The Wall of Stigma—A Qualitative Study on the Health Perceptions of Socially Marginalised Patients

ABSTRACT

Background

Socially marginalised people face several health‐related challenges as they have a high burden of co‐existing social issues and chronic diseases, and lack resources to self‐manage their care needs. Research has shown that patients experience more individualised treatment and care when supported by a social nurse during hospitalisation. However, knowledge of socially marginalised people's health perceptions is needed to understand what is important to them when receiving healthcare.

Aim

To explore the health perceptions of socially marginalised patients and how they perceive themselves in a frame of healthcare.

Methods

A qualitative study was performed with a phenomenological and hermeneutic approach. Data were collected at a hospital in Southern Denmark between January 2023 and March 2023. Purposive sampling was done to include adult patients who had contact with a social nurse during hospital admission. Participants were interviewed once at the hospital and again 7–22 days after discharge. The analysis was performed by systematic text condensation using NVivo 12 for data storage and coding.

Ethical Approval

The study is registered with the Danish Data Protection Agency (22/47509). The participants gave informed consent to participate.

Results

Sixteen patients participated in the study. Three themes were identified: (1) The circle of lifestyles, living conditions and health behaviour, (2) Feeling unwelcome in the healthcare system and (3) The personal impact of stigmatisation. The participants' perceptions of health were closely linked to their ability to participate in their everyday life. Furthermore, participants experienced low‐quality healthcare due to their social circumstances and were stigmatised by healthcare professionals.

Conclusion

This study demonstrates that socially marginalised patients' healthcare needs are complex, and they perceive their health in the context of their daily life. Furthermore, stigmatisation negatively impacted their self‐esteem and self‐efficacy required for self‐care. Understanding the health perceptions of socially marginalised patients and how they view themselves within the healthcare system is crucial for addressing their healthcare needs.

1. Background

Socially marginalised people face several health‐related challenges as they have a high burden of chronic diseases, which often exceed their resources and capability to self‐manage their care needs [1, 2, 3]. Individuals who suffer from social marginalisation often face co‐existing social disadvantages, such as homelessness, alcohol and/or drug addiction, mental illness, prostitution or other socioeconomic disadvantages related to inequality and vulnerability [2, 4, 5]. In addition to facing compromised physical and mental health, reduced well‐being and lower health‐related quality of life [6], socially marginalised individuals have markedly reduced life expectancy, which is estimated to be approximately 17 years shorter compared to the general population [7]. The number of socially marginalised people in Denmark is approximately 180,000, which is nearly 3% of the Danish population.

Danish healthcare is financed by taxation, aiming to provide equal and free access for the citizens [8]. Despite free access to healthcare, socially marginalised people are less likely to seek healthcare [9, 10]. The complexity of socially marginalised people's life circumstances often places a burden on them and challenges them to manage their comorbidities and comply with their treatment [4, 11, 12, 13]. Healthcare professionals often face challenges when caring for patients with social disadvantages, as they lack insight into their perspectives and which challenges they face [10, 14, 15]. Therefore, the treatment and care are often negatively affected by misunderstandings and conflicts between the patients and healthcare professionals [4], which often results in patients receiving insufficient treatment or patients leaving the hospital earlier than planned [6, 10]. Danish hospitals have implemented a social nursing initiative to improve the treatment and care of socially marginalised patients and support the goal of ensuring equal access to healthcare. The initiative involves social nurses, who are registered nurses with clinical experience and professional knowledge in issues related to marginalisation [13, 16, 17, 18]. Social nurses complement routine clinical care by helping to identify patients' specific somatic, social and psychological needs, advising healthcare professionals on pain and abstinence treatment, guiding patients throughout their hospital treatment and assisting in facilitating and coordinating discharge and subsequent care pathways [16, 17, 18]. Approximately 50 social nurses are currently employed across Danish hospitals. Although the initiatives vary slightly between regions, they remain grounded in the same fundamental principles [19]. While social nursing is a uniquely Danish concept, it shares similarities with the role of nurse case managers, who identify options and facilitate services that meet the complex health needs of defined patient populations, such as individuals with substance use disorders [20, 21, 22].

