Search

Purpose: To assess self-perceived health and sense of coherence (SOC) in adolescents with spina bifida (SB) in the West Bank, Palestine, compared to a healthy reference group. Further, to assess the association between impairment levels in the adolescents with SB and their self-perceived health and SOC., Methods: Fifty adolescents with SB and 150 healthy adolescents completed measures of self-perceived health - the Pediatric Quality of Life Inventory (PedsQL TM 4.0) - and SOC. The rehabilitation center nurses identified the physical impairments of the adolescents with SB from their medical records, and classified them by impairment severity., Results: Adolescents with SB reported lower self-perceived health (PedsQL median 55, IQR 42-67), than the reference group (median 85, IQR 74-90), p  < 0.001, and lower SOC (median 47, IQR 44-50) than the reference group (median 55, IQR 44-61), p  < 0.001. Impairment level was inversely associated with both self-perceived health and SOC., Conclusions: The low self-perceived health and SOC among adolescents with SB in Palestine indicate the need for collaboration between policy makers and providers to improve these adolescents' physical and social environment and to promote the rehabilitation services provided for them.Implications for rehabilitationThe low self-perceived health and SOC among adolescents with SB in Palestine highlight the need to develop appropriate interventions to promote their health, independency, and self-care management.Collaboration of the caregivers and health care providers is required to develop, implement, and evaluate intervention programs that might promote coping abilities of the adolescents with SB.A multidisciplinary approach is needed to set goals that have a meaningful impact on social, emotional, behavioral, and educational conditions of the adolescents with SB and in different settings, for example, home, school, and community.The environment in Palestine presents barriers to the social engagement of adolescents with SB, and new ways are needed to enhance their participation in the society to promote their self-concept and wellbeing.

Background: Children born with spina bifida endure constant physical disability, which is challenging for themselves and their families. To date, the impact of spina bifida on the health-related quality of life (HRQOL; eg, physical, psychological, and social wellbeing) of these children has been assessed mainly through parent proxy reports, and self-perceived health among these children is rarely measured. This study aimed to measure self-perceived health in children with spina bifida in the West Bank, to compare this with that in a healthy reference group also from the West Bank, and to assess the potential association between self-perceived health and the level of disability in children with spina bifida., Methods: A cross-sectional study was conducted in the West Bank. The Paediatric Quality of Life Inventory (PedsQL) was administered to a convenience sample of 200 children aged 8-12 years, of whom 50 have spina bifida and 150 are healthy. For the children with spina bifida, their disability was categorised and ranked according to four aspects of impairment (mobility, bowel function, bladder function, and hydrocephaly). Data were analysed with SPSS version 24. Difference in PedsQL scores between the two groups of children was tested with the Mann-Whitney U-test. The Spearman's rank correlation coefficient was used to evaluate the association between the level of physical impairment in children with spina bifida and their self-perceived health. Written informed consent was obtained from the children's parents. The children's verbal assent was also obtained, and their right to withdraw from the study at any time was emphasised., Findings: Children with spina bifida had lower overall PedsQL scores (mean 45·5, SD 14.5) than those reported by the reference group of healthy children (mean 80·0, SD 12·8). For children with spina bifida, social functioning had the lowest mean score (30·5, SD 20·8), followed by physical functioning (37·5, SD 16.6), emotional functioning (56·0, SD 17·2), and school functioning (62·6, SD 17.8), whereas the range for all of the PedsQL scores in the reference group was 71·7-84·5. The results demonstrate significant inverse associations between self-perceived health (overall PedsQL score) in children with spina bifida and both the level of mobility impairment (r s =-0·65, p<0·0001) and the presence of hydrocephalus (r s =-0·53, p<0·0001). A weak inverse association was found between self-perceived health and both bladder and bowel dysfunction. For both groups, no associations were found between demographic characteristics (age, gender, type of settlement of residence [city, village, camp]) and self-perceived health., Interpretation: The findings provide insights into the importance of social support and rehabilitation services for children with spina bifida in the occupied Palestinian territory. In particular, community awareness, and education of health care providers and family members, may be important., Funding: None., (Copyright © 2021 Elsevier Ltd. All rights reserved.)

