Understanding the complex health needs of people with problematic drug/alcohol use: a qualitative enquiry

ABSTRACT

Background

The Northeast of England faces severe health disparities, increased drug and alcohol use, and significant inequality impacts. This study aimed to extend understanding of the health needs of people associated with drug and alcohol misuse and to identify the barriers and facilitators to meeting these specific needs.

Method

A mixed method approach was used, which included a tailored behavioral insights survey (n = 38) and semi-structured interviews with eight service users recruited via a Treatment and Recovery service in the Northeast of England. Quantitative data was analyzed descriptively, and qualitative data with thematic analysis.

Findings

The study highlighted several health priority areas, with acute mental health issues being a primary difficulty for service users. The thematic analysis generated four themes illustrating the central barriers and facilitators affecting the fulfillment of health and wellbeing needs among service users: Positive environments and supportive relationships facilitated engagement, whilst stigma, internalized norms, and practicality issues were pertinent barriers.

Conclusion

The results suggest the critical need for strategic changes, including the co-location of services at user-preferred centers, reducing economic challenges. While also addressing the issue of stigma, focusing on raising professional awareness and addressing personal beliefs among service users regarding healthcare services.

KEYWORDS:

• Health needs
• substance use
• behavioural insights

Introduction

The Northeast of England has worse health outcomes, the highest rates of drug and alcohol use and higher impacts of health inequalities compared to the rest of England (Corris et al., 2020). The United Kingdom (UK) faces its highest drug-related death (DRD) rate in 25 years, with economically deprived areas like the Northeast having over three times the DRD rate compared to London (ONS, 2022). Strict UK austerity policies have been attributed to rising overdose incidents (fatal and non-fatal) and alcohol misuse (Friebel et al., 2022; UK Health Security Agency, 2022), exacerbated by poverty, homelessness, unemployment, and significant cuts in drug and alcohol treatment funding (ACMD, 2017; Lewer et al., 2022; Public Health England, 2018). Hartlepool, the location of this study, has the third highest rate of deaths due to drug poisoning in the UK and the 18^th highest alcohol related liver disease mortality rate in England (ONS, 2022). More than half of the town (52%) is within the most deprived quintile in England with the substance misuse caseload located within the areas of highest deprivation.

Increasing drug/alcohol use among people with multiple health issues, especially in disadvantaged areas, adds additional complexities to this public health issue (Friebel & Maynou, 2022). Mortality within this group is often associated with non-communicable diseases such as Chronic Obstructive Pulmonary Disease (COPD) (Lewer et al., 2019) and Soft Skin Tissue Infections (SSTIs) with severe bacterial infections also posing a serious risk to health for people who use drugs, with marginalized groups more likely to be at risk (Harris, 2020; Lewer et al., 2020). Barriers to accessing healthcare, including homelessness, hostile health environments, discrimination, and imprisonment, can exacerbate conditions and hinder help-seeking and receiving care (Harris, 2020; McNeil et al., 2016). Treatment resistance and discharge against medical advice (DAMA) are also common, with medical care-seeking becoming a last resort for drug users, resulting in admission for critical conditions (Harris, 2020), leading to longer hospital stays and premature mortality due to delayed care (McNeil et al., 2014; Yong et al., 2013).

Individual, community, and structural issues impact healthcare access for those with drug and alcohol issues. Individual level barriers and facilitators faced by this demographic accessing healthcare services often focus on feelings of shame (Harris et al., 2014; Poll et al., 2017), treatment readiness (Day et al., 2015; Roberts et al., 2020) and the lack of priority placed on healthcare (Poll et al., 2017). Community level concerns commonly focus on peer influence (Greaves et al., 2009; Notley et al., 2015), the impact of individualized care (Alves et al., 2021) and therapeutic relationships (Carlisle et al., 2023). Lastly, structural level issues include limited funding for services (Roberts et al., 2020) and fragmented care pathways (Gilburt et al., 2015; Osborne et al., 2022). It has also been found that deeper structural barriers including stigma, addiction, and welfare policy can drive the lack of engagement with healthcare services (Poll et al., 2017).

