Persistent Symptoms in People With Celiac Disease Despite Gluten-Free Diet: A Concern?

Studies show that people with celiac disease have reduced well-being and have persistent symptoms, mainly related to the gastrointestinal tract. The aim of this study was to analyze how persons in a celiac disease member association report their symptoms, health, and life satisfaction. A questionnaire, with both open and closed questions, was distributed to all members (n = 726) of a celiac association in the southeast of Sweden. The response rate was 74.5%, of which 524 (72%) said they had received a celiac disease diagnosis and were thus included in the study. Almost half of the participants (40.7%-42.2%) stated that they had persistent celiac disease symptoms despite following a gluten-free diet. Diarrhea, abdominal pain, and congestion were persistent symptoms reported and could contribute to a lower health status compared with people without persistent symptoms. The life satisfaction scale (LiSat-9) showed differences in 5 of 9 variables between the groups. Living with celiac disease is far from easy when you have persistent symptoms. People with celiac disease require follow-up by healthcare services, and a new treatment needs to be developed because following the gluten-free diet alone does not seem to alleviate symptoms in everyone.

Experiences among children and adolescents of living with spina bifida and their visions of the future.

Purpose Transitioning to independence may be problematic for persons with spina bifida (SB). Experiences of young persons with SB may provide insights into this group's needs for support. Therefore, the aim of this study was to investigate children's and adolescents' experiences of living with SB, their social and emotional adjustment, and their thoughts about becoming independent adults. Method Semi-structured interviews were conducted with young persons with SB (N = 8, age range 10-17 years). Social and emotional problems were assessed using Beck Youth Inventories. The interview transcripts were analyzed using qualitative content analysis. Results Three main themes were found: being a person with SB; everyday living as a person with SB; and preparing for life as an adult with SB. Indications of emotional and social problems were most prominent among participants with milder physical disability. Conclusions The findings indicate that young persons with SB may overestimate their independence. Other potentially problematic areas were lack of motivation, planning and preparedness for becoming independent. Research on transition to independence in this group should consider assistance at an early age in planning and executing strategies for independence. In addition, the potentially difficult situation for young persons with mild SB should be investigated further. Implications for rehabilitation Children and adolescents with spina bifida might lack the motivation and skills for planning their future and health care programmes should therefore include preparations for life as an adult. Clinical assessment of the level of independence should specifically distinguish between the activities they know how to do and what tasks they actually execute independently. Routine follow-ups should include screening for problems with social and emotional adjustment. Be aware of a potential condition-severity paradox whereby those with less severe impairment might have an increased risk of developing symptoms of social and emotional problems.

Improvement of communication and interpersonal competence in telenursing--development of a self-assessment tool.

AIMS AND OBJECTIVES: The aim of this study was to develop a self-assessment tool aiming to raise telenurses' awareness of their communication and interpersonal competence, and highlight areas in need of improvement. BACKGROUND: Several studies have revealed the need for development of communication competence in telenursing. Structured analyses of conversations with patients/callers, is one way to increase telenurses' awareness of their unique communication and interpersonal competence. DESIGN: Instrument development, Validation assessment using the method Content Validity Index. METHOD: The process to determine content validity was done in two stages; the development stage and the assessment stage. The development stage started with a literature search. The assessment stage was separated into two phases, assessment by an expert group and assessment and test by telenurses. The telenurses also participated in consensus discussions. RESULTS: A telenursing self-assessment tool with 58 items was developed. The items were sorted into five sections according to the nursing process. CONCLUSION: This study describes the thorough development process of the telenursing self-assessment tool to be used by telenurses in order to become aware of their unique communication and interpersonal competence when analysing their own conversations with patients/callers. As a formative tool it is meant to provide self-direction, feedback and coaching, and create learning opportunities. RELEVANCE TO CLINICAL PRACTICE: The self-assessment tool helps the telenurse to follow the nursing process, to be patient-centred, and it is meant to provide self-direction, feedback, and coaching, as well as create learning opportunities. The tool can contribute to the development of communication and interpersonal competence in telephone advice nursing. Further development of the tool may provide an objective scoring instrument for evaluating communication training and education in the field.

