Key Words: informal caregiver, dependence, overload

Introduction

The family is the basic unit of support to those who need care, children, youth and adults. It is the cultural tradition of Mediterranean people give to families, especially the female members, the responsibility of care, especially care for older members and closest ties¹.

The provision of care requires an ongoing effort at cognitive, emotional and physical, often unrecognized and inadequately rewarded².

Caring for carers is also a responsibility and should be a concern for us all, as well as policy makers. The family caregivers represent a response and new challenges for society. Portuguese society has undergone profound changes in their population structures and patterns of social interaction. Emerged from a larger population and with new aspirations and demands on improving the quality of life³.

These changes and the subsequent industrialization and modernization of economic structures, have caused a number of changes in family structure, organization, relations and family solidarity. With the increase of the cited life expectancy, it is more common, especially in older people more and more advanced, the presence of diseases associated with aging.

Grelha⁴ carried out a study aiming to identify the factors that influence the quality of life of informal caregivers of dependent elderly, home in context. This is a quantitative, quasi-experimental, exploratory, descriptive, transversal and comparative. The instrument of data collection, was the form, composed of independent variables (socio - demographic and contextual) of informal caregivers, Scale and Barthel Scale of Quality of Life - Bref Whoof, where the population consisted of 80 informal caregivers. The results of this investigation showed that the factors: current status of employment (the household and who have never worked), cohabitation, duration and degree of dependency of the elderly adversely affect the quality of life of informal caregivers, affecting the area of the relationship social. While informal caregivers who were exercising their profession, providing less care to the elderly dependent and having support of the continuing care and palliative care, had better quality of life.

Andrade⁵ in his research entitled "Informal Care to Dependent Elderly Home Care in Context: Educational Needs of the Caregiver Home" was intended to study and identify the educational needs of the primary caregiver in providing informal care to dependent elderly person at home. The study found that caregivers report daily to build your training process to manage, develop personal skills through daily experience, namely: the construction of a social support of formal support and / or informal, to build a physical environment to provide safe care, the accumulated knowledge / skills gained, the development of personal ability and physical capacity of personal emotion. In addition, caregivers learn through formal education (with neighbors and family) and non-formal education (through health professionals and / or social), and are not a formal education process⁵.

Santos⁶ seeking to study "The Life of Informal Caregivers in Providing Care for Elderly Dependent" the study aimed to understand the experiences felt by the primary informal caregiver family in caring for the elderly dependent, inserted in the Continuing Care Program Health Center Lourinhã and understand how caring affects the caregiver's life. The caregivers who participated in this study were predominantly female, since it is the woman who still holds the role of caregiver. The age ranges between 30 and 82 years. Most were married, or shared the responsibilities of home and family with the care activities. The degree of kinship with the elderly, the largest proportion, were daughters, followed by spouses. The results revealed that the motives for the caregiver to take care of the elderly were dependent on the worsening state of health of the elderly, duty / obligation, no other answer and affection / reciprocity. The difficulties experienced by the caregiver were fatigue, illness, overload linked to the type of work performed, the acceptance of non-state dependency of the elderly. The support given by the informal network that has most evidence is the emotional/psychological⁶.

Faced with the problem of informal caregivers, it seems essential to understand the sociodemographic characteristics of informal caregivers of clients admitted to the Continuous Care Units of Entroncamento city, and Ourém city, Portugal; know the sociodemographic characteristics of users admitted in the Continuous Care Units of Entroncamento city, and Ourém city, Portugal; assess the level of dependency of clients admitted Continuous Care Units of Entroncamento city, and Ourém city, Portugal; determine the level of subjective burden, caregiver satisfaction and impact of care on informal caregivers of clients admitted to the Continuous Care Units of Entroncamento city, and Ourém city, Portugal; determine the relationship between levels of subjective burden, caregiver satisfaction and impact care of the informal caregiver and the level of dependency of clients admitted to the Continuous Care Units of Entroncamento city, and Ourém city, Portugal and analyze the relationship between levels of subjective burden, caregiver satisfaction and impact of informal care and caregiver sociodemographic characteristics of informal carers of users admitted to the Continuous Care Units of Entroncamento city, and Ourém city, Portugal.

Method

In this study we used the quantitative method, using a correlational study⁷, applied in a single moment by a questionnaire consisting of sociodemographic informal caregivers and dependents admitted by Barthel Index (BI) and the Caregiving Appraisal Scale (Lawton, Kleban, Moss, Rovine, and Glicksman, 1989), translated and adapted to Portuguese as Scale Evaluation of Informal Care⁸.