Hartlepool has seen a rapid increase in deaths from drug misuse since 2012 and has higher hospital admission rates linked to drug misuse than both the Northeast and England (Hartlepool Borough Council, 2023). Given that drug and alcohol use can lead to numerous physical and psychological conditions, it is vital that safe and effective treatment is available for those who need it. Comprehension of the health and wellbeing requirements, current services available, and the hindrances and factors that aid in addressing the needs of individuals involved in detrimental drug and alcohol use is strategically crucial. This understanding serves as a foundation for developing and testing innovative prevention and harm reduction strategies in the UK. This study aimed to gain a deeper understanding of the intricate health needs of individuals with problematic drug and alcohol misuse, as well as to identify the barriers and facilitators to meeting these specific needs.

Method

Design

This study employed a mixed-method approach to understand the health and wellbeing needs and barriers and facilitators to meeting the needs of individuals involved in harmful drug/alcohol use. This approach was deemed appropriate to increase the understanding of this complex area (Alexander et al., 2008). The quantitative element involved a tailored behavioral insights survey developed in collaboration with a steering group utilizing a Likert scale to explore perceived physical and mental health alongside open-ended questions addressing specific health and wellbeing concerns. This was followed by a qualitative component, which consisted of participant-led semi-structured interviews focused on individual experiences, contextualizing and exploring the meaning behind those experiences (Low, 2013). This approach enabled participants to have greater autonomy and responsibility in shaping the direction of the interview.

Participants

Thirty-eight participants completed the survey (26 males, 12 females) and eight participants (7 males, 1 female) engaged in interviews. All participants were recruited on a voluntary basis via a Treatment and Recovery service in Northeast England. Individuals were recruited if they met the inclusion criteria of being over 18 years of age, accessed services for people who use drugs and alcohol, and were able to provide informed consent. Recognizing the vulnerability of substance users makes participant recruitment more difficult (Ellard-Gray et al., 2015) but recruitment and data collection continued until sufficient data had been collected to draw necessary conclusions. Participants could opt to take part in one or both components of the study. Ages ranged between 19 and 58 years, and participants had prolonged problematic drug (heroin, cocaine, cannabis, ecstasy, amphetamines) or alcohol use.

Data collection procedures

Potential participants were identified by key workers at the Treatment and Recovery service and were provided with a study information sheet. The researchers who provided support during survey completion and who conducted the interviews were independent of the Treatment and Recovery service. Surveys were completed anonymously with participants confirming consent by ticking a consent statement. Written consent was obtained at the beginning of interviews. The research approach was open and individualistic; whilst a semi-structured interview schedule was used, participants could move through topics and questions in any order, providing as much detail as they wished. Interviews lasted approximately 20 minutes and were conducted in a private room at the Treatment and Recovery service to facilitate participation. The interviews were audio-recorded and transcribed verbatim. After completion, participants received a debrief with additional support resources. Survey data was anonymous, while interviewees were given pseudonyms for anonymity protection. The study received ethical approval via Newcastle University Faculty of Medical Sciences Research Ethics Committee [reference: 2574/32807].

Data analysis

Survey responses were combined to provide overall descriptives and a coding reliability thematic analysis (Braun & Clarke, 2022) was applied to the qualitative data. This involved a process of familiarization with the data, producing codes, generating the initial themes, reviewing the themes, defining the themes, and writing up. The familiarization process began with repeated readings of the raw data, accompanied by initial notetaking on the interview transcripts. Inductive coding was employed to identify pertinent passages, assigning code labels and create initial themes. The systematic approach encouraged individuality, minimized repetition, and facilitated the emergence of new insights from each transcript. Coders operated independently to prevent bias, and the most recurring themes were identified. To ensure credibility, coders’ decisions were blinded from each other. The research team met regularly to review codes and collaborate on the production, reviewing, and naming of themes. Initial themes were presented and discussed at a steering group following which themes were reviewed and refined. Throughout the research process the researchers engaged in reflective practice, recognizing and questioning preconceptions, and noting the potential influence of the researchers’ characteristics as potentially influencing data collection and analysis.

Results

Service users highlighted various impacts of substance use on their physical and mental health. The majority described their physical (21) and mental health (23) as “poor” to “fair,” with 17 and 11 participants, respectively, reporting it as “good” to “very good.” Three participants rated their mental health as “excellent,” but none rated their physical health in this way.

Beyond addiction, prevalent health concerns in both the survey and interviews included acute mental health issues, such as suicidal ideation, self-harm, psychosis, paranoia, and mood disorders. Additionally, participants reported experiencing breathing and lung problems, weight loss, dental issues, ulcers, sleep disturbances, and back pain. Twenty-one participants reported that they could improve their physical health, whilst sixteen did not believe this was possible. Twenty participants noted that they felt they could improve their mental health, but fifteen did not perceive this to be possible. Thirteen participants reported actively avoiding seeking healthcare. Such trends identified from the survey were subsequently discussed within the qualitative interviews to gather more in depth insight into the barriers and facilitators to help-seeking and improving physical and mental health.

