BackgroundMany countries have passed laws giving patients the right to participate in decisions about health care. People with dementia cannot be assumed to be incapable of making decisions on their diagnosis alone as they may have retained cognitive abilities.The purpose of this study was to gain a better understanding of how persons with dementia participated in making decisions about health care and how their family carers and professional caregivers influenced decision making.MethodsThis Norwegian study had a qualitative multi-case design. The triad in each of the ten cases consisted of the person with dementia, the family carer and the professional caregiver, in all 30 participants. Inclusion criteria for the persons with dementia were: (1) 67 years or older (2) diagnosed with dementia (3) Clinical Dementia Rating score 2, moderate dementia; (3) able to communicate verbally. The family carers and professional caregivers were then asked to participate.A semi-structured interview guide was used in interviews with family carers and professional caregivers. Field notes were written after participant observation of interactions between persons with dementia and professional caregivers during morning care or activities at a day centre. How the professional caregivers facilitated decision making was the focus of the observations that varied in length from 30 to 90 minutes. The data were analyzed using framework analysis combined with a hermeneutical interpretive approach.ResultsProfessional caregivers based their assessment of mental competence on experience and not on standardized tests. Persons with dementia demonstrated variability in how they participated in decision making. Pseudo-autonomous decision making and delegating decision making were new categories that emerged. Autonomous decision making did occur but shared decision making was the most typical pattern. Reduced mental capacity, lack of available choices or not being given the opportunity to participate led to non-involvement. Not all decisions were based on logic; personal values and relationships were also considered.ConclusionsPersons with moderate dementia demonstrated variability in how they participated in decision making. Optimal involvement was facilitated by positioning them as capable of influencing decisions, assessing decision-specific competence, clarifying values and understanding the significance of relationships and context.

No abstract

Shared decision making (SDM) is regarded as an ideal in chronic illness care but is difficult to implement in practice. Communication and reflection play an important role and need further investigation. Using grounded theory, we studied patient-provider interaction in a difficult and advanced area: managing poorly controlled diabetes. A person-centered communication and reflection model was developed, identifying SDM in chronic care to be a question of professionals gaining insight into patients' decisions, rather than the opposite. The model reveals important choices in communication and reflection, which were decisive for whether SDM was achieved or not. SDM involved co-creating person-centered knowledge: concrete evidence which empowered patients and professionals in problem solving. Although further testing is required, the general tenets of the model are expected to be applicable across chronic conditions. Findings indicate that SDM in chronic illness care requires innovation in current approaches to decision making and problem solving.

Although fatigue is a common complaint after stroke, relatively little is known about how poststroke fatigue is experienced and what its related factors are. An in-depth understanding is necessary to develop effective and patient-centered poststroke rehabilitation programs. This review was undertaken to provide a comprehensive synthesis of knowledge from the literature concerning the description, definition, and measurement of fatigue and its relationship to sociodemographic and clinical factors. A search in PubMed, CINAHL, EMBASE, and PsychInfo was performed using "stroke" or "cerebrovascular accident" as medical subject headings in combination with "fatigue" as a key word. Descriptions of fatigue revealed multiple dimensions of the phenomenon. Although no specific theoretical definition of fatigue as a poststroke condition was found, a case definition has recently been published to be used as a tool to determine the presence of fatigue in poststroke patients. Poststroke fatigue is most frequently measured by using the general fatigue scales such as the Fatigue Severity Scale and a Fatigue Visual Analogue Scale, as there is no scale developed to measure poststroke fatigue specifically. Age, sex, living conditions, and personality were associated with poststroke fatigue, albeit with some conflicting findings. Conflicting results also were found in the relationships between fatigue and stroke-related characteristics such as stroke location/type, the number of strokes, and neurological deficits. There is an indication that prestroke and poststroke fatigue are related. Possible antecedent components identified are personal factors, biomarkers, stroke characteristics, prestroke fatigue, and comorbidity. As knowledge regarding poststroke fatigue remains limited, there is a need to continue empirical research with various theoretical orientations.