Everyday life for women with celiac disease.

The aim of this research was to explore how women with celiac disease experience everyday life. It is important that healthcare professionals understand what it is like to live with a chronic illness, and also the factors that affect the lives of women who have celiac disease. The study has a qualitative approach and the data were collected using interviews with 16 women. A conventional content analysis was used for the subjective interpretation of the qualitative interviews. Three main themes emerged in the analysis: illness trajectory and treatment, socializing with others, and feelings of loneliness and worry. The findings indicate that living with celiac disease affects the person's entire life from the past, in the present, and into the future, especially when daily routines must be altered. The women expressed a sense of loneliness and invisibility, especially when socializing with others. The diet could be a friend, enemy, obstacle, or opportunity in terms of enjoying a good life. Supporting women diagnosed with celiac disease appears to be a major task for healthcare professionals. Such professionals need to pay attention to women's symptoms, worries, and their feeling of being invisible.

Experiences of the Swedish healthcare system: an interview study with refugees in need of long-term health care.

BACKGROUND: Refugees needing long-term health care must adapt to new healthcare systems. The aim of this study was to examine the viewpoints of nine refugees in a county in Sweden, with a known chronic disease or functional impairment requiring long-term medical care, on their contacts with care providers regarding treatment and personal needs. METHODS: Semi-structured interviews with nine individuals and/or their next of kin. Inductive content analysis was used to identify experiences. RESULTS: ''Care organisations/resources'' and ''professional competence'' were the categories extracted. Participants felt cared for due to accessibility to and regular appointments with the same care provider. Visiting different clinics contributed to a negative experience and lack of trust. The staff 's interest in participants' lives and health contributed to a sense of professionalism. Most participants said the problems experienced were not related to their backgrounds as refugees. Many patients did not fully understand which clinic they were attending or the purpose of the care that the specific clinic provided. Some lacked knowledge of their disease. CONCLUSIONS: Health care was perceived as equal to other Swedish citizens and problems experienced were not explained by refugee backgrounds. Lack of information from care providers and being sent to various levels of care created feelings of a lack of overall medical responsibility.

Swedish women with coeliac disease in remission use more health care services than other women: a controlled study.

OBJECTIVE: To examine whether the perceived poor outcome of dietary treatment makes Swedish women with coeliac disease (CD) prone to use more health care services than other women. MATERIAL AND METHODS: The health care consumption over 36 consecutive months was examined for 137 Swedish women aged 20-80 years with CD in remission after living on a gluten-free diet for a median of 4 years (range 1-8 years). Comparisons were made with the health care consumption of 411 women in the general population matched for age and residence. RESULTS: The results show that women with CD use health care services annually a median of 5.0 times (range 0-76) that is more than female controls 3.6 (0-311) (p < 0.05) mainly in primary care and for complaints related to mental and behavioral disorders (ICD F), diseases of the digestive system (ICD K) and diseases of the musculoskeletal system and connective tissue (ICD M). CONCLUSIONS: Women with CD used health care services in keeping with studies indicating reduced health-related quality of life of people with this condition. The results provide evidence that women with CD in remission suffer from co-morbidities that may signal a need for a multidisciplinary follow-up of subjects with CD in Sweden.

Health promotion: facilitators and barriers perceived by district nurses.

PURPOSE: To investigate district nurses' (DN) opinions regarding facilitators and barriers in their work with health promotion. METHODS: Qualitative descriptive study. Interviews with a purposeful sampling of 54 DNs. Data were analysed with content analysis. RESULTS: The DNs expressed that nursing was the right profession to work with health promotion, and that it was an important task that was done by no one else. They experienced being stuck between disease-oriented and health promotion work and that priorities were wrong. The focus was not on health promotion and the time DNs could spend with health promotion was limited, and instead they had to perform elementary medical tasks. CONCLUSIONS: Tasks of a medical nature are given priority over health promotion. DNs lack support and no one asked or cared about the results from health promotion activities.

Advancing nursing documentation--an intervention study using patients with leg ulcer as an example.

