A person-centered approach to study intimacy and sexuality in residential care facility (RCF) clients with dementia: Methodological considerations and a guide to study design

Issue title: Special Section: Neurosexuality: A Transdisciplinary Approach to Sexuality in Neurorehabilitation

Guest editors: Alexander Moreno, Caron Gan and Nathan D. Zasler

Article type: Research Article

Authors: Roelofs, Tineke S.M.^{a; *} | Luijkx, Katrien G.^b | Embregts, Petri J.C.M.^b

Affiliations: [a] Schakelring, Department of Psychology, Waalwijk, The Netherlands | [b] School of Social and Behavioral Sciences, Department of Tranzo, Tilburg University, Tilburg, The Netherlands

Correspondence: [*] Address for correspondence: Tineke S.M. Roelofs, Schakelring, Department of psychology, Eikendonklaan 2, 5143 NG Waalwijk, The Netherlands. E-mail: [email protected].

Abstract: BACKGROUND:The person-centered perspective of residential care facility (RCF) residents with dementia with regard to their intimate and sexual lives is largely neglected in research. OBJECTIVE:We aim to provide methodological considerations and reflections on a performed qualitative study. Recommendations and a guide to study design are provided to inform and encourage future research on the inclusion of people with dementia as participants. METHODS:Methodological recommendations and reflections are described in chronological order of the procedure. Fragments of interviews are included for further illustration and clarification. RESULTS:Considering preparation, close involvement of clinical practice, and extensive deliberation regarding study design tended to be important. Considering procedure, investment in contacts with clinical practice and authorized representatives; an introduction meeting; person-centered inclusion and consent; profound skills in interviewing participants with dementia; and flexibility in data collection were proven of importance. Considering data analysis and study quality, including field notes and aiming at a balance between study quality and practicability to enhance study ‘rigor’ were found important. CONCLUSION:Including the person-centered perspective in research on intimacy and sexuality of RCF residents with dementia, is challenging and takes a flexible and creative approach. It is, however, worthwhile to close the gap in literature.

Keywords: Neurosexuality, dementia, person-centered, guide to study design, methodology

DOI: 10.3233/NRE-172205

Journal: NeuroRehabilitation, vol. 41, no. 2, pp. 359-373, 2017