Understanding patient experiences

Qualitative meta-analysis: seeing the social in the everyday

Fiona Webster, PhdUnderstanding patient experiences

DesignDeveloped standardized approach across individual projectsFlexible, adaptable, followed best practicesPart of emerging fieldAllows us to look beyond level of individual patient satisfaction2ThemesSix high-level topics were originally selected for the focus of the meta-analysis as they were identified across all projects:previous challenges (rationale)benefits of the intervention challenges with the interventionsocial contextsystem issues and Provider experiences FindingsA total of 83 interviews were included in this meta- analysis: 44 patients, 18 caregivers and 21 team members including family physicians Presentation today will focus on the patient experiences.

Patients dont like going to the ED for carePeople do not want to go to the ED, but often believe they have nowhere else to go.They do not have a positive experience of the care they receive.Nevertheless they describe initiating multiple visits.

5I came to Emerg here and the doctor said to me which I thought was very odd Why did you come today as opposed to yesterday or waiting til tomorrow? Its like, Why, do you think Im not sick enough? I cant breathe, I feel like I cant breathe so I came here for helpAnd I thought, Well, what am I doing here? I guess Im just wasting their time. I just wasted some of my taxpaying dollars by coming here, right? I felt like I couldnt breathe so I came in, right?.(Project #1)

6Patients and Caregivers are part of complex family systemsLiterature often assumes presence of a functional family with skill and resources to be helpful.

When youre bombarded with doing everything like feeding, washing, cleaning, bed, supervising, picking up materials and everything, it causes a lot of stress and conflict between family members who are supposed to be divvying up the responsibility I mean the care giving is done resentfully, the person receiving it is always like a burden. (Project #3 Caregiver)

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Non-medical issues mediate patients experiences of health and health care delivery

Non-medical issues such as social isolation, job insecurity and housing were consistently described by patients as mediating their experiences of health and health care delivery.Lived experiences of the medical and the social are seamlessly intertwined In addition to professional silos and disease silos we often artificially separate medical and social issues

Clinicians are aware of thisSome of them had language barriers, some of them were living on their own and they didnt have a lot of supports, they didnt know how to navigate the health care system, they didnt like letting [care providers] into their homes so they had issues with that. Lots of things. (Project #4 team member)

9Mental health as a co-morbidity across all health issues

I dont know how many other people [find this], but the mental health aspect of it [is] kind of depressing when you think this is going to be the rest of your life. (Patient, Project #1)

Systems issuesPatients, caregivers and health care providers default to system issues in their descriptions, particularly of frustrations they are experiencing with care coordination and delivery. The term itself is used to describe different phenomena (i.e. care coordination or access).Because of the wide variation in meaning, use of the term may create a false sense of common understanding while masking effective solutions. Patient experience of medical complexityWell in my case it [the 800 number] has kept me out of Emergency. I mean, I can think of at least two occasions when, if it wasnt here, I probably would have gone to Emerg

However, this same patient goes on to recount how they develped another health problem which necessitated a trip to the ED

12Benefits of interventionsMost patients described receiving a benefit from the care models. These benefits were not necessarily the specific objective of the intervention, but were rather an unintended positive consequence. Patients consistently described feeling cared for as an important benefit of the intervention and this held true across the various disease groups.

CareFor me it was comforting. I thought at last Im gonna get some help. Thats exactly what it meant to me. I was very grateful. I couldnt get out, you know, could do very very little, didnt know what was going on, there was no explanation offered [as to] why I couldnt move. So yeah I was very, very happy. (Project #3 patient)

Man, its just nice knowing theres somebody out there, it sort of gives a person a little bit of comfort knowing, its sort of living having one of those security blankets you know.(Project # 2 patient)

DiagnosisMany cited the opportunity to receive a diagnosis as a clear benefit to the intervention.

I spent a month with the, with the wrong diagnosis, being told that basically that I was crazy. I did end up going to a different hospital and I was diagnosed correctly. The hardest time in my life was in the month of not being diagnosed because I had no supports, I was alone and I couldnt walk, I couldnt get downstairs, I was virtually a prisoner on the second floor in my room and I had very little, very little to eat and [Oh no] it was terrible. (Project #2 patient)

15Patient experiences of integrationThis is a little bit funny its not really funny the social worker came within thirty seconds of her walking in the door I spent the next hour crying and talking non-stop so it was actually very helpful So she was to come back that Wednesday but my mom passed away on Tuesday.. so I phoned the office to say Im really sorry I cant make the appointment and the central office phoned me back to say Well, now your services are terminated because they were attached to my mom, right, they werent for me, they were attached to my mom and now shes dead, so Im sorry we have to cut you off. (Caregiver, Project #3)

SummaryWe were able to identify common issues across the different projects and diverse patient populations

These relate to insights about care coordination, patient complexity and integration

But also assumptions we often make about patients, about family systems, about the importance of such basics as diagnosis and caring

Implications beyond patient satisfactionThe questions we are asking about how to reduce utilization may not be the right question or perhaps not the only question.

Simply having access to care providers does not ensure better experience (and not necessarily better outcomes). This is largely because peoples issues and concerns are not simply medical.

Length of time people are going without a diagnosis or a clear diagnosis is an issue. This is actually a complex medical problem, not just an access problem

Implications qualitative measurementFuture meta-analyses could be designed from the outset with key objectives identified for measurementIncreasingly original qualitative data sets are being re-framed through a process of collaborative analysisImplications qualitative measurementOur design was informed not just by a set of procedures but also a level of theory/interpretation that allowed us to move beyond simple descriptionsOngoing evaluation issues how do we meaningfully integrate findings from different groups (patient, caregivers, providers) and also analyze across local and provincial contexts (i.e. what is a system issue?).20Implications patient careWhether or not we reach a pre-set target, such as reducing ED visits, we do know that we have improved the experience of care in some way for most patients as they struggle with the complexities of social isolation, poverty, disease and mental illness as well as complex medical problems.

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