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).
During illness and hospitalisation—events affecting the individual's life as well as their family as a whole—personalised care is often carried out by unpaid primary or informal carers (Åstedt-Kurki, 2010; Mattila et al, 2014). Most often, spouses are those assuming caregiving responsibilities when such needs arise. If there is no spouse or the spouse is not able to care for the patient then adult children and close family members, usually females, are there to help (Larsson and Thorslund, 2002; Quattrin et al, 2009; Bragstad et al, 2014a; Rodríguez-Gonzalo et al, 2015).
As chronic conditions often can result in complications and disabilities, it is common for carers to feel helpless and unable to fulfil the patient's increased physical and mental needs, as well as being under financial and psychosocial pressure (Sapountzi-Krepia et al, 2008a; Lavdaniti et al, 2011; Stavrou et al, 2014). Shock, anxiety, guilt, depression and fear are experienced by the majority of carers (Mattila et al, 2014). The burden of caring for a patient with chronic illness is perceived as a chronic stressor and leads to negative psychological, behavioural, economic and physiological effects, causing lifestyle disruption, social seclusion, greater out-of-pocket and lost productivity costs, and withdrawal from any leisure activities (Kuscu et al, 2009; Bragstad et al, 2014b; Lee et al, 2015; van Eechoud et al, 2016). On the other hand, some researchers argue that caregiving could have positive effects on family members, improving relationships with the patient and resulting in feelings of fulfilment (Teschendorf et al, 2007; van Eechoud et al, 2016). Therefore, the role of informal carers is multidimensional, as they have to be patient advocates, friends and partners, while being responsible for decision making. It is estimated that in Greek hospitals, a quarter of the informal carers are spending approximately 40 hours a week providing care for their relative (Sapountzi-Krepia et al, 2006; Statharou et al, 2011).
The major reasons that older people require rehabilitation are stroke (cerebrovascular accident) and hip fracture (Cameron and Kurrle, 2002). Stroke is the second cause of morbidity worldwide (Lozano et al, 2012). In Greece, it is estimated that strokes affect 3100 per million population of those over 45 years (Pitsavos et al, 2003). Strokes usually cause motor disabilities and thus, they are considered the leading reason for rehabilitation (Kolominsky-Rabas et al, 2001). Another orthopaedic problem prevalent among older adults, which requires rehabilitation care, is hip fracture. The number of hospital admissions for hip fractures continues to increase among adults over 65 years old, leaving patients with functional disabilities (Nahm et al, 2010), unless appropriate interventions are implemented (MacLeod et al, 2005; Shawler, 2006). Hip fracture patients undergo a very stressful period and their carers face enormous challenges (Nahm et al, 2010).
Although informal caregiving has been extensively studied, to the authors' knowledge there have been no studies about informal carers' experiences and feelings during hospitalisation in rehabilitation settings.
Aim
The aim of this qualitative research was to explore the experiences and feelings of informal carers who care for patients hospitalised in rehabilitation settings and, further, how these experiences and feelings change during hospitalisation. The ultimate goal was to provide an understanding of how health professionals can support informal carers in their role in rehabilitation settings.
Methods
Design
A descriptive exploratory design with a qualitative approach was used in order to study the in-hospital informal carers' experiences and feelings while providing care for long-term hospitalised patients and, further, to identify any differentiation in the carers' experiences and feelings during the period of providing care for their patients. A qualitative approach was used, because it offers the opportunity to the researcher to study the ideas, experiences and feelings of the subjects under study. Moreover, in qualitative research the exact words and expressions of the participants are recorded (Elo and Kyngäs, 2008).
Participants
Participants in the present study were selected by convenience purposive sampling and included family members and friends providing in-hospital informal care for patients hospitalised in a private rehabilitation centre in Greece. This private rehabilitation centre is located in a city with a population of approximately 150 000 inhabitants, situated in the middle of mainland Greece.
