Views of professionals and volunteers in palliative care on patient-centred care: a Q-methodology study in the Netherlands.

BACKGROUND: Patients with palliative care needs, require support with their physical needs, but also with their emotional, spiritual and social needs. Patient-Centred Care (PCC) may help organizations to support these patients according to their needs and so improve the quality of care. PCC has been shown to consist of eight dimensions, including for instance access to care and continuity of care, but these eight dimensions may not be equally important in all care settings and to all patients. Furthermore, the views of those involved in care provision may affect the choices they make concerning care and support to patients. Therefore, insight into how professionals and volunteers involved in palliative care delivery view PCC is important for understanding and improving the quality of care in the palliative sector. METHODS: This study was conducted in the palliative care setting (hospices and hospitals) in the Netherlands. Views on palliative care were investigated using the Q-methodology. Participants were asked to rank 35 statements that represented the eight dimensions of PCC in palliative care settings, and to explain their ranking during a follow-up interview. Ranking data were analysed using by-person factor analysis. Interview materials were used to help interpret the resulting factors. RESULTS: The analysis revealed two distinct viewpoints on PCC in palliative care: 'The patient in the driver seat', particularly emphasizing the importance of patient autonomy during the last phase of life, and 'The patient in the passenger seat', focussed on the value of coordination between professionals, volunteers and patients. CONCLUSIONS: The most distinguishing aspect between views on PCC in palliative care concerned control; a preference for the patient in the driver's seat versus shared decision-making by a team consisting of patient, professionals and volunteers. Different types of care and support may be most adequate to satisfy the different needs and preferences of patients with either of these views.

[Effects of an integrated neighborhood approach on older people's (health-related) quality of life and well-being]. / Effecten van een integrale wijkaanpak genaamd 'Even Buurten' op de (gezondheidsgerelateerde) kwaliteit van leven en welzijn van ouderen.

Integrated neighborhood approaches (INAs) are increasingly advocated to support community-dwelling older people; their effectiveness however remains unknown. We evaluated INA effects on older people's (health-related) quality of life (HRQoL) and well-being in Rotterdam. We used a matched quasi-experimental design comparing INA with "usual" care and support. Community-dwelling people (aged ≥70) and control subjects (n = 186 each) were followed over a one-year period (measurements at baseline, 6 and 12 months). Primary outcomes were HRQoL (EQ-5D-3L, SF-20) and well-being (SPF-IL). The effect of INA was analysed with generalized linear mixed modeling of repeated measurements, using both an "intention to treat" and "as treated" approach. The results indicated that pre-intervention participants were significantly older, more often single, less educated, had lower incomes and more likely to have ≥1 disease than control subjects; they had lower well-being, physical functioning, role functioning, and mental health. No substantial difference in well-being or HRQoL was observed between the intervention and control group after 1 year. The lack of effects of INA highlights the complexity of integrated care and support initiatives.

Effects of an integrated neighborhood approach on older people's (health-related) quality of life and well-being.

BACKGROUND: Integrated neighborhood approaches (INAs) are increasingly advocated to reinforce formal and informal community networks and support community-dwelling older people. They aim to augment older people's self-management abilities and engage informal networks before seeking professional support. INAs' effectiveness however remains unknown. We evaluated an INA's effects on older people's (health-related) quality of life (HRQoL) and well-being in Rotterdam. METHODS: We used a matched quasi-experimental design comparing INA with "usual" care and support. Community-dwelling frail older (70+ years) people and frailty- and gender-matched control subjects (n = 186 each) were followed over a 1-year period (measurements at baseline and 6 and 12 months). Primary outcomes were HRQoL (EQ-5D-3L, SF-20) and well-being [social production function instrument for the level of well-being (SPF-IL)]. The effect of INA was analysed using an "intention to treat" and an "as treated" approach. RESULTS: The results indicated that pre-intervention participants had lower incomes and were significantly older, more often single, less educated and more likely to have ≥1 disease than control subjects; they had lower well-being, physical functioning, role functioning, and mental health. Generalized linear mixed modelling of repeated measurements revealed no substantial difference in well-being or HRQoL between the intervention and control group after 1 year. The small differences we did find in the intention to treat group though were in favour of the control subjects (SF-20 = 6.98, 95 % confidence interval [CI] = 2.45-11.52; SPF-IL = .09, 95 % CI = .01-.17). However, the difference in well-being (SPF-IL) disappeared in the as treated analysis. CONCLUSIONS: The lack of effects of INA highlights the complexity of integrated care and support initiatives. Barriers associated with meeting the complex, varied needs of frail older people, and those related to dynamic political and social climates challenge initiative effectiveness. Trial registration The research was supported with a grant provided by the Netherlands Organisation for Health Research and Development (ZonMw, project number 314030201) as part of the National Care for the Elderly Programme.

The importance of neighborhood social cohesion and social capital for the well being of older adults in the community.

PURPOSE OF THE STUDY: We aimed to investigate whether social capital (obtaining support through indirect ties such as from neighbors) and social cohesion (interdependencies among neighbors) within neighborhoods positively affect the well being of older adults. DESIGN AND METHODS: This cross-sectional study included 945 of 1,440 (66% response rate) independently living older adults (aged ≥70 years) in Rotterdam. We fitted a hierarchical random effects model to account for the hierarchical structure of the study design: 945 older adults (Level 1) nested in 72 neighborhoods (Level 2). RESULTS: Univariate analyses showed that being born in the Netherlands, house ownership, education, income, social capital of individuals, neighborhood security, neighborhood services, neighborhood social capital, and neighborhood social cohesion were significantly related to the well being of older adults. Multilevel analyses showed that social capital of individuals, neighborhood services, neighborhood social capital, and neighborhood social cohesion predicted the well being of older adults. Single and poor older adults reported lower well being than did better off and married older adults. However, the effects of marital status and income were mediated by neighborhood services, social capital, and social cohesion. Neighborhood services, social capital, and social cohesion may act as buffer against the adverse effects of being single and poor on the well being of older adults. IMPLICATIONS: The results of this study support the importance of social capital of individuals, as well as social capital within the neighborhood and social cohesion within the neighborhood for well being of older adults. The well being of older adults may also be enhanced through the improvement of quality of neighborhood services.

The experiences of neighbour, volunteer and professional support-givers in supporting community dwelling older people.

Public policy increasingly emphasises the importance of informal support networks to meet the needs of the ageing population. Evidence for the types of support neighbours provide to older people and how neighbours collaborate with formal support-givers is currently insufficient. Our study therefore explored (i) types of informal neighbour support and (ii) experiences of neighbours, volunteers and professionals providing support. Interviews with nine Dutch neighbour support-givers, five volunteers and 12 professionals were conducted and subjected to latent content analysis. Findings indicate that commitment occurred naturally among neighbours; along with providing instrumental and emotional support, neighbour support seems to be a matter of carefully 'watching over each other'. Neighbour support-givers, however, are often frail themselves and become overburdened; they furthermore lack support from professionals. Neighbour, volunteer and professional support-givers seem to operate in distinct, non-collaborative spheres. Findings suggest that policy-makers should consider the opportunities and limitations of neighbour and volunteer support. Professionals have an indispensable role in providing back-up and accountable, specialised support. They may be trained to adopt a visible and proactive attitude in neighbourhoods to facilitate, cooperate with and mediate between neighbour and volunteer support-givers.