Research has shown that patients experience more individualised treatment and care when the social nurse participates in their hospitalisation [13, 23]. They experience that the social nurses consider personal and social aspects in the treatment and care, which is crucial when receiving healthcare [13]. Understanding the perspectives and healthcare desires of socially marginalised individuals within the context of their life circumstances is essential for improving the quality of their treatment and care. However, knowledge of their perspectives and desires for healthcare is limited. Therefore, this study aimed to explore the health perceptions of socially marginalised people and how they perceive themselves in a frame of healthcare.

2. Methods

2.1. Design

This qualitative study was performed using a phenomenological and hermeneutical approach [24]. The phenomenological approach [25] was used for in‐depth exploration of the participants' perceptions of health, and the hermeneutical approach was used to understand the perceptions through interpretations of data [26].

2.2. Setting

The study was conducted in the Region of Southern Denmark at a large hospital separated into two locations. The hospital has 1000 beds with 974,000 outpatient visits and 95,000 annual discharges (OUH, 2024).

A social nursing initiative was introduced at the hospital in 2019 to support socially marginalised patients and improve their treatment [23]. A social nurse complements the regular treatment and care of socially marginalised patients by addressing the patients' physical, mental and social needs [12, 13, 16, 17, 18]. A social nurse can be accessed by any hospital patient. The contact can be initiated by somatic healthcare providers, healthcare providers in the municipality, caregivers, the social nurse or the patients themselves [23].

2.3. Participants

Participants were purposely recruited from the hospitals in collaboration with the two social nurses employed there. Patients aged 18 years or older were included if they had contact with a social nurse during hospital admission. Patients supported by a social nurse are typically people with social disadvantages such as homelessness, substance and alcohol abuse, prostitution and/or mental illness [16, 23]. Participants were excluded if they were cognitively impaired and unable to give informed consent or were obviously intoxicated. Patients eligible for inclusion were invited to participate by the social nurse.

2.4. Data Collection

2.4.1. Reflexivity

Data were collected from January 2023 to March 2023 by the first author, henceforth called the interviewer, who works as a PhD student. The interviewer and the third author possess substantial insight into social marginalisation, drawing on both research and clinical experience as nurses. Similarly, the second and last authors have clinical experience working with marginalised patients in the emergency department. To raise awareness of the interviewer's preunderstanding and the potential impact on the research, the interviewer wrote down her preunderstanding before conducting any data collection. The preunderstanding was mainly focused on how patients have complex healthcare needs due to their social circumstances. In addition, investigator triangulation [27] and patient involvement [28] were applied to handle the preunderstanding (see section about patient involvement).

2.4.2. Interview Guide

A semi‐structured interview guide [29] was prepared for the interviews and discussed with two patient representatives, who had contact with a social nurse during hospital admission. Perspectives from the patient representatives informed the interview guide and raised awareness of the importance of flexibility in the interviews regarding the location, timing and length of the interview. Furthermore, the research group discussed considerations regarding how to appropriately approach vulnerable patients during hospital admission. The interview guide included questions about what the participants perceived as important in healthcare and their everyday life. The interview guide was pilot tested [29] in the first two interviews, which required no subsequent adjustments. The pilot interviews were included in the final data.

2.4.3. Semi‐Structured Interviews

Two interviews were conducted with the participants to explore their health perceptions and how they perceive themselves in a frame of healthcare. The first interview was conducted face‐to‐face during hospital admission, and the second interview was conducted 7–22 days after discharge either face‐to‐face or by telephone depending on the participants' preferences. The face‐to‐face design in the first interviews was chosen to build trust between the participants and the interviewer. The interviews were audio‐recorded and lasted between 15 and 60 min. The interviews were conducted individually, except for one case when a caregiver joined the interviews. Interviews were conducted until data saturation was achieved, at which point additional data sources confirmed existing themes, indicating that the essential structure of the phenomenon had been adequately captured [30].

Twenty patients were invited to participate and four declined due to lack of energy or interest. The first interview was conducted with 16 participants, and 13 participated in the second interview (Table 1). The three patients who dropped out were either out of reach, cognitively impaired or had died.

TABLE 1.

Participant characteristics of socially marginalised patients who had contact with a social nurse during hospital admission.

