RESUMEN
BACKGROUND: One-third to half of people with intellectual disabilities suffer from chronic constipation (defined as two or fewer bowel movements weekly or taking regular laxatives three or more times weekly), a cause of significant morbidity and premature mortality. Research on risk factors associated with constipation is limited. AIMS: To enumerate risk factors associated with constipation in this population. METHOD: A questionnaire was developed on possible risk factors for constipation. The questionnaire was sent to carers of people with intellectual disabilities on the case-loads of four specialist intellectual disability services in England. Data analysis focused on descriptively summarising responses and comparing those reported with and without constipation. RESULTS: Of the 181 people with intellectual disabilities whose carers returned the questionnaire, 42% reported chronic constipation. Constipation was significantly associated with more severe intellectual disability, dysphagia, cerebral palsy, poor mobility, polypharmacy including antipsychotics and antiseizure medication, and the need for greater toileting support. There were no associations with age or gender. CONCLUSIONS: People with intellectual disabilities may be more vulnerable to chronic constipation if they are more severely intellectually disabled. The associations of constipation with dysphagia, cerebral palsy, poor mobility and the need for greater toileting support suggests people with intellectual disabilities with significant physical disabilities are more at risk. People with the above disabilities need closer monitoring of their bowel health. Reducing medication to the minimum necessary may reduce the risk of constipation and is a modifiable risk factor that it is important to monitor. By screening patients using the constipation questionnaire, individualised bowel care plans could be implemented.
RESUMEN
PURPOSE: The aims is to consider the political and ethical challenges involved in conducting ethnographic managerial/organisational behaviour research within the highly regulated health and social care context, in light of the emergence of more stringent "ethical approval" policies and requirements set by Local Research Ethics Committees in the United Kingdom. In the attempt and requirement to protect "vulnerable" employees, this paper aims to present an unintended paradox of consequences when participants voluntarily revealed themselves. DESIGN/METHODOLOGY/APPROACH: The authors briefly review literature on research ethics and present an understanding of the ethical regulations currently existing within the British National Health Service. Within an ethnographic case study exploring the psychological contract, the authors consider the issues that arose during one stage of data collection: a qualitative questionnaire survey with 13 participants, including members of the lead author's team. Incorporating excerpts from the researcher's reflexive journal, the paper exposes the struggles of being an "insider" researcher and the tensions this raises for data analysis when participants voluntarily revealed themselves. FINDINGS: Ethnography is at "risk" within health and social care and ethnographic "managerial" research is likely to be unduly restricted and potentially threatened. The evidence suggests that some employees either did not wish to be protected or, conversely, felt compelled to reveal their identities, raising questions of their motivation and creating a paradox of unintended consequences. ORIGINALITY/VALUE: This paper offers an insight into the challenges of conducting nurse-managerial ethnography in compliance with ethical guidelines, yet disrupted by participants. The findings will be useful to other nurse-researchers attempting to conduct insider research.