Four themes were developed from thematic analysis of the qualitative data that reflected the core barriers and facilitators described by service users as impacting the meeting of health and wellbeing needs: stigma, internalized norms and life history; positive environments and supportive relationships; travel and transport: mode, timing and location of services, and appointments and open access facilitated care.

Stigma, internalised norms and life history

Service users described themselves as marginalized individuals facing societal stigma and disenfranchisement, burdened by the anticipation of judgment. They described encountering stigma from various healthcare professions and the public, significantly impacting their willingness to engage and attend healthcare appointments. This pervasive stigma had a detrimental effect, deterring individuals from seeking help as they felt compelled to keep their issues to themselves. This reluctance to seek help was deeply ingrained and was a significant barrier to accessing necessary support and care, perpetuating the cycle of withholding concerns due to fear of judgment or societal repercussions.

Yeah just the stigma about it … I wouldn’t want to be in that queue because you’re stigmatised.

I used to be a regular for the overdoses and then half of them, half of the doctors and half of the nurses are like you’re just wasting my time, you keep doing it.

I just don’t like talking to strangers about me lifestyle. I find it hard. I just keep everything in.

Service users held the belief that they should exclusively seek health support in dire, emergency situations, actively choosing to avoid seeking assistance unless their condition became critical. This mind-set revealed their reluctance to access help or support until their circumstances reached a severe or urgent level of need.

I try to avoid them if I can. Its only in an emergency that I’d go to use them.

At the core of this behavior was service users’ willingness to openly discuss their personal histories and experiences, coupled with a sense of hopelessness when sharing these with healthcare professionals. The overwhelming feeling of hopelessness, stemming from the belief that they couldn’t alter their history, acted as a deterrent in seeking help – a sentiment often articulated as “There’s nothing I can do.” Moreover, past negative encounters with healthcare professionals, including in-patient services, stood as formidable barriers, dissuading them from seeking further assistance. These adverse experiences significantly hindered their willingness to engage with healthcare services in the future.

Positive environments and supportive relationships

This theme illustrate the vital role played by professionals across healthcare and third-sector services in fostering recovery and promoting engagement in medical appointments. Creating an environment of acceptance, marked by personalized and compassionate approaches, emerged as a crucial facilitator for their engagement. Notably, the influence of caseworkers, general practitioners (GPs), and staff within substance support services was emphasized. Caseworkers proved instrumental in facilitating access to broader healthcare services when required, partially mitigating the barriers stemming from stigma and aiding navigation through what was reported as a complex healthcare system.

I can talk to her [case worker], do you know, tell her things.

Yeah because [case worker] trying to get me referred to the doctors and then they’re trying to get me referred to a hospital.

Everyone’s friendly, they seem to know everything, and they know us personally.

I think they actually care enough here.

The essential attributes highlighted included the demeanor of staff, characterized by their friendliness, depth of knowledge, genuine care, and a welcoming attitude. Service users highly appreciated staff members who invested time in interactions and offered a more personalized service tailored to their needs. This approach, coupled with genuine interactions, was valued by the service users, contributing significantly to their positive experiences and engagement with the services provided.

Travel and transport: mode, timing and location of services

Service users described physical limitations due to pain and disability which had an impact on access to a range of healthcare services.

And with the state of my feet I have to walk. There’s no way I can walk all the way down there.

Moreover, challenges associated with public transport, such as the considerable distance to healthcare facilities and the absence of transport options during out-of-hours or late-night periods, were reported as deterrents to seeking help. Financial constraints, including owing money to illicit drug suppliers, significantly impeded access to substance use treatment and recovery centers for some service users. Financial limitations emerged as a significant hurdle, constraining the ability of service users to access the necessary support.

Well, its half past 1 in the morning, I can’t get back to town till the shuttle bus runs at half past nine. So where am I supposed to stay, where am I supposed to sleep. You’ve brought me here.

Financial constraints also presented within the context of dentistry with the cost of private dental treatment not deemed to be feasible when a service user was not financially stable whilst in drug/alcohol rehabilitation.

I’ve been phoning dentists all over I cannot get a dentist, you’ve got to go private [for dental treatment] and I haven’t got the money when I’m in [drug/alcohol] rehab to go private.

