The impact of frailty and illness perceptions on quality of life among people living with HIV in Greece: A network analysis.

OBJECTIVE: Despite the significant advances in healthcare, people living with HIV still face challenges that affect their quality of life (QoL), both in terms of their physical state as represented by frailty and of their illness perceptions (IP). The aim of this study was to unravel the associations between these constructs (QoL, frailty, IP). METHODS: This multicenter, cross-sectional study included 477 people living with HIV (93% male; median age = 43 years, IQR = 51.7) from six HIV clinics in Greece. Frailty phenotype, QoL and IP were assessed using Fried's criteria, EuroQoL (EQ-5D-5L) and Brief Illness Perception Questionnaire (BIPQ), respectively. Network analysis model was utilized. RESULTS: Among frailty criteria, exhaustion had the highest expected influence, while the strongest correlation concerns exhaustion and weak grip strength (pr = 0.14). Regarding the QoL items, usual activities displayed the highest expected influence. The correlations of pain/discomfort with mobility (pr = 0.31), and usual activities with self-care (pr = 0.34) were the strongest. For the BIPQ items, the strongest correlation was found between illness concern and emotional response (pr = 0.45), whereas the latter item was the one that displayed the highest expected influence. Three communities were formed: 1) personal control, treatment control and coherence, 2) the frailty items with mobility, self-care, usual activities, and pain/discomfort, and 3) the rest BIPQ items with anxiety/depression. Identity displayed the highest bridge strength, followed by pain/discomfort, usual activities and consequences. CONCLUSIONS: The interplay between QoL, frailty, and IP in people living with HIV requires clinical attention. Self-reported exhaustion, slow walking speed, and low physical activity affect the physical QoL dimensions, while anxiety/depression is strongly associated with illness-related concern and perceived emotional effects, leading to psychological distress. Symptom management can improve QoL, and information on the disease and treatment can enhance control over the disease. Developing interventions to address QoL, frailty, and IP is crucial.

Psychosocial interventions on the posttraumatic growth of adults with cancer: A systematic review and meta-analysis of clinical trials.

BACKGROUND: It has been increasingly recognized that some people experience post-traumatic growth (PTG) as a result of struggling with cancer. OBJECTIVE: This systematic review aims to identify psychosocial interventions that might facilitate PTG in adults with cancer. METHODS: A search was conducted in PsycINFO, PubMed, Scopus, the Cochrane Library, and ProQuest up to 16 September 2022. The PRISMA guidelines were followed; all included interventional studies had to comprise 30 or more adults with cancer, using the Posttraumatic Growth Inventory, from 1994 forward. RESULTS: A total of 2731 articles were retrieved, 1028 of those were screened and 37 unique trials were included (46 articles). A large number of studies were published since 2018 (52.4%), were randomized controlled trials (43.2%), and had group interventions (34.8%), including mainly female participants (83.8%) with a single cancer type (54.1%). Most interventions (75.7%) were moderately to highly effective in increasing PTG (d = 0.65, 95% CI 0.39-0.91) with the most effective interventions using Cognitive Behavioral Therapy (d = 1.24, 95% CI: 0.05-2.44), Mindfulness-based (d = 0.54, 95% CI = 0.14-0.94) and Education, Peer Support and Health Coaching interventions (d = 0.28, 95% CI: 0.1-0.46). Expression-based and Positive Psychology-based approaches also showed promising results. Notably, the majority of studies had a high risk of bias. CONCLUSIONS: PTG facilitation is a promising field that should be pursued as it not only allows people with cancer to overcome their trauma but also results in them going over and above their pre-cancer state, enhancing resilience, health, and well-being.

Mapping frailty in people living with HIV: A nationwide study in Greece.

