Determinants of acceptance of patients with heart failure and their informal caregivers regarding an interactive decision-making system: a qualitative study.

OBJECTIVE: Heart failure is a growing challenge to healthcare systems worldwide. Technological solutions have the potential to improve the health of patients and help to reduce costs. Acceptability is a prerequisite for the use and a successful implementation of new disruptive technologies. This qualitative study aimed to explore determinants that influence the acceptance of patients and their informal caregivers regarding a patient-oriented digital decision-making solution-a doctor-at-home system. DESIGN: We applied a semistructured design using an interview guide that was based on a theoretical framework influenced by established acceptance theories. The interviews were analysed using a content analysis. SETTING: A multicentred study in four European countries. PARTICIPANTS: We interviewed 49 patients and 33 of their informal caregivers. Most of the patients were male (76%) and aged between 60 and 69 years (43%). Informal caregivers were mostly female (85%). The majority of patients (55%) suffered from heart failure with mild symptoms. RESULTS: Four main categories emerged from the data: needs and expectations, preferences regarding the care process, perceived risk and trust. Participants expressed clear wishes and expectations regarding a doctor-at-home, especially the need for reassurance and support in the management of heart failure. They were receptive to changes to the current healthcare processes. However, trust was identified as an important basis for acceptance and use. Finally, perceived risk for decision-making errors is a crucial topic in need of attention. CONCLUSION: Patients and informal caregivers see clear benefits of digitalisation in healthcare. They perceive that an interactive decision-making system for patients could empower and enable effective self-care. Our results provide important insights for development processes of patient-centred decision-making systems by identifying facilitators and barriers for acceptance. Further research is needed, especially regarding the influence and mitigation of patients and informal caregivers' perceived risks.

Artificial intelligence supported patient self-care in chronic heart failure: a paradigm shift from reactive to predictive, preventive and personalised care.

Heart failure (HF) is one of the most complex chronic disorders with high prevalence, mainly due to the ageing population and better treatment of underlying diseases. Prevalence will continue to rise and is estimated to reach 3% of the population in Western countries by 2025. It is the most important cause of hospitalisation in subjects aged 65 years or more, resulting in high costs and major social impact. The current "one-size-fits-all" approach in the treatment of HF does not result in best outcome for all patients. These facts are an imminent threat to good quality management of patients with HF. An unorthodox approach from a new vision on care is required. We propose a novel predictive, preventive and personalised medicine approach where patients are truly leading their management, supported by an easily accessible online application that takes advantage of artificial intelligence. This strategy paper describes the needs in HF care, the needed paradigm shift and the elements that are required to achieve this shift. Through the inspiring collaboration of clinical and high-tech partners from North-West Europe combining state of the art HF care, artificial intelligence, serious gaming and patient coaching, a virtual doctor is being created. The results are expected to advance and personalise self-care, where standard care tasks are performed by the patients themselves, in principle without involvement of healthcare professionals, the latter being able to focus on complex conditions. This new vision on care will significantly reduce costs per patient while improving outcomes to enable long-term sustainability of top-level HF care.

Are there also negative effects of social support? A qualitative study of patients with inflammatory bowel disease.

OBJECTIVE: Social support is considered an important resource in coping with chronic conditions. By conducting a series of interviews with people who suffer from inflammatory bowel disease (IBD), we received the impression that social support in face-to-face or online communication could also be a source of stress and strain. The aim of our study was to better understand and describe possible negative effects of social support. DESIGN: This is a secondary analysis of narrative interviews. The interviewees were selected using a maximum-variation sampling approach. Grounded theory and the 'OSOP' (one sheet of paper) method were applied to categorise those parts of the interviews that touched on the negative effects of social support. SETTING: The open-end interview collection took place throughout Germany from September 2011 to June 2012. Most of the participants were interviewed in their homes, some in the Department of General Practice in Göttingen. PARTICIPANTS: 42 patients with IBD. RESULTS: Two interrelated categories emerged: (1) unwanted confrontation and (2) undesirable reactions. The interviewees perceived social support as negative, especially if they felt overwhelmed and/or if they had not asked for it. Consequently, some of our interview partners developed strategies to prevent coming into social contact with others or stopped talking entirely about their disease. CONCLUSION: While social support is usually conceptualised and perceived as a positive resource in chronic disease, it sometimes turns into a negative experience and may end in social isolation and deteriorate health. This process also happens in online support groups and increases anxiety when exchanging with other people on the internet. Before motivating ill people to seek contact with others, they should know about the negative effects of social support.

"And then you start to loose it because you think about Nutella": The significance of food for people with inflammatory bowel disease - a qualitative study.

BACKGROUND: Many patients with inflammatory bowel disease strongly believe that food or certain food products heavily influence the symptoms or even trigger acute flare-ups. Unfortunately, there is no generalizable information for these patients, and therefore no effective diet has been identified to date. METHODS: The narrative interviews we used for this study provide the basis for the German website www.krankheitserfahrungen.de . Maximum-variation sampling was used to include a broad range of experiences and a variety of different factors that might influence people's experiences. The sample included men and women of different age groups and social and ethnic backgrounds from across Germany. The interviews were analyzed using grounded theory. RESULTS: Four interrelated categories emerged: managing uncertainty, eating: between craving and aversion, being different and professional help as a further source of uncertainty. The most important issue for our responders was the handling of uncertainty and to find a way between desire for, and aversion against, eating. Many participants described difficulties during formal social occasions such as weddings, birthdays, or when going out to a restaurant. CONCLUSIONS: Many of the experiences the participants reported in their daily struggle with food and their illness, such as cravings for and abstaining from certain foods, were rather unusual and often stressful. Because they decided not to go out in public any longer, some of the interviewees experienced even more social isolation than they did before. Health professionals need to become more involved and not only advice about food and eating, but also help their patients find strategies for avoiding social isolation.