[show abstract][hide abstract] ABSTRACT: To describe unmet care demands as perceived by stroke patients and to identify sociodemographic and health characteristics associated with these unmet demands to investigate the appropriateness of health care.
Sample of patients who participated in a multicentre study (23 hospitals) on quality of care in The Netherlands.
Non-institutionalised patients who had been admitted to hospital because of stroke. Patients were interviewed six months (n = 382) and five years (n = 224) after stroke.
Six months after stroke data were collected on: (a) sociodemographic characteristics in terms of age, sex, living arrangement, educational level, and regional level of urbanisation; (b) health characteristics in terms of cognitive function, disability, emotional distress, and general health perception; (c) utilisation of professional care; and (d) unmet care demands as perceived by patients. Data on utilisation of care and unmet demands were also collected five years after stroke. Data were collected from June 1991 until December 1996.
The percentage of unmet care demands was highest at six months after stroke (n = 120, 31%). Multiple logistic regression analyses showed that disabled patients were more likely to be unmet demanders for therapy, (I)ADL care and aids (range odds ratio (OR) = 3.5 to 7.9) than to be no demanders, whereas emotionally distressed patients were more likely to be unmet demanders for psychosocial support (OR = 3.8). When comparing unmet demanders with care users only for (instrumental) activities of daily living (I)ADL care differences were found: men (OR = 3.8), disabled patients (OR = 3.0), and emotionally distressed patients (OR = 6.5) were more likely to be users.
Patients who perceived an unmet care demand do appear genuinely to have an unmet care need as supported by assessment of their health status: (a) types of unmet care demands correspond with types of health problems and (b) unmet demanders were in general unhealthier than no demanders and more comparable with care users for health characteristics.
To improve an equitable distribution of healthcare services, guidelines for indicating and allocating health care have to be developed and should be based on scientific evidence and consensus meetings including professionals' and patients' perspectives.
[show abstract][hide abstract] ABSTRACT: Few data are available on the specific caregiving-related problems of stroke patients' caregivers and factors that influence the burden of these caregivers. The aim of this study was to describe the level and specific nature of the burden of caregiving as experienced by stroke patients' partners and to estimate the relative contribution of patient and partner characteristics to the presence of partners' burden.
As part of a multicenter study on quality of care, burden of caregiving was assessed in 115 partners at 3 years after stroke. Explanatory factors of burden were studied in terms of (1) characteristics of patients (sociodemographic status, severity, type, and localization of stroke, disability, handicap, and unmet care demands) and (2) characteristics of partners (age, sex, disability, quality of life, loneliness, amount of care provided, and unmet care demands).
Partners of stroke patients perceived most caregiving burden in terms of feelings of heavy responsibility, uncertainty about patients' care needs, constant worries, restraints in social life, and feelings that patients rely on only their care. Multiple regression analysis revealed that a higher level of burden could partly be explained by patients' disability (R2 = 14%), but primarily by partners' characteristics in terms of emotional distress (R2 = 16%), loneliness (R2 = 6%), disability (R2 = 3%), amount of informal care provided (R2 = 2%), unmet demands for psychosocial care (R2 = 4%), and unmet demands for assistance in activities of daily living (R2 = 2%).
Higher levels of burden are primarily related to partners' emotional distress and less to the amount of care they provided, or to patients' characteristics. Sharing responsibilities, helping to clarify the patients' needs, and getting occasional relief of caregiving may be important in the support of caregivers.
[show abstract][hide abstract] ABSTRACT: The burden of caregiving can be harmful to both carers' and patients' functional health, but a specific instrument to assess the burden of caregiving as experienced by carers of stroke patients is not yet available. The Sense of Competence Questionnaire (SCQ), reliable and valid among caregivers of dementia patients, was evaluated on its metric properties in a population of partners of stroke patients.
As part of a multicenter study on quality of care, SCQ burden scores of partners and functional health of patients were assessed 6 months after stroke (group A; n=166). In this study group, the reliability in terms of homogeneity, the construct validity, and the clinical validity of the SCQ were evaluated. The test-retest reliability was assessed in a separate group (group B; n=47). The feasibility was examined in both study groups.
The reliability of the total SCQ score was good (Chronbach's alpha coefficient=0.83; intraclass correlation coefficient=0.93). Statistical support for construct validity was shown by principal-components analysis. Clinical validity was supported by the association between higher SCQ burden scores and patients' impaired functional health: cognitive function (P=.03), disability (P=.10), handicap (P<.01), and quality of life (P=.02).
The SCQ is a reliable and valid instrument for assessing burden of caregiving as experienced by partners of stroke patients. It is suitable for use in cross-sectional stroke studies and may help to identify partners at risk for high levels of burden and caregiving-related problems.
[show abstract][hide abstract] ABSTRACT: To evaluate stroke patients' satisfaction with care received and to identify characteristics of patients and care which are associated with patients' dissatisfaction.
Cross sectional study.
Sample of patients who participated in a multicentre study on quality of care in 23 hospitals in the Netherlands.
327 non-institutionalised patients who had been in hospital six months before because of stroke.
Data were collected on (a) characteristics of patients: socio-demographic status, cognitive function (mini mental state examination), disability (Barthel index), handicap (Rankin scale), emotional distress (emotional behavior subscale of the sickness impact profile) and health perception; (b) characteristics of care: use of various types of formal care after stroke, unmet care demands perceived by patients, unmet care demands confirmed by their general practitioners, continuity of care, and secondary prevention, and (c) patients' satisfaction with care received.
40% of the study sample were dissatisfied with at least one type of care received. Multivariate analyses showed that unmet care demands perceived by patients (odds ratio (OR) 3.2, 95% confidence interval (95% CI) 1.8-5.7) and emotional distress (OR 1.8, 95% CI 1.1-3.0) were the main variable associated with dissatisfaction.
Patients' satisfaction was primarily associated with emotional distress and unmet care demands perceived by patients. No association was found between patients' satisfaction on the one hand and continuity of care or secondary prevention on the other; two care characteristics that are broadly accepted by professional care givers as important indicators of quality of long term care after stroke.
In view of these findings discussion should take place about the relative weight that should be given to patients' satisfaction as an indicator of quality of care, compared with other quality indicators such as continuity of care and technical competence. More research is needed to find which dimensions of quality care are considered the most important by stroke patients and professional care givers.