Vita tua,mors mea : The experience of family caregivers of patients in a vegetative state

Abstract

This study aims to understand whether, and possibly how, caregivers of patients in a vegetative state experience an emotional paradox between life and death. Individual semi-structured interviews were conducted with 24 (19 females and 5 males) caregivers of vegetative state patients living in northern Italy. Data were analysed using interpretative phenomenological analysis. Caregivers felt they were the only ones able to understand and give answer to patients’ needs, but neglected their own lives in their total commitment to the patient. The findings highlight the importance for vegetative state caregivers in considering new possibilities of life that go beyond the assistance of vegetative state patients.

Keywords

caregivers family health psychology qualitative methods vegetative state

Introduction

The concept of consciousness can be described as the combination of two components: arousal and awareness. Vegetative state (VS) is a disorder of consciousness in which patients recover arousal but not their awareness (Laureys and Owen, 2004). VS is defined by the opening of the eyes, either spontaneously or after stimulation, and preserved autonomous functions (e.g. breathing usually occurs without assistance). Patients in a VS exhibit no intelligible verbalization, no voluntary response and no signs of awareness of self or the environment (Gosseries et al., 2011; Laureys et al., 2010). VS is defined as persistent until 1 month after traumatic or non-traumatic brain damage, although it does not imply irreversibility. However, a permanent VS is irreversible and is defined at 3 months after a non-traumatic injury or 12 months after a traumatic injury (Laureys and Owen, 2004). The distinction between persistent and permanent VS is much debated, as it cannot be made with certainty, so it is suggested to use the general term VS and to detail how long the patient is in VS (Royal College of Physicians, 2003; Zasler, 2004).

International data suggest that the incidence of VS is about 5 to 25 per million inhabitants, 6 months after the diagnosis (Donis and Kräftner, 2011; Elvira De La Morena and Cruzado, 2013; Saoût et al., 2010). The life expectancy of these patients has been estimated at 2–5 years (American Academy of Neurology, 1995), although it may be longer. In fact, disease duration was in excess of 10 years for 3.3 percent of an Italian sample enrolled in a recent study population (Leonardi et al., 2013). The consequences of a VS condition and its duration affect the family, especially the patient’s spouse, who must cope with intrapersonal, interpersonal and social stressors (Hamama-Raz et al., 2012).

Family caregivers care for their VS loved ones, even if hospitalized, for several hours a day. Some lose their jobs, and many lose their interests, hobbies and friends, and feel socially isolated (Chiambretto et al., 2001; Chiambretto and Vanoli, 2006). Some studies evidenced high levels of anxiety, depression, family strain and prolonged grief, a condition typified by intrusive thoughts, a sense of guilt, feeling stunned, unfulfilled, empty and meaningless since the loss (Chiambretto et al., 2010; Cipolletta et al., 2014a; Elvira De La Morena and Cruzado, 2013; Leonardi et al., 2012; Pagani et al., 2013).

Caregivers’ mental health conditions are subject to change according to the duration of the patient’s illness (Giovannetti et al., 2013). In particular, quality of life worsens and family strain (defined by caregiver’s perceived emotional burden, social involvement problems, need for knowledge of the disease, quality of family relationships and thoughts of death) increases (Bastianelli et al., 2014). Caregivers are often alone in coping with an irreversible situation and are increasingly helpless during this time as this condition influences their difficulties in adopting an adaptive coping strategy (Chiambretto et al., 2001; Cipolletta et al., 2014a). Stern et al. (1988) defined the condition of VS caregivers as an emotional paradox. As patients are not dead, and present involuntary movements are more independent than when in intensive therapy, caregivers cannot develop a strategy of mourning and live in limbo, between life and death, that reflects the condition of the patient (Chiambretto and Vanoli, 2006). This paradox resides mainly in the loss of consciousness in an apparent awaking and living body that characterizes patients in VS. In fact, if compared with minimally conscious state (similar to VS but showing subtle and inconsistent signs of conscious awareness), patients in VS show no sign of conscious awareness.

