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Background Atlant Huntington centre of expertise, offers residence for 54 patients with Huntington’s Disease (HD). Generally the attention on sexuality and intimacy issues is focused on problem- or acting out behavior. Hence, little attention is paid to patients personal needs of sexuality and intimacy. Since 2016 an innovation project is performed by a nurse, a psychologist and a nurse scientist, to establish more positive attention to this theme. Aims Structural attention to HD patients’ needs and perception towards sexuality and intimacy when living in a nursing home. Methods Based on a literature review in 2016, a survey amongst 84 nursing staff members took place in 2017. Results Literature review shows that although sexuality and intimacy is seen as part of life, residents in nursing homes experience few opportunities to discuss and experience their personal needs of sexuality and intimacy. Mostly caused by lack of privacy, fear or embarrassment of staff members, lack of knowledge and skills, and a negative attitude of staff towards sexuality and intimacy of residents. The survey (response of 57%) revealed that staff believe that structural attention to sexuality and intimacy is important, and being part of their daily practice. Nevertheless the subject is rarely discussed with HD patients and/or their partner. Also some dilemmas were addressed regarding privacy. Staff members ask for more knowledge and skills to feel well equipped to discuss this topic. Individual, ward and organizational requirements are seen as conditional. Conclusion Atlant believes that good professional care starts with an open ambiance, in which personal needs of sexuality and intimacy (for HD patients) are part of wellbeing and quality of life. Based on the research findings an implementation process has started in 2018, to enhance awareness and structural attention for this subject, e.g. by multidisciplinary training, patient/family/partner information- or discussion meetings. |
