Tres Dias Por Nada

La historia de Juan, paciente peruano con diabetes

Marcia Moreano Sáenz MD1,2, María de los Angeles Lazo MD1,3, Álvaro Taype Rondán MDMiguel Moscoso Porras PT1, J Jaime Miranda MD, MSc, PhD1

1 CRONICAS Center of Excellence in Chronic Diseases, Universidad Peruana Cayetano Heredia, Lima, Peru (www.cronicas-upch.pe)

2 Family Medicine, Universidad Peruana Cayetano Heredia

3 Unidad de Conocimiento y Evidencia (CONEVID), Universidad Peruana Cayetano Heredia, Lima, Peru

En el Perú, el sistema de salud público nacional se caracteriza por ser de difícil acceso para poblaciones de bajo nivel económico, con un sistema de citas deficiente que se traduce en esperas prolongadas, una mala calidad de atención que se limita a la prescripción, y un inadecuado seguimiento de la enfermedad. Esto es especialmente perjudicial para aquellos que sufren de enfermedades crónicas como la diabetes, que requieren evaluaciones continuas y educación al paciente.

Para ilustrar esta situación, exploramos el recorrido de un paciente que debe acceder al sistema de salud público peruano para ser atendido en el Servicio de Endocrinología de un hospital nacional:

Juan, un padre de familia de 56 años de escasos recursos económicos, normalmente atiende sus necesidades de salud en un “puesto de salud” (nombre que designa a los establecimientos de salud del primer nivel de atención en el Perú) y afortunadamente cuenta con el seguro integral de salud (SIS),1 que se otorga en el Perú a pacientes calificados como pobres o extremadamente pobres.

Juan ha sido recientemente diagnosticado de diabetes y el médico del puesto de salud le comunica que debe ser atendido en un hospital nacional de mayor complejidad (Ministerio de Salud de Perú)2 porque las pruebas adicionales y los medicamentos básicos no están disponibles en su puesto. Para ello, le entrega una “hoja de referencia” (formato necesario para la atención en el hospital mediante el SIS). De esta manera, Juan coordina con su familia y pide permiso en su trabajo para realizar el viaje hacia el hospital más cercano, que en este caso le queda a un par de horas de distancia de su hogar. Hasta entonces, deberá adquirir, si cuenta con el dinero necesario, sus medicamentos en una farmacia privada.

El día coordinado, Juan acude al hospital con su “hoja de referencia” para solicitar una cita. Se acerca a la oficina de admisión, en donde después de hacer una cola por 20 minutos, el personal administrativo le indica que lo más pronto que su cita puede ser programada es en dos meses. Juan no tiene otra opción más que esperar esa fecha  pues no cuenta con los recursos económicos necesarios para acceder al sistema de salud privado.

Finalmente llega el día de su cita, ese día sale de su casa a las 6 de la mañana y llega al hospital dos horas más tarde. Como paciente nuevo, presenta sus documentos (hoja de referencia, copia de documento nacional de identidad y copia de la ficha de inscripción SIS) en la ventanilla de admisión. Luego de 30 minutos recibe un número de historia clínica, un carnet de atención, un formato único de atención e instrucciones de ir al área de consultorios.

Al encontrar el consultorio de Endocrinología, Juan se aproxima a la ventanilla de recepción y entrega sus documentos al personal administrativo quien le indica que será llamado para ser atendido de acuerdo al orden de  llegada. Después  de dos horas de espera, Juan es llamado al consultorio, donde le toman medidas de  talla y peso. El médico lo recibe en su consultorio por 15 minutos,  le indica algunos exámenes de laboratorio, le entrega una receta escrita a mano. Juan no entiende para que son los exámenes o que dice la recete pero siente que el médico no tiene tiempo para explicarle. También le da  una cita después de contar con los resultados, cita que muy probablemente tendrá lugar dos meses después. En esta cita, Juan no pudo preguntar sobre su pronóstico, su dieta, uso de ciertos productos “naturales” que le han recomendado sus familiares, y otras inquietudes.

Al salir de la consulta, Juan acude a la farmacia del hospital para recoger sus medicamentos y tiene que esperar  15 minutos para entregar la receta y otros 15 minutos para recibir los medicamentos. Posteriormente acude al laboratorio para realizarse los estudios solicitados pero le indican que los mismos se deben realizar el día siguiente a las siete de la mañana. Finalmente llega a su casa aproximadamente a la 2 de la tarde.

Para poder hacerse los exámenes, Juan debe solicitar permiso en su trabajo por un día más. Al día siguiente, acude al laboratorio. Después de 40 minutos de espera puede entregar la orden médica y pasa a la sala de  toma de muestras, donde es atendido 30 minutos después.  Al terminar se le informa que él o un familiar podrán recoger sus resultados a partir de las 2 de la tarde del día siguiente.

Al finalizar este largo trayecto, podemos concluir que:

  • Juan perdió por lo menos tres días de trabajo, lo cual afecta aún más su ya débil estado financiero.
  • Fue sometido de manera repetida a largos tiempos de espera.
  • Fue atendido brevemente.
  • No ha obtenido información ni educación sobre diabetes y autocuidado de su salud.
  • No ha tenido una evaluación ni completa ni multidisciplinaria.
  • No tendrá un control adecuado de la glucosa, pues en la posta de salud más cercana a su domicilio no cuentan con lo necesario para realizar su monitoreo de glucosa periódico y si cuentan con este recurso el paciente deberá pagar dinero por cada control, ya que su seguro de salud no cubre éste servicio.
  • Deberá esperar aproximadamente dos meses para la siguiente consulta médica.

Si bien este caso es lamentable existen situaciones aún más complicadas. Por ejemplo, si Juan fuera un habitante de una zona rural se enfrentaría a más limitaciones como la falta de personal médico en la posta de salud cercana, la lejanía del hospital más próximo que puede estar a varias horas o incluso días de viaje, y un acceso mucho más limitado a medicamentos, que deberá adquirir en alguna ciudad cercana. Si Juan fuera analfabeto o tuviera un nivel de educación muy escaso tendría mayor dificultad para comprender las instrucciones brindadas y navegar el complejo sistema de salud.

