Caring about symptoms in person-centred care

In the present article, we emphasize the symptom experience perspective in person-centred care and discuss barriers to implementation of this approach. There are obstacles to overcome: the diversity of understandings of symptoms in clinical settings, the current biomedical discourse and the incompleteness of symptom research. Since the 19th century, the biomedical perspective has been powerful in conceptualizing symptoms in terms of pathology and diagnosis. Many diagnoses conjure up preconceived notions about the persons receiving them. This perspective may influence person-centred care negatively. Yet symptoms often mean something beyond the diagnosis. Recognizing this discrepancy, it is crucial that we consider a perspective that starts from each person’s symptom experience, thus complementing the biomedical perspective. Using the notion caring about symptoms, we advocate a person-centred approach that includes a symptom experience perspective. This requires health-care professionals to be skilled in listening to patient narratives and acquire knowledge about how symptom experiences can be individually expressed and interpreted. Listening to symptom experiences may give insights into the personal meaning of illness as well as information about bodily and social restrictions caused by symptom distress. In this way, caring about symptoms will improve the prerequisites for establishing person-centred care planning.

Education of Parents When a Child Born with an Imperforate Anus;Does It Improve the Health of the Child?

Objectives: To describe and investigate the value of an education program for parents of children born with an imperforate anus in order to help them cope with the new situation of having a stoma. A comparison is made with a group of parents following routine hospital. A secondary aim was to illuminate the parents’ feelings and concerns in the first month after the birth of the child. Subjects and methods: The program was tested in 20 Vietnamese mothers of babies born with an imperforate anus;10 followed an intervention comprising an education program and 10 the ordinary routine hospital. The study design is both qualitative and quantitative. The mothers were interviewed, using open-ended questions, within a week of their child’s birth and then repeatedly for up to one month. Finally, the conditions of children were accessed on their return to the hospital for the second operation after one month of care at home. The qualitative data were subjected to content analysis. Results: All mothers felt sad and worried in the beginning, but this quickly changed to confidence, particularly among mothers in the intervention group who received education. While at home, mothers in both groups had financial concerns, as they were unable to work as much as expected and also had to buy equipment for colostomy care. The mothers in the control group complained about a lack of knowledge and how it affected the care of their child. The mothers in the intervention group, however, felt confident in their caring even at home. When the families returned for the second operation, the children in the intervention group were significantly healthier, had increased more in weight, and had fewer complications and emergency return visits to hospital compared to the control group. In the control group skin problems around the stoma, diarrhea, bleeding or constipation while at home were reported (p < 0.01). Conclusion: The education improved the care at home resulting in healthier children and more confident parents.

Satisfying Toilet Needs in Pre-School —Experiences of 5 - 6 Years Old

Background: It is known that, for reasons of hygiene and/or anxiety, some first year primary school children actively choose to avoid going to the toilet whilst at school, while at the same time many young children’s primary care visits are due to urinary tract and bowel problems. By this age most children can recognise the bodily signals indicating the need for a toilet visit, and can independently perform the associated routines. Aim of this study was to describe the experience of healthy 5 to 6 years old when needing and using toilets whilst at pre-school. Methods: A qualitative descriptive method was used. Seventeen children aged 5 to 6 years were interviewed. Results: Nearly all used the toilet when the need arose, but there were times during the day when their freedom to use the toilet was restricted. Most children experienced periods of waiting outside the toilet and a long wait could result in a decision to not use it. On those occasions when help was needed, it was usually necessary to shout once or more in order to attract the teacher’s attention. Some children found the toilets clean and fresh while others found them dirty and smelly. Privacy during toilet visits was desirable among the children but queue outside the toilet was a cause of worry. Conclusion: The children were mostly able to use the toilet whilst at preschool, despite the challenges to their senses and integrity and occasionally issues with the teacher’s rules. The need for privacy often had to yield to the teacher’s need to control the children or even because toilet doors and/or locks were not adapted to the children’s requirements.

