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- Bratt, Ewa-Lena, 1970, et al.
(författare)
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New kid on the block? Community nurses' experiences of caring for sick children at home
- 2014
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Ingår i: American Academy of Nursing 2014 Transforming Health, Driving Policy Conference held from October 16 - 18 2014. Washington, USA.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Aim: To investigate the experiences of community nurses regarding caring for sick children at home, since this is a growing population of patients in community care, and most community nurses do not have an extensive experience in caring for sick children. Methods: Using a qualitative, descriptive design, in-depth interviews were conducted with twelve nurses working in community healthcare in Sweden. Qualitative content analysis was used. Results: “To feel confident in order to create confidence” was key in nurses’ experiences. Two main themes emerged: ”to build a trusting relationship with the family" and "to feel confident in the role as caregivers". Nurses aimed at creating a trusting nursing relationship and working closely with parents. The feeling of confidence in their role as caregivers depended of the support that nurses received and the knowledge that they have. Six subthemes emerged: “the importance of adequate knowledge”; “to handle the emotional reactions”; “need for support and guidance”; “collaborating with family”; “thoroughly planned visits”; and “communicating with the whole family”. Conclusion: Many community nurses felt insecure to care for children at home. However, they experienced this as manageable when receiving peer support and when there is a distinct collaboration with the pediatric clinic/hospital. A need for guidance and education was expressed. Policy implications: The ongoing shift from hospital to home urges pediatric clinics/hospitals and community healthcare to develop formal policies of transmural collaboration to train and support home nurses for delivering adequate care to sick children and their families at home, and safeguard good outcomes.
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- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Optimal transition - nurses view.
- 2014
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Ingår i: 48th Annual meeting of the European Association of Pediatric and Congenital Cardiology (AEPC). 22 maj 2014. Helsingfors, Finland..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)
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| 9. |
- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Parents' experiences of having an asymptomatic child diagnosed with hypertrophic cardiomyopathy through family screening.
- 2011
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Ingår i: Cardiology in the young. - 1467-1107 .- 1047-9511. ; 21:1, s. 8-14
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Tidskriftsartikel (refereegranskat)abstract
- Hypertrophic cardiomyopathy is hereditary and the commonest medical cause of sudden death in childhood and adolescence, which is the reason for recommending screening in children with an affected parent. A diagnosis of hypertrophic cardiomyopathy implies lifestyle modifications, restrictions that may bring profound changes to the affected individual and impacts on the whole family.
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- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Quality of life in asymptomatic children and adolescents before and after diagnosis of hypertrophic cardiomyopathy through family screening.
- 2013
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 22:1-2, s. 211-221
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectives. The aim of this study was to measure quality of life (QoL) in asymptomatic children with hypertrophic cardiomyopathy (HCM) before and after diagnosis. Background. Hypertrophic cardiomyopathy is a disease with a 50% risk of inheritance. Children at risk for serious complications can be diagnosed early with family screening, but before embarking on a screening programme, it is important to evaluate the psychosocial consequences of such screening. Design. Prospective case-control study. Methods. Quality of life was measured using a questionnaire by Lindström incorporating both objective and subjective aspects of the three spheres: external, interpersonal and personal, before and two years after diagnosis. The study group consisted of 13 children/adolescents (11 boys), median age 11 (5-18) years, with HCM diagnosed at family screening. All filled out a questionnaire before diagnosis and at follow-up. 41 healthy children/adolescents (22 boys), median age 11 (2-19) years with a first-degree relative diagnosed with HCM served as controls; 15/41 also completed follow-up data. Results. The total QoL score for all spheres was similar in both groups at baseline and follow-up. In the interpersonal sphere, it was more common that children diagnosed with HCM had no siblings both at baseline (p = 0·002) and follow-up (p = 0·005). The family situation, social support and life events were unchanged from baseline to follow-up. Children with HCM had significantly more psychosomatic symptoms compared with controls at baseline (p < 0·05) but not at follow-up. Self-esteem, peer acceptance and satisfaction with school were unchanged and similar between groups. Conclusion. Family screening for HCM does not appear to negatively influence QoL. Relevance to clinical practice. This study indicates that family screening of asymptomatic children and adolescents had no significant detrimental effects on QoL. This suggests that the benefits of finding symptomatic individuals at risk for serious complications outweigh concerns about screening asymptomatic individuals.