OBJECTIVES: Frailty is known to affect people living with HIV prematurely, compared to the ageing seronegative population. In this cross-sectional study, we aimed to assess frailty prevalence in people living with HIV in Greece and find associations of frailty criteria with clinical data. METHODS: Demographic and clinical data were collected from 477 participants in six HIV clinics. Fried's frailty phenotype was used to assess frailty prevalence, and participants were classified as frail, pre-frail or robust. Associations of several factors with overall frailty phenotype, as well as with frailty criteria, were explored. RESULTS: The median age was 43 years old (IQR = 51.5) and 444/477 (93%) were men. Most of the participants (429/477, 93.5%) had an undetectable HIV viral load, and a CD4 cell count over 500 cells/µl (366/477, 76.7%). Frailty assessment classified 285/477 (62.1%) as robust, 155/477 (33.8%) as pre-frail and 19/477 (4.1%) as frail. Weakness in grip strength was the most prevalent criterion (128/477, 26.8%), followed by exhaustion (46/477, 9.6%). Lower CD4 cell count, history of AIDS diagnosis, CNS disorders, psychiatric diagnoses, and polypharmacy were strongly associated with frailty. CONCLUSIONS: Although the prevalence of frailty in people living with HIV in Greece is uncommon, when combined with pre-frailty over a third of people are affected, which requires attention in clinical practice. The physical and psychological aspects of frailty highlight the need for a holistic approach to prevent or counteract it. The diverse associations of frailty criteria with HIV-related and non-HIV-related factors suggest a possible variation in people's different healthcare needs.

Ethical Principles in Digital Palliative Care for Children: The MyPal Project and Experiences Made in Designing a Trustworthy Approach.

This paper explores the ethical dimension of the opportunity to offer improved electronic patient-reported outcome (ePRO) systems addressing personal needs of pediatric cancer patients, their parents and caregivers, with regard to technological advance of digital health. This opportunity has been explored in the MyPal research project, which aims to assess a patient-centered service for palliative care relying on the adaptation and extension of digital health tools and concepts available from previous projects. Development and implementation of ePROs need to take place in a safe, secure and responsible manner, preventing any possible harm and safeguarding the integrity of humans. To that end, although the final results will be published at the end of the project, this paper aims to increase awareness of the ethical ramifications we had to address in the design and testing of new technologies and to show the essentiality of protection and promotion of privacy, safety and ethical standards. We have thus reached a final design complying with the following principles: (a) respect for the autonomy of participants, especially children, (b) data protection and transparency, (c) fairness and non-discrimination, (d) individual wellbeing of participants in relation to their physical and psychological health status and e) accessibility and acceptability of digital health technologies for better user-engagement. These principles are adapted from the Ethics Guidelines for a trustworthy Artificial Intelligence (AI) which provide the framework for similar interventions to be lawful, complying with all applicable laws and regulations, ethical, ensuring compliance to ethical principles and values and robust, both from a technical and social perspective.

An exploration of the quality of life of people living with HIV in Greece: Challenges and opportunities.

OBJECTIVE: Improving the quality of life (QoL) of people living with HIV (PLWH) has been proposed as a new priority in HIV care. The objective of this cross-sectional, qualitative study was to explore the perspectives of PLWH in Greece regarding their QoL. DESIGN: Twenty-four semi-structured interviews were conducted with PLWH receiving care across six HIV clinics in Greece. The thematic analysis of the transcribed interviews resulted in four themes and eleven subthemes. RESULTS: First, fear of repercussions (e.g., stigmatization) makes PLWH reluctant to disclose their diagnosis in public settings or disclose accounting for factors like the confidant's discretion. Second, participants are challenged by HIV's unique biopsychosocial facets (e.g., uncertainty about symptoms) and fear for the future (e.g., a confidant revealing their HIV status without consent). Third, support received by specialist services is satisfactory in contrast to non-HIV specialist services, where significant improvements are needed to reduce stigmatization. Finally, the experiences of PLWH include contrasting elements of post-traumatic growth and an inability to accept their seropositivity (e.g., avoiding social interactions). CONCLUSIONS: Empowering PLWH in these QoL areas is greatly needed. Increasing the life expectancy of PLWH is only the initial step; their QoL needs to be secured as the next priority in HIV care.

Co-Designing Smartphone Notifications According to the Clinical Routine of Cancer Patients.

Although smartphone-based notifications offer a promising tool to support patient engagement and data collection via mobile health apps, attention must be given to the burden caused by frequent notifications and notification timing. This study presents a personalized mobile notification scheme, designed and developed to optimize reachability, and thus data collection from patients. Engineers, psychologists, oncologists, and patients were involved in various stages of a co-design approach and the presented implementation is currently used in the context of a clinical study.

Going above and beyond: a qualitative study on the experiences and perspectives of HIV healthcare providers in Greece.

