Reliability and validation of Swedish translation of Beliefs about Medication Specific (BMQ-Specific) and Brief Illness Perception Questionnaire (B-IPQ) for use in adolescents with attention-deficit hyperactivity disorder.

Objectives: The purpose of this study was to assess the reliability and validity of Swedish translations of the Beliefs about Medicines Questionnaire-Specific (BMQ-Specific) and Brief Illness Perception Questionnaire (B-IPQ) for use in adolescents with ADHD.Methods: Forward and backward translations of the BMQ-Specific and B-IPQ scales to Swedish were conducted and reviewed by adolescents with ADHD and professionals. The validity and reliability of both questionnaires were investigated in a cross-sectional study of 101 adolescents (13-17 years) on a long-term prescription of ADHD medication recruited from two child and adolescent psychiatric outpatient clinics in Sweden.Results: Regarding the BMQ-Specific, principal component analysis (PCA) loadings confirmed the previously defined components of Specific-Necessity and Specific-Concern. The PCA for B-IPQ revealed two components, the first one, B-IPQ Consequences, captured questions regarding perceptions of the implication of having ADHD (items 1, 2, 5, 6 and 8) and the second one, B-IPQ-Control, the perceptions of the capability to manage the ADHD disorder (items 3, 4 and 7). The Cronbach alpha coefficients for BMQ-Specific-Necessity scale was α = 0.80, for BMQ-Specific-Concern scale α = 0.75, B-IPQ Consequences α = 0.74 and for B-IPQ-Control α = 0.44.Conclusions: The present results prove the Swedish translation of BMQ-Specific and B-IPQ to be valid and reliable for utilization in adolescents with ADHD. The PCA confirmed the original components for BMQ-Specific and the recent findings of two main B-IPQ components describing emotional and cognitive implications versus the capability for self-care maintenance of ADHD.

From political correctness to reflexivity: A norm-critical perspective on nursing education.

Education is important in shaping professional identity, including how one approaches norms and normalisation. In the analysis presented in this study, nursing students' own constructions of norms and normality from the outlook of their education are highlighted and problematised. To deepen the understanding of these matters, the aim of this study was to explore constructions of norms and normality among students in nursing education. Students studying in a nursing department at a Swedish university college were approached and asked to consider open survey questions targeting their views on norms and normality; 154 of them replied. After a discourse analytic approach to the data, we could see how the students constructed norms and normality as (a) instrumental instructions, consisting of easy-to-digest statements grounded in the profession's obvious moral and ethical values, (b) limiting and frustrating obstacles for personal freedom that were important to challenge, (c) rules to be obeyed for the stability of society and (d) a matter of reflection, with each individual being responsible for understanding differences in norms, perspectives and opinions. We conclude that nursing education would benefit from norm-critical perspectives, problematising students' own positions to norms, power and privilege.

Ostomy-related complications after emergent abdominal surgery: a 2-year follow-up study.

PURPOSE: The aim of this study was to prospectively evaluate ostomy-related complications and describe ostomy configuration in patients undergoing acute abdominal surgery. SUBJECTS AND SETTING: The study sample comprised 144 patients with a median age of 67 years (IOR: 53.5-78 years) who underwent an intestinal ostomy as part of an acute abdominal surgical procedure. The research setting was the surgical and gynecological clinics at the Sahlgrenska University Hospital in Gothenburg, Sweden. METHODS: Ostomy configuration, diameter, height, and the presence of stomal and peristomal complications were assessed by a WOC nurse 1 to 2 times while in hospital, once at the ostomy outpatient clinic 2 weeks after discharge, and at 3, 6, 12, and 24 months following ostomy creation. RESULTS: The types of ostomies evaluated were end colostomy (58%), end ileostomy (18%), loop ileostomy (17%), and loop colostomy (7%). Most stomal or peristomal complications occurred within 1 year after surgery (31 of 57; 54.4%). Necrosis, separation, and stenosis were most common in patients with an end colostomy. Peristomal skin complications occurred in 45% of subjects during the first 6 months after surgery. The ostomy's diameter decreased significantly during the hospital course and over the first 2 weeks following hospital discharge in patients with end colostomy (P< .0001), end ileostomy (P< .0081), loop ileostomy (P= .008), and loop colostomy (ns). Patients with a low ostomy had peristomal skin problems ranging between 21% and 57% over this time period. The frequency of using a pouching system that incorporated convexity was highest in the case of loop ileostomy, used in 67% at 6 months. CONCLUSION: During the first 2 weeks after discharge, the physical configuration of the ostomy evolves and the pouching system must be frequently adjusted by a WOC nurse. Stomal and peristomal complications are prevalent during the first 2 postoperative years and especially during the first 6 months.