Background: The number of elderly persons with cardiovascular disease is increasing. In Sweden, the incidence of acute myocardial infarction is the highest among individuals aged 85 years and over. However, there is still little evidence about whether this population benefits from established treatments. Furthermore, the values and preferences of octogenarians (age ⩾80 years), as well as how they could be involved in treatment decisions, have been largely overlooked in research. Overall, increased knowledge about the preferences and expectations of octogenarians is needed to incorporate their treatment expectations into the decision-making process., Aims: This study aimed to describe the treatment choice preferences and post-treatment life expectations of octogenarians with acute coronary syndrome., Methods: A total of 19 patients (eight women, 11 men) aged 80 years and older and diagnosed with non-ST-elevation myocardial infarction or unstable angina were enrolled in this qualitative study. Data were collected between May 2011 and June 2013 through semistructured interviews. The data were analysed using qualitative content analysis., Results: We identified two main categories: Wanting the best and Hope for increased wellbeing. Participant preferences were influenced by their own and others' previous experiences and their confidence in healthcare professionals. With respect to treatment outcomes, the participants hoped to get well, stay active, experience fewer symptoms and regain vitality., Conclusion: The studied octogenarians desired the best treatment option and trusted that their healthcare providers will make appropriate recommendations. These patients expected their treatment to result in increased wellbeing and fewer symptoms.

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 cross-sectional 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.

Aims and Objectives: To describe patients' experience of receiving information about the event after having a cardiac arrest in hospital., Background: In Sweden, approximately 2,600 people per year experience cardiac arrest in hospital. After a cardiac arrest, the patient is entitled to receive information about what has occurred. This information must be provided in a way that does not do the patient more harm than good. In order to provide information to patients in a satisfactory manner for them, knowledge about how patients react to information in this situation is valuable., Design: We used a qualitative approach with interviews and content analysis., Methods: Twenty patients participated in face-to-face interviews analysed by content analysis. Consolidated criteria for reporting qualitative studies were used., Results: The analysis resulted in three categories: Getting the information gradually, Understanding information received and Seeking clarity. The subcategories that emerged were as follows: Indirect information, Short and direct information, Explanatory information, Lack of information, Unsatisfactory information, Hard-to-understand information, Insight, Unanswered questions, Hard-to-formulate questions, Requesting information and Searching independently for knowledge., Conclusions: The patients needed gradual and repeated information during their hospitalisation, and repeated information was continually required after their discharge from hospital. Whether or how the information was given varied. The patients' experience was that they sometimes lacked opportunities for conversation and asking questions, while they also found it hard to formulate questions. Patients who have a cardiac arrest in hospital appear to have similar information needs to patients whose cardiac arrest takes place outside the hospital context., Relevance to Clinical Practice: Information on the patient's cardiac arrest should be given in gradual stages, according to the patient's needs. The information needs to be repeated during the hospital stay and after discharge. Healthcare professional should gain insight into patients' responses and create information that is adapted to the individual., (© 2018 John Wiley & Sons Ltd.)

Aim: To describe young adult patients' experiences of living with a mechanical circulatory support (MSC) as a bridge to heart transplantation and impact of self-efficacy., Design: A qualitative and explorative interview study., Methods: Eight interviews with adult participants were conducted and analysed using the phenomenological hermeneutical method., Results: An overall theme, "Navigating from helplessness to feeling strong in the new reality," and three themes were identified: "Feeling homeless in a changed reality" describes the experience of suddenly falling ill and the loneliness caused by the disease; "Finding my own inner resources" shows that the interviewees found the strength to fight for their lives and began to regain control of their situation; and "Adapting to my new reality" describes the importance of finding strength from others and being able to see MCS as a friend providing respite from the disease. Self-efficacy beliefs play a significant role in the process that the participants went through., Competing Interests: None to declare.