Participants	First interview (N = 16)	Follow‐up interview (N = 13)
Sex	N (%)	N (%)
Male	12 (75)	11 (85)
Female	4 (25)	2 (15)
Age	Age (SD)	Age (SD)
Mean	57 (14)	60 (14)
Range	19–78	19–78
Nationality	N (%)	N (%)
Denmark	14 (88)	12 (92)
USA	1 (6)	0 (0)
Finland	1 (6)	1 (8)
Employment status	N (%)	N (%)
Working	2 (13)	1 (8)
Unemployed	3 (19)	3 (23)
Retired	4 (25)	4 (31)
Early retirement	7 (44)	5 (38)
Living situation	N (%)	N (%)
Has a home	13 (81)	10 (77)
Homeless	3 (19)	3 (23)
Connection to a homeless guesthouse	N (%)	N (%)
Yes	1 (6)	0 (0)
No	15 (94)	13 (100)
Drug and/or alcohol abuse	N (%)	N (%)
Current abuse	8 (50)	6 (46)
Previous abuse	5 (31)	5 (38)
None	2 (19)	2 (15)

2.5. Analysis

2.5.1. Systematic Text Condensation

The interview was transcribed verbatim and thematically coded and categorised using NVivo version 12. Specific topics were identified from each initial interview, which provided new questions for the second interview. The first and second interviews were merged and analysed. To describe and explore the participants' perceptions, the analysis was structured by Malterud's systematic text condensation [31], consisting of four steps. This method was chosen because it allows for both in‐depth exploration and interpretation of the data, which is essential when using a phenomenological and hermeneutical approach [25, 26]. In step 1, the transcripts were read repeatedly to gain a total impression of the data. In step 2, units of meaning were identified and coded from the text. In step 3, subgroups of codes from step 2 were identified and condensed. Finally, in step 4, findings were synthesised by describing categories and themes [31]. Steps 1–3 were performed by the interviewer, while step 4 was conducted by investigator triangulation in a workshop, involving discussions to refine and reach consensus on the synthesis.

2.5.2. Patient Involvement

Two patient representatives were involved in the interpretation of data to strengthen the analysis. As recommended by Tind et al., patients from the research population were chosen for involvement to represent the voices of the research population [28]. The data synthesis was discussed individually with two patients who had contact with a social nurse to help validate and qualify the interpretation of the data [13]. The recruitment of the patient representatives was done in the same way as the participants (see section about participants).

The themes identified in the analysis were the starting point for the analytical conversation, and the quotes presented in this paper were read to the patient representatives by the interviewer. The conversation between the patient representative and the interviewer included reflections and interpretations of the results, and the interviewer noted the reflections during the conversation. This process added new perspectives to the interpretations of data and brought nuance and depth into the analysis.

2.6. Ethical Considerations

This study was performed according to the Declaration of Helsinki [32]. Information about anonymity and confidentiality was given, and oral and written consent was obtained from all participants included in the study. The study is registered at the Danish Data Protection Agency (22/47509). Approval from the National Committee on Health Research Ethics was not required according to Danish legislation.

With the participants being especially vulnerable due to being physically ill in addition to their difficult social circumstances, ethical concerns about interviewing participants were discussed in the author group. The discussion included reflections on balancing between asking the participants to use their limited capacity of energy to participate and giving them a voice to share their stories. The interviews offered flexibility to adjust the interviews according to participants' desires. Therefore, one interview was split into two meetings and the length of interviews varied depending on the individual participant's level of energy and desire to talk. Conversations with two participants gave reason to raise concern about their health and well‐being. Therefore, the interviewer reached out to the social nurse to raise awareness of their issues and make sure that they were checked up on by healthcare professionals. To uphold high moral sensitivity [33], all ethical dilemmas were discussed in the research group.

3. Results

Three themes were derived from the qualitative analysis. (1) The circle of lifestyles, living conditions and health behaviour (2) Feeling unwelcome in the healthcare system, and (3) The personal impact of stigmatisation.