Experiences of living with increased risk of developing colorectal and gynaecological cancer in individuals with no identified gene mutation.

BACKGROUND: In most families with familial cancers, mutations have not been demonstrated; thus, healthy individuals cannot be tested for mutation status. As a consequence, many persons at risk of familial cancer live with an unknown, but presumably high, risk of developing cancer. AIM: The aim of this study was to describe individuals' perceptions of living with an increased risk of colorectal and gynaecologic cancer where the gene mutation is unknown. METHODS: Interviews were conducted with 30 individuals with familial colorectal cancer. These persons have no known mutation and therefore should be considered presumptive carriers. In connection with the interviews, all participants were offered to take part in a surveillance programme consisting of a colonoscopy and gynaecological examinations. The interview transcriptions were analysed by the use of qualitative content analysis. RESULTS: Two themes emerged from the analyses: first, living under a threat with two subthemes, threat awareness and distancing oneself from the threat. The second theme, living with uncertainty, was divided into four subthemes: influencing one's family, being on the safe side, facing emotions evoked by examinations and trust and disappointment to the medical services. CONCLUSION: These persons live with a lifelong uncertainty with a varying intensity depending on what happens throughout the life trajectory. They have no diagnosis or patient group to relate to; therefore, the entire situation is often perceived as abstract. Thus, providing information and counselling needs to be more deeply elucidated, and we need to address both situational and existential ways of uncertainty. This will, however, require professionals of all disciplines to understand the meaning of uncertainty and help ensure that its adverse effects are decreased with adequate nursing interventions.

Long-term adjustment to living with an ileal pouch-anal anastomosis.

PURPOSE: The aim of this study was to describe long-term adjustment to life with an ileal pouch-anal anastomosis after surgery for ulcerative colitis, to investigate the relationship of pouch function to adjustment, and to explore factors affecting quality of life. METHODS: A total of 369 patients treated between 1982 and 1993 were included in the study. Questionnaires designed to assess bowel (pouch) function (Öresland score) and disease-specific adjustment (Swedish version of the Ostomy Adjustment Scale), plus open-ended questions regarding quality of life, were sent by mail. Open-ended questions were analyzed with qualitative content analysis. RESULTS: A total of 252 patients (84%) returned the disease-specific adjustment questionnaire (141 males/111 females); median age, 51 (range, 26-77) years; median follow-up, 15 (range, 10-21) years after construction of the ileal pouch-anal anastomosis. High adjustment ratings were found for all statements, with the maximum median score of 6 on 28 of the 36 items. Items with the lowest ratings (median score, 5) pertained to things one would do if not for the IPAA, feeling free to travel, ability to enjoy sexual activities, comfort with body image, ability to laugh about awkward situations, confidence in the appliance, and whether the surgery helped with decisions on what things are most important in life. Participants with the lowest adjustment scores had low bowel function scores (P < .0001). Open-ended quality of life questions were answered by 150 patients (59.5%). The most important areas for quality of life were health, family, restroom access, and friends. Five categories emerged from the qualitative content analysis: living a "normal" life, food restrictions, physical limitations, influence of restroom access on social life, and being dependent on medical care. CONCLUSIONS: Most participants had adjusted well to life with an ileal pouch-anal anastomosis and considered life to be normal. Good public restrooms were important for quality of life. Improving pouch function may help patients adjust to the postoperative state, but deeper understanding of reasons for poor adjustment despite good pouch function is needed.

