Understanding the interaction between support and social participation for people with physical disabilities: a scoping review protocol.

INTRODUCTION: Around the world, the disability rights movements and the social model of disability have placed emphasis on the importance of social participation for people with disability. People with physical disability who have high and complex support needs often need support to access their communities, however, very little is known about the interaction between support and social participation for this population of people. Therefore, the aim of this scoping review is to explore the literature related to the interaction between support and social participation for adults with disability and understand any existing gaps in the literature where further research may be required in order to maximise quality support and social participation. METHODS AND ANALYSIS: This scoping review will be conducted and reported according to scoping review guidelines outlined by Arksey and O'Malley and later modified by Levac et al, as well as the Preferred Reporting Items for Systematic Reviews and Meta-Analysis: Extension for Scoping Reviews. Thorough database searches will be conducted across MEDLINE, PsycINFO, CINAHL and Scopus. The search will be limited to papers published in English from 2013 onwards. Citations will be uploaded into Covidence and screened by two independent reviewers. Data extraction will extract data regarding participants, housing, support and study characteristics, as well as qualitative and quantitative data relevant to the research question. A narrative synthesis will be used to summarise findings. A minimum of three consultants with lived experience of disability will be engaged to review and contribute to the final scoping review paper. ETHICS AND DISSEMINATION: It is anticipated that the findings of this scoping review will be made available in peer-reviewed publications and also in plain language formats to ensure accessibility to a wide range of audiences. Ethics will not be required for this scoping review.

"Hey, I'm still here!": Maintaining, managing and rebuilding social connections after brain tumour.

It is well recognized that social networks can buffer the adverse effects of chronic illness on psychological wellbeing. However, the functional impairments associated with brain tumour often affect social participation, which may reduce people's capacity to draw upon their social capital for support. This qualitative phenomenological study aimed to understand how brain tumour influences people's ability to manage, maintain, and rebuild their social networks. Participants were 20 individuals (65% female) aged 22-69 years with diverse types of primary brain tumour (50% high grade or malignant) who were on average 35 months post-diagnosis. Two semi-structured interviews, conducted three months apart, comprised a Social Identity Mapping exercise and questions exploring changes in social groups since diagnosis. Two overarching and interrelated themes emerged: engaging and connecting and then versus now. An interplay of barriers, facilitators and strategies influenced people's ability to engage and connect with their social groups, which in turn influenced whether they experienced stability; maintenance and expansion; loss and rebuilding; or loss and shrinkage of their social networks over time. These novel findings highlight the need to develop interventions that specifically focus on enhancing individuals' abilities to maintain or rebuild their social networks.

Feasibility and acceptability of a telehealth platform for delivering the Making Sense of Brain Tumour programme: A mixed-methods pilot study.

ABSTRACTGlioma is a common type of brain tumour that is associated with neurocognitive and psychosocial impairments. This study primarily aimed to investigate the feasibility and acceptability of a videoconferencing format of the Making Sense of Brain Tumour (Tele-MAST) programme. Recruited from a multidisciplinary brain tumour clinic, participants were randomly allocated to the 10-session Tele-MAST programme or standard care, with the latter group offered Tele-MAST after re-assessment. Semi-structured interviews explored participants' experiences of receiving psychological support via the videoconferencing platform. Measures of mental health and quality of life were administered at pre-intervention and post-intervention assessments. Of the 35 patients deemed eligible for the study, 14 (40% accrual) with high grade (71%) or low grade (29%) glioma participated. They were randomized to the Tele-MAST condition (n = 8) or standard care/waitlist (n = 6). Ten individuals commenced the Tele-MAST programme, of whom eight completed ≥8 sessions. The major themes that depicted their experience of the Tele-MAST programme were ease of access and benefits of remote delivery, tailored support and immediacy, and sense of connection versus disconnection. Most participants (63%) demonstrated clinically reliable improvement at post-intervention. These preliminary findings support the feasibility and acceptability of remote delivery of psychological support and highlight the need for a larger-scale evaluation of the Tele-MAST programme.

Subjective cognitive functioning and associations with psychological distress in adult brain tumour survivors.

