A Critical Review of the Impact of Sarcoma on Psychosocial Wellbeing.
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ABSTRACT:
SUBMITTER: Storey L
PROVIDER: S-EPMC6397984 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundArthrogryposis multiplex congenita (AMC) is a group of congenital conditions characterized by joint contractures in two or more body areas. Management of AMC starts early in life and focuses on improving mobility and function through intensive rehabilitation and surgical interventions. Psychosocial wellbeing is an important determinant of health and the psychosocial experience of individuals with AMC should be considered in the management of this condition. The aim of this scoping review was to explore what is known about the psychosocial wellbeing of children and adults with AMC, to identify the outcome measures used and to explore the factors associated with psychosocial outcomes in this population.MethodsA comprehensive search in four databases was conducted. Articles discussing psychosocial outcomes and outcome measures used with children or adults with AMC were included. Data on the measures used, psychosocial outcomes, and factors associated with psychosocial outcomes, were extracted and analyzed descriptively and synthesized narratively.ResultsSeventeen articles were included in this scoping review, ten including the pediatric population, six including adults and one article including both children and adults with AMC. The most commonly used outcome measures were the PODCI in the pediatric studies, and the SF-36 in studies on adults. In the pediatric studies, psychosocial outcomes were often secondary, compared to the studies on adults. Results showed that in both children and adults, psychosocial outcomes are comparable with the levels of the general population. Qualitative studies reflected the affective needs of this population and issues with emotional wellbeing. Factors such as fatigue and pain were associated with poorer psychosocial outcomes in adults with an impact on social relationships, intimacy and family planning.ConclusionValidated outcome measures, qualitative approaches and longitudinal studies are needed to better understand the psychosocial outcomes in AMC over time. Psychosocial support should be part of the multidisciplinary management of AMC throughout the lifespan.
| S-EPMC8628374 | biostudies-literature
Project description:AimsDespite the magnitude and protracted nature of the Rohingya refugee situation, there is limited information on the culture, mental health and psychosocial wellbeing of this group. This paper, drawing on a report commissioned by the United Nations High Commissioner for Refugees (UNHCR), aims to provide a comprehensive synthesis of the literature on mental health and psychosocial wellbeing of Rohingya refugees, including an examination of associated cultural factors. The ultimate objective is to assist humanitarian actors and agencies in providing culturally relevant Mental Health and Psychosocial Support (MHPSS) for Rohingya refugees displaced to Bangladesh and other neighbouring countries.MethodsWe conducted a systematic search across multiple sources of information with reference to the contextual, social, economic, cultural, mental health and health-related factors amongst Rohingya refugees living in the Asia-Pacific and other regions. The search covered online databases of diverse disciplines (e.g. medicine, psychology, anthropology), grey literature, as well as unpublished reports from non-profit organisations and United Nations agencies published until 2018.ResultsThe legacy of prolonged exposure to conflict and persecution compounded by protracted conditions of deprivations and displacement is likely to increase the refugees' vulnerability to wide array of mental health problems including posttraumatic stress disorder, anxiety, depression and suicidal ideation. High rates of sexual and gender-based violence, lack of privacy and safe spaces and limited access to integrated psychosocial and mental health support remain issues of concern within the emergency operation in Bangladesh. Another challenge is the limited understanding amongst the MHPSS personnel in Bangladesh and elsewhere of the language, culture and help-seeking behaviour of Rohingya refugees. While the Rohingya language has a considerable vocabulary for emotional and behavioural problems, there is limited correspondence between these Rohingya terms and western concepts of mental disorders. This hampers the provision of culturally sensitive and contextually relevant MHPSS services to these refugees.ConclusionsThe knowledge about the culture, context, migration history, idioms of distress, help-seeking behaviour and traditional healing methods, obtained from diverse sources can be applied in the design and delivery of culturally appropriate interventions. Attention to past exposure to traumatic events and losses need to be paired with attention for ongoing stressors and issues related to worries about the future. It is important to design MHPSS interventions in ways that mobilise the individual and collective strengths of Rohingya refugees and build on their resilience.
