Family caregivers: what do they need? An integrative reviewAbstract
OBJECTIVE Aimed to identify the main needs expressed by family caregivers in caring for adependent person.
METHOD An integrative review of the literature in the period between 2010 and 2015 using specific search engine tools in the EBSCO and SCOPUSdatabases.
RESULTS 11 articles were selected, and the analysis of the scientific evidence obtained allowed for organizing the results into five thematic areas:transition into care, being responsible for everything, the importance of support, access to formal support, communication and informationprocesses.
CONCLUSION The results showed that caregivers have many needs in different areas, which should be addressed in nursing interventions.
Descriptors
Caregivers; Family; Home Nursing; Disabled Persons; Nursing Care; Review
Resumo
OBJETIVO Este estudo teve como objetivo identificar quais as principais necessidades manifestadas pelo cuidador familiar no cuidado à pessoa dependente.
MÉTODO Realizou-se uma revisão integrativa da literatura no período entre 2010 e 2015 com o recurso de instrumentos de busca específicos, nas bases de dados EBSCO e SCOPUS.
RESULTADOS Foram selecionados 11 artigos A análise da evidência científica obtida permitiu organizar os resultados em cinco áreas temáticas: a transição para o cuidar, o ser responsável por tudo, a importância do suporte, o acesso aos apoios formais, a comunicação e a informação na tomada de decisão.
CONCLUSÃO Os resultados demonstram que o cuidador apresenta inúmeras necessidades em áreas distintas,as quais devem ser abordadasnas intervenções de enfermagem.
Resumen
OBJETIVO Este estudio tuvo como objetivo identificar cuáles son las principales necesidades manifiestas por el cuidador familiar en el cuidado a la persona dependiente.
MÉTODO Se llevó a cabo una revisión integrativa de la literatura en el período entre 2010 y 2015 con el recurso de instrumentos de búsqueda específicos, en las bases de datos EBSCO y SCOPUS.
RESULTADOS Fueron seleccionados 11 artículos. El análisis de la evidencia científica permitió organizar los resultados en cinco áreas temáticas: la transición al cuidar, el ser responsable de todo, la importancia del soporte, el acceso a los apoyos formales, la comunicación y la información en la toma de decisión.
CONCLUSIÓN Los resultados demuestran que el cuidador presenta innumerables necesidades en áreas distintas, las que se deben abordar en las intervenciones de enfermería.
Descriptores
Cuidadores; Familia; Atención Domiciliaria de Salud; Personas con Discapacidad; Atención de Enfermería; Revisión
Introduction
Many families experience a situation of disease during the course of their life cycleand are faced with the transition into a new role: Being the Caregiver. Family caregiving emerges as a resource for dehospitalization, where people who are unprepared to perform care are expected to perform care which would be the responsibility of paid professionalsin a hospital or community. On returning home, the family is weakened and the family caregiver provides care, often intuitively, and there may be flaws in care, either resulting from the absence or lack in guidance received at the hospitalthat do not meet the real needs of the caregiver or the little time they have to learn the guidelines1.
Understanding the family care experience is to enter into a complex universe and at the same time it is unique2. The experience of caring for a dependent patient at home has become increasingly common in the daily lives of families and emerges as a resource for health institutions. This new role is experienced through a multitude of needs and feelings, often contradictory and antagonistic, due to the associated tension,competence and conflict. The onset of the disease within a family that leads the ill member to dependence also leads to the need to change their daily life activities, and this role is usually taken on by the caregiver who is usually awoman,single, a housewife or unemployed and lives together with the dependent person. The expectation that women should continue to support this disproportionate burden remains a silent assumption in most of the policy decision-making3. This role presents itself as an extension of the expected roles of the family, whichcombined with the sustainabilityalleged by health institutionspressures the family to play this role,without considering the requirements and needsassociated with it4. Numerous studies have been developed in this sphere of caregivers for dependent patients afflicted withdifferent pathologies.
By resorting to an integrative literature review, we aim to identify the needs which are more evidenced by family caregivers of dependent patients emerging from the scientific production of the past five years, and thusly contribute to improving nursing care. In this context, the integrative review allows quick access to relevant research findings that support nurses' decision making5.
Method
We resorted to an integrative review in order to group the existing knowledge about the needs of family caregivers of a dependent patient. This method is the most comprehensive approach regarding reviews, allowing for including different types of studies for a wider understanding of the analyzed phenomenon, and thereby playing an important role in evidence-based nursing practice6. The integrative review is an important toolin theprocess of communicatingresearch results, since it provides a summary of producedknowledge5.
