The Hidden Labour of Making Multimorbidity Care Coherent: A Qualitative Study of Patients Navigating Fragmented Internal Medicine Pathways in Indonesia

Tan Liwei; Celvin Angkasa; Dewi Asih

doi:10.61919/2tt3qf53

Authors

Tan Liwei Universitas Prima Indonesia, Indonesia Author
Celvin Angkasa Universitas Prima Indonesia, Indonesia Author
Dewi Asih Universitas Prima Indonesia, Indonesia Author

DOI:

https://doi.org/10.61919/2tt3qf53

Keywords:

multimorbidity; qualitative research; care coordination; treatment burden; continuity of care; internal medicine; Indonesia

Abstract

Background: Multimorbidity is often managed through disease-specific services, requiring patients to coordinate information, appointments, medicines, referrals, and competing clinical priorities across fragmented pathways. This study explored the largely invisible coordination work undertaken by adults with multimorbidity navigating internal medicine care in Indonesia. Methods: A qualitative descriptive design was used with analytic material comprising 14 adult participant profiles representing diverse combinations of chronic conditions. Semi-structured accounts addressed movement between primary and specialist care, appointment management, information transfer, medication changes, conflicting recommendations, and family involvement. Data were analysed using reflexive thematic analysis informed by treatment-burden and cumulative-complexity perspectives. Results: Five interrelated themes were identified: becoming the courier of one's own medical history; appointment choreography and time poverty; reconciling contradictory clinical plans; family members as shadow coordinators; and continuity as a scarce clinical resource. Participants described substantial cognitive, administrative, temporal, and interpretive work required to maintain continuity across services. Medication-related uncertainty and unclear responsibility for reconciling competing recommendations created circumstances with potential safety implications, while family support and relational continuity increased patients' capacity to navigate fragmented care. Conclusion: Fragmented multimorbidity care can transfer substantial coordination work to patients and families. Strengthening informational and relational continuity, clarifying responsibility for cross-condition reconciliation, coordinating transitions, and providing targeted navigation support may reduce avoidable treatment burden and improve patient-centred care

References

1. Husnayain A, Ekadinata N, Sulistiawan D, Su ECY. Multimorbidity patterns of chronic diseases among Indonesians: insights from Indonesian National Health Insurance sample data. Int J Environ Res Public Health. 2020;17(23):8900. doi: 10.3390/ijerph17238900.

2. Pradipta IS, Aprilio K, Ningsih YF, Pratama MAA, Alfian SD, Abdulah R. Treatment nonadherence among multimorbid chronic disease patients: evidence from 3515 subjects in Indonesia. Medicina (Kaunas). 2024;60(4):634. doi: 10.3390/medicina60040634.

3. Rosbach M, Andersen JS. Patient-experienced burden of treatment in patients with multimorbidity: a systematic review of qualitative data. PLoS One. 2017;12(6). doi: 10.1371/journal.pone.0179916.

4. Mair FS, May CR. Thinking about the burden of treatment. BMJ. 2014;349. doi: 10.1136/bmj.g6680.

5. 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):1041-1051. doi: 10.1016/j.jclinepi.2012.05.005.

6. May C, Montori VM, Mair FS. We need minimally disruptive medicine. BMJ. 2009;339. doi: 10.1136/bmj.b2803.

7. Mulyanto J, Wibowo Y, Kringos DS. Exploring general practitioners' perceptions about the primary care gatekeeper role in Indonesia. BMC Fam Pract. 2021;22(1):5. doi: 10.1186/s12875-020-01365-w.

8. Hasyim H, Amayu R, Syakurah RA, Misnaniarti M, Windusari Y, Novrikasari N. A qualitative study of Referral Back Programme implementation in Palembang health centres for chronic disease. J Jaminan Kesehatan Nasional. 2025;5(2):252-267. doi: 10.53756/jjkn.v5i2.388.

9. Stumm J, Thierbach C, Peter L, Schnitzer S, Dini L, Heintze C, et al. Coordination of care for multimorbid patients from the perspective of general practitioners: a qualitative study. BMC Fam Pract. 2019;20:160. doi: 10.1186/s12875-019-1048-y.

10. Sinnott C, Mc Hugh S, Browne J, Bradley C. GPs' perspectives on the management of patients with multimorbidity: systematic review and synthesis of qualitative research. BMJ Open. 2013;3(9). doi: 10.1136/bmjopen-2013-003610.

11. Damarell RA, Morgan DD, Tieman JJ. General practitioner strategies for managing patients with multimorbidity: a systematic review and thematic synthesis of qualitative research. BMC Fam Pract. 2020;21:131. doi: 10.1186/s12875-020-01197-8.

12. Kuipers SJ, Nieboer AP, Cramm JM. Views of patients with multi-morbidity on what is important for patient-centered care in the primary care setting. BMC Fam Pract. 2020;21:71. doi: 10.1186/s12875-020-01144-7.

13. Burch P, Walter A, Stewart S, Bower P. Patient reported measures of continuity of care and health outcomes: a systematic review. BMC Prim Care. 2024;25(1):309. doi: 10.1186/s12875-024-02545-8.

14. Sumner J, Ng CWT, Teo KEL, Peh ALT, Lim YW. Co-designing care for multimorbidity: a systematic review. BMC Med. 2024;22(1):58. doi: 10.1186/s12916-024-03263-9.

15. You C, Zhao J, Fan T, Wang L, Zhang L, Zhao G, et al. Navigating fragmented care: a qualitative study on multimorbidity management challenges in Beijing's tiered healthcare system. BMC Prim Care. 2025;26(1):270. doi: 10.1186/s12875-025-02967-y.

16. Yellapa V, Devadasan N, Krumeich A, Pai NP, Vadnais C, Pai M, Engel N. How patients navigate the diagnostic ecosystem in a fragmented health system: a qualitative study from India. Glob Health Action. 2017;10(1):1350452. doi: 10.1080/16549716.2017.1350452.

17. Samuels EA, Kelley L, Pham T, Cross J, Carmona J, Ellis P, et al. “I wanted to participate in my own care”: evaluation of a patient navigation program. West J Emerg Med. 2021;22(2):417-426. doi: 10.5811/westjem.2020.9.48105.

18. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349-357. doi: 10.1093/intqhc/mzm042.

19. Malterud K, Siersma VD, Guassora AD. Sample size in qualitative interview studies: guided by information power. Qual Health Res. 2016;26(13):1753-1760. doi: 10.1177/1049732315617444.

20. Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qual Res Sport Exerc Health. 2019;11(4):589-597. doi: 10.1080/2159676X.2019.1628806.