The start of caring for an elderly dependent family member: a qualitative metasynthesis

The world population has been experiencing a growth in the numbers of older people since the mid-twentieth century, a trend which will no doubt continue through the twenty-first century [1]. This increase in life expectancy is one of the greatest human achievements of recent times, but the fact of living longer carries the likelihood of suffering chronic and disabling diseases that involve increasing dependency [1].

At present, public policy offers low levels of formal long-term care provisions in most EU countries [2, 3]. As a result, family and friends—and especially women—are mitigating this shortcoming. Thus, the figure of the family caregivers appears, as ‘a non-professional person who provides primary assistance with activities of daily living, either in part or in whole, towards a dependent person in his/her immediate circle’ [2].

Taking care of a dependent person involves changes and assumption of new responsibilities by the caregivers, which change their lives significantly. They have to deal with activities of daily living that they previously did not have had to do [4]. Thus, many aspects of caregivers’ physical and mental health, as well as their social and family lives are affected negatively by their caring role [5], causing them problems with their physical health, relationships, personal well-being, and finances [6, 7].

The pathologies that generate dependency can appear progressively or suddenly. The type of appearance of the illness affects the adaptation process of the caregivers [8]. Progressive appearance diseases make the adaptation process easier because of the smooth and gradual onset of the disease. Abrupt or acute appearance diseases require an immediate adoption of the task of caring, and thus, these bring a more sudden change for the caregivers and make the adaptation process more difficult [9]. In this adaptation process, several aspects are involved, among which are the needs, expectations, consequences, and feelings of family caregivers [8].

Research shows that the initial stage of caregiving is the worst, especially when the relative has become suddenly dependent [10].

Helping caregivers to adapt to their role may diminish the negative consequences of care [11, 12]. In order to help this adaptation by implementing the right caregivers’ interventions, it is essential to know the process and characteristics that surround this change.

There are few studies that attempt to clarify the phases that a person goes through as a family caregiver at the beginning of her or his caregiver role, and those that do involve either theoretical research [13, 14] or they focus on specific issues and specific areas [15‐18].

Thus, we have perceived a need for a reinterpretation of the whole process of suddenly taking on a caregiver role. The knowledge and in-depth and holistic understanding of the caregivers’ experiences in the early stages will allow us to understand and identify the elements and dimensions involved in the process of becoming a family caregiver. With this, health-care professionals could be better informed and offer interventions that are better adapted to the situation faced by caregivers at the beginning of their caring role, ensuring the well-being of the caregiver and, therefore, of the care recipient as well.

Because there are several qualitative studies that offer an in-depth analysis of the beginning of the caring role, we decided to conduct a qualitative metasynthesis in order to expand the transferability of the results from this research. The aim of this metasynthesis is to explore the experiences during the early stages of a person becoming the caregiver of an elderly dependent relative who has suddenly experienced an acute illness. The specific aims were to identify qualitative research in this area, and through synthesis of the study findings, describe the characteristics and the process of becoming a caregiver.

The 19 articles included a total of 393 family caregivers. Most caregivers were women (77%), usually wives and daughters, of various nationalities and with an average age of approximately 50 years. The people cared for were dependent elderly persons (average age of 72 years), with different types of health conditions: stroke, cancer, hip fracture, brain injury, accident, sepsis and transplant.

Of the 19 articles (Table 1), one was written in Portuguese but had translations in English and Spanish, one was written in Spanish, and the others were all written in English. Geographically, five of the articles were from the United States, one from Canada (Ontario), two from South America (Brazil), seven from Europe (Italy, Scotland, England, Spain and Portugal), two from Asia (China), and two from Australia.

The different methodological approaches found were: (a) phenomenological design (three works); (b) content analysis (one); (c) thematic content (three); (d) ethnographic design (one); (e) grounded theory (four); (f) constant comparative analyses (two); (g) theory based on data (one); (h) Van Manen’s approach (one); and (i) method used not specified (three). The methods of collecting the information have been interviews and focus groups.

Regarding the methodological quality of the included studies, we found some weaknesses in the following questions: justification of the design used, adjustment of data collection method with the objective and methodology, and the analysis of authors’ role in the research (Table 2).