Considering the knowledge that we intended to summarize, the review had the following questionas its starting point: What are the needs of family caregivers of dependent patients?
After identifying the theme and selecting the research question, the criteria for inclusion and exclusion of studies were established. Inclusion criteria were studies with family caregivers of dependent patients in the household,the caregiver being older than 18 years, and in which the study objective was to identify the needs of caregivers.Exclusion criteria were review articles,studies whose theme was centered on family caregivers who were less than 18 years of ageand studies with institutionalized care. Bibliographic research was carried out between September and December 2015.Articles published between January 2010 and December 2015 were selected using English, Spanish and Portuguese as languages. To this end, the research was conducted inavailable health databases, namely EBSCO and SCOPUS,through the following descriptors and Boolean:(Family caregiver OR Parents caregiver) AND (Patient OR Dependent care OR aged) AND (Heath services needs OR Information needs OR Needs) (Figure 1).The research was conducted using the abstract/title of the article andonly articles with full texts available were included.
After a full reading of the 41 studies, the final sample consisted of 11 articles that met the inclusion criteria. After establishing the sample, the information to be extracted from the studies was defined and categorized5. The 11 articles were analyzed in depth and grouped by similarity.
Results
This review consists of 11 articles published between 2010 and 2015.Six studies from the selected samplewere qualitative and five were quantitative. They were distributed as illustrated in Figure 2, in the following countries: Canada, USA, Brazil, Colombia, England, Italy and Thailand.
In the research conducted we obtained many studies that, despite referring to the needs of family caregivers for dependent people, they mostly focused on describing the feeling of being a caregiver or their experiences, not focusingon their needs of being a caregiver. The studies included in this integrative review are shown in Chart 1.
From analysis of the presented studies, five thematic areas emerged, as illustrated in Figure 3:transition into care, being responsible for everything, the importance of support, access to formal support, communication and information processes,which will be covered in more depth.
Discussion
Transition into care -The need for knowledge and learning
Transition into the role of being a caregiver for a dependent person is a complex process that involves many variables. Transition is a concept associated to the crisis theorywhich occurs, as mentioned by Meleis in the theory of transitions, from transition processes arising from either developments, or health/disease16. The transition period is viewed as a period of great importance in learning skills for the amount of care required for the patient11. To (provide) care in an independent manner, caregivers need to acquire new knowledge and skills in the self-care dimension to meet all the activities of daily life, particularly regarding mobilization, transfer, medical care at home, exercises for rehabilitation, how to provide care at home, managing the unexpected, among others12. Confronting this new roletakes place as soon as the dependent person and the caregiver return home,faced with new difficulties.Activities related to feeding, personal hygiene, mobility and dressing, previously performed with ease in daily life, have become tasks that require specific care and support1.
The domain of knowledge and learning how-to for family caregivers is one of the needs mentioned in most studies7,9,11-12,14-15, as this allows for better understanding of this new role of Being the caregiver. Although the progressive nature of this process is visible in some studies,namely its variation in complexity and amplitude with regard to special needs1,7,9,12,14-15,the family caregiver adapts to the situation after a period and feels like they can overcome these needs1.
A longitudinal study of 60 family caregivers for patients of a stroke (cerebrovascular accident - CVA) observed a change in the needs of caregivers over time: before hospital discharge, two weeks after hospitalization and 3 months after hospitalization, revealing a decrease of these needs over time14. The omnipresent fear of the unknown enhances the perceived lack of information and preparation, especially in the pre-discharge period, but reducing in the post-discharge period11. The same results are presented in another longitudinal study of 10 family caregivers for patients with Motor neuron disease/ Amyotrophic Multiple Sclerosis, followed for 2 years. In this study, the authors stress that initially there were many needs; however, over time, they seemed to become less prevalent as the caregiver became more experienced, despite the person's condition deteriorating15.
In contrast, a longitudinal study with 18 caregivers of dependent patients on two occasions of before and after hospital discharge emphasizes that what changed over time was just the focus of the questions. Concerns of the caregivers slowly moved away from the recipient only in the post-discharge period, and they began to seek recognition of their own needs and appreciate the care provided11.
Being responsible for everything -Need for time for the plurality of activities
The feeling of being responsible for everything is a fundamental characteristic that caregivers experience, stringing together various needs. The need to try to handle a variety of tasks simultaneously weighs on caregivers, creating a burden11. A multiplicity of previously existing roles is added to the caregiver role, which makes it difficult to take on this new role due to the difficulty inherent in time management, interaction and conflict of some of the roles. Conciliating the role of family caregivers with maintaining various roles and social relations becomes a challenge for caregivers, which can cause tension and conflict in this context13. One study enumerates some of these needs: having time to sleep; help for cooking and shopping; having time for family and friends; being able to go to church; having time for themselves14.
