Ullabeth Sätterlund Larsson

Patient involvement in decision-making in surgical and orthopaedic practice: the Project Perioperative Risk.

As part of the Project Perioperative Risk (PROPER), which is a clinical and epidemiological study of surgical complications, patient involvement in the decision to operate was evaluated by means of a questionnaire. The sample of 666 patients, on the waiting list for an operation, received a questionnaire on a broad range of issues concerning their involvement in the decision-making process one week before the operation. The results show that 41% regarded the decision to have an operation as a joint patient-doctor decision, in 29% of the cases the doctor advocated an operation and in 8% the patient asked to be operated. A clear majority, 73% felt involved in the decision-making as much as they wished. Two groups--women and immigrants from non-European countries--were least satisfied with their involvement and they also found the decision more difficult to make. In the discussion, it is argued that the comparatively high degree of patient satisfaction with involvement in the decision-making process cannot be taken as evidence of a high level of influence in an absolute sense. In a normative perspective--and considering the fact that the increased responsibility of the health sector is aimed at involving patients in decision-making in health matters--patient satisfaction can just as well be understood as resulting from low expectations with respect to ones own influence. The results also indicate that patients information needs when facing surgery relate to three issues; possible complications, precise nature of the operation as such, and nature and consequences of anaesthetic procedures.

Motives for becoming and remaining member of patient associations: a study of 1,810 Swedish individuals with cancer associations

Patient associations for cancer patients (PACPs) are increasing in number as well as in the number of members. We utilised a questionnaire to investigate how members of 13 PACPs motivated their memberships. The study included 1,810 individuals who had been treated for breast cancer, gynaecological cancer, or prostate cancer. Through questionnaires these individuals were asked to articulate why they became and chose to remain members. Descriptive statistics and content analyses were used to analyse the open and structured questions. Motives for membership reflected both benefits for the individuals and the welfare of others; themes such as ‘needs related to having cancer’ (reported by 33% as motives for becoming members; 14% for remaining members), ‘wanted to use the PACP’s information and activities’ (24%; 38%) and ‘wanted to support the PACP and its possibilities to have an impact’ (9%; 20%) were dominant. The theme ‘needs and experiences related to having cancer’ was more common among members with breast cancer (38%) and ovarian cancer (36%) than among members with prostate cancer (25%), whereas 53% of men with prostate cancer reported ‘wanted to use the PACP’s information and activities’ compared to 19–9% among female members. The motives showed that needs related to having cancer and that activities and information offered by the PACPs were important to the members, as were their beliefs that the PACP prompted issues that were important to the members.

Sensitive patient-doctor communications relating to the breasts and prostate.

This study was carried out at two primary health care centers in separate counties in central Sweden. Data derive from recordings of consultations of 42 patients and their general practitioners. The patients and the doctors were interviewed separately after each consultation. The analysis is based on the audio-recordings as well as on verbatim transcripts of the consultations. It focuses on communications about the topics relating to the breasts and the prostate and how these topics are dealt with during the consultations. These topics were brought up in seven (29.2%) of the 24 consultations with female patients and four (22.2%) of the 18 consultations with male patients. A common pattern of the outcome as regards information was that the patient was given neither the tool, i.e., knowledge about bodily functions, nor methods for detecting an abnormality. The patients indirectly evinced ignorance with regard to the body, examinations, and diseases, and did not ask any direct questions that required answers.