Developing a conceptual framework for family caregiver preparedness in stroke care: A scoping review
-
Nor Nadiya Ab Ghani
,
Aniawanis Makhtar
,
Sharifah Munirah Syed Elias
,
Norfadzilah Ahmad
,
Norliza Suut
Abstract
Background & Aim: Family caregivers of stroke survivors often assume complex responsibilities with limited preparation, while evidence on how best to support them remains fragmented. This review aimed to map evidence on family caregiver preparedness in stroke care and use the findings to develop a conceptual framework.
Methods & Materials: A scoping review was conducted using the Joanna Briggs Institute methodology and reported according to guidance for scoping reviews. MEDLINE via Ovid, PubMed, Scopus, ProQuest, and ScienceDirect were searched for peer-reviewed English-language studies published from 2014 to 2025. Quantitative, qualitative, and mixed-methods studies examining preparedness, related frameworks, tools, or interventions were included. Studies involving paid caregivers, paediatric stroke, or psychosocial outcomes without reference to preparedness were excluded. Findings were synthesised descriptively and thematically.
Results: Twenty-two studies met the inclusion criteria. Four examined frameworks, assessment tools, or interventions, and 18 reported preparedness levels and associated factors. Preparedness was generally low to moderate. Three contextual domains shaped caregiving demands: stroke survivor clinical characteristics, caregiving roles and responsibilities, and family caregiver characteristics. Psychosocial and emotional factors and social and supportive resources moderated the relationship between demands and preparedness. These domains were integrated into a framework describing preparedness as a changing balance between caregiving demands and available resources across the stroke care continuum.
Conclusion: Family caregiver preparedness is multidimensional and changes over time. The proposed framework may support assessment, follow-up, and intervention design, but requires empirical and stakeholder validation.
1. Jambi LK, Hamad A, Salah H, Sulieman A. Stroke and disability: incidence, risk factors, management, and impact. J Disabil Res. 2024;3(7):20240094.
2. Feigin VL, Brainin M, Norrving B, Martins SO, Pandian J, Lindsay P, et al. World stroke organization: global stroke fact sheet 2025. Int J Stroke. 2025;20(2):132-44.
3. Bakka AG, Patil SS, Rachakonda B, Patil A, Bolleddula J, Nandyala PS, et al. Breaking barriers in stroke therapy: recent advances and ongoing challenges. Cureus. 2025;17(1):e78288.
4. Kingau NW, Rhoda A, Louw QA, Nizeyimana E. The impact of stroke support groups on stroke patients and their caregivers. Rehabil Adv Dev Health Syst. 2024;1(1):a9.
5. Jin Y, Guo X, Cadilhac DA, Qiu Y, Wang S, Zhang Z, et al. Clinical staff's perceptions of transitional care from hospital to home for stroke patients: A qualitative study. BMC Nurs. 2025;24:268.
6. Sidek NN, Kamalakannan S, Tengku Ismail TA, Musa KI, Ibrahim KA, Abdul Aziz Z, et al. Experiences and needs of the caregivers of stroke survivors in Malaysia: a phenomenological exploration. Front Neurol. 2022;13:996620.
7. Chen J, Chen J, Wang Y, Cui Y, Liao L, Yan M, et al. Transition experiences of patients with post-stroke dysphagia and family caregivers: a longitudinal, qualitative study. PLoS One. 2024;19(6):e0304325.
8. Rago C, Virgolesi M, Curcio F, Vellone E, Alvaro R, Veronese M, et al. Insights into the home transition: a qualitative study on stroke survivors' experiential journey. J Vasc Nurs. 2025;43(3):106-13.
9. Dal Pizzol FL, O'Rourke HM, Olson J, Baumbusch J, Hunter K. The meaning of preparedness for informal caregivers of older adults: a concept analysis. J Adv Nurs. 2024;80(6):2308-24.
10. Figura M, Rago C, Veronese M, Curcio F, Virgolesi M, Vellone E, et al. Interconnected challenges in caregiving: a multidimensional analysis of stroke survivors' caregivers during the hospital-to-home transition. Eur J Cardiovasc Nurs. 2025;24(7):1121-31.