Another critical issue concerns the opinion of caregivers towards life-sustaining treatment. Chiambretto and Guarnerio (2007) evidenced ambivalence in caregivers’ opinions; they were against this kind of treatment, but when they had to evaluate certain ‘aggressive treatment’, they said these types of therapies were never excessive. Kuehlmeyer et al. (2012) heightened the same ambivalence, and it underscored what caregivers may prefer for themselves, if they were in the same condition as the patient.

The aim of our study was to explore all these aspects by giving voice to family caregivers. We asked them to tell us their experience of caring for a VS patient. We wanted to understand if, and eventually how, they experienced the emotional paradox between life and death. We also wanted to find out if there were common features that might constrain or help cope with the situation. Our intention was to identify limitations and resources in caring for the VS patient.

Methods

Participants

We involved 24 caregivers of VS patients recruited from five nursing homes in northern Italy specializing in the care of VS patients. The caregivers were six mothers, one father, six wives, two husbands, two sons, five daughters, one sister and one niece. They ranged in age from 32 to 70 years. Of them, 14 were employed; the others were retired, resigned or unemployed.

The patients were 17 men and 7 women and ranged in age from 23 to 85 years. Only two had been in a VS for less than 1 year (8 and 9 months, respectively); 4 patients had been in a VS for 1 year, 15 patients between 2 and 10 years, 2 patients between 12 and 14 years and 1 patient for 27 years. In all, 22 patients lived in a nursing home specializing in the long-term rehabilitation of VS patients, while 2 patients lived at home. In seven cases, VS was caused by a car accident, one by a work accident and one by a violent mechanical asphyxia. The other cases were caused by heart and circulation problems.

The final number of participants was not predetermined. Our sampling ended once we considered theoretical saturation had been reached. This is the point when gathering additional data yields no new or relevant information with respect to the emerging theory (Given, 2008).

Participation was voluntary. The heads of the nursing homes mediated contact and gave us the names of the caregivers who were taking care of VS patients at home. Only five potential eligible caregivers refused to participate. Those who accepted were contacted by phone and they were given an appointment with the interviewer, a researcher specializing in performing clinical interviews. An academic ethical committee approved the study and caregivers gave their written informed consent to participate in the research.

Data collection

We conducted semi-structured interviews (Kvale, 2007) to generate hypotheses and provide rich descriptive information about the phenomenon, and to allow caregivers to tell us their experiences as they preferred. This way we would not only focus on the topics we wanted to explore but also discover topics relevant to the caregivers.

We developed a semi-structured interview guide based on our review of the literature on caregivers of VS patients and previous experience with similar interviews (Cipolletta, 2013b; Cipolletta and Amicucci, 2014; Cipolletta et al., 2014b). After a brief general introduction to the interview, participants were encouraged to speak freely about their experiences. Next, we asked questions to analyse topics relevant to our goal: the first period of hospitalization after brain damage and VS diagnosis, caregiving experience and family relationships, for example, What were family relationships before and after VS occurrence? How was the relationship with the patient? What were their reactions to the diagnosis and how did their lives change after this? How did they feel about the patient’s condition and about the changes in their lives?

We adopted a curious and facilitative, rather than a challenging and interrogative, stance. The interviews lasted from 75 to 100 minutes and were audiotaped and transcribed verbatim.

Data analysis

Interview transcripts were analysed using interpretative phenomenological analysis (IPA). The aim of this approach is to understand the subjective experience of participants, by identifying recurrent themes in their narratives. Following the guidelines identified by Smith et al. (2009), we proceeded to the analysis of the transcripts using a bottom-up procedure, whereby the researcher generates codes from the data and not from a pre-existing theory, and including a series of recursive steps. The first step involved a repeated reading of the transcripts to become familiar with the participants’ narratives and to annotate what was significant. In the second step, recurrent themes were identified and linked to quotes that expressed the essence of their contents. Next, themes were clustered together into super-ordinate themes. Finally, we individually re-read all interviews to verify whether the identified themes were recognizable in the transcripts and to ensure that all salient themes had been found. Disagreements between our individual interpretations were resolved by discussion.