Background: Living with spina bifida in Palestine is a critical issue that might influence various aspects of the individual's life. It is a challenge for children, their families, and health care providers because it requires lifelong treatment and follow-up of care provision. However, little focus has been placed on these children's perceptions about their daily life experiences with spina bifida., Purpose: To illuminate the lived experience of children with spina bifida in the West Bank, Palestine., Methods: A qualitative study was conducted using the phenomenological hermeneutical method to interpret the meaning of being a child with spina bifida in Palestine. Ten children with spina bifida, aged 7-18 years, were interviewed. The two local authors independently analyzed the Arabic transcriptions, whereas the two Swedish authors analyzed the transcriptions after translation to English. Finally, the four authors discussed their analysis and reached agreement about the themes., Results: Studying the children's experience with spina bifida helped us highlight their feelings, needs, and challenges. The findings were formulated into one main theme, Vulnerability and suffering due to social exclusion and stigma, which was grounded in three themes: Experiencing negative self-concept, Experiencing vulnerability, and Obtaining a sense of security. These three themes were in turn derived from subthemes., Conclusion: The Palestinian children in this study faced physical, emotional, and psychosocial challenges, which negatively influenced their health and development. They were vulnerable and stigmatized, and they lived with a negative self-concept. The findings could help health professionals, families, and caregivers to achieve a deeper understanding of what being a child with disabilities entails, and the findings may also serve as a platform for interventions that seek to promote these children's development and to enable them to experience childhood as a meaningful and positive process., (© 2018 John Wiley & Sons Ltd.)

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.

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., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Aim: To describe health status and psychological distress among in-hospital cardiac arrest (IHCA) survivors in relation to gender., Methods: This national register study consists of data from follow-up registration of IHCA survivors 3-6 months post cardiac arrest (CA) in Sweden. A questionnaire was sent to the survivors, including measurements of health status (EQ-5D-5L) and psychological distress (HADS)., Results: Between 2013 and 2015, 594 IHCA survivors were included in the study. The median values for EQ-5D-5L index and EQ VAS among survivors were 0.78 (q1-q3=0.67-0.86) and 70 (q1-q3=50-80) respectively. The values were significantly lower (p<0.001) in women compared to men. In addition, women reported more problems than men in all dimensions of EQ-5D-5L, except self-care. A majority of the respondents reported no problems with anxiety (85.4%) and/or symptoms of depression (87.0%). Women reported significantly more problems with anxiety (p<0.001) and symptoms of depression (p<0.001) compared to men. Gender was significantly associated with poorer health status and more psychological distress. No interaction effects for gender and age were found., Conclusions: Although the majority of survivors reported acceptable health status and no psychological distress, a substantial proportion reported severe problems. Women reported worse health status and more psychological distress compared to men. Therefore, a higher proportion of women may be in need of support. Health care professionals should make efforts to identify health problems among survivors and offer individualised support when needed., (Copyright © 2017 Elsevier B.V. All rights reserved.)

Spina bifida (SB) is the second most common birth defect worldwide. Mothers of children with SB face extraordinary challenges due to the complicated conditions and disability of their children. Little is known about the impact of these challenges on the mothers' well-being, particularly in Middle Eastern culture, where chronic illness and disability are perceived as a stigma, and care of disabled children has traditionally been the responsibility of the mother. The aim of this study was to illuminate mothers' lived experience of having a child with SB in Palestine. Twenty Arab-Muslim mothers living in Palestine were purposefully recruited from several rehabilitation centers in Palestine and were interviewed in 2014. The transcribed interviews were analyzed according to phenomenological hermeneutics. The mothers' experiences were described in the main theme: From feeling broken to looking beyond broken. Four themes were interwoven: living with constant anxiety, living with uncertainty, living with a burden, and living with a difficult life situation. These findings highlight the burden and resilience of the Arab-Muslim Palestinian mothers while striving to maintain the well-being of the whole family as well as facilitating the child's welfare.

Aims and Objectives: To describe patients' experiences of being cared for during invasive monitoring and treatment while awake., Background: Patients with acute heart failure treated in cardiac intensive care are awake during invasive monitoring and treatment and forced to remain in bed rest, sometimes for several days., Design: Exploratory qualitative design., Method: Eight patients were interviewed during invasive treatment. Analyses were conducted according to qualitative content analysis., Results: The participants described their way from a sense of powerlessness and striving to regain control when undergoing invasive monitoring and treatment. Due to their severe illness, they were exposed to the treatment implying a forced loss of empowerment. They surrendered to hospital care. To feel hope and resting from the illness helped the participants to endure the situation. When their condition improved, the need to regain control increased and they wanted to influence their daily care. The participants in present study did not desire to participate in decisions about the medical treatment, but wanted comprehensible information., Conclusion: This study shows how the patients' illness forced them to surrender to the staff's knowledge and treatment. As the patients became more aware, it was important that the healthcare staff did not take over decisions and functions the patients could manage themselves. This helped the patients to endure., Relevance to Clinical Practice: The result of present study could provide guidance for healthcare staff working with the patients cared for using invasive monitoring and treatment while they are awake. If staff has an increased insight of how the patients' condition affects their ability to be involved, they have better understanding of the patients' individual needs. Thus, the staff easier can respond to where the patients are in the process of powerlessness and striving to regain control., (© 2016 John Wiley & Sons Ltd.)

