From uncertainty to gradually managing and awaiting recovery of a periodic condition- a qualitative study of parents´ experiences of PFAPA syndrome.

BACKGROUND: The prevalence of periodic fever, aphthous stomatitis, pharyngitis and cervical adenitis (PFAPA) syndrome is unknown. Although an uncommon condition, it is considered to be the most common autoinflammatory disease among children in many parts of the world. The knowledge of the consequences of the recurrent fever episodes for the child and its family are limited. This study explores the experiences of parents regarding the impact of the disease on the child's general well-being, the family's situation and how the family handles the associated challenges. METHODS: A qualitative approach was used, applying a modified version of Grounded theory for design, data collection and analysis. Data was collected from two different sources: communication between parents of children with PFAPA in a closed Facebook group and face-to face interviews with one of the parents of children diagnosed with PFAPA (6 mothers and 2 fathers). RESULTS: Parents described a lengthy process of how everyday life becomes affected by their child's recurrent fever episodes. This process is depicted in the following Grounded Theory core category: From uncertainty to gradually managing and awaiting recovery. The categories Uncertainty, Assurance, Gradually managing and Recovery describe the experienced illness trajectory. The illness representation illustrates the experiences/impacts of the periodic condition in the subcategories: Harmlessness-Severity, Disclosure of diagnosis, Impact on daily life and Regularity-Unpredictability. The children's well-being was highly affected by the symptoms during episodes. Parents experienced increased stress with constant fatigue, social constraints of family life and restricted career opportunities. Nevertheless, hope of recovery was constantly present. CONCLUSIONS: PFAPA is associated with a considerable burden on the child and the parents in daily life. Obtaining a diagnosis enables parents to move from a state of uncertainty towards a sense of coherence while awaiting recovery. Because of limited general knowledge of the condition and its impact on daily life, health care professionals need to become aware of the parents' efforts to mitigate the consequences of the recurrent episodes for the child and for the family as a whole.

Definitions, measurements and prevalence of fear of childbirth: a systematic review.

BACKGROUND: Fear of Childbirth (FOC) is a common problem affecting women's health and wellbeing, and a common reason for requesting caesarean section. The aims of this review were to summarise published research on prevalence of FOC in childbearing women and how it is defined and measured during pregnancy and postpartum, and to search for useful measures of FOC, for research as well as for clinical settings. METHODS: Five bibliographic databases in March 2015 were searched for published research on FOC, using a protocol agreed a priori. The quality of selected studies was assessed independently by pairs of authors. Prevalence data, definitions and methods of measurement were extracted independently from each included study by pairs of authors. Finally, some of the country rates were combined and compared. RESULTS: In total, 12,188 citations were identified and screened by title and abstract; 11,698 were excluded and full-text of 490 assessed for analysis. Of these, 466 were excluded leaving 24 papers included in the review, presenting prevalence of FOC from nine countries in Europe, Australia, Canada and the United States. Various definitions and measurements of FOC were used. The most frequently-used scale was the W-DEQ with various cut-off points describing moderate, severe/intense and extreme/phobic fear. Different 3-, 4-, and 5/6 point scales and visual analogue scales were also used. Country rates (as measured by seven studies using W-DEQ with ≥85 cut-off point) varied from 6.3 to 14.8%, a significant difference (chi-square = 104.44, d.f. = 6, p < 0.0001). CONCLUSIONS: Rates of severe FOC, measured in the same way, varied in different countries. Reasons why FOC might differ are unknown, and further research is necessary. Future studies on FOC should use the W-DEQ tool with a cut-off point of ≥85, or a more thoroughly tested version of the FOBS scale, or a three-point scale measurement of FOC using a single question as 'Are you afraid about the birth?' In this way, valid comparisons in research can be made. Moreover, validation of a clinical tool that is more focussed on FOC alone, and easier than the longer W-DEQ, for women to fill in and clinicians to administer, is required.

Person-centred, web-based support in pregnancy and early motherhood for women with Type 1 diabetes mellitus: a randomized controlled trial.

