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The formatter threw an exception while trying to deserialize the message: Error in deserializing body of request message for operation 'Translate'. The maximum string content length quota (30720) has been exceeded while reading XML data. This quota may be increased by changing the MaxStringContentLength property on the XmlDictionaryReaderQuotas object used when creating the XML reader. Line 2, position 32556. The formatter threw an exception while trying to deserialize the message: Error in deserializing body of request message for operation 'Translate'. The maximum string content length quota (30720) has been exceeded while reading XML data. This quota may be increased by changing the MaxStringContentLength property on the XmlDictionaryReaderQuotas object used when creating the XML reader. Line 1, position 32755. Research article Francine Ducharme12*, Marie-Jeanne Kergoat134, Ren?e Coulombe2, Louise L?vesque2, Pascal Antoine5 and Florence Pasquier6
Author Affiliations
1 Faculty of Nursing, Universit? de Montr?al, 2375 C?te Ste-Catherine, Montr?al H3T 1A8, Quebec, Canada
2 Research Centre, Institut universitaire de g?riatrie de Montr?al, 4565 Queen-Mary Road, Montreal H3W 1W5, Quebec, Canada
3 Specialized Medicine Department, Institut universitaire de g?riatrie de Montr?al, 4565 Queen-Mary Road, Montreal H3W 1W5, Quebec, Canada
4 Memory Clinic, Institut universitaire de g?riatrie de Montr?al, 4565 Queen-Mary Road, Montreal H3W 1W5, Quebec, Canada
5 Psychopathology and Health Psychology, Universit? de Lille 3, Lille, France
6 Centre National de r?f?rence pour les patients jeunes atteints de la maladie d’Alzheimer et maladies apparent?es, Universit? de Lille, Lille, France
The electronic version of this article is the complete one and can be found online at: http://www.biomedcentral.com/1472-6955/13/49
? 2014 Ducharme et al.; licensee BioMed Central.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Though advances in knowledge and diagnostics make it possible today to identify persons with early-onset dementia or a related cognitive disorder much sooner, little is known about the support needs of the family caregivers of these persons. The aim of this study was to document the unmet support needs of this specific group of caregivers. This knowledge is essential to open avenues for the development of innovative interventions and professional services tailored to their specific needs.
This study was conducted using a mixed research design. Participants were 32 family caregivers in their 50s recruited through memory clinics and Alzheimer Societies in Quebec (Canada). The Family Caregivers Support Agreement (FCSA) tool, based on a partnership approach between caregiver and assessor, was used to collect data in the course of a semi-structured interview, combined with open-ended questions.
The unmet support needs reported by nearly 70% of the caregivers were primarily of a psycho-educational nature. Caregivers wished primarily: (1) to receive more information on available help and financial resources; (2) to have their relatives feel valued as persons and to offer them stimulating activities adjusted to their residual abilities; (3) to reduce stress stemming from their caregiver role assumed at an early age and to have the chance to enjoy more time for themselves; and (4) to receive help at the right time and for the help to be tailored to their situation of caregiver of a young person.
Results show numerous unmet support needs, including some specific to this group of family caregivers. Use of the FCSA tool allowed accurately assessing the needs that emerged from mutual exchanges. Avenues for professional innovative interventions are proposed.
Caregivers; Early-onset dementia; Unmet support needs; Partnership approach; Professional interventions
It has been well documented that the onset of dementia in persons 65 years old or over constitutes a particularly painful event for both the sufferers and their family caregivers. However, much less is known about the repercussions on the families of young persons with the disease [1],[2], even though advances in knowledge and diagnostics now allow identifying much sooner cases of early-onset dementia, that is, those involving persons under 65 years of age [3]. The fact that little research has been conducted on early-onset dementia has been attributed in part to the fact that dementia is associated with old age [4] and that it is difficult for young persons and their families, as well as for healthcare professionals, to envisage this disease occurring at a young age.
The most common types of early-onset dementia are Alzheimer’s disease, which is often associated with a genetic etiology, followed by frontotemporal degeneration [5]. However, what often sets these types of dementia apart from late-onset types is the saliency of behavioural, praxic, executive and language problems over memory loss [1],[6]. Moreover, the delay between the appearance of the first signs of dementia and diagnosis has been found to be longer for early-onset forms, particularly on account of lay representations that associate dementia with old age [7].
The context of early-onset dementia, too, is very particular. It is often characterized by spouses in their 50s, with children at home, and at the height of their working life [5]. Their marital life is upset by the advent of dementia at a time when such an occurrence is supposed to be highly unlikely [1]. The cognitive impairments of the sufferer and the person’s diminished ability to perform daily tasks lead to a growing dependence that forces people to redefine their spousal identity and relationship. Interpersonal relationships are necessarily restructured as the cared-for person becomes more and more dependent on family to meet his or her needs. This restructuring is extremely demanding the less reciprocal the relationships become [1],[8]. Moreover, the caregivers of younger sufferers report higher levels of burden and stress than do the caregivers of older sufferers [1],[9],[10]. Lastly, it has been reported [11] that couples often face financial difficulties stemming from loss or reduction of employment.
Among the very few studies to examine the lived experience of caregivers of younger sufferers, the one by Ducharme and colleagues [12] allowed documenting that the daily reality of spouse family caregivers was marked primarily by the following: long quest for diagnosis; denial of diagnosis and non-disclosure to others; difficulty managing behavioural and psychological symptoms; grief over loss of spouse, married life and midlife projects; difficulties associated with assuming caregiver role prematurely and juggling this with other roles; and difficulties planning for the future.
In light of the growth in diagnosed cases of Alzheimer’s or related dementias at an increasingly younger age, healthcare professionals, particularly nurses working in primary care or in cognition clinics, are more frequently in contact with families living with this situation. In this regard, it has been demonstrated that healthcare professionals know little about the support needs of this particular group of caregivers and, consequently, are at a loss how to help them and improve their quality of life [13]. These observations bring to the fore the necessity of documenting the support needs of these caregivers who, to our knowledge, have not been a specific focus of research to date. This is all the more important in that, according to the caregiving models developed by Pearlin, Mullan, Semple, and Skaff [14] and by Schulz and colleagues [15], informal and formal support could have a direct or a mediating effect on caregiver well-being.
Against this background, we undertook a study to document the unmet needs for support of early-onset dementia caregivers in the aim of opening avenues for the development of nursing interventions and professional services tailored to their needs.
The study was based on a partnership approach with participating caregivers. Such partnerships rest on meaningful, non-prescriptive dialogue respectful of the viewpoints of all stakeholders [16],[17]. In this context, interactive exchanges allow partners to be considered co-experts [17]-[19]. In our study, the family caregivers–the leading actors in their daily reality–were thus considered experts of their own support needs.