| S-EPMC6998923 | biostudies-literature
Project description:Beyond the functional tasks that assistance dogs are trained for, there is growing literature describing their benefits on the psychosocial health and wellbeing of their handlers. However, this research is not only widely disparate but, despite its growth, has not been reviewed since 2012. Our objective was to identify, summarize, and methodologically evaluate studies quantifying the psychosocial effects of assistance dogs for individuals with physical disabilities. Following PRISMA guidelines, a systematic review was conducted across seven electronic databases. Records were independently screened by two authors. Studies were eligible for inclusion if they assessed outcomes from guide, hearing, medical, or mobility service dogs, if they collected original data on handlers' psychosocial functioning, and if the outcome was measured quantitatively with a validated, standardized measure. Studies on psychiatric service dogs, emotional support dogs, and pet dogs were excluded. Of 1,830 records screened, 24 articles were identified (12 publications, 12 theses) containing 27 studies (15 cross-sectional, 12 longitudinal). Studies assessed the effects of mobility (18), hearing (7), guide (4), and medical (2) assistance dog partnerships with an average sample size of N = 83. An analysis of 147 statistical comparisons across the domains of psychological health, quality of life, social health, and vitality found that 68% of comparisons were null, 30% were positive in the hypothesized direction, and 2% were negative. Positive outcomes included significant effects of having an assistance dog on psychological wellbeing, emotional functioning, self-esteem, and vitality. However, it is of note that several methodological weaknesses of the studies make it difficult to draw any definitive conclusions, including inadequate reporting and a failure to account for moderating or confounding variables. Future research will benefit from stronger methodological rigor and reporting to account for heterogeneity in both humans and assistance dogs as well as continued high-quality replication.
| S-EPMC7710121 | biostudies-literature
Project description:Frailty in middle-aged and older adults is associated with diabetes-related complications. The impact of and interaction between diabetes and frailty on psychosocial wellbeing and mortality in Ireland for adults aged ≥50 years were assessed using data from the Survey of Health, Ageing and Retirement in Europe. Measures included diabetes status (self-reported), frailty phenotype (≥3/5 criteria), low self-rated health ("fair" or "poor"), depression screening (EURO-D index score ≥4), and low quality of life (QoL) (CASP-12 index score < 35). Among the 970 participants, those with diabetes (n = 87) were more likely to be frail (23% vs. 8%; p < 0.001), have low self-rated health (46% vs. 19%; p < 0.001), depression (25% vs. 17%; p = 0.070), and low QoL (25% vs. 18%, p = 0.085). Adjusting for diabetes, age and sex, frailty independently predicted low self-rated health (OR: 9.79 (5.85-16.36)), depression (9.82 (5.93-16.25)), and low QoL (8.52 (5.19-13.97)). Adjusting for frailty, age and sex, diabetes independently predicted low self-rated health (2.70 (1.63-4.47)). The age-sex adjusted mortality hazard ratio was highest for frailty with diabetes (4.67 (1.08-20.15)), followed by frailty without diabetes (2.86 (1.17-6.99)) and being non-frail with diabetes (1.76 (0.59-5.22)). Frailty independently predicts lower self-reported wellbeing and is associated with reduced survival, underpinning its role as an integral part of holistic diabetes care.