The influence of personality traits and beliefs about medicines on adherence to asthma treatment.

AIM: To explore the influence of personality traits and beliefs about medicines on adherence to treatment with asthma medication. METHODS: Respondents were 35 asthmatic adults prescribed controller medication. They answered questionnaires about medication adherence, personality traits, and beliefs about medicines. RESULTS: In gender comparisons, the personality traits "Neuroticism" in men and "adherence to medication" were associated with lower adherent behaviour. Associations between personality traits and beliefs in the necessity of medication for controlling the illness were identified. Beliefs about the necessity of medication were positively associated with adherent behaviour in women. In the total sample, a positive "necessity-concern" differential predicted adherent behaviour. CONCLUSION: The results imply that personality and beliefs about medicines may influence how well adults with asthma adhere to treatment with asthma medication.

Concerns and quality of life before surgery and during the recovery period in patients with rectal cancer and an ostomy.

PURPOSE: Rectal cancer is the most common reason for a person to undergo ostomy surgery. The aim of this study was to assess concerns and health-related quality of life (HRQOL) before surgery and during the first 6 months following ostomy surgery in the presence of rectal cancer. SUBJECTS AND SETTINGS: The sample comprised 57 patients at a university hospital in Gothenburg, Sweden. Their median age was 66 years (range, 30-87); 35 men and 22 women participated in the study. METHODS: Participants prospectively answered questionnaires preoperatively, and at 1, 3, and 6 months postoperatively. Concerns were assessed using the rating form of the Inflammatory Bowel Disease Patient Concerns, and HRQOL was evaluated using the 36-Item Short Form Health Survey. Results were compared with population norms. RESULTS: Participants expressed concerns associated with developing cancer, being a burden on others, and related to the uncertain nature of disease. Health-related quality of life scores dropped significantly in 6 of 8 domains when preoperative scores were compared to those obtained 1 month postoperatively, but scores improved at 6 months. There were significant differences between preoperative study group scores and population norms on physical and emotional role function, social function, and for mental health domains. Significant differences persisted when population norms were compared to study group scores 6 months following surgery on all these domains except mental health. Participants identified good relations with significant others, social and leisure activities, psychological issues, and health as important for maintaining QOL. Obstacles to maintaining QOL included fatigue, pain, illness-induced limitations in life, and worries over what their new life would entail. CONCLUSION: Surgical management of rectal cancer raises concerns and profoundly impairs QOL during the first several postoperative months.

Work-integrated learning as a pedagogical tool to integrate theory and practice in nursing education - An integrative literature review.

It can be challenging for nursing students to navigate between theory and practice and to implement theoretical knowledge in real work situations and vice-versa. Work-integrated learning can support the students by enabling them to combine theoretical studies with practical work experience during their clinical placement. The aim of this integrative literature review was to identify models for the integration of theory and practice during clinical placements in nursing education by using work-integrated learning. Sixteen articles were found and analyzed using an integrative review method. Three themes were identified: 1) Supervisor support to enable students to develop a professional identity 2) Variety of modalities for teaching and 3) Collaboration between academic lecturers and clinical supervisors aimed at integrating theoretical and practical knowledge. Work-integrated learning enables students to integrate theory and practice, develop skills for knowledge-in-practice and prepares them for working life. It also supports the sharing of experiences between various healthcare professionals. This review identified a need for further research on work-integrated learning as a method for enhancing nursing students' workplace learning.

Norm-Critical Potential in Undergraduate Nursing Education Curricula: A Document Analysis.

