16 research outputs found
Societal Norms and Conditions and Their Influence on Daily Life in ChildrenWith Type 1 Diabetes in the West Bank in Palestine
Purpose: To explore the experiences of daily life in children with type 1 diabetes (T1D) and their parents living in
the West Bank in Palestine.
Design andMethods: A qualitative study using thematic interviewswas performed with 10 childrenwith T1D and
their parents (n = 10). Content analysis was performed with the assistance of NVIVO 10.
Results: The overall themewas facing the social reality of diabetes. Thiswas underpinned by two themes: stigmatization
and social constraints. Facing the social reality of diabetes described children and their parents' everyday
life attempts to place themselves within the context of the disease and social context. Children and their parents
described how stigmatization and social constraints impacted their daily life as a result of fear of disclosing the
disease, which could affect their social status.
Conclusion: These findings highlighted how daily life in children with T1D and their parents was highly affected
by cultural impacts, especially as stigma related to the illness affected social interactions of female and male children/
adolescents. Lack of knowledge andmisunderstandings about T1D in society lead to negative consequences
like poorer management of diabetes, and this becomes mediated by gender.
Practical Implications: The findings suggest health care providers need to be aware of the cultural and social impact
of T1D on children's and parents' daily life in order to meet their needs and challenges by providing appropriate
interventions, strategies and support.This research did not received any specific grant from funding
agencies in the public, commercial, or not-for-profit sectors
Struggling and Overcoming Daily Life Barriers Among Children With Congenital Heart Disease and Their Parents in the West Bank, Palestine
Advances in early diagnosis, treatment, and postoperative care have resulted
in increased survival rates among children with congenital heart disease
(CHD). Research focus has shifted from survival to long-term follow-up,
well-being, daily life experiences, and psychosocial consequences. This study
explored the everyday experiences of children with CHD and of their
parents living in the Palestinian West Bank. Interviews with nine children
aged 8 to 18 years with CHD and nine parents were analyzed using content analysis. The overall theme that emerged was facing and managing challenges,
consisting of four themes: sociocultural burden and finding comfort, physical
and external limitations, self-perception and concerns about not standing
out, and limitations in access to health care due to the political situation. To
provide optimum care for children with CHD and their parents, health care
providers and policy makers must understand the negative consequences
associated with sociocultural conditions and beliefs about chronic illness.Acknowledgments
We would like to thank all of the participants of this research. It was their willingness
to share their experiences and insights that made this study possible.
Funding
The authors received no financial support for the research, authorship, and/or publication
of this article
Self-Perceived Health Status and Sense of Coherence in Children With Type 1 Diabetes in the West Bank, Palestine
Introduction: Self-perceived health status and sense of coherence (SOC) are essential constructs for capturing health
outcomes in children with type 1 diabetes (T1D). This study measured self-perceived health status and SOC in children with
T1D and compared them with a healthy reference group in West Bank, Palestine. Methodology: One hundred children
with T1D aged 8 to 18 years and 300 healthy children completed PedsQL 4.0 Generic Core Scales and SOC-13 in a crosssectional
descriptive study. Results: All children reported acceptable self-perceived health status and low degree of SOC. In
the diabetes group, high degree of SOC was associated with better self-perceived health status and more optimal metabolic
control. Males in the diabetes group reported higher self-perceived health status than females. Discussion: The unstable
political situation in Palestine may threaten SOC in children in general. Health professionals can monitor self-perceived health
status and SOC to evaluate interventions aiming to improve glycemic control.We gratefully thank all the children for their participation and the
nurses who assisted in data collection
Patients’ expectations of coming home with Very Early Supported Discharge and home rehabilitation after stroke - an interview study
Screening for Hypertrophic Cardiomyopathy in Asymptomatic Children and Adolescents. Psychosocial consequences and impact on quality of life and physical activity.
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
Well-being among survivors of out-of-hospital cardiac arrest : a cross-sectional retrospective study in Sweden.
