Experience-based design: from redesigning the system around the patient to co-designing services with the patient

Bate, Paul; Robert, Glenn

doi:10.1136/qshc.2005.016527

Cited by 797 publications

(860 citation statements)

References 5 publications

Supporting

Mentioning

842

Contrasting

Unclassified

Order By: Relevance

“…One relevant future research question is; how can expertise, ideas and insights from patients, family and staff be used in participatory processes to achieve more supportive environments in acute care? One of the ways these data have already proven relevant for clinical practice is through their use as discussion triggers in a process inspired by Experience-Based Co-Design (Bate & Robert, 2006) to achieve change in an EoL care setting, based on experiences, expertise and joint goals of patients, family members and staff. We combined data from all three perspectives to develop short films, and have found that the visual data complemented with interview text, has been a particularly powerful means for generating reflections and discussions.…”

Section: Discussionmentioning

confidence: 99%

Family members´ experiences of the end-of-life care environments in acute care settings – a photo-elicitation study

Hajradinovic

Tishelman

Lindqvist

et al. 2018

International Journal of Qualitative Studies on Health and Well

View full text Add to dashboard Cite

Purpose: This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person. Method: We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings. Results: The interpretive description analysis process resulted in three constructed themes—Aesthetic and un-aesthetic impressions, Space for privacy and social relationships, and Need for guidance in crucial times. Aspects of importance in the physical setting related to aesthetics, particularly in regard to sensory experience, and to a need for enough privacy to facilitate the maintenance of social relationships. Interactions between the world of family members and that of professionals were described as intrinsically related to guidance about both the material and immaterial environment at crucial times. Conclusion: The care environment, already recognized to have an impact in relation to patients, is concluded to also affect the participating family members in this study in a variety of ways.

show abstract

Section: Discussionmentioning

confidence: 99%

Family members´ experiences of the end-of-life care environments in acute care settings – a photo-elicitation study

Hajradinovic

Tishelman

Lindqvist

et al. 2018

International Journal of Qualitative Studies on Health and Well

View full text Add to dashboard Cite

show abstract

“…(Bate & Robert, 2006) In our current patient-centered care environment, engaging patients early in any practice change is critically important to avoid changes that are unacceptable to patients and families.…”

Section: Dyadic Intervention Outcomesmentioning

confidence: 99%

A systematic review of heart failure dyadic self-care interventions focusing on intervention components, contexts, and outcomes

Buck

Strömberg

Chung

et al. 2018

International Journal of Nursing Studies

100

View full text Add to dashboard Cite

A B S T R A C T Background:Having support from an informal carer is important for heart failure patients. Carers have the potential to improve patient self-care. At the same time, it should be acknowledged that caregiving could affect the carer negatively and cause emotional reactions of burden and stress. Dyadic (patient and informal carer) heart failure self-care interventions seek to improve patient self-care such as adherence to medical treatment, exercise training, symptom monitoring and symptom management when needed. Currently, no systematic assessment of dyadic interventions has been conducted with a focus on describing components, examining physical and delivery contexts, or determining the effect on patient and/or carer outcomes.Objective: To examine the components, context, and outcomes of dyadic self-care interventions.Design: A systematic review registered in PROSPERO, following PRISMA guidelines with a narrative analysis and realist synthesis. Data Sources: PubMed, EMBASE, Web of Science, PsycINFO, and Cochrane Central Register of Controlled Trials were searched using MeSH, EMTREE terms, keywords, and keyword phrases for the following concepts: dyadic, carers, heart failure and intervention. Eligible studies were original research, written in English, on dyadic self-care interventions in adult samples. Review methods:We used a two-tiered analytic approach including both completed studies with power to determine outcomes and ongoing studies including abstracts, small pilot studies and protocols to forecast future directions.Results: Eighteen papers -12 unique, completed intervention studies (two quasi-and ten experimental trials) from 2000 to 2016 were reviewed.Intervention components fell into three groups -education, support, and guidance. Interventions were implemented in 5 countries, across multiple settings of care, and involved 3 delivery modes -face to face, telephone or technology based. Dyadic intervention effects on cognitive, behavioral, affective and health services utilization outcomes were found within studies. However, findings across studies were inconclusive as some studies reported positive and some non-sustaining outcomes on the same variables. All the included papers had methodological limitations including insufficient sample size, mixed intervention effects and counter-intuitive outcomes. Conclusions:We found that the evidence from dyadic interventions to promote heart failure selfcare, while growing, is still very limited. Future research needs to involve advanced sample size justification, innovative solutions to increase and sustain behavior change, and use of mixed methods for capturing a more holistic picture of effects in clinical practice. Contribution of the paper:What is already known about the topic?• Having support from an informal carer is important for heart failure (HF) patients • Dyadic (patient and informal carer) HF self-care interventions seek to improve patient self-care such as adherence to medical treatment, exercise training, symptom monitoring and symptom...