The documents and literature that regulate nursing education are based on certain values and knowledge, and the underlying power in the curriculum raises the question of how health care professionals are molded during the course of their education. Norm criticism is a concept with its roots in critical pedagogy and gender and queer studies, emphasizing the origins as well as the consequences of marginalization, power, and knowledge of what is generally accepted as "normal" and "true." Norm criticism is used in this article to analyze the documents and literature underlying a nursing program in Sweden, which are shown to include a sometimes politically correct rhetoric, but one lacking a firm basis in social justice values.

Nursing students' attitudes toward care of dying patients: A pre- and post-palliative course study.

BACKGROUND: Many nursing students are not prepared to encounter death and care for patients who are at the end of life as newly educated nurses. The Frommelt Attitude Toward Care of Dying Scale (FATCOD) has been used to assess nursing students' attitudes during their education and changes have been noted. OBJECTIVE: To examine nursing students' attitudes towards care of dying patients before and after a course in palliative care. DESIGN: A descriptive study with a pre and post design. SETTINGS & PARTICIPANTS: Nursing students (n = 73) enrolled in a mandatory palliative course in the nursing programme at a Swedish university. METHODS: Data were collected before and after a palliative care course using FATCOD and qualitative open-ended questions. Data from FATCOD were analysed using descriptive and analytical statistics. The open-ended questions were analysed with qualitative content analysis. RESULTS: The students' mean scores showed a statistically significant change toward a more positive attitude toward care of dying. Students with the lowest pre-course scores showed the highest mean change. The qualitative analysis showed that the students had gained additional knowledge, deepened understanding, and increased feelings of security through the course. CONCLUSIONS: A course in palliative care could help to change nursing students' attitudes towards care of patients who are dying and their relatives, in a positive direction. A course in palliative care is suggested to be mandatory in nursing education, and in addition to theoretical lectures include learning activities such as reflection in small groups, simulation training and taking care of the dead body.

Self-Reorientation Following Colorectal Cancer Treatment - A Grounded Theory Study.

After colorectal cancer (CRC) treatment, people reorganize life in ways that are consistent with their understanding of the illness and their expectations for recovery. Incapacities and abilities that have been lost can initiate a need to reorient the self. To the best of our knowledge, no studies have explicitly focused on the concept of self-reorientation after CRC treatment. The aim of the present study was therefore to explore self-reorientation in the early recovery phase after CRC surgery. Grounded theory analysis was undertaken, using the method presented by Charmaz. The present results explained self-reorientation as the individual attempting to achieve congruence in self-perception. A congruent self-perception meant bringing together the perceived self and the self that was mirrored in the near environs. The results showed that societal beliefs and personal explanations are essential elements of self-reorientation, and that it is therefore important to make them visible.

Illness perceptions in relation to experiences of contemporary cancer care settings among colorectal cancer survivors and their partners.

Illness is constituted by subjective experiences of symptoms and their psychosocial consequences. Illness perceptions concern people's lay beliefs about understandings and interpretation of a disease and expectations as to disease outcome. Our knowledge about illness perceptions and coping in relation to the cancer care context among persons with colorectal cancer (CRC) and their partners is incomplete. The aim of the present study was to explore illness perceptions in relation to contemporary cancer care settings among CRC survivors and partners. The present research focused on illness rather than disease, implying that personal experiences are central to the methodology. The grounded theory method used is that presented by Kathy Charmaz. The present results explore illness perceptions in the early recovery phase after being diagnosed and treated for cancer in a contemporary cancer care setting. The core category outlook on the cancer diagnosis when quickly informed, treated, and discharged illustrates the illness perceptions of survivors and partners as well as the environment in which they were found. The cancer care environment is presented in the conceptual category experiencing contemporary cancer care settings. Receiving treatment quickly and without waiting was a positive experience for both partners and survivors; however partners experienced the information as massive and as causing concern. The period after discharge was being marked by uncertainty and loneliness, and partners tended to experience non-continuity in care as more problematic than the survivor did. The results showed different illness perceptions and a mismatch between illness perceptions among survivors and partners, presented in the conceptual category outlook on the cancer diagnosis. One illness perception, here presented among partners, focused on seeing the cancer diagnosis as a permanent life-changing event. The other illness perception, here presented among survivors, concentrated on leaving the cancer diagnosis behind and moving forward. The importance of illness perceptions among survivors, and the differences in illness perceptions between survivors and partners, should be recognized by healthcare professionals to achieve the goals of person-centered contemporary cancer care.