The relevance of working in partnership has been recognized in various health disciplines. In nursing, in particular, authors feel partnership based on an alliance with service users to be at the very heart of the discipline [20]-[22]. Furthermore, this type of approach is believed to foster empowerment by recognizing the ability of the actors to identify their own needs [19],[20]. This was the approach chosen to investigate the support needs of family caregivers of younger persons with Alzheimer’s or a related dementia.
We used a mixed research design combining a quantitative and a qualitative approach to document the unmet support needs of family caregivers in partnership with them.
Family caregivers were recruited via fifteen sites, mostly memory clinics and Alzheimer Societies in Quebec, Canada. Participants were the spouse or an offspring self-defined as the person principally responsible (notion of primary caregiver) for a person diagnosed with Alzheimer’s or a related dementia before age 65 by a neurologist, psychiatrist or geriatrician.
A designated professional was mandated in each clinical facility to contact potential participants. If these persons gave their consent, the professional forwarded their contact information to the project coordinator. The coordinator then called them to explain the project and solicit their participation. In all, 32 caregivers took part in the study. This number was determined by data saturation, that is, by thematic redundancy in caregiver perception of their unmet support needs [23].
The Family Caregivers Support Agreement (FCSA) tool was used to document the support needs of caregivers. This tool, as its name suggests, is consistent with our frame of reference and a partnership approach. The FCSA tool derives from the validation, in the Canadian context, of the Carer’s Outcomes Agreement Tool (COAT) developed by British and Swedish nurse researchers and presently implemented in various Swedish settings [24]. The COAT is an innovative tool developed using a constructivist approach with the participation of caregivers, practitioners, and community groups [25] who, together, identified the support needs deemed essential to meet in order to improve caregiver quality of life.
Given the possible cultural differences not only in terms of language but also in how certain concepts are understood, the FCSA tool was subjected to a transcultural validation in order to adapt the original version of the COAT to the Canadian context [26],[27]. This validation was conducted with English- and French-speaking family caregivers and healthcare providers working in homecare services [26]. Then, an ecological validation [28] was carried out by field-testing the tool with the participation of practitioners and caregivers and subsequently holding focus groups and individual interviews in order to refine and tailor the instrument [29].
Like the original COAT, the FCSA tool covers four dimensions. The first, helping you care for your relative (13 items), takes account of the different types of information and help that could be useful for the purpose of caring for the sick relative (e.g., information on available help and services). For each type of information and help presented, respondents indicate whether it would be useful for them, whether it is already being received, or whether the need does not apply to their situation. The second and third dimensions concern, respectively, help to make life better for the sick relative (8 items) and for the caregiver (9 items). The response scale allows respondents to indicate whether the proposed help would make life better for the relative or for them, whether it is already being received, or whether it does not apply to their situation. Each of these three dimensions is followed by open-ended questions asking respondents to make comments, identify other needs not covered by the tool, and identify other types of help that would be useful. As for the fourth and last dimension, getting quality help (8 items), it regards quality criteria that caregivers deem important to respect when it comes to help offered by services. Caregivers indicate whether the help and services they receive meet their expectations in terms of quality or whether they should be improved. Finally, an open-ended question completes this discussion, in which caregivers are asked to indicate whether other aspects of services could be improved. For caregivers presently receiving no services, the open-ended question was the following: “What do you expect of the help you wish to receive in terms of quality?”
Ethics approval has been obtained from the Research Ethics Board of the Institut universitaire de g?riatrie de Montr?al (# 10-11-018). The Board’s mandate is to ensure that consent from research participants is obtained in compliance with the ethical standards stipulated by the Quebec government and Canada’s major funding agencies.
Data were collected through interviews with the family caregivers. At the start of the interview, participants had to sign a consent form. The interviews to complete the FCSA tool, which lasted 90 minutes on average, took place face to face with an interviewer trained by the research team on conducting qualitative interviews. The interviews were held at home, at the research centre or at the offices of a local Alzheimer Society, at the participant’s discretion. The interviews were digitally recorded.
Descriptive statistics (means, standard deviations, and percentages) were calculated to draw a profile of the participants. In order to identify unmet needs, we ascertained the number and percentage of caregivers who reported an unmet need under each of the four dimensions covered by the FCSA tool. More specifically, the aim was to ascertain the number of caregivers who indicated needing more information or help in connection with caring for their sick relative, as well as the number of those who mentioned a need that could be met in order to make life better for their relative or for them. We also took account of the number of caregivers who wished to see services improved.
The responses given to the open-ended questions in each interview were transcribed verbatim. The data were subjected to a thematic content analysis based on the interactive data analysis model proposed by Miles and Huberman [30]. According to this model, data collection and data analysis activities constitute a continuous, interactive process that is complete upon achievement of data saturation. The content analysis was carried out by two members of the research team who independently read the transcripts of the first eight interviews. They then developed a coding scheme, flagging the statements deemed relevant to the main themes of the open-ended questions. Then, the two researchers carried out an inter-subjective validation by consensus of the coding scheme, which was used thereafter to conduct the thematic content analysis of the data subsequently collected.
As shown in Table 1, the caregivers were mostly women (75%). Their mean age was 54.28 years (SD?=?10.58) and their average number of years of schooling was 14 (SD?=?3.31). The male caregivers were older (X?=?57.13 years, SD?=?8.79) than their female counterparts (X?=?53.33 years, SD?=?11.12). The caregivers were mainly the spouse (78%) of the person cared for. Some (28%) had children at home, more than half of which were less than 18 years old. Eighteen of the caregivers (56%) were gainfully employed, of which two-thirds (n =12) full-time. To help them deal with their work situation, these caregivers received respite services. In some cases, the cared-for relative was still able to stay alone during the day. Of the unemployed caregivers, 10/14 wished to continue working full-time, to work more, or to return to work.
Table 1.Sociodemographic and descriptive characteristics of caregivers (N =32)
The diagnosis of dementia (60% Alzheimer-type dementia and 25% frontotemporal degeneration) had been disclosed on average 36 months earlier (SD?=?33.7). However, according to the caregivers, signs and symptoms had appeared long before, on average 69 months prior to diagnosis (SD?=?40.9), which is to say nearly 10 years earlier. The caregivers provided on average nearly 84 hours a week (SD?=?61.4) of support, help and care to their relative. Twenty-four participants (75%) received services, including for housework, personal and nursing care, and respite. Given the caregivers’ young age, respite made it possible for them primarily to continue working.
The results of the FCAS tool regarding the unmet support needs of family caregivers are presented according to the four dimensions covered by the tool and to the corresponding open-ended questions, and are illustrated through transcript excerpts. Tables 2 and 3 give the principal results.