11. Chen L, Xiao LD, Chamberlain D. An integrative review: challenges and opportunities for stroke survivors and caregivers in hospital-to-home transition care. J Adv Nurs. 2020;76(9):2253-65.
12. Lin S, Wang C, Wang Q, Xie S, Tu Q, Zhang H, et al. The experience of stroke survivors and caregivers during hospital-to-home transitional care: a qualitative longitudinal study. Int J Nurs Stud. 2022;130:104213.
13. Maggio MG, Corallo F, De Francesco M, De Cola MC, De Luca R, Manuli A, et al. Understanding the family burden and caregiver role in stroke rehabilitation: insights from a retrospective study. Neurol Sci. 2024;45:5347-53.
14. Tiwari S, Joshi A, Rai N, Satpathy P. Impact of stroke on quality of life of stroke survivors and their caregivers: a qualitative study from India. J Neurosci Rural Pract. 2021;12(4):680-8.
15. Steinsheim G, Malmedal W, Follestad T, Olsen B, Saga S. Factors associated with subjective burden among informal caregivers of home-dwelling people with dementia: a cross-sectional study. BMC Geriatr. 2023;23(1):644.
16. Lutz BJ, Young ME, Creasy KR, Martz C, Eisenbrandt L, Brunny JN, et al. Improving stroke caregiver readiness for transition from inpatient rehabilitation to home. Gerontologist. 2017;57(5):880-9.
17. Camicia M, Lutz BJ, Harvath T, Kim KK, Drake C, Joseph JG. Development of an instrument to assess stroke caregivers' readiness for the transition home. Rehabil Nurs. 2020;45(5):287-98.
18. Cameron JI, Naglie G, Gignac MA, Bayley M, Warner G, Green T, et al. Randomized clinical trial of the timing it right stroke family support program: research protocol. BMC Health Serv Res. 2014;14:18.
19. Mohammadi S, Zabolypour S, Ghaffari F, Arazi T. The effect of family-oriented discharge program on the level of preparedness for care-giving and stress experienced by the family of stroke survivors. Iran Rehabil J. 2019;17(2):113-20.
20. Peters MD, Marnie C, Tricco AC, Pollock D, Munn Z, Alexander L, et al. Updated methodological guidance for the conduct of scoping reviews. JBI Evid Synth. 2020;18(10):2119-26.
21. Tricco AC, Lillie E, Zarin W, O'Brien KK, Colquhoun H, Levac D, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169(7):467-73.
22. Roslin H, Muliira JK, Lazarus ER, Jacob D, Al-Habsi W, Al-Musallami F. Caregiving preparedness and caregiver burden in Omani family caregivers for patients with acquired brain injury. Sultan Qaboos Univ Med J. 2023;23(4):493-501.
23. Liu J, Liu Q, Huang Y, Wang W, He G, Zeng Y. Effects of personal characteristics, disease uncertainty and knowledge on family caregivers' preparedness of stroke survivors: a cross-sectional study. Nurs Health Sci. 2020;22(4):892-902.
24. Uhm KE, Jung H, Woo MW, Kwon HE, Oh-Park M, Lee BR, et al. Influence of preparedness on caregiver burden, depression, and quality of life in caregivers of people with disabilities. Front Public Health. 2023;11:1153588.
25. Gutierrez-Baena B, Romero-Grimaldi C. Predictive model for the preparedness level of the family caregiver. Int J Nurs Pract. 2022;28(3):e13057.
26. Pucciarelli G, Lyons KS, Petrizzo A, Ambrosca R, Simeone S, Alvaro R, et al. Protective role of caregiver preparedness on the relationship between depression and quality of life in stroke dyads. Stroke. 2022;53(1):145-53.
27. Turner RL, Reese-Melancon C, Harrington EE, Andreo M. Caregiving during the COVID-19 pandemic: factors associated with feelings of caregiver preparedness. J Appl Gerontol. 2023;42(10):2089-99.
28. Çekici A, Yurttaş A. The relationship between care preparedness and altruism levels in caregivers of stroke patients. J Neurosci Nurs. 2024;56(2):60-4.
29. Fauzia SG, Kurniawan T, Pratiwi SH, Trisyani M, Pahria T. Readiness for hospital discharge among family caregivers of patients with chronic diseases. Indones J Glob Health Res. 2024;6(4):2059-67.