BACKGROUND: This study concerns the experiences and perceptions of healthcare providers (HCPs) in Greece, as they respond to the changing health and psychosocial needs of people living with HIV (PLHIV) in unfavorable conditions, within a healthcare system encumbered by a decade of austerity measures. METHODS: To this end, semi-structured interviews were conducted with 20 HCPs in six HIV units throughout Greece. The data were analyzed employing reflexive thematic analysis, under a critical realist approach. RESULTS: Three main themes were generated from the analysis of the data: 1) Care Beyond Medicine, 2) Compensating System Barriers Towards Optimized Care and 3) Role Appraisal. According to HCPs' perspectives, 1) their role extends beyond medicine, as they provide care for vulnerable groups and respond to their psychosocial difficulties. 2) Struggling to overcome structural barriers, HCPs often manage to provide privileged care to PLHIV. 3) In doing so, they become excessively involved. Despite the fulfillment experienced, HCPs often feel invalidated by the hospital setting, and frustrated, when they cannot manage to respond to the pressing needs of PLHIV. CONCLUSIONS: HCPs are forced to pull together their personal resources in order to coordinate care and respond to PLHIV's psychosocial difficulties and health issues, as there is no formal model of coordination of care for PLHIV in Greece. Considering these findings, the development of case management protocols and integrated care pathways in Greece is being proposed.

AquaScouts: ePROs Implemented as a Serious Game for Children With Cancer to Support Palliative Care.

MyPal is a European initiative focusing on the use of the electronic patient reported outcome (ePRO) measures to enhance patient engagement in palliative cancer care via digital self-reporting palliative care for patients with cancer. As a part of its approach, MyPal also focuses on pediatric patients, implementing a specific digital health platform including a serious game to facilitate the reporting of the symptoms and overall status regarding their quality of life (QoL). To this end, the reduction of psychological burden related to frequent reporting, a.k.a. as "reporting fatigue" has been identified as a priority. In this study, we present the MyPal-CHILD platform, emphasizing on the serious game named AquaScouts and its key design decisions, while also emphasizing on the respective challenges. More specifically, we provide insights on the participatory design approach applied during the design of the platform and the high-level goals defined based on end-user input. In addition, the validation process applied before the use of the platform under real-world conditions is also presented. Finally, we discuss a number of challenges and the prospects of deploying eHealth interventions to support palliative care.

MyPal ADULT study protocol: a randomised clinical trial of the MyPal ePRO-based early palliative care system in adult patients with haematological malignancies.

INTRODUCTION: The systematic collection of electronic patient-reported outcome (ePRO) in the routine care of patients with chronic haematological malignancies such as chronic lymphocytic leukaemia (CLL) and myelodysplasia syndromes (MDS) can constitute a very ambitious but worthwhile challenge. MyPal is a Horizon 2020 Research & Innovation Action aiming to meet this challenge and foster palliative care for patients with CLL or MDS by leveraging ePRO systems to adapt to the personal needs of patients and caregiver(s). METHODS AND ANALYSIS: In this interventional randomised trial, 300 patients with CLL or MDS will be recruited across Europe. Patients will be randomly allocated to early palliative care using the MyPal system (n=150) versus standard care including general palliative care if needed (n=150). Patients in the experimental arm will be given access to the MyPal digital health platform which consists of purposely designed software available on smartphones and/or tablets. The platform entails different functionalities including physical and psychoemotional symptom reporting via regular questionnaire completion, spontaneous self-reporting, motivational messages, medication management and a personalised search engine for health information. Data on patients' activity (daily steps and sleep quality) will be automatically collected via wearable devices. ETHICS AND DISSEMINATION: The integration of ePROs via mobile applications has raised ethical concerns regarding inclusion criteria, information provided to participants, free and voluntary consent, and respect for their autonomy. These have been carefully addressed by a multidisciplinary team. Data processing, dissemination and exploitation of the study findings will take place in full compliance with European Union data protection law. A participatory design was adopted in the development of the digital platform involving focus groups and discussions with patients to identify needs and preferences. The protocol was approved by the ethics committees of San Raffaele (8/2020), Thessaloniki 'George Papanikolaou' Hospital (849), Karolinska Institutet (20.10.2020), University General Hospital of Heraklion (07/15.4.2020) and University of Brno (01-120220/EK). TRIAL REGISTRATION NUMBER: NCT04370457.

Randomization of Clinical Trial Participants via an Integrated Web Service.