Table 2.Unmet support needs according to FCSA tool (N ? =?32)
Table 3.Unmet needs regarding quality of help received (N ? =?24)
More than 70% of the caregivers would have liked to receive more information on the type of help and financial assistance available and how to get it (Table 2). For 41% of them, it would have been useful, also, to have more information on their relative’s disease and its treatment, ways to adapt their home to provide care, and persons to contact in case of emergency:
“I find that not enough is done to publicize the services offered… We learn about them bit by bit! A complete list or directory of the resources in the region should be drawn up and distributed… It’s always up to us to dig things up, to scour the internet…” (Caregiver (CG) #30).
They also would have liked information to help the family understand this disease that occurred at such an early age and to know how to disclose the diagnosis and its consequences to the immediate and extended family. The question of heredity, in particular, was often raised:
“… give the extended family some info. My husband has two brothers. They’re afraid of this disease. Is it genetic? Hereditary?” (CG #32).
In terms of help needed, caregivers would have liked more support from their family network (63%) and training in the skills needed to provide care (59%):
“It’s hard for family and friends to realize that when I come home after dealing with problems all day at work, all I do is deal with more problems… I have no one to confide in anymore … no tenderness… no support … I’m lonely! … and all they (family and in-laws) have to say to me is ‘take care of yourself’…” (CG #26).
Respondents (50%) reported needing more help to talk openly about their caregiving situation with their family and other caregivers, and about alternatives to homecare. The caregivers confided more precisely that they would have liked to receive help from the extended family rather than from their children, as the latter had “their life to live”.
Interestingly, fewer respondents, about one-third of them, indicated needing more help with the physical care of their relative (Table 2).
Five of the eight needs under this dimension were reported as unmet by half of the respondents or more (Table 2). More precisely, nearly 70% of the caregivers reported that being valued as a person and having more stimulating activities would make life better for their relative:
“…stimulating, fun activities to pass the time, that’s what’s missing so much …anything, outings just to get out of the house, picnics… Places for old folks, it’s not for him!” (CG #13).
Other needs, too, were just as important to meet for the sake of the relative, such as having more contact with the social network, especially friends (reported by 63% of the caregivers), having a sympathetic ear to talk to (50%), and continuing to live at home (41%):
“Someone to keep her company: that’s a big need! It would reassure me to know that my wife is not alone and that she has someone to interact with. Someone to stay with her at home and to engage her in stimulating activities…” (CG #10).
One of the major unmet needs under this dimension was receiving support to reduce stress (75% of the caregivers):
“How much further will I be able to go…? My husband moves around all over the place all day long, he touches everything, he can’t eat alone, he often chokes on his food…” (CG #13).
“You forget to take care of yourself when you’re a caregiver. You’re in it up to your neck, you’re completely consumed by the disease. That’s a mistake [forgetting to take care of yourself]” (CG #2).
This need to reduce stress was directly related to other caregivers’needs, namely, to take a vacation and to set limits as caregivers (59%). Having more free time for oneself (69%), also, was reported by the vast majority of the family caregivers. Finally, given their age, some caregivers had to deal not only with their sick spouse but also with aging parents with diminished autonomy, a situation that entailed particular needs:
“A lady to keep my mother, who has Alzheimer’s, company would leave me more time for my sick husband…” (CG #32).
This last dimension covered by the FCSA tool allowed documenting whether help and support currently received by the caregivers could be improved. As shown in Table 3, 75% of the caregivers received help and the most important improvement had to do with timeliness, that is, getting help in a timely fashion (38% of caregivers).
“The waiting lists are long…. You get help but it’s rationed. You’re never sure of anything!” (CG #4).
“The community centre has 51 families waiting for services in our area. I feel fortunate for the help I get [30 min/week] when I think about that” (CG #28).
“People in their 50s are a band apart. My own aging parents get better services than we do [caregiver and care recipient]” (CG #9).
Moreover, one-quarter of the respondents underscored the importance of respecting their routines related to caring activities, having care provided by the same person or by someone known and trusted by the caregiver, and having an agreement between the caregiver, the person cared-for and the service provider regarding the type of care to offer.
As for the caregivers who had yet to receive any help (25%), the qualitative data showed that they were in one of the following four situation: a) at the very start of the help trajectory and did not manifest the need for help; b) on a waiting list for requested help on account of limited service availability; c) they requested no help on account of caregiver or care-recipient denial of the disease; or d) they were reluctant to request any help outside their informal support network.
Overall, the results allowed us to observe the presence of numerous unmet support needs under each of the dimensions covered by the FCSA tool in this specific group of family caregivers of younger persons with Alzheimer’s or a related dementia. In sum, four unmet support needs were reported by 70% or more of the caregivers. Two of these needs had to do with information concerning the type of help available, including financial assistance, and how to get it. One need regarded the relative’s quality of life, that is, to be valued as a person (ensuring his/her dignity) and another, the caregiver’s quality of life (to be able to reduce stress). Ultimately, 16 of 30 needs covered by the tool were unmet according to the perception of 50% of the caregivers.
In the next section, we discuss these results and propose interventions to improve the fit between these needs and services offered.
The aim of this study was to document unmet support needs among early-onset dementia family caregivers. To this end, we used a mixed research design and a partnership approach. Results evidenced that these caregivers, who for the most part were spouses in their 50s often with children at home, have numerous needs for support.
As mentioned above, aside from the fourth dimension regarding quality of help received, 16 of the 30 needs investigated under the first three dimensions covered by the FCSA tool were unmet in 50% or more of the caregivers. Of these needs, six were particularly prevalent, as they encompassed 69% or more of the respondents. It is not surprising that two of these prominent needs (need for more information on available help and financial resources) arose in numerous caregivers given the large number of hours of care per week (84 on average) that the caregivers offered their sick relative and the fact that many of the caregivers had to quit their gainful employment or cut their hours of work. Two other needs that emerged from our analysis concerned the relative’s quality of life. In the face of the very nature of the disease, the caregivers observed that making their relatives feel valued as persons and providing them with a greater number of stimulating activities would contribute to their well-being. Preserving the abilities of these young people is essential to maintaining their self-esteem, dignity and sense of usefulness. Oftentimes, young persons are fine physically and could put their residual abilities to good use in the context of activities better adapted to their age.