AIMS: To report results from and explore use of a multicentre, parallel-group, unblinded, randomized controlled trial testing the effectiveness in terms of well-being and diabetes management of a person-centred, web-based support programme for women with Type 1 diabetes, in pregnancy and postpartum. METHODS: Between 2011 and 2014, 174 pregnant women with Type 1 diabetes were randomly allocated (1:1) to web-based support and standard care (intervention group, n=83), or standard care (control group, n=91). The web-based support consisted of evidence-based information; a self-care diary for monitoring of daily activities; and peer support in a discussion forum. The primary outcomes (mean difference, measured at 6 months after childbirth) were well-being and diabetes management. RESULTS: No differences were found with regard to the primary outcome measure scores for general well-being [1.04 (95% CI -1.28 to 3.37); P=0.68] and self-efficacy of diabetes management [0.08 (95% CI -0.12 to 0.28); P= 0.75], after adjustment for baseline differences in the insulin administration method, nor with regard to the secondary outcome measures. CONCLUSIONS: At 6 months after childbirth, the web-based support plus standard care was not superior to standard care in terms of general well-being or self-efficacy of diabetes management. This might be explained by the low number of participants who had a high activity level. Few simultaneously active participants in the web-based programme and stressors in motherhood and diabetes postpartum were the main barriers to its use. Further intervention studies that offer web-based support are needed, with lessons learned from the present study. (Clinicaltrials.gov identification number: NCT015665824).

A tortuous route to a capable fatherhood: the experience of being a father to a child with severe haemophilia.

INTRODUCTION: Haemophilia is a chronic illness that affects the whole family as the child's reactions to the illness occur in interaction with the parents. Limited research has been conducted on how fathers of children with haemophilia experience their life situation. AIM: The aim of this study was to describe the lived experience of being a father to a child with severe haemophilia. METHOD: Individual, qualitative interviews were conducted with 14 fathers of 17 children with severe Haemophilia A. Data were analysed by means of a phenomenological hermeneutic method, including naïve reading, structural analysis and comprehensive interpretation. RESULTS: The results revealed that the fathers gradually grew into fatherhood through a process that can be explained in the metaphor, 'A tortuous road to a capable fatherhood'. The fathers experienced sorrow, powerlessness, concern and loss of a regular fatherhood after the child's diagnosis. The loss of an envisaged fatherhood emerged as the greatest sorrow of being a father to a child with haemophilia. When home treatment with factor concentrates functioned without the involvement of Health Care Personal (HCP), the fathers' sense of insufficiency decreased. CONCLUSION: A sense of being a capable father was associated with a sense of independence and control of one's life situation. Support from the Haemophilia Treatment Centre (HTC) in the learning process is essential for both parents of a child with severe haemophilia. Awareness of the fathers' struggle to feel capable is also vital while supporting the family in the first years after diagnosis.

Glycaemic control and diabetes care utilization in young adults with Type 1 diabetes.

OBJECTIVES: To explore how glycaemic control in young adults is related to diabetes care utilization during the transition to adult diabetes care and if these variables differ between males and females. METHODS: This is a retrospective, longitudinal design following patients' records from age 18-24 years. Adolescents (n = 104) connected to one paediatric outpatient clinic and referred to six different adult clinics were included. Data were collected regarding gender, age at diagnosis and transfer, yearly glycated haemoglobin (HbA(1c)) and body mass index, severe hypoglycaemia and diabetic ketoacidosis, retinopathy and diabetes care utilization. RESULTS: HbA(1c) decreased over time in females (P = 0.004) but not in males. Less than 10% had HbA(1c) in the recommended range during the study period. The decrease in severe hypoglycaemia and diabetic ketoacidosis was not significant. The prevalence of background retinopathy increased from 5 to 29% during the study period (P < 0.001). Mean transfer age was 19.8 years. The youths visited the paediatric clinic more often than the adult clinic (P < 0.001) and females visited adult care more often than males (P = 0.04). There was a steady decrease in the number of visits/year over time (P < 0. 001). Poor glycaemic control was associated with more visits for both males and females (P = 0.005) in adult care. CONCLUSIONS: As there was no gender difference in the relation between HbA(1c) and the number of visits in adult diabetes care, the higher frequency of visits in adult care for females cannot be solely explained by their glycaemic control. Gender differences regarding diabetes care utilization should be further explored.