INTRODUCTION

In past several years, there has been an increasing presence of analysis about informal long-term care in different knowledge areas, both in the field of the health sciences and the social sciences. However, a systematic approach to the presence and importance of this issue has not been undertaken in the area of nursing yet.

Informal care is defined as the home-based care provision given to people in dependency situation of the family, based on affective relationships with a role assigned to women ¹. It is often carried out in the framework of the household, almost 90 % of the total care time received by the older is conducted by family members ², and it is women who do most of it ^{3 4}-⁵.

Care-giving involves a significant amount of energy and time commitment by the caregiver. 95.9 % of the care-givers of people aged 65 or over state providing care from 6 to 7 days a week and 38.9 % dedicates to this task at least 16 hours a day ⁴. All this has a negative impact on the caregivers’ health and their family, professional and social relationships, as well as on their quality of life.

The socio-demographic and cultural changes of the past decades, the variation of women’s role through the increase of their presence in the labor market and the changes in family models, have posed new demands and challenges to the Welfare state ⁷. In 2006, with the law to promote personal autonomy and care for dependent people (LAPAD) in Spain, the government adopted a regulation that unified the basic framework of the individual and subjective rights of the people in a functional dependency situation through the creation of a portfolio of services and benefits ⁸.

Due to the economic crisis started in 2008 all the state budget lines were affected by cutbacks and all the progress achieved in this sense was lost. Ten years after its birth, the failure of the law is obvious and poses the again the question of what answers and solutions need to be given to informal care and the care for dependent adults. As a result of both cutbacks in the welfare system and the increasing situations of chronicity, the welfare system in the coming years will have as a challenge the attention to people with dependency but in a different manner to the existing one up to now.

A new organizational model is proposed; a model that aims at being accessible and able to provide appropriate answers to the emerging needs ⁹. The design of this new model is built upon the dual premise that the place of residence is the best place where the chronic patient can maintain control over their care ¹⁰ and community health must be integrated into the care system since it is the basic level of attention that guarantees the totality and the continuity of care ¹¹,¹², In this scenario, the nurse has an integral vision that contextualizes the need and the capacity of self-care ¹⁰,¹³,¹⁴.

The new scenario will require both a stance and knowledge on the part of nurses in order to transform the challenges into opportunities for impulse, progress and strengthening of community nursing, increasing the competences so that they are focused on the patient, the family and the community’s care needs, and encouraging deeper alliances with other care agents ⁹. The nurse must reflect on the new context as well as on her role in it.

The aim of this systematic review is to identify the features of the scientific production in the field of nursing about informal care from 2007 to 2016 from the point of view of nurses, linking analyses and reflections, highlighting current trends and, with the purpose of suggesting futures research lines, identifying possible absences in the studies.

METHODOLOGY

We have conducted a systematic review of scientific publications about informal care and informal caregivers in Spain.

The search was set during the period from 2007 to 2016 and it was carried out pursing the following questions: what are the characteristics and the main themes of the publications in nursing scientific journals about informal care in the period from 2007 to 2016? Do these publications reflect the recent changes in the approach to chronicity and informal care? What aspects related to informal care of chronicity receives attention and which ones do not? What are the issues to which the nursing literature pays scant attention and that, therefore, can be fertile and innovative lines of research in the future?

For the bibliographic search, we have used the following keywords: “informal care Spain”, “informal caregivers Spain”, “family care Spain”, “care home Spain”, “family caregivers Spain”, “care crisis Spain”, and “economic crisis Spain” in the main national and international databases: Pubmed, Scopus, Dialnet, Cinahl and Scielo. We have used, in turn, the same terms in Spanish: “cuidados informales”, “cuidadores informales”, “cuidados familiares”, “cuidados en el hogar”, “cuidadores familiares”, “crisis de los cuidados” and “crisis económica”.

We have included all the articles (originals, reviews, briefs and reflections) published in Spanish or in English in nursing journals about informal care and informal caregivers of the elderly in a functional dependency situation in a home environment in Spain.

The articles that were excluded were the ones about informal cares in specific pathologies (dementia, CVA…) or acute situations, the articles about informal care in a hospital or institutionalized context, and the articles about pediatric care.

The selection strategy consisted of the elaboration of a list of all the articles found from the search by keywords. Subsequently, we proceeded to suppress the duplicated articles. Finally, we conducted a review of the titles and located the summaries of the selected articles, discarding those that did not meet the inclusion criteria.

RESULTS

We obtained 660 articles out of the search. After a first reading of their title and summary, 601 were discarded for not being related to aim of the research. At the end, there were 59 articles which both met the inclusion criteria and were fully accessible.

The list of the analyzed articles is presented in Table I.

In order to answer the questions posed in this article, we present now the results of the quantitative and qualitative analysis.

The main results of the quantitative analysis, the aim of which was to quantify the scientific production depending on the typology are shown in Table II.

The number of publications related to the research topic was steady during the review period, with a slight increase during the years 2012 and 2013 and, decreasing significantly during the years 2015 and 2016. We detect that the most published type of the article between 2007 and 2016 was the one based on an original quantitative study, with a total of 21 articles edited, followed by the original article based on in a qualitative study, with a total of 11. The less recurring article typology was the qualitative review, with 4 articles.