PURPOSE: The impact of brain tumour on subjective cognitive function (SCF) has received little attention despite the implications of these perceptions for quality of life. SCF consists of two related yet distinct components, perceived cognitive impairment (PCI) and perceived cognitive abilities (PCA). This study compared the SCF of adult brain tumour survivors and healthy controls and examined demographic, illness-related, and psychological factors associated with SCF. METHOD: Sixty-five adult survivors with primary brain tumour (age, 22-75 years), and 65 age- and sex-matched controls were recruited. Participants with brain tumour completed the Brief Test of Adult Cognition by Telephone, Functional Assessment of Cancer Therapy-Cognitive Function (FACT-Cog), ratings of physical symptoms, Depression Scale of the Depression Anxiety Stress Scales-21 (DASS-Depression), and Generalized Anxiety Disorder-7 (GAD-7) scale. Controls completed the FACT-Cog, DASS-Depression, and GAD-7. RESULTS: Adult brain tumour survivors reported significantly greater PCI and lower PCA than controls, after accounting for anxiety. Higher PCI was significantly related to fatigue, pain, treatment-related side-effects, anxiety, and depression. Lower PCA was significantly associated with fatigue, pain, poorer objective cognitive function, lower education, anxiety, and depression. Anxiety uniquely accounted for 9-14% of variance in SCF. CONCLUSIONS: Adult brain tumour survivors were found to experience poorer SCF than healthy controls after accounting for anxiety. SCF was related to multiple factors after brain tumour; however, an independent association with anxiety was identified. IMPLICATIONS FOR CANCER SURVIVORS: These findings highlight the potential value of psychological interventions targeting anxiety and cognitive effects to improve quality of survivorship after brain tumour.

The importance of staying connected: Mediating and moderating effects of social group memberships on psychological well-being after brain tumor.

OBJECTIVE: Functional impairments can lower psychological well-being after brain tumor. Changes in social groups and confidence in support potentially impact this relationship. This study aimed to investigate the influence of social group memberships (SGMs) on the relationship between perceived cognitive and physical impairment and psychological well-being. METHODS: Seventy adults (60% female) with primary brain tumor (46% benign; 18% low grade; 36% high grade) aged 22 to 75 years undertook a brief cognitive test (Brief Test of Adult Cognition by Telephone) then completed self-report measures of cognitive and physical impairment (Functional Assessment of Cancer Therapy), social groups (Exeter Identity Transition Scale), confidence in social support (Self-Efficacy Scale), depression (depression scale of the 21-item Depression, Anxiety and Stress Scale), anxiety (General Anxiety Disorder 7-item scale), and life satisfaction (Satisfaction With Life Scale). The mediating and moderating effects of SGMs were tested using a bootstrapping method and PROCESS macro. RESULTS: Greater perceived cognitive and physical impairments were significantly related to poorer psychological well-being. Mediation analyses indicated significant indirect effects of social group loss for depression and anxiety (P < .05), whereby the relationship between perceived functional impairment and depression and anxiety was partly accounted for by loss of SGMs. Confidence in social groups was a moderator for depression and anxiety (P < .001), such that those perceiving high levels of physical and cognitive impairments who were more confident in their social groups reported lower depression and anxiety. CONCLUSIONS: Functional impairment is in part related to higher levels of depression and anxiety through loss of social groups. However, greater confidence in social support can buffer the effects of functional impairment on psychological well-being after brain tumor. Interventions focusing on ways to maintain social participation and supportive relationships may be beneficial.

The social trajectory of brain tumor: a qualitative metasynthesis.

PURPOSE: Research indicates that strong social ties can buffer the adverse effects of chronic illness on psychological well-being. Brain tumor typically leads to serious functional impairments that affect relationships and reduce social participation. This metasynthesis aimed to identify, appraise and integrate the findings of qualitative studies that reveal the impact of brain tumor on social networks. METHODS: Four major databases (PubMed, CINAHL, Cochrane Library and PsycINFO) were systematically searched from inception to September 2016 for qualitative studies that reported findings on the impact of primary brain tumor on social networks during adulthood. Twenty-one eligible studies were identified and appraised according to the Consolidated Criteria for Reporting Qualitative Research. Key findings of these studies were integrated to form superordinate themes. RESULTS: The metasynthesis revealed the core themes of: 1) Life disrupted; 2) Navigating the new reality of life; and 3) Social survivorship versus separation. CONCLUSIONS: Multiple changes typically occur across the social trajectory of brain tumor, including a loss of pre-illness networks and the emergence of new ones. Understanding the barriers and facilitators for maintaining social connection may guide interventions for strengthening social networks and enhancing well-being in the context of brain tumor. Implications for rehabilitation Social networks and roles are disrupted throughout the entire trajectory of living with brain tumor Physical, cognitive and psychological factors represent barriers to social integration Barriers to social integration may be addressed by supportive care interventions Compensatory strategies, adjusting goals and expectations, educating friends and family and accepting support from others facilitate social reintegration throughout the trajectory of living with brain tumor.