AIM: The aim was to implement and evaluate a standardised nursing record, using patients with leg ulcer as an example, regarding the content of the nursing record and district nurses' experiences of documentation. METHOD: This was a prospective, stratified and randomised intervention study, with one intervention group and one control group. A standardised nursing wound care record was designed and implemented in the electronic patient record in the intervention group for a period of 3 months. Pre- and post-intervention audits of nursing records [n=102 and n=92, respectively] were carried out and 126 district nurses answered questionnaires pre-intervention and 83 post-intervention. RESULT: The standardised nursing wound care record led to more informative, comprehensive and knowledge-intensive documentation according to the audit and district nurses' opinions. Furthermore, the district nurses' self-reported knowledge of nursing documentation increased in the intervention group. When the standardised nursing wound care record was not used, the documentation was mostly incomplete with a lack of nursing relevance. There were no differences in the district nurses' experiences of documentation in general between the two groups. CONCLUSION: Using the standardised nursing wound care record improved nursing documentation meeting legal demands, which should increase the safety of patient. There was however a discrepancy between the nurses stated knowledge and how they carried out the documentation. Regular in-service training together with use of evidence based standardised nursing records, as a link to clinical reasoning about nursing care, could be ways effecting change.

Nursing documentation for communicating and evaluating care.

AIMS: To investigate the utility of electronic nursing documentation by exploring to what extent and for what purpose general practitioners use nursing documentation and to what extent and in which cases care unit managers use nursing documentation for quality development of care. BACKGROUND: As health care includes multidisciplinary activities, communication about the care given is essential. To assure delivery of good and safe care, quality development is necessary. The main tool available for communication and quality development is the patient record. In many studies, nursing documentation has been found to be inadequate for this purpose. DESIGN: This study had a cross-sectional descriptive design. METHODS: Data were collected by postal questionnaires, one to the general practitioners (n = 544) and one to care unit managers (n = 82) in primary health care. Data were analysed by descriptive statistical and qualitative content analysis. RESULTS: The general practitioners usually used the nursing record as the foremost source of information for treatment follow-up. The results, however, point out weaknesses and shortcomings in the nursing records, such as difficulties in finding important information because of a huge amount of routine notes. The care unit managers generally (74%) used the record for statistical purposes, while only half of them used it to evaluate care. CONCLUSION: Nursing records need more clarity and need to be more prominent regarding specific nursing information to fulfil their purpose of transferring information and to constitute a base for quality development of care. RELEVANCE TO CLINICAL PRACTICE: The results of this study can provide a part of a basis upon which a multi-professional patient record could be developed and which could also function as an alarm to managers at different levels to prioritize the development of nursing documentation.

Impact of primary care management on nursing documentation.

AIM: The aim was to investigate whether perceptions of electronic nursing documentation and its performance differed because of primary health care management. BACKGROUND: Success in leading people depends on the manager's personality, the context and the people who are led. Close proximity to clinical work, with manager and personnel sharing the same profession, promotes the authority to carry out changes. METHODS: This study comprised a postal questionnaire to district nurses and an audit of nursing records from two primary health care organizations, one with a uniprofessional (nursing) organization, and one with multidisciplinary health care centres with general practitioners and/or another profession as managers. RESULTS: Uniprofessional nurse management increased district nurses' positive perceptions of nursing documentation but did not affect documentation performance, which was inadequate regardless of management type. CONCLUSIONS: Positive perceptions of nursing documentation are bases for further development to a nursing documentation including a holistic view of the patient.

Prevention and health promotion and evidence-based fields of nursing - a literature review.

This paper summarizes the evidence constituting the foundation for preventive and health promotive work performed by nurses in primary care. This is a systematic literature review in six scientific databases. Forty original articles and 16 literature reviews met the inclusion criteria. After both authors independently read the articles, 25 were excluded and 15 included. One article was judged to be of high quality, five of medium quality and 10 of low quality. The articles of high and medium quality focused on alcohol counselling, coronary heart disease and diabetes. Of the 16 literature reviews from the Cochrane Library, 10 were found to be relevant and presented evidence. The subjects included smoking cessation, breast-feeding, prevention of falls among the elderly, asthma in children, diabetes and cardiovascular disease. Few studies in the area of prevention and health promotion are of adequate scientific quality, resulting in limited evidence for the effects of interventions.

