Ingalill Koinberg

Patients’ experience of important factors in the healthcare environment in oncology care

Background and objective The aim of this study was to describe what factors of the healthcare environment are perceived as being important to patients in oncology care. Design A qualitative design was adopted using focus group interviews. Setting and participants The sample was 11 patients with different cancer diagnoses in an oncology ward at a university hospital in west Sweden. Results Analysis of the patients’ perceptions of the environment indicated a complex entity comprising several aspects. These came together in a structure consisting of three main categories: safety, partnership with the staff, and physical space. The care environment is perceived as a complex entity, made up of several physical and psychosocial aspects, where the physical factors are subordinated by the psychosocial factors. It is clearly demonstrated that the patients’ primary desire was a psychosocial environment where they were seen as a unique person; the patients wanted opportunities for good encounters with staff, fellow patients, and family members, supported by a good physical environment; and the patients valued highly a place to withdraw and rest. Conclusions This study presents those attributes that are valued by cancer patients as crucial and important for the support of their well-being and functioning. The results show that physical aspects were subordinate to psychosocial factors, which emerged strongly as being the most important in a caring environment.

The unannounced patient in the corridor - trust, friction and person centered care.

In this study, a Swedish cancer clinic was studied where three to four unscheduled patients sought support from the hospital on a daily basis for pain and nutrition problems. The clinic was neither staffed nor had a budget to handle such return visits. In order to offer the patients a better service and decrease the workload of the staff in addition to their everyday activities, a multidisciplinary team was established to address the unscheduled return visits. The team was supposed to involve the patient, build trust, decrease the friction, and contribute to a successful rehabilitation process. Data were collected from the patients and the staff. Patients who encountered the team (intervention) and patients who encountered the regular ad hoc type of organization (control) answered a questionnaire measuring trust and friction. Nurses in the control group spent 35% of their full-time employment, and the intervention group staffed with nurses spent 30% of their full-time employment in addressing the needs of these return patients. The patients perceived that trust between them and the staff was high. In summary, it was measured as being 4.48 [standard deviation (SD) = 0.82] in the intervention group and 4.41 (SD = 0.79) in the control group using the 5-point Likert scale. The data indicate that using a multidisciplinary team is a promising way to handle the problems of unannounced visits from patients. Having a team made it cost effective for the clinic and provided a better service than the traditional ad hoc organization. Copyright

Characterisation of Cancer Support and Rehabilitation Programmes: A Swedish Multiple Case Study

Cancer support and rehabilitation are suggested to be an integral part of cancer care strategies. This study focuses on comparativeness of cancer support and rehabilitation programmes. The aim of this study was to analyse available cancer support and rehabilitation programmes in Sweden presented as complementary to cancer rehabilitation at cancer clinics. A multiple case study design was chosen in order to inquire the small number of existing supportive and rehabilitative cancer programmes. Based on the structures, processes and outcomes of the nine included programmes, three types of cancer support and rehabilitation programmes were identified: multimodal rehabilitation, comprehensive cancer support and art therapy. Cancer support and rehabilitation programmes offer a variety of activities and therapies which are highly valuable and relevant for people with cancer. The typology of cancer support and rehabilitation programmes and comparability between programmes need further inquiry.

Postoperative wound infections after a proctectomy—Patient experiences

Poor perineal wound healing and infections after proctectomy surgery cause a significant proportion of physical and psychological morbidities, such as pain, leakage, and abscesses. In the long run, some of these symptoms will lead to extended periods of hospitalization. These kinds of postoperative complications are also associated with delays in possible chemotherapy treatment. The aim of this study was to describe patient experiences of perineal wound infections following proctectomy due to rectal cancer, and the importance of the communication with and the self-care support from the nurse for these patients. Five women and five men (61–87 years, median age 71 years) were included and interviewed. A qualitative content analysis of the interviews was carried out and the following main categories emerged: “Managing postoperative complications,” “Being independent,” “Feeling safe,” and “Accepting the situation.” A perineal wound infection after a proctectomy is devastating for the individual patient. The limitations and changes to the patients’ lives turn into new daily routines, which force them to find new ways to live and to accept the situation. For many of them, the infections remained for several months and, sometimes, for years. The ability to lead an independent life is drastically reduced, but through continuity in care it is possible to create a feeling of safety. Information, communication, and self-care support are all important and valuable factors for recovery. Specialized care containing an action plan is therefore needed in clinical practice to reduce the number of perineal wound infections postoperatively and should be initiated when the patient is discharged from the ward and continue until recovery.

Exploring the Person-Centeredness of an Innovative E-Supportive System Aimed at Person-Centered Care: Prototype Evaluation of the Care Expert.

Integrated in a multiphase development project, the Care Expert is a prototype of a novel e-supportive system aiming to mediate person-centered care in the context of outpatient oncology. At this early stage of development, the current study was conducted aiming at exploring the person-centeredness concept underlying the Care Expert version 1.0 and its usability for patients receiving outpatient chemotherapy for breast cancer. Within a user-centered design, we followed a mixed-methods approach entailing subjective assessment and diagnostic evaluation of the prototype. Four women undergoing outpatient chemotherapy participated in individual sessions and rated highly the system’s usability. Their accounts led to identifying three supportive functions: continuous communication, reinforcement of self-driven agency, and cooperative agency with a sense of being looked after. We discuss the results in relation to theoretical fields that might guide further the development of the supportive system and usability recommendations. Care Expert has the potential to mediate person-centered care in outpatient oncology. Nevertheless, additional cycles of iterative development with the software team and of participatory design focusing on oncology nurses’ perspectives are required before departing to the feasibility phase in intervention research.

