Browse
Submit Data
Databases
API
Help

Dataset Information

0 Views

0 Connections

0 Citations

0 Reanalyses

0 Downloads

Omics score: 0

Persons with Haemophilia in Sweden- Experiences and Strategies in Everyday Life. A Single Centre Study.

ABSTRACT: Haemophilia is caused by deficiency in coagulation factor VIII or IX. Treatment with the missing coagulation factors has been available in most developed countries for several decades. The aim was to explore the experiences of adults living with severe or moderate haemophilia and their coping strategies at a single centre in Sweden.The interview study had a qualitative empirical approach and was analyzed on the basis of the method empirical phenomenological psychology. The sample included 14 participants, mean age 42 (19-80 y), who met the inclusion criteria and to saturation of information.General characteristics were; All were satisfied with and grateful for access to medication. An acceptance of the disorder and willingness to live a normal life was identified among all participants. They were all content with the care provided by Haemophilia Treatment Centre (HTC) and felt supported by its multidisciplinary team. Four typologies were identified; Protective adults and assertive children during up-bringing, finding a role in social context, symptoms and treatments, fear of limited resources in the future. Task-, emotional- and avoidance coping strategies were seen in the interviews. The most prominent coping strategy was task oriented.This interview study with Swedish PWH shows that they strive for normality and adaptation in social activities throughout life finding their own niche. The PWH expressed the importance of knowledge and support from the comprehensive medical team at HTC and therefore it seems important to continue comprehensive medical care at HTC in order to follow-up the haemophilia persons regularly.

SUBMITTER: Brodin E

PROVIDER: S-EPMC4592191 | biostudies-other | 2015

REPOSITORIES: biostudies-other

ACCESS DATA

Json Xml

Similar Datasets

Embodying Experiences with Nature in Everyday Life Recovery for Persons with Eating Disorders.

Project description:Eating disorders can be understood as attempts to manage a problematic relationship with one's own body. The objective of this qualitative study was to explore and discuss perspectives of embodying "experiences with nature" related to recovery in everyday life for persons experiencing eating disorders. The study was carried out in the context of a hermeneutic phenomenological approach. Eight participants with an interest in nature and friluftsliv (outdoor pursuits), and with experiences with bulimia nervosa and/or binge-eating disorders, were interviewed twice. Interviews took place in nature, in combination with a "going together" method. The results reveal how the participants highlighted experiences with nature as accentuating feelings of calmness and an engagement of the senses. Participants described nature as a non-judgmental environment that also provided room for self-care. This article explores the implications of everyday life perspectives on nature in recovery, as well as of an integrated focus on body and mind in experiences with eating disorders. The article concludes with an emphasis on how participant's embodying experiences with nature enabled a (re)connection with one's own body.

| S-EPMC7215786 | biostudies-literature

Bidirectional Relationships Between Fatigue and Everyday Experiences in Persons Living With HIV.

Project description:Fatigue symptoms are very common among persons living with HIV (PLWH). Fatigue is related to functional and psychological problems and to treatment nonadherence. Using secondary data from ecological momentary assessment, we examined fatigue as a predictor of PLWH everyday experiences. In bidirectional analyses based on the shape shifters model, we also examined these experiences as predictors of fatigue. Data were examined from 67 PLWH who completed daily surveys on a handheld computer. Brief validated scales were used to assess participants' control beliefs, mood, stress, coping, social support, experience of stigma, and motivation. At the beginning and end of the study, fatigue was measured with two CES-D items that have been used in past HIV symptom research. Multilevel models and logistic regression were used to test reciprocal predictive relationships between variables. Moderate to severe fatigue affected 45% of PLWH in the study. Initial fatigue predicted PLWH subsequent overall level of control beliefs, mood, stress, coping, and social support, all p < .05. These state variables remained relatively constant over time, regardless of participants' initial fatigue. In tests for reciprocal relationships with 33 PLWH, average daily stress, OR = 4.74, and stigma, OR = 4.86, also predicted later fatigue. Fatigue predicted several daily survey variables including stress and social support. Stress and support in turn predicted fatigue at a later time, suggesting a self-perpetuating cycle but also a possible avenue for intervention. Future studies should examine daily variation in fatigue among PLWH and its relation to other everyday experiences and behaviors. © 2016 Wiley Periodicals, Inc.

| S-EPMC8603394 | biostudies-literature

Everyday life experiences for evaluating post-traumatic stress disorder symptoms.

