Psychosocial Burden Research Articles

Health and aging before and after retirement

We investigate occupation-specific aging patterns before and after retirement and test the level and rate effects of occupation predicted by the health capital model and the health deficit model. We use five waves of the Survey of Health, Aging, and Retirement in Europe (SHARE) and construct a frailty index for elderly men and women from 10 European countries. Occupational groups are classified according to low vs. high education, blue vs. white collar, and high vs. low physical or psychosocial job burden. Controlling for individual fixed effects, we find that, regardless of the classification used, workers from the first (low-status) group display more health deficits at any age and accumulate health deficits faster than workers from the second (high-status) group. We instrument retirement by statutory retirement ages (“normal” and “early”) and find that the health of workers in low-status occupations benefits greatly from retirement, whereas retirement effects for workers in high-status occupations are small and frequently insignificant. In support of the health deficit model, we find that the health status of individuals from low- and high-status groups diverges before and after retirement.

Burden of Disease and Unmet Needs in the Diagnosis and Management of Atopic Dermatitis in Diverse Skin Types in Australia.

Atopic dermatitis (AD) is a common, chronic, inflammatory skin disease affecting Australians of all ages, races, ethnicities, and social classes. Significant physical, psychosocial, and financial burdens to both individuals and Australian communities have been demonstrated. This narrative review highlights knowledge gaps for AD in Australian skin of colour. We searched PubMed, Wiley Online Library, and Cochrane Library databases for review articles, systematic reviews, and cross-sectional and observational studies relating to AD in Australia for skin of colour and for different ethnicities. Statistical data from the Australian Institute of Health and Welfare and the Australian Bureau of Statistics was collected. In recent years, there has been substantially increased awareness of and research into skin infections, such as scabies and impetigo, among various Australian subpopulations. Many such infections disproportionately affect First Nations Peoples. However, data for AD itself in these groups are limited. There is also little written regarding AD in recent, racially diverse immigrants with skin of colour. Areas for future research include AD epidemiology and AD phenotypes for First Nations Peoples and AD trajectories for non-Caucasian immigrants. We also note the evident disparity in both the level of understanding and the management standards of AD between urban and remote communities in Australia. This discrepancy relates to a relative lack of healthcare resources in marginalised communities. First Nations Peoples in particular experience socioeconomic disadvantage, have worse health outcomes, and experience healthcare inequality in Australia. Barriers to effective AD management must be identified and responsibly addressed for socioeconomically disadvantaged and remote-living communities to achieve healthcare equity.

Approach to epilepsy stigma: From reducing stigma to enhancing dignity

Psychosocial burden of epilepsy is crucial in the care of epilepsy. Traditionally the effort to overcome the psychosocial burden of people with epilepsy has been by reducing social stigma but less on self- perceived stigma. Self-perceived stigma is an aspect of self-esteem and dignity. Maslow has divided the self-esteem and dignity into the “lower” and “higher” version. The “lower” version is the respect from others. The “higher” version is from self-evaluation. Thus, the approach to reduce stigma works toward “lower” version of esteem. A comprehensive approach to increasing esteem and dignity should thus also include efforts toward the “higher” version, to improve self-evaluation. In fact, enhancing self-esteem by reducing stigma also exert its effect through self-evaluation. As self-evaluation is dependent on cultural values, dialogue with the traditional culture, to draw out the relevant elements in the culture is a neglected aspect of comprehensive epilepsy care.

A critical analysis of online social support for young people experiencing chronic pain

ABSTRACT Objective Chronic pain is a prevalent and costly public health problem for young people. The associated physical, psychosocial, and psychological burdens, including higher degrees of social isolation, are well documented. Pathways to receive and offer support can be found with online social support (OSS). Research indicates OSS features impact the frequency of use, reach, safety and overall experience for the user. Methods We conducted a rigorous internet search to identify and appraise the available English-language OSS worldwide for young people with chronic pain. Through Google, two complementary search strategies were used to identify the available OSS. The general characteristics and features of the available OSS were then extracted. Results The search strategies produced a total yield of 1319 websites of which 11 OSS websites were identified as meeting inclusion criteria. Characteristics of OSS varied significantly, such as moderation, site access requirements and safeguarding features. Only two of the OSS sites, both being affiliated with a hospital, offered all of the features suggested by the literature to mitigate the potential for harm. Conclusions Despite the prevalence of chronic pain in young people and clear benefits to utilise support online, there is a paucity of available high-quality OSS available for access and support. When young people do go online with the hope to receive support, a safe space to share experiences may not be easily found. It appears an important opportunity is being missed for this group to foster social connections that may be unavailable offline.

