Social workers and acquired brain injury: A systematic review of the current evidence-base.

Social work plays an important role in the assessment and treatment of people with acquired brain injury. Acquired brain injury is a complex and highly prevalent condition which can impact on cognitive, emotional and social domains. As acquired brain injury is a hidden disability it can be misdiagnosed or classified as another condition entirely. We sought to systematically explore the evidence base to examine how social workers have been prepared to work with their clients with brain injury. Employing six electronic databases (Social Policy & Practice, Web of Science, Scopus, PubMed, PsycINFO, CINAHL Plus) we reviewed 1071 papers. After applying eligibility criteria 17 papers were included in this review. We utilised standardised data extraction and quality appraisal tools to assess all included papers. Following appraisal, 9 papers were judged as possessing high methodological quality whilst 8 were judged as medium. Employing narrative synthesis, we identified four themes which captured the key findings of these papers. Themes were named as (i) advocacy and social work (ii) training and multidisciplinary team working (iii) inclusion of social networks and (iv) societal barriers. In order to meet their statutory responsibilities to practice safely, social workers must receive training in how to identify ABI and develop understanding of its consequences and subsequent need for provision. Social workers are also in a unique position to advocate for their clients and should make every effort to ensure their needs are met.

Oxford cognitive screen: A critical review and independent psychometric evaluation.

The Oxford cognitive screen (OCS) is a stroke-specific cognitive screening assessment. Although the test developers have provided psychometric information for the assessment, the OCS has received minimal external scrutiny, with which to triangulate the underpinning psychometrics. The purpose of this study is to provide a critical review and independent validation of the OCS. This study analysed data from an anonymised clinical database, which consisted of 316 patients who were assessed using the OCS on an Acute Stroke Unit. The rates of impairment on tests of memory and receptive communication were lower than expectation, suggesting that these subtests may be relatively insensitive. Patients with aphasia were more likely to be unable to categorised as impaired on non-language tests, suggesting that they remain sensitive to language processing or non-dominant hand usage. Some of the subtests of the OCS achieve high retest reliability, which makes them good candidates for measuring cognitive change over time. Although the OCS has many advantages, it is also important to adequately consider its limitations, that is insensitivity to memory problems, the potential confounding impact of non-dominant hand usage, and the potential that some tests may sample overall cognitive ability instead of domain-specific functioning.

Coping with fibromyalgia during the COVID-19 pandemic: adjustment and wellbeing.

OBJECTIVE: Fibromyalgia syndrome (FMS) is a chronic condition with symptoms known to be exacerbated by stress. Individuals with FMS may be experiencing particular distress under Covid-19 pandemic-related lifestyle restrictions. The present study examined wellbeing, perceived symptom change and coping in individuals with and without FMS during pandemic-related social lockdown in the UK. DESIGN: Participants with a diagnosis of FMS (N = 390) and a general public sample with no FMS (N = 151) completed questionnaires at three time points. MAIN OUTCOME MEASURES: BBC Wellbeing Scale, Cognitive-Emotional Regulation Questionnaire measure of coping, perception of extent to which symptoms have worsened or improved over time. RESULTS: Contrary to expectations, FMS participants reported no worsening of symptoms and an increase in wellbeing over the study period. Non-FMS participants experienced worsening health symptoms and no change in wellbeing. Coping strategies involving positive reappraisal, refocussing and planning were positively associated with wellbeing in the FMS group. CONCLUSION: The unpredictable symptom profile in FMS, and the regular readjustment this necessitates, may support a form of resilience which has been adaptive during the pandemic. The results have implications for supporting people with FMS, and potentially other chronic conditions, especially at times of stress.

Experiences of individuals with acquired brain injury and their families interacting with community services: a systematic scoping review.

PURPOSE: This scoping review aims to (1) synthesise the research findings on the experiences of individuals with acquired brain injuries, and their families, when interacting with, or accessing, community-based services and (2) identify where gaps in service provision may exist and their cause. METHODS: A systematic search strategy was employed across multiple databases to identify all studies relating to the experiences of individuals with acquired brain injuries and their families when interacting with, or accessing, community-based services. Inclusion was assessed by at least two reviewers at each stage and data extraction was completed by one researcher and validity checked by another. A narrative synthesis was employed. RESULTS: A total of 101 papers met the inclusion criteria with the narrative synthesis identifying three main themes of (1) unmet needs, (2) types of access, and (3) barriers to access. CONCLUSIONS: The results identify that those with acquired brain injuries, and their families, experience significant difficulties interacting with community-based services and often do not receive appropriate access. Many barriers to access were identified including a lack of knowledge of the long-term effects of acquired brain injury amongst professionals working in health and social care services.Implications for rehabilitationBrain injury is a leading cause of disability worldwide with a range of physical, cognitive, emotional, and behavioural difficulties.It is important that service users and families are given appropriate information about the long-term difficulties associated with ABI so they are better informed about the types of support they may need upon discharge from hospital.Rehabilitation professionals need to ensure they have good level of knowledge of the difficulties associated with ABI to ensure appropriate access to services for individuals and their families.Understanding more about unmet needs allows community rehabilitation services to be tailored and person-centred.

