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Finding a 'new normal' following acute illness: A qualitative study of influences on frail older people's care preferences.

ABSTRACT: BACKGROUND::The frail older population is growing, and many frail older people have episodes of acute illness. Patient preferences are increasingly considered important in the delivery of person-centred care and may change following acute illness. AIM::To explore influences on the care preferences of frail older people with recent acute illness. DESIGN::Qualitative in-depth individual interviews, with thematic analysis. SETTING/PARTICIPANTS::Maximum variation sample of 18 patients and 7 nominated family carers from a prospective cohort study of people aged over 65, scoring ⩾5 on the Clinical Frailty Scale, and with recent acute illness, who were not receiving specialist palliative care. Median patient age was 84 (inter-quartile range 81-87), 53% female. Median frailty score 6 (inter-quartile range 5-7). RESULTS::Key influences on preferences were illness and care context, particularly hospital care; adaptation to changing health; achieving normality and social context. Participants focused on the outcomes of their care; hence, whether care was likely to help them 'get back to normal', or alternatively 'find a new normal' influenced preferences. For some, acute illness inhibited preference formation. Participants' social context and the people available to provide support influenced place of care preferences. We combined these findings to model influences on preferences. CONCLUSION::'Getting back to normal' or 'finding a new normal' are key focuses for frail older people when considering their preferences. Following acute illness, clinicians should discuss preferences and care planning in terms of an achievable normal, and carefully consider the social context. Longitudinal research is needed to explore the influences on preferences over time.

SUBMITTER: Etkind SN

PROVIDER: S-EPMC6376597 | biostudies-other | 2019 Mar

REPOSITORIES: biostudies-other

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Finding a 'new normal' following acute illness: A qualitative study of influences on frail older people's care preferences.

Etkind Simon Noah SN Lovell Natasha N Nicholson Caroline Jane CJ Higginson Irene J IJ Murtagh Fliss Em FE

Palliative medicine 20181207 3

PMID: 30526371

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Project description:Background Patient preferences are integral to person-centred care, but preference stability is poorly understood in older people, who may experience fluctuant illness trajectories with episodes of acute illness. We aimed to describe, and explore influences on the stability of care preferences in frail older people following recent acute illness. Methods Mixed-methods prospective cohort study with dominant qualitative component, parallel data collection and six-month follow up. Study population: age???65, Rockwood Clinical Frailty score???5, recent acute illness requiring acute assessment/hospitalisation. Participants rated the importance of six preferences (to extend life, improve quality of life, remain independent, be comfortable, support ‘those close to me’, and stay out of hospital) at baseline, 12 and 24?weeks using a 0–4 scale, and ranked the most important. A maximum-variation sub-sample additionally contributed serial in-depth qualitative interviews. We described preference stability using frequencies and proportions, and undertook thematic analysis to explore influences on preference stability. Results 90/192 (45%) of potential participants consented. 82/90 (91%) answered the baseline questionnaire; median age 84, 63% female. Seventeen undertook qualitative interviews. Most participants consistently rated five of the six preferences as important (range 68–89%). ‘Extend life’ was rated important by fewer participants (32–43%). Importance ratings were stable in 61–86% of cases. The preference ranked most important was unstable in 82% of participants. Preference stability was supported by five influences: the presence of family support; both positive or negative care experiences; preferences being concordant with underlying values; where there was slowness of recovery from illness; and when preferences linked to long term goals. Preference change was related to changes in health awareness, or life events; if preferences were specific to a particular context, or multiple concurrent preferences existed, these were also more liable to change. Conclusions Preferences were largely stable following acute illness. Stability was reinforced by care experiences and the presence of family support. Where preferences were unstable, this usually related to changing health awareness. Consideration of these influences during preference elicitation or advance care planning will support delivery of responsive care to meet preferences. Obtaining longer-term data across diverse ethnic groups is needed in future research.