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- Bratt, Ewa-Lena, 1970
(författare)
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Screening for Hypertrophic Cardiomyopathy in Asymptomatic Children and Adolescents. Psychosocial consequences and impact on quality of life and physical activity.
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The aim of this thesis was to describe the consequences of being diagnosed with hypertrophic cardiomyopathy (HCM) while being asymptomatic, taking into consideration psychosocial effects and medical aspects of diagnosis and treatment. Methods: Quality of life (QoL) was measured according to Lindström before the diagnosis, and after two years, comparing with healthy controls. Psychosocial consequences of the diagnosis were explored in interviews with children and their parents and analysed using content analysis. Exercise performance was measured at baseline and after one year in patients randomized to no pharmacological treatment or selective or non-selective high-dose beta-blocker therapy. Results: The total QoL score was similar in both groups at baseline and at follow-up. Parents described an immediate reaction of shock, grief and feelings of injustice but were also grateful that their child had been diagnosed and was still asymptomatic. The diagnosis resulted in a change in life-style for most families due mainly to restrictions of sports activities. Parents had difficulties to adapt to the new life but after re-adjustment they regained hope and confidence. The children described an involuntary change of their daily life with limitations and restrictions because of life-style recommendations and this also affected their social context. However, after a reorientation process they felt hope and had faith in the future. There was no significant difference in exercise capacity between the groups at baseline, or after one year of observation versus beta-blocker treatment. Conclusions: Family screening for HCM did not appear to negatively influence QoL. Children diagnosed with HCM through family screening went through an involuntary change of daily life, mainly ascribed to life-style-modifications. They strived to create a life where they could feel secure and have faith in the future, and with the support of parents and health care professionals they achieved a new state of normality. Neither selective nor non-selective beta-blockade caused significant reductions in exercise capacity in patients with HCM above that induced by life-style changes.
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| 16. |
- Bratt, Ewa-Lena, 1970, et al.
(författare)
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The experience of being diagnosed with hypertrophic cardiomyopathy through family screening in childhood and adolescence.
- 2012
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Ingår i: Cardiology in the young. - 1467-1107 .- 1047-9511. ; 22:5, s. 528-535
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Tidskriftsartikel (refereegranskat)abstract
- AimTo describe the experiences of children and adolescents being screened positive for hypertrophic cardiomyopathy and how this impacts their daily life. BACKGROUND: Hypertrophic cardiomyopathy is a hereditary disease and the most common medical cause of sudden death in childhood and adolescence. This is the reason for recommending screening in children with an affected first-degree relative. A diagnosis of hypertrophic cardiomyopathy implies lifestyle modifications, restrictions that may bring profound changes to the daily life of the affected individual. DESIGN: This is a descriptive qualitative interview study. METHODS: We interviewed 13 asymptomatic children or adolescents diagnosed with hypertrophic cardiomyopathy through family screening 12-24 months after the diagnosis. Analysis was conducted with qualitative content analysis. RESULTS: Children described an involuntary change, which affected their daily life with limitations and restrictions in life, both in the individual and social context. Lifestyle recommendations had the most severe impact on daily life and affected their social context. They tried to navigate in a world with new references, and after reorientation they felt hope and had faith in the future. CONCLUSIONS: Children diagnosed with hypertrophic cardiomyopathy through family screening went through an involuntary change resulting in limitations and restrictions in life. This study indicates that there is a need for support and that healthcare professionals have to consider the specific needs in these families. Our findings thus give guidance in how best to improve support to the patients and their family. Diagnosis in asymptomatic children should be accompanied by ideally multi-professional follow-up, focusing not only on medical issues.
