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Category Archives: Qualitative research

Care coordination for people living with multimorbidity: An Australian perspective

By Annette Peart

Two recent papers highlight the importance of person-centred care in working with people living with multimorbidity. In Melbourne, Australia, we explored the experiences of care from the perspective of people living with multimorbidity, and the health care professionals who work with them.
Hospital Admission Risk Program (HARP) services are centred on a period of intensive care coordination, comprising comprehensive assessment and care planning, specialist medical and GP management, and a self-management approach. Care coordinators support clients to navigate the health care system and services, act as a point of contact as clients complete their care plan, link them to specialised assessment and services, and support self-management.

The first paper [1] reports on a study examining the care experience of people living with multimorbidity enrolled in the HARP. We wanted to understand their experience of planning and enacting their care, using information to make care decisions, as well as identify characteristics of care of importance to them.

The participants were HARP clients who recently received a program of care coordination. They were diverse in age, gender, country of birth, number of health conditions, and length of time on the program. Of the 23 clients we interviewed, 10 were from the heart failure stream, nine from the complex psychosocial stream, and four from the chronic respiratory condition stream.

We used phenomenology as a framework for this study. Our interpretative phenomenological analysis of the experiences of care identified three master themes. Firstly, clients perceived the benefits of expert guidance and knowledge gained from their care coordinators on their health management, including navigating the health system and changing some health behaviours. Secondly, following a period to get to know the care coordinators, who provided knowledge, helped with practical tasks, and understood the clients’ needs, a relationship of trust was formed alongside a sense of a protective circle of care. Finally, clients felt it was important for them to be treated like a person, not a patient, and described experiencing their care as personalised – tailored – to them and their needs.

The second paper [2] reports on a study exploring the experience of the HARP health care professionals providing care coordination and related services to the clients. They were employed by the health service to deliver care coordination, nursing, allied health, or medical services. We interviewed those with considerable experience in HARP.
Participants were diverse in professional backgrounds and years of experience. Of the 18 participants, 11 had qualifications in nursing, four in allied health or medicine, and three were in nonclinical leadership or management roles. Of those with a clinical background, they worked across one or a combination of the streams: chronic heart failure (six participants), complex psychosocial (four), chronic respiratory (one), and across two or three streams (four). Their experience working as a health care professional ranged from 5–35 years, and working in the HARP ranged from 6 months to 13 years.

We used interpretative phenomenological analysis to identify four themes from descriptions of providing care, identifying and responding to a person’s needs, and the barriers and facilitators to providing person-centred care. First, participants spoke about providing care focusing on the client. This was not without its challenges, including perceptions of limitations in the care provided, especially if prioritising clients’ immediate needs and preferences. Second, they described having the time to listen and hear clients’ stories, perceived as helpful to understand client values and clients feeling they are heard. Third, participants spoke of techniques to engage clients in the service, including helping clients navigate the system. The fourth master theme involved participants describing how they viewed the client beyond the clinical features of a disease and as a whole person.

The models of care for programs such as the HARP espouse person-centred care as a key principle. However, these papers highlight the value of a new conceptualisation from the perspective of relationship-centred care. Both participant groups, clients, and health care professionals, noted the fundamental importance of developing a relationship as the basis for providing care.

Qualitative approaches to understanding the care experience are emerging, yet often provide superficial descriptions of “what” care was provided, rather than the “how”. These papers offer a rich, experiential account of care for a sample of people living with multimorbidity, and the impact of care coordination on their ability to manage their health conditions. The development of trusting relationships between clients and their health care professionals was the fundamental basis for the care experience and, for many, an improvement in their health and wellbeing.

1) Peart, A., Barton, C., Lewis, V., & Russell, G. (2020): The experience of care coordination for people living with multimorbidity at risk of hospitalisation: an interpretative phenomenological analysis, Psychology & Health, DOI: 10.1080/08870446.2020.1743293.

