Action Research as a Method to Find Solutions for the Burden of Caregiving at Hospital Discharge

  • Flaminia RealeEmail author
  • Federica Segato
  • Daniela Tartaglini
  • Cristina Masella
Original Paper


The role played by family caregivers in delivering long-term care is crucial: they enhance the quality of care perceived by the patients and support the shift to out-of-hospital care. However, taking care of a relative entails a huge burden that usually begins with the patient’s hospital discharge and may mean that caregivers become patients in need of care as well. Owing to socio-demographic trends, informal caregiving is the most important source of care in community settings; hence targeting the caregivers’ burden properly is crucial. This study explores how action research (AR) can be used to develop new hospital practices to manage the burden borne by family caregivers when patients are discharged from hospital. The 7-month-long action research reported in this paper consisted of three stages (burden identification, burden sharing, and burden management) and it was conducted in a teaching hospital in Rome (Italy). Both quantitative (surveys) and qualitative (focus groups and simulation sessions) techniques were used to engage participants. The AR demonstrates that there is a feasible way in which hospital managers can address proactively the caregivers’ needs in the hospital discharge process, to the advantage of the patients and the entire community.


Family caregiver Caregiver burden Action research Discharge process Hospital management 


Compliance with Ethical Standards

Conflict of Interest

The authors declare that they have no conflict of interest.