Por otro lado, si Juan contara con los recursos económicos necesarios para acceder al sistema de salud privado, podría obtener una atención médica en menos tiempo (ver figura 1), aunque la calidad de la misma no sea necesariamente superior. Estos datos reflejan las inequidades en el acceso a los servicios de salud que se da en países de bajos y medianos ingresos económicos como el Perú.

 

Capture

* La información para construir la Figura 1 se ha elaborado en base a la técnica de observación participante y tomando como referencia información de dos estudios de investigación3,4

De esta manera es claro que en el manejo de enfermedades crónicas como la diabetes, que requieren educación, un seguimiento estrecho y un manejo multidisciplinario, requiere de manera urgente la identificación de barreras de acceso a la atención (http://www.cronicas-upch.pe/identificando-barreras/) y la implementación de medidas de salud pública que permitan facilitar el acceso al sistema de salud de manera universal, y una atención oportuna, con  la calidad y el respeto que merecen. También revela como las inequidades e ineficiencias del sistema faltan el respeto a la capacidad – limitadísima en muchos casos – que tiene los pacientes mas necesitados para acceder al cuidado medico e implementar el autocuidado.

Agradecimientos: Ana María Castañeda Guarderas y René Rodríguez Gutiérrez por su amable revisión a este artículo.

Referencias

  1. Seguro Integral de Salud. Visitado el 24/03/2015 en el URL: http://www.sis.gob.pe/Portal/index.html
  2. Ministerio de Salud – Perú. Visitado el 24/03/2015 en el URL: http://www.minsa.gob.pe/
  • Instituto Nacional de Estadística e Informática. Encuesta Nacional de Satisfacción de Usuarios del Aseguramiento Universal en Salud 2014. Visitado el 24/03/2015 en el URL: file:///C:/Users/Administrador/Downloads/libroINEI-IMPO%20(1).pdf

Cárdenas María Kathia, Morán Dulce, Beran David, Miranda J Jaime. Identifying the Barriers for Access to Care and Treatment for Arterial Hypertension and Diabetes in Lima, Peru. Executive Summary. Visitado el 25/03/2015 en el URL: http://www.cronicas-upch.pe/wp-content/uploads/2014/08/Identifying-the-Barriers-Lima-Peru.pdf

A Pragmatically Comprehensive Model for Delivering Care to Patients with Multiple Chronic Conditions

Patients with multiple chronic conditions must deal with complex circumstances and significant burdens of treatment and disease. Stakeholders at all levels are invested in finding innovative ways to effectively care for these patients. Here, Dr. Aaron Leppin and colleagues show how Minimally Disruptive Medicine can be operationalized to optimize care for these complex patients. This paper introduces the first conceptualization of a specific care delivery model built upon the theoretical precepts of MDM. (Leppin MDM Healthcare Paper)

Maria Luisa’s Catch-22 and Minimally Disruptive Medicine (Photo essay)

In Joseph Heller’s classic novel Catch-22, the protagonist John Yossarian is a Captain in the Air Force during World War II. Yossarian does not want to fly any more missions as flying could be very dangerous. He reasons that any sane person would not want to fly, however, the only people who do not have to fly are those deemed insane and thus unfit to fly, the catch, the Catch-22, is that those who are insane and want to fly and thus can, but don’t have to, and those are sane don’t want to, but have to.1

Anyway, this story isn’t about an Air Force captain, this is the story of Maria Luisa, a woman stuck in the Catch-22 of health and illness; to live the life she wants to live she must manage her health, but managing her health prevents her from living the life she wants to live.

Maria Luisa, 87, a native of Peru, lives in the last frontier, Alaska. She has 3 children, 13 grandchildren and 12 great grandchildren. She has hypertension and, for the last 5 years, she has been on hemodialysis. Maria Luisa lives with her son, who is her caregiver and also a patient with chronic disease. Three times a week, she wakes up at 5:30 am, fixes some breakfast, and bundles up against the cold, which routinely reaches -10°C. Her son then drives her to the dialysis center at 6 a.m.

When she is not hooked up to the dialysis machine, she enjoys shopping (or window shopping), which also gives her a chance to be active. However, because of her health conditions she often gets short of breath which makes walking (and shopping) more difficult. To try and manage her medical conditions Maria Luisa takes 10 to 13 pills daily, to help organize her medications, Maria Luisa and her son, every Sunday, uses color-coded bottles to arrange her medications according to the day of the week and the time of day of each dose. In addition to this Maria Luisa tries to adhere to a diet that is low in salt, potassium, phosphorus, protein, and water. As a result of this she often copes with this limitation with dietary indiscretions that contribute to worsening of her health and to emergency department visits.

Organizing her medications, attending dialysis, scheduling doctors’ appointments, and adhering to her diet, while helpful to manage her chronic health conditions gives her lots of work; work that is disruptive to the life that Maria Luisa is trying to live in spite of her health conditions – a Catch-22.

Despite these difficulties Maria Luisa has resources she can mobilize to help her manage her health and the work and disruption illness causes. These resources include a loving, supportive family, a resilient personality, and financial resources. These resources are often helpful but, Maria Luisa faces a barrier that many patients face, as English is not her first language. This makes it more difficult for her to self-manage, makes her more isolated in a community with few Spanish speakers, and makes her more dependent on her caregiver, her son.  This barrier to communication has contributed to her difficulties managing her health; specifically she has had trouble communicating her difficulty following her diet.

How can we help Maria Luisa live the life she wants to live, maximizing health and happiness, while minimizing the work and disruption caused by illness? One approach that can help Maria Luisa is Minimally Disruptive Medicine.

abuela

Minimally Disruptive Medicine (MDM) is an approach to medicine that seeks to promote patient goals while right-sizing the work of being a patient to each patient context. MDM aims to manage the workload that the pursuit of health imposes upon people by examining that workload in the context of the patient’s life, their goals, and the capacity they have to implement that workload and thus, minimize the disruption medicine causes in a person’s life allowing them to live the life they want to live. 2

Using a MDM approach what can we do for Maria Luisa? How can we create a healthcare plan that fits for her? These are the questions I asked myself after another dietary indiscretion landed her once again hospitalized in the ICU.

Working with her family and healthcare team in Alaska we designed a plan that we thought would better fit Maria Luisa desires and available capacities.

