How empowering is hospital care for older people with advanced disease? Barriers and facilitators from a cross-national ethnography in England, Ireland and the USA

Selman, Lucy E; Daveson, Barbara A; Smith, M. J. H.; Johnston, Bridget; Ryan, Karen; Pannell, Caty; McQuillan, Regina; Wolf-Linder, Susanne de; Pantilat, Steven Z.; Klass, Lara; Meier, Diane E.; Normand, Charles; Higginson, Irene J

doi:10.1093/ageing/afw193

Cited by 11 publications

(31 citation statements)

References 25 publications

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“…Countries represented across the 13 papers were the United Kingdom (n = 5), [25][26][27][28][29] the United States (n = 3), 27,30,31 Australia (n = 3), [31][32][33] Ireland (n = 2), 27,34 the Netherlands (n = 1) 35 and Norway (n = 1). 36 There were seven qualitative studies and six mixed method studies, the characteristics of which are summarised in Tables 1 and 2, respectively. Data were of three types: patient quotes, [27][28][29] the author's words when discussing the study results 25,26,[29][30][31][32][33][35][36][37] and the reported outcome/s of interventions. Of the 13 studies, 7 included participants with cancer diagnoses, while the remaining 6 included a mix of cancer and non-cancer patient groups.…”

Section: Resultsmentioning

confidence: 99%

“…33 However, the ability for patients to control or partake in daily basic care activities was challenged by the timetabling of care and imposition of non-negotiable health and social care both in community and hospital settings. 27,33 This blanket caregiving created a 'defy or comply' response from patients, depending on their strength and/or confidence to challenge professionals. 33 Receiving the respect of others, reflected in being acknowledged, and being afforded privacy and inclusion despite disability were key features of empowerment.…”

Section: Self-identitymentioning

confidence: 99%

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Patient empowerment, what does it mean for adults in the advanced stages of a life-limiting illness: A systematic review using critical interpretive synthesis

et al. 2018

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Background:Patient empowerment, defined as ‘a process through which people gain greater control over decisions and actions affecting their health’ (World Health Organization) is a key theme within global health and social care strategies. The benefits of incorporating empowerment strategies in care are well documented, but little is known about their application or impact for patients with advanced, life-limiting illness(s).Aim:To identify and synthesise the international evidence on patient empowerment for adults with advanced, life-limiting illness(s).Design:Systematic review (PROSPERO no. 46113) with critical interpretive synthesis methodology.Data sources:Five databases (MEDLINE, Embase, CINHAL, PsycINFO and Cochrane) were searched from inception to March 2018. Grey literature and reference list/citation searches of included papers were undertaken. Inclusion criteria: empirical research involving patients with advanced life-limiting illness including descriptions of, or references to, patient empowerment within the study results.Results:In all, 13 papers met inclusion criteria. Two qualitative studies explored patient empowerment as a study objective. Six papers evaluated interventions, referencing patient empowerment as an incidental outcome. The following themes were identified from the interpretive synthesis: self-identity, personalised knowledge in theory and practice, negotiating personal and healthcare relationships, acknowledgement of terminal illness, and navigating continued losses.Conclusion:There are features of empowerment, for patients with advanced life-limiting illness distinct to those of other patient groups. Greater efforts should be made to progress the empowerment of patients nearing the end of their lives. We propose that the identified themes may provide a useful starting point to guide the assessment of existing or planned services and inform future research.

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Section: Resultsmentioning

confidence: 99%

Section: Self-identitymentioning

confidence: 99%

Patient empowerment, what does it mean for adults in the advanced stages of a life-limiting illness: A systematic review using critical interpretive synthesis

et al. 2018

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“…According to Ellen Selman (2017), empowering patients in one setting needs changes throughout the health system. Social participation, good staff-patient communication, increasing the knowledge level of the family, patient-centred care, an organizational focus on patient experience rather than throughput, and appropriate access to palliative care are the most influential factors on empowerment of patients [ 23 , 24 ]. Our results also showed that younger patients are more impressed by subjective norms, and we can conclude that having communication with other patients would be helpful for younger patients (since we measured subjective norms as “what other patients do in this case”).…”