This role is reported as forgotten and abandoned for an indefinite period by caregivers3.Family caregivers must ensure the tasks that the dependent person is unable to do for themself, such as personal hygiene and mobility. However, incorporating many other activities for the person under their care such as ensuring a suitable environment, providing constant supervision and emotional support, managing difficult behavior, making decisions on their behalf, financial management of care,as well as providing nursing care and therapeutic tasks. In addition to specific care and responsibilities for the dependent family member, caregivers must continue to perform daily tasks that were already their responsibility before: being a mother, wife, cooking, and trying to juggle a multitude of tasks simultaneously11.
In a study of 73 family caregivers of older adults with dementia, depression and caregiver burden were associated to some needs in this theme, such as helping around the house, having time to relax and time to sleep10. Thus, it is important to provide strategies in this process to help caregivers manage their conflicting roles and ensure the maintenance of caregivers' health14.
The importance of support-Emotional and interpersonal needs
Support plays a decisive role in adapting to and in exercising the role of caregiver to obtain emotional support in a very vulnerable period11for their own families17.
Emotional and interpersonal needs, namely being able to rely on someone to vent and to get recognition for theircare efforts from friends and family are described throughout the analyzed studies, showing the importance of support for caregivers1-3,7,11-15.
Research results indicate that caregivers experience many challenges, including unmet needs in areas of relational support, such as maintaining long-term relationships and emotional support7. Developing strategies to support family caregivers and care recipients must be a focus of attention in the care for the family18.
Within emotional needs, some of them are listed as being: the need of having help to maintain hope for the future; being encouraged to ask others for help; expressing their feelings about the patient to someone who went through the same experience; having a partner or friends who understand how difficult this role is; having help/support with doubts and fears about the future; having time to go to their temple or church;discussing their feelings about the patient to be ensured that having strong negative feelings such as anxiety, worry, sadness, guilt and anger is normal14.
In a study of family caregivers of patients who suffered a stroke (cerebrovascular accident - CVA),emotions and feelings experienced in transition to the role of caregiver are stressed, as this is an unexpected and unfamiliar time initially generating an impact that culminates inan explosion of very intense feelingsexperienced by the caregiver1. Among them, feelings of hopelessness, fear and insecurity about the unknown and the future from that point forward are mentioned. The caregiver experiences an ambivalence of feelings demonstrated by happiness and hope, in contrast to feelings of stress, anxiety and deep sadness, which are expressed by continuous weeping/crying, demonstratingfeelings of being close to losing control, accompanied by abdicating self-care to take care of others1.
As pointed out in one of the studies, when caregivers reflect on the necessary support in this context, family members are described as essential11. Family is referred to as a major source of psychological and organizational support, as well as a few close friends. Thus, they report feeling alone and abandoned when this informal support disappears completely, hoping that it would be offered without the need of asking for it.
Similarly, it was found that most caregivers reported high levels of overload, depression and health problems, and that regardless of the sociodemographic characteristics of caregivers, there is a relationship between some of the family's needs and the presence of these problems. Moreover, the need for emotional support and counseling are the best predictors of support for caregivers10.
Access to formal support-Social needs, support network for caregivers, financial and structural support
Formal support is crucial for an effective transition into the role of caregiver, because from support it is possible to access health information, professional support and community network support14. Social needs, a support network for caregivers and economic and structural support are all described in the analyzed studies, with the importance of formal support being highlighted1,3,7-15. Caregivers reported different experiences associated with formal support; some felt supported and involved in nursing and therapeutic procedures, while others experienced little help, as well as a lack of understanding and empathy11. Some expressions of frustration from caregivers were directed toward their desire to receive more formal support regarding information and referral, home service/support for the patient, and relief services for themselves3. Temporary care needs or other help for the person are also mentioned;the need to participate in a support group;financial help with the costs;special equipment to meet the physical needs;nursing services at home;and help with transport.
In a study of 120 family caregivers of older women who had suffered a hip fracture, 42.6% of caregivers reported having at least one need for medical monitoring services, 13.5%, at least one need for social services and 13.5%, the need to join a support group and/or counseling to relieve stress. It is important to note that special attention should be given to caregivers who report having no needs regarding the provided care, a support group or help from social services8.