We redesigned the way Maria Luisa organizes her medications, getting rid of the individual pill bottles and replacing them with two large pillboxes; one for her morning medications and one for her evening medications. This change made it easier and safer for Maria Luisa and her caregiver to organize her medications. In addition, Maria Luisa felt that this new system was easier to use and one that she could implement on her own, thus increasing her self-efficacy and leaving her happy and with a renewed feeling of independence.

In addition to reorganizing her medications, we also consulted with a Peruvian dietician to create a diet that not only was good for Maria Luisa, but also allowed her to enjoy eating once more, thus, reducing the chance of a deterioration in her health due to nonadherence to her prescribed diet. To further facilitate this change we mobilized some of Maria Luisa’s financial capacity and hired someone to help her prepare the food on her new diet.

Finally, in order to make her dialysis better fit into her life we arranged to have her dialysis completed at night rather than during the day. This not only allows Maria Luisa to do things she enjoys during the day, but, now she goes to dialysis at 5pm, gets out at 8pm and feels ready to go to bed. With this change Maria Luisa says she feels more rested and finds that her afternoons are more useful (she has started to knit again!) and her great granddaughters are more likely to visit because she is well rested and not exhausted from dialysis. An additional unexpected benefit is that some of the nurses who assist with dialysis in the evening also speak a bit of Spanish, thus giving Maria Luisa someone to talk to in her native language.

We might not have addressed all of Maria Luisa’s workload issues (ej. scheduling/attending appointments, physical activity) but I am sure that these simple changes have and will continue to make a big impact on her life.

I write about my experience with the hope that someday some young medical graduates (like me) will start thinking about “Maria Luisas” and ask themselves the same question I now cannot stop asking. How can we work with patients to co-create goals for care that respect each patients’ context, history, capacity and goals? Clinicians have met patients with similar stories, in similar catch-22s of illness, healthcare, and life. But this is not, for me, like any other story. This is the story of my abuela, who once again, has helped me find, in minimally disruptive medicine, a good answer.

Ana Castaneda-Guarderas MD @amcguarderas
Research Trainee, KER Unit
Unidad de Conocimiento y Evidencia (CONEVID)

Acknowledgments:

Dr. Castaneda would like to thank Michael R. Gionfriddo Pharm.D for his editorial assistance.

References

1. Heller, Joseph. Catch-22.  Simon & Schuster, 1961. Print.
2. Leppin, A. Minimally Disruptive Medicine, at your service. URL: https://minimallydisruptivemedicine.org/2013/08/23/minimally-disruptive-medicine-at-your-service/. August 2013

Patient Capacity and Constraints in the Experience of Chronic Disease: A systematic review of the qualitative literature protocol

“We are currently undertaking this systematic review of the qualitative literature to gain a more comprehensive view of the elements that make up patient capacity and its constraints. This work underpins the current development of a clinical encounter communication tool to make patient capacity visible and useful in the co-creation of treatment plans (the Instrument for Patient Capacity Assessment, ICAN). We often catalog our systematic reviews in PROSPERO, however, due to the qualitative nature of this project we were unable to do so. We are currently screening full texts, and look forward to sharing this with the Minimally Disruptive Medicine Community upon its completion.” – Kasey Boehmer

Patient Capacity and Constraints in the Experience of Chronic Disease: A systematic review of the qualitative literature protocol

Background

Capacity refers to the available abilities and resources the patient can mobilize to address work demands, in healthcare and in life. Limitations to capacity impact the patient’s “ability or readiness to do work.” 1

For patients, particularly those with chronic conditions, capacity is a finite construct that they must use to access and use healthcare and to enact their self-care, that is, to shoulder the workload of their treatment. This capacity is the same set of available abilities and resources that is used to enact their life roles, such as taking a child to daycare, and relate to their families, friends, and colleagues.

This capacity can be limited by aspects of poor or worsening health, the “burden of illness,” or by limited capabilities resulting from the patient’s life context. Through past research and clinical experience, our research unit has developed a working list of six domains of patient capacity: Personal, Physical, Mental, Social, Financial, and Environmental. Domains of capacity which are limited by the burden of illness are mental and physical capacity. Those that can be limited by scarcity, or difficulties in life context, are personal (busy, burnout, literacy), social (isolation), financial (poverty), and environmental (far distances, poor roads, limited communications).

Within each domain of capacity, the set of resources or abilities can be limited by specific factors that must be overcome. In health care, we can think of these limiters manifesting as barriers to the patient’s ability or resources to access and use health care services or to enact self-care practices. This relationship between a patient’s capacity to shoulder workload and its impact upon patients’ ability to access and use healthcare or enact self-care is described in the Cumulative Complexity Model (CuCoM). While strides have been made to characterize the patient’s workload as manifested in their burden of treatment,2 as well as to create a measure to capture burden of treatment,3 4 a comprehensive view of patient capacity is lacking from the literature.

Aims

The primary aim of this review will be to identify qualitative descriptions of deficits in capacity or barriers that patients and experience in their lives that affect their ability to access or use healthcare or to enact self-care.

The purpose of this review is to inform the development of a tool for the clinical encounter that creates a conversation that quickly elicits the deficits in capacity that a patient with one or more chronic conditions faces in their daily lives to inform the development and modification of treatment plans. We do not anticipate that this review will create an exhaustive list of every domain and sub-domain of capacity that can be activated or mobilized, but yet that it will illuminate the practical deficits in capacity that must be considered between patients with chronic conditions, their caregivers, and clinicians.

Methods

To answer this question, we will conduct a systematic review of the qualitative literature from four databases (MEDLINE, EMBASE, Psychinfo, and CINAHL) and an environmental scan. The conduct of this review will be built upon much of the methodology described previously by Gallacher et al., for conducting qualitative systematic reviews of a novel construct, treatment burden.5

Our approach will be grounded in the Cumulative Complexity Model, and we will organize our findings based upon the six domains of capacity our research team has identified. Any barriers that we identify that fit outside the bounds of any of the six domains will be grouped into an “other” category, and will be analyzed separately to understand their fit with the model and its component domains.