Arrived, Yet In-between: Experiences of Iranian Asylum-Seeker Women Living with Insecure Residency in Australia

The plight of asylum seekers is a politically contested issue in Australia. Iranian women have been the largest number of asylum-seekers/Many have bridging visas without secure residency status. Prolonged insecure residency may contribute to less integration and psychological dysfunction. This study aimed to better understand the psychosocial ramifications of living with insecure residency among Iranian asylum-seeker women in the Australian community. A qualitative study using semi-structured interviews was undertaken between February and December 2015, with Iranian asylum-seeker women who had been living in Australia for 2–3 years. Data were analysed using thematic analysis. Seventeen participants described their experiences and perspectives describing socio-economic ramifications and fear of deportation and feelings of hopelessness associated with their insecure residency status. Poor integration into Australian communities and high levels of psychosocial burdens were commonly described. Protracted protection visa processing time has negative effects on asylum seekers’ health. Policymakers should consider the psychosocial impact of restrictions attached to bridging visas. In addition to lifting barriers that slow the protection visa process, identifying the pre-resettlement skills of asylum seekers may facilitate better settlement and mental well-being.

Strengths and Difficulties of 3- to 15-Year-Old Children and Adolescents in the Second andThird Year of the Corona Pandemic - Results of a Household-Representative Survey in Germany

Behavioural strengths and psychosocial problems in children and adolescents between the ages of 3 and 15 are reported. The survey is based on a household-representative sample of 2,421 parents or guardians providing information on their everyday family-life in summer 2021 by online-questionnaire. 704 of the respondents participated again in the spring of 2022. In result, the behaviour of a quarter of the children and adolescents is described as psychosocially borderline/abnormal over the survey period (SDQ total). About a third of children and adolescents have emotional problems, behavioural problems or problems with their peers (respective SDQ-subscales). The proportion of primary-school children with emotional problems increases from summer 2021 to the following spring. Families in which children with disabilities live are disproportionally more affected. The results are discussed with regard to the SDQ standard values available for Germany, as well as the families' self-reported supportneeds and their planned use of professional support-services. Given the psychosocial burden of children, adolescents and their families presented here, which become apparent well after the closures of day-care centres and schools, or other contact-restricting measures to contain the pandemic, have ended, it remains of interest to observe how their well-being will further develop over time.

How are families in Germany doing in 2022? Study protocol of a nationally representative, cross-sectional study of parents with children aged 0-3 years.

In order for Early Childhood Intervention (ECI) to be effective, data-based information on families' resources, burden and current use of support services for families with young children, as well as on children's health and development is needed. The study Kinder in Deutschland [Children in Germany]-KiD 0-3 2022 aims at providing these data to help us understand families' situation and needs in Germany now, including families' experience of the COVID-19 pandemic. The study will recruit up to 300 pediatricians who will invite parents of children aged up to 48 months to participate in the study during a well-child visit. Parents (goal N = 8,000) will complete an online-questionnaire with their own web-enabled device. Pediatricians will complete a short questionnaire about each participating family. The questionnaires cover family psychosocial burden and resources, child health and development, use of family support services, as well as the families' experiences of the COVID-19 pandemic. Data will be analyzed to assess patterns of families´ psychosocial burdens and resources, use of support services for families with young children, and children´s health and development. Concordance between parent and pediatrician report will be assessed and comparisons with the predecessor study of 2015 will be drawn. Findings will be disseminated through scientific conferences, open access peer-reviewed journals, and dissemination channels of the National Centre for Early Prevention. The present study will provide parent and pediatrician reports on how families with young children are doing in Germany. These data will be used to inform Germany's early childhood intervention (ECI) program ("Frühe Hilfen") on current needs of families with young children.