OBJECTIVES: The psychological outcome of out-of-hospital cardiac arrest (OHCA) has been studied more extensively in recent years. Still, not much is known about the well-being among OHCA survivors. In this retrospective cross-sectional study, we aim to investigate post-OHCA well-being among patients with a good neurological outcome, 3 months after the cardiac event. To assess well-being, we analyse the frequency of anxiety, depression, post-traumatic stress disorder (PTSD) and health within this group. Further, we aim to evaluate the importance of five prognostic factors for post-OHCA well-being. METHODS: Data collection took place between 2008 and 2012, and every OHCA survivor within one region of Sweden, with a cerebral performance category (CPC) score of ≤2 at discharge, was asked to participate. Survivors were identified through the Swedish Cardiopulmonary Resuscitation Registry, and postal questionnaires were sent out 3 months after the OHCA. The survey included Hospital Anxiety and Depression scale (HADS), PTSD Checklist Civilian version (PCL-C) and European Quality of Life 5 Dimensions 3 level (EQ-5D-3L). RESULTS: Of 298 survivors, 150 were eligible for this study and 94 responded. The mean time from OHCA to follow-up was 88 days. There was no significant difference between respondents and non-respondents in terms of sex, age, cardiac arrest circumstances or in-hospital interventions. 48 participants reported reduced well-being, and young age was the only factor significantly correlated to this outcome (p=0.02). Women reported significantly higher scores in HADS (p=0.001) and PCL-C (p<0.001). Women also reported significantly lower EQ-5D index values (p=0.002) and EQ-visual analogue scale scores (p=0.002) compared with men. CONCLUSION: Reduced well-being is experienced by half of OHCA survivors with a CPC score ≤2, and young age is negatively correlated to this outcome. The frequency of anxiety and PTSD is higher among women, who also report worse health
Improved outcome in Sweden after out-of-hospital cardiac arrest and possible association with improvements in every link in the chain of survival
Aims: To describe out-of-hospital cardiac arrest (OHCA) in Sweden from a long-term perspective in terms of changes in outcome and circumstances at resuscitation. Methods and results: All cases of OHCA (n = 59 926) reported to the Swedish Cardiac Arrest Register from 1992 to 2011 were included. The number of cases reported (n/100 000 person-years) increased from 27 (1992) to 52 (2011). Crew-witnessed cases, cardiopulmonary resuscitation prior to the arrival of the emergency medical service (EMS), and EMS response time increased (P < 0.0001). There was a decrease in the delay from collapse to calling for the EMS in all patients and from collapse to defibrillation among patients found in ventricular fibrillation (P< 0.0001). The proportion of patients found in ventricular fibrillation decreased from 35 to 25% (P < 0.0001). Thirty-day survival increased from 4.8 (1992) to 10.7% (2011) (P < 0.0001), particularly among patients found in a shockable rhythm and patients with return of spontaneous circulation (ROSC) at hospital admission. Among patients hospitalized with ROSC in 2008–2011, 41% underwent therapeutic hypothermia and 28% underwent percutaneous coronary intervention. Among 30-day survivors in 2008–2011, 94% had a cerebral performance category score of 1 or 2 at discharge from hospital and the results were even better if patients were found in a shockable rhythm. Conclusion: From a long-term perspective, 30-day survival after OHCA in Sweden more than doubled. The increase in survival was most marked among patients found in a shockable rhythm and those hospitalized with ROSC. There were improvements in all four links in the chain of survival, which might explain the improved outcome
The experience of being diagnosed with hypertrophic cardiomyopathy through family screening in childhood and adolescence
Multimodality imaging using SPECT/CT and MRI and ligand functionalized 99m
BACKGROUND:
In the present study, we used multimodal imaging to investigate biodistribution in rats after intravenous administration of a new 99mTc-labeled delivery system consisting of polymer-shelled microbubbles (MBs) functionalized with diethylenetriaminepentaacetic acid (DTPA), thiolated poly(methacrylic acid) (PMAA), chitosan, 1,4,7-triacyclononane-1,4,7-triacetic acid (NOTA), NOTA-super paramagnetic iron oxide nanoparticles (SPION), or DTPA-SPION.
METHODS:
Examinations utilizing planar dynamic scintigraphy and hybrid imaging were performed using a commercially available single-photon emission computed tomography (SPECT)/computed tomography (CT) system. For SPION containing MBs, the biodistribution pattern of 99mTc-labeled NOTA-SPION and DTPA-SPION MBs was investigated and co-registered using fusion SPECT/CT and magnetic resonance imaging (MRI). Moreover, to evaluate the biodistribution, organs were removed and radioactivity was measured and calculated as percentage of injected dose.
RESULTS:
SPECT/CT and MRI showed that the distribution of 99mTc-labeled ligand-functionalized MBs varied with the type of ligand as well as with the presence of SPION. The highest uptake was observed in the lungs 1 h post injection of 99mTc-labeled DTPA and chitosan MBs, while a similar distribution to the lungs and the liver was seen after the administration of PMAA MBs. The highest counts of 99mTc-labeled NOTA-SPION and DTPA-SPION MBs were observed in the lungs, liver, and kidneys 1 h post injection. The highest counts were observed in the liver, spleen, and kidneys as confirmed by MRI 24 h post injection. Furthermore, the results obtained from organ measurements were in good agreement with those obtained from SPECT/CT.
CONCLUSIONS:
In conclusion, microbubbles functionalized by different ligands can be labeled with radiotracers and utilized for SPECT/CT imaging, while the incorporation of SPION in MB shells enables imaging using MR. Our investigation revealed that biodistribution may be modified using different ligands. Furthermore, using a single contrast agent with fusion SPECT/CT/MR multimodal imaging enables visualization of functional and anatomical information in one image, thus improving the diagnostic benefit for patients