Carers looking after an adult with an intellectual disability and behaviours that challenge: attributions, emotional reactions and helping behaviour
Mooney, Liam Robert
Background: Previous studies have suggested that paid and family carers’ practical responses, or helping behaviour, can influence the development and maintenance of behaviours that challenge. Therefore, it is important that we understand how best to support carers to respond in a helpful way at times of difficult to manage behaviour. This thesis portfolio comprises of two main sections. The first section involves a systematic review which utilises Weiner’s Attributional Model of Helping Behaviour (1985) as a framework to explore attributions and emotions. These factors are proposed to influence paid and family carers’ willingness to help a child or adult with an intellectual disability (ID) and behaviours that challenge. The second section involves an empirical study which aims to explore the qualitative experiences of family carers looking after an adult relative with an ID and behaviours that challenge. There is a lack of knowledge relating to the experience of family carers, with existing research focusing primarily on the experiences of paid carers, using quantitative methodology. Method: The review involved a thorough search of online databases and reference lists to identify relevant articles, as defined by predetermined eligibility criteria. Fifteen articles were identified, which were synthesised and evaluated using an adapted quality rating scale. The empirical study involved conducting semi-structured interviews with nine family carers about their lived experience of caring for an adult relative with an ID and behaviours that challenge. Interviews were recorded, transcribed and analysed using interpretive phenomenological analysis (IPA). Results: The systematic review found evidence that emotions were associated with helping behaviour, however evidence that emotions acted as a mediating variable between attributions and helping behaviour was inconclusive. There was evidence of an association between carer’s optimism that the behaviour will change and the likelihood of offering help to a person, however optimism for change was not measured across studies. From the empirical study analysis, five subordinate themes emerged from the interviews; ‘searching for the reason’, ‘negative emotions and behaviours that challenge’, ‘tag-team approach – stronger together, ‘limited support’ and ‘impact of caring’. Included in this were seven subthemes. Discussion: Studies included in the review provided, at best, partial support for Weiner’s model and offered limited understanding of carer’s responses to behaviours that challenge. A number of theoretical and methodological limitations of Weiner’s model and of the studies that have explored the model are described. As a result, these findings are not generalisable to real-life caregiving situations, particularly to those looking after an adult relative with an ID. This review found a lack of studies related to family carers, despite this being a population that also provide a significant amount of care and support at times of behaviours that challenge. Study limitations, implications for clinical practice and recommendations for future research are discussed.