| 1. |
- Hemmingsson, Helena, et al.
(author)
-
Agreements and disagreements between children and their parents in health-related assessments
- 2017
-
In: Disability and Rehabilitation. - : TAYLOR & FRANCIS LTD. - 0963-8288 .- 1464-5165. ; 39:11, s. 1059-1072
-
Research review (peer-reviewed)abstract
- Purpose: To systematically review research concerning parent-child agreement in health-related assessments to reveal overall agreement, directions of agreement, and the factors that affect agreement in ratings. Method: The Uni-Search and five additional databases were searched. Childrens health issues were grouped into psychosocial issues including autism and ADHD, and physical and performance issues including pain. Measures used for comparison were those addressing (a) psychosocial functioning, (b) physical and performance functioning, and (c) health-related quality of life. Results: Totally, 39 studies met the inclusion criteria, comprising 44 analyses in all since four studies contained more than one analyses. Moderate child-parent agreement was demonstrated in 23 analyses and poor agreement in 20 analyses. Several analyses found more agreement on observable/external than on non-observable/internal domains. Overall, parents considered their children had more difficulties than did the children themselves, although there were indications that for children with physical performance issues, parents may underreport their childrens difficulties in emotional functioning and pain. There were no consistencies in differences between childrens and parents ratings on levels of agreement with respect to the childrens health issue, age or gender. Conclusions: Discrepancies between child and parent reports seem to reflect their different perspectives and not merely inaccuracy or bias. IMPLICATIONS FOR REHABILITATION In general, parents consider their children to have more difficulties - or more extensive difficulties than the children themselves think they have. The perspectives of the child and his or her parents should be sought whenever possible since both constitute important information concerning the childs health and well-being. Children with physical and performance issues reported more difficulties than their parents concerning the childrens emotional functioning and pain. Clinicians should prioritize obtaining childrens views on subjective aspects such as emotional issues as well as on pain.
|
|
| 2. |
- Jonsdottir, Sigridur Sia, et al.
(author)
-
Pain management and medical interventions during childbirth among perinatal distressed women and women dissatisfied in their partner relationship : A prospective cohort study
- 2019
-
In: Midwifery. - : Elsevier. - 0266-6138 .- 1532-3099. ; 69, s. 1-9
-
Journal article (peer-reviewed)abstract
- Objective: The purpose of this study was to investigate possible associations between distress in pregnant women and their use of pain management and medical interventions. Furthermore, we assessed the effects of reported dissatisfaction in relationship with their partner, or weak social support. Design: This was a prospective cohort study. Setting: Women were invited to participate while attending prenatal care at participating Icelandic health care centres. Birth outcome data were obtained from the hospitals where these women gave birth. Participants: Women in this study participated in a research project where 2523 women were screened three times during pregnancy for anxiety and depression. Women who had positive results at screening were invited to a semi-structured interview during pregnancy as well as every fourth woman who had negative results. Five hundred and sixty-two women participated in the interviews and the final sample was 442 women. Measurements: Distress was defined as symptoms of anxiety, stress and depression. The Edinburgh Post-partum Depression Scale (EPDS) and the Depression, Anxiety and Stress Scales (DASS) were used for screening purposes. During the interview, the women answered the Dyadic Adjustment Scale (DAS), the Multidimensional Scale of Perceived Social Support (MSPSS), and the Adverse Experienced Interview (AEI). The main outcome variables that were obtained from the women's childbirth records were: (1) use of pain management, categorized as: epidural analgesia, non-pharmacological pain management, nitrous oxide, pharmacological medication, or no pain management; (2) medical interventions categorized as: induction, stimulation, and episiotomy; and (3) mode of childbirth. A logistic regression analysis, adjusted for significant covariates, was conducted. Findings: A significant association was found between perinatal distress at 16 weeks gestation and use of epidural as single pain management. Overall, distressed women were 2.6 times more likely than non-distressed women to use epidural as a single pain management. They were also less likely to go through childbirth without use of any pain management method. Women who were dissatisfied in their relationship were significantly more likely to undergo induction of childbirth, an episiotomy and/or a vacuum extraction than those who were satisfied in their relationship, regardless if they were distressed or not. No association was found between social support and the outcome variables. Key conclusions: Women with perinatal distress were more likely to use an epidural than non-distressed women. The use of an epidural might help them manage pain and uncertainties related to childbirth. Women who were dissatisfied in their partner relationship may be more likely to undergo induction of childbirth, episiotomy and/or vacuum extraction. Implication for practice: Midwives need to acknowledge the possible association of distress and use of an epidural during childbirth and screen for distress early in pregnancy. It is important to offer counselling and help during pregnancy for expectant parents who are distressed or dissatisfied in their relationship. (C) 2018 Elsevier Ltd. All rights reserved.
|
|
| 3. |
- Jonsdottir, Sigridur Sia, et al.