2) Peart, A., Lewis, V., Barton, C., & Russell, G. (2020). Healthcare professionals providing care coordination to people living with multimorbidity: An interpretative phenomenological analysis. J Clin Nurs. 00:1–12. https://doi.org/10.1111/jocn.15243

Identifying key outcomes for multimorbidity research

By Susan M Smith, Emma Wallace, Chris Salisbury, Maxime Sasseville, Elizabeth Bayliss, Martin Fortin
A new study has identified the most appropriate outcomes to assess in studies examining interventions for patients who suffer from multiple chronic medical conditions (multimorbidity). It has been conducted by researchers from RCSI (Royal College of Surgeons in Ireland). The study was carried out by the Health Research Board (HRB) Centre for Primary Care Research at RCSI’s Department of General Practice in collaboration with researchers from the University of Bristol, in the United Kingdom, the University of Sherbrooke in Canada and the University of Colorado din the USA . The study was published in the leading US primary care journal, the Annals of Family Medicine [1].
Multimorbidity is present in a patient when the individual has two or more chronic medical conditions. These patients are more likely to experience decreased quality of life, functional decline and increased need for healthcare. They often need to take several medications (polypharmacy) and can experience fragmented care due to involvement with multiple healthcare providers. There is growing interest in trying to identify effective interventions that can improve outcomes for patients with multimorbidity. We conducted a study to identify which outcomes should be prioritised in these studies. We used a Delphi consensus process involving 26 researchers, clinicians and patients from 13 countries.
This panel of international experts agreed that clinical trials of multimorbidity should measure and report, at minimum, quality of life, mortality, and mental health outcomes. The panel reached consensus on 17 core outcomes for multimorbidity research in total. The highest ranked outcomes were health-related quality of life, mental health outcomes and mortality. Other outcomes were grouped into overarching themes of patient-reported impacts and behaviors (treatment burden, self-rated health, self-management behavior, self-efficacy, adherence); physical activity and function (activities of daily living, physical function, physical activity); outcomes related to the medical visit (communication, shared decision-making, prioritization); and health systems outcomes (healthcare utilization, costs, quality of healthcare). The authors suggest that, when designing studies to capture important domains in multimorbidity, researchers consider the full range of outcomes based on study aims and interventions.
1. Smith SM, Wallace E, Salisbury C, et al. A Core Outcome Set for Multimorbidity Research (COSmm). Ann Fam Med 2018;16(2):132-38.

A general practice street health service

By Tom Brett
This qualitative study [1] explores patient and allied health staff perspectives of a street-based, primary health service with the aim of identifying factors that influence patient access and management.
It is a useful companion paper to our recent 10-year retrospective cohort study [2] of multimorbidity among marginalised patients attending the Freo Street Doctor service.
Key themes emerging from the research included better doctor-patient empathy, better understanding of patient circumstances, fostering of social capital and facilitating referral pathways to health and social services.
The researchers noted that the provision of services for homeless and marginalised patients can be challenging for mainstream general practices.
Our findings show that patients attending the Freo Street Doctor service appreciate the open access nature of the clinic, the focus on psycho-social as well as medical needs and the empathy and understanding shown by the GPs, nurses and outreach services who deliver the service. The preparedness of the street health service providers to meet the altered needs of marginalised patients in their own backyard is a key factor in engagement.
Mainstream primary health care services would do well to recognise and adopt strategies that recognise the special needs and social circumstances of these patients.
1.       Strange C,   Fisher C, Chan She Ping-Delfos W, Arnold-Reed D, Brett T.  A general practice street health service – patient and allied service provider perspectives. AJGP. 2018. 47 (1-2): 44-48.
2.       Arnold-Reed D, Troeung L, Brett T,  Chan She Ping-Delfos W, Geelhoed E, Fisher C, Preen D. Increasing multimorbidity in an Australian street health service – a 10-year retrospective cohort study,. AJGP. 2018; 47 (4): 181-189.