Regarding quality of life, a large number of caregivers would have liked to reduce the stress related to their role and enjoy more time for leisure activities. The caregivers interviewed are young, have full family, social and professional lives and, to top things off, must assume a caregiver role at an early age and grieve the losses associated with this situation, including the sudden change in their marital life. From the viewpoint of the theoretical model of caregiving developed by Pearlin and colleagues [14], the experience of caregivers can be explained by the fact that they are exposed to multiple stressors. Some of these are part of their daily life, notably: relational deprivation (e.g., being less able to confide in his/her relative), family conflicts (e.g., disagreement between caregiver and family members about the cared-for person’s disability and its seriousness), and work-caregiving conflicts (e.g., dilemmas and pressure stemming from demands of caregiving and employment). Role captivity is another source of stress under Pearlin’s model. This arises when caregivers feel chained to their caregiving responsibilies in the face of activities they must forego. Also. given their caregiving experience, it is not surprising that, besides wishing to live with less stress and to have more time for social activities, caregivers would like, in particular, to receive more help with how to talk openly with family and other caregivers about their caregiving situation and how to set their limits as caregivers.
It is interesting to note that in addition to being numerous, the participants’ needs are primarily psycho-educational needs rather than instrumental needs. The dominance of these needs can be explained easily if we consider that early-onset dementia family caregivers experience difficulties above all of a psychological nature, as reported in an earlier study [12]. The primacy of psycho-educational needs reflects the comprehensiveness and complexity of the caregiver role. This role goes far beyond the instrumentality associated with accomplishing care tasks. These tasks constitute only the tangible aspect of the caregiver role. There are also other aspects of caregiving that are much less visible. These, commonly referred to as its intangible aspects [31], lie at the heart of a relational process involving the caregiver, the sufferer, and the family. Indeed, caregiving by its very essence takes place within a relational process that cannot be divorced from the relational history of these partners in care. The intangible aspects include, in particular, what caregivers do to maintain a satisfactory relationship with their spouse or partner and to cope with the difficult emotions they feel every day. From this perspective, it would be more appropriate to say that the caregiver role consists of taking care rather than providing care. It is important to underline that our study revealed a lack of support in connection with the intangible aspects of care.
The last dimension that we investigated among caregivers concerned quality of services. Our results showed that caregivers who received help in the course of their trajectory were generally grateful for the services received even though they were not always delivered in a timely fashion. This situation can be explained, in part, by the long delay in obtaining a diagnosis and by the difficulty finding available resources in general, but also resources tailored to the specific needs of this group of younger family caregivers who are on a different schedule and at times still hold a job. In short, it seems that, once a diagnosis is established, the wait time to receive help is inadequate. The participants pointed out also that the support offered is not specific to their condition as evidenced by the striking comment by one participant to the effect that support was more easily available for caregivers of older persons than for those of persons in their 50s.
The results demonstrate, also, the relevance of assessing unmet needs for support in partnership with caregivers. Indeed, the caregivers expressed, within the context of our assessment, the wish that help be offered following discussions with service providers. These young caregivers belong to a generation in which most know that they have the right to take part in the decisions concerning the care and services that they should have access to. A partnership approach allows them to be heard, to feel empowered by obtaining recognition of the abilities they acquire day by day providing care, and to be considered co-experts capable of taking an active part in the assessment of their needs. According to a study conducted by Raivio and colleagues [32], nearly 69% of the dementia family caregivers in their study reported having no say in the services that they were offered, a result supporting the importance for their voices to be heard. The use of an instrument such as the FCSA tool, which is based on a partnership approach, proved fruitful if not indispensable for documenting the support needs of caregivers accurately and for gaining a better understanding of what it means to be an early-onset dementia caregiver.
Further, although this study was undertaken with a small number of participants, the fact remains that data saturation was achieved. What’s more, the observations made can already orient healthcare professionals, especially nurses, in their role with these caregivers of young dementia sufferers. In the present context where the primary determinant of the healthcare services available and offered is the state of health of the sufferer [33], it is essential that the needs of caregivers also be taken into account so that services target not only persons with a disease but also the caregiver-care-recipient dyad.
Like all other healthcare professionals, nurses have to be alert to the possibility that a young person can suffer from dementia and that such an event can constitute a crisis situation affecting the entire family system. Needless to say that one of the first measures to consider is suggesting to caregivers that they seek a physician’s diagnosis sooner rather than attributing a relative’s early signs and symptoms of disturbed behaviour to burnout or depression. This will avoid an overly long delay in obtaining a diagnosis of early-onset dementia.
Once a diagnosis is established, primary-care nurses have a key role to play in the systematic assessment of the support needs of this group of caregivers, a process that can contribute to reduce their uncertainty and, as mentioned earlier, their feeling of powerlessness [12]. In this regard, the FCSA is a tool with application potential in clinical practice, as the mutual agreement that underpins the instrument improves the chances of achieving a better fit between needs and support offered [15],[34].
Also, despite the scarcity of resources for these family caregivers of young persons, it is imperative that they be made aware of those that exist and are available to them, such as respite services, daycare centres, Alzheimer Society services, and support groups. Though these younger caregivers generally have the capacity to seek the information that they need on the web, facilitating their access to this information or filtering it could be helpful in light of their busy schedules and the knowledge that they sometimes lack to be able to assess the quality of this information, particularly when it is of the medical sort.
Above all, innovative forms of support designed specifically for young-onset dementia caregivers are needed. In this regard, some interventions have been proposed in the literature in recent years that could allow meeting several of the needs identified in this study. These include assigning a nurse case manager to assess specific caregiver support needs at time of diagnostic disclosure and to ensure follow-up of the caregiver-care-recipient dyad across their care trajectory [35]. Also, opening a clinical file for caregivers would allow considering them as clients of healthcare services and recognizing the health risks associated with their role [13]. Moreover, various modalities (i.e., at home, by telephone, or online) of psycho-educational interventions to reduce stress [36] have been put forth, as have systemic family interventions [37]. New forms of respite, too, have been suggested to meet the needs of caregivers in the workforce who often still have children at home [36]. However, “real respite” and time allocated specifically to caregivers are just as essential for preserving their psychological and social health. In addition, daycare centres should be redesigned to offer stimulating activities in line with the residual abilities of young sufferers [13]. Given the possibility of diagnosing dementia sooner nowadays, emphasis should be placed on stimulating persons diagnosed with the disease. In light of how the illness evolves, it is important, also, to ensure a smooth transition in the services offered these persons and their caregivers. Young people could take part in support groups specifically designed for them in the early stages of the illness. Support groups could also be organized for caregivers of like age going through similar situations.