In accordance with the quality criteria for assessing validity in IPA (Smith et al., 2009), coherence and transparency were achieved by reporting how interviews were conducted and analysed, and using thick quotes from the interviews. The depth and breadth of the interviews enabled us to claim a comprehensive, authentic understanding of the experiences of the caregivers. Moreover, an independent auditor reviewed and verified the consistency of this research, and field notes, interview summaries, analysis notes and process notes were preserved for examination and to determine potential bias. Finally, this study meets the principle of impact and importance because it deals with an important and useful matter and it fosters a change while it is conducted. In fact, telling their experience during the interview may allow participants to elaborate it.

Results

From the comparison of all the data, we identified six main themes: reactions to VS occurrence, relationship with the patient, assistance experience, end-of-life preferences, family relationships and resources caregivers considered as source of help. Quotes from the participants are reported to illustrate the identified themes and the relationship between caregiver and patient is specified in parentheses.

Reactions to VS occurrence

All caregivers described their first reaction to VS occurrence as ‘totally devastating’ (C2, mother) due to its unpredictability and the sense of helplessness they felt. Of them, 16 caregivers stated they felt anger towards medical personnel because of the uncertainty of the prognosis and possibilities for recovery, and later, because physicians took their hope away:

They [physicians] never discussed the diagnosis, they said ‘We don’t know what might happen’. When they said ‘There’s nothing more to do’ I became angry; they should not say such a thing. (C5, mother)

Everyone said it was very difficult to live with the diagnosis and the changes it made to their lives; 11 caregivers said they had lost hope after the first years of illness when they realized the seriousness of the situation; 4 never lost hope of an improvement. A total of 9 caregivers did not hope for any kind of recovery because they were aware of the seriousness of the injuries and did not want the patient to be aware of their condition:

I never hoped for a recovery. When the physiotherapists said to me ‘Now he can do it, look at that’ I thought that I didn’t want it. It was better he didn’t recover any possibility to be conscious about his state. (C2, mother)

Relationship with the patient

Communication between caregiver and patient is non-verbal. Caregivers talked about their need to be in touch with the patient, in order to stay close to them. Through physical contact they transmitted their presence and emotions to the patients. By taking care of their body caregivers dignified the patients. Nine caregivers also said that thanks to their knowledge of the patient they could recognize signs of illness before the nurses:

His body is all that remains for me. (C8, mother)

He only has his body to communicate with me. He can’t say where he hurts or what he wants. I understand it through his body signals. (C6, mother)

When there are other people around he is not calm, maybe he does not recognize me, but he recognizes that I am the one who looks after him. (C14, wife)

I’m always here with him, and this need is mine, absolutely. I need to be able to touch him while he’s here, I enjoy him in this way. I can’t think about him being alone here. (C2, mother)

One day I saw that he was sick, everybody said me ‘no, you’re wrong, he’s fine’ but I saw he wasn’t. The day after, he indeed had a crisis. (C9, wife)

Only six caregivers described patients as ‘normal persons’ (C5, mother), who understand and are aware of their condition and are glad and thankful for their care. All the other caregivers were aware of the patients’ cognitive restraint and said that patients were not mindful about their condition and their environment, but at the same time they spoke as though the patients had thoughts, emotions and responses:

I hope he does not realize his condition; I can’t think about this, he would be crazy. (C6, mother)

I understand when he’s fine; if I’m here he looks at me, smiles at me. (C4, wife)

Assistance experience

Caregivers talked about the physicians’ ‘raw way to communicate’ (C10, father) about patients. They also said that medical personnel did not understand their need to improve patients’ appearance or posture:

I always saw him barefoot. When he wore shoes for the first time I thought it was an achievement, but they [physicians] said ‘Bah, wearing shoes’ as if I could not understand that it was trivial in this situation. (C1, mother)

In all, 14 caregivers talked about the decision to transfer the patient into a nursing home; 9 said they were aware of the problems in moving patients at home and the need for continuous assistance and changes to the house. Nevertheless, they decided to transfer patients to a nursing home, but felt as if they were abandoning the patient:

At the beginning, leaving him here instead of caring for him at home was as if I was arranging his funeral I can’t think about him here and alone … but I know that here, he has what he needs. (C2, mother)

