Al-Janabi H, McCaffrey N, Ratcliffe J. Carer preferences in economic evaluation and healthcare decision making. Patient. 2013; 6:(4)235-239

Anderson LA, Edwards VJ, Pearson WS, Talley RC, McGuire LC, Andresen EM. Adult caregivers in the United States: characteristics and differences in well-being, by caregiver age and caregiving status. Prev Chronic Dis. 2013; 10:(3)

Åstedt-Kurki P. Family nursing research for practice: the Finnish perspective. J Fam Nurs. 2010; 16:(3)256-268

Bonovas S, Nikolopoulos G. High-burden epidemics in Greece in the era of economic crisis. Early signs of a public health tragedy. J Prev Med Hyg. 2012; 53:(3)169-171

Bragstad LK, Kirkevold M, Hofoss D, Foss C. Informal caregivers' participation when older adults in Norway are discharged from the hospital. Health Soc Care Community. 2014a; 22:(2)155-168

Bragstad LK, Kirkevold M, Foss C. The indispensable intermediaries: a qualitative study of informal caregivers' struggle to achieve influence at and after hospital discharge. BMC Health Serv Res. 2014b; 14:(1)331-343

Brewin A. The quality of life of carers of patients with severe lung disease. Br J Nurs. 2004; 13:(15)906-912

Cameron ID, Kurrle SE. 1: Rehabilitation and older people. Med J Aust. 2002; 177:(7)387-391

Cameron JI, Naglie G, Silver FL, Gignac MAM. Stroke family caregivers' support needs change across the care continuum: a qualitative study using the timing it right framework. Disabil Rehabil. 2013; 35:(4)315-324

Davidson JE. Family-centered care: meeting the needs of patients' families and helping families adapt to critical illness. Crit Care Nurse. 2009; 29:(3)28-34

Elo S, Kyngäs H. The qualitative content analysis process. J Adv Nurs. 2008; 62:(1)107-115

Ganapathy V, Graham GD, DiBonaventura MD, Gillard PJ, Goren A, Zorowitz RD. Caregiver burden, productivity loss, and indirect costs associated with caring for patients with poststroke spasticity. Clin Interv Aging. 2015; 10:(4)1793-1802

Home care across Europe: Current structure and future challenges. Observatory Studies Series 27. European Observatory on Health Systems and Policies. 2012. (accessed 13 June 2019)

Geerlings SW, Margriet Pot A, Twisk JWR, Deeg DJH. Predicting transitions in the use of informal and professional care by older adults. Ageing and Society. 2005; 25:(1)111-130

Khosravan S, Mazlom B, Abdollahzade N, Jamali Z, Mansoorian MR. Family participation in the nursing care of the hospitalized patients. Iran Red Crescent Med J. 2014; 16:(1)e12686-e12692

Koenig HG. Religion, spirituality, and health: the research and clinical implications. International Scholarly Research Notices—Psychiatry. 2012;

Kolominsky-Rabas PL, Weber M, Gefeller O, Neundoerfer B, Heuschmann PU. Epidemiology of ischemic stroke subtypes according to TOAST criteria: incidence, recurrence, and long-term survival in ischemic stroke subtypes: a population-based study. Stroke. 2001; 32:(12)2735-2740

Kuscu MK, Dural U, Önen P, Yaşa Y, Yayla M, Basaran G, Turhal S, Bekiroğlu N. The association between individual attachment patterns, the perceived social support, and the psychological well-being of Turkish informal caregivers. Psychooncology. 2009; 18:(9)927-935

Laitinen-Junkkari P, Meriläinen P, Sinkkonen S. Informal caregivers' participation in elderly-patient care: an interrupted time-series study. Int J Nurs Pract. 2001; 7:(3)199-213

Larsson K, Thorslund M. Does gender matter? Differences in patterns of informal support and formal services in a Swedish urban elderly population. Research on Aging. 2002; 24:(3)308-336

Lavdaniti M, Raftopoulos V, Sgantzos M In-hospital informal caregivers' needs as perceived by themselves and by the nursing staff in Northern Greece: A descriptive study. BMC Nurs. 2011; 10:(1)

Lee KW, Choi SJ, Kim SB, Lee JH, Lee SJ. A survey of carers ‘knowledge about caring for stroke patients. Ann Rehabil Med. 2015; 39:(5)800-815

Lindhardt T, Nyberg P, Hallberg IR. Collaboration between relatives of elderly patients and nurses and its relation to satisfaction with the hospital care trajectory. Scand J Caring Sci. 2008; 22:(4)507-519

Lozano R, Naghavi M, Foreman K Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet. 2012; 380:(9859)2095-2128

Mattila E, Kaunonen M, Aalto P, Åstedt-Kurki P. The method of nursing support in hospital and patients' and family members' experiences of the effectiveness of the support. Scand J Caring Sci. 2014; 28:(2)305-314

MacLeod M, Chesson RA, Blackledge P, Hutchison JD, Ruta N. To what extent are carers involved in the care and rehabilitation of patients with hip fracture?. Disabil Rehabil. 2005; 27:(18-19)1117-1122

MacNeil G, Kosberg JI, Durkin DW, Dooley WK, DeCoster J, Williamson GM. Caregiver mental health and potentially harmful caregiving behavior: the central role of caregiver anger. Gerontologist. 2010; 50:(1)76-86

Nahm ES, Resnick B, Orwig D, Magaziner J, DeGrezia M. Exploration of informal caregiving following hip fracture. Geriatr Nurs (Minneap). 2010; 31:(4)254-262

Pitsavos C, Panagiotakos DB, Chrysohoou C, Stefanadis C. Epidemiology of cardiovascular risk factors in Greece: aims, design and baseline characteristics of the ATTICA study. BMC Public Health. 2003; 3:(1)

