Abed N, Knezevic B, Sousa P, Tella S, Srulovici E, Strametz R, Mira JJ (2025) Defining informal caregivers by their characteristics safety roles and training needs in Europe. Sci Rep 15(1):24375. https://doi.org/10.1038/s41598-025-08540-y

Article  CAS  PubMed  PubMed Central  Google Scholar 

Cattaneo A, Vitali A, Regazzoni D, Rizzi C (2025) The burden of informal family caregiving in europe, 2000–2050: a microsimulation modelling study. Lancet Reg Health–Europe 53. https://doi.org/10.1016/j.lanepe.2025.101295

Silva JR, Wu R, Scholes-Robertson N, Hughes A, van Zwieten A, Wong G, Sluiter A, Viecelli AK, Craig JC, McDonald S (2025) Reporting the involvement of patients and caregivers in identifying and designing healthcare interventions: the IDEAS framework. J Clin Epidemiol 183:111784. https://doi.org/10.1016/j.jclinepi.2025.111784

Article  Google Scholar 

Biegel DE, Sales E, Schulz R (1991) Family caregiving in chronic illness: Alzheimer’s disease, cancer, heart disease, mental illness, and stroke. Sage Publications, Inc.

Hunt CK (2003) Concepts in caregiver research. J Nurs Scholarsh 35(1):27–32. https://doi.org/10.1111/j.1547-5069.2003.00027.x

Article  PubMed  Google Scholar 

Applebaum AJ, Kent EE, Lichtenthal WG (2021) Documentation of caregivers as a standard of care. J Clin Oncol 39(18):1955. https://doi.org/10.1200/JCO.21.00402

Article  PubMed  PubMed Central  Google Scholar 

Brouwer WB, van Exel NJA, Van De Berg B, Dinant HJ, Koopmanschap MA, van den Bos GA (2004) Burden of caregiving: evidence of objective burden, subjective burden, and quality of life impacts on informal caregivers of patients with rheumatoid arthritis. Arthritis Care Res 51(4):570–577. https://doi.org/10.1002/art.20528

Article  Google Scholar 

Hirst SP, Metcalf BJ (2013) Learning needs of caregivers. J Gerontol Nurs 12(4):24–28. https://doi.org/10.3928/0098-9134-19860401-07

Article  Google Scholar 

van Exel NJ, Brouwer WB, Van den Berg B, Koopmanschap M, van den Bos GA (2004) What really matters: an inquiry into the relative importance of dimensions of informal caregiver burden. Clin Rehabil 18(6):683–693. https://doi.org/10.1191/0269215504cr743oa

Article  PubMed  Google Scholar 

Malki ST, Johansson P, Andersson G, Andréasson F, Mourad G (2025) Caregiver burden, psychological well-being, and support needs among Swedish informal caregivers. BMC Public Health 25(1):867. https://doi.org/10.1186/s12889-025-22074-y

Article  PubMed  PubMed Central  Google Scholar 

Choi JY, Lee SH, Yu S (2024) Exploring factors influencing caregiver burden: A systematic review of family caregivers of older adults with chronic illness in local communities. Healthcare 12(10):1002. https://doi.org/10.3390/healthcare12101002

Article  PubMed  PubMed Central  Google Scholar 

Ferahman D, Bucak ÖF, Arik S, Şahbaz T (2025) The hidden burden of fibromyalgia: exploring work impairment and quality of life in caregivers. Clin Exp Rheumatol. https://doi.org/10.1007/s00296-025-05925-0

Article  PubMed  Google Scholar 

Blackstone EC, Mazanec SR, Daly BJ, Dorth JA, Montero AJ, Aulisio MP, Brandt PT, Foley H, Loue S (2025) Stakeholder perspectives on the role of caregivers in cancer clinical trial decision-making: results of a qualitative study. Support Care Cancer 33(6):1–12. https://doi.org/10.1007/s00520-025-09505-7

Article  Google Scholar 

Bowness B, Henderson C, Akhter Khan SC, Akiba M, Lawrence V (2024) Participatory research with carers: A systematic review and narrative synthesis. Health Expect 27(1):e13940. https://doi.org/10.1111/hex.13940

Article  PubMed  Google Scholar 

Frank L, Jennings LA, Petersen RC, Majid T, Gilmore-Bykovskyi A, Schicker L, Karlawish J (2021) Participation of persons with dementia and their caregivers in research. J Am Geriatr Soc 69(7):1784–1792. https://doi.org/10.1111/jgs.17340

Article  PubMed  PubMed Central  Google Scholar 

Wang Y, Nightingale CL, Braun-Inglis C, Sterba K, Weaver KE, Wood E, Kadambi S, Gada U, Montes A, Magnuson A (2024) Recruitment of informal caregivers into community oncology research studies: results from the 2022 landscape assessment. Oncologist 29(12):e1790–e3. https://doi.org/10.1093/oncolo/oyae247

Article  PubMed  PubMed Central  Google Scholar 

Coskun Benlidayi I, Gokcen N, Sariyildiz A, Sarpel T (2019) They have got the blues: patient’s mood-and disease activity-related psychological burden of rheumatoid arthritis on caregivers. Int J Psychiatry Clin Pract 23(2):84–89. https://doi.org/10.1080/13651501.2018.1492728

Article  CAS  PubMed  Google Scholar 

Jacobi C, van den Berg B, Boshuizen H, Rupp I, Dinant H, Van den Bos G (2003) Dimension-specific burden of caregiving among partners of rheumatoid arthritis patients. Rheumatology 42(10):1226–1233. https://doi.org/10.1093/rheumatology/keg366

