Older people's preferences for involvement in their own care: A qualitative study in primary health care in 11 European countries

Bastiaens, Hilde; Royen, Paul Van; Pavlič, Danica Rotar; Raposo, Vítor; Baker, Richard

doi:10.1016/j.pec.2007.03.025

Cited by 237 publications

(267 citation statements)

References 31 publications

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“…In our study, carers highlighted the value of the relationship with the worker and the older person as well as the importance of social contacts for the older person. This aligns with research exploring what consumers want from services from both the carer perspective (Innes et al, 2011;Innes et al, 2014;Orpin et al, 2014) and service user perspective (Bastiaens, Van Royen, Pavlic, Raposo, & Baker, 2007).…”

Section: Discussionsupporting

confidence: 56%

Carers' experiences of accessing and navigating mental health care for older people in a rural area in Australia

Dawson

Gerace

Muir‐Cochrane

et al. 2015

Aging & Mental Health

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(250) ObjectivesMental health care for older people is primarily delivered in the community and is largely dependent on informal carers. Mental health policy encourages partnerships between carers and service providers to facilitate service access, coordination and positive experience of care. However, carers often lack information and support from services, with the potential for carer burden, and negative impacts on their own health and capacity to fulfil caring tasks. This paper explores rural carers' experiences of accessing care from a range of services for older people with mental health problems. MethodsThe Pathways Interview Schedule was used to facilitate nine in-depth care journey interviews with eleven carers of older people with a mental health problem. Interviews explored their journeys to and through mental health, aged care, primary care and social care services.Framework analysis was used to explore carers' experiences and perceptions of care with a focus on access enablers and barriers. ResultsCarers had a significant role in navigating services and operationalising care for their relative.Enablers to accessing care included carer knowledge and workers actively involving carers in planning. Barriers included carer mental health literacy, consumer and carer readiness for services, and worker misinterpretation of confidentiality and privacy laws. ConclusionCarers should be considered key partners in mental health care planning that crosses service sectors. For this to occur changes are required at the worker level, including increased communication between mental health workers and carers, and the service level, involving training for staff in interpreting confidentiality and privacy policy.

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Section: Discussionsupporting

confidence: 56%

Carers' experiences of accessing and navigating mental health care for older people in a rural area in Australia

Dawson

Gerace

Muir‐Cochrane

et al. 2015

Aging & Mental Health

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“…12,15 Our results corroborate findings from a recent systematic review indicating a trend toward greater patient preferences for active participation in health care decision-making, 28 and qualitative studies reporting substantial diversity in older adults' decisionmaking preferences. 15,29,30 This study provides new insight regarding the context in which many older adults manage their health, engage in health care decision-making, and experience health care demands. Emerging evidence that patients commonly elect to involve family or close friends in routine or difficult treatment decisions 20,[31][32][33] has prompted elaborations of shared decision-making models that explicitly include family.…”

Section: Discussionmentioning

confidence: 98%

A Look at Person-Centered and Family-Centered Care Among Older Adults: Results from a National Survey

Wolff

Boyd

2015

J GEN INTERN MED

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BACKGROUND:Person-centered and family-centered care represents the pinnacle of health care quality, but delivering it is challenging, as is assessing whether it has occurred. Prior studies portray older adults as passive in health decisions and burdened by care-but emphasize age-based differences or focus on vulnerable subgroups. OBJECTIVES: We aimed to examine domains of person-centered and family-centered care among older adults and whether the social context in which older adults manage their health relates to preferences for participating in health decisions and experiences with care. DESIGN AND PARTICIPANTS: This was an observational study of a nationally representative survey of adults aged 65+ years, conducted in concert with the 2012 National Health and Aging Trends Study (n=2040). MAIN MEASURES: Approach to managing health (selfmanage, co-manage, delegate); preferences for making health care decisions with: (1) doctors, (2) family/close friends; and experiences with care pertaining to treatment burden were measured. KEY RESULTS: Approximately two-thirds of older adults self-manage (69.4 %) and one-third comanage (19.6 %) or delegate (11.0 %) health care activities. The majority prefer an independent or shared role when making health decisions with doctors (84.7 %) and family/close friends (95.9 %). Nearly four in ten older adults (37.9 %) experience treatment burden-that managing health care activities are sometimes or often hard for either them or their family/close friends, that health care activities get delayed or don't get done, or that they are cumulatively too much to do. Relative to older adults who self-manage, those who delegate health care activities are more likely to prefer to share or leave health decisions to doctors (aOR=1.79 (95 % CI, 1.37-2.33) and family/close friends (aOR=3.12 (95 % CI, 2.23-4.36), and are more likely to experience treatment burden (aOR= 2.37 (95 % CI, 1.61-3.47). CONCLUSIONS: Attaining person-centered and familycentered care will require strategies that respect diverse decision-making preferences, minimize treatment burden, and support the broader social context in which older adults manage their health.