(author)
-
Partner relationship, social support and perinatal distress among pregnant Icelandic women
- 2017
-
In: Women and Birth. - : Elsevier. - 1871-5192 .- 1878-1799. ; 30:1, s. e46-e55
-
Journal article (peer-reviewed)abstract
- BACKGROUND: It is inferred that perinatal distress has adverse effects on the prospective mother and the health of the foetus/infant. More knowledge is needed to identify which symptoms of perinatal distress should be assessed during pregnancy and to shed light on the impact of women's satisfaction with their partner relationship on perinatal distress.AIM: The current study aimed to generate knowledge about the association of the partner relationship and social support when women are dealing with perinatal distress expressed by symptoms of depression, anxiety and stress.METHODS: A structured interview was conducted with 562 Icelandic women who were screened three times during pregnancy with the Edinburgh Depression Scale and the Depression, Anxiety, Stress Scale. Of these, 360 had symptoms of distress and 202 belonged to a non-distress group. The women answered the Multidimensional Scale of Perceived Social Support and the Dyadic Adjustment Scale. The study had a multicentre prospective design allowing for exploration of association with perinatal distress.FINDINGS: Women who were dissatisfied in their partner relationship were four times more likely to experience perinatal distress. Women with perinatal distress scored highest on the DASS Stress Subscale and the second highest scores were found on the Anxiety Subscale.CONCLUSION: Satisfaction in partner relationship is related to perinatal distress and needs to be assessed when health care professionals take care of distressed pregnant women, her partner and her family. Assessment of stress and anxiety should be included in the evaluation of perinatal distress, along with symptoms of depression.
|
|
| 4. |
- Jonsdottir, Sigridur Sia, et al.
(author)
-
Pregnancy complications, sick leave and service needs of women who experience perinatal distress, weak social support and dissatisfaction in their partner relationships
- 2020
-
In: Scandinavian Journal of Caring Sciences. - : John Wiley & Sons. - 0283-9318 .- 1471-6712. ; 34:1, s. 167-180
-
Journal article (peer-reviewed)abstract
- Introduction Although perinatal distress is acknowledged as a burdening condition for pregnant women, its effects on pregnancy are not well known. This study was conducted to increase knowledge regarding the effects of distress on pregnancy-related problems. The study also assessed women's need for sick leave and increased prenatal care due to distress, and the effects of weak social support and dissatisfaction with their partner relationships. Methods In total, 2523 women were screened for perinatal distress three times during pregnancy in this quantitative cohort study. Structured psychiatric interviews were conducted following the screening, with 562 of the participants. Data from participants' pregnancy records were also analysed. The study was conducted in primary healthcare centres in Iceland after receiving approval from the Icelandic National Bioethical Committee. The main outcome measures were pregnancy problems, sick leave issued and prenatal service needs. Results Data from 503 women were analysed. The perinatal distress group (PDG) was significantly more likely than was the nondistressed group (NDG) to experience fatigue, vomiting and pelvic pain after controlling for background variables. Distressed women who reported weak family support experienced symptoms of nausea and heartburn. The PDG needed more frequent prenatal care than did the NDG and was issued sick leave for up to 42 days longer. Dissatisfaction in the partner relationship and with the division of household tasks and childcare was strongly associated with distress, the development of complications and the need for sick leave. Discussion Identification of perinatal distress by midwives and other healthcare professionals is important, since distress may be linked to women's complaints of fatigue, vomiting, pelvic pain and need for prolonged sick leave, and additional prenatal care services will be needed. Perceived dissatisfaction in the partner relationship and with the division of household tasks should also form part of clinical practice and assistance provided.
|
|
| 5. |
- Magnusson, Charlotte, et al.
(author)
-
Interactive Balance and Walking Training for Stroke Survivors
- 2019
-
In: 13th EAI International Conference on Pervasive Computing Technologies for Healthcare - Demos and Posters. - : EAI. - 9781631901843
-
Conference paper (peer-reviewed)abstract
- In the ActivAbles and STARR projects we have developed interactive training tools for stroke survivors. A prototype system includes an interactive balance foam pad, feedback lamps and a step counting game app which all connect to a central server. The feedback is designed to be inclusive - designs are multimodal, and the setup is flexible and can easily be adapted. We describe the system and report results from a feasibility study with 10 stroke survivors who used the system for a longer period in the home.
|
|
| 6. |
- Oddsson, Asmundur, et al.