| S-EPMC7766174 | biostudies-literature
Project description:Purpose: A number of studies, including systematic reviews, show beneficial effects of psychosocial interventions for people with diabetes mellitus; however, they have not been assessed using meta-analysis. The purpose of this meta-analysis of randomized controlled trials is to investigate the effects of psychosocial interventions on depressive and anxiety symptoms, quality of life and self-efficacy in individuals with diabetes mellitus. Methods: The databases Pubmed, MEDLINE, CINAHL, PsycINFO, Scopus, Web of Science and SocINDEX were searched with no year restriction. Eligible studies were randomized controlled trials published in English that included individuals diagnosed with diabetes mellitus, aged 18 years or above, who engaged in a psychosocial intervention, with outcome measures addressing depressive or anxiety symptomology, quality of life or self-efficacy. Eligible studies needed to compare the intervention to usual care. Study selection was completed using Covidence and meta-analysis was undertaken using Comprehensive Meta-Analysis software. Results: Seven studies were included in the meta-analysis. Five studies investigated the effects of psychosocial interventions and showed a medium to large benefit for depressive symptoms (SMD: -0.70; CI: -1.27, -0.13) which persisted at follow up (SMD: -1.54, CI: -2.97, -0.12). Similar results were not seen immediately post-intervention in the three studies that assessed anxiety symptoms (SMD: -0.30; CI: -0.69, 0.10); however, a medium beneficial effect was seen at follow up (SMD = -0.61, CI = -0.92 to -0.31). Small benefits were seen in the three studies assessing quality of life outcomes (SMD: 0.30, CI: 0.06, 0.55). No benefit was seen in the two studies assessing self-efficacy (SMD: 0.23, CI: -0.11, 0.57). Conclusions: The results of the current study provide preliminary evidence that psychosocial interventions, compared to usual care, reduce depressive symptoms, and may improve quality of life in individuals with diabetes. However, only a few studies were included and the clinical significance of these findings is unknown.
| S-EPMC5723413 | biostudies-literature
Project description:Cancer cachexia has impact on patients and their family members. Patients experience loss of weight often accompanied by anorexia and other debilitating symptoms that have clinical impact and impact everyday life. The importance of understanding this impact lies in (1) the alleviation of cachexia-related suffering and (2) its implications for treating cachexia.Two decades of exploratory investigation of the manifestations, meaning and management of cancer cachexia reveal emotional and social impacts for both patients and their carers. Patients can describe change in appearance and loss of physical strength often accompanied by change in eating habits (amount, type and pattern of food intake). The psychosocial effects can include loss of independence, sense of failure, sense of helplessness, conflict with family members over food, social isolation and thoughts of death. They are effects that can distress. Conversely, weight loss, especially early in its course and for those who are obese, can be perceived as beneficial, which inhibits self-management of diet and physical activity.Models of the psychosocial effects of cancer cachexia have been developed, leading to, as yet unproven, propositions of how negative patient and family impacts can be addressed. This literature overlooks the potential importance of psychosocial intervention to emerging multimodal treatments for the multicausal syndrome. Psychosocial intervention in cachexia should be tested for potential to help people affected by cancer cachexia feel better but also for potential to make people better by aiding uptake and compliance with multimodal therapy.
| S-EPMC4053560 | biostudies-other
Project description:Quality of life and well-being are frequently restricted in adults with neuromuscular disorders. As such, identification of appropriate interventions is imperative. The objective of this paper was to systematically review and critically appraise quantitative studies (RCTs, controlled trials and cohort studies) of psychosocial interventions designed to improve quality of life and well-being in adults with neuromuscular disorders. A systematic review of the published and unpublished literature was conducted. Studies meeting inclusion criteria were appraised using a validated quality assessment tool and results presented in a narrative synthesis. Out of 3,136 studies identified, ten studies met criteria for inclusion within the review. Included studies comprised a range of interventions including: cognitive behavioural therapy, dignity therapy, hypnosis, expressive disclosure, gratitude lists, group psychoeducation and psychologically informed rehabilitation. Five of the interventions were for patients with Amyotrophic Lateral Sclerosis (ALS). The remainder were for patients with post-polio syndrome, muscular dystrophies and mixed disorders, such as Charcot-Marie-Tooth disease, myasthenia gravis and myotonic dystrophy. Across varied interventions and neuromuscular disorders, seven studies reported a short-term beneficial effect of intervention on quality of life and well-being. Whilst such findings are encouraging, widespread issues with the methodological quality of these studies significantly compromised the results. There is no strong evidence that psychosocial interventions improve quality of life and well-being in adults with neuromuscular disorders, due to a paucity of high quality research in this field. Multi-site, randomised controlled trials with active controls, standardised outcome measurement and longer term follow-ups are urgently required.