Person-centred web-based support - development through a Swedish multi-case study

BackgroundDeparting from the widespread use of the internet in modern society and the emerging use of web applications in healthcare this project captures persons’ needs and expectations in order to develop highly usable web recourses. The purpose of this paper is to outline a multi-case research project focused on the development and evaluation of person-centred web-based support for people with long-term illness. To support the underlying idea to move beyond the illness, we approach the development of web support from the perspective of the emergent area of person-centred care. The project aims to contribute to the ongoing development of web-based supports in health care and to the emerging field of person-centred care.Methods/DesignThe research design uses a meta-analytical approach through its focus on synthesizing experiences from four Swedish regional and national cases of design and use of web-based support in long-term illness. The cases include children (bladder dysfunction and urogenital malformation), young adults (living close to persons with mental illness), and two different cases of adults (women with breast cancer and childbearing women with type 1 diabetes). All of the cases are ongoing, though in different stages of design, implementation, and analysis. This, we argue, will lead to a synthesis of results on a meta-level not yet described.DiscussionTo allow valid comparisons between the four cases we explore and problematize them in relation to four main aspects: 1) The use of people’s experiences and needs; 2) The role of use of theories in the design of person-centred web-based supports; 3) The evaluation of the effects of health outcomes for the informants involved and 4) The development of a generic person-centred model for learning and social support for people with long-term illness and their significant others. Person-centred web-based support is a new area and few studies focus on how web-based interventions can contribute to the development of person-centred care. In summary, the main intention of the project outlined here is to contribute with both a synthesis of results on meta-level from four cases and a substantial contribution to the field person-centred care.

Challenges of evaluating a computer‐based educational programme for women diagnosed with early‐stage breast cancer: a randomised controlled trial

&NA; In a two‐group, multi‐centre, randomised controlled 9 months trial, we (1) evaluated the impact of a computer‐based educational programme compared to standard care and (2) examined whether different patterns of programme usage could be explained by demographic, medical and psychosocial factors. We involved 226 Swedish‐speaking women diagnosed with early‐stage breast cancer and scheduled for surgery. Primary outcomes were health self‐efficacy and health care participation measured by the Comprehensive Health Enhancement Supportive System instrument. Secondary outcomes were anxiety and depression levels measured by the Hospital Anxiety and Depression scale. The Functional Assessment of Cancer Therapy‐Breast and Sense of Coherence scales measured psychosocial factors for the studys secondary aim. Multi‐level modelling revealed no statistically significant impact of the computer‐based educational programme over time on the outcomes. Subsequent exploratory regression analysis revealed that older women with axillary dissection and increased physical well‐being were more likely to use the programme. Furthermore, receiving post‐operative chemotherapy and increased meaningfulness decreased the likelihood of use. Providing reliable and evidence‐based medical and rehabilitation information via a computer‐based programme might not be enough to influence multi‐dimensional outcomes in women diagnosed with breast cancer. The use of these programmes should be further explored to promote adherence to e‐Health supportive interventions.

The growing research field of patient education and learning: The significance of a Nordic network

The research field of patient learning and patient education is growing due to the high prevalence of people living with lifelong disease and illness. The aim of the present article is to argue for and describe the building of a Nordic Network for Patient Education and Learning. The article describes the Network and the activities, theoretical framework and ongoing research within the Network. If patients’ voices are to be heard within healthcare settings, patient learning and patient education are of the utmost importance. Furthermore, it is essential to share experiences from the research we have conducted and are currently carrying out with nurses in Nordic countries as well as around the world.

The Recovery Process When Participating in Cancer Support and Rehabilitation Programs in Sweden

The aim was to illuminate the meaning of participating in support and rehabilitation programs described by people diagnosed with cancer. Nineteen persons were interviewed in focus groups and face-to-face. Data were analyzed with a qualitative phenomenological hermeneutical method for researching lived experiences. Interpretation proceeded through three phases: naïve reading, structural analysis, and comprehensive understanding. Three themes were disclosed: receiving support for recovery when being most vulnerable, recapturing capabilities through supportive activities, and searching to find stability and well-being in a changed life situation. Participating in the programs was an existential transition from living in an unpredictable situation that was turned into something meaningful. Recovery did not mean the return to a state of normality; rather, it meant a continuing recovery from cancer treatments and symptoms involving recapturing capabilities and searching for a balance in a forever changed life. This study provides new insights about the experiences of participating in cancer support and rehabilitation programs.

How Patient Involvement Can Contribute to the Development of Information Materials About Malignant Melanoma for Healthy Older Men

The incidence for malignant melanoma (MM) in older men is 3 to 4 times higher than the rest of the population. Patient information about MM could be a way to reach men. The aim of the study was to design and develop a pamphlet in collaboration with older men. The study was conducted in two steps. In the first step, 73 men were interviewed; in the second step, the pamphlets were sent out to 306 men. All men were recruited in connection with an aorta screening. Men wanted concisely written information with illustrations and 85% of the men reported that they have read the pamphlet. The study demonstrates a cost-effective method to reach out with information to older men about MM.