(author)
-
Deficit of homozygosity among 1.52 million individuals and genetic causes of recessive lethality
- 2023
-
In: Nature Communications. - : Springer Nature. - 2041-1723. ; 14:1
-
Journal article (peer-reviewed)abstract
- Genotypes causing pregnancy loss and perinatal mortality are depleted among living individuals and are therefore difficult to find. To explore genetic causes of recessive lethality, we searched for sequence variants with deficit of homozygosity among 1.52 million individuals from six European populations. In this study, we identified 25 genes harboring protein-altering sequence variants with a strong deficit of homozygosity (10% or less of predicted homozygotes). Sequence variants in 12 of the genes cause Mendelian disease under a recessive mode of inheritance, two under a dominant mode, but variants in the remaining 11 have not been reported to cause disease. Sequence variants with a strong deficit of homozygosity are over-represented among genes essential for growth of human cell lines and genes orthologous to mouse genes known to affect viability. The function of these genes gives insight into the genetics of intrauterine lethality. We also identified 1077 genes with homozygous predicted loss-of-function genotypes not previously described, bringing the total set of genes completely knocked out in humans to 4785.
|
|
| 7. |
- Olafsdottir, Steinunn A., et al.
(author)
-
Developing ActivABLES for community-dwelling stroke survivors using the Medical Research Council framework for complex interventions
- 2020
-
In: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 20
-
Journal article (peer-reviewed)abstract
- Background: Novel technical solutions are called for to promote home-based exercise among community-dwelling stroke survivors supported by their caregivers. Lack of resources and knowledge about how to accomplish it, has been demonstrated. The objective of this study is to describe in detail the development of ActivABLES, a technical intervention to promote home-based exercise and physical activity engagement of community-dwelling stroke survivors with support from their caregivers. Methods: The technical development process of ActivABLES was guided by the Medical Research Council (MRC) framework for development and evaluation of complex interventions as well as by principles of human-centred design and co-design. The main steps included: (1) Synthesis of evidence supporting the inclusion of balance exercises, mobility and walking exercises and exercises for the upper arm; (2) Implementation of initial user studies with qualitative data collection from individual interviews with stroke survivors, and focus group interviews with caregivers and health professionals; (3) Preliminary testing of eight prototypes with seven stroke survivors and their caregivers. Results: After the preliminary testing of eight prototypes, four prototypes were not further developed whereas four prototypes were modified further. In addition, two new prototypes were developed, leaving six prototypes for further modification: 1) ActivFOAM for balance exercises, 2) WalkingSTARR to facilitate walking, 3) ActivBALL for hand exercises, 4) ActivSTICKS for upper arm exercises, and 5) ActivLAMP and 6) ActivTREE which both give visual feedback on progress of daily exercise and physical activities. ActivFOAM, ActivBALL and ActivSTICKS are all connected to a tablet where exercise instructions are given. All the exercise prototypes can be connected to ActivLAMP and ActivTREE to give feedback on how much exercise the user has done. Settings can be individualised and recommended daily time and/or repetition can easily be changed as the user progresses to higher activity levels. Conclusions: The development process of ActivABLES was guided by the principles of human-centred design, with iterative testing of future users, and by the MRC framework of complex intervention, with a repeated process of development and testing. This process resulted in six prototypes which are available for feasibility testing among a small group of community-dwelling stroke survivors.
|
|
| 8. |
- Olafsdottir, Steinunn A., et al.