Eligible participants were those providing care for long-term hospitalised patients with a minimum of 1 month's hospitalisation, and they had to understand and speak Greek. Informal carers who were health professionals or were paid for their services were excluded. The informal carer's role in the rehabilitation centre included: assisting with everyday nursing care, in the care of patient's personal hygiene, in feeding, and taking the patient to rehabilitation rooms when needed. All eligible participants were approached by the main researcher and after being informed about the purpose of the study, confidentially issues and the possibility to withdraw from the study without any repercussion for them or the patients' current or future care, they provided their signed consent. Twenty informal carers fulfilled the inclusion criteria; however, five of them declined to participate for personal reasons.
Data collection
A total of 15 individual interviews in Greek were conducted. All interviews took place within the rehabilitation centre, in an office that was allotted by the head nurse, in order to ensure privacy. All interviews lasted for approximately 45 minutes and were tape-recorded.
The first author (KAP) conducted the interviews using an interview guide in Greek. KAP is a registered nurse and she had no previous relationship with the study participants. She was a master's student with experience in conducting interviews. The first part of the interview included sociodemographic data of both carers and patients, such as gender, age, professional status, educational status, family type and members, relationship with patient, as well as patient's health status, such as disease and hospitalisation time. Furthermore, 15 open-ended questions were included about the informal caregiver's experiences and feelings during hospitalisation. More specifically the interview evolved around the care provider's life and the care delivered to the patient, their experiences regarding the care in general during rehabilitation, and their own feelings towards themselves and their patient.
Ethical considerations
Ethical approval was obtained from the University of Thessaly (Greece) and permission was also given by the administration of the rehabilitation centre. In addition, all participants gave informed consent and the researchers ensured that anonymity was preserved.
Data analysis
Data were analysed by qualitative content analysis, a method of analysing written, verbal or visual communication messages (Elo and Kyngäs, 2008). Interviews were first transcribed verbatim. Afterwards the research team checked the accuracy of the transcripts. The researchers ensured that data saturation was reached. Then, two of the researchers (ES and TK) repeatedly read the participants' responses to the open-ended questions in order to familiarise themselves with the data, develop a clear understanding of the material and identify included concepts. Each researcher worked independently. After identifying and coding the responses, the researchers discussed potential response categories and subcategories, made necessary adjustments, and agreed to a final list of response categories and subcategories.
Results
In the present study, all participants were female, the wives of the hospitalised patients. In addition, one-third of the informal carers were not employed in any job and were homemakers. The mean age of the participants was 62.3 (±17.2) years old. Seven of them had finished high school and only three were university graduates. Twelve of the patients being cared for were recovering from a stroke and three from a hip fracture.
The categories and sub-categories that emerged from the analysis on the participants' experiences and feelings are presented below using quotes from their answers.
Feelings and emotions
The participants shared the feelings and emotions that occurred and were experienced during the hospitalisation of their husband in the rehabilitation centre, which included:
Feelings towards the patient
Informal carers, at the onset of their husband's condition, described that they felt distress:
‘I felt stressed, sad and afraid about his health.’
‘Terror and fear, I surely did not know how to act.’
However, they claimed that later on, during hospitalisation, they felt a bit more reassured and encouraged about their patient's health status:
‘Now that I see an improvement in his health status, I am pleased and I am a bit more encouraged.’
‘Now I feel better. I think it is because they have explained his health status and because I know that we have the best possible care.’
Feelings towards themselves
Participants said that, in the beginning, they had anxiety and stress regarding their role as carers and the demands deriving from it:
‘I felt anxious and much stressed due to all those demands that the illness is causing [sic]’
‘Fear, anxiety, worry and agony for what had happened and what is coming next.’
In addition, some participants stated that being in the rehabilitation process made them feel ready, and having enough courage to face the new situation and they were calm because now they were informed about their patient's health status. On the other hand, some reported despair and resignation:
‘Now I understand what is happening … and now I feel much better.’