Quattrin R, Artico C, Farneti F, Panariti M, Palese A, Brusaferro S. Study on the impact of caregivers in an Italian high specialization hospital: presence, costs and nurse's perception. Scand J Caring Sci. 2009; 23:(2)328-333

Rodríguez-Gonzalo A, García-Martí C, Ocaña-Colorado A, Baquera-De Micheo MJ, Morel-Fernández S. Efficiency of an intensive educational program for informal caregivers of hospitalized, dependent patients: cluster randomized trial. BMC Nurs. 2015; 14:(1)

Samonis G, Giannousi Z, Varbobitis IC, Sardi TA, Falagas ME, Falagas ME. Family support of elderly patients hospitalized in a public tertiary hospital in Greece: a prospective study. J Am Geriatr Soc. 2009; 57:(7)1302-1304

Sapountzi-Krepia D, Kalofissudis I, Psychogiou M, Peterson D, Sakellari E. Seeing to the future through the shadow of the nursing staff shortage: Greek registered nurses' views on a possible establishment of a family nursing policy in Greek hospitals. ICUs and Nursing Web Journal. 2001; 7:5-10

Sapountzi-Krepia D, Raftopoulos V, Sgantzos M, Dimitriadou A, Ntourou I, Sapkas G. Informal in-hospital care in a rehabilitation setting in Greece: an estimation of the nursing staff required for substituting this care. Disabil Rehabil. 2006; 28:(1)3-11

Sapountzi-Krepia D, Lavdaniti M, Psychogiou M Nursing staff shortage and in-hospital informal care in an oncology hospital in Greece: the nursing staff's perceptions. Int J Nurs Pract. 2008a; 14:(3)256-263

Sapountzi-Krepia D, Raftopoulos V, Psychogiou M Dimensions of informal care in Greece: the family's contribution to the care of patients hospitalized in an oncology hospital. J Clin Nurs. 2008b; 17:(10)1287-1294

Shawler C. The empowerment of older mothers and daughters: rehabilitation strategies following a hip fracture. Geriatr Nurs (Minneap). 2006; 27:(6)371-377

Investigation of the burden of mentally ill carers. Interscientific. 2011. (accessed 17 June 2019)

Informal care provision by the family to hospitalised patients in a rehabilitation clinic of Western Greece. 2014. (accessed 13 June 2019)

Teschendorf B, Schwartz C, Ferrans CE, O'mara A, Novotny P, Sloan J. Caregiver role stress: when families become providers. Cancer Contr. 2007; 14:(2)183-189

Informal care in the long-term care system: European overview paper (working paper 5). 2010. (accessed 13 June 2019)

van den Berg B, Al M, Brouwer W, van Exel J, Koopmanschap M. Economic valuation of informal care: the conjoint measurement method applied to informal caregiving. Soc Sci Med. 2005; 61:(6)1342-1355

van Eechoud IJ, Grypdonck M, Leman J, Van Den Noortgate NJ, Deveugele M, Verhaeghe S. Caring for family members older than 50 years of Turkish and Northwest African Descent. Cancer Nurs. 2016; 39:(1)51-60

Yazicıoğlu K, Gündüz S, Özgül A, Alaca R, Arpacioğlu O. Nursing care in spinal cord injuries in Turkey. Spinal Cord. 2001; 39:(1)47-50

Informal carers' experiences and feelings during rehabilitation

27 June 2019
Volume 28 · Issue 12


The purpose of this study was to explore the experiences and feelings of people caring for patients with long-term diseases in a rehabilitation centre. A qualitative research approach was used. Fifteen informal carers were interviewed. The study was conducted in a rehabilitation centre in Greece. Three themes emerged. The first was feelings regarding the patient and the carers themselves, as well as the type of care provided and life at home after discharge from the rehabilitation unit. The second was experiences regarding health professionals and delivered care, and other carers. The third theme was expectations and thoughts about the future. Health professionals should plan and implement support interventions within rehabilitation settings in order to address carers' needs in terms of practical guidance not only within the framework of patient care but also relating to the psychological and physical wellbeing of informal carers.

Population projections for the year 2080 report that people over 65 years old will account for 28.7% of the EU-28's population compared with 18.9% in 2015 (Genet et al, 2012). Based on these projections, it is anticipated that people with problems commonly associated with ageing such as stroke, hip fractures, or spine problems, will have increased needs for hospitalisation and rehabilitation health care.

In recent years, the Greek National Health System (GNHS) has suffered major setbacks due to austerity and financial adjustment policies resulting in lower recruitment of new health professionals compared with the number of those retiring (Bonovas and Nikolopoulos, 2012). During such times, the GNHS cannot cope with the increasing need for services. Family members are asked to help out during the patient's hospital stay, make sure that their needs are met such as feeding and going to the toilet, assist with mobilisation when it is needed (for example, after surgery), or participate in basic care interventions such as bed-making, bed-bathing, monitoring intravenous infusions, and repositioning bedridden patients. It has to be stressed that the nursing staff shortage is a long-running problem in Greece and the practice of using hospitalised patients' relatives as an unpaid workforce is rooted in the Greek cultural tradition around family and is also unofficially supported by the state as way to save money (Sapountzi-Krepia et al, 2001; 2006; 2008a; Lavdaniti et al, 2011; Stavrou et al, 2014). This type of assistance is called ‘informal caring’ and the people providing regular and ongoing assistance, without receiving any payment for the care given, are called informal carers (Laitinen-Junkkari et al, 2001; van den Berg et al, 2005; Al-Janabi et al, 2013).

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