Understanding Patients’ Experiences of Treatment Burden in Chronic Heart Failure Using Normalization Process Theory
TLDR
The findings suggest that NPT is a theoretical framework that facilitates understanding of experiences of health care work at the individual, as well as the organizational, level and lay the foundation for a new target for treatment and quality improvement efforts toward patient-centered care.Abstract:
PURPOSE Our goal was to assess the burden associated with treatment among patients living with chronic heart failure and to determine whether Normalization Process Theory (NPT) is a useful framework to help describe the components of treatment burden in these patients. METHODS We performed a secondary analysis of qualitative interview data, using framework analysis, informed by NPT, to determine the components of patient “work.” Participants were 47 patients with chronic heart failure managed in primary care in the United Kingdom who had participated in an earlier qualitative study about living with this condition. We identified and examined data that fell outside of the coding frame to determine if important concepts or ideas were being missed by using the chosen theoretical framework. RESULTS We were able to identify and describe components of treatment burden as distinct from illness burden using the framework. Treatment burden in chronic heart failure includes the work of developing an understanding of treatments, interacting with others to organize care, attending appointments, taking medications, enacting lifestyle measures, and appraising treatments. Factors that patients reported as increasing treatment burden included too many medications and appointments, barriers to accessing services, fragmented and poorly organized care, lack of continuity, and inadequate communication between health professionals. Patient “work” that fell outside of the coding frame was exclusively emotional or spiritual in nature. CONCLUSIONS We identified core components of treatment burden as reported by patients with chronic heart failure. The findings suggest that NPT is a theoretical framework that facilitates understanding of experiences of health care work at the individual, as well as the organizational, level. Although further exploration and patient endorsement are necessary, our findings lay the foundation for a new target for treatment and quality improvement efforts toward patient-centered care.read more
Citations
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Determinants of effective heart failure self-care: a systematic review of patients’ and caregivers’ perceptions
Alexander M. Clark,Melisa A. Spaling,Karen Harkness,Judith A. Spiers,Patricia H. Strachan,David R. Thompson,Kay Currie +6 more
TL;DR: A systematic review of 49 studies which examined the views and needs of patients with HF and their caregivers about the nature and determinants of effective HF self-care identifies key drivers of effective self- care.
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Patchy ‘coherence’: using normalization process theory to evaluate a multi-faceted shared decision making implementation program (MAGIC)
TL;DR: The study showed that implementation of shared decision making is more complex than the delivery of patient decision support interventions to patients, a portrayal that often goes unquestioned.
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Improving the normalization of complex interventions: measure development based on normalization process theory (NoMAD): study protocol
Tracy Finch,Tim Rapley,Melissa Girling,Frances S. Mair,Elizabeth Murray,Shaun Treweek,Elaine McColl,Ian Nicholas Steen,Carl May +8 more
TL;DR: A set of NPT-based measures are developed and validated, to be used to improve the implementation of complex healthcare interventions and have the potential to enhance the chances of their implementation, leading to sustained changes in working practices.
Journal ArticleDOI
Factors that lessen the burden of treatment in complex patients with chronic conditions: a qualitative study.
Jennifer L. Ridgeway,Jason S. Egginton,Kristina Tiedje,Mark Linzer,Deborah H. Boehm,Sara Poplau,Djenane Ramalho de Oliveira,Laura Odell,Victor M. Montori,David T. Eton +9 more
TL;DR: Patients attempt to lessen the experience of treatment burden using a variety of personal, social, and health care resources to provide a more complete picture of how patients fit complex self-care into their daily lives.
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Improving the normalization of complex interventions: part 2 - validation of the NoMAD instrument for assessing implementation work based on normalization process theory (NPT)
Tracy Finch,Melissa Girling,Carl May,Frances S. Mair,Elizabeth Murray,Shaun Treweek,Elaine McColl,Ian Nicholas Steen,Clare Cook,Christopher R. Vernazza,Nicola Mackintosh,Samridh Sharma,Gaery Barbery,Jimmy Steele,Tim Rapley +14 more
TL;DR: The NoMAD instrument has good face validity, construct validity and internal consistency, for assessing staff perceptions of factors relevant to embedding interventions that change their work practices.
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