Project description:Background: Previous research has highlighted the importance of regularizing daily routines for maintaining mental health. Little is known about whether and how regularity of daily routines is associated with reduced post-traumatic stress disorder (PTSD) symptoms.Objective: We aimed to examine the associations between regularity of daily routines and PTSD symptoms in two studies (N = 796).Method: In Study 1, prospective data were analysed with the latent change score model to investigate the association between sustainment of regular daily routines and change in PTSD symptoms over time amid massive civil unrest in Hong Kong in 2019. Study 2 used vignette as a quasi-experimental method to assess the ability of maintaining regular daily routines in face of a major stressor, and tested its associations with PTSD symptoms.Results: In Study 1, increased regularity of diverse daily routines was inversely associated with increased PTSD symptoms amid the civil unrest in Hong Kong (β = -.427 to -.224, 95% confidence intervals [-.543 to -.359, -.310 to -.090], p values < .01). In Study 2, a greater ability to maintain regular daily routines during stress was associated with lower levels of PTSD symptoms (β = -.285 to -.096, 95% confidence intervals [-.379 to -.189, -.190 to -.003], p values < .05).Conclusions: Our findings suggest the benefit of considering diverse everyday activities in evaluating PTSD symptoms in both clinical and subclinical populations. Interventions with the direct focus on the role of daily living could promote psychological resilience during and after potentially traumatic events.

| S-EPMC10472851 | biostudies-literature

"The importance of awareness, support and inner strength to balance everyday life" - a qualitative study about women's experiences of a workplace health promotion program in human service organizations in Sweden.

Project description:BACKGROUND:In many European countries, women have a higher sickness absence rate than men. Women also report higher levels of work-life conflict, which has a negative impact on women's self-perceived health. Interventions studies on work-life balance literature are scarce. This research adds knowledge about work-life balance by examining female employees' experiences of a newly developed intervention program, the BELE program (Balance in Everyday Life Empowerment program), aiming to enhance the work-life balance and wellbeing of female employees. METHODS:All participants in the BELE program were included in the sample (n?=?55) of the study. The methods used for gathering data were focus group interviews (n?=?8) and semi-structured individual interviews (n?=?8). A qualitative content analysis was used for the analyses. RESULTS:The results showed that a majority of the participants experienced a process of change for enhancement of wellbeing and balance in their everyday life when taking part in the BELE program. In the analyses, three main themes emerged. Reflecting and strengthening inner resource, Trying to change everyday patterns and habits and Experiencing more balance and well-being. CONCLUSIONS:The results point out the importance of awareness and reflection on everyday life to promote work-life balance and wellbeing. The BELE program was described as a wakeup call to one's own life and as an enhancer of empowerment processes and equality in the homes. Moreover, the results showed the need for health education in the workplace focusing on both work and private life to enhance balance and wellbeing among female employees'. The findings indicate that it is important to work at individual and group levels in work-life balance interventions and not merely at the organizational level or in the workplace setting.

| S-EPMC6327387 | biostudies-other

Prevalence of latent tuberculosis in homeless persons: A single-centre cross-sectional study, Germany.

Project description:PURPOSE:Homeless persons have a high risk for tuberculosis. The prevalence of latent tuberculosis infection and the risk for a progression to active tuberculosis is higher in the homeless than in the general population. The objective was to assess the prevalence and risk factors of tuberculosis/latent tuberculosis infection in a homeless population in Germany. METHODS:Homeless individuals (n = 150) were enrolled in a cross-sectional study at three shelters in Münster, Germany (October 2017-July 2018). All participants were screened using an ELISPOT interferon-γ release assay (IGRA). Those participants tested positive/borderline by IGRA provided three sputa for microbiological analysis (line probe assay, microscopy, culture) and underwent a chest X-ray to screen for active pulmonary TB. Risk factors for tuberculosis/latent tuberculosis infection were analysed using a standardized questionnaire. RESULTS:Of the 142 evaluable IGRA, 21 (15%) were positive and two (1%) were borderline. No participant with a positive/borderline IGRA had an active tuberculosis as assessed by chest X-ray and microbiology. A negative IGRA was associated with a citizenship of a low-incidence country for tuberculosis (according to WHO, p = 0.01), low-incidence country of birth (p<0.001) or main residence in a low-incidence country in the past five years (p = 0.002). CONCLUSIONS:The prevalence of latent tuberculosis infection (diagnosed by a positive/borderline IGRA) was 16%; no active tuberculosis was detected. The highest risk for latent tuberculosis infection was found in patients from high-incidence countries. This population at risk should be either treated for latent tuberculosis infection or need to be monitored to early detect a progression into active disease.

| S-EPMC6435138 | biostudies-literature

Mobile ear-EEG to study auditory attention in everyday life : Auditory attention in everyday life.

