Housing Matters for People with Parkinson´s disease. Accessibility, Meaning, Control and Activities of Daily Living

Abstract: Parkinson´s disease (PD) is one of the most common neurological diseases with both motor and non-motor symptoms that can be perceived as difficult to control despite medical treatment. This leads to several consequences in everyday life for example difficulties in activities of daily living (ADL), sometimes already at diagnosis. Therefore, rehabilitation is important to manage the consequences of the disease and to improve health. Furthermore, ADL performance is dependent on the environment one interacts with, and housing is one environment associated with different health outcomes in the ageing population. However, housing matters constitutes a knowledge gap for people with PD. Therefore, the overall aim of this thesis was to increase the knowledge of housing matters for people with PD living in ordinary housing in Sweden, covering both objective and perceived aspect of housing. Furthermore, psychometric evaluations of instruments capturing perceived housing were performed. This thesis has a quantitative approach and is based on baseline and three-year follow-up data from the longitudinal study “Home and health in people ageing with PD” (HHPD). The data collection was done through questionnaires and clinical assessments at home visits. Study I was a three-year cohort study that included 138 participants and explored environmental barriers and housing accessibility for people with PD. Both parametric and non-parametric statistics were used to explore change over time. The results show that the top ten environmental barriers that generated accessibility problems were largely the same over the three years, although with notable changes in order and magnitude. Barriers in hygiene areas, kitchens and entrances were ranked at the top at baseline, while a barrier in the exterior surrounding generated the most accessibility problems after three years. Studies II and III were cross-sectional and evaluated psychometric properties of the Meaning of Home Questionnaire (MOH) and external Housing-Related Control Belief Questionnaire (HCQ) for 145 participants each. Data quality, structural validity, construct validity, scaling assumptions, floor- and ceiling effects and internal consistency reliability were evaluated. The results of both studies suggested revised versions of the instruments based on the evaluation of structural validity. Further evaluations showed that data quality was high and construct validity was largely supported for both instruments. Also, internal consistency and homogeneity of the instruments surpassed the recommended values in both studies. Study IV was a cohort study including 154 participants at baseline and at follow-up, that explored the direction of the relationship between external housing-related control beliefs and ADL. Linear and logistic regression analyses were used. The results suggest that difficulties in ADL lead to higher external control beliefs related to the home, while the other direction could not be confirmed. This finding regarding people with PD is contrary to theories in environmental gerontology.The findings from this thesis can be applied in several ways. The knowledge of accessibility problems can be used in individual rehabilitation to enable more farsighted housing adaptations for people with PD. However, not all problems can be efficiently solved through individual rehabilitation, rather some should be addressed on the societal level to meet some of the housing needs for people with PD. The psychometric evaluation suggested that the revised versions of MOH and external HCQ are reliable and valid for use among people with PD, which is a prerequisite to enable high quality research on perceived housing. The novel findings that difficulties in ADL lead to higher external control beliefs related to the home, add to the overall understanding of housing and health interactions for people with PD.