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“…Brody (1980) argued that whenever people are ill, less self-reliant, and need to depend on the doctor's decisions, this may undermine their sense of control and self-esteem, as well as their sense of dignity, which shows the importance of patient involvement in the care process. Indeed, some level of involvement was found to be important to many patients, based on data resulting from patient interviews or questionnaires (Bastiaens, Van Royen, Pavlic, Raposo, & Baker, 2007;Frosch & Kaplan, 1999). At the same time, however, there appears to be much variance between and within (older) patients concerning their wish to participate in medical decision-making: not all patients are equally willing to do so (Bastiaens et al, 2007;Brody, 1980;Frosch & Kaplan, 1999;Roberts, 1999).…”

Section: Literature Overviewmentioning

confidence: 99%

“…Indeed, some level of involvement was found to be important to many patients, based on data resulting from patient interviews or questionnaires (Bastiaens, Van Royen, Pavlic, Raposo, & Baker, 2007;Frosch & Kaplan, 1999). At the same time, however, there appears to be much variance between and within (older) patients concerning their wish to participate in medical decision-making: not all patients are equally willing to do so (Bastiaens et al, 2007;Brody, 1980;Frosch & Kaplan, 1999;Roberts, 1999). Generally, it was seen that if patients were more involved in their own care, they showed better health behaviours (Hochhalter, Song, Rush, Sklar, & Stevens, 2010) and improvement in control of chronic diseases (Rohrer et al, 2008).…”

Section: Literature Overviewmentioning

confidence: 99%

“…Most of the studies that did, focused on isolated types of care such as: older people's views on patient involvement or participation, either in primary care (Bastiaens et al, 2007), in care during hospitalisation (Ekdahl, Andersson, & Friedrichsen, 2010), or when being assessed for receiving public home help (Janlöv, Hallberg, & Petersson, 2006). Among the factors that contributed to involvement or participation, according to older adults, were doctor-patient interaction, including communication/information (Bastiaens et al, 2007;Ekdahl et al, 2010); the caregiver's attitude towards the client (Janlöv et al, 2006) or willingness towards patient involvement (Bastiaens et al, 2007); personal characteristics of patients, such as physical or cognitive abilities; or contextual factors such as the availability and accessibility of the health professional, available time, and help of a third person (Bastiaens et al, 2007). Another study (Hibbard, Stockard, Mahoney, & Tusler, 2004) explored what care consumers needed in order to become effective and informed managers of their health and care.…”

Section: Literature Overviewmentioning

confidence: 99%

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Perceived control in health care: A conceptual model based on experiences of frail older adults

Claassens

Widdershoven

Rhijn

et al. 2014

Journal of Aging Studies

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Frail older adults are increasingly encouraged to be in control of their health care, in Western societies. However, little is known about how they themselves perceive control in health care. Therefore, this study aims to investigate the concept of health care-related perceived control from the viewpoint of frail older adults. A qualitative interview study was conducted following a Grounded Theory approach. Thirty-two Dutch frail older adults, aged 65 and over, participated in 20 in-depth interviews (n = 20) and three focus group discussions (n = 12). Data were analysed according to techniques of coding and constant comparison. From this analysis constituting factors of perceived control emerged, providing elements of a conceptual model. Perceived control reflects the feeling or belief that health care is under control, which is constituted by five, either internal or external, factors: (I) self-confidence in organising professional and/or informal care, (II) self-confidence in health management in the home setting, (III) perceived support from people in the social network, (IV) perceived support from health care professionals and organisations, and (V) perceived support from (health care) infrastructure and services. Therefore, the concept does not only consist of people's own perceived efforts, but also includes the influence of external sources. Our conceptual model points out what external factors should be taken into consideration by health care professionals and policy makers when enhancing older people's perceived control. Moreover, it can serve as the basis for the development of a measurement instrument, to enable future quantitative research on health care-related perceived control among older adults.

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Older people's preferences for involvement in their own care: A qualitative study in primary health care in 11 European countries

Cited by 237 publications

References 31 publications

Carers' experiences of accessing and navigating mental health care for older people in a rural area in Australia

Carers' experiences of accessing and navigating mental health care for older people in a rural area in Australia

A Look at Person-Centered and Family-Centered Care Among Older Adults: Results from a National Survey

Perceived control in health care: A conceptual model based on experiences of frail older adults

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