What to give to the patient who has everything? A qualitative study of prescribing in multimorbidity

By Carol Sinnott

Using clinical guidelines in the management of patients with multimorbidity can lead to the prescription of multiple and sometimes conflicting medications. Our research group has just published a qualitative study exploring how GPs make decisions when prescribing for complicated multimorbid patients, with a view to informing intervention design in this field [1].
In qualitative interviews with GPs, we used case-specific information to reveal how GPs make compromises between patient centred and evidence based care in multimorbidity.
In the management of these cases, GPs integrated information from multiple sources including the patient, specialists and evidence based medicine. Difficulties arose if the recommendations or preferences conflicted with each other. GPs responded to this scenario by ‘satisficing’: accepting care that they deemed satisfactory and sufficient for a particular patient. In multimorbid patients perceived as stable, GPs’ preferred to ‘maintain the status quo’ rather than rationalize medications. This approach was due to GPs’ perceptions of the potential negative repercussions associated with changing medications. Proactive changes in medications were facilitated by continuity of care, sufficient consultation time and open lines of communication with the patient, other healthcare professionals and other GPs.
These new understandings will help to inform the design of behavioural interventions to assist medication management and patient centred care in multimorbidity.

The complete article can be accessed at: http://bjgp.org/content/65/632/e184

1: Sinnott C, Hugh SM, Boyce MB, Bradley CP. What to give the patient who has everything? A qualitative study of prescribing for multimorbidity in primary care. Br J Gen Pract. 2015 Mar;65(632):e184-91. doi: 10.3399/bjgp15X684001. PubMed PMID: 25733440.

How can eHealth technology address challenges related to multimorbidity?

By Donna Zulman

Patients with multiple chronic conditions (MCCs) face substantial self-management challenges related to having multiple health issues. For example, patients with MCCs frequently face unwieldy medication regimens and daily self-care routines that may reduce adherence to recommended treatment plans. They also often need to track and coordinate health information from different health care providers and monitor and distinguish between symptoms from different diseases. As a result, there is a great need for effective tools to support the self-care activities associated with multimorbidity. Patient-facing “eHealth” technology may provide opportunities to address these patients’ needs.

We conducted a qualitative study [1] (published in the Journal of General Internal Medicine) with patients with MCCs to explore their self-management and health care navigation challenges, and to identify opportunities to support these patients through new and enhanced eHealth technology. Three themes emerged to guide eHealth technology development: (1) Patients with MCCs manage a high volume of information, visits, and self-care tasks; (2) they need to coordinate, synthesize, and reconcile health information from multiple providers and about different conditions; and (3) their unique position at the hub of multiple health issues requires self-advocacy and expertise. Focus groups identified desirable eHealth resources and tools that reflect these themes.

The abstract of the article can be found at http://www.ncbi.nlm.nih.gov/pubmed/25691239

1) Zulman DM, Jenchura EC, Cohen DM, Lewis ET, Houston TK, Asch SM. How can eHealth technology address challenges related to multimorbidity? Perspectives from patients with multiple chronic conditions. J Gen Intern Med. 2015 [Epub ahead of print]).

Challenges of self-management when living with multiple chronic conditions

By Clare Liddy

In our systematic review of the qualitative literature examining the patient’s perspectives of living with multiple chronic conditions published in Canadian Family Physician [1], we found that patients were able to clearly identify challenges associated with self-management and develop strategies to address these factors. The barriers to self-management are many and yet common between people with many different diseases. However, while most studies were disease-specific, we found that discussion among patients that related to specific medical conditions and disease-specific symptoms was strikingly absent. People did not complain about lack of skill to manage medical tasks such as injecting insulin or blood pressure monitoring; rather, they reported difficulties in dealing with physical and emotional symptoms, with depression, pain and fatigue being prominent. In addition, issues related to knowledge about self-management of conditions commonly arose because of confusing and often contradictory information provided by multiple health care providers. The use of cognitive strategies including reframing, prioritizing, and changing beliefs was reported to improve people’s ability to self-manage their multiple chronic conditions.
This study provides a unique view into the patients’ perspectives of living with multiple chronic conditions which are clearly linked to common functional challenges as opposed to specific diseases. Future policy and programming in self-management support should be better aligned with the patient’s perspectives of living with multiple chronic conditions and this may be achieved by ensuring a more patient-centered approach is adopted by providers and health service organizations.