Randomization is an inherent part of Randomized Clinical Trials (RCTs), typically requiring the split of participants in intervention and control groups. We present a web service supporting randomized patient distribution, developed in the context of the MyPal project RCT. The randomization process is based on a block permutation approach to mitigate the risk of various kind of biases. The presented service can be used via its web user interface to produce randomized lists of patients distributed in the various study groups, with a variant block size. Alternatively, the presented service can be integrated as part of wider IT systems supporting clinical trials via a REST interface following a micro-service architectural pattern.

A Twitter discourse analysis of negative feelings and stigma related to NAFLD, NASH and obesity.

BACKGROUND: People with non-alcoholic fatty liver disease (NAFLD) and non-alcoholic steatohepatitis (NASH) are stigmatized, partly since 'non-alcoholic' is in the name, but also because of obesity, which is a common condition in this group. Stigma is pervasive in social media and can contribute to poorer health outcomes. We examine how stigma and negative feelings concerning NAFLD/NASH and obesity manifest on Twitter. METHODS: Using a self-developed search terms index, we collected NAFLD/NASH tweets from May to October 2019 (Phase I). Because stigmatizing NAFLD/NASH tweets were limited, Phase II focused on obesity (November-December 2019). Via sentiment analysis, >5000 tweets were annotated as positive, neutral or negative and used to train machine learning-based Natural Language Processing software, applied to 193 747 randomly sampled tweets. All tweets collected were analysed. RESULTS: In Phase I, 16 835 tweets for NAFLD and 2376 for NASH were retrieved. Of the annotated NAFLD/NASH tweets, 97/1130 (8.6%) and 63/535 (11.8%), respectively, related to obesity and 13/1130 (1.2%) and 5/535 (0.9%), to stigma; they primarily focused on scientific discourse and unverified information. Of the 193 747 non-annotated obesity tweets (Phase II), the algorithm classified 40.0% as related to obesity, of which 85.2% were negative, 1.0% positive and 13.7% neutral. CONCLUSIONS: NAFLD/NASH tweets mostly indicated an unmet information need and showed no clear signs of stigma. However, the negative content of obesity tweets was recurrent. As obesity-related stigma is associated with reduced care engagement and lifestyle modification, the main NAFLD/NASH treatment, stigma-reducing interventions in social media should be included in the liver health agenda.

MyPal-Child study protocol: an observational prospective clinical feasibility study of the MyPal ePRO-based early palliative care digital system in paediatric oncology patients.

INTRODUCTION: Electronic patient-reported outcomes (ePROs) have tremendous potential to optimise palliative and supportive care for children with cancer, their families and healthcare providers. Particularly, these children and their families are subjected to multiple strains caused by the disease and its treatment. The MyPal digital health platform is designed to address these complex demands by offering pursuant ePRO-based functionalities via two mobile applications, one developed for children and the other for their parents. METHODS AND ANALYSIS: In this observational prospective feasibility study, 100 paediatric oncology patients aged between 6 and 17 years and at least one of their parents/legal guardians will be recruited at three clinical sites in two European countries (Germany and Czech Republic). They will use the mobile applications which are part of the novel digital health platform. During a 6-month study period, participants will complete various ePROs via the applications addressing quality of life, satisfaction with care and impact of the disease on the family at monthly intervals. Additionally, priority-based symptom reporting is integrated into a serious game for children. Outcomes that will be assessed concern the feasibility and the evaluation of the newly designed digital health platform to contribute to the evidence base of clinical ePRO use in paediatric oncology and palliative care process. ETHICS AND DISSEMINATION: The MyPal-Child study obtained ethical approval from the Ethics Committee responsible for the University of Saarland, that is, the Ärztekammer des Saarlandes, the Ethics Committee of the Medical School Hannover and the Ethics Committee of the University of Brno. Study results will be disseminated through scientific publications, presentations at international conferences, congresses and a final report to the European Commission. General publicly accessible information can be found on the project website (www.mypal-project.eu) and social media. TRIAL REGISTRATION NUMBERS: U1111-1251-0043, DRKS00021458, NCT04381221.

Fostering Palliative Care Through Digital Intervention: A Platform for Adult Patients With Hematologic Malignancies.

