said that ‘everyday ethical dilemmas’ emerge most clearly when residents’ behavior deviates from what is typically expected from adults or when, as perceived by staff members, residents expose themselves to risks whose consequences they are unable to foresee.
We contend that the transformation of what might be seen as undesirable behavior among residents into ethical dilemmas largely results from the staff having challenges dealing with current legislation and conventions that strongly emphasize the right of individuals to make independent decisions. The right of self-determination is a crucial element of participation in community life and is something that staff should strive toward. However, it is precisely these diverse individual choices that risk placing individuals in uncertain, dangerous situations, paradoxically hindering participation in life within a broader society that is advocating a normative, predetermined way of human existence. The self-determination accepted in society thus requires individuals who are capable of making judgments and choices. In the described situations, staff members base their approach on notions of what is considered “normal.” We must recognize that ethical dilemmas linked to closeness are an inevitable part of this work (cf. Vetlesen 1997).
Everyday life in group homes involves close relationships between staff and residents, which are essential for strengthening the residents’ autonomy despite the tensions and difficulties that inevitably arise. Staff members navigate these tensions while managing residents’ independent choices, which can challenge both the residents themselves and outsiders. This phenomenon has been identified in previous research and our study (cf. Engen, Rømer and Jørgensen 2019). Despite the difficulties, the solution is not to change social policy goals, including self-determination. These goals, which aim to enhance the autonomy and quality of life for individuals with disabilities, are concretized in the activities covered by both CRPD and Swedish social legislation. Staff members often mitigate the consequences of residents’ risky choices by discussing, motivating, explaining, expressing opinions, and sometimes disagreeing—simply taking responsibility for the residents.
Conclusion
Our findings reveal that ethical dilemmas occur frequently and significantly shape everyday life in group homes. A greater recognition of this issue is essential, and it warrants a more well-defined place in the context of the staff members’ work. Allocating resources to facilitate conversations, experience sharing, provide managerial support and more is crucial. Ethical dilemmas related to self-determination are not exclusive to group homes providing support services for adults with disabilities. Similar challenges exist in other user-centered professions working with vulnerable populations, including healthcare, social services, policing, elderly care, financial assistance provision, youth care, addiction treatment and beyond (c.f. Hay 2019; Thelin 2021). Our conclusions emphasize the need to provide increased support to frontline staff, thereby enhancing their ability to understand and respectfully address ethical dilemmas in their professional practice, which is characterized by closeness to residents.
Notes
[1] In social legislation (Swedish Government 1993a) the definition of ‘intellectual disabilities’ encompasses learning difficulties, cognitive impairments, and challenges with social interaction. Many of the residents in this empirical study had been diagnosed with autism.
Competing Interests
The authors have no competing interests to declare.
Authors Contributions
The first author is a Ph.D. student at the research school for professionals in social services; the other two authors are the student’s supervisors.