This study revealed that many early-onset dementia caregivers had unmet support needs and required psycho-educational interventions to help them cope with the intangible aspects of their caregiver role, particularly changes in their marital, family and professional lives. Aside from wanting to be heard, these caregivers underscored the importance of receiving support in a timely fashion, taking account of their specific needs across their singular, less documented trajectory. In sum, as actors of their own reality wanting to take part in the decisions concerning them, the caregivers clearly recommended avoiding the “one-size-fits-all” approach to intervention and instead developing interventions tailored to their needs. Members of interprofessional teams who work with these family caregivers would stand to benefit from hearing them out knowing that in the absence of such a fit, caregivers are likely to perceive services as irrelevant and either reject them or accept them reluctantly and thus dampen their potential benefits [17].
The authors declare that they have no competing interests.
FD conceptualized the original project, supervised data collection and data analysis, drafted the manuscript, and finalized the paper. M-JK participated in the conceptualization of the original project and contributed to data collection and manuscript revision. RC coordinated recruitment and data collection, and contributed to data analysis and manuscript revision. LL participated in the various drafts of the content of the manuscript and its final critical revision. PA conceptualized the original project and revised the draft of the manuscript. FP conceptualized the original project. All authors read and approved the final manuscript.
We would like to thank the caregivers who participated in the study and the professionals in the clinical facilities who were mandated to contact potential participants. The study would not have been possible without them.
Project funded by Fonds de recherche du Qu?bec-Sant? (FRQS), Canadian Institutes of Health Research (Canada), and Agence nationale de recherche (France).
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Educational initiatives for informal caregivers have proved efficient at reducing some of their symptoms, consequence of their involvement in care giving. However, more progress must be made in terms of the design of more successful interventions. Aims: Randomized clinical trial to test the efficiency of an Education Program for Primary Informal Caregivers of Hospitalized Dependent Patients in relation to their burden, mental and physical health, and care related knowledge.
Design: Cluster Randomized Trial. Sample: 151 participants, primary caregivers of hospitalized, dependent patients, carried out from February 2009 to March 2010. They were assigned at random to two groups: one received an intensive educational program (n?=?78), and the other just a generic speech (n?=?73). The degree of burden of caregivers was recorded (Zarit Test), as well as their physical and mental health (SF12) and their knowledge of caregiving, before, immediately, after and one and a half months after the intervention. These analyses were carried out according to the Generalized Estimated Equations Method, in order to assess any possible improvements.
Participants? burden did not improve, as measured by Zarit Test (p?=?0,338), nor did their physical (p?=?0,917) or mental health (p?=?0,345). However there was an improvement in their hygiene caregiving (p?=?0,001) and mobility care giving (p?=?0,001).
Caregivers found useful the education program, providing them with an informal support group. Interventions need to be longer and more customized as well as adapted to specific demands. There is a lack of validated questionnaires to assess improvements in care knowledge. There is a need to develop programs that contemplate continuity of care from primary to specialized caregiving.
Cluster randomized trial: ESCPD2010 webcite
Health education; Care givers; Continuity of care; Dependent patients; Quality of life
Sociodemographic changes in Spain are causing a growth in dependent population. Over 65 and over 80 population has doubled in the last 30 and 20 years respectively [1],[2]. Moreover, we must take into consideration dependence caused by other circumstances [1].
Despite institutional aid and other support services, large numbers of family members still provide care to dependent patients, mainly at home, where the main aspects of vital needs care takes place [3],[4]. Personalized care to dependent patients is generally carried out by primary or informal caregivers [5],[6], largely female (83,6%), and normally daughters/sons (57,2%) [7].
In this group of primary caregivers, depression, anxiety and stress are common problems, as well as lumbago, arthritis and hypertension, with consequences on the social and family spheres [8],[9]. Institutional, professional, social and family support, as well as efficient coping strategies, can reduce these adverse effects [10].
In the context of specialized nursing, with the aim of providing training and support to caregivers and minimizing the negative impact of long-term caregiving, a number of interventions and support programs are being implemented [4].
Emotional and Education interventions aim to give people a chance to express fears, improve their caregiving skills and find other forms of support, while hoping to avoid caregivers? burden and the potential institutionalization as a consequence [5].
However, it has been difficult to determine the degree of efficiency of such educational programs for primary caregivers, due to differences in methodology and content: these programs have been implemented by various support services and aid groups, with very different aims, contents and forms of action. Meta-analyses and systematic assessments carried out since the late 80s have been evolving: after an early period of serious doubts in terms of efficiency [11], a series of meta-analyses [12]-[14] began showing moderate positive effects in various dimensions, such as degree of burden, depression, subjective wellbeing, satisfaction with care, skills and knowledge.
It is still unclear which interventions are most effective for which informal caregivers. Our project intends to cast light into this area, increasing our knowledge of the efficiency of educational interventions.
The aim was to assess whether nursing interventions based on Health Educational Programs for primary informal caregivers of dependent patients may improve their quality of life, decrease emotional burden and increase caregiving knowledge, in order to better meet patients’ basic needs.
Cluster Randomized trial, carried out between February 2009 and March 2010, at Hospital Ram?n y Cajal (Madrid), integrated in the Spanish national hospital network.
Primary informal caregivers of dependent patients, admitted in 30 hospital units, with expected hospital stays of at least one week. A dependent patient is understood to require the aid of someone else in order to carry out basic daily activities.
Exclusion criteria: caregivers with cognitive deficits that could be an obstacle for adequate verbal understanding, illiteracy, persons taking part in other clinical trials or who had taken part in similar workshops in the previous two years, as well as health professionals.
Sample calculations were carried out, in order to detect average differences of 5 points in the SF-12 mental health scale between the groups. For this purpose, with a DS?=?10, a confidence level of 95% bilateral, power of 80% and an assessment of losses of 10%, 71 patients were required per branch. Being a clusters study, this figure needed to be multiplied by the Inflation Factor (IF). In this case, starting from an ICC?=?0.01 (obtained from scientific literature) [15], and from an average cluster size of 4.3 (average of participants during pilot study, one month previous to actual study):
Thus, the size of each of the groups (intervention and control) needed to be of:
Quality of life assessed through SF12 questionnaire, both mental and physical health scales; response format were Likert scales of 3 or 5 points, to assess the intensity or frequency depending on the item. Test scores were obtained using algorithms developed by the authors, scores being normalized to a scale of 0 to 100, with 50 as the average scale of the normal population. It was a reduced SF36 questionnaire. The prediction capability of the SF36 results was a R2 of 0.911 and 0.918, for the Physical and Mental Health Scales respectively. The test-retest reliability after 2 weeks showed Pearson Coefficients of 0.89 for the Physical Health Scale and 0.76 for the Mental Health Scale [16]. In terms of relative validity, coefficients for the physical scale were 0.43 to 0.93 (average?=?0.67) and for the mental scale 0.60 to 1.07 (average?=?0.97). In terms of the reliability and validity of the Spanish version of the SF36, joint estimates obtained from meta-analyses [17] of ? coefficients of Cronbach were???0.9 for the scales Physical function, Physical role and Emotional role, and the joint estimates of the rest of the scales were all above 0.7. In terms of the validity of the construct, it showed a correlation with the General Health Questionnaire (GHQ) [18], and the St. George’s Respiratory Questionnaire (SGRQ) [19].