Patient-reported outcomes (PROs) are an emerging paradigm in clinical research and healthcare, aiming to capture the patient's self-assessed health status in order to gauge efficacy of treatment from their perspective. As these patient-generated health data provide insights into the effects of healthcare processes in real-life settings beyond the clinical setting, they can also be viewed as a resolution beyond what can be gleaned directly by the clinician. To this end, patients are identified as a key stakeholder of the healthcare decision making process, instead of passively following their doctor's guidance. As this joint decision-making process requires constant and high-quality communication between the patient and his/her healthcare providers, novel methodologies and tools have been proposed to promote richer and preemptive communication to facilitate earlier recognition of potential complications. To this end, as PROs can be used to quantify the patient impact (especially important for chronic conditions such as cancer), they can play a prominent role in providing patient-centric care. In this paper, we introduce the MyPal platform that aims to support adults suffering from hematologic malignancies, focusing on the technical design and highlighting the respective challenges. MyPal is a Horizon 2020 European project aiming to support palliative care for cancer patients via the electronic PROs (ePROs) paradigm, building upon modern eHealth technologies. To this end, MyPal project evaluate the proposed eHealth intervention via clinical studies and assess its potential impact on the provided palliative care. More specifically, MyPal platform provides specialized applications supporting the regular answering of well-defined and standardized questionnaires, spontaneous symptoms reporting, educational material provision, notifications etc. The presented platform has been validated by end-users and is currently in the phase of pilot testing in a clinical study to evaluate its feasibility and its potential impact on the quality of life of palliative care patients with hematologic malignancies.

Electronic Patient-Reported Outcome-Based Interventions for Palliative Cancer Care: A Systematic and Mapping Review.

PURPOSE: Capitalizing on the promise of patient-reported outcomes (PROs), electronic implementations of PROs (ePROs) are expected to play an important role in the development of novel digital health interventions targeting palliative cancer care. We performed a systematic and mapping review of the scientific literature on the current ePRO-based approaches used for palliative cancer care. METHODS: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement guidelines, the conducted review answered the research questions: "What are the current ePRO-based approaches for palliative cancer care; what is their contribution/value in the domain of palliative cancer care; and what are the potential gaps, challenges, and opportunities for further research?" After a screening step, the corpus of included articles indexed in PubMed or the Web of Science underwent full text review, which mapped the articles across 15 predefined axes. RESULTS: The corpus of 24 mapped studies includes 9 study protocols, 7 technical tools/solutions, 7 pilot/feasibility/acceptability studies, and 1 evaluation study. The review of the corpus revealed (1) an archetype of ePRO-enabled interventions for palliative cancer care, which most commonly use ePROs as study end point assessment instruments rather than integral intervention components; (2) the fact that the literature has not fully embraced the modern definitions that expand the scope of palliative care; (3) the striking shortage of promising ubiquitous computing devices (eg, smart activity trackers); and (4) emerging evidence about the benefits of narrowing down the target cancer population, especially when combined with modern patient-centered intervention design methodologies. CONCLUSION: Although research on exploiting ePROs for the development of digital palliative cancer care interventions is considerably active and demonstrates several successful cases, there is considerable room for improvement along the directions of the aforementioned findings.

Development of a ePRO-Based Palliative Care Intervention for Cancer Patients: A Participatory Design Approach.

This paper describes a qualitative study conducted in the context of developing a novel ePRO (electronic Patient Reported Outcome) based palliative care intervention for cancer patients. The aim of the study was to elicit end-users' needs, judgements of the MyPal system and recommendations for improvement. A participatory design was chosen as the value of this approach has been well established in eHealth systems' design as well as the development of novel healthcare services. Focus groups with Chronic Lymphocytic Leukemia (CLL) patients were conducted at the Centre for Research and Technology (CERTH) in Greece using specially designed vignettes and discussion guides. Findings revealed that patients saw MyPal offering increased, direct contact with the healthcare team, freedom of physical and psychological symptom reporting as well as valid and reliable information. However, they had concerns about the appropriate use of data collected by MyPal, the efficiency of data analysis and data security adopted for sensitive personal information. The participatory design approach used has been very useful in encouraging the genuine involvement of participants, a factor which over time can empower and promote participants' long-term engagement.

Knowledge, beliefs and communication preferences with regards to the HPV vaccine; the perspective of unvaccinated Greek adolescent girls, young women, and mothers of vaccine-eligible girls.