Our first step will be to conduct scoping searches of the qualitative literature in order to pick up key articles that fit our inclusion criteria; this process will identify papers and key terms, with which reviewers should be familiar. As described previously by Gallacher et al., the scoping search includes ‘berry picking,’ in which groups of papers are discovered together, a preliminary search of databases, use of the ‘related articles’ function in PubMed, and consultation with experts in the field.5

We will include papers published in or after the year 2000 and use qualitative methodology through direct patient and/or caregiver contact through interactions such as in-depth interviews, focus groups, or ethnographic observations. Papers will be excluded if their primary unit of analysis is not the patient (i.e., patient-provider team, family, caregiver as a surrogate for the patient). We will exclude papers that use strictly quantitative methodology to answer their research question. Papers that are mixed methods will be included if their results presented give priority to the qualitative patient experience and seeks to triangulate the quantitative and qualitative data.6 Mixed methods papers that give priority to quantitative design and reporting, particularly following the instrument design model or the data transformation model will be excluded.6

We will include articles about patients’ experience with one or more chronic conditions. We will define chronic conditions according to the AHRQ definition:  a condition “that lasts 12 months or more and either limits self-care or independent living or requires ongoing medical intervention.” We will also include studies that focus not specifically on experience with a specific condition but also the experience of living with comorbidities and/or multimorbidity.

While papers will be excluded if the patient is not the primary unit of analysis, will account for in our analysis both patient accounts of barriers related to accessing and using healthcare or enacting self-care and that of their “informal caregivers,” where they appear in the included selection. By informal caregivers, we intend to capture people that interact with the patient regularly to assist with their care or activities of daily living, and are not paid for this role. Most often, the role of an informal caregiver is played by a spouse, family member, or friend.

We will include papers that discuss barriers the patient experience accessing and using health care; access and use includes both the availability of the services as well as the ability to realize the use of available services when it is needed or desired.7 We will also be looking to synthesize papers that discuss self-care activities required by the patient for the management of one or more of their chronic conditions or for the management of their overall health and wellness in the context of living with chronic conditions. These include, but are not limited to: activities that promote physical and psychological health, engaging with healthcare providers and adherence, monitoring and decision making.8 We will interpret barriers to mean any part of the patient experience that delay, prevent, or minimize their ability to access or use healthcare or enact self-care.

See appendix for full search strategy.

Screening

Papers will be screened in three stages: 1) after the initial search to review titles which will be retained; 2) abstract screening; and 3) full text screening. In each of these stages, each paper will be screened independently by two reviewers; all disagreements will be resolved by a third party. Papers will be excluded only if the two reviewers exclude for the same reason; all others will be sent to the third party for the final decision.

Data extraction

Data will be extracted using Distiller SR. We will extract at what time point in the patients’ disease trajectory the data were collected (i.e., at onset, treatment initiation, after living with the disease for specified period, etc.), the research question, theoretical frameworks used, sampling procedures, data collection method, data analysis method, overall conclusion of the study, limitations, and conflicts of interest.

Quality Appraisal

During the data extraction phase, we will also conduct a quality appraisal. Because qualitative research can be a broad and complex set of literature, and the methods for its evaluation diverse, we have selected a quality appraisal system previously published.9 This appraisal is a set of 16 questions that can be answered quickly on a 1 – 7 scale and covers clarity of research question, sampling, and methods; analytical practices such as iteration and grounding; reporting practices such as disclosure of internal processes and investigators’ frameworks; and impact on readers, participants, and theory. The quality appraisal will inform our analysis and discussion, rather than to classify or exclude papers.

Data Analysis

After full text screening and data extraction, PDFs will be imported into Nvivo 10. We will use three analysis techniques for metasynthesis of included studies: event timeline (relation to onset/diagnosis and the specific work trying to be accomplished in that point), Imported Concepts (not coming from the data but related and used to provide synthesis), Taxonomic Analysis (extraction of key findings and coding the relationships between components). If and where appropriate, we will provide a metasummary of the count of the occurrence of domains of capacity.

Results and Discussion sections will then be coded in a first round to import concepts from CuCoM, and those that identify descriptions of capacity deficits and barriers that patients encounter or must overcome when they attempt to access or use health care or enact their self-care. The initial round of coding will also import the capacity domains: Physical, Mental, Personal, Social, Financial, and Environmental. An additional coding category of “other” will be included to ensure that barriers that patients encounter but do not fit as a deficit in a specific domain are not excluded, but instead explored further. Finally, we will import the concept of “lifespace,” i.e., where in the patient’s life are they encountering these barriers (home, office, errands, healthcare, etc). The last concept will be particularly important in bringing forth capacity barriers that occur outside the healthcare lifespace for patients.

While CuCom will guide our underlying analysis, there is a lack of comprehensive understanding of patient capacity in the literature. Furthermore, how capacity operationalizes itself in the lives of patients and within the window of the clinical encounter is unclear. Our taxonomic analysis is intended to provide insight into some of these underlying questions for the development of our communication tool. We will conduct a second round of coding to examine the relationships between the imported concepts (CuCoM and capacity domains) within papers, as well as broader links between findings within all included papers.

Finally, we will attempt to create an event timeline of where in relation to diagnosis of a condition (or conditions) patients experience their barriers. Studies that are not specific in this regard will not be plotted. Our purpose of this part of the analysis is underpinned by our understanding of the Normalization Process Theory, and how patients normalize work that they do for their treatment.10 However, we do not understand precisely how patient capacity affects their ability to normalize treatment, and a visual appraisal of where this occurs may help further our understanding.

Bibliography

  1. Shippee ND, Shah ND, May CR, Mair FS, Montori VM. Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol 2012;65(10):1041-51.
  2. Ridgeway JL, Egginton JS, Tiedje K, Linzer M, Boehm D, Poplau S, et al. Factors that lessen the burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Prefer Adherence 2014;8:339-51.
  3. Eton DT, Elraiyah TA, Yost KJ, Ridgeway JL, Johnson A, Egginton JS, et al. A systematic review of patient-reported measures of burden of treatment in three chronic diseases. Patient Relat Outcome Meas 2013;4:7-20.
  4. Eton DT, Ramalho de Oliveira D, Egginton JS, Ridgeway JL, Odell L, May CR, et al. Building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Relat Outcome Meas 2012;3:39-49.
  5. Gallacher K, Jani B, Morrison D, Macdonald S, Blane D, Erwin P, et al. Qualitative systematic reviews of treatment burden in stroke, heart failure and diabetes – methodological challenges and solutions. BMC Med Res Methodol 2013;13:10.
  6. Creswell JW, Fetters MD, Ivankova NV. Designing a mixed methods study in primary care. Ann Fam Med 2004;2(1):7-12.
  7. Gulliford M, Figueroa-Munoz J, Morgan M, Hughes D, Gibson B, Beech R, et al. What does ‘access to health care’ mean? J Health Serv Res Policy 2002;7(3):186-8.
  8. Bayliss EA, Steiner JF, Fernald DH, Crane LA, Main DS. Descriptions of barriers to self-care by persons with comorbid chronic diseases. Ann Fam Med 2003;1(1):15-21.
  9. Stiles WB. Evaluating Qualitative Research. Evid Based Mental Health 1999;2:99-101.
  10. Gallacher K, May CR, Montori VM, Mair FS. Understanding patients’ experiences of treatment burden in chronic heart failure using normalization process theory. Ann Fam Med 2011;9(3):235-43.