Hidden disability: a study of the psychosocial impact of living with pituitary conditions.

BACKGROUND: Pituitary patients often experience psychosocial symptoms associated with their condition. AIMS: To explore the condition management experiences of pituitary patients and their psychosocial symptoms and to explore the impact of these on quality of life. METHODS: A sample of 748 individuals aged 18 to more than 65 years) completed a questionnaire relating to quality of life and the psychosocial impact of pituitary conditions. FINDINGS: Analysis of the qualitative sections using content analysis identified four themes: social isolation, emotional and behavioural issues, appearance distress and physical and cognitive effects including fatigue and pain. An overarching theme of hidden disability emerged. CONCLUSION: The study identified multiple biopsychosocial factors that impact quality of life, with symptoms not visible to others most likely to impact negatively. Nurses are well placed to provide support and information to patients about the possible psychosocial impact of pituitary conditions to enable positive adjustment.

The inter-relationship between acquired brain injury, substance use and homelessness; the impact of adverse childhood experiences: an interpretative phenomenological analysis study.

PURPOSE: Acquired Brain Injuries, caused by a range of illnesses and injuries, can lead to long-term difficulties for individuals; mental health problems, cognitive and executive impairment and psychosocial problems including relationship breakdown, substance abuse and potentially homelessness. The study aimed to seek and gain a more definitive understanding of the inter-relationship of Acquired Brain Injury, substance abuse and homelessness by identifying key themes associated with the inter-relationship between these variables. MATERIALS AND METHODS: The study recruited eight participants through homeless organisations and treatment centres. Participants were screened for suitability (Brain Injury Screening Index; Drug Abuse Screening Tool; Alcohol Use Disorders Identification Test and then participated in recorded semi-structured interviews, transcribed and analysed using Interpretative Phenomenological Analysis. RESULTS: The study identified five master themes: Adverse Childhood Experiences and Trauma; Mental Health; Cognitive Decline and Executive Function; Services; Relationships. CONCLUSION: Healthcare professionals need to engage with children, their families, and adults, who have been exposed to adverse childhood experiences and should employ routine screening tools for brain injury to ensure their presence is factored into developing appropriate models of intervention.IMPLICATIONS FOR REHABILITATIONNeed person-centred approaches to intervention for those with acquired brain injury who are homeless and have substance abuse issues.Need to screen for the presence of acquired brain injury when engaging with individuals who are homeless or have substance abuse.Need screening of acquired brain injury and adverse childhood experiences to improve access to services post-brain injury.

Living with suicidality following traumatic brain injury: a qualitative study.

PURPOSE: Numbers of traumatic brain injury (TBI) are increasing, and with suicidality post-injury presenting at 3-4 times higher than in the general population, understanding this is crucial in reducing a devastating outcome. Given the lack of literature, this study investigated the experiences of living with suicidality after TBI. METHODS: Interview data from nineteen participants with TBI from a Brain Injury Rehabilitation Unit (BIRU) in New South Wales (NSW), Australia were collected and thematically analyzed. FINDINGS: The participants (predominantly male) sustained extremely severe injuries (median PTA 60 [IQR 81.0] days) and were in the chronic phase post-injury (median 8.0 [IQR 9.0] years). Six main themes were identified; Loss of sense of self, TBI as a hidden disability, Chronic but transient suicidality, Reliance, Protective factors, and Hope. Tentative relationships between themes and subthemes were identified. CONCLUSION: Chronic suicidality after TBI was demonstrated consistently regardless of receiving long-term support. However, their engagement with protective factors such as social support, spirituality and positive personal qualities was identified. Implementing these as coping strategies during long-term rehabilitation may reduce the levels of suicidal distress. Implications, methodological considerations and future research were discussed, with the aim of improving experiences of individuals with TBI to reduce suicidality.

Accepting what we do not know: A need to improve professional understanding of brain Injury in the UK.

