Degree of autonomy in making independent choices by frail older people with intellectual disabilities in a care home: A descriptive ethnographic study.

BACKGROUND: We aimed to gain more insight into autonomy of older people with intellectual disabilities in a residential care facility in making choices. METHODS: We performed a descriptive ethnographic study in a residential facility in the Netherlands for 22 persons, aged 54-89 years, with mild to moderate intellectual disabilities (IQ <70) and low social-emotional development levels. We combined participant observations and qualitative interviews. RESULTS: Based on the observations, the main themes for the interviews were established. Residents indicated to be free to make independent choices, and experienced less autonomy with regard to health issues and finances. Support staff stated that residents' level of autonomy depends on residents' characteristics, needs, preferences, the attitude of support staff and the rules of the care institution. CONCLUSION: Residents had a clear view on their autonomy in making independent choices. Support staff is mindful of preserving residents' autonomy, which in practice is limited.

Challenges in self-management of persons living with advanced cancer: An exploratory, in-depth interview study.

OBJECTIVE: To obtain insight in self-management challenges of persons with advanced cancer and factors that influence their self-management. METHODS: Exploratory study among persons with advanced cancer. We conducted in-depth interviews and performed an inductive thematic analysis, using open, axial and selective coding. RESULTS: We interviewed 33 persons with advanced cancer. Four self-management challenges were identified: (1) Dealing with physical and psychological symptoms and problems. (2) Navigating the illness trajectory, including management of clinical appointments and treatment regimens, end-of-life planning life and 'maintaining normality'. (3) Managing relations with healthcare professionals, including contributing experiential knowledge to medical decision-making. (4) Navigating changes in the social environment. Some participants responded proactively to these challenges, for example, by actively searching for information to obtain an extensive understanding of their illness and (re)scheduling medical appointments for a better fit in their agenda. Self-management strategies seemed to be influenced by patients' personality, life history, moment in the illness trajectory and the social environment. CONCLUSION: Self-management challenges of persons with advanced cancer are based largely outside the professional care setting. Self-management strategies in response to these challenges are typically aimed at maintaining a normal life. Self-management support should be tailored to patients' needs and part of trustful partnerships with patients and relatives.

Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase.

BACKGROUND: Little is known about how to involve people with intellectual disabilities in making decisions about treatment and care in their palliative phase. We aimed to reach a consensus about a shared decision-making (SDM) conversation aid for people with intellectual disabilities, relatives, and healthcare professionals. METHODS: In a Delphi process, an expert panel of 11 people with intellectual disabilities, 14 relatives, and 65 healthcare professionals completed online questionnaires about the relevance and feasibility of a draft conversation aid. RESULTS: In Round 1, components were rated as (very) relevant by 70-98% of participants (M = 87%). In Round 2, after amending the aid in response to feedback, relevance ratings were 67-97% (M = 90%) and feasibility ratings 66-86% (M = 77%). The final version consists of four themes: who are you; illness/end-of-life; making decisions; and evaluating the decision. CONCLUSION: The consensus-based conversation aid is considered sufficiently relevant and feasible to be implemented in practice.