12 research outputs found
âLove makes me feel good inside and my heart is fixedâ: What adults with intellectual disabilities have to say about love and relationships
Background: Adults with intellectual disabilities have historically been hindered, rather than supported, in their desire to form loving relationships. This paper sought to explore with them what kinds of support they wanted in the 21st Century.Method: Semi-structured in-depth interviews were conducted with 40 adults with intellectual disabilities in the UK.Results: Participants placed a high value on having a partner and being supported to maintain and develop a loving relationship. The factors which constrained them in achieving this included a lack of social opportunities, barriers created by social care services and limits on them exercising autonomy. Facilitating factors included access to specialist dating agencies, strong family and staff support and opportunities to learn about relationships.Conclusions: The importance of a loving relationship as a source of pleasure and meaning in the lives of adults with intellectual disabilities who are often disadvantaged in many other spheres of life is emphasised
Quantitative Analysis of the Responses of V1 Neurons to Horizontal
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ASA conference
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Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionalsâ perspectives
Background
Neuro-oncology patients and caregivers should have equitable access to rehabilitation, supportive-, and palliative care. To investigate existing issues and potential solutions, we surveyed neuro-oncology professionals to explore current barriers and facilitators to screening patientsâ needs and referral to services.
Methods
Members of the European Association of Neuro-Oncology and the European Organisation for Research and Treatment of Cancer Brain Tumor Group (EORTC-BTG) were invited to complete a 39-item online questionnaire covering the availability of services, screening, and referral practice. Responses were analyzed descriptively; associations between sociodemographic/clinical variables and screening/referral practice were explored.
Results
In total, 103 participants completed the survey (67% women and 57% medical doctors). Fifteen professions from 23 countries were represented. Various rehabilitation, supportive-, and palliative care services were available yet rated âinadequateâ by 21â37% of participants. Most respondents with a clinical role (nâ
=â
94) declare to screen (78%) and to refer (83%) their patients routinely for physical/cognitive/emotional issues. Survey completers (nâ
=â
103) indicated the main reasons for not screening/referring were (1) lack of suitable referral options (50%); (2) shortage of healthcare professionals (48%); and (3) long waiting lists (42%). To improve service provision, respondents suggested there is a need for education about neuro-oncology-specific issues (75%), improving the availability of services (65%) and staff (64%), developing international guidelines (64%), and strengthening the existing evidence-base for rehabilitation (60%).
Conclusions
Detecting and managing neuro-oncology patientsâ and caregiversâ rehabilitation, supportive,- and palliative care needs can be improved. Better international collaboration can help address healthcare disparities