Bearing in mind the objectives of this research we define the following research questions: What are the sociodemographic characteristics of informal caregivers and users admitted to the Continuous Care Units of Entroncamento city, and Ourém city, Portugal; What is the level dependency of clients admitted and what is the level of subjective burden, caregiver satisfaction and impact of care on informal caregivers of clients admitted to the Continuous Care Units of Entroncamento city, and Ourém city, Portugal.

It was determined hypotheses complex, non-directional, namely: Is there a statistically significant correlation between the level of subjective burden, the impact of care and caregiver satisfaction and level of dependency of the Users hospitalized to the Continuous Care Units of Entroncamento city, and Ourém city, Portugal; There are significant differences between the level of subjective burden, the impact of care and caregiver satisfaction, and sociodemographic characteristics of Informal caregivers of Users admitted to the Continuous Care Units of Entroncamento city, and Ourém city, Portugal.

The non-probabilistic sample of convenience, consisted of 32 individuals of both sexes. This sample was selected from informal carers of users of Continuous Care Units of Entroncamento city, and Ourém city, Portugal, which were in institutions for the visit to your dependent and who met the following inclusion criteria: having more than 18 years, of both sexes, be present at the Continuous Care Units of Entroncamento to visit his dependent; voluntarily participate in research, have the ability to respond to written or oral research tool.

The instrument of data collection was carried out after institutional approval and informed consent of the caregivers who participated in the study. Data collection took place between May and July 2011.
Given a non-normal distribution of the variables under study (p <0.05) were used in research nonparametric statistics.

Results

In order to meet the targets following are the results:

a) Characterization of the Caregiver

The caregivers who participated in this study, are predominantly female (34.4%) with an average age of 58.56 years (SD = 14.07). Regarding marital status, it appears that a total of 32 respondents, a significant majority of 25 (78.1%) has married state, two (6.3%) were single, 5 (15.6%) live apart or divorced. The distribution by education level of respondents it appears that the sample has an education mainly at the level of preparation (5 to 9 years) with 31.3%. It is still a significant number of caregivers who cannot read and write (21.9%), caregivers and even without any schooling but can read and write (9.4%). For the current work situation (for the year 2011), it appears that the total of 32 respondents, 14 (43.8%) are employed, and two (6.3%) are in the situation unemployed, five (15.69%) are domestic and 11 (34.4%) are in retirement. With regard to the number of people who have the caregiver in charge, it was found that the sample 32 respondents, 22 (68.8%) take care of only one person, and 10 (31.3%) were simultaneously care more than one dependent.

With regard to the duration are dependent found that the sample 32 respondents most lies between one and two years.

Regarding the degree of relationship between caregiver and dependent, it appears that the 32 respondents, 14 (43.8%), are husband or wife.

With regard to how carers feel prepared to care for dependents, it is found that eight of 32 respondents (25.0%) believe not at all prepared, two (6.3%) say they are somewhat prepared, 10 (31.3%) reported feeling very prepared and only 2 caregivers (6.3%) consider themselves very prepared.

b) Assessment Scale Informal Caregiver:

In examining Table 1, referring to results obtained with the Scale of Assessment of Informal Caregivers, and bearing in mind that the interpretation of results is made on the basis that the higher the sum of the items of this subscale is the most symptom, we can infer that because the averages are close to the higher values, the sample exhibits the symptoms described. Comparing the two dimensions consisting of five items covering subjective caregiver overload and caregiver satisfaction, we found that this last dimension has an average upper and lower standard deviation, which gives a more consistent response and simultaneously allows us to conclude that caregivers had more satisfaction (M = 17.03) that overload (M = 15.75).

Table 1: Results of the Assessment Scale for the sample Informal Caregiver.

c) Characterization of the Dependent:

For the sex of the dependent admitted supported by caregivers polled, it is apparent that the number of people is much greater than 20 (62.5%) in 12 women (37.5%). We found on the person's age dependent, the 32 respondents in our sample, addicts have ages between 17 and 87, with an average of 71.72 years (SD = 12.89). With regard to the characterization of the sample dependent on the level of which there is a total of 32 respondents, 13 (40.6%) has a level of severe dependency.

d) Factors related to the level of subjective burden, the impact of care and caregiver satisfaction:

The analysis of Table 2, we conclude that there is a statistically significant correlation between subjective burden and level of dependence (p <0.05) and the impact of care and level of dependence (p <0.05). With regard to the correlation between the caregiver and the satisfaction degree of dependence there is no statistically significant correlation. Thus we can conclude that it partially confirms the hypothesis under study.

We can also infer from the analysis of the above table that the correlation between the overhead and the level of dependence (rho - 0.728) is stronger compared to the correlation between the impact and level of dependence (rho - 0.540).