3.1. The Circle of Lifestyles, Living Conditions and Health Behaviour

The participants generally described health in relation to their ability to manage and participate in everyday life activities. Many participants expressed that the consumption of drugs or alcohol was a natural part of their everyday life. Some participants reflected on life experiences and highlighted that traumatic events may have impacted their behaviours and choices of seeking comfort in intoxicants. They stated that they never learned to deal with their problems, as they have turned to intoxicants to supplant unpleasant feelings of unhappiness, which resulted in addiction. Additionally, the addiction was followed by physical and mental symptoms, which they likewise tended to displace by consuming further intoxicants.

There is nothing normal about being bullied. We have heard about people who have committed suicide because of it. (…) That is probably why I fell out to the wrong side. (…) If you ask drug abusers why they are taking drugs. It is to forget about their everyday problems. (Male, 56)

Generally, participants stated that they had a poor network consisting of just a few friends or family members. Many participants had a network consisting of people with social challenges similar to their own, such as drug or alcohol addiction or poor resources to cope with their health. The participants expressed different expectations for quitting their use of alcohol or drugs, which depended on how long the addiction had been going on and if they had tried stopping previously. While some participants expressed a desire to stop drinking alcohol or using drugs, others perceived inebriation as a necessity to socialise. Some participants stated that even though they wanted to stop drinking alcohol, they would not get their hopes up because it would put an end to their social life, as all social occasions involved drinking alcohol; and maintaining their current social life would put them at great risk of relapsing. Therefore, they perceived quitting alcohol as choosing between their physical health and their social life, which were both important for their life quality.

I am not good at being with other people unless I have a little alcohol in my blood. Then, I fell left outside. (…) I feel more alone when I'm with other people than when I am only with myself. (…) People say that you can have fun without alcohol, but I have never tried that. (Male, 62)

Some participants expressed that they had poor financial leeway and explained that it was difficult for them to make their money cover both daily living expenses and medical bills. Participants who suffered from chronic pain perceived different problems regarding their pain treatment; some expressed that their pain medication was too expensive to buy, and others did not feel adequately covered by the pain medication prescribed. They explained that they decided to find alternative solutions to cover their pain rather than the ones offered by the healthcare providers, such as buying medicines on the illegal market or finding other ways to consume the medication. Those unconventional solutions resulted in a worsening of their health status, as it added an addiction to their health problems.

It was through the pain clinic that I became a drug abuser. (…) I got methadone eight times a day. It was a lot of money. (…) Someone told me that I could be pain‐free with two pills. So, he dissolved them and injected them into my veins. (…) This was how I started. It was actually a financial benefit. (Male, 57)

Participants stated that they often neglected their healthcare needs and postponed seeking healthcare. While some participants had found alternative ways to cope with pain or discomfort, others were used to feeling discomfort under their living conditions, leading to not paying attention if their health issues worsened.

I am not very good at taking care of myself. So, now I miss a foot… (…) It is simply because of frostbite, and that I have not been taking care of it. (…) I should have been here (at the hospital) immediately, but you know… I didn't think it was necessary. (…) When you have lived on the street for 7 years, you get used to a lot of things. (Male, 57)

The postponement of seeking healthcare often led to participants presenting with more severe health conditions upon hospital admission, which might have been prevented or mitigated had they received earlier care.

3.2. Feeling Unwelcome in the Healthcare System

Getting through to the healthcare system was experienced to be difficult, and participants often perceived themselves in a position without enough power and influence to pass through the system and receive healthcare support. They stated that their voices and perspectives on healthcare were not being taken seriously and that they lacked the knowledge and resources to argue their case and persist in their viewpoints. Previous experiences of not feeling heard resulted in the participants entering the healthcare system with negative expectations of being rejected and stigmatised, leaving the hospital without completing the treatment or even refraining from seeking healthcare when becoming sick.

All those times you have tried to get through when you have been rejected because you haven't had the necessary resources or have been able to break through. (…) Then I stopped seeking contact because I was afraid of being rejected. (…) My biggest problem is not being heard. (Male, 57)

Many participants generally experienced being the lowest priority in the healthcare system and pointed out that they received treatment of a lower quality than other people, who did not face the same social issues as themselves. They shared experiences with healthcare services in which their treatment and care were not prioritised because they were categorised as alcohol or drug abusers. Participants shared examples of not being properly examined during hospital admission or not being sufficiently covered with medication, such as painkillers or abstinence treatment.