Caregiver?s burden assessed through Zarit?s Test, consisting of 22 items, responded according to Likert scale of 5 points. Scores result from adding the points obtained from all responses. In Spain two cutoff points have been established, one between “no burden” and “burden”; between 46 and 47 points; with an 84.4% specificity and 85.1% sensibility. The other, between “mild burden” and “severe burden”; between 55 and 56 points; with a 89.7% sensibility and 94.2% specificity; an internal consistency of Cronbach alfa coefficient of 0.91%; and a test-retest reliability after 3 months of Pearson coefficient of 0.86 [20].
Caregiving knowledge before and after the intervention, assessed through a self-designed questionnaire consisting of 5 items: feeding, elimination, mobility, hygiene and emotional self-care, with a response scale (Likert type) of 5 points. Global and specific knowledge of each item were analyzed. It showed an internal consistency Crombach alpha of 0,889.
Patient degree of dependency, assessed through Katz Index, which has shown a good intra-observer reproducibility in all studies [21]-[23]. Correlation coefficients (r) between 0.73 and 0.988, with an adequate content and construct validity. It was used as gold standard to compare new functional assessment indexes [21],[23].
Socio-economic variables: both patient and caregiver age and gender, caregiver relation to the patient, educational level, work status, caregiving time, number of persons receiving care, primary or only caregiver, and hospitalized patient?s pathology.
The intervention in the experimental group was an intensive educational program, organised and structured, which included two training sessions, taught consecutively on a weekly basis. Each session lasted 3 hours and was theoretical and practical in nature. The methodology involved active and dynamic participation. Caregivers had the opportunity to acquire a wide range of valuable knowledge through practice. The caregiver was trained in the skills necessary to carry out basic daily activities, in response to group demands, while encouraging emotional relief and offering emotional support through active listening.
The session started with the introduction of each participant stating their situation and particular needs. Then the training program would begin, divided in 5 areas but focusing on the specific demands of each group:
Feeding: nutritional advice, adequate food handling, importance of adequate hydration and device handling.
Disposal: constipation and diarrhea, signs of alarm, handling of nappies, devices, urinary catheters.
Mobility: position change, prevention of falls, relation between bed rest and skin injuries, incorporation, aided mobilizations, ergonomics to prevent injuries in caregiver.
Hygiene: bed rest, nails, head, mouth, creases and probes, relation to the prevention of skin injuries.
Emotional self-care: removing culpability, emotional expression, time management, asking for help, social networks and search for support.
This training was complemented with an educational dossier, which was handed over to each participant, and which was published by a social foundation, with exhaustive information on the contents of the workshops [24].
The control group (GC) in turn received a single 2 hours session, which was also taught on a weekly basis, on generic life and aging processes.
Participants were all primary caregivers of hospitalized dependent patients, sharing rooms and public spaces during their stay. Therefore, it was necessary to guarantee that experimental and control group participants would not meet. In order to avoid participants? contamination, randomization was stratified by hospitalization units.
Randomization sequencing was carried out using Epidata computer program. A person external to the study generates two sequences, one for the type of intervention and the other for the units in which it would be recruited every week. She then handed them over to the study team in closed, numbered envelops, each had to be opened in the sequential order of the week.
The study was approved by the hospital Research Ethics Committee, “Research Ethics Committee Hospital Ram?n y Cajal”.
The lead investigator was the only person in charge of safeguarding and opening the envelops. Once she had found out the units where recruitment would take place, she informed the team in charge, who ignored to which group patients were being assigned: this team, formed by two persons, then proceeded to the selected units, where it was decided, together with the unit nursing team, which patients satisfied inclusion criteria. Caregivers were then offered to take part in information sessions for patients? family members, and they were handed over written information on the study, as well as informed consent approved by the hospital Ethics Committee. Once they agreed to participate they were handed over the questionnaires referred above. The nurse would then complete the Katz Index of the hospitalized patient.
When the recruitment process was over, one day before the first session, the envelop with the type of intervention, either experimental or control, was opened in order to inform the team responsible for carrying it out. The day of the intervention a member of the team who had not taken part in the recruitment process, located the participants and led them to the class room.
Three to 4 days after the intervention and before their discharge, they would again complete the SF12, the Zarit?s Questionnaire and the skills knowledge questionnaire.
Finally, one month later and back home, they were requested to respond again, through postal mail, to the SF12 and Zarit?s Questionnaire, and the Katz Index of the patient was assessed one again through the phone.
Data analysis was conducted with SPSS 15.0 for descriptive and correlation analyses, and with STATA for multivariate causal analyses. All analyses were conducted assuming a confidence level of 95%.
Descriptive analysis began by testing the normality of scores with Kolmogorov-Smirnov Test, and inter-group homogeneity with Chi Squared Test. Standard deviation and average of the variables that met the normality criteria were calculated. Otherwise the choice was the interquartile range and the median. In turn, nominal variables were analyzed by frequency and percentage.
Once the descriptive analysis was finished, the correlation analysis was conducted. Different tests were used for this purpose, depending on the characteristics of the variables. For two continuous variables Pearson Correlation was used, as long as both satisfied normality criteria. Otherwise it was Spearman correlation. For nominal variables, Chi squared test was used. Finally, correlations between nominal and continuous variables were analysed using two different tests depending on the characteristics of the nominal variable: if it included more than two categories the choice was ANOVA test; if dichotomic, Student?s T test for average comparisons.
Multivariate causal analysis was conducted in order to find out whether the intervention had modified the caregiver?s quality of life (mental and physical SF12 scales), burden (Zarit’s Burden Index) or caregiving knowledge (self-designed questionnaire). Since the randomization was conducted through hospitalization units and not individuals, it was mandatory to analyze each week’s education group as a unit, and therefore to carry out a cluster analysis where each cluster corresponded to each week’s education group. For this purpose the Generalized Estimated Equations technique available in STATA statistical package was employed.
A maximum model was designed which included the variables that had shown the greatest correlation with the dependent variables: type of intervention, Katz Index, Relation with the Patient, Caregiver Gender, Caregiver Age, Caregiving Time, Family Loads and Educational Level. To this model was added, for each particular case, the results of the dependent variable before the intervention, up to a total of 9 variables.
Once the maximum model was defined, nominal variables of more than two categories (Caregiving Time and Educational Level) were transformed into binomial variables in order to improve the reliability of results, since GEE?s analysis better functions as the number of empty or small size responses decreases.
