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Co-construction of the family-focused support conversation: a participatory learning and action research study to implement support for family members whose relatives are being discharged for end-of-life care at home or in a nursing home.

ABSTRACT: BACKGROUND:Many people move in and out of hospital in the last few weeks of life. These care transitions can be distressing for family members because they signify the deterioration and impending death of their ill relative and forthcoming family bereavement. Whilst there is evidence about psychosocial support for family members providing end-of-life care at home, there is limited evidence about how this can be provided in acute hospitals during care transitions. Consequently, family members report a lack of support from hospital-based healthcare professionals. METHODS:The aim of the study was to implement research evidence for family support at the end-of-life in acute hospital care. Informed by Participatory Learning and Action Research and Normalization Process Theory (NPT) we co-designed a context-specific intervention, the Family-Focused Support Conversation, from a detailed review of research evidence. We undertook a pilot implementation in three acute hospital Trusts in England to assess the potential for the intervention to be used in clinical practice. Pilot implementation was undertaken during a three-month period by seven clinical co-researchers - nurses and occupational therapists in hospital specialist palliative care services. Implementation was evaluated through data comprised of reflective records of intervention delivery (n =?22), in-depth records of telephone implementation support meetings between research team members and co-researchers (n =?3), and in-depth evaluation meetings (n =?2). Data were qualitatively analysed using an NPT framework designed for intervention evaluation. RESULTS:Clinical co-researchers readily incorporated the Family-Focused Support Conversation into their everyday work. The intervention changed family support from being solely patient-focused, providing information about patient needs, to family-focused, identifying family concerns about the significance and implications of discharge and facilitating family-focused care. Co-researchers reported an increase in family members' involvement in discharge decisions and end-of-life care planning. CONCLUSION:The Family-Focused Support Conversation is a novel, evidenced-based and context specific intervention. Pilot implementation demonstrated the potential for the intervention to be used in acute hospitals to support family members during end-of-life care transitions. This subsequently informed a larger scale implementation study. TRIAL REGISTRATION:n/a.

SUBMITTER: Duke S

PROVIDER: S-EPMC7507823 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

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Co-construction of the family-focused support conversation: a participatory learning and action research study to implement support for family members whose relatives are being discharged for end-of-life care at home or in a nursing home.

Duke Sue S Campling Natasha N May Carl R CR Lund Susi S Lunt Neil N Richardson Alison A

BMC palliative care 20200921 1

<h4>Background</h4>Many people move in and out of hospital in the last few weeks of life. These care transitions can be distressing for family members because they signify the deterioration and impending death of their ill relative and forthcoming family bereavement. Whilst there is evidence about psychosocial support for family members providing end-of-life care at home, there is limited evidence about how this can be provided in acute hospitals during care transitions. Consequently, family mem ...[more]

PMID: 32957952

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Project description:BackgroundLittle prior research focused on person-centred care and support (PCCS) for dementia in home, community or outpatient care. We aimed to describe what constitutes PCCS, how to implement it, and considerations for women who comprise the majority of affected persons (with dementia, carers).MethodsWe conducted a scoping review by searching multiple databases from 2000 inclusive to June 7, 2020. We extracted data on study characteristics and PCCS approaches, evaluation, determinants or the impact of strategies to implement PCCS. We used summary statistics to report data and interpreted findings with an existing person-centred care framework.ResultsWe included 22 studies with qualitative (55%) or quantitative/multiple methods design (45%) involving affected persons (50%), or healthcare workers (50%). Studies varied in how PCCS was conceptualized; 59% cited a PCC definition or framework. Affected persons and healthcare workers largely agreed on what constitutes PCCS (e.g. foster partnership, promote autonomy, support carers). In 4 studies that evaluated care, barriers of PCCS were reported at the affected person (e.g. family conflict), healthcare worker (e.g. lack of knowledge) and organizational (e.g. resource constraints) levels. Studies that evaluated strategies to implement PCCS approaches were largely targeted to healthcare workers, and showed that in-person inter-professional educational meetings yielded both perceived (e.g. improved engagement of affected persons) and observed (e.g. use of PCCS approaches) beneficial outcomes. Few studies reported results by gender or other intersectional factors, and none revealed if or how to tailor PCCS for women. This synthesis confirmed and elaborated the PCC framework, resulting in a Framework of PCCS for Dementia.ConclusionDespite the paucity of research on PCCS for dementia, synthesis of knowledge from diverse studies into a Framework provides interim guidance for those planning or evaluating dementia services in outpatient, home or community settings. Further research is needed to elaborate the Framework, evaluate PCCS for dementia, explore determinants, and develop strategies to implement and scale-up PCCS approaches. Such studies should explore how to tailor PCCS needs and preferences based on input from persons with dementia, and by sex/gender and other intersectional factors such as ethnicity or culture.