30. Kusumawardani LH, Setiyani R, Iskandar A, Pramono P, Supardi DI. The readiness of discharge planning in aspects of caregiver involvement among caring for the elderly with stroke. Media Keperawatan Indones. 2023;6(1):9-17.
31. Septianingrum Y, Yusuf A, Widyawati IY, Sari RY, Wardani EM, Musfirah NR, et al. Factors associated with family caregiver readiness to care for post-stroke patients after hospital discharge. Discov Soc Sci Health. 2024;4:4.
32. Aydın A, Karabacak BG. Preparedness of caregivers giving care to stroke patients for caregiving and the stress they perceive. Turk J Cerebrovasc Dis. 2024;30(2):104-10.
33. Sari IWW, Nirmalasari N. Preparedness among family caregivers of patients with non-communicable diseases in Indonesia. Nurse Media J Nurs. 2020;10(3):339-49.
34. Ganefianty A, Songwathana P, Damkliang J. Readiness for hospital discharge perceived by caregivers of patients with traumatic brain injury: a cross-sectional study. Belitung Nurs J. 2024;10(2):209-14.
35. Onu DU, Orjiakor CT, Onyedire NG, Amazue LO, Allison TJ. Preparedness for caregiving moderates the association between burden and health-related quality of life among family caregivers of stroke patients in Nigeria. S Afr J Psychol. 2022;52(3):338-50.
36. Petrizzo A, Lyons KS, Bartoli D, Simeone S, Alvaro R, Lee CS, et al. The moderating role of caregiver preparedness on the relationship between depression and stroke-specific quality of life in stroke dyads: a longitudinal study. Eur J Cardiovasc Nurs. 2023;22(1):53-63.
37. Hagedoorn EI, Keers JC, Jaarsma T, van der Schans CP, Luttik MA, Paans W. The association of collaboration between family caregivers and nurses in the hospital and their preparedness for caregiving at home. Geriatr Nurs. 2020;41(4):373-80.
38. Wang H, Zhu L, Cao W, Yang W, Gao Y, Yao G, et al. Family resilience, patient-reported symptoms in young stroke dyads: the effect of caregiver readiness and social support. J Clin Nurs. 2024;33(10):3954-68.
39. Özkan Tuncay F. The relationship between preparedness for caregiving and spiritual well-being in the carers of stroke patients: a case study in Türkiye. J Relig Health. 2024;63(4):2760-76.
40. Wabula LR, Yetti K, Masfuri M, Widyatuti W, Widyawati IY, Septiwi C, et al. Family caregivers' experiences of providing psychospiritual care to patients undergoing hemodialysis in Indonesia: A descriptive phenomenological study. Nurs Pract Today. 2026;13(3):355-66.
2. Feigin VL, Brainin M, Norrving B, Martins SO, Pandian J, Lindsay P, et al. World stroke organization: global stroke fact sheet 2025. Int J Stroke. 2025;20(2):132-44.
3. Bakka AG, Patil SS, Rachakonda B, Patil A, Bolleddula J, Nandyala PS, et al. Breaking barriers in stroke therapy: recent advances and ongoing challenges. Cureus. 2025;17(1):e78288.
4. Kingau NW, Rhoda A, Louw QA, Nizeyimana E. The impact of stroke support groups on stroke patients and their caregivers. Rehabil Adv Dev Health Syst. 2024;1(1):a9.
5. Jin Y, Guo X, Cadilhac DA, Qiu Y, Wang S, Zhang Z, et al. Clinical staff's perceptions of transitional care from hospital to home for stroke patients: A qualitative study. BMC Nurs. 2025;24:268.
6. Sidek NN, Kamalakannan S, Tengku Ismail TA, Musa KI, Ibrahim KA, Abdul Aziz Z, et al. Experiences and needs of the caregivers of stroke survivors in Malaysia: a phenomenological exploration. Front Neurol. 2022;13:996620.
7. Chen J, Chen J, Wang Y, Cui Y, Liao L, Yan M, et al. Transition experiences of patients with post-stroke dysphagia and family caregivers: a longitudinal, qualitative study. PLoS One. 2024;19(6):e0304325.