When you are a drug abuser, you are not treated the same way as Mr. and Mrs. Jensen. (…) Go and ask the people waiting for their methadone how we are treated when we go to the hospital. (…) We are thrown at the back of the line. (…) It pisses me off because I am also a person. So, I believe that I have the same rights as everyone else. (Male, 56)

Experiences of being patronised led participants to feel that they were denied equal rights to healthcare, leaving them with feelings of anger and perceptions of unfair treatment.

3.3. The Personal Impact of Stigmatisation

Some participants expressed being ashamed of their social challenges and stated that they made a great effort to appear ‘normal’ by hiding any signs of addiction or homelessness. Participants who were addicted to drugs or alcohol often felt labelled by healthcare providers. They expressed several examples when healthcare providers, either directly or indirectly, implied that their health condition was caused by their use of alcohol or drugs. They expressed being fully aware of the consequences of their unhealthy habits, and when healthcare providers pointed out their most vulnerable spot, it only made them feel hurt and even more ashamed of themselves.

The nurse said, “Alcoholics typically drink a lot of fluids,” and exactly this note made me sad. I know that I have been drinking too much. Nobody needs to tell me that. (…) It is an ugly word, just like calling somebody a prostitute. (Male, 68 years)

Participants often used categorisation when describing themselves by stating ‘people like me’, ‘we’ or ‘us’ and some participants even presented themselves as ‘addict’ even though they had quit using drugs years earlier. Furthermore, they often used negative words to describe themselves, emphasising that they labelled themselves due to their social issues or circumstances. Some participants expressed that they did not belong in a hospital designed to treat sick people, as their condition was caused by themselves.

The emergency department is not meant to treat a 67‐year‐old alcoholic like me. They are just not. (…) They are meant for people with a bad heart and something like that, not for a shithead like me. (Male, 67 years)

Participants who have previously been addicted to drugs or alcohol experienced being labelled as an addict after they had quit using. They perceived being met with distrust from healthcare providers who suspected that they were still using drugs or drinking alcohol, which was shown by a condescending attitude from the healthcare providers and poor access to medication. When the participants were treated as if they were still using, it made them feel like they were being maintained in a position that they had tried to change.

If you are once an abuser, you are always an abuser. That is how it is. (…) I feel like I'm being labeled. (…) You cannot be who you want to be because you are seen as somebody else. (…) And if they say that I am an abuser, I might as well be one. (Male, 19 years)

Being treated as someone still struggling with addiction negatively affected participants' self‐image and led some to question whether it was even worth trying to overcome their addiction if they were not believed.

4. Discussion

The findings show that patients perceive their health in the frame of their everyday life, and many patients perceive alcohol or drugs as part of how to get through the day. Patients experienced that their social statuses left them with poor access to healthcare and a lower quality of healthcare compared to other people. Furthermore, stigmatisation impacted how patients experienced themselves in a healthcare frame.

The findings illustrate that patients' perceptions of health were closely linked to their ability to participate in everyday life activities. Consumption of drugs or alcohol has become a natural way to manage everyday activities without pain and uphold a social life. Consistent with our results, Pedersen et al. revealed that drug and alcohol consumption was part of a complex way to manage daily activities [34]. Furthermore, feeling joy and well‐being was highlighted as important to feel healthy [34]. This emphasises that mental and social well‐being are crucial for patients to feel healthy and may dominate the negative health consequences of drug and alcohol consumption.

Findings from Pedersen et al. demonstrated that patients experienced healthcare professionals as focusing exclusively on their risky health behaviours, rather than considering their overall life situations [35]. Similarly, the findings in our study show that patients hesitate to seek healthcare as they experience not being taken seriously and being lowest in the hierarchy due to their social statuses and lack of resources to argue their cases. Baah et al. advocate that healthcare professionals should consider the patients' vulnerabilities in the framework of their personal needs, values and factors significant to their daily realities [1]. Hence, social categorisation appears to be a barrier to appropriate healthcare when healthcare professionals make assumptions based on the patient's lifestyle. However, considering social factors in care planning is important as a holistic approach concerns the patient's physical, psychological and social circumstances, which ground the foundation for patient‐centred care [13]. Furthermore, recognising patient vulnerability makes it possible to offer special effort and support to a defined patient group [36], such as social nurses who support socially vulnerable patients through hospital admission [12, 13]. As equal healthcare requires that patients are treated according to their needs and not in the same way [37], holistic care appears to require multi‐level interventions [38].