Acquired brain injury (ABI) can lead to life-long changes and disability. The complex and extensive nature of behavioural, cognitive, executive, physical and psychological difficulties mean ABI survivors and their families may come into contact with a range of health and social care services as part of their long-term care. This study aimed to understand the ABI knowledge base of professionals across a range of organisations within the UK, and to identify areas for improvement. This was achieved through a mixed methods approach using a mixed methods questionnaire (117 participants) and qualitative semi-structured interviews about service experiences (31 participants) of professionals and service users (families and individuals with ABI). Participants included UK health and social care professionals, ABI specialists, ABI survivors and family members. Data were collected from February 2017 to April 2018. The results of the study identified a lack of knowledge and understanding of ABI among health and social care professionals in the UK, from those involved in acute care through to long-term community services. Poor knowledge was associated with a lack of understanding of "hidden" disabilities associated with ABI, a lack of empathy and a lack of knowledge regarding specific safeguarding. Health and social care professionals across a range of services could benefit in ABI-specific training to improve their knowledge and improve the service currently being provided to individuals with ABI and their families.

Pituitary conditions: importance of geography and the Pituitary Foundation in patient support.

Quality of life is significantly impacted for those with pituitary conditions, and patients need support to meet ongoing physical and psychological needs. This study aimed to explore the support needs and experiences of patients with pituitary conditions in the community. Ten self-selected members of the Pituitary Foundation were interviewed about their conditions, needs and experiences. Data were analysed using thematic analysis. Secondary thematic analysis was conducted on data from a sample of 748 members of the Pituitary Foundation. Four themes were revealed, under one over-arching theme of geography: (1) life-changing diagnosis, (2) the Foundation as a source of support, (3) access to the Foundation and (4) attendance at support groups. On the basis of the findings of this study, the authors concluded that better training is required for health professionals about pituitary conditions, their long-term consequences and the need to signpost patients to wider services offering essential support.

Treatment Choice in Adolescents With Cleft Lip and/or Palate: The Importance of Shared Decision-Making.

OBJECTIVE: Limited research has studied the involvement of children in medical decision-making. The aim of the study was to understand the involvement of adolescents with cleft lip and/or palate (CL/P) in decisions about elective surgeries and treatments. DESIGN: Parents and professionals completed mixed-methods questionnaires about the degree to which children had been involved in choices about elective treatments. Data were analyzed using content analysis. Young people aged 12 to 25 years were asked to take part in semistructured interviews. The data were analyzed using inductive thematic analysis. SETTING: Questionnaire data collection took place online, and interview data were collected via messenger or telephone-based interviews. PARTICIPANTS: The study employed 30 participants; 11 young people (3 male, 8 female), 17 parents (13 mothers, 4 fathers), and 5 professionals (2 surgeons, 2 speech and language therapists, and 1 pediatric dentist). RESULTS: Five main themes were identified. These reflected participants feeling that with increasing age should come increased involvement in decision-making and that it was important for adolescents to "have a voice" during decision-making. Parents, peers, and health professionals were identified as influencing decisions. Most adolescents reported overall satisfaction with their involvement in decision-making but sometimes felt "left in the dark" by professionals or under pressure from parents. A desire to improve speech and/or appearance was as an area where adolescents wanted to be more involved in decision-making. CONCLUSIONS: Shared decision-making is an important factor for psychological well-being by promoting autonomy and self-esteem among adolescents with CL/P.

Adverse childhood experience and asthma onset: a systematic review.

Adverse childhood experiences such as abuse and neglect are associated with subsequent immune dysregulation. Some studies show an association between adverse childhood experiences and asthma onset, although significant disparity in results exists in the published literature. We aimed to review available studies employing a prospective design that investigates associations between adverse childhood experience and asthma. A search protocol was developed and studies were drawn from four electronic journal databases. Studies were selected in accordance with pre-set inclusion criteria and relevant data were extracted. 12 studies, assessing data from a total of 31 524 individuals, were identified that investigate the impact of a range of adverse childhood experiences on the likelihood of developing asthma. Evidence suggests that chronic stress exposure and maternal distress in pregnancy operate synergistically with known triggers such as traffic-related air pollution to increase asthma risk. Chronic stress in early life is associated with an increased risk of asthma onset. There is evidence that adverse childhood experience increases the impact of traffic-related air pollution and inconsistent evidence that adverse childhood experience has an independent effect on asthma onset.

Psychosocial interventions for adults with visible differences: a systematic review.

UNLABELLED: Background. Some individuals with visible differences have been found to experience psychosocial adjustment problems that can lead to social anxiety and isolation. Various models of psychosocial intervention have been used to reduce social anxiety and appearance related distress in this population. The objective of this review was to update a previous systematic review assessing the efficacy of psychosocial intervention programs for adults with visible differences. The original review (Bessell & Moss, 2007) identified 12 papers for inclusion. Methods. A search protocol identified studies from 13 electronic journal databases. METHODS: Studies were selected in accordance with pre-set inclusion criteria and relevant data were extracted. Results. This update identified an additional four papers that met the inclusion criteria. Two papers provided very limited evidence for the efficacy of a combined cognitive-behavioural and social skills training approach. None of the papers provided sufficient evidence for the optimal duration, intensity or setting of psychosocial interventions for this population. Discussion. The review concluded that a greater number of Randomised Controlled Trials and experimental studies were required to increase the methodological validity of intervention studies.