8. Rago C, Virgolesi M, Curcio F, Vellone E, Alvaro R, Veronese M, et al. Insights into the home transition: a qualitative study on stroke survivors' experiential journey. J Vasc Nurs. 2025;43(3):106-13.
9. Dal Pizzol FL, O'Rourke HM, Olson J, Baumbusch J, Hunter K. The meaning of preparedness for informal caregivers of older adults: a concept analysis. J Adv Nurs. 2024;80(6):2308-24.
10. Figura M, Rago C, Veronese M, Curcio F, Virgolesi M, Vellone E, et al. Interconnected challenges in caregiving: a multidimensional analysis of stroke survivors' caregivers during the hospital-to-home transition. Eur J Cardiovasc Nurs. 2025;24(7):1121-31.
11. Chen L, Xiao LD, Chamberlain D. An integrative review: challenges and opportunities for stroke survivors and caregivers in hospital-to-home transition care. J Adv Nurs. 2020;76(9):2253-65.
12. Lin S, Wang C, Wang Q, Xie S, Tu Q, Zhang H, et al. The experience of stroke survivors and caregivers during hospital-to-home transitional care: a qualitative longitudinal study. Int J Nurs Stud. 2022;130:104213.
13. Maggio MG, Corallo F, De Francesco M, De Cola MC, De Luca R, Manuli A, et al. Understanding the family burden and caregiver role in stroke rehabilitation: insights from a retrospective study. Neurol Sci. 2024;45:5347-53.
14. Tiwari S, Joshi A, Rai N, Satpathy P. Impact of stroke on quality of life of stroke survivors and their caregivers: a qualitative study from India. J Neurosci Rural Pract. 2021;12(4):680-8.
15. Steinsheim G, Malmedal W, Follestad T, Olsen B, Saga S. Factors associated with subjective burden among informal caregivers of home-dwelling people with dementia: a cross-sectional study. BMC Geriatr. 2023;23(1):644.
16. Lutz BJ, Young ME, Creasy KR, Martz C, Eisenbrandt L, Brunny JN, et al. Improving stroke caregiver readiness for transition from inpatient rehabilitation to home. Gerontologist. 2017;57(5):880-9.
17. Camicia M, Lutz BJ, Harvath T, Kim KK, Drake C, Joseph JG. Development of an instrument to assess stroke caregivers' readiness for the transition home. Rehabil Nurs. 2020;45(5):287-98.
18. Cameron JI, Naglie G, Gignac MA, Bayley M, Warner G, Green T, et al. Randomized clinical trial of the timing it right stroke family support program: research protocol. BMC Health Serv Res. 2014;14:18.
19. Mohammadi S, Zabolypour S, Ghaffari F, Arazi T. The effect of family-oriented discharge program on the level of preparedness for care-giving and stress experienced by the family of stroke survivors. Iran Rehabil J. 2019;17(2):113-20.
20. Peters MD, Marnie C, Tricco AC, Pollock D, Munn Z, Alexander L, et al. Updated methodological guidance for the conduct of scoping reviews. JBI Evid Synth. 2020;18(10):2119-26.
21. Tricco AC, Lillie E, Zarin W, O'Brien KK, Colquhoun H, Levac D, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169(7):467-73.
22. Roslin H, Muliira JK, Lazarus ER, Jacob D, Al-Habsi W, Al-Musallami F. Caregiving preparedness and caregiver burden in Omani family caregivers for patients with acquired brain injury. Sultan Qaboos Univ Med J. 2023;23(4):493-501.
23. Liu J, Liu Q, Huang Y, Wang W, He G, Zeng Y. Effects of personal characteristics, disease uncertainty and knowledge on family caregivers' preparedness of stroke survivors: a cross-sectional study. Nurs Health Sci. 2020;22(4):892-902.
24. Uhm KE, Jung H, Woo MW, Kwon HE, Oh-Park M, Lee BR, et al. Influence of preparedness on caregiver burden, depression, and quality of life in caregivers of people with disabilities. Front Public Health. 2023;11:1153588.