(author)
-
Feasibility of ActivABLES to promote home-based exercise and physical activity of community-dwelling stroke survivors with support from caregivers : A mixed methods study
- 2020
-
In: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 20:1
-
Journal article (peer-reviewed)abstract
- BACKGROUND: Technical applications can promote home-based exercise and physical activity of community-dwelling stroke survivors. Caregivers are often able and willing to assist with home-based exercise and physical activity but lack the knowledge and resources to do so. ActivABLES was established to promote home-based exercise and physical activity among community-dwelling stroke survivors, with support from their caregivers. The aim of our study is to investigate the feasibility of ActivABLES in terms of acceptability, demand, implementation and practicality. METHODS: A convergent design of mixed methods research in which quantitative results were combined with personal experiences of a four-week use of ActivABLES by community-dwelling stroke survivors with support from their caregivers. Data collection before, during and after the four-week period included the Berg Balance Scale (BBS), Activities-Specific Balance Confidence Scale (ABC), Timed-Up-and-Go (TUG) and Five Times Sit to Stand Test (5xSST) and data from motion detectors. Semi-structured interviews were conducted with stroke survivors and caregivers after the four-week period. Descriptive statistics were used for quantitative data. Qualitative data was analysed with direct content analysis. Themes were identified related to the domains of feasibility: acceptability, demand, implementation and practicality. Data was integrated by examining any (dis)congruence in the quantitative and qualitative findings. RESULTS: Ten stroke survivors aged 55-79 years participated with their informal caregivers. Functional improvements were shown in BBS (+ 2.5), ABC (+ 0.9), TUG (- 4.2) and 5xSST (- 2.7). More physical activity was detected with motion detectors (stand up/sit down + 2, number of steps + 227, standing + 0.3 h, hours sitting/lying - 0.3 h). The qualitative interviews identified themes for each feasibility domain: (i) acceptability: appreciation, functional improvements, self-initiated activities and expressed potential for future stroke survivors; (2) demand: reported use, interest in further use and need for follow-up; (3) implementation: importance of feedback, variety of exercises and progression of exercises and (4) practicality: need for support and technical problems. The quantitative and qualitative findings converged well with each other and supported the feasibility of ActivABLES. CONCLUSIONS: ActivABLES is feasible and can be a good asset for stroke survivors with slight or moderate disability to use in their homes. Further studies are needed with larger samples.
|
|
| 9. |
- Stenbäck, Anders, et al.
(author)
-
Proprietary non-animal stabilized hyaluronic acid/dextranomer gel (NASHA/Dx) for endoscopic treatment of grade IV vesicoureteral reflux : Longterm observational study
- 2020
-
In: Journal of Pediatric Urology. - : ELSEVIER SCI LTD. - 1477-5131 .- 1873-4898. ; 16:3
-
Journal article (peer-reviewed)abstract
- Background Since 1993, children aged >1 year with persistent grade III-V vesicoureteral reflux (VUR) and febrile urinary tract infections (UTIs) attending Uppsala University Hospital have undergone endoscopic injection with proprietary non-animal stabilized hyaluronic acid/dextranomer gel (NASHA/Dx; Deflux (R)). Objective Investigate long-term incidence of UTI, bladder dysfunction, ureteral reimplantation and overall clinical findings following endoscopic injection of NASHA/Dx. Study design Children with grade IV VUR diagnosed by voiding cystourethrogram (VCUG) and dilating VUR persisting for >1 year were included in this study. 15-25 years after endoscopic treatment, patients' hospital charts were studied. Information on bladder function and UTIs was obtained via questionnaire, 8-18 years after endoscopic treatment. Results 185 patients (69 boys, 116 girls) were included in the study; 237 grade IV VUR ureters were treated. All study patients were diagnosed with VUR after a febrile UTI (i.e. pyelonephritis). According to the last voiding cystourethrogram, 69% of ureters showed a positive response (VUR grade 0-I), 7% had VUR grade II and 23% had VUR grade >= III. 46 patients (25%) required ureteral reimplantation during follow-up. Among patients treated during the second 5-year period compared with the first (1998-2003 versus 1993-1998), there was a significant decrease in the rate of ureteral reimplantation (31% vs 16%; p = 0.0365). This difference may be attributable to developments over time in the injection technique. UTIs occurred in 30 patients (21% of the evaluable population): 28 females and 2 males. Febrile UTIs were reported in 14 patients (10%), all females. Forty-nine patients (34%) had bladder problems (e.g. underactivity, overactivity, incontinence). Five patients underwent ureteral reimplantation 'late', 6-10 years after the last endoscopic injection. In one male patient, calcification around the NASHA/Dx implantation site was observed during routine examination 2 years after endoscopic treatment; no intervention was required. No safety issues were observed in the remaining 97% of the study population. Conclusions This study represents the longest published followu-p of Grade IV VUR patients undergoing endoscopic treatment. Three-quarters of patients did not need ureteral reimplantation. Optimal injection technique and higher injection volume were associated with a reduced ureteral reimplantation rate. Treatment with NASHA/Dx was durable and well tolerated: long-term risks of UTI, bladder dysfunction and recurrent VUR were low. [GRAPHICS] .
|
|
