Cuarta sesión del Seminario Miércoles de Metodología / Quartas com Qualitativa

Main ideas and concepts

• The session is part of a “Wednesday Methodology” qualitative seminar (4th session focused on qualitative research).
• The event is positioned as a pre-activity connected to the upcoming Ibero-American Congress on Qualitative Research in Health (Oct 2027, Guadalajara, Mexico), and as a bridge between congresses through collaboration (especially the Ibero-American Network of Qualitative Research in Health).
• The academic focus is on chronic illnesses and, in particular, how qualitative research can capture:
  • Experiences and meanings over time
  • Relationships and care networks
  • Care practices and the material/institutional conditions surrounding them
• Two complementary presentations are offered:
  1. A framework for studying chronicity (“Following chronicity”)
  2. Methodological reflections on fieldwork under uncertainty, using a “chiaroscuro” metaphor and dialogic methodology principles

Structure of content (what each presentation contributes)

1) Alejandra Fuentes García — “Following chronicity”

Core lesson: To understand chronic illness qualitatively, researchers should shift from studying diagnosis alone to studying trajectories over time, including experiences, networks, practices, and material/institutional supports.

Guiding methodological question

• What steps should we take to understand how living with a chronic illness is experienced, managed, and cared for over time?

Key themes (“three main themes”)

• Trajectories
• Networks
• Social and healthcare practices

How chronicity is framed (not just duration)

Chronicity is treated as a condition involving:

• Temporality (multiple temporalities and changing time structures)
• Situated suffering and lived experience—not only diagnosis

Five dimensions proposed as starting points

• Experience
• Temporality
• Practices
• Networks
• Materialities

Use of medical anthropology’s multi-level distinction

Chronic illness should be understood across:

• Disease (biomedical/pathology)
• Illness (lived experience/suffering)
• Sign (social condition: stigma, roles, norms, institutional mechanisms such as sick leave, etc.)

Emphasis: chronicity’s qualitative object shifts toward situated experience + networks.

Four dimensions of how chronic illnesses interact

• Experiential: how it is lived and interpreted
• Relational: family/caregivers/friends; health system; intersectoral public health view
• Biographical/temporal integration: life transformation over time; identity
• Material/institutional: resources, technologies, care work; how services are sustained

“Shift 1”: from diagnosis to trajectory

• Chronicity is not event chronology; it is an evolving articulation of elements.
• Trajectory enables articulation of different temporalities, including milestones such as:
  • diagnosis, treatment, crises, adjustments, follow-up
• Survival is also increasingly relevant across chronic disease trajectories.
• Work is central throughout the trajectory:
  • illness-related work
  • care work
  • biographical/identity work (continuity, reconstruction, adaptation after disruption)

Empirical example used to illustrate trajectory reconstruction

• Research funded by FONIS (national research fund).
• Reconstruction of therapeutic itineraries from interviews with people over 75:
  • some survived COVID
  • others had died (interviewing main caregivers)

Key methodological claim from this example:

• The health system tends to organize around episodes/events.
• People experience more trajectories, which researchers must reconstruct by connecting episodes into lived temporalities.

“Shift 2”: studying experience through practices + networks

• Chronicity is not only narrated; it is also done through practices.
• Researchers should study:
  • how sustaining life and care unfold over time
  • how practices transform and interact with lived meanings

Network approach (care as a constructed network)

• Older people are not studied as isolated cases; they are treated as nodes within a network of:
  • family/caregivers
  • community/territory
  • institutions/services
• Both formal and informal actors matter, including:
  • coordinated family roles
  • neighbors/local businesses (especially during COVID)
  • primary care centers (e.g., CESFAM)
  • hospitals during critical moments
• Methodological implication: don’t privilege institutional voices by default; researchers must listen to multiple positions, including tensions.

Materialities and continuity of care (especially for cancer)

Qualitative research suggests that continuity in cancer care is ensured not only by teams, but also by invisible coordination work by informal networks.

Practices identified include:

• coordinating, accompanying, and adapting home conditions
• emotional support (transversal across stages)
• compensating for health system gaps (information management, navigating fragmented systems, covering out-of-pocket costs, etc.)
• managing clinical care informally when formal support is insufficient

Practices are organized across health, social, and psychosocial dimensions, with different emphases depending on disease stage (e.g., active treatment vs palliative/survival contexts).

Dialogic methodology (conceptual clarification)

“Dialogic” is more than giving participants voice:

• Knowledge about chronicity is distributed
• Actors occupy non-interchangeable positions and sometimes have competing intentions

Research requires dialogue across:

• sick person, caregiver, professionals, and researchers
• including how systems generate different epistemic positions

Methodological tools described

An ethnographic-informed approach including:

• interviews, observations
• documents
• shadowing logs
• tracking lived time vs institutional time

Consequences for research design:

• Longitudinal/prospective methods are difficult/expensive.
• Therefore, researchers rely on temporal reconstruction and tracking methods.
• Network study requires a multi-stakeholder perspective and attention to both narratives and “doing” practices.

Wrap-up message

Studying chronicity requires shifts:

• from diagnosis → trajectory
• from experience-only → experience + practices + networks
• from health-system benefits alone → social and healthcare continuity through care ecosystems
• from one voice → dialogue between multiple knowledges/positions and temporalities

It emphasizes learning by “following the plot” of care:

• who cares, with what resources/conditions, and what meanings/consequences follow

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2) Blanca Díaz Medina — Methodological reflections using “chiaroscuro”

Core lesson: Fieldwork in chronic illness research is dynamic and uncertain. Researchers must treat the field as relational and evolving, making tensions visible rather than pretending the process is linear or fully controllable.

