Development and validation of the preparedness for Colorectal Cancer Surgery Questionnaire: PCSQ-pre 24.

PURPOSE: The aims of the study were to develop and psychometrically evaluate a patient-reported outcome instrument for the measurement of preoperative preparedness in patients undergoing surgery for colorectal cancer. METHODS: This study was conducted in two stages: a) instrument development (item generation, construction of items and domains), empirical verification and b) instrument evaluation. A questionnaire with 28 items measuring preparedness for surgery was developed covering four domains and was tested for content validity with an expert panel and with patients. Psychometric testing of the questionnaire was conducted on 240 patients undergoing elective surgery for colorectal cancer. RESULTS: The scale content validity index of the preparedness items was 0.97. The final version consisted of 24 items measuring 4 subscales: Searching for and making use of information, Understanding and involvement in the care process, Making sense of the recovery process and Support and access to medical care. Confirmatory factor analysis revealed good model fit with standardized factor loadings ranging from 0.58 to 0.97. A well-fitting second-order factor model provided support for a total preparedness score with second-order factor loadings ranging from 0.75 to 0.93. The ordinal alpha values of the four latent factors ranged from 0.92 to 0.96, indicating good internal consistency. The polyserial correlations with the total score were 0.64 (p < 0.01) for the overall preparedness question and 0.37 (p < 0.01) for overall well-being. CONCLUSION: The Swedish Preparedness for Colorectal Cancer Surgery Questionnaire for use in the preoperative phase demonstrated good psychometric properties based on a sound conceptualization of preparedness.

Enabling sense-making for patients receiving outpatient palliative treatment: A participatory action research driven model for person-centered communication.

OBJECTIVES: In clinical palliative cancer care, the diversity of patient concerns over time makes information provision a critical issue, the demands of information-seeking patients presenting a challenge to both the communicative and organizational skills of the health provider. This study puts forward a practice model for communication between patients, their family members, and professional health providers during ongoing palliative chemotherapy; a model which supports the providers in enabling person-centered communication. METHOD: A constant comparative analysis adapted to participatory action research was applied. The model was developed step-wise in three interrelated cycles, with results from previous studies from palliative cancer care processed in relation to professional health providers' experience-based clinical knowledge. In doing this, focus group discussions were carried out with providers and patients to develop and revise the model. RESULTS: The Enabling Sense Making model for person-centered communication gave rise to three domains (which are also the major communicative actors in palliative care): the patient, the family, and the provider. These actors were placed in the context of a communicative arena. The three respective domains were built up in different layers discriminating between significant aspects of person-centered communication, from the manifest that is most usually explicated in dialogues, to the latent that tends to be implicitly mediated. SIGNIFICANCE OF RESULTS: The model intends to facilitate timely reorientation of care from curative treatment or rehabilitation to palliation, as well as the introduction of appropriate palliative interventions over time during palliative phases. In this way the model is to be regarded a frame for directing the awareness of the professionals, which focuses on how to communicate and how to consider the patient's way of reasoning. The model could be used as a complement to other strategic initiatives for the advancement of palliative care communication. It needs to be further evaluated in regard to practice evidence.

Structure and content in consultations with patients undergoing surgery for colorectal cancer.

PURPOSE: To explore the structure and content of pre-planned consultations as part of the care and treatment of patients undergoing surgery for colorectal cancer. METHODS: The study was based on 50 transcripts of audio-recorded pre-planned consultations between seven patients and 36 healthcare professionals from the time of diagnosis, pre-operative consultation, discharge consultation and pathology report in a colorectal unit. RESULTS: The spread of consultation time between professions was considerable. Total mean consultation time for patients during the care process (7 consultations/patient) was 111 min (range 83-191). The mean consultation time for surgeons was 18 min (7-40), anaesthesiologists 12 min (5-18) and nurses 14 min (5-49). Patients took up 40% of the word space, healthcare professionals used 59% and significant others 1%. Word space changed in such a way that the patient became more active towards the final consultation. Neither during the diagnosis consultation nor during the pre-operative consultation did the patients meet the operating surgeon. Six major subjects emerged: general health, diagnosis, surgical procedure, pre-operative preparations, recovery and treatment and follow-up. CONCLUSIONS: There is a need for clearer structure in the consultations. Most consultations lacked a clear introduction to the subject of the conversation. The study makes it possible to develop methods and structure for supporting conversations in which the patient is given space to help with the difficult issues present after undergoing surgery for colorectal cancer. The study also contributes to providing knowledge of how to organise surgical consultations in order to optimise person-centeredness, teamwork and clinical efficiency.