The Effectiveness of Psychosocial Intervention for Individuals With Cleft Lip and/or Palate.

OBJECTIVE: The aim of this review was to assess the effectiveness of different psychological interventions for children and adults with cleft lip and/or palate and their parents. DESIGN: We searched six databases including MEDLINE and EMBASE to June 2013 and checked bibliographies. We included research that evaluated any psychological intervention in studies in which at least 90% of the participants had cleft lip and/or palate or were parents of those with cleft lip and/or palate. Studies containing less than 90% were excluded unless they reported results separately for those with cleft lip and/or palate, or raw data were available upon request from the authors. Inclusion assessment, data extraction, and risk of bias assessment were carried out independently by two reviewers. RESULTS: Seven studies were identified as inclusions, with only two studies being included in the full data analysis (one of which failed to meet the full inclusion criteria). The five remaining studies were included only in a narrative synthesis because data were available for people or parents of those with cleft lip and/or palate only. This highlights a distinct dearth of research into psychological intervention within the field of cleft lip and/or palate. CONCLUSIONS: The review found no evidence to support any specific intervention. Key uncertainties need to be identified and addressed. Adequately powered, methodologically rigorous randomized controlled trials are needed to provide a secure evidence base for psychological intervention techniques in participants with cleft lip and/or palate and their parents.

Psychosocial interventions for patients with head and neck cancer.

BACKGROUND: A diagnosis of head and neck cancer, like many other cancers, can lead to significant psychosocial distress. Patients with head and neck cancer can have very specific needs, due to both the location of their disease and the impact of treatment, which can interfere with basic day-to-day activities such as eating, speaking and breathing. There is a lack of clarity on the effectiveness of the interventions developed to address the psychosocial distress experienced by patients living with head and neck cancer. OBJECTIVES: To assess the effectiveness of psychosocial interventions to improve quality of life and psychosocial well-being for patients with head and neck cancer. SEARCH METHODS: We searched the Cochrane Ear, Nose and Throat Disorders Group Trials Register; the Cochrane Central Register of Controlled Trials (CENTRAL); PubMed; EMBASE; CINAHL; Web of Science; BIOSIS Previews; Cambridge Scientific Abstracts; ICTRP and additional sources for published and unpublished trials. The date of the most recent search was 17 December 2012. SELECTION CRITERIA: We selected randomised controlled trials and quasi-randomised controlled trials of psychosocial interventions for adults with head and neck cancer. For trials to be included the psychosocial intervention had to involve a supportive relationship between a trained helper and individuals diagnosed with head and neck cancer. Outcomes had to be assessed using a validated quality of life or psychological distress measure, or both. DATA COLLECTION AND ANALYSIS: Two review authors independently selected trials, extracted data and assessed the risk of bias, with mediation from a third author where required. Where possible, we extracted outcome measures for combining in meta-analyses. We compared continuous outcomes using either mean differences (MD) or standardised mean differences (SMD) and 95% confidence intervals (CI), with a random-effects model. We conducted meta-analyses for the primary outcome measure of quality of life and secondary outcome measures of psychological distress, including anxiety and depression. We subjected the remaining outcome measures (self esteem, coping, adjustment to cancer, body image) to a narrative synthesis, due to the limited number of studies evaluating these specific outcomes and the wide divergence of assessment tools used. MAIN RESULTS: Seven trials, totaling 542 participants, met the eligibility criteria. Studies varied widely on risk of bias, interventions used and outcome measures reported. From these studies, there was no evidence to suggest that psychosocial intervention promotes global quality of life for patients with head and neck cancer at end of intervention (MD 1.23, 95% CI -5.82 to 8.27) as measured by the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). This quality of life tool includes five functional scales, namely cognitive, physical, emotional, social and role. There was no evidence to demonstrate that psychosocial intervention provides an immediate or medium-term improvement on any of these five functional scales. From the data available, there was no significant change in levels of anxiety (SMD -0.09, 95% CI -0.40 to 0.23) or depression following intervention (SMD -0.03, 95% CI -0.24 to 0.19). At present, there is insufficient evidence to refute or support the effectiveness of psychosocial intervention for patients with head and neck cancer. AUTHORS' CONCLUSIONS: The evidence for psychosocial intervention is limited by the small number of studies, methodological shortcomings such as lack of power, difficulties with comparability between types of interventions and a wide divergence in outcome measures used. Future research should be targeted at patients who screen positive for distress and use validated outcome measures, such as the EORTC scale, as a measure of quality of life. These studies should implement interventions that are theoretically derived. Other shortcomings should be addressed in future studies, including using power calculations that may encourage multi-centred collaboration to ensure adequate sample sizes are recruited.