After the multinomial analysis an Intention to Treat Analysis (ITA) for lost values was conducted, as recommended by CONSORT protocol [25] for Randomized Clinical Tests. Among the various existing criteria for value assignment, we choose to assume the worst possible scenario, since it is the most extensively used [26],[27]. In this strategy, the control group lost values are substituted by the experimental group best score, and the experimental group lost values by the control group worst score.
Here is the research's participant flow (Figure 1).
Figure 1.Randomization and Participant Flow.
151 participants were recruited. Kolmogorov-Smirnov test certified that variables were normally distributed, except for participants? age. It was subsequently certified that there was no significant differences between the experimental and the control group.
Patients were of old age (average 80 years old, 71–86), with a similar gender distribution, 80 women (53%), with heterogeneous pathologies. Most came from Internal Medicine Units (n?=?60, 40%), with a severe dependency, (n?=?126, 83.4%), and most were dependent before being hospitalized (n?=?96, 63.6%, Table 1).
Caregivers, in turn, were mostly women (n?=?121, 80%). Average age was around 50 (53.8, D.T. 15.3). Most caregivers were sons/daughters (n?=?55, 36.4%) and partners (n?=?37, 24.5%). 45.7% were unemployed. 45% had been caregiving their family member for over one year (Table 2). Table 3 shows characteristics per cluster and Table 4 shows the dependet variables results.
Table 3.Characteristics of patients and caregivers per cluster
78 participants began the study in the intervention group and 73 in the control group. In the experimental group there were 18 losses due to death, 2 due to institutionalization and 3 abandonments, so the analysis was conducted on 55 cases (55/78). In the control group there were 20 deaths, 4 institutionalizations and 9 abandonments, so the analysis sample was conducted on 40 cases (40/73).
Next the multinomial analysis was conducted (Table 5). The evolution from before the intervention to immediately after (instants 0 and 1) contradicted our hypothesis for physical health: it worsened in the intervention group and slightly improved in the control group, showing a statistically significant development, only negative (coefficient ?2.46, p?=?0.009). In the other dimensions there was no significant change, not for the Mental Health Index (p?=?0.589), nor for Zarit Burden (p?= 0.281). Results were similar after conducting a univariate analysis considering just the type of intervention: the effect on Physical Health was ?2.77 (p?=?0.003) and there was no significant effect on Mental Health nor on Zarit Burden (p?=?0.123).
Table 5.Multinomial analysis, causation analysis
In terms of the total evolution, this is, from recruitment to one month after the intervention (instant 0 to 2), there was no significant effects for the Physical Health Index (p?=?0.345) of this questionnaire; nor for Burden according to Zarit Test (p?=?0.338). This situation did not change either when considering just the type of intervention and the initial score, with p?=?0.946 for the Physical Health Index, p?=?0.272 for the Mental Health Index and p?=?0.523 for the Zarit Burden Index.
In terms of acquired knowledge, the intervention participants improved their mobility knowledge by 0.77 points in a 0 to 4 scale as a result of taking part in the experimental workshop (p?=?0.001), and 0,39 points in hygiene (p?=?0.001). However, other variables did not show significant progress: the improvement in feeding knowledge of 0.13 points did not reach statistical significance (p?=?0.329); nor did the 0.14 points improvement in disposal knowledge (p?=?0.373); or the 0.21 in Emotional self-care (p?=?0.119). All together, the average improvement in knowledge of 0.27 points was not significant either (p?=?0.089).
Multinomial analysis conclusions indicated that despite no significant improvement on Quality of Life or Burden had been achieved, significant progress had been achieved in Caregiving Knowledge.
Once the lost values had been substituted following these criteria, the ITA was conducted. In this case only the initial scores in the respective dimensions were included: mobility and hygiene knowledge declared before the intervention. The absence of other possible confounder and interaction variables was decided in order to insure the statistical power of the test. This ITA result was the loss of significance of the improvements in mobility (0.39, p?=?0.119) and hygiene (0.12, p?=?0.470).
As part of the analyses and following CONSORT declaration recommendations [25], Intracluster Correlation Coefficients (CCI) of the final values were calculated, so that we could contribute to sample size calculations of future investigations. Table 6 shows these results.
Table 6.Intracluster correlation coefficients
Our research hypothesis was that hospitalized, dependent patients? caregiver?s participation in a Health Educational Program could improve their quality of life, and reduce perceived burden, as well as improve caregiving knowledge. The statistical analysis results showed that no significant improvement in the two main variables was recorded. This outcome partially rejects our initial hypothesis. However, our intervention managed to increase the caregiving knowledge of caregivers, in terms of mobility and hygiene.
These results must be contextualized along collected evidence on these kinds of interventions since the 1980?s. Two successive meta-analyses by Pinquart [14] and Sorensen [13] found moderate positive effects in several dimensions: caregiving knowledge, burden, depressive symptoms, personal wellbeing and work satisfaction. Among these, only caregiving knowledge showed a medium size effect, while the other variables showed a significant but small effect. Also, these effects depended on the kind of intervention carried out, with psychoeducational and psychotherapeutic interventions showing the most consistent effects, above those of respite care, support groups, knowledge and multicomponent.
In turn, meta-analysis conducted by Thompson et al. in [28] only found significant improvements on depressive symptoms and for group psychoeducational interventions, while the effects of the rest of interventions and on the rest of the variables (burden, quality of life, etc.) were not significant.
On balance, the three meta-analyses referred above prove moderate effects on certain variables and on certain type of interventions. This conclusion is similar to those reached by previous meta-analyses, such as those by Knight et al.[12], that found larger effects in individual interventions than in group interventions, and a very low effect in respite interventions; Acton and Kang [29], that only identified improvements in burden in multicomponent interventions; or Brodaty et al.[30], that found significant improvements on emotional stress and knowledge, but not on burden, and systematic revisions such as those by Schulz et al. en [31], with small or moderate effects on burden, psychological symptoms and quality of life; Lee and Cameron [32], that did not find effects in respite interventions, and Garc?s et al.[33], that found contradictory results both in respite and psychoeducational interventions, with interventions showing positive effects and others no effects.
Thus, literature confirms the great difficulty in conducting effective interventions. Effectivity depends on multiple factors: type of intervention, duration, type of target population, recruitment and randomization strategies, aims, measured variables, etc. Accordingly, our study’s moderate effects have been similar to those of previously published interventions.