‘I feel much better. The doctors are giving me strength.’
‘Since that day, our family's life is a living hell.’
Participants stated that during hospitalisation there was no time for themselves and their needs, there was no time to think about themselves, and therefore no feelings for them:
‘When I look at him being like that, my heart is torn to pieces. Do you think that I could think about myself?’
‘Since the day that happened, I left my job and my life.’
‘Do you think that I have time to show my feelings? … All day I am occupied with my husband's care, there is no time for me.’
They mainly felt fatigued and exhausted mentally and physically:
‘Exhaustion, resignation from my life and fear that I will manage to care for him.’
‘It is exhausting, physical and emotionally.’
Feelings regarding the delivered care
Participants reported that, initially, they felt confused and stressed regarding the procedures that they had to perform in order to care for their husbands. However, they stated that they were satisfied with the care provided during hospitalisation, while some of them stated that they were afraid about providing care at home, without any specialised help:
‘At the beginning I felt stressed about the care I had to perform, but here everyone is so kind and now I feel much more confident.’
‘At the beginning I felt lost [with the care].’
‘We have specialised help and care. This is very important.’
‘They show to me and they explain how I can perform these procedures alone at home.’
‘At home I am afraid that things are going to be more difficult.’
Feelings regarding the new life situation
Participants described that initially they felt misfortune for what had happened, while, later, they accepted the new health status, but, they still felt stressed about the loose ends that they have, and the uncertainty of their new life:
‘Why was he cursed like that?’
‘I am thinking about the house, it is left uninhabited so long.’
‘I am considering all the things that have to be done and I lose my mind.’
Experiences
Participants shared their experiences during their husbands' hospitalisation in rehabilitation care.
Experiences regarding health professionals and the delivered care
Participants were mainly sharing positive experiences. More specifically, they reported that the personnel were kind, polite, facilitating and willing to teach them the daily routine of care:
‘Doctors are so polite.’
‘Everyone is very good, especially nurses, they are so helpful and willing to help. I honestly get a lot of help and strength from them.’
Experiences regarding other patients' informal carers
Participants talked about their experiences, knowledge and feelings that they share with other patients' informal carers during hospitalisation:
‘Thank God there are other ladies here too, having their husbands with similar problems … we talk a bit … we share our problems.’
Expectations
Among their feelings and emotions and their experiences in the rehabilitation care, participants also shared their thoughts about the future. Participants said that they were optimistic and hoped for the future. They were hoping and wishing for an improvement in their patient's health status and their return home while some placed their hopes on prayers to God:
‘I wish that we get better and we can go home.’
‘In our situation nobody can help, only God.’
They also had some expectations about themselves in terms of getting some rest.
‘I am worn out … I need sleep.’
Discussion
The present study explored the feelings and experiences of people caring for long-term hospitalised patients in rehabilitation care. It found different feelings and positive aspects in their experiences during hospitalisation, including hopes and expectations for the future.
The informal carers who participated in the current study were wives of patients in rehabilitation care. This was expected since Greek families participate in the care of their hospitalised relatives (Sapountzi-Krepia et al, 2008b). Informal carers, especially in Greece, Spain and Italy, are often forced to act as coordinators of care provision and also provide large amounts of practical care (Triantafillou et al, 2010). Furthermore, this finding is similar to earlier studies conducted in Greece, which found that the burden of patient care in a family is mainly undertaken by spouses or female close relatives (Sapountzi-Krepia et al, 2008a; Samonis et al, 2009). Similar findings have been reported in a variety of studies conducted in other countries too, such as Turkey (Yazicioğlu et al, 2001), Sweden (Larsson and Thorslund, 2002), Italy (Quattrin et al, 2009), Norway (Bragstad et al, 2014a), Iran (Khosravan et al, 2014) and Spain (Rodríguez-Gonzalo et al, 2015).