Three caregivers had no doubts about transferring the patient to a nursing home because they were worried about moving him at home. Two caregivers chose to move the patient at home because they thought that it was better, both for the patient and the family, that they lived with their families at home:

In this way [bringing the patient home] he [the patient] can stay with his family. A son is always a son and his family has to care for him. I never thought to transfer him into a nursing home. Here at home he has his bedroom, we’re carrying on, as ever. (C10, father)

A total of 18 caregivers spent most of their time with the patient; 7 of them had someone (familial or carer) who took care of the patient while they were at work. In two cases, caregivers took turns with other family members so they could stay with the patient once a week. In explaining the length of time they spent with the patient, caregivers pointed out hospital deficiencies. The hospital was considered a place that attends and gives aid to patients, but caregivers did not trust medical personnel and wanted to supervise their work:

He needs me, not other people. They [nurses] get him up, but I shave him and wash him. I care for him like no one else. He’s never cared for in the way you hope. When I see him in a bad way I’d like to strangle them. (C3, wife)

End-of-life preferences

In total, 19 caregivers talked about the resuscitation practices implemented after a severe brain injury or a prolonged anoxia; 14 said that even if these treatments were used with their loved ones, they now believed that they were senseless. Five of these caregivers made arrangements for non-aggressive treatment if the patient needed it in future, and two caregivers also said that sometimes they hoped the patient would die soon. These caregivers thought that patients were not aware of their condition, even if they maintained the ambivalence explained above:

It’s not right; they [medical personnel] know what kind of damage these patients have and it’s not right to resuscitate them in this way, not only for me, but also for him. (C7, wife)

If I knew how it was going to end I would have let her go a year-and-a-half ago. It would have been better both for her and for me (…) it would have been better to cry for her death. (C18, daughter)

Five caregivers were in favour of life-sustaining treatment because they could not bear to lose their loved ones, although some said that the patient might have disagreed. These caregivers believed the patient was fully aware of their condition, but could not take into account what might be their opinion, as they could not imagine their life without the patient. They considered themselves lucky to have the patient still with them:

Now I am threatened by the idea I might lose him. I do not cope well with his crises, maybe because I am afraid that I won’t see him anymore, even though I know it would be a relief. I should not be so egoistical, but he would leave a void. Now, everything I do is for him; my life would change again. (C9, wife)

He’s still with us, we can stay together. Sure, it would be better if he could speak with us, but I have my son, this is important, and I think he’s happier this way. (C10, father)

Caregivers admitted it was hard to always stand by the patient, but they did not see this as a burden. Of them, 10 caregivers said they did not remember how the patient was before the accident. They said that the person they were caring for was not the same person as before:

I say she died one year ago. Now I do what I have to do, but she is not [the same]. (C13, husband)

Family relationships

Caregivers described family relationships after the emergence of the patient’s VS. During the first period, family ties loosened because everyone suffered and reacted in a personal way, independently to other family members:

At the beginning you feel angry, you don’t understand what will happen. Thus, we [patient’s relatives] cannot share the pain and we argue over nothing. (C10, father)

In some families, this distance and silence went on for years and became the prevalent relationship model. This occurred mainly when the caregivers were the parents of the patient. Three caregivers said their relationship as a couple was compromised and it never recovered. This was due to the different ways mothers and fathers approached the patients. For example, mothers referred to the fathers’ difficulty in speaking about the situation, talking about and relating to their son in a VS. Other parents, in contrast, were able to be mutually supportive because they compared their experiences and arrived at a shared approach to the situation. After the initial phase, they recovered mutual support and considered the family as a resource. Married sons or daughters of patients could better face their parents’ condition, as they had their own family to support them:

It’s so painful, a mother and a father who are suffering so much and can’t help each other. (C2, mother)

I always tried to do something for our son, to improve his situation. My husband, in contrast, was not able to react. I told him to speak with his son, but he was not able to even talk about his son. (C5, mother)

We tried to overcome all our troubles, also in our relationship, to face this situation together and help each other. (C11, son)

When we [daughters] return home we find all is well, thanks to our helpful husbands and sons, it’s important in coping with the situation. (C24, daughter)

The wives of three patients, who had no children, said their lives were as a couple and so had lost their family unit. They went to live with their parents and did not often return to their usual home. Also, other caregivers said that it was hard to get used to the patient’s absence and they could not live calmly in their home.