Background: Every year in Europe 60,000 women develop cervical cancer and 30,000 die from the disease. HPV vaccines are currently believed to constitute an important element of cervical cancer control strategy. The introduction of the HPV vaccine constitutes a shift in health policy and health promotion practice. The aim of this study was to investigate knowledge, beliefs and communication preferences of the Greek public with regards to the HPV vaccine. Methods: Six focus groups (5-8 participants) were conducted with unvaccinated teenage girls, young women and mothers of vaccine-eligible girls, recruited via schools and universities. Pre-focus group questionnaires consisted of: socio-demographic details and a knowledge questionnaire. The discussion guide was based on issues raised by relevant studies such as disease severity and personal risk perception, perceived benefits and barriers to vaccination, etc. Participants were also shown three types of stimuli namely, a leaflet, an expert interview and a documentary containing equivalent information on HPV and the HPV vaccine. Thematic analysis was used for analysis of the qualitative data. Findings: Findings revealed that participants had low to moderate knowledge levels on HPV and cervical cancer. Beliefs specific to the HPV vaccine as well as general beliefs about medicines and their use in everyday life were prevalent. The vaccination dilemma was exacerbated by the conflicting advice received by health professionals coupled with the difficulties participants experienced in evaluating relevant health information. Participants judged all stimuli according to content and format but the documentary was their preferred health information communication option. Conclusions: Findings could contribute to the understanding of health decision making with regards to preventive vaccination and help formulate recommendations for health policy adjustments.

Greek health professionals' perceptions of the HPV vaccine, state policy recommendations and their own role with regards to communication of relevant health information.

BACKGROUND: Every year in Europe 60,000 women develop cervical cancer and 30,000 die from the disease. HPV vaccines are currently believed to constitute an important element of cervical cancer control strategy. Currently in Greece, the HPV vaccine is given on demand after prescription by a healthcare professional. Health care professionals' role is key as they are in a position to discuss HPV vaccination with parents, adolescents and young women. This study is aiming to explore health care professionals' perceptions of the HPV vaccine, state policy recommendations and their own role with regards to communication of relevant health information. METHODS: This was an in-depth, qualitative study, employing a stratified, purposeful sampling. Fifteen face-to-face, semi-structured interviews were conducted with health care professionals from a variety of disciplines: pediatrics, obstetrics and gynecology, infectious diseases, pharmacy, dermatology, general practice. Thematic qualitative analysis was used to analyze participants' accounts. RESULTS: Five major themes were identified: health care professionals' perceptions towards the HPV vaccine (recognition of importance, concerns about safety, effectiveness and impact of long-term use), animosity between medical specialties (territorial disputes among professional bodies, role advocacy, role limitations), health care professionals' perceptions of the public's attitudes (effects of cultural beliefs, health professionals' attitudes, media and family), the role of the state (health policy issues, lack of guidance, unmet expectations) and their own role (provision of health information, sex education). CONCLUSIONS: Health professionals' concerns, lack of role definition and uniform information provision have led to territorial disputes among professional bodies and distrust among different medical specialties. Positive and negative judgements deriving from a multitude of sources have resulted in the confusion of the general public, as manifested by low vaccination rates. Due to the lack of clear regulation of vaccination prescription, administration and mode of delivery, factors such as lack of knowledge, cultural beliefs and personal attitudes have shaped the vaccination landscape. These factors have neither been explored nor addressed prior to the initiation of this public health effort and as such there is an evident less than efficient use of resources.

Audience reach of science on television in 10 European countries: An analysis of people-meter data.

Beginning with a differentiation of science programmes into five different editorial concepts, this article explores the audience reach of science on television in 10 European countries with a special emphasis on young audiences aged between 14 and 29 years. In relation to the share of this age group in the entire population, science programmes in all countries reach a considerably smaller proportion of younger viewers. Specific preferences for science content on television do not seem to be relevant in explaining aggregated viewing behaviours especially of young audiences. Unlike all other segments, the young science viewer segment is almost intangible as an aggregated group, as a definable segment of a mass audience that can be targeted by science programme makers.

A qualitative study of treatment burden among haemodialysis recipients.

This study aims to explore the experience of renal patients undergoing dialysis treatment focusing on beliefs about their illness, prescribed treatment and the challenge of adherence. Interpretative phenomenological analysis was used to analyse the accounts of seven haemodialysis patients. Patients have a range of beliefs about their illness and their treatment consistent with the self-regulatory model of illness, that is, identity, cause, consequences, timeline and cure. Patients sometimes consciously did not act in accordance to advice when they considered an aspect of treatment less important or less easy to adhere to. Psychological factors like beliefs might play a role in non-adherence behaviour.