Research demonstrates a silo‐divided healthcare system organised around single‐condition care and specialisation [39, 40]. However, having to navigate different healthcare services places an additional burden on people with co‐existing health and social issues [41]. Simpson et al. highlight that a holistic approach to care, continuity of care and trusting relationships with care professionals are key elements in any healthcare contact [41]. Findings in our study show that patients with former or ongoing alcohol or substance use experienced that it negatively impacted their treatment and care when they were met with a stigmatising attitude from healthcare providers. McCradden et al. highlight that mutual distrust between substance users and healthcare providers and stigmatisation may be associated with lower health outcomes [38]. In addition, stigma contributes to lowered self‐esteem and self‐efficacy and provides feelings of guilt, self‐loathing, shame and despair [38]. This is supported by our findings showing that the patients stigmatised themselves, and some patients did not experience being ‘worthy’ of treatment and having the same rights to healthcare as any other person, as their healthcare issues were caused by their lifestyle. Additionally, the self‐stigma was strengthened when healthcare providers validated their negative self‐image. As such, stigma appears to harm patients in many ways, as it not only affects the present healthcare but also affects patients' self‐efficacy and self‐belief, which is important to provide self‐care.

4.1. Methodological Considerations

Limited research has explored the health perceptions of socially marginalised patients and how they perceive themselves in a frame of healthcare. The interviews provided in‐depth insights into the patients' health perceptions. While the first interview primarily focused on the hospital admission, the second interview offered a broader perspective on the patients' pathway.

The authors' preunderstanding was addressed by research triangulation and patient involvement to validate the authors' interpretations. Nevertheless, the possibility of the preunderstanding's influence on the interpretation and description of qualitative data should be mentioned [42].

Considerations about how to approach vulnerable patients were shared in the research group before conducting the interviews. Conversations with two participants revealed health concerns and required the researcher to reach out to a social nurse to raise awareness of their circumstances.

The participants were sampled by a social nurse and represented patients with different diagnoses and social circumstances. As the socially marginalised population represents people with multiple social and healthcare issues, the study population is considered representative. However, patients who were not referred to a social nurse but might have benefited from the support are not included in this study, which is considered a selection bias. Despite differences in the participants' diagnoses and social circumstances, many similar perspectives were identified, which revealed tendencies of socially marginalised patients' health perceptions and how they perceive themselves in a frame of healthcare.

5. Conclusions and Implications for Clinical Practice

This study provides insights into socially marginalised patients' health perceptions and care needs. Patients' perceptions of health were closely linked to their ability to engage in and maintain everyday activities. Despite negative health consequences, drugs and alcohol were part of many patients' leeway to uphold daily activities and general well‐being. Care needs were highly individualised, shaped by personal circumstances, preferences and lifestyles. However, participants often experienced significant barriers to receiving appropriate support from the healthcare system, and structural stigmatisation negatively impacted their self‐esteem and self‐efficacy necessary for effective self‐care. Insight into socially marginalised patients' health perceptions and their self‐perception in the frame of healthcare is crucial to understand their healthcare needs and improve initiatives for socially marginalised groups.

Author Contributions

This study was conceptualised and designed by L.K.A., A.T.L., D.N. and C.Ø. L.K.A. was responsible for data collection and conducted the data analysis with ongoing input and reflections from the co‐authors. All authors contributed to the interpretation of data. L.K.A. drafted the manuscript, and all authors participated in editing the draft and approved the final version of the manuscript.

Ethics Statement

The study is registered with the Danish Data Protection Agency (22/47509). Additional ethical considerations are described in the ethics section.

Conflicts of Interest

The authors declare no conflicts of interest.

Antonsen L. K., Lassen A. T., Nielsen D., and Østervang C., “The Wall of Stigma—A Qualitative Study on the Health Perceptions of Socially Marginalised Patients,” Scandinavian Journal of Caring Sciences 39, no. 3 (2025): e70091, 10.1111/scs.70091.

Data Availability Statement

Research data are not shared.