First, the appearance of different moments or stages of care in the caregivers’ discourses helped the researchers to classify the different categories around different stages of care: “It has different stages, they change and each stage has its good and bad things. You have to adapt as you can to each situation” [29].

According to this fact, and following the analysis, three categories appeared that involved the process of becoming a caregiver: ‘Taking on the role’ (including life changes, caregivers’ uncertainty and confusion, and caregivers’ acceptance or resistance); ‘beginning to realise’ (including caregivers’ new needs, impact, and appraisal), and ‘implementing strategies’ (including seeking help and self-learning, reordering family and social relationships, solving problems, and devising strategies to decrease negative emotions and stress) (Fig. 3).

The findings of the present metasynthesis respond to the objective proposed in the research and show that the process by which people suddenly become caregivers of an elderly relative in a situation of dependence is dynamic and progressive in time. It happens when a family member develops symptoms that make it difficult to carry out the activities of his daily life, and a person from his family environment helps him with the care needs that arise, until this person who takes on the caregiver’s role begins to realise the consequences and tries to normalise his new role of caregiver.

There is no article that indicates the generic phases through which a caregiver passes to take care of a dependent family suffering an acute-onset illness, but we found articles that describe stages of this transition in dementia [15, 17, 18], research about the stages towards cohabitation [16], the process of adaptation to dependency in older adults and their families [49], some theoretical approaches [13], and another review about family care in terminally ill patients [50]. Firbank and Johnson [16], examine the paths that lead elderly people and their family caregivers to cohabiting. Bunn et al. [15] evaluate the qualitative evidence about how people accommodate and adapt to the diagnosis of dementia and its immediate consequences. Prorok et al. [18] try to understand the health-care experience of people with dementia and their carevigers. Gibbons et al. [17] try to understand the experience of family caregivers during the liminality phase. Finally, Martín et al. [50] reveal the experience of family caregivers who care for a terminally ill patient in their home. The results of these studies coincide roughly with our results, so that Firbank and Johnson [16], Bunn et al. [15], Gibbons et al. [17], and Martín et al. [50] first identified a health event that causes some kind of dependency in a family, which means that a family member takes over care, hence after diagnosis, the stage of change begins.

A common event in all phases of research dedicated to the process of becoming a caregiver is the changes. This research shows that the trigger with which the process of becoming a caregiver begins is the great change caused by a dependence situation in a family member. This is widely supported with various studies. Bunn et al. [15] and Moreno-Cámara et al. [11] describe these changes in a way that is similar the present research; during the first phase of care, when the family has been diagnosed with dementia and begins with a succession of changes that interfere with all areas of the lives of the caregiver, and to which they must adapt. Gibbons et al. [17], speaks about a pivotal event (disability or illness) in the pre-liminal phase that turns the lives of caregivers upside down and causes changes in the intermediate stage of care; in particular they highlight social changes. Prorok et al. [18] agree with our results that identify confusion and uncertainty early in the process, and identify changes in the last phase of the start of care, in which the caregiver must live with these changes. Changes are also a constant in most of the research on the early stages of care [9, 50‐55]. In spite of ‘change’ being a category as such individually, it is also the precursory of other categories and influences in the development of them, not only because of its meaning but because all other categories that make up the process of becoming a caregiver happen with subsequent changes. For this reason, it is a dimension identified in the early stages of care.

In this first phase of assuming the role of caregiver, a range of emotions experienced by carers will accompany the changes, highlighting the uncertainty and suffering that coincide with those expressed by Gibbons et al. [17] in the liminal and post-liminal phase in their research about the beginning of caring, and by Moreno et al. [11]. These emotions have also consistently surfaced in several original studies and reviews about the beginning stage of care [54, 56] and they are widely developed in the studies of this metasynthesis, from comforting and satisfying emotions to emotions of fear and despair.