The experience of being a female carrier of haemophilia and the mother of a haemophilic child.

Limited research has been conducted on how the female carrier experiences her life with a haemophilic child, and earlier studies are mostly questionnaire-based. No previous qualitative study on the female carrier's situation has been conducted in Sweden. The aim of the study was to describe the lived experience of being a carrier of severe or moderate haemophilia and of being the mother of a haemophilic child. The study was conducted via qualitative interviews and analysed by means of a phenomenological hermeneutic method; a total of 13 haemophilia carriers were interviewed in 2010. Being a carrier of haemophilia and having a haemophilic child was life changing. The women moved from a state of sad, guilty chaos to reconciling themselves with the new situation. Our analysis revealed three acts in which phenomena appeared: the time after diagnosis, the turning point and reconciliation with a changing life. Emerging as crucial to the process of reconciliation with a changing life was a sense of being fully informed and supported. The Haemophilia Treatment Centre (HTC) should create an environment that encourages learning, and the team should invite and encourage the woman's partner to be actively involved in the child's care. Moreover, the results indicate that it would be beneficial to invite female carriers to receive patient education at the HTC before they plan to start a family. During this visit, the woman may gain a greater understanding of her carriership to prepare her for future decisions concerning prenatal diagnosis, for example.

Pedagogical encounters between nurses and patients in a medical ward--a field study.

BACKGROUND: Patient teaching is regarded as an important aspect of nursing care as well as an essential part of the nursing profession. In nursing practice, a distinction can be made between formal (planned) and informal (spontaneous) patient teaching. The major part of patient teaching research is within the area of formal teaching. In spite of the fact that spontaneous teaching occurs in everyday nursing practice, there is a lack of knowledge in this area. OBJECTIVES: The aim was to illuminate pedagogical dimensions in nursing situations and informal teaching. DESIGN: The study is a fieldwork study within the frames of a life-world phenomenological tradition. PARTICIPANTS AND SETTING: Fifteen registered nurses in a general medical ward of a university hospital in Sweden were followed in their daily work with patients. Twelve patients suffering from various chronic diseases were interviewed. METHODS: The observations comprised a total of 173 h on 34 separate occasions. Informal dialogues with nurses were carried through. Further, formal interviews were conducted with 12 of the observed patients. The data were analysed by means of a life-world phenomenological approach. RESULTS: Two different pedagogical encounters are presented: "Players in different field pedagogical encounters", in which there is a breakdown in the pedagogical dialogue, and "Players in same field pedagogical encounters", in which the pedagogical dialogue develops. Patients' experiences of seeking and acquiring knowledge within these two types of encounter are characterised as "worry" versus "preparedness". Patients' dignity is either threatened or supported, depending on the type of encounter. CONCLUSIONS: Health care organisations have to create a pedagogical climate where "Same field pedagogical encounters" can be created. The nurse has to view the patient as a learning person in order to help the patient to achieve "preparedness". "Preparedness" is described as a cognitive-emotive-existential state and emphasised as an important goal of patient teaching.

Context and methodological decontextualization in nursing research with examples from phenomenography.

In both human science and nursing research the concept of context is important. However, context can be understood in different ways. The aim of this article is to elucidate, discuss and problematize context, decontextualization and recontextualization in some health care-related phenomenographical studies. A further aim is to problematize the concept of context in a wider perspective of human science, in order to gain a better understanding of phenomenographical research related to nursing care. Our analysis indicates that the complex phenomena which characterize nursing research demand a broad contextual understanding. Both the local or immediate context and the global or mediated context must be considered, as they are dialectically related. This includes the informants' experiences of the phenomenon of interest as well as the socio-cultural discourse. A balance between openness and pliability to the phenomenon is suggested. Reflection is considered an important tool in this process. Within phenomenography, the interest is directed towards conceptions of certain aspects of the world. Thus, context in a wider sense is given a subordinate role. Accordingly, phenomenography is considered to have limited applicability in nursing research when complex phenomena are to be studied.