A bibliometric and visualized research on global trends of scar, 2011–2021

ObjectivePathological scars are the results of abnormal wound healing, which not only affect the appearance, but may also be accompanied by significant psychosocial burdens. In this study, we aimed to conduct a bibliometric and visualized analysis on pathological scars and provide directions for future research. MethodsThe articles on scar research from 2011 to 2021 in the Web of Science Core Collection database were collected. The bibliometrics records were retrieved and analyzed with Excel, CiteSpace V and VOSviewer. ResultsA total of 944 scar research records published between 2011 and 2021 were collected. Publication output has shown an upward trend as a whole. China ranked first in terms of country contributions (418 publications, 5176 citations), while Germany, with only 22 studies published, had the highest average citation rate (57.18). Shanghai Jiaotong University was the institution with the largest number of related articles published, followed by the fourth military medical university, the University of Alberta and the Second military medical university. Wound repair and regeneration, Burns, Journal of Burn Care & Research, Journal of Cosmetic Dermatology published the most research in this field. Dahai Hu was the most prolific author, while Rei Ogawa was the most cited. The cluster analysis of the reference contributions and keywords indicated that current research hotspots mainly include pathogenesis, treatment strategies, and the safety evaluation of new scar treatment options. ConclusionThis study provides a comprehensive summary and analysis of the current status and research trends of pathological scars. International research interest in pathological scars is on the rise, and high-quality studies related to the field have also increased in the last decade. The pathogenesis of pathological scars, treatment strategies, such as fractional ablative CO2 laser and molecular targeted therapy, and the safety evaluation of new treatment options will be the focus of future research.

Mental stress affects the occurrence and development of psoriasis through neuroendocrine-immune regulation: a narrative review

Psoriasis is a systemic immune-mediated inflammatory disease that presents at any age and is characterized by excessive proliferation and abnormal differentiation of keratinocytes as well as infiltration of multiple inflammatory cells. It has been gradually attracting more attention because of not only the increased risk of cardiovascular, metabolic, and autoimmune-related diseases but also the accompanying depression, anxiety, self-affirmation impairments, dementia, sleep disorders, and other mental disorders that place a substantial psychosocial burden on society and individuals. Mental and psychological disorders are involved in the occurrence, development, outcome, recurrence, and treatment of psoriasis through the neuroendocrine-immune signaling network. This review summarizes the pathogenesis of psychological and psychological disorders in patients with psoriasis with the aim of deepening clinicians’ awareness of the mental and psychiatric comorbidities in patients with psoriasis.

Temperament in trichotillomania and skin picking disorder.

Trichotillomania (TTM) and skin picking disorder (SPD) result in significant psychosocial burden. Despite this burden, however, risk factors related to the development of these disorders remain unclear. The present study assessed temperament in a well-characterized sample of adults with TTM or SPD. A total of 202 adults age 18 to 65 were enrolled; 44 had TTM, 30 had SPD, and 128 served as controls. Participants completed the self-report Tridimensional Personality Questionnaire (TPQ) to examine the severity of TTM and SPD symptoms, quality of life, and temperament. Group differences were characterized and correlations with other measures were examined. Compared to controls, those with TTM or SPD scored significantly higher on harm avoidance and its subscales, with TTM associated with higher scores than SPD. Those with TTM or SPD scored significantly higher on only 1 measure of novelty seeking (extravagance). Higher TPQ harm avoidance correlated with worse hair pulling severity and worse quality of life. The temperament traits of participants with TTM or SPD differed in significant ways from controls; those with TTM or SPD generally demonstrated similar trait profiles. A dimensional approach to the personalities of those with TTM or SPD may offer insight and provide clues to treatment strategies.

Perceived caregiver's burden among children with autism spectrum disorder in central Nepal: a cross-sectional study.

An analytical cross-sectional study was performed in Centre for Autism in Kathmandu, Nepal. The enrolment occurred between January 2022 and July 2022 among the caregivers of children with ASD. One hundred twenty caregivers in contact with the centre was evaluated using the Zarit Burden Interview-22 during the study period meeting inclusion criteria. Our study showed that majority of caregivers among child with ASD were mothers 65 (54.16%, n=65) followed by grandparents 35 (29.16%, n=35) and father 13 (10.8%), respectively. Among them, most of the caregivers perceived moderate to severe burden 57 (47.5%) followed by mild to moderate burden 45 (37.5%) and only 7 (5.8%) of the caregivers perceived severe burden during the study which was found to be statistically significant. This study highlighted the fact that although most of the caregivers perceived moderate to severe burden while caring a child with ASD. The degree of burden significantly correlated with the level of ASD in the child.