Section: Discussionmentioning

confidence: 99%

An application of the theory of planned behavior to self-care in patients with hypertension

et al. 2020

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Background: Self-care behaviors and positive changes in lifestyle are essential for successful hypertension control. We used a behavioral model based on the theory of planned behavior to assess which factors influence self-care behaviors for controlling hypertension. Methods: In this cross-sectional study, five hundred patients with at leastaone-year history of diagnosed hypertension participated in this study. The data collection tool was designed based on the theory of planned behavior. Structural equation modeling was used to estimate the main parameters. Results: For self-care behaviors, ninety-six (19.2%) and forty-five (9.1%) participants had good knowledge and acceptable behavior(≥8 out of 10 points). Having perceived behavioral control regarding quitting smoking and alcohol intake was associated with the patient's intention and behavior [b:1.283 ± .095 and b:1.59 ± .014 (p < .001)]. Having perceived behavioral control over the other self-care behaviors had a positive effect on the intention in female patients [b: .885 ± .442 (p = .045)]. Subjective norms had a positive effect on behavioral intention in younger patients [b:4.52 ± 2.24 (P = .04)]. Conclusions: Group-specific behavioral barriers are important when improving self-care behaviors in patients with hypertension. Perceived control over self-care behaviors is more important in vulnerable patients, such as the elderly and women.

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“…Other research studies have captured older adults’ perceptions of dignity in acute care settings (Tadd et al., ) and highlighted the importance of listening to the older person and learning from their feedback (Dickson, Riddell, Gilmour, & McCormack, ). Poor communication and information provision, along with institutionalised nursing care routines, also emerged as major contributors to the disempowerment of the older person from participating in their care (Selman et al., ).…”

Section: Introductionmentioning

confidence: 99%

“…Poor communication and information provision, along with institutionalised nursing care routines, also emerged as major contributors to the disempowerment of the older person from participating in their care (Selman et al, 2017).…”

Section: Introductionmentioning

confidence: 99%

Experiences of the older hospitalised person on nursing pain care: An ethnographic insight

Harmon

Summons

Higgins

2019

Journal of Clinical Nursing

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Aims and objectives To present an ethnographic insight into the older hospitalised person (those aged over 65 years) perceptions and experiences of pain care provision by nurses in acute care. Background Pain care provision by nurses remains less than optimal for the older hospitalised person despite numerous evidence‐based guidelines. There is a paucity of research providing input from the experiences of the older hospitalised person in relation to their perspectives of pain care provision by nurses in acute care. Pain care research needs more involvement from those older persons with documented diagnoses of dementia, delirium or cognitive impairment, and intellectual disabilities and those in their end stage of palliation. Design A focused ethnographic study. The consolidated criteria for reporting qualitative research (COREQ) were used to report the findings of this study. Methods A focused ethnographic study was conducted in 8 acute care units within 2 large tertiary referral hospitals on the east coast of Australia. Consisting of semi‐structured interviews (n = 12) of cognitively intact older persons (11 hr). Twenty‐three (23) semi‐structured interviews with nine (9) RN participants (12 hr and 38 min). Participant observation period totalled 1,041 hr. Results The older persons’ experiences of receiving pain care were based on a formulaic assessment process focusing on intensity of pain and pain management options provided often lacked their input. The older persons often did not perceive their pain care provision as being of benefit to themselves. The nurses lacked insight and understanding on the nature of pain for the older person. Conclusion Understanding was gained into how the older persons’ pain care was hampered due to the lack of appropriate, and meaningful pain care provision and provides insight into why the older hospitalised person continues to experience a less than optimal experience. Relevance to clinical practice Older hospitalised persons can gain continuity of pain care when nurses negotiate with them to repattern or restructure their nursing routines for pain care provision. Older people need inclusion into pain care decisions. All vulnerable older persons require nurses to use an evidence‐based pain assessment tool.

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How empowering is hospital care for older people with advanced disease? Barriers and facilitators from a cross-national ethnography in England, Ireland and the USA

Cited by 11 publications

References 25 publications

Patient empowerment, what does it mean for adults in the advanced stages of a life-limiting illness: A systematic review using critical interpretive synthesis

Patient empowerment, what does it mean for adults in the advanced stages of a life-limiting illness: A systematic review using critical interpretive synthesis

An application of the theory of planned behavior to self-care in patients with hypertension

Experiences of the older hospitalised person on nursing pain care: An ethnographic insight

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