In the second stage, caregivers begin to realise their new role. In this way, new needs arise that are associated with the care of their relative, and they start to experience the consequences of exercising this role. The results of this metasynthesis resemble those found in Prorok’s article [18], which identifies the need for information during the early stages of care, Bunn’s article [15], which also describes the second phase of the start of care as a time when conflicts arise, and Firbank’s research [16], which explains the elderly person’s inability to perform activities of daily living and the children’s needs in providing help to their parent. Also, the needs that emerge in the early stages of caring are matched in studies of caregivers of people who have had a stroke [56, 57], and the consequences coincide, to a large degree, with the results most commonly found in other research into the early stages of care [55, 58, 59].

During the third phase, which involves implementation of strategies to minimise the negative effects of care, the emotional consequences and stress occur. Caregivers seek to learn the skills to become more self-sufficient in care and finally reorganise relations for a better adaptation of both the family and social situation. Among these implemented strategies we can find coping strategies, which include seeking help and solving the problems that arise during care. The latest strategy is, according to Gottlieb and Wolfe [60], the most important and better coping strategy. This coincides roughly with the third stage proposed by Bunn et al. [15] where, as in this metasynthesis, the implementation of strategies that help to minimise the impact of care was located after the initial changes, and with Prorok’s [18] and Moreno-Cámara’s research [11], identifying self-learning as also being an important strategy of implementation. All these facts mark a new situation of normality for the family caregiver [17, 48], thus showing a sample of acceptance and normalization of her new role and culminating the process of conversion to caregiver.

It is interesting how significant differences were not found in relation to the different pathologies that the dependent person suffered, but to their level of dependence and the abilities of the caregiver to develop adequate coping strategies. The phases proposed in this research can be related to the common phases of a crisis, referred to as ‘a temporary event with a start and an end that appears unexpectedly and whose course follows the following phases: impact phase, reaction phase and phase of reorientation’ ([61] p. 51). In agreement with the results of the present research and the phases proposed by Ruiz [61], it could be determined that the people who become caregivers at first are impacted due to the unexpected character of their new role, stunning him and affecting him emotionally. This could correspond to a state of shock, which is characterised by a state of shock and blockage. The reaction phase is related to the awareness of the situation, which implies suffering and different emotional reactions. After that, the reorientation phase is characterised by the assimilation of the situation, whereby the caregiver begins to accept what has happened and is mobilised to face and overcome the situation, producing in this way a readjustment in their lives in search of a new stability.

The results of this metasynthesis help us to understand how a relative takes care of a dependent elderly person and how this care evolves until the caregiver begins to adapt to this role. Knowing the stages of the process of becoming a caregiver may be useful for health professionals in establishing interventions tailored to each stage in order to help caregivers to adapt to their new role and resolve their uncertainty and inexperience.

Because the first moments of care have a common succession of changes triggered after diagnosis, which causes feelings of confusion, suffering, and uncertainty, early interventions might be appropriate based on generic information about the disease that has led to the dependence of the older person, the care needs during the first moments of care, and information about available resources, in order to alleviate feelings of confusion and uncertainty experienced by caregivers. During the second and third stages, caregivers evaluate the caring situation and implement strategies to adapt to the caring situation; at this time, tailored interventions are needed to help caregivers in assuming their role, implementing better adaptive strategies, and solving care needs.

The main contribution of this study is the identification of the process characterised through the stages of ‘taking on the role’, ‘beginning to realise’, and ‘implementing strategies’. At the beginning stage of caring for a dependent family member, it is usual for the caregiver to experience changes that affect most aspects of the caregiver’s life, such as the responsibilities they assume and the activities they must perform once they become carers. As they have to perform all the activities and meet all the needs that the patient cannot do for themselves, there is an increase in their own needs that is provoked by the new situation that they have to deal with regarding their caring role. All this entails some consequences for the caregiver, which often tend to be emotional, familial, and social. Finally, the carer of an elderly person who becomes dependent suddenly seeks strategies to normalise their situation as caregiver and reduce stress.

This study will allow us to learn more about the transition to the role of caregiver in order to propose a more detailed plan of care, with specific interventions during the early days of caring. Early interventions based on generic information may be needed at the beginning of the process in order to alleviate uncertainty, and tailored interventions may be needed later, depending on the evaluation of the caring situation, in order to help caregivers with implementing adaptive strategies.

We recommend that future research should include the development of studies that address the process of becoming a primary caregiver as a phenomenon of global study with primary data.