  1. Al-Harthy N, Sudersanadas KM, Al-Mutairi M, Vasudevan S, Bin Saleh G, Al-Mutairi M, Hussain LW (2016) Efficacy of patient discharge instructions: a pointer toward caregiver friendly communication methods from pediatric emergency personnel. J Family Community Med 23(3):155–160. CrossRefGoogle Scholar
  2. Alvira MC, Risco E, Cabrera E, Farré M, Rahm Hallberg I, Bleijlevens MH, Meyer G, Koslcenniemi J, Soto ME, Zabalegui A, RightTimePlaceCare Consortium (2015) The association between positive–negative reactions of informal caregivers of people with dementia and health outcomes in eight European countries: a cross-sectional study. J Adv Nurs 71(6):1417–1434. CrossRefGoogle Scholar
  3. Ament BH, Wolfs CA, Kempen GI, Ambergen T, Verhey FR, De Vugt ME (2015) The benefit of a geriatric nurse practitioner in a multidisciplinary diagnostic service for people with cognitive disorders. BMC Res Notes 8:217. CrossRefGoogle Scholar
  4. Avcı K, Çınaroğlu S, Top M (2017) Perceptions of pediatric nurses on ethical decision making processes. Syst Pract Action Res 30:67. CrossRefGoogle Scholar
  5. Bartolo M, De Luca D, Serrao M, Sinforiani E, Zucchella C, Sandrini G (2010) Caregiver burden and needs in community neurorehabilitation. J Rehabil Med 42(9):818–822. CrossRefGoogle Scholar
  6. Bastawrous M (2013) Caregiver burden - a critical discussion. Int J Nurs Stud 50(3):431–441. CrossRefGoogle Scholar
  7. Batiashvili G, Gerzmava O (2013) Administration on aging. Global comparison of formal and informal caregiving. Eur Sci J 9(10).
  8. Bauer M, Fitzgerald L, Haesler E, Manfrin M (2009) Hospital discharge planning for frail older people and their family. Are we delivering best practice? A review of the evidence. J Clin Nurs 18(18):2539–2546. CrossRefGoogle Scholar
  9. Bélanger L, Bourbonnais A, Bernier R, Benoit M (2017) Communication between nurses and family caregivers of hospitalised older persons: a literature review. J Clin Nurs 26(5–6):609–619. CrossRefGoogle Scholar
  10. Boerboom TB, Jaarsma D, Dolmans DH, Scherpbier AJ, Mastenbroek NJ, Van Beukelen P (2011) Peer group reflection helps clinical teachers to critically reflect on their teaching. Med Teach 33(11):615–623. CrossRefGoogle Scholar
  11. Boltz M, Lee KH, Chippendale T, Trotta RL (2018) Pre-admission functional decline in hospitalized persons with dementia: the influence of family caregiver factors. Arch Gerontol Geriatr 74:49–54. CrossRefGoogle Scholar
  12. Bové DG, Zakrisson AB, Midtgaard J, Lomborg K, Overgaard D (2016) Undefined and unpredictable responsibility: a focus group study of the experiences of informal caregiver spouses of patients with severe COPD. J Clin Nurs 25(3–4):483–493. CrossRefGoogle Scholar
  13. Bowen S, McSeveny K, Lockley E, Wolstenholme D, Cobb M, Dearden A (2013) How was it for you? Experiences of participatory design in the UK health service. CoDesign 9(4):230–246. CrossRefGoogle Scholar
  14. Boyd H, McKernon S, Old A (2010) Health service co-design: working with patients to improve healthcare services: guide and toolkit. Waitemata District Health BoardGoogle Scholar
  15. Bradbury-Huang H (2010) What is good action research? Why the resurgent interest? Action Res 8(1):93–109. CrossRefGoogle Scholar
  16. Bremer P, Cabrera E, Leino-Kilpi H, Lethin C, Saks K, Sutcliffe C, Soto M, Zwakhalen SM, Wübker A, RightTimePlaceCare Consortium (2015) Informal dementia care: consequences for caregivers’ health and health care use in 8 European countries. Health Policy 119(11):1459–1471. CrossRefGoogle Scholar
  17. Brimblecombe N, Pickard L, King D, Knapp M (2017) Perceptions of unmet needs for community social care services in England. A comparison of working carers and the people they care for. Health Soc Care Community 25(2):435–446. CrossRefGoogle Scholar
  18. Brimblecombe N, Fernandez JL, Knapp M, Rehill A, Wittenberg R (2018) Review of the international evidence on support for unpaid carers. Journal of Long-Term Care 25–40.
  19. Brunton M, Jordan C, Fouche C (2008) Managing public health care policy: Who's being forgotten? Health Policy 88(2):348–358. CrossRefGoogle Scholar
  20. Caswell G, Pollock K, Harwood R, Porock D (2015) Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study. BMC Palliat Care 14:35. CrossRefGoogle Scholar
  21. Coghlan D, Brannick T (2014) Doing action research in your own organization, 4th edn. Sage, London. Google Scholar
  22. Collatto DC, Dresch A, Lacerda DP, Bentz IG (2018) Is action design research indeed necessary? Analysis and synergies between action research and design science research. Syst Pract Action Res 31:239. CrossRefGoogle Scholar
  23. Corry M, While A, Neenan K, Smith V (2015) A systematic review of systematic reviews on interventions for caregivers of people with chronic conditions. J Adv Nurs 71(4):718–734. CrossRefGoogle Scholar
  24. Courtin E, Jemiai N, Mossialos E (2014) Mapping support policies for informal carers across the European Union. Health Policy 118(1):84–94. CrossRefGoogle Scholar
  25. Cramm JM, Nieboer AP (2016) The changing nature of chronic care and coproduction of care between primary care professionals and patients with COPD and their informal caregivers. Int J Chron Obstruct Pulmon Dis 11:175–182. CrossRefGoogle Scholar