There are two factors that may have contributed to the reduced effects of our intervention. Firstly, the recorded mortality: 25.2%. The diversity of pathologies of our participants makes comparisons difficult, but research by Rodgers et al.[34], in a hospital context and with stroke patients, also with a high mortality, showed just 12.7% mortality, which illustrates how high our rate was. This higher than expected mortality couldn’t be included during sample size calculation since the bibliography [34] taken into account for this operation didn’t reflect such elevated numbers, resulting in a reduced statistical power.
Moreover, mean differences found in the SF12 mental scale are smaller than what was initially estimated during sample size calculation. This, added to the high mortality found, doesn’t allow us to clearly determine the program effectivity.
Along with these statistical problems, we may talk about several limitations in this study. Burden and quality of life below average were not established as inclusion criteria, which might have limited the potential benefits of the intervention. In contrast to this decision, research found by Zarit and Femia [35] that determined a minimum of emotional stress for inclusion, obtained significant improvements [36]-[38].
Also, the necessary standardization of the intervention, even adapting to the needs of caregivers after the initial exploration of their demands, may have limited the suitability of contents, given the sociodemographic heterogeneity of caregivers’ profiles, which, nevertheless, matched their general population [39]-[42].
Another element to consider was the fact that the duration of the intervention may have not been sufficient to achieve significant improvement. However, it was unfeasible to increase intervention time. Accordingly, the meta-analysis of Sorensen y Pinquart [13] found significant differences in the achieved effect on burden, depressive symptoms and symptoms of the patients depending on the duration of the intervention. The same conclusion was reached by Zarit and Femia [35], this is, that longer studies [43]-[45] had significant effects hard to replicate by shorter ones [46]-[49].
Finally, we must refer to the improvement in the physical health state of the control group after the intervention, and the worsening of the intervention group. This was an unexpected effect of the intervention, which leads us to wonder whether attending the knowledge workshops may have caused an increased conscience of the caregiver of his/her role, which manifests in somatization and worsening of his/her perceived physical health, while the unexpected effect on the control group is one of a greater calm and tranquility. It is also worth reflecting on the instruments employed. Zarit Burden Questionnaire, although adequate to diagnose and measure burden, is not so for measuring intervention results, for some of their dimensions do not match fixed stressors that are difficult to modify. [12],[50],[51]. Moreover, the caregiver evolution was not controlled within the possible variations of their social support.
Also SF12 questionnaire, as most of HRQoL ones, has a low sensitivity towards change. Therefore, it would have been more appropriate to take more measures extended in time to check the intervention effects. This reduced version is also less sensible than the original SF36, however it was chosen precisely because of its shortness, given the caregivers lack of time and emotional stress in the hospitalization context.
On the other hand, those dimensions that we are able to modify, such as caregiving knowledge, lack validated questionnaires, which impedes gaining further knowledge and makes it necessary to employ indirect measures such as patients? readmissions or life expectancies.
To conclude, we believe it is necessary to raise a debate on the suitability of the Randomized Clinical Trial for this kind of interventions. The possible inadequacy of Randomized Clinical Trials for psychosocial or educational interventions was demonstrated by Zarit [52] or Acton and Kang [29], and even some authors such as Dowling and Wiener [53], consider a moral dilemma to conduct interventions that lack any benefits (control group) on stressed and burdened caregivers, highly guilt ridden for abandoning their family member. The problems, as we see them, are of a practical nature too. Since participants recruitment becomes much more difficult, perhaps introducing bias into the psychosocial profile of participants, by encouraging the participation of caregivers with better resources and availability. The greatest quality of evidence can only be obtained through randomized clinical trials, but this implies a moral debate and leads us to reflect on the extent that research based on quasi-experimental pre-post designs ought to be employed.
We also need to refer to the results of the Intention to Treat Analysis. By adopting the worst possible scenario illogical effects occur: intervention group participants, by receiving the worst possible score, lose caregiving knowledge as a result of attending the speech. On the other hand, those in the control group, obtaining the best possible score, gain knowledge. It is clear how unreal this results are, so the strategy of adopting the worst possible scenario might not be suitable for this and other similar contexts.
It was shown that the caregiving relation is a complex one, which varies from one individual to the next, and for this reason the intervention must be personalized and adapted as much as possible. It was also shown that it is a fixed stressors relation, and difficult to modify. All this is in accordance with previous literature as well as with our theoretical framework. However, as we have previously discussed, our intervention had several limitations, and was not as adjusted, flexible and long as it would have been desirable.
We believe there are two different debates in relation to caregivers training. On the one hand, if evidence shows that caregiving knowledge might not improve the caregiver?s quality of life, this does not imply that the caregiver does not have the right to receive such training. It might be the case that quality of life does not depend on knowledge, but patients Access to knowledge is independent of their quality of life, for it constitutes one of the strategic axes of our health system, which aims to confer the patient a central and active role.
On the other hand, there is no doubt that the aim ought to be to develop the most effective programs in order to improve the quality of life of patients and their caregivers. Accordingly, we believe that although the need for training and support in the hospital environment was adequately identified by our team, the efficiency of the programs can only be improved through continual care, involving a wide network of formal and informal caregivers. Thus, one of the future challenges is for primary and secondary care service units to develop joint programs, in order to achieve that caregivers can feel supported throughout the entire caregiving process.
The authors declare that they have no competing interests.
AR has made substancial contributions to conception and design, analysis, interpretation of data and has been involved in drafting the manuscript. CG has been involved in acquisition of data, analysis, interpretation of data and drafting the manuscript. AO has been involved in acquisition of data, interpretation of data and drafting the manuscript. MJB has been involved in acquisition of data, make educational program and has reviewed the paper. SM has been involved in acquisition of data, make educational program and has reviewed the paper. All authors have made a critical review of the final publication, collecting each of the individual contributions that have improved the publication. All authors read and approved the final manuscript.
We acknowledge the Research Unit in Nursing and the Clinical Biostatistics Unit for the interest and confidence both have shown toward this future project, and we also acknowledge to heads of nursing hospitalization at our hospital for their help to require informal caregivers. To The Fundaci?n de Investigaci?n Biom?dica del Hospital Ram?n y Cajal for his finance help. To participants in this research for their cooperation. To Patient Care Unit, supported by accompanying patients while caregivers were trained. To director of nursing for her support in carrying out this project.
This research has been funded by Biomedical Research Foundation Ramon y Cajal in December 2009. This organization aims to support the development of scientific papers. It has not lucrative character.
Project financed by Fundaci?n de Investigaci?n Biom?dica del Hospital Ram?n y Cajal, Convocatoria Intramural Enfermera C81/08.
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Research article Francine Ducharme12*, Marie-Jeanne Kergoat134, Ren?e Coulombe2, Louise L?vesque2, Pascal Antoine5 and Florence Pasquier6 
Figure 1. Randomization and Participant Flow.