Resources

Caregivers considered the patient’s condition as being the main factor that encouraged them to carry on. They needed to be in good health in order to care for the patient. They were afraid that something bad might happen to them, and for this reason, they sought to be proactive. How they coped with the situation made other relatives calmer.

In all, 16 caregivers said the majority of their friends moved away and avoided them and the patient during this time. Only in four cases did relatives and friends always participate in supporting and helping them to carry on:

Nobody wanted to see him, always me and his mum came here [hospital]. Other friends or relatives never wanted to come, as if in that way they could stay away from pain. (C3, wife)

Nine people talked about a weekly musical activity in the nursing home which was a great help for them as they could do something for the patient other than straightforward care. Six caregivers asked for psychological support during the first years of illness and said that it helped them: ‘You understand how to manage your pain and look after your own well-being’ (C10, father).

A number of caregivers described the opportunity to go out with friends or family as a help, because it kept their mind off the patient’s condition. Caregivers who chose to care for the patient at home did not report isolation or a loss of relationships. This choice allowed them to live with their VS loved ones, not only as patients but also as part of usual family life.

Discussion

Our study results showed how family caregivers reacted to VS occurrence, how they subsequently found a new way to communicate with the patient, what was their assistance experience and what were their end-of-life preferences for the patient. Participants also described their family relationships and the resources that helped them to cope with the situation.

Regarding the reaction to the diagnosis, caregivers talked about a sense of bewilderment and shock due to the unpredictability of the event. They also felt helpless and this caused difficulties in understanding the changes in their lives and how they should react to the situation. This stage of shock could last for 2 years.

The majority of caregivers believed that patients were not aware of their surroundings and did not accept this condition. They said that it would have been better if the patient had not been resuscitated at the time of the accident. Those who had been in this situation for 1 or 2 years believed that if the patients died it would be painful, but it would end their suffering. Only a few caregivers believed themselves fortunate to have the patient still with them and they were strongly convinced that the patient was as real as any other person.

The association between caregivers’ belief in the patient’s awareness and the difficulty to accept the patient’s death might lead to suppose that caregivers interpreted and wanted to respect patient’s will. Nevertheless, these caregivers wanted to keep the patient alive even if they believed that patients might have preferred to die. We might subsequently understand the belief in the patient’s awareness within the role that caring has in the caregiver’s life (Cipolletta, 2013b; Cipolletta et al., 2014b). If caregivers centre their lives on caring for the patient they might desire to keep the patient alive. Believing in patient’s awareness may help them to feel their relationship with the patient more real and alive.

Caregivers created a new relationship with the patient based on the care of the patient’s body. To understand the meaning of the body in a VS, Sartre’s (1943) distinction between Körper (the body in its physical and organic aspects, not animated) and Leib (which refers to the body as living and alive, in its psychological and social components) may be useful (Cipolletta, 2013a; Melia, 2013). Families and medical personnel handle a body, meant as Körper, which keeps its functions, but whose living component, the Leib, fails. Families keep Leib alive by supposing that VS patients are aware of their surroundings and try to satisfy their supposed needs. At the same time, they recognize that their relationship with the patient now passes exclusively through the care of their body, meant as Körper.

Caregivers must choose between an enormous sense of guilt if the patient is abandoned, as if dead, and profound resentment if solicitously tended, as if alive. They can come back to life only when the life of the patient ends (Chiambretto and Guarnerio, 2007). The caregiver’s condition appears not so much as mors tua vita mea, as if the death of the patient could give them a chance to return to life (Chiambretto and Guarnerio, 2007), but rather as vita tua mors mea, because caregivers buried themselves, who are still alive, in order to give life to the patient’s dead Leib.

Caregivers’ full involvement in patient care and difficulty in relating to others may increase their experience of social isolation, as described in previous studies (Chiambretto and Vanoli, 2006; Leonardi et al., 2012). Families that chose to keep the patient at home did not report this experience.

