In general, patient participation is regarded as being informed and partaking in decision making regarding one’s care and treatment. This interpretation is common in legislation throughout the Western world and corresponding documents guiding health care professionals, as well as in scientific studies. Even though this understanding of the word participation can be traced to a growing emphasis on individuals’ autonomy in society and to certain dictionary defi nitions, there are other ways of understanding participation from a semantic point of view, and no trace of patients’ descriptions of what it is to participate can be found in these definitions. Hence, the aim of this dissertation was to understand patients’ experience of the phenomenon of patient participation. An additional aim was to understand patients’ experience of non-participation and to describe the conditions for patient participation and non-participation, in order to understand the prerequisites for patient participation. The dissertation comprises four papers. The philosophical ideas of Ricoeur provided a basis for the studies: how communication can present ways to understand and explain experiences of phenomena through phenomenological hermeneutics. The first and second studies involved a group of patients living with chronic heart failure. For the fi rst study, 10 patients were interviewed, with a narrative approach, about their experience of participation and non-participation, as defi ned by the participants. For the second study, 11 visits by three patients at a nurse-led outpatient clinic were observed, and consecutive interviews were performed with the patients and the nurses, investigating what they experience as patient participation and non-participation. A triangulation of data was performed to analyse the occurrence of the phenomena in the observed visits. For paper 3 and 4, a questionnaire was developed and distributed among a diverse group of people who had recent experience of being patients. The questionnaire comprised respondent’s description of what patient participation is, using items based on findings in Study 1, along with open-ended questions for additional aspects and general issues regarding situations in which the respondent had experienced patient participation and/or non-participation. The findings show additional aspects to patient participation: patient participation is being provided with information and knowledge in order for one to comprehend one’s body, disease, and treatment and to be able to take self-care actions based on the context and one’s values. Participation was also found to include providing the information and knowledge one has about the experience of illness and symptoms and of one’s situation. Participation occurs when being listened to and being recognised as an individual and a partner in the health care team. Non-participation, on the other hand, occurs when one is regarded as a symptom, a problem to be solved. To avoid non-participation, the information provided needs to be based on the individual’s need and with recognition of the patient’s knowledge and context. In conclusion, patient participation needs to be reconsidered in health care regulations and in clinical settings: patients’ defi nitions of participation, found to be close to the dictionaries’ description of sharing, should be recognised and opportunities provided for sharing knowledge and experience in two-way-communication.

Syfte: Studiens syfte var att undersöka vad patienterna har för upplevelser av sjukvården, samt vilka förbättringar de föreslår. Metod: Undersökningsgruppen bestod av 50 patienter som svarat på de öppna frågorna i en nationell patientenkät. Svaren analyserades med kvalitativ innehållsanalys. Resultat: Analysen av materialet resulterade i fem kategorier och elva underkategorier. De fem kategorierna bestod av: bemötande, sjukhusmaten, vårdmiljön under sjukhusvistelsen, in- och utskrivning samt väntetider under vårdtiden och samarbete mellan professioner. Patienter som vårdades inom slutenvården ansåg att det bemötande de erhöll i huvudsak varit gott, men att det förekom vissa negativa attityder som bör förändras till det bättre. Förbättringar av måltider och sjukhusmiljön önskades, dessa områden upplevdes otillfredsställande. Vidare föreslogs förbättringar rörande information och kommunikation. Dessa två faktorer spelade, enligt patienter, roll för hur trygga de kände sig inom vården. Väntetiderna upplevdes vara alltför långa och patienterna önskade att dessa ska bli kortare. Slutsats: Patienterna i denna studie hade både positiva och negativa upplevelser av slutenvården, samt föreslog förbättringar på ett antal områden. Detta resultat, samt framtida patientundersökningar, kan vara ett underlag för sjuksköterskors kvalitetsförbättringsarbete i den kliniska verksamheten då det identifierar områden i behov av förbättring. / Aim: The aim of this study was to examine patients’ experiences of health care, and which improvements they propose. Method: The study group consisted of 50 patients who answered the open-ended questions in a national patient satisfaction questionnaire. The patients’ answers were analyzed with qualitative content analysis. Results: The analysis resulted in five categories and eleven subcategories. The five categories were:  social interaction with staff, hospital food, hospital environment during the stay, admission, discharge and delays and collaboration with other professions. Patients who received hospital care generally considered themselves treated well by staff, but some experienced negative attitudes from staff which leaves room for improvement. Other areas considered dissatisfying were the hospital food and the hospital environment. Furthermore, suggestions were made concerning the improvement of information and communication. These factors, according to patients, affect whether they feels safe or not when receiving health care. Patients also expressed that waiting times and delays were too long, and ought to be shortened. Conclusion: Patients in this study had both positive and negative experiences of their hospital stay. They suggest improvements in several areas. These results, together with future patient satisfaction surveys, can develop a basis for nurses to improve the quality of care in clinical practice since they identify areas in need of improvement.

In Australia, colorectal cancer (CRC) is the most common registrable cancer affecting both men and women, and the third most common cause of cancer deaths. Clinical data from randomised, controlled trials indicate that population-based screening utilising the faecal occult blood test (FOBT) can reduce mortality from this disease. However, high adherence rates with repeated testing are required to secure these outcomes. This study examines repeat adherence with FOBT screening in a rural community two years after a first screening round was conducted. Patients, aged 50 to 74 years, registered with four local general practices were mailed a FOBT kit with a letter of invitation from their general practitioner. Following the intervention, 119 telephone interviews were conducted with adherers and non-adherers to examine knowledge and attitudes related to screening. Compliance with screening was recorded and compared with first round-data. Participation in the screening program was modest. Of the 3,406 participants eligible for both screening rounds, 34.1% and 34.7% participated in rounds 1 and 2, respectively. A majority of participants (56.8%) did not adhere to either screening, a quarter (25.7%) participated in both rounds, and 17.5% participated in one of the two rounds. First-round adherence was the strongest predictor of second-round adherence (OR=16.29; 95% CI: 13.58, 19.53) with 75.2% of first-round adherers completing a FOBT in round 2. Females were also more likely to adhere in both rounds, although the difference between females and males decreased across rounds. Knowledge and attitudes differed between adherers and non-adherers and are discussed within the context of the major findings. Results from this trial indicate that achieving high levels of compliance in a national screening program will be challenging. Strategies to increase repeat adherence are suggested.

Diss. Linköping : Univ., 2006.

Diss. (sammanfattning) Umeå : Univ., 2007. / Härtill 5 uppsatser.

Diss. (sammanfattning) Örebro : Örebro universitet, 2006. / Härtill 4 uppsatser.

Thesis (Ph. D.)--University of Alabama at Birmingham, School of Education, 1998. / eContent provider-neutral record in process. Description based on print version record. Includes bibliographical references (leaves 103-109).

Thesis (M.S.)--University of Michigan, 1990.

Thesis (Ph. D.)--University of Alabama at Birmingham, School of Education, 1998. / eContent provider-neutral record in process. Description based on print version record. Includes bibliographical references (leaves 103-109).

Thesis (Ph.D.)--Victoria University of Wellington, 2009. / Includes bibliographical references.