One of the most requested forms of support was rest for the caregiver, which was referred to as being very bureaucratic and difficult to get3. The lack of economic resources for purchasing materials for the new role, such as adapting facilities/buildings to provide residential care when architectural barriers are identified in the physical structure of the house can also be highlighted, making it difficult to provide proper care1. In general, personal interactions with groups of people and non-profit caregiver support were seen as some of the most beneficial sources of information and support3.
Many caregivers have limited access to information and little knowledge of existing support in their communities. Furthermore, even if these resources are available (for example for caregiver rest), usually the family caregiver feels an obligation to provide the care and does not end up using them9.
Communication and information processes -Need for information, communication
The role of nurses is significant asqualified health professionals to transmit the information necessary for decision-making tocare19. The need for information and communication with health professionals was a key issue for caregivers1,3,7-12,14. They emphasized the importance of how the information should be transmitted in terms of quality and quantity7. The need for consistent, reliable and current information was reported by caregivers, highlighting the challenge that they experienced in gatheringinformation3.
With regard to guidance and information received by family caregivers, the results indicate that was not enough to make them feel secure in providing care, and perhaps may have even contributed to increased fears relating to the care1. Caregivers expressed their preference for a more structured approach, complemented by some written information so they could review the material at a later date12. Some caregivers also expressed that too much information was transmitted and provided all at once11.
Preparing the future caregiver before hospital discharge can increase satisfaction of their needs during and after discharge, and often contributes to developing their perception of balance between the new and old activities involved in their routines1. As a consequence, one of the priority needs of the caregiver is to receive information and training from health professionals to modify their decision making. However,only upon arriving homedo caregivers become aware of the full sense of caring, realizing a realistic picture of the situation.Considering these issues, the possibility of caregivers experiencing this new role through shortweekend periods prior to hospital discharge should be considered11.
On the other hand, according to caregivers' reports it can be observed that learning about care was not mentioned as part of the guidelines communicated by health professionals1. Perhaps because of the feeling of being neglected by health professionals, they seek informal sources of information, giving them greater credibility and trust11.
Communication between health care professionals and caregivers during hospitalization is crucial, especially when discussing the needs of care and providing information14, and especially for those who are new in this role having to start a new chapter in their lives. Communication is a process that allows for a relationship between the health team and caregivers, not only integrating a dimension of content, but also a dimension of interpersonal relationships11.
Thus, the importance of the relationship between family caregivers and health professionals is observed, particularly of nurses since they are the professionals who spend the most time next to the patient during hospitalization1. It is argued that promoting positive communication strategies is essential for developing an effective relationship between caregiver and health workers, and especially the nurses who must have an empathetic attitude to encourage caregivers to express their needs11.
Recognizing the needs of family caregivers is extremely important, considering that it is the first step in diagnosingsubsequent planning of nursing interventions that can facilitate the transition process19. It is crucial to take advantage of this diagnosis, in order to introduce changes in the approach to caregivers, thereby facilitating their role in the family environment. Providing this attention to caregivers will promote personal and family health for dependents cared for at home20.
Conclusion
The transition into the caregiver role is complex and incorporates different needs throughout the process. The nurse has an important role and should meet the needs of family caregivers and the person they are caring for.
Five thematic areas were identified from the analyzed studies in this integrative review: transition into care, being responsible for everything, the importance of support, access to formal support, communication and information in decision making processes. There are many needs in various areas, such as the need for knowledge and learning for self-care arising from the transition to the new role of caregiver. These needs have a progressive character, in which know-how takes on greater importance at an early stage of the process.
Moreover, new tasks associated with care, which are unequally distributed among the family members, added to previously existing roles for caregivers cause imbalance in the family unit due to the time requirements necessary to perform the various activities that are expected from them.
The emotional needs are described as an important source of support for this new role, reducing caregiver burden. The importance of formal support, notably social needs, including rest for the caregiver, the existence of a support network for caregivers, and financial and structural support for care are also described. Finally, a mentionof information and communication needswith health professionals,stressing the difficulty that the caregiver has in gathering information for their decision-making, thus seeking out informal information sources.
Considering the unique and unrepeatable character of this new role, we highlight that despite the scientific studies incorporated in this integrative review being developed in different sociopolitical contexts, including patients with different pathologies, and taking into account their uniqueness, the evidenced needs seem to be, in a sense, transversal.
Evidence arising from this integrative review has practical implications in the effective monitoring of caregivers in the community and the methodology used to empower caregivers to care, as well as alerting nurses to modify interventions according to the actual needs of caregivers.
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