Project description:ObjectivesTo investigate the association of the utilization of Medicare-certified home health agency (CHHA) services with post-acute skilled nursing facility (SNF) discharge outcomes that included home time, rehospitalization, SNF readmission, and mortality.DesignRetrospective cohort study.SettingNew York State fee-for-service Medicare beneficiaries aged 65 years and older admitted to SNFs for post-acute care and discharged to the community in 2014.ParticipantsA total of 25,357 older adults.MeasurementsThe outcomes included days spent alive in the community ("home time"), rehospitalization, SNF readmission, and mortality within 30- and 90-day post-SNF discharge periods. The primary independent variables were SNF five-star overall quality rating and receipt of CHHA services within 7 days of SNF discharge. Zero-inflated negative binomial regression and logistic regression models characterized the association of CHHA linkage with home time and other outcomes, respectively.ResultsFollowing SNF discharge, 17,657 (69.6%) patients received CHHA services. In analyses that adjusted for patient-, market-, and other SNF-level factors, older adults discharged from higher quality SNFs were more likely to receive CHHA services. In analyses that adjusted for patient- and market-level factors, receipt of post-SNF CHHA services was associated with 2.03 and 4.17 (P < .001) more days in the community over 30- and 90-day periods. Receiving CHHA services was also associated with decreased odds for rehospitalization (odds ratio [OR] = .68; P < .001; OR = .91; P = .008), SNF readmission (OR = .36; P < .001; OR = .62; P < .001), and death (OR = .34; P < .001; OR = .63; P < .001) over 30- and 90-day periods, respectively.ConclusionAmong older adults discharged from a post-acute SNF stay, those who received CHHA services had better discharge outcomes. They were less likely to experience admissions to institutional care settings and had a lower mortality risk. Future efforts that examine how the type and intensity of CHHA services affect outcomes would build on this work. J Am Geriatr Soc 68:1573-1578, 2020.

Project description:BackgroundGuidelines recommend shared decision making (SDM) for determining whether to use statins to prevent cardiovascular events in at-risk patients. We sought to develop a toolkit to facilitate the cross-organizational spread and scale of a SDM intervention called the Statin Choice Conversation Aid (SCCA) by (i) assessing the work stakeholders must do to implement the tool; and (ii) orienting the resulting toolkit's components to communicate and mitigate this work.MethodsWe conducted multi-level and mixed methods (survey, interview, observation, focus group) characterizations of the contexts of 3 health systems (n = 86, 84, and 26 primary care clinicians) as they pertained to the impending implementation of the SCCA. We merged the data within implementation outcome domains of feasibility, appropriateness, and acceptability. Using Normalization Process Theory, we then characterized and categorized the work stakeholders did to implement the tool. We used clinician surveys and IP address-based tracking to calculate SCCA usage over time and judged how stakeholder effort was allocated to influence outcomes at 6 and 18 months. After assessing the types and impact of the work, we developed a multi-component toolkit.ResultsAt baseline, the three contexts differed regarding feasibility, acceptability, and appropriateness of implementation. The work of adopting the tool was allocated across many strategies in complex and interdependent ways to optimize these domains. The two systems that allocated the work strategically had higher uptake (5.2 and 2.9 vs. 1.1 uses per clinician per month at 6 months; 3.8 and 2.1 vs. 0.4 at 18 months, respectively) than the system that did not. The resulting toolkit included context self-assessments intended to guide stakeholders in considering the early work of SCCA implementation; and webinars, EMR integration guides, video demonstrations, and an implementation team manual aimed at supporting this work.ConclusionsWe developed a multi-component toolkit for facilitating the scale-up and spread of a tool to promote SDM across clinical settings. The theory-based approach we employed aimed to distinguish systems primed for adoption and support the work they must do to achieve implementation. Our approach may have value in orienting the development of multi-component toolkits and other strategies aimed at facilitating the efficient scale up of interventions.Trial registrationClinicalTrials.gov NCT02375815 .

Project description:BACKGROUND:People living with chronic illnesses are an increasingly large group. Research indicates that care and self-management should not only focus on the illness and problem-oriented aspects of these individuals' lives but also support them in recognizing and leveraging their personal strengths in daily life. OBJECTIVE:This paper presents the design and developmental process of MyStrengths, a mobile health (mHealth) app designed to help its users (people with chronic conditions) both find and make use of their personal strengths in their daily lives. Through 4 consecutive phases, this paper presents participant- and researcher-driven activities, discussions regarding design, and development of both the MyStrengths app and its content. METHODS:During the 4 phases, we used a range of methods and activities, including (1) an idea-generating workshop aimed at creating ideas for strengths-supporting features with different stakeholders, including patients, caregivers, relatives, and designers (N=35); (2) research seminars with an international group of experts (N=6), in which the concept, theoretical background, and design ideas for the app were discussed; (3) a series of co-design workshops with people in the user group (N=22) aiming to create ideas for how to, in an engaging manner, design the app; and (4) in 4 developmental iterations, the app was evaluated by people in the user group (N=13). Content and strengths exercises were worked on and honed by the research team, the expert groups, and our internal editorial team during the entire developmental process. RESULTS:The first phase found a wide range of stakeholder requirements to, and ideas for, strengths-focused mHealth apps. From reviewing literature during the second phase, we found a dearth of research on personal strengths with respect to people living with chronic illnesses. Activities during the third phase creatively provided numerous ideas and suggestions for engaging and gameful ways to develop and design the MyStrengths app. The final phase saw the output from all the earlier phases come together. Through multiple increasingly complete iterations of user evaluations testing and developing, the final prototype of the MyStrengths app was created. CONCLUSIONS:Although research supports the use of strengths-focused mHealth tools to support people living with chronic illnesses, there is little guidance as to how these tools and their content should be designed. Through all activities, we found great support among participating users for strengths-focused apps, and we can consider such apps to be both appropriate and valuable. This paper illustrates how combining a range of user-, researcher-, literature-, and designer-based methods can contribute to creating mHealth tools to support people with chronic illnesses to find and use more of their own personal strengths.

Dataset Information

Co-construction of the family-focused support conversation: a participatory learning and action research study to implement support for family members whose relatives are being discharged for end-of-life care at home or in a nursing home.

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Co-construction of the family-focused support conversation: a participatory learning and action research study to implement support for family members whose relatives are being discharged for end-of-life care at home or in a nursing home.

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