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| 19. |
- Bratt, Ewa-Lena, 1970
(författare)
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Transition i Barnsjukvård
- 2011
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Ingår i: Barnbladet. - 0349-1994 .- 0349-1994. ; 6:36, s. 26-7
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
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| 20. |
- Johansson, Anette, et al.
(författare)
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Patient education in adolescents with congenital heart disease – does a computer-based program developed for adults work?
- 2014
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Ingår i: XXXXIV Nordic Paediatric Cardiology Meeting in Umeå. 17-19 september 2014.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Abstract Today about 90% of children with congenital heart disease (CHD) survive to adulthood and many need life-long medical follow-up. Structured transition programmes have the potential to improve continuation of cardiac follow-up and aim to enhance adolescents' and their families' knowledge of the medical condition; to augment adherence to medical regimens; to improve overall quality of life (QoL) and psychosocial status. Parents are initially responsible for their child´s health but should gradually hand over responsibility to the youth. Knowledge of the disease is an important and crucial part in taking responsibility for their health. The aim of this study was to describe how adolescents with CHD experience a computer-based patient education developed for an adult population with CHD. Methods: Individual structured interviews of adolescents with CHD. The text transcribed verbatim was analysed with qualitative content analysis. Results: The text analysis resulted in an overall theme “Increased overall awareness and knowledge in need of some adjustments” with three subcategories: “The program was easy to use but requires some adjustment”, “Gave a greater knowledge and understanding about heart failure, treatment and lifestyle advice” and “an increased sense of connectedness“ Conclusion: The computer program needs to be age adapted but was considered by most of the interviewed young patients as a good method to learn more about ones own heart condition. Some of the modules need to be reformulated to be simpler and more suitable for young people, but most felt that the program was easy to use.
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| 21. |
- Moons, Philip, 1968, et al.
(författare)
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How do we improve patient knowledge
- 2014
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Ingår i: Annual Program on Congenital Heart Disease in the Adult: An International Symposium, Cincinnati summit June 10-13, 2014.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)
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| 24. |
- Östman-Smith, Ingegerd, 1947, et al.
(författare)
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Electrocardiographic amplitudes : a new risk factor for sudden death in hypertrophic cardiomyopathy.
- 2010
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Ingår i: European Heart Journal. - : Oxford University Press. - 0195-668X .- 1522-9645. ; 31:4, s. 439-449
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Tidskriftsartikel (refereegranskat)abstract
- AIMS: Assessment of ECG-features as predictors of sudden death in adults with hypertrophic cardiomyopathy (HCM).METHODS AND RESULTS: ECG-amplitude sums were measured in 44 normals, 34 athletes, a hospital-cohort of 87 HCM-patients, and 29 HCM-patients with sudden death or cardiac arrest (HCM-CA). HCM-patients with sudden death or cardiac arrest had substantially higher ECG-amplitudes than the HCM-cohort for limb-lead and 12-lead QRS-amplitude sums, and amplitude-duration products (P = 0.00003-P = 0.000002). Separation of HCM-CA from the HCM-cohort is obtained by limb-lead QRS-amplitude sum >or=7.7 mV (odds ratio 18.8, sensitivity 87%, negative predictive value (NPV) 94%, P < 0.0001), 12-lead amplitude-duration product >or=2.2 mV s (odds ratio 31.0, sensitivity 92%, NPV 97%, P < 0.0001), and limb-lead amplitude-duration product >or=0.70 mV s (odds ratio 31.5, sensitivity 93%, NPV 96%, P < 0.0001). Sensitivity in HCM-patients <40 years is 90, 100, and 100% for those ECG-variables, respectively. Qualitative analysis showed correlation with cardiac arrest for pathological T-wave-inversion (P = 0.0003), ST-depression (P = 0.0010), and dominant S-wave in V(4) (P = 0.0048). A risk score is proposed; a score >or=6 gives a sensitivity of 85% but a higher positive predictive value than above measures. Optimal separation between HCM-CA <40 years and athletes is obtained by a risk score >or=6 (odds ratio 345, sensitivity 85%, specificity 100%, P < 0.0001).CONCLUSION: Twelve-lead ECG is a powerful instrument for risk-stratification in HCM.
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