Miscarriage—Evidence Based Information for the Web and Its Development Procedure

Objective: The aim of this paper is to describe the process of developing web information on miscarriage based on scientific evidence, for women and couples in Sweden experiencing miscarriage. Method: A participatory design was used which included researchers, professional experts and users. A participatory design was used involving researchers, professional experts and users. The information was developed in six stages: 1) identifying the needs of information;2) identifying and constructing the main areas of information and its paths;3) identifying and inviting experts for revision;4) developing the text;5) reviewing the text;6) design and structuring for adaption to website. Results: The text of information developed gradually based on the seven steps. The final text comprised three parts: 1) what is miscarriage;2) experiences of miscarriage;3) processing and planning for new pregnancy. Conclusion: Using participatory design was time and resource consuming, however it was functional for producing appropriate information for the target group. The developed evidence based facts text is assumed to be a complement to the information that is provided by the health care system.

Health, Wellbeing and Self-Esteem: Web-Based Support in Children with Urogenital or Bowel Malformation

Children with urogenital malformation or bowel disturbances are a vulnerable group and are at risk of experiencing ill health. At school they have to face and cope with situations they are unused to and often feel excluded. There is a lack of studies investigating prevention of ill health in this group of children. Objective: The aim of the study was to investigate the health/well-being and self-esteem, before and after a one-year intervention comprising person-centred, web-based learning support, in preschool children born with malformations in the urethra, bladder, genitals and/or bowel. Study design: Nine boys and one girl participated, aged 3 - 7 years (study group) with diagnoses of epispadia, bladder exstrophy, urethra valves and Hirschprung’s disease. Two questionnaires were used, developed to measure index of health/wellbeing and self-esteem in younger children. In the study group, the interviews were repeated after one year. The group was compared with a control group of 20 healthy, age-matched children. Results: Before the intervention, there were no differences in wellbeing (Children condition index) between the study group and the control group. One year after the start of the web-based preschool, wellbeing in the study group had slightly improved, but not significantly compared to before the intervention. No significant difference was found compared to the control group. When measured self-esteem (I think I am) before the intervention, the study group had significantly better self-esteem compared to the control group. One year later, there was a slight improvement in self-esteem, but two children scored worse in the domain Psychological wellbeing. In comparison with the group of healthy children, the self-esteem in the study group was better for total sum (p = 0.0002). Discussion: Wellbeing and self-esteem seem to be good in children aged 3 - 7 years with uro-genital and bowel malformations, according to the findings of this study. This is better than reports concerning older children. Despite high initial values compared to healthy children, continued, but not significant, improvement in wellbeing and self-esteem was shown one year after intervention. Conclusions: The results of the intervention aimed at promoting health, wellbeing and self-esteem are promising but a longer-term follow-up in a larger group of children is needed.

Micturition pattern in young boys with posterior urethral valves—A pilot study in small boys who are potty-trained from infancy

Introduction: To investigate if potty training from infancy can affect bladder dysfunction in boys with posterior urethral valves (PUV). Subjects and Methods: The voiding pattern and emptying ability were followed using the 4-hour voiding observation method in 17 Vietnamese boys with PUV aged 3 months to 4 years who had been potty-trained from infancy. This group was compared with a group of healthy Vietnamese boys. Results: In the boys with PUV, the bladder volume increased according to age, and interrupted voiding was rare. However, when comparing boys with PUV with healthy boys, a significant difference was noted with more frequent voidings and lower voided volumes in the age group 0 - 1 year (P < 0.001). Despite the minimum amount of residual urine, average 8 ml or less in the boys with PUV, the age groups 1 - 2 and 2 - 4 years had significantly higher residual volumes compared with those of the healthy boys (P The findings from the 4-hour voiding observation showed few signs of dysfunctional bladder in the Vietnamese boys with PUV, including residual urine, even if there were signs of dysfunction compared with the healthy Vietnamese boys. Potty training from infancy could favor early bladder rehabilitation in boys with PUV.