  26. Crawford MJ, Rutter D, Manley C, Weaver T, Bhui K, Fulop N, Tyrer P (2002) Systematic review of involving patients in the planning and development of health care. BMJ 325(7375):1263. CrossRefGoogle Scholar
  27. Dal Pra Ponticelli M (2004) Prendersi cura e lavoro di cura (Taking care and care work). E. Zancan Foundation, PadovaGoogle Scholar
  28. Davison RM, Martinsons MG, Ou CXJ (2012) The roles of theory in canonical action research. MIS Q 36(3):763–778. CrossRefGoogle Scholar
  29. Dieckmann P, Patterson M, Lahlou S, Mesman J, Nyström P, Krage R (2017) Variation and adaptation: learning from success in patient safety-oriented simulation training. Adv Simul 2:21. CrossRefGoogle Scholar
  30. Donetto S, Tsinakas V, Robert G (2014) Using experience-based co-design (EBCD) to improve the quality of healthcare: mapping where we are now and establishing future directions. King’s College, LondonGoogle Scholar
  31. Dujardin C, Farfan-Portet MI, Mitchell R, Popham F, Thomas I, Lorant V (2011) Does country influence the health burden of informal care? An international comparison between Belgium and Great Britain. Soc Sci Med 73(8):1123–1132. CrossRefGoogle Scholar
  32. Exner K, Lindow K, Buchholz C, Stark R (2014) Validation of product-service systems–a prototyping approach. Procedia CIRP 16:68–73. CrossRefGoogle Scholar
  33. Gelo O, Braakman D, Benetka G (2008) Quantitative and qualitative research: beyond the debate. Integr Psychol Behav Sci 42(3):266–290. CrossRefGoogle Scholar
  34. Gervès C, Chauvin P, Bellanger MM (2014) Evaluation of full costs of care for patients with Alzheimer's disease in France: the predominant role of informal care. Health Policy 116(1):114–122. CrossRefGoogle Scholar
  35. Gibson MJ, Kelly K, Kaplan AK (2012) Family caregiving and transitional care: a critical review. Family Caregiver Alliance, San Francisco. Accessed 5 Sep 2016Google Scholar
  36. Giovannetti ER, Reider L, Wolff JL, Frick KD, Boult C, Steinwachs D, Boyd CM (2013) Do older patients and their family caregivers agree about the quality of chronic illness care? Int J Qual Health Care 25(5):515–524. CrossRefGoogle Scholar
  37. Glajchen M (2004) The emerging role and needs of family caregivers in cancer care. J Support Oncol 2(2):145–155Google Scholar
  38. Groen van de Ven L, Smits C, Elwyn G, Span M, Jukema J, Eefsting J, Vernooij-Dassen M (2017) Recognizing decision needs: first step for collaborative deliberation in dementia care networks. Patient Educ Couns 100(7):1329–1337. CrossRefGoogle Scholar
  39. Hagedoorn E, Paans W, Jaarsma T, Keers J, Van Der Schans C, Luttik ML (2017) Aspects of family caregiving as addressed in planned discussions between nurses, patients with chronic diseases and family caregivers: a qualitative content analysis. BMC Nurs 16(37).
  40. Hazzan AA, Ploeg J, Shannon H, Raina P, Oremus M (2015) Caregiver perceptions regarding the measurement of level and quality of care in Alzheimer’s disease. BMC Nurs 14:54. CrossRefGoogle Scholar
  41. Huzzard T, Ahlberg BM, Ekman M (2010) Constructing interorganizational collaboration. Action Res 8(3):293–314. CrossRefGoogle Scholar
  42. Johnson N, Barion A, Rademaker A, Rehkemper G, Weintraub S (2004) The activities of daily living questionnaire: a validation study in patients with dementia. Alzheimer Dis Assoc Disord 18(4):223–230Google Scholar
  43. Kehusmaa S, Autti-Rämö I, Helenius H, Rissanen P (2013) Does informal care reduce public care expenditure on elderly care? Estimates based on Finland’s age study. BMC Health Serv Res 13:317. CrossRefGoogle Scholar
  44. Kemmis S, McTaggart R (2000) Participatory action research: communicative action and the public sphere. In: Denzin NK, Lincoln YS (eds) The sage handbook of qualitative research. Sage, Thousand Oaks, pp 559–603Google Scholar
  45. King D, Pickard L (2013) When is a carer's employment at risk? Longitudinal analysis of unpaid care and employment in midlife in England. Health Soc Care Community 21(3):303–314. CrossRefGoogle Scholar
  46. Kinsella K, He W (2009) An aging world: 2008. International Population Reports, P95/09–1. U.S. Census Bureau, Washington, DCGoogle Scholar
  47. Kramer BJ, Thompson EH (2004) Men as caregivers. Prometheus BooksGoogle Scholar
  48. Landers S, Madigan E, Leff B, Rosati RJ, McCann BA, Hornbake R, MacMillan R, Jones K, Bowles K, Dowding D, Lee T, Moorhead T, Rodriguez S, Breese E (2016) The future of home health care: a strategic framework for optimizing value. Home Health Care Manag Pract 28(4):262–278. CrossRefGoogle Scholar
  49. Lang A (2010) There’s no place like home: research, practice and policy perspectives regarding safety in homecare. Int J Qual Health Care 22(1):75–77. CrossRefGoogle Scholar
  50. Llanque S, Savage L, Rosenburg N, Caserta M (2016) Concept analysis: Alzheimer's caregiver stress. Nurs Forum 51(1):21–31. CrossRefGoogle Scholar
  51. Loewenson R, Laurell AC, Hogstedt C, D’Ambruoso L, Shroff Z (2014) Participatory action research in health systems: a methods reader. TARSC, AHPSR, WHO, IDRC Canada, Equinet, Harare. Accessed 5 Apr 2018Google Scholar
  52. MacFarlane A, Singleton C, Green E (2009) Language barriers in health and social care consultations in the community: a comparative study of responses in Ireland and England. Health Policy 92(2–3):203–210. CrossRefGoogle Scholar