National public health target awareness of staff at two organisational levels in health care.

OBJECTIVE: To investigate national public health target awareness at two organisational levels in health care comprising public officials and district nurses (DNs). To determine if the targets were incorporated in county council public health policy documents and if DNs worked in accordance with them. METHOD: Telephone interviews were performed with 21 county council officials and personal interviews were conducted with 54 DNs representing Sweden's 21 health care regions. RESULTS: Sixteen officials reported that their county council had documented public health programs, and in 13, some of the national targets were incorporated. Primary care was given major responsibility for public health. Two programs mentioned DNs' work. The officials said prevention should focus on all age groups and they emphasised the importance of health promotion. The DNs did not mention the national targets for public health and rarely mentioned targets at the county council level. Their work with prevention included self-care advice, changes in lifestyle, and preventing and relieving consequences of chronic disease. The DNs considered themselves as key persons in this work. CONCLUSIONS: The results reflect difficulties in implementing national targets and the existence of communication problems between political authorities, public officials, and "doers". Preventive work is nevertheless done in relevant areas.

The perceived meaning of a (w)holistic view among general practitioners and district nurses in Swedish primary care: a qualitative study.

BACKGROUND: The definition of primary care varies between countries. Swedish primary care has developed from a philosophic viewpoint based on quality, accessibility, continuity, co-operation and a holistic view. The meaning of holism in international literature differs between medicine and nursing. The question is, if the difference is due to different educational traditions. Due to the uncertainties in defining holism and a holistic view we wished to study, in depth, how holism is perceived by doctors and nurses in their clinical work. Thus, the aim was to explore the perceived meaning of a holistic view among general practitioners (GPs) and district nurses (DNs). METHODS: Seven focus group interviews with a purposive sample of 22 GPs and 20 nurses working in primary care in two Swedish county councils were conducted. The interviews were transcribed verbatim and analysed using qualitative content analysis. RESULTS: The analysis resulted in three categories, attitude, knowledge, and circumstances, with two, two and four subcategories respectively. A professional attitude involves recognising the whole person; not only fragments of a person with a disease. Factual knowledge is acquired through special training and long professional experience. Tacit knowledge is about feelings and social competence. Circumstances can either be barriers or facilitators. A holistic view is a strong motivator and as such it is a facilitator. The way primary care is organised can be either a barrier or a facilitator and could influence the use of a holistic approach. Defined geographical districts and care teams facilitate a holistic view with house calls being essential, particularly for nurses. In preventive work and palliative care, a holistic view was stated to be specifically important. Consultations and communication with the patient were seen as important tools. CONCLUSION: 'Holistic view' is multidimensional, well implemented and very much alive among both GPs and DNs. The word holistic should really be spelled 'wholistic' to avoid confusion with complementary and alternative medicine. It was obvious that our participants were able to verbalize the meaning of a 'wholistic' view through narratives about their clinical, every day work. The possibility to implement a 'wholistic' perspective in their work with patients offers a strong motivation for GPs and DNs.

The use of clinical guidelines for asthma, diabetes, and hypertension in primary health care.

OBJECTIVE: To investigate which clinical guidelines primary health care staff refer to regarding asthma, diabetes, and hypertension, the number of existing guidelines, and the organizational level at which they were drawn up, and whether there are different guidelines for the same disease, either in different primary health care centres or within individual centres. DESIGN: The study is descriptive. Data were obtained by telephone interviews and by procuring clinical guidelines regarding asthma, diabetes, and hypertension from primary health care centres. SETTING: Forty-one primary health care centres in one county in southeastern Sweden. STUDY PARTICIPANTS: General practitioners and registered nurses in primary health care. RESULTS: The telephone interviews showed that the staff referred to several guidelines covering each of the three diseases and these guidelines had been drawn up at five different organizational levels. The length of the clinical guidelines varied from 1 to 257 pages, and the number of guidelines for each disease ranged between 1 and 5. CONCLUSION: It was found that there were several documents covering the same disease that primary care staff referred to as 'guidelines', and that the length of the guidelines varied and they had been drawn up at different levels. A finding with possible serious consequences was that an old version of an asthma guideline was used in all primary health care centres in the study.

