There is increasing international interest in intensive home-based behavioral intervention for children with autism. In the present study, 141 UK parents conducting such interventions completed a questionnaire addressing issues of stress, coping, and support. Regression analyses showed that parents' stress levels were predicted mainly by psychological rather than demographic variables. In particular, adaptive coping strategies, informal social support sources, and beliefs about the efficacy of the intervention were associated with lower reported stress and higher levels of autism symptomatology were associated with higher reported stress. There was also evidence that the use of Passive Appraisal coping and beliefs about the efficacy of the interventions moderated the effects of autism symptomatology on parents' pessimism. Implications of these findings for future research and for the support of families engaged in intensive home-based behavioral intervention are discussed.
The practical implications of these results for families and for services supporting families engaged in intensive early behavioural intervention are discussed. In addition, more general implications for the designers of behavioural intervention programmes are identified.
Inflammatory bowel disease (IBD) consists of Crohn’s disease and ulcerative colitis, chronic conditions involving inflammation and ulceration of the gastrointestinal tract. Individuals with IBD may be susceptible to experiencing health-related stigma: experienced, perceived, or internalised social exclusion, rejection, blame, or devaluation resulting from negative social judgements based on the disease. This qualitative research synthesis draws together findings from 38 studies describing lived experiences to develop a unified interpretative account of the experience of stigma in IBD. Analysis developed two categories: ‘The IBD journey’ explores the dynamic ways in which having IBD impacted on individuals’ self-identity and ‘a need to be understood’ examines the tension between wanting to be understood whilst feeling their true experiences needed to be hidden from or were misjudged by the social sphere. The overarching concept ‘feeling of otherness’ highlights that, rather than a static, binary experience, individuals moved across a continuum ranging from the excluding experience of feeling stigmatised and othered, to the inclusive experience of integration. Individuals fluctuated along this continuum across different physical, social, and health contexts. Psychological adjustment to IBD, drawing on experience of adaptive coping, and reconnecting with valued others through illness disclosure strengthened stigma resistance during more challenging times.
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