1. Liddy, C., Blazkho, V. & Mill, K. (2014). “Challenges of self-management when living with multiple chronic conditions. Systematic review of the qualitative literature.” Canadian Family Physician, 60, 1123-1133.

The experience of adults with multimorbidity: a qualitative study

By Cynthia Duguay

Some studies indicate that the many challenges associated with multiple chronic diseases represent more than just the sum of each individual’s diseases. People with multimorbidity perceive their state of health as a series of medical and emotional crises that inevitably lead to physical loss and limitations, and can also create difficult social relationships. The literature does not provide sufficient evidence for us to determine whether the experiences of adults with multimorbidity are similar to those of the older population, despite multimorbidity also being common in younger adults whose social and family situations differ from those of their elders.
We conducted a qualitative study to have a deeper understanding of patients’ experiences from their own perspective (1). The purpose of this phenomenological study was to describe the fundamental structure of adults’ experience with multimorbidity.
The results of the study showed that at the core of the multimorbidity experience are the impression of aging prematurely, difficulties with self-care management, and issues with access to the healthcare system, which contribute to the problem’s complexity. Despite these issues, participants with multimorbidity report attempting to take control of their situation and adjusting to daily living. The whole article about this study is available at the website of the Journal of Comorbidity.

(1) Cynthia Duguay, Frances Gallagher, Martin Fortin. The unique experience of adults with multimorbidity: a qualitative study. Journal of Comorbidity 2014;4(1):11–21.

The care delivery experience of hospitalized patients with complex chronic disease

By Kerry Kuluski

What is important to individuals with complex chronic conditions when receiving care in a hospital setting? We recently published a paper in the journal Health Expectations [1] on the care delivery experiences of 116 inpatients at a complex continuing care/rehabilitation hospital in Toronto, Canada. Patients had an average of 5 morbidities and several illness symptoms including activity of daily living impairments, physical pain and depressive symptoms. Patients reported what kind of care they wanted delivered as well as how they wanted their care delivered. The findings speak to the importance of having a comprehensive assessment with less redundancy, support for transitions into and out of the hospital as well as greater attention to mental health during the hospital stay. On the staffing side, quicker response times, ongoing patient–provider communication and consistency between providers and across care units were highlighted. The patients noted the importance of feeling like a person, not a “knee replacement,” shedding light on the relational aspect of every care transaction. The study has generated a body of evidence on the important components of care delivery from the perspectives of a diverse group of chronically ill individuals who have spent a considerable amount of time in the health-care system. Moving forward, exploration around the appropriate funding models, skill mix and in-hospital processes (e.g., admission and discharge) are needed to move the evidence into changed practice. The findings can serve as a framework for designing patient centered hospital care for complex patient populations.

[1] Kuluski K, Hoang SN, Schaink AK, et al. The care delivery experience of hospitalized patients with complex chronic disease. Health Expectations. May 27 2013.

A qualitative descriptive study on the alignment of care goals between older persons with multi-morbidities, their family physicians and informal caregivers

By Kerry Kuluski

  Do patients, their family physicians and informal caregivers agree on care goals? In short, rarely. We conducted interviews with 28 older persons with multi-morbidities, their informal caregivers and family physicians to assess and compare patient care goals. Maintaining functional independence was a common goal across all groups when looking at the data at the aggregate level. When comparing findings across patient-caregiver-family physician triads a different picture emerged. Very little alignment was found, particularly when patients were medically unstable and during transition points (e.g., when the patient required care in an alternate setting). While divergence in care goals may reflect the different roles and responsibilities of each of the players involved, these perspectives should be illuminated when building care plans to ensure that trade-offs are explored, the needs of the patient are supported and that quality of care is enhanced. This highly accessed paper was recently published in BMC Family Practice.