ABSTRACT
The increasing prevalence of chronic conditions and multimorbidity poses great challenges to healthcare systems. As patients' engagement in self-managing their chronic conditions becomes increasingly important, eHealth interventions are a promising resource for the provision of adequate and timely support. However, there is inconclusive evidence about how to design eHealth services to meet the complex needs of patients. This study applied an evidence-based and theory-informed user-centered design approach in three phases to identify the needs of older adults and healthcare professionals in the collaborative management of multimorbidity (phase 1), develop an eHealth service to address these needs (phase 2), and test the feasibility and acceptance of the eHealth service in a clinical setting (phase 3). Twenty-two user needs were identified and a web-based application-ePATH (electronic Patient Activation in Treatment at Home)-with separate user interfaces for patients and healthcare professionals was developed. The feasibility study with two nurses and five patients led to a redesign and highlighted the importance of adequately addressing not only varying user needs but also the complex nature of healthcare organizations when implementing new services and processes in chronic care management.
Subject(s)
Self-Management , Telemedicine , Aged , Chronic Disease , Humans , Multimorbidity , Patient ParticipationABSTRACT
INTRODUCTION: Integrated care is believed to provide support to patients with multiple long-term and complex conditions. Transparency in information delivery is key for shared decision-making, and co-production of care. This study aimed to explore information pathways within an integrated healthcare and social care organisation and describe how information continuity was delivered for an older patient with complex care needs. METHODS: An explorative single-case study conducted in a Swedish healthcare organization where municipality and the county council have integrated their services. One focus group discussion and six individual interviews were conducted. RESULTS: Information flow to partners in care was obstructed, with compensatory double documentation, complementary information channels, and information loss. A heavy burden was on the patient and relatives to keep track of and communicate information between different caregivers. Patients were expected to be active partners in their own care, but were largely excluded from the information flow. DISCUSSION: Even integration of care organisations does not imply that integrated care is delivered at the sharp end of practice. An integrated electronic health record is needed to improve accessibility of care information from within all the organisations, facilitating handovers between professionals and levels of care, and involving patients in the information flow.
ABSTRACT
BACKGROUND: Cancer and its treatment can severely impact quality of life, giving rise to complex needs with respect to follow-up care. To support patient needs and increase efficiency of care with limited resources, the Swedish government has launched national reforms to redesign cancer care pathways. OBJECTIVE: The aim of this study was to explore how prostate cancer patients experience their journey through the healthcare system when their care is provided according to the standardized care pathway, as described in healthcare policy documents. METHODS: A qualitative, descriptive approach with individual interviews was used. A template of a standardized prostate cancer pathway, created together with healthcare professionals, was used during interviews. Fourteen interviews were conducted with prostate cancer patients all operated on at a midsized hospital in southeast Sweden between October 2015 and April 2016. The interviews were analyzed with qualitative content analysis and illustrated in a patient journey map. RESULTS: We identified an overall theme, "walking a tightrope," consisting of 4 categories: "waiting," "becoming familiar with a troublesome body," "adjusting to a different life," and "information challenges." CONCLUSIONS: The clinical implementation of the standardized care pathway is described as a straight path through care, but patients described their experiences as walking a tightrope. Lack of information, especially about cancer treatment and its adverse effects, was the most common experience. IMPLICATIONS FOR PRACTICE: Our findings indicate areas where further healthcare tools could improve patient experiences of cancer treatment. This could include offering individualized information and tools to increase patient empowerment, as well as patient/caregiver collaboration (co-care).
Subject(s)
Attitude to Health , Delivery of Health Care/organization & administration , Prostatic Neoplasms/psychology , Prostatic Neoplasms/therapy , Aged , Humans , Male , Middle Aged , Qualitative Research , SwedenABSTRACT
In previous research we have learned that patients with chronic or complex diseases often experience difficulties when transitioning from hospital care to self-care in their home. We address these difficulties by developing an eHealth tool for patients - ePATH (electronic Patient Activation in Treatment at Home) - intended to empower each patient to manage their individual situation. We have employed a user-centered design process involving both patients and healthcare personnel to specify the content and functionality of ePATH. The system is deployed as a web application with secure login for patients. In this article, we describe the main content and functionality of the system that makes it possible for a patient to manage symptoms development in relation to treatment progression Interactive functionality, e.g., reminders and social support, is included to make the ePATH a useful and informative bridge between patients, next-of-kin and different caregivers. One lesson learned is that it is necessary to incorporate motivational components in the development of an eHealth tool to successfully overcome the "intention-behavior" gap. The self-determination theory of motivation can be used to ensure that important aspects are not missed.
Subject(s)
Patient Participation , Telemedicine , Caregivers , Humans , Self Care , Social SupportABSTRACT
INTRODUCTION: Deficient hospital discharging and patients struggling to handle postdischarge self-management have been identified as potential causes of re-hospitalisation rates. Despite an increased interest in interventions aiming to reduce re-hospitalisation rates, there is yet no best evidence on how to support patients in being active participants in their self-management postdischarge. The aim of this paper is to describe the study protocol for an upcoming randomised controlled trial (RCT) of the Supporting Patient in Activation to Home (sPATH) intervention. METHODS/ANALYSIS: The described study is a randomised, controlled, analysis-blinded, two-site trial, with primary outcome re-hospitalisation within 90 days. In total, 290 participants aged 18 years or older with chronic obstructive pulmonary disease or congestive heart failure who are admitted to hospital and who are living in an own home will be eligible for inclusion into an intervention (n=145) or control group (n=145). Patients who need an interpreter to communicate in Swedish, or who have a diagnosis of dementia or cognitive impairment, will be excluded from inclusion. The sPATH intervention, developed with a theoretical base in the self-determination theory, consists of five postdischarge motivational interviewing sessions (face to face or by phone). The intervention covers the self-management areas medication management, follow-up/care plan, symptoms/signs of worsening condition and relations/contacts with healthcare providers. This RCT will add to the literature on evidence to support patient activation in postdischarge self-management. ETHICS AND DISSEMINATION: The study is approved by the Regional Research Ethics Committee (No. 2014/1498-31/2) in Stockholm, Sweden. The results of the study will be published in peer-reviewed journals and presented at international and national scientific conferences. TRIAL REGISTRATION NUMBER: NCT02823795; Pre-results.