Some of our caregivers described their care and capacity to understand a patient’s needs and problems as irreplaceable and put in contrast the uniqueness that characterizes familial care of the patient with the care offered by the health care professionals of nursing homes. Health care professionals provide protection and assistance to the patient, but at the same time do not give the patient the care and dignity that family caregivers told to be the only who can provide.

This result may appear to contrast with those of previous studies (Chiambretto et al., 2010; Stern et al., 1988), which underlined that caregivers feel depressed and powerless towards patients. This apparent contradiction may be overcome if we consider the different focus of the present study in comparison with previous ones. We explored the caregiver’s role through a qualitative in-depth interview study, rather than measuring depression on a pre-formed scale. Thus, the sense of being irreplaceable may be read in terms of the need to keep a caring role (Cipolletta, 2013b).

The role of caregivers may be better understood within the family organization (Cipolletta et al., 2013c). Caregivers told us how family relationships changed after the emergence of the VS. The first period tends to be the most critical because each family member tried to deal with the situation in his or her own way. In some families, in particular couples, where the mother and father differ in their approach towards their child in a VS, distance and silence became the prevalent relationship pattern. Other family members, after the initial phase, instead restored harmony and perceived the family as a resource. They were primarily the children of VS patients who had their own families and did not centre their lives on the patient’s care. These caregivers felt better. Other resources were identified in activities that represented opportunities to go beyond a relationship of mere assistance.

Limitations

Three limitations are identified in this study. First, the limited geographic area where the study was conducted and the small number of the nursing homes. Second, the limited number of cases where the patient returned home that prevented us from exploring how caring experience changed in this condition. Third, we involved only the main family caregiver, thus failing to understand the experience of the other family members.

Conclusion

Family caregivers of VS patients arrest their personal and social lives to give voice to the living body of patients that cannot otherwise be expressed. Previous literature has shown that families demand that their dying loved ones should be kept alive at all costs (Cipolletta and Oprandi, 2014), but this does not apply when the ‘window of opportunity’ for treatment withdrawal decisions is closed (Kitzinger and Kitzinger, 2013). Most of our caregivers complain about life-sustaining treatments that lead the patients to live a condition that they would not want. We have not found an association between this opinion and the duration of VS, but this aspect might be further investigated. Also, the relationship between families’ opinions about treatment withdrawal and their beliefs about patients’ wishes and awareness might be further explored. We have found that those who wanted that the patients were kept alive also believed in their awareness. We have understood these caregivers’ need to keep the patient alive in relation to their need to maintain their caring role.

It would be interesting to further explore this caring role by comparing it to previous roles. This could be done by longitudinal or retrospective studies. Other specific measures might also be used in order to consider the caring role in relation to the caregiver’s distribution of dependencies, as done in a previous study of caregivers with different patients (Cipolletta et al., 2013d). Exploring on whom the caregiver depends leads to another research area directed to the study of the whole family. In future research, it would be interesting to involve not just one caregiver, but different members of the same family in order to understand how VS experience is inserted into the family structure. Finally, caregivers’ experience of VS patients in nursing homes might be compared to the experience of caregivers who care for patients at home.

Although caregivers readily provide care for their relatives, it often comes at significant cost in health, resources and lost opportunities. By reducing this cost, it is possible to strengthen the ability of the family to provide care, and it can be realized by increasing assistance and the financial support available to families (Thompson, 2004).

The results of our study suggest that VS caregivers need sufficient opportunities to tell of their experiences in order to accept the patient’s condition and reorganize their own lives. It might help caregivers cope with the situation, and in using resources not only to assist the patient but also to recover space for their own life and discover alternative possibilities in caring for patients. Offering psychological support is only one way to do this. Another way might be to engage caregivers in activities other than caring, thus allowing them to consider other aspects of their lives and also of their relationship with the patient. Health care professionals might support family caregivers both in the concrete management of the situation and, from a psychological point of view, by listening and being close to them. Understanding the experiences of family caregivers may be the first step in this direction.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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