Patientens upplevelser efter en gastric byass operation : en kvalitativ intervjustudie

Syftet med studien var att beskriva patientens upplevelser efter en gastric bypass operation. En empirisk studie med kvalitativ ansats genomfördes, där intervjuer skedde med sex personer som genomfört en gastric bypass operation. Data analyserades genom kvalitativ innehållsanalys. Under intervjuerna framkom att informanterna upplevde att operationen inte hade någon negativ inverkan på deras vardagliga liv. De upplevde en ökad livskvalitet och förbättrad hälsa som lett till ett mer fysiskt aktivt liv. Viktnedgången tillsammans med omgivningens positiva reaktioner på den nya kroppen hade stärkt deras självförtroende. Den största förändringen informanterna upplevde i det vardagliga livet var deras förändrade matvanor. De beskrev att maten var i fokus och att de planerade sin vardag efter måltiderna. De följder som framkom upplevdes inte som något stort problem, utan viktminskningen och de positiva hälsoupplevelserna dominerade. Informanterna kände sig välinformerade och hade realistiska förväntningar på operationen, samt var förberedda på de konsekvenser som kunde uppstå. Studien visar att den specialiserade vården på överviktskliniker kan bidra till att underlätta tiden efter operationen för patienten. Det framkom att informanterna upplevde en kunskapsbrist om gastric bypass operationer bland sjukvårdspersonal, inom primärvård och slutenvård. För att patienten ska känna trygghet och förtroende är det därför viktigt att öka kunskapen om överviktsoperationer bland hälso- och sjukvårdspersonal.

What is important for you? A qualitative interview study of living with diabetes and experiences of diabetes care to establish a basis for a tailored Patient-Reported Outcome Measure for the Swedish National Diabetes Register

OBJECTIVES: There is a growing emphasis on the perspective of individuals living with diabetes and the need for a more person-centred diabetes care. At present, the Swedish National Diabetes Register (NDR) lacks patient-reported outcome measures (PROMs) based on the perspective of the patient. As a basis for a new PROM, the aim of this study was to describe important aspects in life for adult individuals with diabetes. DESIGN: Semistructured qualitative interviews analysed using content analysis. SETTING: Hospital-based outpatient clinics and primary healthcare clinics in Sweden. PARTICIPANTS: 29 adults with type 1 diabetes mellitus (DM) (n=15) and type 2 DM (n=14). INCLUSION CRITERIA: Swedish adults (≥18 years) living with type 1 DM or type 2 DM (duration ≥5 years) able to describe their situation in Swedish. Purposive sampling generated heterogeneous characteristics. RESULTS: To live a good life with diabetes is demanding for the individual, but experienced barriers can be eased by support from others in the personal sphere, and by professional support from diabetes care. Diabetes care was a crucial resource to nurture the individual's ability and knowledge to manage diabetes, and to facilitate life with diabetes by supplying support, guidance, medical treatment and technical devices tailored to individual needs. The analysis resulted in the overarching theme 'To live a good life with diabetes' constituting the two main categories 'How I feel and how things are going with my diabetes' and 'Support from diabetes care in managing diabetes' including five different categories. CONCLUSIONS: Common aspects were identified including the experience of living with diabetes and support from diabetes care. These will be used to establish a basis for a tailored PROM for the NDR.

Upplevelser av lungcancervården: Patient och närståendes perspektiv : En empirisk studie med kvalitativ ansats

Syfte: Syftet var att utifrån patienters och närståendes nerskrivna berättelser ta del av deras upplevelser och erfarenheter av lungcancervården samt att utifrån dessa berättelser identifiera förbättringsidéer.Metod: Studien hade en empirisk design med kvalitativ ansats. Datainsamlingen skedde via idéböcker. Materialet analyserades genom kvalitativ innehållsanalys.Resultat: Två teman framkom i resultat. Det första temat var: Känslor av otrygghet och lidande kopplat till vården, livet och den egna sjukdomen. De tillhörande kategorierna var vårdlidande, livslidande och sjukdomslidande. Det andra temat var: Känslor av trygghet kopplat till goda mellanmänskliga relationer. Tillhörande kategori var goda mellanmänskliga relationer. Utökat psykosocialt stöd och utbildning i kommunikation till personal fanns bland de idéer för utveckling av lungcancervården som framkom.Konklusion: Denna studie visade att patienter med lungcancer kände otrygghet och lidande, till stor del orsakat av vården. Där goda möten ägde rum skapades trygghet och goda mellanmänskliga relationer. Utökat psykosocialt stöd och utbildning i kommunikation till personal fanns bland de idéer för utveckling av lungcancervården som framkom.

Patient participation : what it is and what it is not

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.

Patients' experiences of support for learning to live with diabetes to promote health and well-being : A lifeworld phenomenological study

Learning to live with diabetes in such a way that the new conditions will be a normal and natural part of life imposes requirements on the person living with diabetes. Previous studies have shown that there is no clear picture of what and how the learning that would allow persons to incorporate the illness into their everyday life will be supported. The aim of this study is to describe the phenomenon of support for learning to live with diabetes to promote health and well-being, from the patient's perspective. Data were collected by interviews with patients living with type 1 or type 2 diabetes. The interviews were analysed using a reflective lifeworld approach. The results show that reflection plays a central role for patients with diabetes in achieving a new understanding of the health process, and awareness of their own responsibility was found to be the key factor for such a reflection. The constituents are responsibility creating curiosity and willpower, openness enabling support, technology verifying bodily feelings, a permissive climate providing for participation and exchanging experiences with others. The study concludes that the challenge for caregivers is to create interactions in an open learning climate that initiates and supports reflection to promote health and well-being.