show abstract

“…social marketing, social movement theory, Planning Alternative Tomorrows with Hope exercise, The Esther Project) 210 and draws on the principles and practice of Experience Based Co-Design. [211][212][213] ELC brings Experience Based Co-Design principles and other person-centred approaches into commissioning and combines them with the use of the highest level of user qualitative evidence. In order to develop an ELC strategy, the relevant qualitative data are combined with local views and 'traditional' commissioning data sets (e.g.…”

Section: Quantifying the Long-term Impacts Of Peripartum Hysterectomymentioning

confidence: 99%

Beyond maternal death: improving the quality of maternal care through national studies of ‘near-miss’ maternal morbidity

Knight

Acosta

Brocklehurst

et al. 2016

Programme Grants Appl Res

101

View full text Add to dashboard Cite

BackgroundStudies of maternal mortality have been shown to result in important improvements to women’s health. It is now recognised that in countries such as the UK, where maternal deaths are rare, the study of near-miss severe maternal morbidity provides additional information to aid disease prevention, treatment and service provision.ObjectivesTo (1) estimate the incidence of specific near-miss morbidities; (2) assess the contribution of existing risk factors to incidence; (3) describe different interventions and their impact on outcomes and costs; (4) identify any groups in which outcomes differ; (5) investigate factors associated with maternal death; (6) compare an external confidential enquiry or a local review approach for investigating quality of care for affected women; and (7) assess the longer-term impacts.MethodsMixed quantitative and qualitative methods including primary national observational studies, database analyses, surveys and case studies overseen by a user advisory group.SettingMaternity units in all four countries of the UK.ParticipantsWomen with near-miss maternal morbidities, their partners and comparison women without severe morbidity.Main outcome measuresThe incidence, risk factors, management and outcomes of uterine rupture, placenta accreta, haemolysis, elevated liver enzymes and low platelets (HELLP) syndrome, severe sepsis, amniotic fluid embolism and pregnancy at advanced maternal age (≥ 48 years at completion of pregnancy); factors associated with progression from severe morbidity to death; associations between severe maternal morbidity and ethnicity and socioeconomic status; lessons for care identified by local and external review; economic evaluation of interventions for management of postpartum haemorrhage (PPH); women’s experiences of near-miss maternal morbidity; long-term outcomes; and models of maternity care commissioned through experience-led and standard approaches.ResultsWomen and their partners reported long-term impacts of near-miss maternal morbidities on their physical and mental health. Older maternal age and caesarean delivery are associated with severe maternal morbidity in both current and future pregnancies. Antibiotic prescription for pregnant or postpartum women with suspected infection does not necessarily prevent progression to severe sepsis, which may be rapidly progressive. Delay in delivery, of up to 48 hours, may be safely undertaken in women with HELLP syndrome in whom there is no fetal compromise. Uterine compression sutures are a cost-effective second-line therapy for PPH. Medical comorbidities are associated with a fivefold increase in the odds of maternal death from direct pregnancy complications. External reviews identified more specific clinical messages for care than local reviews. Experience-led commissioning may be used as a way to commission maternity services.LimitationsThis programme used observational studies, some with limited sample size, and the possibility of uncontrolled confounding cannot be excluded.ConclusionsImplementation of the findings of this research could prevent both future severe pregnancy complications as well as improving the outcome of pregnancy for women. One of the clearest findings relates to the population of women with other medical and mental health problems in pregnancy and their risk of severe morbidity. Further research into models of pre-pregnancy, pregnancy and postnatal care is clearly needed.FundingThe National Institute for Health Research Programme Grants for Applied Research programme.

show abstract

Experience-based design: from redesigning the system around the patient to co-designing services with the patient

Cited by 797 publications

References 5 publications

Family members´ experiences of the end-of-life care environments in acute care settings – a photo-elicitation study

Family members´ experiences of the end-of-life care environments in acute care settings – a photo-elicitation study

A systematic review of heart failure dyadic self-care interventions focusing on intervention components, contexts, and outcomes

Beyond maternal death: improving the quality of maternal care through national studies of ‘near-miss’ maternal morbidity

Contact Info

Product

Resources

About