Spinal Cord Injury: Extent of Disability, Complications, and Management of Patients in The Community – An Overview for Primary Care Physicians

In terms of mortality and morbidity, spinal cord injury (SCI) is the second most frequent severe traumatic event globally, behind traumatic brain injury. SCI causes physical, psychological, social, and financial dysfunction not only to patients but also to their families. This review aims to highlight the most common potentially reversible medical issues faced by patients affected by SCI in the community so that they could be addressed early at the primary care level. In this narrative review, the leading causes of morbidity following SCI including cardio-pulmonary complications, bowel, and bladder-related complications and autonomic dysreflexia are presented with recommendations for their management. We explore the management of bone health-related, pressure injury-related complications and psychosocial aspects of care, and present recommendations to improve the quality of life of patients with SCI. Early detection and management of complications of SCI at the primary care level will help reduce the financial costs and psychosocial burden of this major cause of long-term disability.

Epidemiology, survival, costs, and quality of life in adults with short bowel syndrome.

Short bowel syndrome (SBS) is a rare disorder with known physical, psychosocial, and economic burdens and significant morbidity and mortality. Many individuals with SBS require long-term home parenteral nutrition (HPN). The incidence and prevalence of SBS is difficult to determine because it is often based on HPN usage and may not account for those who receive intravenous fluids or achieve enteral autonomy. The most common etiologies associated with SBS are Crohn's disease and mesenteric ischemia. Intestinal anatomy and remnant bowel length are prognostic for HPN dependency, and enteral autonomy confers a survival advantage. Health economic data confirm that PN-related costs are higher for hospitalizations than at home; yet significant healthcare resource utilization is necessary for successful HPN, and patients and families report substantial financial distress that impacts quality of life (QOL). An important advancement in QOL measurement is the validation of HPN- and SBS-specific QOL questionnaires. In addition to the known factors negatively impacting QOL, such as diarrhea, pain, nocturia, fatigue, depression, and narcotic dependency, research has shown that the volume and number of PN infusions per week is associated with QOL. Although traditional QOL measurements describe how underlying disease and therapy influence life, they do not assess how symptoms and functional limitations affect the QOL of patients and caregivers. Patient-centered measures and conversation focused on psychosocial issues helps patients with SBS and HPN dependency better cope with their disease and treatment. This article presents a brief overview of SBS, including epidemiology, survival, costs, and QOL.

Comparison of an intermittently scanned (flash) continuous glucose monitoring system to standard self-monitoring of capillary blood glucose in gestational diabetes mellitus.

Objective Gestational diabetes mellitus (GDM) requires close surveillance of blood glucose to prevent perinatal morbidity. Self-monitoring of capillary blood glucose (BGM) comes with considerable psychosocial burden. Intermittently scanned CGM (isCGM) devices are discreet and could considerably impact the lifestyle of the patient. They are designed to replace BGM testing in nonpregnant patients. Data on this technology in pregnancy is scant. The aim of this study was to assess concordance of BGM with isCGM in GDM. Methods IRB approved prospective single arm study evaluating agreement of isCGM (Freestyle Libre 14 day system) compared to BGM when determining glucose levels fasting and 2 hours postprandial for 14 days. This was documented as percentage of results within Zone A (clinically accurate measurements with no effect on clinical action) or Zone B (values that deviate from reference by >20% but would lead to benign/no treatment) of the Parkes Error Grid (developed for non-pregnant patients with diabetes). Per International Organization for Standardization (ISO) criteria, agreement was defined as >95% within Zone A or B. Analytical agreement was evaluated using mean and median absolute relative difference (ARD), mean and median absolute difference (AD). Results There were 1604 pairs of BGM/isCGM observations for 41 patients. Mean glucose values were 102.0 (SD 20.5) mg/dL and 89.4 (SD 20.1) mg/dL for BGM and isCGM, respectively. Mean and median AD were 15.9 and 13.0 mg/dL, respectively. Mean and median ARD were 15.9% and 12.5%, respectively. Zones A and B contained 76.9% and 22.9% of values, respectively, in the Parkes Error Grid, for a total of 99.8%. Conclusions BGM and isCGM demonstrate clinical agreement. However, glucose values with isCGM trended lower, with greater mean and median ARD than prior studies. Given the strict glycemic control required during pregnancy, physicians should be aware of these differences and their possible clinical implications.