Project description:Most research investigating auditory perception is conducted in controlled laboratory settings, potentially restricting its generalizability to the complex acoustic environment outside the lab. The present study, in contrast, investigated auditory attention with long-term recordings (> 6 h) beyond the lab using a fully mobile, smartphone-based ear-centered electroencephalography (EEG) setup with minimal restrictions for participants. Twelve participants completed iterations of two variants of an oddball task where they had to react to target tones and to ignore standard tones. A rapid variant of the task (tones every 2 s, 5 min total time) was performed seated and with full focus in the morning, around noon and in the afternoon under controlled conditions. A sporadic variant (tones every minute, 160 min total time) was performed once in the morning and once in the afternoon while participants followed their normal office day routine. EEG data, behavioral data, and movement data (with a gyroscope) were recorded and analyzed. The expected increased amplitude of the P3 component in response to the target tone was observed for both the rapid and the sporadic oddball. Miss rates were lower and reaction times were faster in the rapid oddball compared to the sporadic one. The movement data indicated that participants spent most of their office day at relative rest. Overall, this study demonstrated that it is feasible to study auditory perception in everyday life with long-term ear-EEG.

| S-EPMC8516794 | biostudies-literature

Coordinating physiotherapy care for persons with haemophilia.

Project description:IntroductionPhysiotherapy is highly recommended for persons with haemophilia (PWH), to regain functioning after bleeding and to maintain functioning when dealing with haemophilic arthropathy. However, many PWH live too far from their Haemophilia Comprehensive Care Centre (HCCC) to receive regular treatment at their HCCC. Physiotherapists in primary care may have limited experience with a rare disease like haemophilia.AimTo explore experiences of stakeholders with primary care physiotherapy for PWH and develop recommendations to optimize physiotherapy care coordination.MethodsA RAND approach was used, consisting of a Delphi procedure with e-mailed questionnaires and a consensus meeting. Included stakeholders were PWH, physiotherapists from HCCC's and primary care physiotherapists. HCCC physiotherapists approached patients from their centre and primary care physiotherapists from their network to fill in the questionnaires. Purposive sampling was used to select participants from the survey sample for the consensus meeting.ResultsNinety-six primary care physiotherapists, 54 PWH and eight HCCC physiotherapists completed the questionnaire. Subsequently, four PWH, three primary care physiotherapists and four HCCC physiotherapists participated in the consensus meeting. The questionnaires yielded 33 recommendations, merged into a final list of 20 recommendations based on the consensus meeting. The final rank-order consists of 13 recommendations prioritized by at least one stakeholder.ConclusionCommitment to a formal network is considered not feasible for a rare disease like haemophilia. Development of a practice guideline, easy-accessible information and contact details, two-way and open communication between HCCC and primary care and criteria to refer back to the HCCC are recommended.

| S-EPMC9292005 | biostudies-literature

Everyday life experiences and mental health among conflict-affected forced migrants: A meta-analysis.

Project description:BackgroundThere are a growing number of forced migrants worldwide. Early detection of poor adjustment and interventions to facilitate positive adaptation within these communities is a critical global public health priority. A growing literature points to challenges within the post-migration context as key determents of poor mental health.AimsThe current meta-analysis evaluated the association between daily stressors and poor mental health among these populations.MethodA systematic search in PsycINFO, PubMed, and Web of Science identified relevant studies from inception until the end of 2018. Effect sizes (correlation coefficients) were pooled using Fisher's Z transformation and reported with 95% confidence intervals. Moderator and mediator analyses were conducted. The protocol is available in PROSPERO [CRD42018081207].ResultsAnalysis of 59 eligible studies (n = 17,763) revealed that daily stressors were associated with higher psychiatric symptoms (Zr=0.126-0.199, 95% CI=0.084-0.168, 0.151-0.247, p<0.001) and general distress (Zr=0.542, 95% CI=0.332-0.752, p<0.001). Stronger effect sizes were observed for mixed daily stressors relative to subjective, interpersonal, and material daily stressors, and for general distress relative to posttraumatic stress symptoms and general well-being. Effect sizes were also stronger for children and adolescents relative to adults. Daily stressors fully mediated the associations of prior trauma with post-migration anxiety, depressive, and post-traumatic stress disorder symptoms.ConclusionsThis meta-analysis provides a synthesis of existing research on the role of unfavorable everyday life experiences and their associations with poor mental health among conflict-affected forced migrants. Routine assessment and intervention to reduce daily stressors can prevent and reduce psychiatric morbidity in these populations.

