Changing conversations in primary care for patients living with chronic conditions: pilot and feasibility study of the ICAN Discussion Aid

Boehmer, Kasey R.; Dobler, Claudia C.; Thota, Anjali; Branda, Megan E.; Giblon, Rachel; Behnken, Emma; Organick, Paige; Allen, Summer V.; Shaw, Kevin; Montori, Víctor M.

doi:10.1136/bmjopen-2019-029105

Cited by 20 publications

(24 citation statements)

References 28 publications

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“…All HCPs felt that their efforts to assist with burden and capacity were limited by contextual factors over which they had little power. Consistent with other literature [ 41 , 42 ], some experienced their own personal ‘treatment burden’ in trying to fill the gaps of poor service provision, and others stepped outside of their role to provide additional support or co-ordination if it was unavailable in their healthcare setting. They felt that many barriers could only be dealt with by the injection of more money and practical approaches including better technology, administrative support, stronger linkages between health and social services and time allocated for HCPs to communicate directly to each other.…”

Section: Discussionsupporting

confidence: 64%

Healthcare professionals’ perspective on treatment burden and patient capacity in low-income rural populations: challenges and opportunities

2021

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Background The challenges of chronic disease self-management in multimorbidity are well-known. Shippee’s Cumulative Complexity Model provides useful insights on burden and capacity factors affecting healthcare engagement and outcomes. This model reflects patient experience, but healthcare providers are reported to have a limited understanding of these concepts. Understanding burden and capacity is important for clinicians, since they can influence these factors both positively and negatively. This study aimed to explore the perspectives of healthcare providers using burden and capacity frameworks previously used only in patient studies. Methods Participants were twelve nursing and allied health providers providing chronic disease self-management support in low-income primary care settings. We used written vignettes, constructed from interviews with multimorbid patients at the same health centres, to explore how clinicians understood burden and capacity. Interviews were recorded and transcribed verbatim. Analysis was by the framework method, using Normalisation Process Theory to explore burden and the Theory of Patient Capacity to explore capacity. Results The framework analysis categories fitted the data well. All participants clearly understood capacity and were highly conscious of social (e.g. income, family demands), and psychological (e.g. cognitive, mental health) factors, in influencing engagement with healthcare. Not all clinicians recognised the term ‘treatment burden’, but the concept that it represented was familiar, with participants relating it both to specific treatment demands and to healthcare system deficiencies. Financial resources, health literacy and mental health were considered to have the biggest impact on capacity. Interaction between these factors and health system barriers (leading to increased burden) was a common and challenging occurrence that clinicians struggled to deal with. Conclusions The ability of health professionals to recognise burden and capacity has been questioned, but participants in this study displayed a level of understanding comparable to the patient literature. Many of the challenges identified were related to health system issues, which participants felt powerless to address. Despite their awareness of burden and capacity, health providers continued to operate within a single-disease model, likely to increase burden. These findings have implications for health system organisation, particularly the need for alternative models of care in multimorbidity.

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Section: Discussionsupporting

confidence: 64%

Healthcare professionals’ perspective on treatment burden and patient capacity in low-income rural populations: challenges and opportunities

2021

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“…There are interventions we have not included in Table 3 , but which have beneficial potential and are worthwhile areas for future research. First, in relation to the previously discussed high treatment burden upon many people with DCC, research has recently developed conversation aid tools to help clinicians assess and discuss treatment burden, and thus take actions to improve illness workloads for highly burdened patients [ 22 ]. Evidence for these tools is still in progress, but they may assist oncology staff in understanding an individual’s holistic ‘medical and social landscape’ and thus providing the individualised care needed by people with DCC.…”

Section: Discussionmentioning

confidence: 99%

Understanding and identifying ways to improve hospital-based cancer care and treatment for people with dementia: an ethnographic study

