First Diagnosis of Severe Mental and Physical Disability: A Study of Doctor–Parent Communication

Abstract

This study investigates factors associated with satisfaction with medical communication at the time of diagnosis of a child's severe mental or physical disability. Two competing social psychological models that have been used to account for parent patient satisfaction are tested: Korsch's (1968) affective model and Ley's (1977) cognitive model. One hundred and sixty six mothers of children with severe learning disabilities were questioned about the time when their child's disability was first diagnosed. Measures included the child's age when diagnosis was made, the length of time parents had been anxious, and how satisfied they were with the way they were told the diagnosis. They were asked to rate the doctor's affective behaviour and their understanding and memory of the information they received. Fifty-eight per cent of parents reported dissatisfaction with the communication. Stepwise multiple regression analysis showed that Korsch's affective scale was much the strongest predictor, entering the equation first, and explaining 35.7% of the variance in satisfaction. Ley's cognitive scale entered second, explaining a further 1.4% of the variance. Further analysis including the other predictors found that six predictors explained 40% of the variance. The implications of the findings for the training of medical staff are discussed.

A qualitative exploration of mothers’ and fathers’ experiences of having a child with Klinefelter syndrome and the process of reaching this diagnosis

“…However, previous research has demonstrated that despite the length of time since diagnosis for some parents, their recollections of the process of diagnosis were very strong; these have been described as 'flash bulb memories' 40 and noted in other studies. 41,42 All of the mothers who were interviewed were recruited through a pre-existing database.…”

‘Oh, those therapists will become your best friends’: maternal satisfaction with clinics providing physical, occupational and speech therapy services to children with disabilities

“…The diagnosing physician is almost universally seen by parents as impossibly distant from their emotional reality (Featherstone 1980, Green and Murton 1996, Quine and Rutter 1994. In our case, Amanda's`life sentence' was pronounced by a paediatric neurologist we had never seen before in an office visit lasting less than 20 minutes and punctuated by several routine telephone calls and messages regarding other patients.…”

“…Like mothers included in previous studies (Featherstone 1980, Quine andRutter 1994), however, many report feeling that he/she was cold, uncaring and indifferent to the positive attributes of their children.…”

“…While some inconsistencies in research findings exist, it is generally agreed that among parents of children with chronic illness and disability, social factors such as respect, support, information exchange, partnership and the ability to develop consistent, long-term relationships play a key role in parent satisfaction (Baine et al 1995, King et al 1996, Lessing et al 1992, Lie et al 1995, Marchetti et al 1995Quine and Rutter 1994, Speller 1996, Stallard and Hutchison 1995, Williams et al 1995. In the past, literature on both adult patient and parental satisfaction has focused primarily on satisfaction with the attitudes and behaviours of individual practitioners ± mainly physicians.…”

The evaluation of a screening tool for children with an intellectual disability: The Child and Adolescent Intellectual Disability Screening Questionnaire

“…A number of factors may influence the timing of the diagnosis, including: whether the diagnosis relates to a specific syndrome or is the less specific diagnosis of 'intellectual disability' (Quine & Rutter, 1994); whether relevant professionals such as education (Rae, McKenzie, & Murray, 2011) and primary care staff (McKenzie, Murray, Matheson, & McCaskie, 2000) have sufficient knowledge of what an intellectual disability is to recognise that a child may have one, and failure of legislation to specifically highlight the needs of this group of children (e.g. Maulik & Darmstadt, 2007;Scottish Government, 2004).…”