| S-EPMC7064367 | biostudies-literature

Mothers' experiences of parenting and everyday life of children born at 23 weeks of gestation - a qualitative descriptive study.

Project description:BackgroundSurviving children born at 23 gestational weeks are a growing population. As many of these children face developmental challenges during childhood and adolescence, more knowledge is needed about the everyday life of this group. The parental perspective is important, as developmental problems often pose a challenge for the parents. The aim of this qualitative study was to explore mothers' experiences of parenting children born at 23 gestational weeks and of the children's everyday lives.MethodsThis was a qualitative descriptive study conducted with mothers of children born at 23 weeks of gestation. These purposively sampled eight mothers were interviewed using a semi-structured interview. Thematic analysis was used to analyse the interviews.ResultsSeven themes were formed on the basis of the interview data and they are presented in three dimensions: 1) the child seen from maternal perspective included themes 'emphasizing strengths in the midst of challenges', 'relations with peers and siblings', and 'emotional well-being and active life'; 2) the parenting experience included themes 'intensive mothering' and 'gratitude'; 3) the support included themes 'support from the social network' and 'support from society'.ConclusionsThe mothers described how the lives of their children were active and rich. The mothers were dedicated to motherhood and they also expressed feelings of gratitude. Mothers received support from social networks and from society. This qualitative study provided an important complementary perspective to the discussion on extremely premature children's quality of life. It also highlighted the importance of parental perspectives in assessing neonatal care and its outcomes.

| S-EPMC7825219 | biostudies-literature

Experiences of pain in paediatric chronic fatigue syndrome/myalgic encephalomyelitis: a single-centre qualitative study.

Project description:BackgroundModerate to severe pain affects up to two-thirds of children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and is associated with worse fatigue and physical functioning. This research aims to gain a greater insight into pain experienced by these children.MethodsThematic analysis of qualitative data from semistructured interviews with 13 children with CFS/ME (mean age=15.3 years, 67% female) was completed.ResultsThematic analysis enabled construction of three themes: children's wide-ranging experiences of pain, negative impact of pain and lack of effective treatment for pain and nine subthemes. The first theme demonstrated highly varied pain experiences, ranging from 'like [being]… on fire', like 'being stabbed' to 'like…lead'. Children experienced pain in multiple sites and with wide-ranging frequency and severity. The second theme highlighted the profound negative impact of pain on multiple aspects of children's lives. Physical activity was severely impaired; some children 'couldn't leave bed' or 'couldn't…brush [their] own hair'. Abdominal pain meant some would 'go…days without eating'. Pain substantially impacted on mental health, leaving children feeling 'agitated', experiencing 'really bad panic attacks' or making them '[want to] breakdown'. Children felt they 'can't do the things that everyone else can do', had 'missed out' and are 'behind everyone'. Some avoided socialising as they 'don't want to stop everyone else'. The final theme demonstrates the absence of adequate treatment for pain, with participants reporting 'nothing has ever really got rid of it' and only 'slightly [takes] the edge off' and other experiencing side effects.ConclusionsPain in paediatric CFS/ME is highly variable, common and often results in severe physical limitation and poor mental health. Effective treatments for pain represent an unmet need.

| S-EPMC8852759 | biostudies-literature

OmicsDI is part of the ELIXIR infrastructure

OmicsDI is an Elixir interoperability service. Learn more ›

Tweets

OmicsDI Databases

PRIDE
PeptideAtlas
MassIVE
JPOST Repository
Physiome Model Repository

EGA
EVA
ENA
LINCS
PAXDB
Cell Collective

MetaboLights
Metabolomics Workbench
MetabolomeExpress
GNPS
BioModels
FAIRDOMHub

ArrayExpress
dbGaP
ExpressionAtlas
GEO
NODE

Information

Databases
Help
API
Contact us
Code on GitHub
Terms of use
Submit Data