Appendix: Search Strategies

MEDLINE

  1. *kidney failure, chronic/ or *”end-stage renal disease”/ or *”end-stage kidney disease”/ or *esrd/ or *eskd/ or *hemodialysis/ or (kidney failure, chronic or “end-stage renal disease” or “end-stage kidney disease” or esrd or eskd or hemodialysis).ti.
  2. exp *diabetes/ or *diabet*/ or (diabetes or diabet*).ti.
  3. exp *Heart Failure/
  4. 3 or “cardiac failure”.ti. or “heart failure”.ti.
  5. exp *neoplasms/ or cancer*.ti.
  6. exp *cognition disorders/ or exp *dementia/ or dement*.ti. or alzheimer*.ti. or (cognitive* adj3 impair*).ti.
  7. *hypertension/ or “high blood pressure”.ti. or hyperten*.ti.
  8. exp *schizophrenia/ or schizophren*.ti.
  9. *autism spectrum disorders/ or autism*.ti. or autistic*.ti.
  10. exp *Substance-Related Disorders/
  11. 10 or (substance adj abuse*).ti. or alcoholi*.ti.
  12. exp *Hyperlipidemias/
  13. 12 or hyperlipid*.ti. or hypercholesterol*.ti.
  14. exp *arrhythmias, cardiac/ or exp *coronary disease/ or exp *myocardial infarction/
  15. 14 or coronary.ti. or lvad*.mp. or *heart assist devices/ or “assist device*”.mp. or arrhythmia*.ti. or fibrillation*.ti. or tachycardia*.ti. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  16. depress*.ti. or exp *depression/ or exp *depressive disorders/
  17. exp *osteoporosis/ or osteopor*.ti.
  18. exp *arthritis/ or arthrit*.ti. or osteoarthr*.ti.
  19. exp *HIV Infections/
  20. 19 or aids.ti. or hiv.ti. or “acquired immunodeficien*”.ti.
  21. exp *hepatitis/ or hepatitis*.ti.
  22. *stroke/ or stroke*.ti. or “cerebrovascular accident*”.ti. or ((cerebral or intracranial) adj3 (thrombo* or infarct* or hemorrhag*)).ti.
  23. 1 and (2 or 4 or 5 or 6 or 7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  24. 2 and (4 or 5 or 6 or 7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  25. 4 and (5 or 6 or 7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  26. 5 and (6 or 7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  27. 6 and (7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  28. 7 and (8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  29. 8 and (9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  30. 9 and (11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  31. 11 and (13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  32. 13 and (15 or 16 or 17 or 18 or 20 or 21 or 22)
  33. 15 and (16 or 17 or 18 or 20 or 21 or 22)
  34. 16 and (17 or 18 or 20 or 21 or 22)
  35. 17 and (18 or 20 or 21 or 22)
  36. 18 and (20 or 21 or 22)
  37. 20 and (21 or 22)
  38. 21 and 22
  39. or/28-38
  40. (burden* adj2 (treat* or therap*)).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  41. Activities of daily living/ or ADL.mp. or health behavior/ or health, knowledge, attitudes, practice/ or lifestyle.mp. or “life style”.mp. or palliat*.mp. or patient education as topic/ or “self care”.mp. or “self manage*”.mp. or barthel*.mp. or disabilit*.mp. or disabled*.mp. or “work capacity”.mp. or “functional disability*”.mp. or “functional limit*”.mp. or fatigue*.mp. or balance*.mp. or falls.mp. or falling.mp. or severity.mp. or falls, accidental/ or “social support”.mp. or supportive.mp. or family.mp. or interpersonal*.mp. or friend*.mp. or companion*.mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  42. (Mobility or transportation* or driving or walk* or gait or travel*).mp. or automobile driving/ or mobility limitation/ or tasks.mp. or work*.mp. or “job loss”.mp. or “loss of control”.mp. or locus of control/ or adaptation*.mp. or unemploy*.mp. or “self esteem”.mp. or independen*.mp. or dependent.mp. or “life chang*”.mp. or pleasure*.mp. or fear*.mp. or anxious.mp. or anxiety.mp. or leisure*.mp. or medication adherence/ or cope*.mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  43. coping.mp. or physician-patient relations/ or communicat*.mp. or partnership.mp. or socioeconomic*.mp. or psychosocial*.mp. or attitude*.mp. or acceptance of health care/ or acceptance.mp. or denial.mp. or choice*.mp. or resilien*.mp. or mobiliz*.mp. or mobilis*.mp. or “social conflict*”.mp. or “physical status”.mp. or “physical function*”.mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  44. (Depress* or lonely or loneliness or rehabilitat* or “physical therapy” or stress* or disrupt* or recover* or challeng* or negotiat* or goal* or safe or unsafe or neighborhood or “self efficacy” or social* or isolat*).mp. or social isolation/ or costs.mp. or cost of illness/ or “drug costs”.mp. or insurance.mp. or insured.mp. or schedule*.mp. or appointment*.mp. or satisfaction.mp. or satisfy*.mp. or dissatisf*.mp. or suffer*.mp. or delegate*.mp. or qol.mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  45. (“quality of life” or “well-being” or dysfunction* or community* or work or intimacy or intimate or emotion* or mood* or unmet or preference* or participat* or “side effect*” or emotion*).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  46. Continuity of patient care/ or accessib*.mp. or needs.mp. or autonomy.mp. or (patient adj2 (care or experience* or understand* or expectation* or perspective* or perception* or satisfaction)).mp. or motivat*.mp. or incentiv*.mp. or disincentive*.mp. or compliant.mp. or noncompliant*.mp. or adheren*.mp. or nonadheren*.mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  47. (barrier* or disparit* or language* or education* or experiences or criminal or crime or (low* adj income*) or burden* or disjoint* or access).mp. or health care accessibility/ or distress.mp. or frustrat*.mp. or knowledge*.mp. or beliefs.mp. or expens*.mp. or “out of pocket”.mp. or spending.mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  48. (multimorbid* or comorbid* or morbidities).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  49. (multiple adj3 (chronic or illness* or morbid* or disease* or condition*)).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  50. ((multi or co) adj morbid*).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  51. “more chronic”.mp.
  52. or/48-51
  53. (“action research” or ethnograph* or ethmolog* or “grounded theory” or (qualitative adj2 (study or studies or data or evidence or synthesis or investigation)) or naturalistic or phenomenolog* or ((semistructured or motivational or structured) adj interview*) or “focus group*” or narrative* or narratolog* or “discourse analysis” or “content analysis” or “constant compar*” or “field stud*” or ((purposive or cluster* or snowball or convenience) adj2 sampl*) or (self adj report*)).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  54. “data saturation”.mp. or qualitative research/ or naturalistic.mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  55. (audiotap* or videotap* or audiorecord* or videorecord*).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  56. ((audio or video) adj (record* or tape* or taping)).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  57. or/53-56
  58. 39 and 57
  59. or/40-47
  60. 52 and chronic*.mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  61. 57 and 60
  62. (58 or 61) and (59 or burden*.mp. or complex*.mp. or theme*.mp.) [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
  63. limit 62 to (english language and yr=”2000 – 2014″)
  64. 52 and 63