  53. Meyer J (2000) Qualitative research in healthcare. Using qualitative methods in health related action research. BMJ 320(7228):178–181. CrossRefGoogle Scholar
  54. Meyer J (2001) Action research. In: Fulop N et al (eds) Studying the organization and delivery of health services: research methods. Routledge, London, pp 172–187Google Scholar
  55. Miravitlles M, Peña-Longobardo LM, Oliva-Moreno J, Hidalgo-Vega Á (2015) Caregivers’ burden in patients with COPD. Int J Chron Obstruct Pulmon Dis 10:347–356. CrossRefGoogle Scholar
  56. Moroni L, Sguazzin C, Filipponi L, Bruletti G, Callegari S, Galante E, Giorgi I, Majani G, Bertolotti G (2007) Caregiver need assessment: a questionnaire for caregiver demand. G Ital Med Lav Ergon 30(3 Suppl B):B84–B90Google Scholar
  57. Navanandan N, Schmidt SK, Cabrera N, DiStefano MC, Mistry RD (2017) The caregiver perspective on unscheduled 72-hour return visits to pediatric acute care sites: a focus on discharge processes. Acad Pediatr 17(7):755–761. CrossRefGoogle Scholar
  58. Novak M, Guest C (1989) Application of a multidimensional caregiver burden inventory. The Gerontologist 29(6):798–803. CrossRefGoogle Scholar
  59. O’Sullivan G, Hocking C, Spence D (2014) Action research: changing history for people living with dementia in New Zealand. Action Res 12(1):19–35. CrossRefGoogle Scholar
  60. OECD (2017) Health at a glance 2017: OECD indicators. OECD Publishing, ParisGoogle Scholar
  61. Onwuegbuzie AJ, Johnson RB (2004) Validity issues in mixed methods research. American Educational Research Association, annual meeting San Diego, CAGoogle Scholar
  62. Ottmann G, Laragy C, Allen J, Feldman P (2011) Coproduction in practice: participatory action research to develop a model of community aged care. Syst Pract Action Res 24:413. CrossRefGoogle Scholar
  63. Péraire, C, Sedano T (2014) Essence Reflection Meetings: Field Study. EASE '14 Proceedings of the 18th International Conference on Evaluation and Assessment in Software Engineering, Article no. 25.
  64. Perrott BE (2013) Including customers in health service design. Health Mark Q 30(2):114–127. CrossRefGoogle Scholar
  65. Pickard L (2011) The supply of informal care in Europe. ENEPRI Research Report no 94. Accessed 8 Oct 2018
  66. Ranieri V, Madigan K, Roche E, McGuinness D, Bainbridge E, Feeney L (2017) Caregiver burden and distress following the patient's discharge from psychiatric hospital. BJPsych Bull 41(2):87–91. CrossRefGoogle Scholar
  67. Reason P, Bradbury H (2001) Handbook of action research: participative inquiry and practice. Sage Publications, LondonGoogle Scholar
  68. Rodrigues R, Schulmann K, Schmidt A, Kalavrezou N, Matsaganis M (2013) The indirect costs of long-term care. Research note 8/2013, European Commission. Accessed 7 Oct 2018
  69. Roter DL, Narayanan S, Smith K, Bullman R, Rausch P, Wolff JL, Alexander GC (2018) Family caregivers’ facilitation of daily adult prescription medication use. Patient Educ Couns 101(908–916).
  70. Schmeer K (1999) Guidelines for conducting a stakeholder analysis. Partnerships for Health Reform, Abt Associates Inc., BethesdaGoogle Scholar
  71. Sexson K, Lindauer A, Harvath TA (2017) Discharge planning and teaching. Am J Nurs 117(5):S22–S24. CrossRefGoogle Scholar
  72. Söderhamn U, Kjøstvedt HT, Slettebø Å (2015) Evaluation of ethical reflections in community healthcare: a mixed-methods study. Nurs Ethics 22(2):194–204. CrossRefGoogle Scholar
  73. Sonğur C, Özer Ö, Gün Ç, Top M (2018) Patient safety culture, evidence-based practice and performance in nursing. Syst Pract Action Res 31:359. CrossRefGoogle Scholar
  74. Top M, Tekingündüz S (2015) Patient safety culture in a Turkish public hospital: a study of nurses’ perceptions about patient safety. Syst Pract Action Res 28:87. CrossRefGoogle Scholar
  75. Torlak NG, Müceldili B (2014) Soft systems methodology in action: the example of a private hospital. Syst Pract Action Res 27(4):325–361. CrossRefGoogle Scholar
  76. Van Exel J, De Graaf G, Brouwer W (2007) Care for a break? An investigation of informal caregivers’ attitudes toward respite care using Q-methodology. Health Policy 83(2):332–342. CrossRefGoogle Scholar
  77. Van Exel J, De Graaf G, Brouwer W (2008) Give me a break!: informal caregiver attitudes towards respite care. Health Policy 88(1):73–87. CrossRefGoogle Scholar
  78. Varney J, Weiland TJ, Jelinek G (2014) Efficacy of hospital in the home services providing care for patients admitted from emergency departments: an integrative review. Int J Evid Based Healthc 12(2):128–141. CrossRefGoogle Scholar
  79. Watanabe A, Fukuda M, Suzuki M, Kawaguchi T, Habata T, Akutsu T, Kanda T (2015) Factors decreasing caregiver burden to allow patients with cerebrovascular disease to continue in long-term home care. J Stroke Cerebrovasc Dis 24(2):424–430. CrossRefGoogle Scholar
  80. Zarit SH, Todd PA, Zarit JM (1986) Subjective burden of husbands and wives as caregivers: a longitudinal study. Gerontologist 26(3):260–266. CrossRefGoogle Scholar

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© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Department of Management, Economics and Industrial EngineeringPolitecnico di MilanoMilanItaly
  2. 2.Campus Bio-Medico University Hospital of RomeRomeItaly

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