This study provides detailed data on the current characteristics, perceptions and outcomes of 45 young people with cystic fi brosis (CF) as they transition into adulthood. Although many had severe disease, they generally coped well, found attendance at a transition clinic helpful and welcomed the increased independence of an adult healthcare environment. Levels of psychological distress were low with only 15.6% having anxiety and 6.7% depression. The main psychological coping strategy used was optimistic acceptance. Overall, most remained stable after transfer but 33% had some decline in lung function and 9% in nutritional status, requiring intensification of treatment. They had high levels of satisfaction with their relationships and life situations and 76% were in employment or education. These results are encouraging and as life expectancy improves, young adults with CF are coping well with transition into adulthood.
The psychosocial benefits of organised community sports programmes far outweigh the physical health benefits. Careful consideration must be given to where on a treatment and rehabilitation pathway non-traditional therapeutic interventions such as sports programmes are offered as an adjunct to specific risk reduction interventions for people with LD in secure settings.
Purpose
Social media use in autistic people has been identified as a potential avenue for less pressured social contact. Given shifts towards online socialisation, this study aims to systematically review the available literature on how autistic people experience and use social media.
Design/methodology/approach
A systematic review was carried out using the preferred reporting items for systematic reviews and meta-analyses system, with relevant literature reviewed and synthesised using a narrative approach. Inclusion criteria included adults and/or adolescents as the sole sample, a focus on autism and social media use as the sole/main topic.
Findings
A total of 1,278 research studies were initially identified; following screening, 15 papers were reviewed. Studies demonstrated some support for the positive role social media can play and presented its use as a smart adaptation for the challenges of neurotypical socialising. For autistic people, social media may provide a balance between meeting the need to be connected to people without the pressure of managing aspects, such as tone of voice or body language.
Research limitations/implications
Most studies were questionnaire-based with substantial threats to validity. Samples were self-selecting, with autism status not always confirmed. Individual studies used a broad approach to the definition of social media, including online gaming and other online activities, precluding firm conclusions being made.
Practical implications
There may be a Goldilocks “just right” level of social media contact that could maximise connectedness to others without impacting negatively on mental health, offline relationships and activities of daily living.
Originality/value
This paper presents a novel account of research from case studies and larger scale questionnaire studies.
The broadcast of the Panorama TV documentary featuring Winterbourne View (BBC, 2011) highlighted abusive practice towards people with an intellectual disability and/or autistic spectrum disorder in an inpatient service located in southern England. Criminal convictions for staff members followed (Hill, 2012), as did national condemnation (Morris, 2011) which led to political pressure and a subsequent inquiry into the care at this service (Flynn & Citarella, 2012). The resulting enquiry revealed deficiencies in safeguarding practice, commissioning of care and service regulation with people detained in questionable out of
IntroductionTransition is a process that addresses the medical, psychosocial and vocational needs of young adults, and it is a crucial stage for patients with CF.MethodsPatients who transferred to the adult service via a transition clinic within the last 5 years underwent an interview with a psychologist using a questionnaire of demographic data, their experience of transition, their concerns and the effect of CF on their lifestyle. They completed the Hospital Anxiety Depression Scale (HADS) and the Ways of Coping Scale. Clinical data, complications and outcomes were noted at transfer and one year later.Results45 patients (27 men) participated; mean age at transfer was 17 (range 15–21) years and at interview was 20.7 (17–24) years; 25 (53%) had chronic Pseudomonas infection, 7 (15.5%) were receiving gastrostomy feeding, 9 had diabetes, one had had liver transplantation and one had undergone termination of pregnancy. At the transition clinic 94% attended with a parent but after transfer 33% attended alone and 18% with a partner; 87% felt that the timing of transition was correct and 80% found the transition clinic helpful. Self-reported adherence to treatment declined in 18% and improved in 24%. Life satisfaction was high with 74% reporting that CF had no effect on their social lives, but 52% felt it impacted on work or studies, although 76% were in employment or education. Mean FEV1 remained stable at 76.6 (26.4–119.6)% at transfer and 75.4 (19–111)% one year later, but varied with 15 patients (33%) having a deterioration of >5% and 8 (18%) improving by >5%. Mean BMI changed from 20.8 (16.5–29.7) to 21.2 (17.3–29.2); 11 patients (24%) improved by >1 kg/m2, 4 (9%) deteriorated by >1 kg/m2. Psychological distress was low with 7 (15.6%) having anxiety and 3 (6.7%) depression; 84.4% used ‘optimistic acceptance’ as their main way of coping, 8.8% used ‘avoidance’ 2.2% ‘distraction’, and 2.2% ‘hopefulness’.ConclusionYoung people with CF still face daunting problems but are functioning well. There is a need for close monitoring during transition to provide treatment and support to those showing clinical deterioration.ReferenceAbott J. Disability Rehabilitation 2001;23:315.
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