| 1. |
- Dellve, Lotta, 1965, et al.
(författare)
-
Stress and well-being among parents of children with rare diseases: a prospective intervention study
- 2006
-
Ingår i: Journal of Advanced Nursing. - Oxford : Wiley. - 0309-2402 .- 1365-2648. ; 53:4, s. 392-402
-
Tidskriftsartikel (refereegranskat)abstract
- AIM: This paper reports a study to assess stress, well-being and supportive resources experienced by mothers and fathers of children with rare disabilities, and how these variables were affected by an intensive family competence intervention. BACKGROUND: Despite diagnosis-specific studies, little overall knowledge exists about life-consequences for families of children with rare disorders. METHOD: We used a prospective design with baseline data and two follow-ups (at 6 and 12 months) after an intervention. The intervention aimed at empowering parents in managing their child's disability. Parents from all parts of Sweden visiting a national centre for families of children with rare disabilities were consecutively selected (n = 136 mothers, 108 fathers). Instruments of parental stress, social support, self-rated health, optimism and life satisfaction and perceived physical or psychological strain were used. Stratified analyses were carried out for mothers and fathers, and related to parental demands: single mothers, full-time employment, participation in a parent association, child's age and type of disability. RESULTS: We found high parental stress, physical and emotional strain among mothers, especially among single mothers. Fathers showed high stress related to incompetence, which decreased after the intervention. Decreased strain was found among full-time working mothers and fathers after the intervention. Parents' perceived knowledge and active coping and mothers' perceived social support were increased at follow-up. Factors related to parents' overall life satisfaction (57-70% explained variance) changed after the intervention, from being more related to internal demands (perceived strain, incompetence and social isolation) to other conditions, such as problems related to spouse, paid work and social network. CONCLUSION: Parents, especially fathers and full-time working parents, may benefit from an intensive family competence programme.
|
|
| 2. |
|
|
| 3. |
|
|
| 4. |
|
|
| 5. |
- Berg, Stefan, 1959, et al.
(författare)
-
Long Episodes of Rash and Fever : Chapter 100
- 2019
-
Ingår i: Pediatric Immunology : A Case-Based Collection with MCQs, Volume 2. Rezaei, N. (red.). - Switzerland AG : Springer Nature. - 9783030212629 ; , s. 527-531
-
Bokkapitel (övrigt vetenskapligt/konstnärligt)
|
|
| 6. |
|
|
| 7. |
|
|
| 8. |
- Norrby, Ulla, 1937, et al.
(författare)
-
Health-related quality of life in children diagnosed with asthma, diabetes, juvenile chronic arthritis or short stature
- 2006
-
Ingår i: Acta Paediatr. - : Wiley. - 0803-5253 .- 1651-2227. ; 95:4, s. 450-6
-
Tidskriftsartikel (refereegranskat)abstract
- AIM: 1) To assess the reliability and validity of the Swedish version of the Child Health Questionnaire (CHQ), 2) to determine the correlation between children's and parents' responses to the CHQ, and 3) to describe and compare responses to the CHQ of four diagnostic groups. METHODS: A total of 199 Swedish children aged 9-16 with diagnoses of asthma (n = 53), diabetes (n = 48), short stature (n = 51) and juvenile chronic arthritis (JCA, n = 47) and their parents answered the CHQ and relevant validation instruments at a clinic check-up. Coefficient alphas were determined for all dimensions of the instrument, and all but four had acceptable to very good reliability (0.75-0.94). RESULTS: Concerning construct validity, the CHQ correlated significantly with appropriate dimensions of the validation instruments. In general, there were significant correlations between the children's and parents' responses. Comparisons between the diagnostic groups showed several significant differences. The short stature group had the highest quality of life and the JCA group the lowest. There were no sex differences, but children who had not reached puberty scored better on the dimensions of mental health and self-esteem. CONCLUSION: The Swedish version of the CHQ is a reliable and valid instrument. Furthermore, it is recommended to ask children themselves about their health-related quality of life.
|
|
| 9. |
- Rydenman, Karin, 1982, et al.
(författare)
-
PFAPA syndrome - An important differential diagnosis in children with recurrent fever : PFAPA-syndrom – en viktig differentialdiagnos hos barn med återkommande feberepisoder.
- 2019
-
Ingår i: Läkartidningen. - 1652-7518. ; 116
-
Forskningsöversikt (refereegranskat)abstract
- Periodic Fever, Aphthous Stomatitis, Pharyngitis and Cervical Adenitis (PFAPA) syndrome is the most common autoinflammatory disorder among children in many parts of the world and an important differential diagnosis in children presenting with recurrent fever episodes. Commonly, PFAPA has an onset under the age of 5 years. Fever episodes in PFAPA usually last 3-6 days and are associated with one or more of the cardinal symptoms aphthous stomatitis, pharyngitis and cervical adenitis. The fever episodes typically recur with an interval of 3-6 weeks, often with a striking regularity. During the episodes, the patient has elevated inflammatory variables such as CRP and serum amyloid A (SAA) and may sometimes have additional symptoms such as abdominal pain, nausea and leg pain. Between the fever episodes, the patient is typically free of symptoms with normalized inflammatory variables and grows normally. Awareness and recognition of PFAPA is key to providing the patient with adequate treatment and avoiding misdiagnosis.
|
|
