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Creating access to cancer care: an exploration of patient-provider encounters in primary care, and sociodemographic factors
Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.ORCID iD: 0000-0003-4212-8080
2021 (English)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Hur skapas tillgång till cancervård? : en studie om patientmöten i primärvården och sociodemografiska faktorer (Swedish)
Abstract [en]

Background: Access to care is widely discussed in both research and practice. However, previous research about access to care has mainly focused on individual behaviors of seeking care, and theories about access have mostly focused on quantifiable dimensions, such as supply and demand. Thus, the possibility that the patient–provider interaction may have importance for patients’ access to further care has not been thoroughly explored. Additionally, time to diagnosis and treatment is an important outcome measure and quality indicator related to access to care.

Aim: The overall aim was to explore how access to cancer care is created through patient–provider encounters in primary care, and whether sociodemographic factors are related to access to care, after the introduction of Standardized Cancer Patient Pathways (CPPs).

Methods: A combination of different methodologies was applied for collecting data, such as participant observations and interviews, as well as data collection from medical records reviews and registers. Initially, primary care encounters between patients seeking care for symptoms that cause suspicion of cancer, that is, alarm symptoms, and their physicians were observed (study I). These physicians and patients were then invited to participate in individual interviews (studies II & III). Lastly, medical records reviews were performed and linked with data from the Swedish Cancer Register on patients diagnosed with colorectal cancer (CRC), and with data from Statistics Sweden and Google Maps (study IV). From a social constructivist perspective, the qualitative data were analyzed using grounded theory method (I & II) and thematic analysis (III). The quantitative data were analyzed descriptively, and analytically using Cox regression (IV).

Results: Access is created through interaction in the patient–provider encounter, and is mirrored through processes of negotiating, embodying roles, and adhering to norms. Patients and physicians create access by negotiating the legitimacy of symptoms through processes characterized by dependency, credibility, and reciprocity (I). Second, physicians create access while being pulled between patients and standardized templates, which illuminates the tension between the responsibility physicians have towards their patients and the healthcare organization. It is therefore challenging for physicians to engage in person/patient-centered dialogues, interpret presented symptoms, and match them with standardized criteria (II). Third, standardization seems to oversimplify the complexity that underlies patients’ interaction with healthcare, downplaying the individual uniqueness of each person’s health problem, situation, and needs. Patients experience a need to act as both sellers and customers when interacting with physicians in primary care and when negotiating symptoms while creating access (III). Lastly, even though sociodemographic factors might have impact on the interaction during encounters, sociodemographic factors, such as income, education, and distance to hospital, do not seem to be related to time to diagnosis and treatment for patients with CRC in the study regions (IV).

Conclusion: Interaction during encounters has importance for patients’ access to care, which illuminates the significance of reconciling the patient and the provider perspectives. Patients perceive demands on themselves when presenting their symptoms and use different strategies in order to legitimize these. This seems particularly challenging if symptoms are diffuse. Physicians have the responsibility to assess these symptoms and match them with criteria for CPP-referrals, criteria which are not always easy to access and apply. Furthermore, access measured as time to diagnosis and treatment among patients diagnosed with CRC in the study regions was not related to differences in sociodemographic factors.

Additionally, this thesis demonstrates the importance for physicians to acknowledge the uniqueness of each patient during encounters, to see, listen, and confirm, while operationalizing their medical expertise in order to identify suspected cancer. Such professional skills seem necessary during patient–provider encounters in primary care. Consequently, this thesis contributes to the existing body of literature by recognizing that interaction inevitably affects access to (cancer) care.

