Navigating Towards a Self- determined Daily Life in Old Age Experiences, Instrument Evaluation and Explanatory Factors

Aim: The overall aim of this thesis was to explore self-determination in the context of community-dwelling older persons with different degrees of dependence in daily activities. Methods: Using a qualitative, grounded design, study I explored how people 80 years and older experienced their self-determination when developing dependence in daily activities. Study II employed a qualitative and quantitative design where the validity of the questionnaire Impact on Participation and Autonomy (IPA-S) was tested using focus group discussions and individual interviews. The participants were aged 70 years and older. The focus groups were followed by a reliability test-retest of the adjusted version (IPA-O) on persons in the same age. Study III and IV applied an exploratory, cross-sectional design where two sets of data were combined, resulting in a sample of persons aged 80 years and older. Perceived self-determination in daily life was explored in relation to degree of dependence in daily activities (study III) and in relation to a set of explanatory factors (study IV). Results: The results showed that self-determination was experienced as constantly shifting between self-governing and being governed by the ageing body or by other persons. This shift gave rise to a struggle against the ageing body and a need to constantly guard one’s own independence. The relationship had an impact on the person’s possibilities to make decisions; that is, decision-making was relational (study I). The validity test showed that the items within the IPA-S were important and relevant, but the questionnaire was too extensive and focused on the executional part of the activities. The IPA-S was adjusted to a version entitled IPA-O (-Older persons) consisting of fewer items with emphasises on the decisional part. The reliability test-retest step showed that 15 of the 22 items within the IPA-O had high agreement and six items had moderate agreement. One item showed low agreement between the test and retest (study II). People dependent in activities of daily living (ADL) showed a general pattern of perceiving reduced self-determination in daily life. Perceptions of reduced self-determination were most pronounced among people dependent in personal activities of daily living (P-ADL) (study III). However, the association between dependence in ADL and reduced self-determination was not statistically significant. The final regression model showed that the explanatory factors of high education, frailty, poor self-rated health, unsatisfaction with physical health, and receiving help from public home care service were significantly associated with perceiving reduced selfdetermination (study IV). Conclusions: Being dependent in daily activities occasionally meant being governed by the ageing body or by others. Reduced perceptions of selfdetermination in daily life were associated with both internal and external factors. Exercising self-determination in old age was directly related to the relationship between the persons receiving help and the persons providing help. Therefore, healthcare professionals should enable trough navigate towards a more self-determined daily life in old age. A first step in this direction could be to conduct a conversation about self-determination based on the IPA-O, a psychometrically tested and adjusted instrument designed specifically for older people. Acknowledging human capabilities and creating relationships based on partnership could enhance the older person’s selfdetermination.