Patient-voice sources¶
Last curated: 2026-08-30
Peer-reviewed sources¶
| Source | Design / sample | Patient-voice contribution | Limitation |
|---|---|---|---|
| Speirs B, et al. PLoS One. 2023;18:e0280059. PMID 36656805 | 15 qualitative carer interviews | Five themes: person/disorder separation, carer health/coping, unpredictability, disillusionment/silencing, story-sharing/support | Small Australian volunteer sample; carer rather than patient voice |
| Cerimele JM, et al. J Acad Consult Liaison Psychiatry. 2024;65:148-156. PMID 37967752 | Mixed methods, 20 adults | Concrete preferences among three symptom-monitoring options; 55% ranked PMQ-9+PHQ-9 first | Options constrained; primary-care/advocacy recruitment |
| Ellison N, et al. J Affect Disord. 2013;151:805-820. PMID 24135506 | Systematic review, 25 articles | Public and internalized stigma synthesis | Literature through 2012; heterogeneous methods |
| Bulteau S, et al. Patient Prefer Adherence. 2018;12:1355-1361. PMID 30100712 | Grounded-theory interviews, 12 euthymic bipolar I participants | Subjective mania and state-dependent treatment disruption | Small retrospective sample |
| Wittkowski A, et al. BMC Psychiatry. 2014;14:281. PMID 25403956 | Metasynthesis, 13 studies / 250 women; 78 mothers | Illness beliefs, consequences and coping; stigma, self-determination and relationships | Combines psychosis and bipolar studies |
| Karidi MV, et al. J Affect Disord. 2015;184:209-215. PMID 26112330 | Scale study, 120 bipolar/schizophrenia participants | Self-stigma, functioning and self-esteem comparison | Small sample; cross-sectional |
| Krogh HB, et al. Int J Bipolar Disord. 2023;11:5. PMID 36735118 | Preliminary qualitative pilot | Sexuality as a neglected care and research domain | Pilot scale; no prevalence inference |
| Glossop Z, et al. Clin Psychol Psychother. 2024;31:e70001. PMID 39441546 | Personal-recovery network analysis | Multidimensional recovery structure | Network edges are not causal |
| Zhou Y, et al. BMC Psychiatry. 2016;16:283. PMID 27515535 | Comparative family-burden study | Family burden in a Chinese hospital context | Acute-hospital setting |
| Williams E, et al. West J Nurs Res. 2022;44:279-287. PMID 34889140 | Caregiver burden and HRV | Treats carer health as an outcome | Association, not causal effect |
| Samalin L, et al. Curr Psychiatry Rep. 2018;20:23. PMID 29589129 | Systematic review of shared decision-making in mood disorders | Evidence base for preference-sensitive decisions | Mood-disorder scope broader than bipolar disorder |
| Miklowitz DJ, et al. JAMA Psychiatry. 2021;78:141-150. PMID 33052390 | Systematic review/component NMA | Psychotherapy components and outcomes | Trial outcomes are not direct lived-experience evidence |
| Rabelo JL, et al. World J Psychiatry. 2021;11:1407-1424. PMID 35070785 | Systematic review | Psychoeducation landscape | Intervention synthesis, not qualitative patient voice |
| Faurholt-Jepsen M. Dan Med J. 2018;65:B5460. PMID 29510813 | Dissertation synthesis | Digital monitoring benefits, absent RCT symptom effect, privacy/legal concerns | Author-centered body of work |
| Saccaro LF, et al. J Affect Disord. 2021;295:323-338. PMID 34488086 | Systematic review, 62 studies | Digital-phenotyping burden, ethics and generalizability context | Heterogeneous small studies |
Public organization sources¶
- Depression and Bipolar Support Alliance — homepage, https://www.dbsalliance.org/, accessed 2026-08-30. Direct fetch HTTP 200.
- International Bipolar Foundation — homepage, https://ibpf.org/, accessed 2026-08-30. HTTP 403 anti-bot interstitial; organization identity/domain resolved, program detail not extracted.
- Bipolar UK — homepage, https://www.bipolaruk.org/, accessed 2026-08-30. Direct fetch HTTP 200.
- Bipolar UK — support groups, https://www.bipolaruk.org/Pages/Category/support-groups, accessed 2026-08-30. Direct fetch HTTP 200.
- Bipolar Scotland — homepage, https://www.bipolarscotland.org.uk/, accessed 2026-08-30. Direct fetch HTTP 200.
- Bipolar Australia — homepage, https://www.bipolaraustralia.org.au/, accessed 2026-08-30. Direct fetch HTTP 200.
- Mood Disorders Society of Canada — homepage, https://mdsc.ca/, accessed 2026-08-30. Direct fetch HTTP 200.
- GAMIAN-Europe — homepage, https://www.gamian.eu/, accessed 2026-08-30. Direct fetch HTTP 200.
- South African Depression and Anxiety Group — homepage, https://www.sadag.org/, accessed 2026-08-30. Direct fetch HTTP 200.
- Bipolar India — homepage, https://www.bipolarindia.com/, accessed 2026-08-30. Direct fetch HTTP 200.
- Japanese Alliance of Bipolar Disorder / Nautilus Association — homepage, https://bipolar-disorder.or.jp/, accessed 2026-08-30. Direct fetch HTTP 200.
- Asociación Colombiana del Trastorno Bipolar — homepage, https://bipolaresco.org/, accessed 2026-08-30. Direct fetch HTTP 200.
- ABRATA — homepage, https://www.abrata.org.br/site2025/, accessed 2026-08-30. Direct fetch HTTP 200.
- FUBIPA — about page, https://fubipa.org.ar/quienes-somos/, accessed 2026-08-30. Direct fetch HTTP 200.
Coverage limits¶
The scholarly sources are disproportionately English-language and high-income-setting studies. Carer and women-focused work is better represented than many other populations. The public organization list is a verified starting set, not a global census. An automated fetch barrier limited detail for IBPF; that site should be inspected interactively before adding program-specific claims.
No private story page, closed group or individual social-media account was accessed. No private individual's name, quotation or identifying detail is stored.