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 and Methods: A qualitative study using thematic interviews was performed with 10 children with T1D and their parents (n=10). Content analysis was performed with the assistance of NVIVO 10., Results: The overall theme was facing the social reality of diabetes. This was 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 and misunderstandings 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., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Aim: Reports on differences between respondents and non-respondents of out-of-hospital cardiac arrest (OHCA) survivors are sparse. This study compares respondents with non-respondents in a follow-up study of a consecutive sample of OHCA survivors and describes the relation between respondents' self-reported morbidity and health., Methods/design: Questionnaires were administered within 12 months after the OHCA. The study population was adult patients who had survived an OHCA during 2008 to 2011, with a cerebral performance score of ≤2 at discharge. The patients were identified through the Swedish registry of OHCA. The Self-administered comorbidity questionnaire and EQ VAS (Euroqol questionnaire visual analogue scale) was used to measure morbidity and health status., Results: Of 298 survivors, 224 were eligible for the study and 127 responded. Mean time from cardiac arrest (CA) to follow up was 178 days. Comparing the 127 respondents with the 97 lost to follow-up and non-respondents, no significant differences were found in terms of age, sex, factors at resuscitation and in-hospital interventions. The EQ VAS median was 75 (25th,75th percentile 60,80)). Self-rated health differed between respondents reporting 0-2 conditions (n=68) and respondents reporting more than two (n=43), median EQ VAS 78 (68,90) and 65 (50,80)), respectively; p-value 0.0001., Conclusions: Despite a limited response rate, representativeness in terms of patient characteristics among survivors of OHCA with an acceptable cerebral function is achievable. A considerable proportion of the survivors lived with the burden of multi-morbidity which worsened health., (Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.)

Background: An Early Supported Discharge (ESD) and rehabilitation from a coordinated team in the home environment is recommended in several high-income countries for patients with mild to moderate symptoms after stroke. Returning home from the hospital takes place very early in Sweden today (12 days post stroke), thus the term Very Early Supported Discharge (VESD) is used in the current study. The aim of this study was to describe patients' expectations of coming home very early after stroke with support and rehabilitations at home., Method: This is an interview study nested within a randomized controlled trial; Gothenburg Very Early Supported Discharge (GOTVED), comparing VESD containing a home rehabilitation intervention from a coordinated team to conventional care after stroke. Ten participants (median age 69) with mild to moderate stroke symptoms (NHISS 0 to 8 points) were recruited from the intervention group in GOTVED. Interviews were conducted 0-5 days before discharge and the material was analyzed with qualitative content analysis., Results: Four main categories containing 11 subcategories were found. The VESD team was expected to provide "Support towards independency", by helping the participants to manage and feel safe at home as well as to regain earlier abilities. The very early discharge gave rise to expectations of coming home to "A new and unknown situation", causing worries not to manage at home and to leave the safe environment at the ward. A fear to suffer a recurrent stroke when being out of reach of immediate professional help was also pronounced. In contrast to these feelings of insecurity and fear, "Returning to one's own setting" described the participants longing home, where they would become autonomous and capable people again. They expected this to facilitate recovery and rehabilitation. "A new everyday life" waited for the participants at home and this was expected to be challenging. Different strategies to deal with these challenges were described., Conclusions: The participants described mixed expectations such as insecurity and fear, and on the other hand, longing to come home. Moreover, they had a high degree of confidence in the expected support of the VESD team. The health professionals at the hospital may build on this trust to reduce the patients' insecurity for coming home. In addition, it may be beneficial to explore the patients' expectations thoroughly in front of discharge, as certain feelings and thoughts could complicate or support the home coming process. Thus, a greater attention on such expectations may facilitate the patient's transition from hospital to home after stroke.

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., (Published on behalf of the European Society of Cardiology. All rights reserved. © The Author 2014. For permissions please email: journals.permissions@oup.com.)