25. Gutierrez-Baena B, Romero-Grimaldi C. Predictive model for the preparedness level of the family caregiver. Int J Nurs Pract. 2022;28(3):e13057.
26. Pucciarelli G, Lyons KS, Petrizzo A, Ambrosca R, Simeone S, Alvaro R, et al. Protective role of caregiver preparedness on the relationship between depression and quality of life in stroke dyads. Stroke. 2022;53(1):145-53.
27. Turner RL, Reese-Melancon C, Harrington EE, Andreo M. Caregiving during the COVID-19 pandemic: factors associated with feelings of caregiver preparedness. J Appl Gerontol. 2023;42(10):2089-99.
28. Çekici A, Yurttaş A. The relationship between care preparedness and altruism levels in caregivers of stroke patients. J Neurosci Nurs. 2024;56(2):60-4.
29. Fauzia SG, Kurniawan T, Pratiwi SH, Trisyani M, Pahria T. Readiness for hospital discharge among family caregivers of patients with chronic diseases. Indones J Glob Health Res. 2024;6(4):2059-67.
30. Kusumawardani LH, Setiyani R, Iskandar A, Pramono P, Supardi DI. The readiness of discharge planning in aspects of caregiver involvement among caring for the elderly with stroke. Media Keperawatan Indones. 2023;6(1):9-17.
31. Septianingrum Y, Yusuf A, Widyawati IY, Sari RY, Wardani EM, Musfirah NR, et al. Factors associated with family caregiver readiness to care for post-stroke patients after hospital discharge. Discov Soc Sci Health. 2024;4:4.
32. Aydın A, Karabacak BG. Preparedness of caregivers giving care to stroke patients for caregiving and the stress they perceive. Turk J Cerebrovasc Dis. 2024;30(2):104-10.
33. Sari IWW, Nirmalasari N. Preparedness among family caregivers of patients with non-communicable diseases in Indonesia. Nurse Media J Nurs. 2020;10(3):339-49.
34. Ganefianty A, Songwathana P, Damkliang J. Readiness for hospital discharge perceived by caregivers of patients with traumatic brain injury: a cross-sectional study. Belitung Nurs J. 2024;10(2):209-14.
35. Onu DU, Orjiakor CT, Onyedire NG, Amazue LO, Allison TJ. Preparedness for caregiving moderates the association between burden and health-related quality of life among family caregivers of stroke patients in Nigeria. S Afr J Psychol. 2022;52(3):338-50.
36. Petrizzo A, Lyons KS, Bartoli D, Simeone S, Alvaro R, Lee CS, et al. The moderating role of caregiver preparedness on the relationship between depression and stroke-specific quality of life in stroke dyads: a longitudinal study. Eur J Cardiovasc Nurs. 2023;22(1):53-63.
37. Hagedoorn EI, Keers JC, Jaarsma T, van der Schans CP, Luttik MA, Paans W. The association of collaboration between family caregivers and nurses in the hospital and their preparedness for caregiving at home. Geriatr Nurs. 2020;41(4):373-80.
38. Wang H, Zhu L, Cao W, Yang W, Gao Y, Yao G, et al. Family resilience, patient-reported symptoms in young stroke dyads: the effect of caregiver readiness and social support. J Clin Nurs. 2024;33(10):3954-68.
39. Özkan Tuncay F. The relationship between preparedness for caregiving and spiritual well-being in the carers of stroke patients: a case study in Türkiye. J Relig Health. 2024;63(4):2760-76.
40. Wabula LR, Yetti K, Masfuri M, Widyatuti W, Widyawati IY, Septiwi C, et al. Family caregivers' experiences of providing psychospiritual care to patients undergoing hemodialysis in Indonesia: A descriptive phenomenological study. Nurs Pract Today. 2026;13(3):355-66.
| Issue | Articles in Press | |
| Section | Review Article(s) | |
| Keywords | ||
| stroke; caregivers; patient discharge; rehabilitation; continuity of patient care | ||
| Rights and permissions | |
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This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License. |
How to Cite
1.
Ab Ghani NN, Makhtar A, Syed Elias SM, Ahmad N, Suut N. Developing a conceptual framework for family caregiver preparedness in stroke care: A scoping review. Nurs. pract. today. 2026;:X-X.
