Ann Karin Helgesen

Ann Karin Helgesen

Østfold University College, Norway

Title: User participation in everyday decision-making in special care units for persons with dementia


Ann Karin Helgesen works as a teacher and researcher at the Østfold University College in Norway. She has 16 years’ experience as a registered geriatric nurse, most of them with elderly care in general and dementia care in special. Her Ph.D. degree explored patient/user participation in everyday life in special units for persons with dementia.


Statement of the Problem: Studies about how user participation appears in the context of special care units for persons with dementia are lacking. The purpose of this study was to explore user participation in everyday decision making for persons with dementia living in special care units in nursing homes.
Methodology & Theoretical Orientation: The study has an explorative design. Grounded theory was chosen as method. Data collection was carried out by means of open observations and additional conversations with residents and personnel. Simultaneously, data analysis was performed with open, axial and selective coding.
Findings: The findings showed that user participation concerned ‘A matter of presence’ as the core category. The other categories described as ‘presence of personnel’ and ‘presence of residents’, were strongly connected to the core category as well as to each other. Presence of personnel comprised three levels; being there in body, which required physical presence; being  there in mind, which required presence with all senses based on knowledge and competence; and being there in morality which was understood as being fully present, as it was based on humanistic values and included the two other levels. Presence of
residents comprised ‘ability and wish’ and ‘adaptation’. Organizational conditions concerning leadership, amount of personnel and routines as well as housing conditions concerning architecture and shared accommodation could stimulate or hinder user participation.
Conclusions & Significance: The study highlighted the great impact of the personnel’s presence in body, mind and morality on the participation capacity of the residents. The great importance of the nurse leaders was stressed, as they were responsible for organizational issues and served as role models.
Recent Publications:
  1. Boer M, Hertogh C, Droes RM, Riphagen I, Jonker C, Eefsting J  (2007)  Suffering  from  dementia  –  the  patient’s  perspective:  a review of the literature. International Psychogeriatrics 19, 1021–1039.
  2. Cahill  J  (1998)  Patient  participation  –  a  review  of  the  literature. Journal of Clinical Nursing 7, 119–128.
  3. Helgesen AK (2013) Patient participation in everyday life in special care units for persons with dementia. Faculty of Social and Life Sciences, Karlstad University Studies. (Doctoral dissertation).
  4. Menne HL, Whitlatch CJ (2007) Decision-making involvement of individuals with dementia. The Gerontologist 47, 810–819.
  5. Wilkinson H (2001) Empowerment and decision-making for people with dementia: the use of legal interventions in Scotland. Ageing & Mental Health, 5, 322–328. 

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