Physical barriers to accessing professional services represented a significant concern, hindering internal motivation and commitment. These barriers can impede engagement and serve as a convenient justification for individuals to align with inner thoughts and societal stigma, further complicating their willingness to seek help or engage with professional services.

Appointments and open access facilitated care

This theme emphasizes the challenges service users encountered in accessing primary care providers and broader health services, with difficulties securing appointments being perceived as another barrier to their engagement. This led to increased frustration and feelings of helplessness among service users.

Trying to get an appointment is crazy. I mean they tell you to phone up at half past eight, you phone them until half past ten and they’re telling you to phone later. Phone later and there’s no appointments.

I’ve been trying to do it myself but going through all the books and phoning everyone I’m just getting nowhere it’s been like two months now and I may be phoning 3, 4 places a week … they’re putting me on the list and that I know I phoned you last week but is anyone not come in or whatever.

Some service users highlighted a desire for expanded healthcare access through telephone and Short Messaging Services (SMS). Conversely, the shift toward more digitalized healthcare and the need for digital literacy were seen as hurdles for others. This underscores how different preferences and challenges in accessing healthcare can influence individuals’ help-seeking behaviors and attitudes toward digital healthcare solutions.

That was the best way where you just used to go, instead of using all this technology, laptops, and stuff.

When the initial access to healthcare proved challenging, it not only acted as a barrier but also intensified internalized norms. This situation led individuals to seek help only in emergencies. This highlights the critical impact of initial healthcare access difficulties on shaping help-seeking behaviors, potentially limiting individuals to seeking assistance solely during urgent or crisis situations.

Open access, where a service user can visit without a pre-scheduled appointment and see a relevant practitioner on the same day, was deemed highly beneficial and a potential strategy to overcome the challenge of the current appointments system. As implemented by the Treatment and Recovery service, the open access system was preferred over the traditional scheduled appointment system. This facilitator holds particular significance considering barriers like internalized norms and concerns regarding wait times. The expediency with which service users are attended to since introducing this system was highlighted as a key advantage.

You can come in at any time for a restart. But before you used to have to wait 3 or 4 days, it was a nightmare.

And when I’ve been up here I get straight in, I get straight seen so this place has been brilliant.

Having a wider array of services available in one location or co-located facility was perceived as beneficial in addressing health concerns promptly, potentially preventing situations from deteriorating to the extent of needing urgent medical intervention or hospitalization.

Discussion

This study aimed to gain an insight into the health needs of individuals with problematic drug and alcohol misuse, and to identify the barriers and facilitators to meeting these needs. The most common co-morbidities alongside addiction reported by participants were mental health, respiratory (including COPD, asthma), pain, skin integrity, and housing, with several physical and mental symptoms being exacerbated by substance or alcohol use. Individuals with a prolonged history of drug or alcohol use frequently exhibit multiple long-term health conditions, many of which impact mobility, resulting in additional obstacles to accessing services. Hartlepool has the highest admission rate of hospital admissions where drug-related mental health and/or behavioral disorders are a factor (HES, NHS Digital, 2022). To ensure equitable and effective healthcare support, the co-location of services, for example via health and wellbeing nurses based within Treatment and Recovery centers (with which services users are engaging), could support the monitoring of lung conditions, the promotion of skin integrity and offer greater access to mental health provision reducing emergency admissions.

Factors that promoted service user engagement were conceptualized by the pivotal roles of a positive environment and supportive professional relationships offered by the Treatment and Recovery service (Anderson et al., 2022), alongside accessibility and support to access wider healthcare services. Engaging with a service that cultivates a positive, personal, and supportive environment, alongside the experience of establishing therapeutic relationships with professionals, provided individuals with a sense of acceptance and safety. Equally important was the accessibility and flexibility of services offered, which were perceived as a form of responsive care (Edvardsson, 2015) and were complemented by guided support to access a wider range of services.