Connection to dialogic methodology

Researchers should ask whether their study truly uses a dialogical approach:

• In-depth interviews/narratives alone may not be enough.
• Dialogic research requires recognizing that:
  • knowledge is transformed in the encounter with others and context
  • the participant is not just a “source,” but an interlocutor
  • the field is not just a “scenario,” but a field of relationships
  • method is not only a technique, but a situated, contextual process

Empirical focus of her work

Studies focus mainly on people with chronic kidney disease, exploring:

• suffering experiences
• uncertainty linked to bodily changes
• identity and resources
• future concerns
• obstacles in accessing care (economic barriers, lack of service access)
• communication problems with health professionals
• pursuit of “normality” and adaptation/resignification
• treatment trajectories (peritoneal dialysis, hemodialysis, transplant search)

Why a “static/unilateral predefined methodology” fails

• If suffering is dynamic, uncertain, and relational, methodology must be flexible and responsive.
• This motivates the “chiaroscuro” metaphor.

“Chiaroscuro” as a metaphor

• Inspired by Rembrandt painting: light and shadow create depth.
• For fieldwork:
  • articles/books rarely show the full range of highs and lows
  • progress often alternates with moments where access, interview success, or questions stop working

Three concrete “light/shadow” examples

• (a) The moving field

  • Chronic illness trajectories force continuous adaptation:
    • treatment changes (peritoneal dialysis ↔ hemodialysis → transplant search)
    • intermittent hospitalization
    • scheduled interviews disrupted by crises/death
  • Methodological implication:
    • research questions may need revision because the field “appears and disappears” as participants’ circumstances change.

• (b) The expanded field (hybrid/virtuality)

  • Fieldwork increasingly shifts toward virtual spaces:
    • before COVID: use of social networks (e.g., Facebook/WhatsApp) for contact and later as spaces of experience-building
    • Facebook groups where participants share concerns, doubts, what works/doesn’t
    • during/after COVID: virtual interaction becomes more visible and common
  • Methodological implication:
    • boundaries of “the field” shift—interactions can continue after formal sessions end (e.g., participants writing after interviews).

• (c) Positioning, emotion management, and ethics

  • The researcher’s identity shapes interaction and what participants disclose:
    • being a psychologist/teacher/health professional may increase willingness to share emotions
    • but can also create expectations of guidance/support
  • Ethical dilemmas include:
    • what to do with emotionally loaded information
    • how to position oneself in the field
  • Reflexivity:
    • not suppressing emotions, but using them to build knowledge and support ethical decisions

Concluding methodological claim

“Chiaroscuro effects” highlight:

• simultaneous access and loss of contact
• continuously changing field access
• hybrid/in-person + virtual research scenarios
• multiple researcher positions and situated ethics

The aim is not to replace reflexivity, but to strengthen it by:

• making tensions visible
• enabling situated decisions
• asking responsibility-oriented questions (e.g., what is changing in the field; what does it imply for research; what is the person doing at this moment I meet them?)

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Q&A themes (shared by both speakers)

How qualitative chronic illness studies impact institutional context

• Institutional timelines differ from field timelines.
• Strategies may include:
  • long-term “umbrella projects”
  • plus specific projects aligned with institutional production requirements
• Integration into health-system realities can be strengthened by:
  • involving researchers working within/alongside the formal health system
  • collaborating with professionals across care levels (primary care and specialized oncology, etc.)
• Barriers remain (funding and institutional preference often favor quantitative/biomedical work), but qualitative research is gaining openness and evaluative capacity.

What qualitative research reveals that quantitative metrics don’t

Qualitative research better captures:

• the meaning of symptoms in relational/experiential terms
• how pain/symptoms are lived rather than merely measured

It can also reveal what monitoring may miss:

• practices that sustain continuity outside formal system indicators
• impacts on families and care work
• “what happens behind the numbers” and how people navigate system fragmentation

How to incorporate rich interaction data beyond project scenarios (and ethics)

• Qualitative designs are increasingly seen as legitimate, making committees more flexible.
• A key methodological requirement:
  • maintain reflective descriptive analytical field notes/journals
  • integrate them into analysis (not only store them in notebooks)
• Outreach and dissemination are also implied as important responsibilities.

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Speakers / sources featured

Moderators / organizers

• Ángel Escobar Rubias — moderator; research professor at University of Guadalajara, CUT
• María Guadalupe Ramírez Contreras — president of organizing committee for the 12th SIX; welcomes participants
• “Dr. Lupita” — concludes the session; helps close/announce future sessions

Presenters

• Alejandra Fuentes García — University of Chile; talk: “Following chronicity”
• Blanca Díaz Medina — research professor; talk on methodological reflections using “chiaroscuro”

Referenced authors / conceptual sources mentioned in subtitles

• Medical anthropology (distinctions among disease/illness/sign)
• Parsons (role of the sick person; sick roles/mechanisms)
• Charmaz (different times: illness, biography, organization of care)
• Strauss / Corbin-Strauss (encounter, continuity, adaptation, reconstruction; referenced as “Corber Straus” in subtitles)
• Berry (biographical disruption referenced in subtitles)