Satisfaction with Life and Coping Strategies among Patients with Hidradenitis Suppurativa: A Cross-Sectional Study.

Hidradenitis suppurativa (HS) is a chronic recurrent inflammatory dermatosis with vast psychosocial burden. The objective of this study is to thoroughly analyze satisfaction with life (SWL) and coping strategies of HS patients in relation to the clinical and psychosocial factors. 114 HS patients (53.1% females; mean age 36.6 ± 13.1 years) were enrolled. Severity of the disease was measured using Hurley staging and International HS Score System (IHS4). Instruments utilized: Satisfaction with Life Scale (SWLS); Coping-Orientation to Problems-Experienced Inventory (Brief COPE); HS Quality of Life Scale (HiSQoL); Patient Health Questionnaire-9 (PHQ-9); Generalized Anxiety Disorder-7 (GAD-7); General Health Questionnaire (GHQ-28). SWL was low in 31.6% of HS patients. No relation was found between SWL and Hurley staging and IHS4. SWL correlated with GHQ-28 (r = -0.579 p < 0.001), PHQ-9 (r = -0.603 p < 0.001), GAD-7 (r = -0.579 p < 0.001), and HiSQoL (r = -0.449 p < 0.001). Problem-focused coping strategies were most commonly used, followed by emotion-focused coping and avoiding coping strategies. Significant differences were found between the following coping strategies and SWL: self-distraction (p = 0.013), behavioral-disengagement (p = 0.001), denial (p = 0.003), venting (p = 0.019), and self-blame (p = 0.001). HS patients present low SWL which correlates with psychosocial burden. Reducing anxiety-depression comorbidity and encouraging optimal coping strategies may be of great importance in holistic approach to HS patients.

Emotional experiences of family caregivers of children with Dravet syndrome

BackgroundSince the psychosocial implications of Dravet syndrome (DS) are much more serious and far-reaching than in other types of epilepsy, caring for a DS child seriously affects the entire family. This study describes the emotional experiences of family caregivers of DS children and evaluates the way caregiving affects their perceived quality of life. MethodsAn anonymous, self-administered online questionnaire was sent to family caregivers of DS children through the online patient advocacy organization the Association for People with Severe Refractory Epilepsy DRAVET.PL. It focussed on the psychosocial impact of caregiving for DS children, the perceived burden of caregiving, caregivers’ emotional experiences and feelings related to caregiving, and the impact of DS on the perceived quality of life. ResultsCaregivers stressed that caring for a DS child is associated with a significant psychosocial and emotional burden that affects the entire family. Although most caregivers reported that it was the child’s health problems and behavioral and psychological disorders that were the most challenging aspects of caregiving, they were also burdened by the lack of emotional support. As caregivers were profoundly engaged in caregiving, they experienced a variety of distressing emotions, including feelings of helplessness, anxiety and fear, anticipated grief, depression, and impulsivity. Many caregivers also reported that their children’s disease disrupted their relationships with their spouses, family, and healthy children. As caregivers reported experiencing role overload, physical fatigue, and mental exhaustion, they stressed the extent to which caregiving for DS children impaired their quality of life, their social and professional life, and was a source of financial burden. ConclusionsAs this study identified specific burden domains affecting DS caregivers’ well-being family carers often need special attention, support, and help. To alleviate the humanistic burden of DS carers a bio-psychosocial approach focusing on physical, mental, and psychosocial interventions should include both DS children and their caregivers.