Service users in our study revealed profound feelings of shame and embarrassment associated with their lifestyle choices, compounded by internalized norms and perceived prejudice from healthcare professionals, which constituted a significant barrier to engagement. External stigma is defined as a social phenomenon that occurs when there is evidence of labeling, stereotyping, separation or “othering” and a power imbalance (Andersen et al., 2022), and it is not uncommon for stigma to be displayed by health care professionals when working with substance users (Armstrong et al., 2021; Carlisle et al., 2023; Roberts et al., 2020). Stigma inevitably plays a critical role in the wellbeing of stigmatized groups (Ahern et al., 2007), particularly affecting individuals with alcohol and substance use disorders (Can & Tanrıverdi, 2015). The embarrassment associated with internalized stigma (Woo, 2017) can, as observed in our study, affect service users’ help-seeking behaviors and interactions with professionals, with the cumulative impact of these factors creating a sense of vulnerability, reducing internal motivation to seek professional help, potentially as a self-preservation strategy. Additional obstacles identified by our research related to appointment scheduling, extended waiting periods, reliance on technology, and physical accessibility challenges which further reinforced internalized norms, increased feelings of rejection, and dissuaded individuals from seeking help except in emergencies. There is some promising evidence for the effectiveness of self-stigma interventions using psychological therapy, particularly Acceptance and Commitment Therapy though further research is needed (Sibley et al., 2024). Enhancing healthcare professionals’ awareness, encouraging the use of non-stigmatizing language amongst professionals, providing opportunities for social inclusion and dialogue, and exploring the potential efficacy of social marketing campaigns are strategies worthy of consideration.

Service users in our study explained that the increasing reliance on technology to access healthcare and make appointments has created an additional barrier to meeting their health needs. People in this demographic have been noted as having limited access to electronic devices and of those who have access, it has been reported that there is a level of suspicion relating to these technologies (Matheson et al., 2022) with digital exclusion as a barrier for healthcare being more prominent in areas of socioeconomic deprivation (Mee et al., 2023). Accordingly, we suggest that interventions to support service users with the increasing digitalization around accessing services include improving technological awareness and digital literacy drawing upon community assets to support training where feasible. Poverty proofing strategies may also be beneficial, particularly given the health inequalities observed in the Northeast of England and financial costs associated with technology. Reducing digital exclusion may be enabled via the donation of devices and provision of data e.g., through data donation initiatives.

Strengths and limitations

This behavioral insights study engaged a seldom reached group (Ellard-Gray et al., 2015) and identified key priority areas for service users regarding health and wellbeing needs. However, the participant group were largely homogenous in certain demographics, as all participants were recruited through the Treatment and Recovery service, signifying their active pursuit of recovery assistance. Therefore, substance users not engaged in active recovery or not under such professional care were not represented, a notable concern given a high proportion of individuals with addiction issues are not in treatment (Saitz et al., 2008) and may have varying needs (Manning et al., 2019). While typical for hard-to-reach populations, this study’s recruitment solely through the Treatment and Recovery service aligns with time-location sampling methods (Rockliffe et al., 2018).

A core strength of this study lies in its mixed methods approach, allowing for the integration of data to comprehensively understand the health needs of individuals with substance misuse issues (Almalki, 2016; Creswell & Clark, 2007). The depth of data obtained through semi-structured interviews is another strength, enabling a profound understanding of participants’ experiences within the social context of managing their health needs as drug or alcohol users (Low, 2013), especially from a sample that can be inherently reluctant to share their experiences with a condition (Newcomer et al., 2015). Qualitative research often faces criticism regarding rigor (Mackieson et al., 2018); therefore, credibility and confirmability were established using a reflective diary (Anney, 2014), while transferability was ensured through in-depth discussions based on semi-structured interviews (Connelly, 2016). Dependability was strengthened by providing a highly detailed account of the study’s methods (Anney, 2014; Connelly, 2016).

Conclusion

Collectively the insights from the service users highlighted key priorities crucial for strategic planning at a local and national level. Firstly, the co-location of services at user-preferred centers that do not pose economic challenges could improve healthcare accessibility, encouraging engagement. This may, in turn, enhance communication between service providers, enabling a cohesive and integrated approach to care. Secondly, addressing the issue of stigma requires a strategic focus on raising professional awareness and addressing service user’s personal beliefs regarding professional services. This appears essential to support service user’s intrinsic motivation to access and engage with services effectively.

Author contributions

Conceptualization and design: KS, DJ, CR, MP, AR; Acquisition, analysis and interpretation of the data: KS, DJ, EJ, BW, GP; Writing – Original Draft Preparation: KS, DJ, BW; Writing – Review & Editing: KS, DJ, CR, MP, AR; Final approval of the version to be published: KS, DJ, EJ, BW, GP, CR, MP, AR. All authors take full responsibility for all aspects of the work.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The data are not publicly available as they contain information that could compromise the privacy of research participants.

Additional information

Funding

Newcastle University received funding from Hartlepool Borough Council to conduct these behavioural insights research.