EMBASE

  1. *kidney failure, chronic/ or *”end-stage renal disease”/ or *”end-stage kidney disease”/ or *esrd/ or *eskd/ or *hemodialysis/ or (kidney failure, chronic or “end-stage renal disease” or “end-stage kidney disease” or esrd or eskd or hemodialysis).ti.
  2. exp *diabetes/ or *diabet*/ or (diabetes or diabet*).ti.
  3. exp *Heart Failure/
  4. 3 or “cardiac failure”.ti. or “heart failure”.ti.
  5. exp *neoplasms/ or cancer*.ti.
  6. exp *cognition disorders/ or exp *dementia/ or dement*.ti. or alzheimer*.ti. or (cognitive* adj3 impair*).ti.
  7. *hypertension/ or “high blood pressure”.ti. or hyperten*.ti.
  8. exp *schizophrenia/ or schizophren*.ti.
  9. *autism spectrum disorders/ or autism*.ti. or autistic*.ti.
  10. exp *Substance-Related Disorders/
  11. 10 or (substance adj abuse*).ti. or alcoholi*.ti.
  12. exp *Hyperlipidemias/
  13. 12 or hyperlipid*.ti. or hypercholesterol*.ti.
  14. exp *arrhythmias, cardiac/ or exp *coronary disease/ or exp *myocardial infarction/
  15. 14 or coronary.ti. or lvad*.mp. or *heart assist devices/ or “assist device*”.mp. or arrhythmia*.ti. or fibrillation*.ti. or tachycardia*.ti. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  16. depress*.ti. or exp *depression/ or exp *depressive disorders/
  17. exp *osteoporosis/ or osteopor*.ti.
  18. exp *arthritis/ or arthrit*.ti. or osteoarthr*.ti.
  19. exp *HIV Infections/
  20. 19 or aids.ti. or hiv.ti. or “acquired immunodeficien*”.ti.
  21. exp *hepatitis/ or hepatitis*.ti.
  22. *stroke/ or stroke*.ti. or “cerebrovascular accident*”.ti. or ((cerebral or intracranial) adj3 (thrombo* or infarct* or hemorrhag*)).ti.
  23. 1 and (2 or 4 or 5 or 6 or 7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  24. 2 and (4 or 5 or 6 or 7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  25. 4 and (5 or 6 or 7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  26. 5 and (6 or 7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  27. 6 and (7 or 8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  28. 7 and (8 or 9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  29. 8 and (9 or 11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  30. 9 and (11 or 13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  31. 11 and (13 or 15 or 16 or 17 or 18 or 20 or 21 or 22)
  32. 13 and (15 or 16 or 17 or 18 or 20 or 21 or 22)
  33. 15 and (16 or 17 or 18 or 20 or 21 or 22)
  34. 16 and (17 or 18 or 20 or 21 or 22)
  35. 17 and (18 or 20 or 21 or 22)
  36. 18 and (20 or 21 or 22)
  37. 20 and (21 or 22)
  38. 21 and 22
  39. or/28-38
  40. (burden* adj2 (treat* or therap*)).mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  41. Activities of daily living/ or ADL.mp. or health behavior/ or health, knowledge, attitudes, practice/ or lifestyle.mp. or “life style”.mp. or palliat*.mp. or patient education as topic/ or “self care”.mp. or “self manage*”.mp. or barthel*.mp. or disabilit*.mp. or disabled*.mp. or “work capacity”.mp. or “functional disability*”.mp. or “functional limit*”.mp. or fatigue*.mp. or balance*.mp. or falls.mp. or falling.mp. or severity.mp. or falls, accidental/ or “social support”.mp. or supportive.mp. or family.mp. or interpersonal*.mp. or friend*.mp. or companion*.mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  42. (Mobility or transportation* or driving or walk* or gait or travel*).mp. or automobile driving/ or mobility limitation/ or tasks.mp. or work*.mp. or “job loss”.mp. or “loss of control”.mp. or locus of control/ or adaptation*.mp. or unemploy*.mp. or “self esteem”.mp. or independen*.mp. or dependent.mp. or “life chang*”.mp. or pleasure*.mp. or fear*.mp. or anxious.mp. or anxiety.mp. or leisure*.mp. or medication adherence/ or cope*.mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  43. coping.mp. or physician-patient relations/ or communicat*.mp. or partnership.mp. or socioeconomic*.mp. or psychosocial*.mp. or attitude*.mp. or acceptance of health care/ or acceptance.mp. or denial.mp. or choice*.mp. or resilien*.mp. or mobiliz*.mp. or mobilis*.mp. or “social conflict*”.mp. or “physical status”.mp. or “physical function*”.mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  44. (Depress* or lonely or loneliness or rehabilitat* or “physical therapy” or stress* or disrupt* or recover* or challeng* or negotiat* or goal* or safe or unsafe or neighborhood or “self efficacy” or social* or isolat*).mp. or social isolation/ or costs.mp. or cost of illness/ or “drug costs”.mp. or insurance.mp. or insured.mp. or schedule*.mp. or appointment*.mp. or satisfaction.mp. or satisfy*.mp. or dissatisf*.mp. or suffer*.mp. or delegate*.mp. or qol.mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  45. (“quality of life” or “well-being” or dysfunction* or community* or work or intimacy or intimate or emotion* or mood* or unmet or preference* or participat* or “side effect*” or emotion*).mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  46. Continuity of patient care/ or accessib*.mp. or needs.mp. or autonomy.mp. or (patient adj2 (care or experience* or understand* or expectation* or perspective* or perception* or satisfaction)).mp. or motivat*.mp. or incentiv*.mp. or disincentive*.mp. or compliant.mp. or noncompliant*.mp. or adheren*.mp. or nonadheren*.mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  47. (barrier* or disparit* or language* or education* or experiences or criminal or crime or (low* adj income*) or burden* or disjoint* or access).mp. or health care accessibility/ or distress.mp. or frustrat*.mp. or knowledge*.mp. or beliefs.mp. or expens*.mp. or “out of pocket”.mp. or spending.mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  48. (multimorbid* or comorbid* or morbidities).mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  49. (multiple adj3 (chronic or illness* or morbid* or disease* or condition*)).mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  50. ((multi or co) adj morbid*).mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  51. “more chronic”.mp.
  52. or/48-51
  53. (“action research” or ethnograph* or ethmolog* or “grounded theory” or (qualitative adj2 (study or studies or data or evidence or synthesis or investigation)) or naturalistic or phenomenolog* or ((semistructured or motivational or structured) adj interview*) or “focus group*” or narrative* or narratolog* or “discourse analysis” or “content analysis” or “constant compar*” or “field stud*” or ((purposive or cluster* or snowball or convenience) adj2 sampl*) or (self adj report*)).mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  54. “data saturation”.mp. or qualitative research/ or naturalistic.mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  55. (audiotap* or videotap* or audiorecord* or videorecord*).mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  56. ((audio or video) adj (record* or tape* or taping)).mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  57. or/53-56
  58. 39 and 57
  59. or/40-47
  60. 52 and chronic*.mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  61. 57 and 60
  62. (58 or 61) and (59 or burden*.mp. or complex*.mp. or theme*.mp.) [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  63. limit 62 to (english language and yr=”2000 – 2014″)
  64. 52 and 63
  65. 64 and (interview* and (“focus group” or qualitative* or sampl* or theme* or thematic*)).mp. [mp=title, abstract, subject headings, heading word, drug trade name, original title, device manufacturer, drug manufacturer, device trade name, keyword]
  66. information processing/ or content analysis/ or data synthesis/ or discourse analysis/ or thematic analysis/
  67. 64 and 66
  68. exp interview/
  69. 64 and 68
  70. 64 and expectation/
  71. 64 and (personal experience/ or patient expectation/)
  72. 65 or 67 or 69 or 70 or 71