Place, publisher, year, edition, pages
Umeå: Umeå universitet , 2021. , p. 84
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 2158
Keywords [en]
Access to care, patient-provider interaction, primary care, encounters, experiences, cancer, time to diagnosis, standardization, sociodemographic factors
National Category
Nursing Public Health, Global Health and Social Medicine Cancer and Oncology
Identifiers
URN: urn:nbn:se:umu:diva-189160ISBN: 978-91-7855-665-6 (print)ISBN: 978-91-7855-666-3 (electronic)OAI: oai:DiVA.org:umu-189160DiVA, id: diva2:1609032
Public defence
2021-12-03, Aula Biologica, Biologihuset, Linnaeus väg 7, Umeå, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2021-11-12 Created: 2021-11-05 Last updated: 2025-02-20Bibliographically approved
List of papers
1. Negotiating bodily sensations between patients and GPs in the context of standardized cancer patient pathways: an observational study in primary care
Open this publication in new window or tab >>Negotiating bodily sensations between patients and GPs in the context of standardized cancer patient pathways: an observational study in primary care
2020 (English)In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 20, no 1, article id 46Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: How interactions during patient-provider encounters in Swedish primary care construct access to further care is rarely explored. This is especially relevant nowadays since Standardized Cancer Patient Pathways have been implemented as an organizational tool for standardizing the diagnostic process and increase equity in access. Most patients with symptoms indicating serious illness as cancer initially start their diagnostic trajectory in primary care. Furthermore, cancer symptoms are diverse and puts high demands on general practitioners (GPs). Hence, we aim to explore how presentation of bodily sensations were constructed and legitimized in primary care encounters within the context of Standardized Cancer Patient Pathways (CPPs).

METHODS: Participant observations of patient-provider encounters (n = 18, on 18 unique patients and 13 GPs) were carried out at primary healthcare centres in one county in northern Sweden. Participants were consecutively sampled and inclusion criteria were i) patients (≥18 years) seeking care for sensations/symptoms that could indicate cancer, or had worries about cancer, Swedish speaking and with no cognitive disabilities, and ii) GPs who met with these patients during the encounter. A constructivist approach of grounded theory method guided the data collection and was used as a method for analysis, and the COREQ-checklist for qualitative studies (Equator guidelines) were employed.

RESULTS: One conceptual model emerged from the analysis, consisting of one core category Negotiating bodily sensations to legitimize access, and four categories i) Justifying care-seeking, ii) Transmitting credibility, iii) Seeking and giving recognition, and iv) Balancing expectations with needs. We interpret the four categories as social processes that the patient and GP constructed interactively using different strategies to negotiate. Combined, these four processes illuminate how access was legitimized by negotiating bodily sensations.

CONCLUSIONS: Patients and GPs seem to be mutually dependent on each other and both patients' expertise and GPs' medical expertise need to be reconciled during the encounter. The four social processes reported in this study acknowledge the challenging task which both patients and primary healthcare face. Namely, negotiating sensations signaling possible cancer and further identifying and matching them with the best pathway for investigations corresponding as well to patients' needs as to standardized routines as CPPs.

Place, publisher, year, edition, pages
BioMed Central, 2020
Keywords
Access, Cancer, Interaction, Negotiation, Primary healthcare, Standardized care pathways
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-167739 (URN)10.1186/s12913-020-4893-4 (DOI)000519894800001 ()31952534 (PubMedID)2-s2.0-85078011815 (Scopus ID)
Available from: 2020-02-03 Created: 2020-02-03 Last updated: 2024-07-02Bibliographically approved
2. GPs' perspectives of the patient encounter: in the context of standardized cancer patient pathways
Open this publication in new window or tab >>GPs' perspectives of the patient encounter: in the context of standardized cancer patient pathways
2020 (English)In: Scandinavian Journal of Primary Health Care, ISSN 0281-3432, E-ISSN 1502-7724, Vol. 38, no 2, p. 238-247Article in journal (Refereed) Published
Abstract [en]

Objective: We aim to explore how GPs assign meanings and act upon patients’ symptoms in primary care encounters in the context of standardized cancer patient pathways (CPPs).

Design, setting and subjects: Thirteen individual interviews were conducted with GPs, at primary healthcare centers (n = 4) in one county in northern Sweden. Interviews were analyzed using grounded theory method. The results were then linked to symbolic interactionism.

Main outcome measures: GPs’ perspectives about assigning meanings to patients’ presented symptoms and perception about CPPs.

Results: In the encounter, GPs engaged in two simultaneous interactions, one with patients’ symptoms – and the other with CPPs. The core category Disentangling patients’ care trajectory consists of three categories, interpreted as GPs’ strategies developed to assign meaning to symptoms. These strategies are carried out not in a straightforward manner but rather in a conflicting way, illuminating the complexity of GPs’ daily work.