Article  CAS  PubMed  Google Scholar 

Mittendorfer-Rutz E, Rahman S, Tanskanen A, Majak M, Mehtälä J, Hoti F, Jedenius E, Enkusson D, Leval A, Sermon J (2018) Burden for parents of patients with Schizophrenia—A nationwide comparative study of parents of offspring with rheumatoid arthritis, multiple sclerosis, epilepsy, and healthy controls. Schizophr Bull 45(4):794–803. https://doi.org/10.1093/schbul/sby130

Article  PubMed Central  Google Scholar 

Silim H, Wamithi S, Riang’a RM, Migowa A (2025) Experiences among parents caring for children with juvenile idiopathic arthritis at a tertiary referral hospital in Kenya. Front Pead 13:1443529. https://doi.org/10.3389/fped.2025.1443529

Article  Google Scholar 

Putri KG, Sampath S, Richardson CL, McCloskey A, Rathbone AP (2025) A qualitative study exploring experiences of treatment in paediatric rheumatology-children’s, young people’s, parents’ and carers’ perspectives. Pediatr Rheumatol 23(1):7. https://doi.org/10.1186/s12969-025-01063-w

Article  Google Scholar 

Smith T, Fletcher J, Lister S (2021) Lived experiences of informal caregivers of people with chronic musculoskeletal pain: a systematic review and meta-ethnography. Br J Pain 15(2):187–198. https://doi.org/10.1177/20494637209251

Article  PubMed  Google Scholar 

Kelly A, Tymms K, de Wit M, Bartlett SJ, Cross M, Dawson T, De Vera M, Evans V, Gill M, Hassett G (2020) Patient and caregiver priorities for medication adherence in gout, osteoporosis, and rheumatoid arthritis: nominal group technique. Arthritis Care Res 72(10):1410–1419. https://doi.org/10.1002/acr.24032

Article  Google Scholar 

Galetti I, Nunzio Sd, Brogelli L, Mirisola V, Garbagnati C (2021) How do systemic sclerosis manifestations influence patients’ lives? Results from a survey on patients and caregivers. Curr Med Res Opin 37(sup2):5–15. https://doi.org/10.1080/03007995.2021.1992371

Article  PubMed  Google Scholar 

Verwoerd A, Armbrust W, Cowan K, van den Berg L, de Boer J, Bookelman S, Britstra M, Cappon J, Certan M, Dedding C (2021) Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis. Pediatr Rheumatol 19:1–10. https://doi.org/10.1186/s12969-021-00540-2

Article  Google Scholar 

Schoemaker CG, Richards DP, De Wit M (2023) Matching researchers’ needs and patients’ contributions: practical tips for meaningful patient engagement from the field of rheumatology. Ann Rheum Dis 82(3):312–315. https://doi.org/10.1136/ard-2022-223561

Article  PubMed  Google Scholar 

Hansen CW, Nørgaard MW, de Thurah A, Midtgaard J, Cromhout PF, Esbensen BA (2024) Significant others in inflammatory arthritis: roles, influences, and challenges—a scoping review. Rheumatol Int 44(10):1849–1859. https://doi.org/10.1007/s00296-024-05639-9

Article  PubMed  PubMed Central  Google Scholar 

Fuller A, Cai K, Diaz-Torne C, Filippou G, Pascart T, Hensey O, Grossberg D, Christensen R, Shea B, Singh JA (2021) Outcome domains reported by patients, caregivers, healthcare professionals and stakeholders for calcium pyrophosphate deposition (CPPD): a content analysis based on semi-structured qualitative interviews from the OMERACT CPPD working group. Seminars in arthritis and rheumatism;: Elsevier; 2021. pp. 650-4

Mallik M (1997) Advocacy in nursing–perceptions of practising nurses. J Clin Nurs 6(4):303–313. https://doi.org/10.1111/j.1365-2702.1997.tb00319.x

Article  CAS  PubMed  Google Scholar 

Vaartio H, Leino-Kilpi H, Salanterä S, Suominen T (2006) Nursing advocacy: how is it defined by patients and nurses, what does it involve and how is it experienced? Scand J Caring Sci 20(3):282–292. https://doi.org/10.1111/j.1471-6712.2006.00406.x

Article  PubMed  Google Scholar 

Agulnik A (2025) Listen to the parents: caregiver concern and development of critical illness. Lancet Child Adolesc Health 9(7):440–441. https://doi.org/10.1016/S2352-4642(25)00141-5

Article  PubMed  Google Scholar 

Negrón JB, Lopez-Olivo MA, Carmona L, Christensen R, Ingegnoli F, Zamora NV, Gamez-Nava JI, Gonzalez-Lopez L, Strand V, Goel N (2022) Patient perspectives on Long-Term outcomes in rheumatoid arthritis. A qualitative study from the OMERACT patient outcomes in longitudinal studies working group. Semin Arthritis Rheum 152028. https://doi.org/10.1016/j.semarthrit.2022.152028

Benavent D, Carmona L, Lopez-Olivo MA, Hill CL, Westrich-Robertson T, Goel N, Strand V, Shea B, Grosskleg S, Leong A (2024) Patient outcomes in longitudinal observational studies (POLOS) of rheumatoid arthritis: determining the OMERACT core domain set. Semin Arthritis Rheum 64:152343. https://doi.org/10.1016/j.semarthrit.2023.152343

Article  PubMed