PsycInfo

  1. qualitative research/ or grounded theory/ or interviews/
  2. exp Life Experiences/ or lived experience.mp.
  3. content analysis/ or discourse analysis/
  4. exp Chronic Illness/
  5. ((multi or multiple) adj3 (chronic* or morbid*)).mp. [mp=title, abstract, heading word, table of contents, key concepts, original title, tests & measures]
  6. exp Comorbidity/ or multimorbid*.mp.
  7. or/1-3
  8. 7 and (4 or 5 or 6)
  9. exp Neoplasms/
  10. exp memory disorders/ or exp brain disorders/ or exp cognitive impairment/
  11. exp kidney diseases/
  12. exp diabetes mellitus/
  13. exp heart disorders/
  14. exp schizophrenia/
  15. exp Autism/
  16. exp major depression/
  17. exp Osteoporosis/
  18. exp Hepatitis/
  19. exp Cerebrovascular Accidents/ or exp Cerebral Ischemia/
  20. exp hypertension/
  21. 9 and (10 or 11 or 12 or 13 or 14 or 15 or 16 or 17 or 18 or 19 or 20)
  22. 10 and (11 or 12 or 13 or 14 or 15 or 16 or 17 or 18 or 19 or 20)
  23. 11 and (12 or 13 or 14 or 15 or 16 or 17 or 18 or 19 or 20)
  24. 12 and (13 or 14 or 15 or 16 or 17 or 18 or 19 or 20)
  25. 13 and (14 or 15 or 16 or 17 or 18 or 19 or 20)
  26. 14 and (15 or 16 or 17 or 18 or 19 or 20)
  27. 15 and (16 or 17 or 18 or 19 or 20)
  28. 16 and (17 or 18 or 19 or 20)
  29. 17 and (18 or 19 or 20)
  30. 18 and (19 or 20)
  31. 19 and 20
  32. or/21-31
  33. 7 and 32
  34. 8 or 33
  35. limit 34 to (english language and yr=”2000 – 2015″)