Conclusions: Interacting with patients is vital for assigning meaning to presented symptoms. However, nowadays GPs are not only required to interact with patients, they are also required to interact with CPPs. These standardized routines might create pressure and demands on GPs, especially for those experiencing a lack of information about CPPs. Beside of carrying out the challenging patient/person-centered dialogues and interpreting presented symptoms, GPs also need to link the interpreted symptoms to CPPs. Therefore, it is essential that GPs are given opportunities at their workplaces to continuously be informed and be supported in order to practice CPPs and thereby optimize trajectories for patients undergoing cancer diagnostics.

Place, publisher, year, edition, pages
Taylor & Francis, 2020
Keywords
Encounter, interpretation, symptoms, primary care, cancer patient pathways, general practitioners, symbolic interactionism
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-170053 (URN)10.1080/02813432.2020.1753388 (DOI)000527825600001 ()32314634 (PubMedID)2-s2.0-85083691044 (Scopus ID)
Funder
Västerbotten County Council, RV-855211Västerbotten County Council, RV-731891Visare Norr, 838121The Kempe Foundations
Available from: 2020-04-23 Created: 2020-04-23 Last updated: 2024-07-02Bibliographically approved
3. Shifting between roles of a customer and a seller – patients’ experiences of the encounter with primary care physicians when suspicions of cancer exist
Open this publication in new window or tab >>Shifting between roles of a customer and a seller – patients’ experiences of the encounter with primary care physicians when suspicions of cancer exist
2021 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 16, no 1, article id 2001894Article in journal (Refereed) Published
Abstract [en]

Purpose: Sweden has tried to speed up the process of early cancer detection by standardization of care. This increased focus on early cancer detection provides people with a conflicting norm regarding the importance of recognizing possible cancer symptoms and the responsibility of not delaying seeking care.

Based on existing norms about patients’ responsibility and care seeking, this study explores how patients experience encounters with primary care physicians when they seek care for symptoms potentially indicating cancer.

Methods: Thirteen semi-structured interviews were conducted with patients receiving care for symptoms indicative of cancer in one county in northern Sweden. Data was analysed with thematic analysis.

Results: The common notion of describing patients as customers in a healthcare context does not sufficiently capture all aspects of what counts as being a person seeking care. Instead, people interacting with primary care face a twofold role in where they are required to take the role not only of customer but also of seller. Consequently, people shift between these two roles in order to legitimize their care seeking.

Conclusions: Standardization oversimplifies the complexity underlying patients’ experience of care seeking and interaction with healthcare. Hence, healthcare must acknowledge the individual person within a standardized system.

Place, publisher, year, edition, pages
Taylor & Francis Group, 2021
Keywords
Cancer, symptoms, seeking care, primary healthcare, patients’ experiences, encounters, standardization, CPP
National Category
Nursing Public Health, Global Health and Social Medicine
Research subject
caring sciences in social sciences
Identifiers
urn:nbn:se:umu:diva-189158 (URN)10.1080/17482631.2021.2001894 (DOI)000719585300001 ()34784840 (PubMedID)2-s2.0-85119449712 (Scopus ID)
Funder
Region Västerbotten, RV-855211Cancerforskningsfonden i Norrland, LP–18–2193Visare Norr, 838121The Kempe FoundationsRegion Västerbotten, RV-931881Region Västerbotten, RV-939898Region Västerbotten, RV-731891Visare Norr, 939897Visare Norr, 929986
Note

Originally included in thesis in manuscript form.

Available from: 2021-11-05 Created: 2021-11-05 Last updated: 2025-02-20Bibliographically approved
4. Socioeconomic factors do not influence time to diagnosis for colorectal cancer in northern Sweden
Open this publication in new window or tab >>Socioeconomic factors do not influence time to diagnosis for colorectal cancer in northern Sweden
Show others...
(English)Manuscript (preprint) (Other academic)
National Category
Public Health, Global Health and Social Medicine Cancer and Oncology
Identifiers
urn:nbn:se:umu:diva-189159 (URN)
Note

Originally included in thesis in manuscript form.

Available from: 2021-11-05 Created: 2021-11-05 Last updated: 2025-02-20

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Hultstrand, Cecilia

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