A Comparative Analysis of the Predictors, Extent and Impacts of Self-stigma in Patients with Psoriasis and Atopic Dermatitis

The impact of dermatological diseases goes beyond symptoms and often includes psychosocial burden. Self-stigmatization plays a key role in this relationship and was compared in patients with psoriasis and atopic dermatitis to evaluate the validity of cross-disease stigmatization models. In total, 101 patients per indication were included in this cross-sectional study. Besides sociodemographic and clinical data, patient-reported outcome measures relating to self-stigmatization, depression, anxiety, and quality of life were compared across groups. Sociodemographic and clinical factors were tested for their moderating effects between self-stigmatization and quality of life. Group mean comparisons yielded no significant differences in self-stigmatization between patient groups. In both diseases, self-stigmatization significantly predicted depression and anxiety symptoms as well as quality of life. Current symptoms, not having close social relationships, and lower age predicted self-stigma in patients with psoriasis, whereas the involvement of sensitive body areas, the sum of previous treatments, and female sex were predictors in patients with atopic dermatitis. In both groups, symptoms had significantly moderating effects. The results underline the relevance of self-stigmatization in patients with chronic skin diseases. Awareness should be raised, screening implemented, and psychosocial support offered early on. Assessments, conceptual models of self-stigma, and interventions are probably applicable for both diseases.

Radiation Therapy at the End of-Life: Quality of Life and Financial Toxicity Considerations

In patients with advanced cancer, radiation therapy is considered at various time points in the patient's clinical course from diagnosis to death. As some patients are living longer with metastatic cancer on novel therapeutics, radiation oncologists are increasingly using radiation therapy as an ablative therapy in appropriately selected patients. However, most patients with metastatic cancer still eventually die of their disease. For those without effective targeted therapy options or those who are not candidates for immunotherapy, the time frame from diagnosis to death is still relatively short. Given this evolving landscape, prognostication has become increasingly challenging. Thus, radiation oncologists must be diligent about defining the goals of therapy and considering all treatment options from ablative radiation to medical management and hospice care. The risks and benefits of radiation therapy vary based on an individual patient's prognosis, goals of care, and the ability of radiation to help with their cancer symptoms without undue toxicity over the course of their expected lifetime. When considering recommending a course of radiation, physicians must broaden their understanding of risks and benefits to include not only physical symptoms, but also various psychosocial burdens. These include financial burdens to the patient, to their caregiver and to the healthcare system. The burden of time spent at the end-of-life receiving radiation therapy must also be considered. Thus, the consideration of radiation therapy at the end-of-life can be complex and requires careful attention to the whole patient and their goals of care.

280 Estimating Latent Attitudinal and Behavioral Risk Profiles and Associations with Food Allergy-Related Quality of Life

OBJECTIVES/GOALS: Childhood food allergy (FA) is a chronic condition that can profoundly impact patient and caregiver quality of life (QoL). Risk factors for impaired FA-related QoL remain largely unknown. This study aims to estimate latent profiles of caregiver attitudes and behaviors, and examine if group membership correlates with established QoL outcomes. METHODS/STUDY POPULATION: This project is subsumed under the FORWARD study (5R01AI130348-04), a multisite longitudinal cohort study conducted at four major pediatric medical centers. Eligible participants include caregivers of children ages 12 years and under who identify as Black or White and have at least one physician-diagnosed FA. Participants complete intake surveys, annual clinical visits, and quarterly surveys administered via REDCap. As of November 2022, 413 Non-Hispanic Black and 486 Non-Hispanic White participants were enrolled. RESULTS/ANTICIPATED RESULTS: We anticipate that specific latent profiles will emerge based on caregiver-reported attitudes and behaviors. We predict these profiles will demonstrate configural, metric, and scalar invariance across key sociodemographic strata (e.g., child race/ethnicity, household income, caregiver educational attainment, and child sex). Relatedly, we anticipate that sociodemographic factors, such as race, sex, ethnicity, parental education, and income, will significantly predict group membership. Finally, we predict that latent profile membership will be associated with different levels of quality of life, as assessed by the parental food allergy-related quality of life questionnaire (FAQLQ-PF-10) and other validated measures of FA-related psychosocial burden. DISCUSSION/SIGNIFICANCE: Given the psychosocial burden associated with FA, and limited mental health resources for patients and families, it is essential to improve understanding of how caregiver attitudes influence behavior and disease management outcomes. In so doing, we will inform the development and implementation of tailored interventions for those at highest risk.

Burden experienced by informal caregivers of children with sickle cell disease (SCD): a qualitative exploratory study at Tamale Teaching Hospital, Ghana

ObjectiveThis study sought to explore the burden experienced by informal caregivers in caring for their children with sickle cell disease (SCD).DesignA qualitative exploratory design was employed in the study using...