Sexual function after failed ileal pouch-anal anastomosis.

BACKGROUND AND AIMS: Failure of ileal pouch-anal anastomosis (IPAA) occurs in around 10% of the patients. Compared to patients with functioning pouches, health related quality of life is deteriorated after failure. Sexual function in patients with pouch failure is however poorly studied. The aim was to study sexual function in patients with pelvic pouch failure; patients with functioning pouches were used as controls. The hypothesis was that patients with pouch failure have worse sexual function. METHODS: 36 patients with pouch failure were compared with 72 age and sex-matched controls with ulcerative colitis and functioning pouches. The patients answered a set of questionnaires concerning sexual function (Female Sexual Function Index [FSFI] and International Index of Erectile Function [IIEF]), body image (BIS-scale) and health-related quality of life (SF-36). RESULTS: Both women and men with pouch failure scored lower than controls in the FSFI and IIEF questionnaires. However, none of the observations were statistically significant. The scores in the failure group (for both sexes) were below the cut-off level for sexual dysfunction. Scores for the BIS instrument were significantly lower for both sexes in the failure group. Women and men in the failure group scored lower than the controls in all domains of the SF-36, however statistically significant only for the social function domain in men. CONCLUSIONS: The hypothesis, that a failed IPAA is associated with worse sexual function, was not confirmed. Compared to patients with functioning pouches, patients with pouch failure have inferior body image.

Long-term outcome after ileal pouch-anal anastomosis: function and health-related quality of life.

PURPOSE: This study was designed to investigate long-term pouch function and health-related quality of life in a single, large cohort of patients with ileal pouch-anal anastomosis for ulcerative colitis. METHODS: Data from 370 patients were included in the study. Thirty-nine patients (11 percent) did not have a functioning pouch (failures) but were included in the health-related quality of life analyses. Pouch function (Oresland score) and health-related quality of life (Short Form-36) were evaluated by postal questionnaires. A total of 88 percent of the patients with a functioning ileal pouch-anal anastomosis returned the questionnaires vs. 76 percent of the failures. Median follow-up time after ileal pouch-anal anastomosis was 15 years vs. 11 years after failure. An age-matched and gender-matched reference sample (n = 286) was randomly drawn from the Swedish Short Form-36 database. RESULTS: Median bowel frequency was six per 24 hours: 76 percent emptied the reservoir at night, 23 percent had urgency, 12 percent had evacuation difficulties, and 17 percent experienced soiling during the day. Fifty-two percent of the males and 32 percent of the females suffered from soiling at night. More than one-half of the patients had occasional perianal soreness, 6 percent considered the pouch to be a social handicap, and 94 percent were satisfied with their pouch. Patients with a functioning ileal pouch-anal anastomosis did not differ from the reference sample on any Short Form-36 domain, except for a reduced score in General Health (P = 0.02). Pouch function was positively correlated to health-related quality of life. Patients with pouch failure had reduced health-related quality of life in most domains. CONCLUSIONS: Patients' satisfaction is high and functional outcome is good after ileal pouch-anal anastomosis. Poor pouch function affects health-related quality of life negatively. Patients with failure after ileal pouch-anal anastomosis are substantially limited in a variety of health-related quality of life domains.

Thirty years of experience living with a continent ileostomy: bad restrooms--not my reservoir--decide my life.