Project description:BackgroundSelf-management abilities seem to be important for the cognitive functioning of older people, especially those who are frail. We investigated relationships between broad self-management abilities (initiative taking, investment behavior, resource variety, resource multifunctionality, self-efficacy, and positive frame of mind) and cognitive functioning among frail older people while controlling for background characteristics (sex, age, marital status, and educational level).MethodSurvey data were collected from mid-2014 to mid-2015 from community-dwelling frail older people residing in North Brabant, the Netherlands. We measured cognitive functioning with the 12-item Mini-Mental State Examination (MMSE-12) and self-management abilities with the short version of the Self-Management Ability Scale (SMAS-S).ResultsIn total, 588 of 834 potential participants were willing to participate (70.5% response rate). The mean age was 82.33 ± 5.19 and the majority (68.5%) of respondents were female. About one-third (38.4%) of respondents had low educational levels and 61.7% lived alone. Mean MMSE-12 and SMAS-S scores were 9.68 ± 2.10 and 3.70 ± 0.88, respectively. Bivariate analyses showed that all six self-management abilities were related positively to cognitive functioning. Multivariate analyses with adjustment for background characteristics (sex, age, marital status, and educational level) showed that cognitive functioning was associated positively with initiative taking (β = 0.23, p = 0.030) and investment behavior (β = 0.24, p = 0.030) among community-dwelling frail older people.ConclusionsThis study clearly showed that a repertoire of broad self-management abilities is related to cognitive functioning among community-dwelling frail older people. Initiative taking and investment behavior seem to be especially important. These findings are of interest in a time of populational aging and an increasing number of older people dealing with cognitive problems. Preventive investments in (older) people's self-management abilities are expected to be beneficial for their cognitive functioning in the long term.

Project description:BackgroundHIV self-testing (HIVST) provides young people with a convenient, discreet, and empowering way to know their HIV status. However, there is limited knowledge of young people's preferences for HIVST services and potential factors that may influence the uptake of HIVST among this population. The purpose of this research was to use qualitative methods to examine HIVST preferences among Nigerian youth.MethodsSemi-structured in-depth interviews with a purposive sample of young people 14-24 years old were conducted in Lagos, Nigeria. Data were analyzed thematically to identify themes and domains related to preferences and factors influencing the use of HIV self-testing.ResultsA total of 65 youth with mean age of 21 years, were interviewed, and the majority were females (56%). Four themes emerged as the most important characteristics that may influence young people's preferences for HIV self-testing: 1) Cost (i.e. majority of participants noted that they would pay between NGN500 to NGN1,500 naira (USD1.38-USD4.16) for oral HIV self-testing kits); 2) Testing method (i.e. although blood-based sample kits were more popular than oral-based self-testing kits, most preferred the oral-based option due to its perceived benefits and for some, phobia of needles); 3) Access location (i.e. participants suggested they preferred to obtain the HIVST kits from youth-friendly centers, pharmacies, private health facilities, and online stores); and 4) Continuing care and support (i.e. participants highlighted the importance of linkage to care with trained youth health workers for positive or negative test results or toll-free helpline).ConclusionHIV self-testing preferences among Nigerian youth appear to be influenced by several factors including lower cost, less invasive testing method, location of testing, and linkage to care and support post testing. Findings underscore the need to address young people's HIV self-testing preferences as a foundation for implementing programs and research to increase the uptake of HIVST.

Project description:BackgroundDirect payments (DPs) are cash-payments that eligible individuals can receive to purchase care services by themselves. DPs are central to current social care policy in England, but their advantages remain controversial. This controversy is partly due to their lack of historical visibility: DPs were deployed in stages, bundled with other policy instruments (first individual budgets, then personal budgets), and amidst increasing budgetary constraints. As a result, little unequivocal evidence is available about the effectiveness of DPs as an instrument for older people's care. This study aims to partially fill that gap using data obtained during an early evaluation of DP's that took place between 2005 and 07.MethodsSemi-structured 81 face-to-face interviews with older people (and their proxies) using DPs are analyzed. DPs contribution to outcomes was measured using a standardized utility scale. Data on individual characteristics (dependency, informal support) and received services (types and amount of services) was also gathered. Multiple regression analyses were performed between measured outcome gains and individual and service characteristics. A Poisson log-functional form was selected to account for the low mean and positive skew of outcome gains.ResultsLevels of met need compared very favorably to average social care outcomes in the domains of social participation, control over daily living and safety, and user satisfaction was high. Benefit from DPs was particularly affected by the role and function of unpaid care and availability of recruitment support. The freedom to combine funded care packages with self-funded care enhanced the positive impact of the former. The ability to purchase care that deviated from standardized care inputs improved service benefits. Large discrepancies between total care input and that supported through DPs negatively affected outcomes.ConclusionsThe results offer clarity regarding the benefit derived from receiving DPs. They also clarify contested aspects of the policy such as the influence of unpaid care, types of care received, funding levels and the role of wider support arrangements. Tangible benefits may results from direct payments but those benefits are highly dependent on policy implementation practices. Implementation of DPs should pay special attention to the balance between DP funded care and unpaid care.

Dataset Information

Finding a 'new normal' following acute illness: A qualitative study of influences on frail older people's care preferences.

Publications

Finding a 'new normal' following acute illness: A qualitative study of influences on frail older people's care preferences.

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