et al. 2020

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Background Providing cancer care and treatment for ageing populations with complicating comorbidities like dementia is a growing global challenge. This study aimed to examine the hospital-based cancer care and treatment challenges and support needs of people with dementia, and identify potential ways to address these. Methods A two-site ethnographic study in England involving semi-structured interviews, observations and accompanying conversations, and medical record review. Participants (N = 58) were people with dementia and comorbid cancer (n = 17), informal caregivers (n = 22) and hospital staff (n = 19). Ethnographically informed thematic analysis was conducted. Results There was an accumulated complexity of living with both illnesses simultaneously. People with dementia and families could feel confused and uninformed due to difficulties understanding, retaining and using cancer information, which impacted their informed treatment decision-making. Dementia increased the complexity and burden of travelling to and navigating unfamiliar hospital environments, frequent lengthy periods of waiting in hospital, and self-managing symptoms and side-effects at home. Oncology staff were often working without the full picture, due to variable documenting of dementia in medical records, dementia training was limited, and time and resource pressures impeded the highly individualised, flexible cancer care required by people with dementia. Supportive family carers were crucial in enabling people with dementia to access, navigate and undergo cancer treatment and care. Conclusions Dementia complicates cancer care in a range of ways accumulating across the cancer pathway. Our findings suggest there are several strategies and interventions, which we list here, with potential to improve cancer care and treatment for people with dementia and their families.

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“…Observations during clinical encounters and nurse home visits were followed by the development and testing prototypes, resulting in the final ICAN Discussion Aid (see Additional file 6 ). The ICAN was found feasible to use during clinical encounters [ 46 ]. Using videographic coding scheme, results also showed that issues discussed with the ICAN were seldom discussed during control clinical encounters [ 46 ].…”

Section: Methodsmentioning

confidence: 99%

“…The ICAN was found feasible to use during clinical encounters [ 46 ]. Using videographic coding scheme, results also showed that issues discussed with the ICAN were seldom discussed during control clinical encounters [ 46 ]. A randomized controlled trial is ongoing to test the impact on patient and healthcare teams’ care experience and communication, while reducing patient treatment burden (NCT03017196).…”

Section: Methodsmentioning

confidence: 99%

Implementation and preliminary testing of a theory-guided nursing discharge teaching intervention for adult inpatients aged 50 and over with multimorbidity: a pragmatic feasibility study protocol

Pellet

Weiss

Zúñiga

et al. 2021

Pilot Feasibility Stud

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Background Discharge teaching by nurses during hospitalization is essential to provide multimorbid inpatients with the knowledge and skills to self-manage their health conditions. However, available disease-specific teaching guidelines do not address the cumulative complexity of multiple chronic diseases that occur with greater frequency in older adults. Therefore, there is a need for a discharge teaching intervention which uses concepts that specifically address the needs of these patients, such as considering their level of activation (i.e. knowledge, skills and confidence to self-manage their health) and the burden of multimorbid disease. The objectives of this pragmatic study will be to (1) test the feasibility of implementing a nursing discharge teaching intervention and (2) conduct a preliminary test of this novel discharge teaching intervention with adult inpatients age 50 or greater who have multiple comorbid conditions. Methods This study uses a two-group pre-posttest design. Participants are drawn from medical units in three hospitals in the French-speaking part of Switzerland. The implementation of the intervention will be facilitated by implementation strategies from the Theoretical Domains Framework and the Behavior Change Wheel and will target change in nurses’ teaching behaviours. Implementation outcomes will include measures of feasibility of the implementation strategies and the intervention process. Participants in the intervention group will receive tailored discharge teaching by trained teaching nurses. Patient outcomes will inform the preliminary testing of the intervention and will be measured with validated questionnaires assessing patients’ activation level, health confidence, perceived readiness for discharge, experience with the discharge process and rate of and time to readmission. Discussion The study takes a pragmatic approach to examining the feasibility of implementing the discharge teaching intervention to contribute to the knowledge development within the context of the real-world practice setting. Results will provide the foundation for clinical trials to build evidence for widespread adoption of this intervention. Trial registration The trial is registered at ClinicalTrials.gov (ID: NCT04253665) on the 30 of January 2020 and has been approved by the Cantonal Ethics Committee Vaud in Switzerland (2020-00141).

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Changing conversations in primary care for patients living with chronic conditions: pilot and feasibility study of the ICAN Discussion Aid

Cited by 20 publications

References 28 publications

Healthcare professionals’ perspective on treatment burden and patient capacity in low-income rural populations: challenges and opportunities

Healthcare professionals’ perspective on treatment burden and patient capacity in low-income rural populations: challenges and opportunities

Understanding and identifying ways to improve hospital-based cancer care and treatment for people with dementia: an ethnographic study

Implementation and preliminary testing of a theory-guided nursing discharge teaching intervention for adult inpatients aged 50 and over with multimorbidity: a pragmatic feasibility study protocol

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