The articles based on quantitative studies provide, above all, descriptive data about the profile of caregivers, tools and measurement scales of the overburden resulting from the care, and assessments of nursing interventions. The fact that this kind of article was the one published more frequently is consistent with the fact that historically nursing has prioritized experimental designs, data collection through surveys and standardized quizzes, and data analysis statistical techniques.

Throughout the analysis, we have observed that biographical accounts and life stories are among the most used techniques in the descriptive qualitative researches of descriptive nature with the aim of collecting first-hand the experiences of caregivers. These stories highlight different issues such as the impact of care, personal satisfaction resulting from meeting family needs, different care burdens between men and women, as well as the need of social and health measures which improve their life’s quality. Other qualitative techniques used are focus groups, discussion groups and semi-structured or in-depth interviews. These show the existence of numerous strategies to organize informal care and that the caregivers do not feel supported by the public policies. In this regard, qualitative research has great potential to the nursing profession to identify the subjective needs of care, to offer care on a more individual level and to create new research options.

The aim of the qualitative analysis conducted for this article was to characterize the scientific production according to topics it covers; there are three topics worth shedding light on (Figure 1).

Figure 1 Main topics of the publications 

The first predominant theme in the analyzed publications is the caregiver’s profile and the results of care on her. This is considered important in order to suggest preventive activities. To the study of the caregiver’s profile, the publications add the study of the care impact on her, and they classify it as either positive or negative. Positive impacts include the caregiver’s development and personal growth and the chance of having a job. The negative impacts, more numerous and frequent, include an important chronic stress which affects both the physical and mental health and the quality of life of the caregiver, as well as economic, labor and social aspects.

A second theme we have detected consists in the intervention to promote care and self-care, and the prevention of overburden resulting from care. The importance of taking the caregiver into account and identifying the strategies designed for her is argued because these can contribute to her control over her quality of life and her own health. Therefore, the main task of nurses, alongside with caregivers, consists of the training and the counselling that seek to expand their knowledge and abilities in care and self-care.

The third and last theme refers to the use of evaluation tools to plan the care of the caregiver. Suggestions are made to use the standardized nursing language based on the North American Nursing Association criteria (NANDA). The use of nursing diagnoses as a tool to plan objectives and interventions unifies and ensures an understanding between professionals. It is also important to consider the elaboration and use of recommendation handbooks on daily practice with a care methodology that allows a global vision of people’s needs and to improve the quality of their care.

DISCUSSION

The analyzed publications largely reflect the assistance spin in the field of chronicity toward the community and home level announced by the policies and the health plans of different Spanish Autonomic Regions ¹⁰,¹¹,¹²,¹⁴.This spin, in turn, provides an increasing importance to informal caregivers in health and care processes ^{15 16}-¹⁷.

A constant in the different strategies of improvement in community care and in the health plans we have reviewed, as well as in the analyzed articles, is the statement that the nurse has the responsibility to incorporate the caregiver as a user with a right to maintain their health ¹⁸.

Most of the articles we have analyzed share, either implicitly or explicitly, a more utilitarian view of the caregiver, who is built, presented and treated as a resource, whose health is important to consider in order to warrant that they will be able to continue caring ¹⁹. Ultimately, we detect, a latent tension between a preventive approaching to this figure as a future patient, and an interest on the part of the nursing profession, often secondary, toward the caregiver as a mere resource or collaborator.

The analysis of the publications shows that the nursing profession does not pose in a comprehensive way its specific contribution in the frame of new chronicity paradigms neither a new stance before the structural impacts that these have on informal care ⁹,²⁰. This causes a transfer of responsibility toward care by and from public administrations to the families ¹⁴.

To conclude and in order to answer the posed questions:

The publications are focused on studies aimed at knowing the caregiver’s profile and how to plan interventions recommending evaluation tools. The studies about informal care, which have a great social impact in the emerging health situation, only add up 8.3 % of the publications in nursing journals.

The changes reflected in the approach to dependency are a comeback to the previous scenario to LAPAD, since the responsibility toward care returns and to the home environment. This is one of the many consequences of the economic crisis and the cutbacks in health, as Rodríguez Cabrero notes ⁵.

The changes in nursing competencies are aimed at the community and home care taking into account the person who receives care and the caregiver, but teaching and empowering them on disease and self-care ¹⁰,²¹,²².

The publications do not analyze the existing socio-economic inequalities in care. Some of them do mention their economic or labor impacts on the caregiver, but they do not problematize that not all the families are in the same conditions to respond to them or to search alternatives. Social inequalities existing previously to the care experience promote in turn additional health, free time and, among others, labor inequalities among families ²³.

If nursing wants to acquire a complex vision of care in order to give effectively answers, it will be necessary to add a specific attention to the social inequalities presents in it. Particularly in times of crisis, as Úbeda & Roca state ²¹, it becomes essential to consider these aspects to raise awareness among nurses of people’s realities, both people who receive care and caregivers.

CONCLUSION

Nursing publications focus on studies to know the caregiver’s profile how to plan the interventions recommending evaluation tools.

They also successfully identify the centrality of informal care in new scenarios and chronicity paradigms, and reflect the assistance spin toward homes and families. The family is considered as the main responsible of care, and within in women are the main providers.

The publications do not problematize, nevertheless, the current transfer of care responsibilities from public administrations toward the family circle. They do not analyze in-depth either the prevailing socio-economic and gender inequalities in the current care scenario. The approach to these two issues can contribute to open new lines of research and intervention in the nursing field.