Electronic nursing documentation in primary health care.

The aim of this study was to describe and analyse nursing documentation based on an electronic patient record (EPR) system in primary health care (PHC) with emphasis on the nurses' opinions and what, according to the nursing process and the use of the keywords, the nurses documented. The study was performed in one county council in the south of Sweden and included 42 Primary Health Care Centres (PHCC). It consisted of a survey, an audit of nursing records with the Cat-ch-Ing instrument and calculation of frequencies of keywords used during a 1-year period. For the survey, district nurses received a postal questionnaire. The results from the survey indicated an overall positive tendency concerning the district nurses' opinions on documentation. Lack of in-service training in nursing documentation was noted and requested from the district nurses. All three parts of the study showed that the keywords nursing interventions and status were frequently used while nursing diagnosis and goal were infrequent. From the audit, it was noted that medical status and interventions appeared more often than nursing status. The study demonstrated limitations in the nursing documentation that inhibited the possibility of using it to evaluate the care given. In order to develop the nursing documentation, there is a need for support and education to strengthen the district nurses' professional identity. Involvement from the heads of the PHCC and the manufactures of the EPR system is necessary, in cooperation with the district nurses, to render the nursing documentation suitable for future use in the evaluation and development of care.

Exploring views on Swedish district nurses' prescribing--a focus group study in primary health care.

Since 1994 district nurses (DNs) in Sweden have been permitted to prescribe drugs from a limited list. This reform has met severe resistance from doctors and the opinions of general practitioners (GPs) and DNs have differed in many aspects. The aim of this study was to gain deeper understanding of the different opinions about DNs' prescribing and to explore the impact of the reform on primary care. Six focus group interviews were conducted, four with DNs and two with GPs. Data analysis revealed six categories, which were condensed into two dimensions. The dimensions were individual prerequisites, with the categories responsibility and knowledge, and organizational prerequisites, with the categories distribution of work, climate of co-operation, resistance and economic considerations. District nurses were very positive towards prescribing and had gained new knowledge through the compulsory training course and via discussions with pharmacists. Because of the responsibility required for prescribing, some nurses had introduced systems for self-monitoring. Prescribing was seen as a natural part of the nursing process. All interviewees could describe periods of resistance against the reform, and the head of the health centre was a key person for attitudes at the workplace. The DNs found the nurse prescribing reform very positive. They experienced a strengthening of professionalism and also thought that the reform was a natural development. Negative attitudes and opinions offset the positive feelings. The resistance that had appeared in the beginning had now turned into silent acceptance.

Unfavourable working conditions for female GPs. A comparison between Swedish general practitioners and district nurses.

OBJECTIVE: The aim was to analyse gender and occupational differences in the psychosocial working conditions of general practitioners (GPs) and district nurses (DNs) in Sweden. DESIGN: A stratified random sample of GPs (n = 566) and DNs (n = 554) from four county councils in Sweden. The overall participation rate was 83%. SETTING: Primary health care. MAIN OUTCOME MEASURES: A mailed questionnaire comprising 10 items providing demographic data and 36 items on psychosocial working conditions was used. The questionnaire had been tested for validity and reliability. A factor analysis included five items: strains and symptoms, professional content, social support at work, workload and job control. RESULTS: Professional content was the most positively rated aspect, whereas workload was the most negatively rated. GPs perceived a higher workload and lower social support than did the DNs. Female GPs scored significantly more negatively than both male GPs and female DNs did in four out of the five factors. Female GPs reported a high workload, low job control and low social support at work. Female DNs, too, reported a high workload, relatively low job control but fairly strong social support. CONCLUSION: Female GPs perceived more unfavourable psychosocial working conditions than both male GPs and female DNs did in the same organisational setting.