The results of the present study showed that fear, anxiety and intense concern are typical for the informal carers at the onset of the illness and admission to the rehabilitation centre. However, later, during the hospitalisation they become more optimistic and reassured by the provided care and instructions for care, which was also evident in previous studies (MacNeil et al, 2010; Anderson et al, 2013). Furthermore, the fact that health professionals were there to advise them may also have helped. The literature examined suggests that nurses are an important source of support both for informal carers and patients themselves during hospitalisation (Mattila et al, 2014). They use different kinds of approaches and support than other professionals involved in the provision of care (Davidson et al, 2009).
When the participants mentioned their feelings regarding themselves, the majority of the respondents argued that fatigue and lack of time did not allow them to think about their own self and their own problems. Their husband, who was in need, was the priority and that left no time for their own needs. Similarly, in an earlier study, the carers of patients with severe lung disease were neglecting themselves (Brewin, 2004). Withdrawal, seen in the current study, was also reported in an earlier study, where a correlation between physical and mental fatigue and depression was shown (Al-Janabi et al, 2013).
However, during hospitalisation, informal carers felt confident about their relative's condition, and felt that they had enough courage to continue due to the positive reinforcement they received from the health professionals. One of the goals of a rehabilitation centre is not only to assist patients to recover to their optimal functional ability, but also to teach and encourage both patients and carers to perform activities of daily life as independently as possible (Nahm et al, 2010).
Moreover, there were participants who did not express any feelings about themselves, since they had no time for themselves. These findings are in accordance to other studies (Quattrin et al, 2009; Bragstad et al, 2014a), which have demonstrated that informal carers do not show emotions and worries regarding themselves but only about the health of their loved one.
The informal carers' experiences regarding the rehabilitation centre's staff were positive, being there for the patients but also the informal carer as well. Nurses are not there only to ease physical symptoms and pain, but also to collaborate with informal carers during transition from the hospital to rehabilitation centre and from there to home (Ganapathy et al, 2015). In addition, it is supported that caregivers benefit from receiving support from health professionals, family, friends, and care-giving peers (Cameron et al, 2013) which was also mentioned by the study participants. They mentioned that having discussions and sharing with other informal carers was very supportive and had a positive effect on them.
Additionally, the participants discussed their expectations for the future—their desire to improve the patient's health status and to return to their prior lives dominated their thoughts. In these terms, research has supported the importance of collaboration between informal carers and healthcare personnel prior to discharge in order to achieve positive outcomes (Geerlings et al, 2005; Lindhardt et al, 2008).
Finally, it was noteworthy that many of the participants were addressing God and praying for recovery and improvement for their loved one. The effect of religion and spirituality on health has been studied, showing a positive effect and implications for practice (Koenig, 2012).
Limitations
One possible limitation of the study was that it used a qualitative approach and thus it is not possible to generalise findings; however, even with the small number of participants there was data saturation supporting the study findings. Another limitation is the fact that data were collected only in one provincial private rehabilitation centre in Greece. However, the current findings are supported by the literature. Finally, the lack of male carers participating in the study may have led to bias and limit the study's transferability, but given the details of the method provided, it should be possible to conduct the same study somewhere else with a different group to try to obtain male carers' views.
Conclusion
As evident from the current study, relatives who take care of patients in a rehabilitation centre can experience feelings of worry and anxiety due to the change in health status leading to uncertainty regarding the new life situation. Although the participants expressed negative feelings, there have also been positive aspects, mainly later in the rehabilitation process, when they become accustomed to the new situation. Furthermore, the participants mentioned, as positive aspects within their feelings and experiences, support from the staff and the other informal carers, which gave them confidence and courage. Thus, health professionals should plan and implement support interventions within the rehabilitation settings in order to address those needs in terms of practical guidance not only within the framework of patient care but also relating to the psychological wellbeing of the informal carers. Moreover, the fact that their need for rest is not addressed should be considered by rehabilitation centres, who may need to find an alternative for the informal carers.