OBJECTIVE: This study describes long-term adjustment of people with a continent ileostomy. SUBJECTS AND METHODS: Subjects were 68 people (25 males and 43 females) who underwent an operation for ulcerative colitis with a continent ileostomy (Kock pouch). The median number of years subjects had lived with a continent reservoir was 31 (range 29-36) at follow-up and the median subject age was 60 (40-89). Subjects completed a 36-item questionnaire designed to assess adjustment to ostomy surgery. Subjects ranked the questionnaire using a 6-point Likert scale; a response alternative "not relevant" was available. Content analysis was conducted on subjects' responses to an open-ended question covering aspects of their quality of life. RESULTS: High median adjustment ratings were found for all 36 statements; the maximum median rating of 6 appeared on 28 items. Eight items with the lowest median ratings were in the following domains: embarrassing situations, activity, body image, sexuality, and good care. Five items on medical care and 3 items on sexuality were most frequently considered "not relevant" by respondents. The most frequently mentioned quality-of-life domains were family, health, friends, and employment. Content analysis indicated that respondents were self-reliant, although they indicated that they experienced considerable impediments to bowel evacuation outside of the home. CONCLUSIONS: In the long-term, people with a continent ileostomy have good self-care. The quality and availability of public restrooms, however, reduces their daily activities away from home.

Health-related quality of life and pouch function in continent ileostomy patients: a 30-year perspective.

PURPOSE: The principal aim of this study was to assess long-term pouch durability and health-related quality of life in an original series of patients operated on with a continent ileostomy. PATIENTS: Data from 68 of 88 patients who had a continent ileostomy performed at Sahlgrenska University Hospital between 1967 and 1974 were analyzed. Median age at follow-up was 60 (range, 40-89) years and median follow-up was 31 (range, 29-36) years. METHODS: Patients were sent a questionnaire on pouch function along with the Short Form-36 Health Survey 2.0. A random age-matched and gender-matched sample was drawn from the Swedish national Short Form-36 Health Survey norm database to compare with the patient group. RESULTS: The majority of the patients reported good physical condition and satisfactory pouch function. Patients evacuated the pouch a median of four times every 24 hours. Twelve patients (18 percent) had leakages. Forty-four patients (65 percent) had had at least one postoperative revision to restore continence. Generally minor peristomal skin irritation occurred in seven patients (10 percent). Patients with concurrent complaints (mostly age related) reported poorer health-related quality of life. Nevertheless, 78 percent of the patients rated their overall health as good, very good, or excellent. The patients' Short Form-36 Health Survey scores were comparable to reference values. CONCLUSIONS: Although revisional operations may be needed to restore continence, continent ileostomy has a good durability. Pouch function was satisfactory and patients' satisfaction was high. Health-related quality of life levels were similar to those of the general population.

Ulcerative colitis: female fecundity before diagnosis, during disease, and after surgery compared with a population sample.

BACKGROUND & AIMS: Women with ulcerative colitis generally have normal fertility. The aim of this study was to compare patients' fecundability before and after restorative proctocolectomy with ileal pouch-anal anastomosis with the fecundability of the general population. METHODS: Historical follow-up was performed on 343 consecutive female patients aged 10.6-40.5 years at surgery and a reference population of 1200 women aged 25-40 years. A total of 290 (85%) patients and 661 (55%) women in the reference population agreed to participate in a structured telephone interview concerning reproductive behavior and waiting times to pregnancy. Cox regression and Kaplan-Meier plots were used for analysis. RESULTS: Surgery significantly reduced the ratio of patient to reference population fecundability, which decreased to 0.20 (P < 0.0001). Before diagnosis and from diagnosis until colectomy, the fecundability of the patients was similar to that of the reference population. CONCLUSIONS: Female patients with ulcerative colitis have normal fecundity before surgical treatment. Surgery severely reduces female fecundity. Information about this reduction in fecundity should be given before surgery, and if a woman has an unfulfilled wish for pregnancy after surgery, early referral to a gynecologist is recommended.