CINAHL

S18 S11 AND S15 AND S17 Limiters – Published Date: 20000101-20141231; English Language; Peer Reviewed; Research Article; Exclude MEDLINE records; Language: English
Search modes – Boolean/Phrase
Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
37
S17 (MH “Patient Compliance+”) Limiters – Published Date: 20000101-20141231; English Language; Peer Reviewed; Research Article; Exclude MEDLINE records; Language: English
Search modes – Boolean/Phrase
Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
1,686
S16 S11 AND S15 Limiters – Published Date: 20000101-20141231; English Language; Peer Reviewed; Research Article; Exclude MEDLINE records; Language: English
Search modes – Boolean/Phrase
Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
164
S15 S12 OR S13 OR S14 Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
153,506
S14 (MH “Health Behavior+”) OR (MH “Health Behavior (Iowa NOC) (Non-Cinahl)+”) OR (MH “Health Promotion+”) OR (MH “Health Seeking Behaviors (NANDA)+”) Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
73,983
S13 (MH “Life Style+”) OR (MH “Life Style, Sedentary”) OR (MH “Life Style Changes”) Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
100,936
S12 (MH “Altered Activities of Daily Living (NANDA) (Non-Cinahl)+”) OR (MH “Self Care: Activities of Daily Living (Iowa NOC)”) OR (MH “Self-Care: Instrumental Activities of Daily Living (Iowa NOC)”) OR (MH “Activities of Daily Living (Saba CCC)”) OR (MH “Activities of Daily Living Alteration (Saba CCC)”) OR (MH “Instrumental Activities of Daily Living (Saba CCC)”) OR (MH “Instrumental Activities of Daily Living Alteration (Saba CCC)”) OR (MH “Activities of Daily Living+”) Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
29,478
S11 S5 AND S10 Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
4,619
S10 S6 OR S7 OR S8 OR S9 Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
53,065
S9 (MH “Chronic Disease”) Limiters – Published Date: 20000101-20141231
Search modes – Boolean/Phrase
Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
24,451
S8 multimorbid* OR comorbid* OR “co-occurring” Limiters – Published Date: 20000101-20141231
Search modes – Boolean/Phrase
Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
29,963
S7 (MH “Comorbidity”) Limiters – Published Date: 20000101-20141231
Search modes – Boolean/Phrase
Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
20,417
S6 “multimorbidity” Limiters – Published Date: 20000101-20141231
Search modes – Boolean/Phrase
Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
164
S5 S1 OR S2 OR S3 Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
152,124
S4 (MH “Cancer Patients”) OR (MH “Cardiac Patients”) Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
20,726
S3 (MH “Thematic Analysis”) OR (MH “Semantic Analysis”) OR (MH “Content Analysis”) OR (MH “Constant Comparative Method”) Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
44,547
S2 (MH “Qualitative Studies+”) Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
68,311
S1 (MH “Interviews+”) Search modes – Boolean/Phrase Interface – EBSCOhost Research Databases
Search Screen – Advanced Search
Database – CINAHL with Full Text
118,309

Out with self-management support and in with social network involvement?

Is it time to dump the individualism of self- management support and replaces with a focus on social network involvement which expands with need and saves costs?

By Anne Rogers (University of Southampton)

anne_rogers-2

Minimally Disruptive Medicine is described here in earlier entries to this blog as a service-driven approach to care, co-created with patients (as is the best experience at any service), that makes sense for patients and meets their goals with evidence-based approaches, in a manner consistent with their needs and preferences.

Self-care is often seen as part of that aspiration for co-creation with service providers and has been promoted extensively as part of models encouraging better chronic illness management. The predominant vision for building and enacting self- management capacity has tended to be predicated on the fashioning of peoples’ engagement with this agenda through appeals to normative lifestyles and desirable behaviours.

The literature is replete with references to the focus of self management encouraging the “resourceful patient” as one who should accept responsibility. The whole agenda around self management has been accompanied by a proliferation of terms representing an idealized self-managing individual (“empowered,” “autonomous.” “future,” “expert,” “activated,” “wireless,” “co-producer,” or “flat pack patient”) in the pursuit of confident knowledgable patients practicing self management. In line with this there is an almost exclusive focus on individualistic outcomes such as self-efficacy and patient activation.

This perspective has not only generated a set of interventions which have produced an equivocal evidence base for efficacy, but has masked the power of connections and being linked into networks which provide access to the support that people value and engage with as part of everyday life.

Our recent work in this area at the Universities of Southampton and Manchester indicates that current ways and assumptions of self-management support need to change.

Social network members and dynamics play an important role in the division of labour and the meeting of needs for those living with a long-term condition. We took a network approach to explore self-management support conceptualising it as types of illness ‘work’ undertaken within peoples’ social networks. 300 people from deprived areas and with chronic illnesses took part in a survey conducted in 2010 in the North West of England. A concentric circles diagram was used as a research tool with which participants identified 2,544 network members who contributed to illness management. The results provide an articulation of how social network members are substantially involved in illness management.

Our key findings:

  • Partners and close family make the highest contributions to supporting self-managment but there is also evidence of inputs from a wide range of relationships. Network member characteristics (type of relationship, proximity, frequency of contact) impact on the amount of illness work undertaken in peoples’ networks. In networks with ‘no partner’ other people tend to contribute more in the way of illness related work than in networks with a partner indicating a degree of substitutability between differently constituted networks and that the level and type of input by different members of a network may change according to circumstances.
  • Pets in networks have unique qualities and are not simply substitutes for human relationships in long-term condition management. Pets contribute mostly to managing emotions (emotional work), to enhancing a sense of self identity (biographical work) and to a lesser extent practical tasks (everyday work). Pets mediate relationships for people living with a long-term condition through very weak ties with others in domestic and community settings.
  • The amount of work undertaken by ‘weak ties’ is similar to but less than that of stronger ties. Weaker ties appear more durable and less liable to loss over time than stronger ties. ‘Weak ties’ enable the moral positioning of the self-managing ‘self’ and seem to act on the basis of a strong sense of reciprocity. Weak ties act as an acceptable bridge between a sense of personal agency and control and the need for external support because it is possible to construct a sense of moral acceptability through reciprocal exchange. Access to weak tie resources needs to be taken into account when considering the ways in which systems of health implementation for chronic illness are designed and delivered.
  • Our most recent analysisexplored  how people’s social relationships alongside the availability of social capital operate in their local community . Over a one-year period, we found that social involvement with a broad variety of people and groups supports peoples’ own management of their condition and contributes to physical and mental well-being. Evidence of a positive care law was indicated by the fact that Personal networks input was found to expand in accordance with health needs so as to provide assistance in coping. Network support was found to substitute to an extent for formal care and provide substantial savings in traditional service utilisation costs.

We need to recognise the importance of social networks and social involvement and find ways to incorporate such knowledge into future ways of managing long term conditions. Support for self-management which achieves desirable outcomes should be seen less as an individualised set of actions and behaviour and more as a social network phenomenon. Interventions and strategies for chronic illness management require a greater focus on harnessing and sustaining the capacity of networks and the importance of social involvement with community groups and resources for producing a more desirable and cost-effective way of supporting long-term illness management.

______

Learn more about the work of Dr. Rogers’ and her team here:

http://www.clahrc-wessex.nihr.ac.uk/our-six-research-themes/engagement-with-self-directed-support

http://eu-wise.com/eugenie-the-eu-wise-intervention/