| S-EPMC5123628 | biostudies-literature
Project description:The 22q11 deletion syndrome (22q11DS) is one of the most common genomic disorders in humans, affecting around 1:2,000 to 1: 4,000 people. 22q11DS affects multiple body systems and is associated with multiple physical problems. Given the high rate of physical morbidity associated with the 22q11DS, it was hypothesized that it would exert a high psychosocial impact on patients and their relatives. To investigate this, a systematic review of the literature and narrative synthesis was performed. Three major themes emerged. First, the complex and conflicting emotions experienced by family members resulting from the diagnosis. Second, the pervasive educational and health-care challenges associated with the diagnosis and third that people affect by 22q11DS strived for individualism. The results of this review help to inform clinical management of families with 22q11DS.
| S-EPMC6221171 | biostudies-other
Project description:BackgroundParticipatory budgeting (PB), citizens deliberating among themselves and with officials to decide how to allocate funds for public goods, has been increasingly implemented across Europe and worldwide. While PB is recommended as good practice by the World Bank and the United Nations, with potential to improve health and wellbeing, it is unclear what evaluations have been conducted on the impact of PB on health and wellbeing.MethodsFor this scoping review, we searched 21 databases with no restrictions on publication date or language. The search term 'participatory budget' was used as the relevant global label for the intervention of interest. Studies were included if they reported original analysis of health, social, political, or economic and budgetary outcomes of PB. We examined the study design, analysis, outcomes and location of included articles. Findings are reported narratively.ResultsFrom 1458 identified references, 37 studies were included. The majority of evaluations (n = 24) were of PB in South America, seven were in Europe. Most evaluations were case studies (n = 23) conducting ethnography and surveys, focussing on political outcomes such as participation in PB or impacts on political activities. All of the quantitative observational studies analysing population level data, except one in Russia, were conducted in South America.ConclusionDespite increasing interest in PB, evaluations applying robust methods to analyse health and wellbeing outcomes are scarce, particularly beyond Brazil. Therefore, implementation of PB schemes should be accompanied by rigorous qualitative and quantitative evaluation to identify impacts and the processes by which they are realised.
| S-EPMC6029380 | biostudies-literature
Project description:With the increasing importance of the internet to our everyday lives, questions are rightly being asked about how its' use affects our wellbeing. It is important to be able to effectively measure the effects of the online context, as it allows us to assess the impact of specific online contexts on wellbeing that may not apply to offline wellbeing. This paper describes a scoping review of English language, peer-reviewed articles published in MEDLINE, EMBASE, and PsychInfo between 1st January 2015 and 31st December 2019 to identify what measures are used to assess subjective wellbeing and in particular to identify any measures used in the online context. Two hundred forty studies were identified; 160 studies were removed by abstract screening, and 17 studies were removed by full-text screening, leaving 63 included studies. Fifty-six subjective wellbeing scales were identified with 18 excluded and 38 included for further analysis. Only one study was identified researching online wellbeing, and no specific online wellbeing scale was found. Therefore, common features of the existing scales, such as the number and type of questions, are compared to offer recommendations for building an online wellbeing scale. Such a scale is recommended to be between 3 and 20 questions, using mainly 5-point Likert or Likert-like scales to measure at least positive and negative affect, and ideally life satisfaction, and to use mainly subjective evaluation. Further research is needed to establish how these findings for the offline world effectively translate into an online measure of wellbeing.
| S-EPMC8006413 | biostudies-literature