Table 2: Spearman correlation between the level of subjective burden, the impact of care and caregiver satisfaction and level of dependency

The data obtained in our investigation lead us to conclude that there still exist significant differences between the level of subjective burden, the impact of care and caregiver satisfaction and gender of informal carers, as in all dimensions assessed by the U test of Mann -Whitney, the significance level is always greater than 0.05 (p> 0.05). We also verified there is no statistically significant correlation between the dimensions of subjective burden, caregiver satisfaction and impact of care and age of the caregiver.

Regarding the hypothesis "there are significant differences between the level of subjective burden, impact and satisfaction of care and caregiver education level of informal carers of users admitted in the Continuous Care Units of Entroncamento city, and Ourém city, Portugal”, the same as it is confirmed that all dimensions have a p <0.05, ranging from p = 0.007 for the size of the impact of care and p = 0.023 for the size caregiver satisfaction, relating them to the level of education (Table 3).

With closer examination, we can say that the elements of the sample than just "read and write" always show the highest values for the mean rank in three dimensions on the one hand have the highest average values in the dimensions of the subjective burden caregiver and impact care, with a dimensional connectivity negative, on the other hand are those with mean values higher satisfaction care, that is, the portion of the sample which most suffer the carefully removed and more satisfaction.

For the measurement of subjective caregiver burden, and the sample with schooling "knows how to read and write" described in the preceding paragraph also caregivers with the "secondary" have a value far above the other sample groups.

For the measurement of caregiver satisfaction, another group that stands out is the population with primary education (mean rank = 24.50).
The second portion of the sample which has a higher value for the size impact of care, is the sample corresponding to the level of high school / higher (mean rank = 24.00).

Table 3: Results of applying the Kruskal-Wallis test between the level of subjective burden, impact and satisfaction of care and caregiver education level of informal caregivers.

Given the hypothesis "there are significant differences between the level of subjective burden, the impact of care and caregiver satisfaction and the degree of relationship of informal carers of users admitted in the Continuous Care Units of Entroncamento city, and Ourém city, Portugal”, and taking into account the value greater than 0, 05 for the significance level in all dimensions, we are led to reject the hypothesis because of the relationships found are not statistically significant.

Discussion of Results and Conclusion

Starting this analysis for the characterization of our sample, we found that consists mostly of females (65.6%), which is consistent with data found in several studies where it remains the social and historical role of caregiver is assigned the woman (3,9,10,11,12). Regarding the age of the caregivers in the sample, we obtained an average of 58.56, very close to the average age of the study Grellha(4) who obtained a value of 58.66, which goes against several studies reported by Pereira & Felgueiras¹³ and Buchanan et al¹⁴, where a mean age mention that is generally greater than 50.
With regard to marital status, 78.1% of the sample are married, which is consistent with studies conducted by Almeida¹⁵, Paixão, Tavares, Saraiva & Monteiro¹⁶, Figueiredo¹ and Santos⁶.

Most of the sample is educated, 12.5% have primary education and 31.3% have preparatory education there yet a further dimension of people unable to read or write, 21.9%. Felgueiras & Pereira¹³ states that a sample of 50 caregivers have a 82% cycle, 2% the 3rd cycle, a high school 4%, 2% have higher education and 10% did not attend the school. This means that our sample had an education level higher than Felgueiras & Pereira¹³.

Regarding the severity of the dependence of admitted users, 40.6% have a severe level of dependence and 25.0% a slight level. These data are attested in part with those obtained by Santos⁶ where 30.4% have a severe level of dependence and 9.8% very severe level of dependence. Louro¹⁷ in their study found similar results 44.8% of patients admitted to the Continuing Care Units showed a moderate dependence, 29.2% of total dependence and 15.2% severe addiction.

Analyzing the results obtained with the rating scale of informal care, found the means, go in the opposite direction to those found by Lage¹⁸ whose averages are considerably lower than those found in our study.

Regarding the results obtained in the event there is a relationship between subjective burden and level of dependence and the impact of care and level of dependency, Lage¹⁸ found statistically significant relationships between the subscales subjective burden and caregiver satisfaction and level of dependency (p = 0003 and p = 0.024) respectively, this means that partially confirms the data found in our study.

There were no statistically significant differences between the results obtained on the subscales of the Scale of Assessment of caregiver taking into account the sex of the caregiver, however, Lage¹⁸ verified the existence of this same relation to the impact of Care subscale (U = 1243, 50, p = 0.038). In their sample, men feel less carers Impact of Care that caregivers were female, since the value, on average, for this subscale is lower in men than in women, which goes in the opposite direction to the data found this investigation. This should relate to the fact that at home, who plays the leading role traditionally be a woman, and in fact the continuum, even by the fact that the financial burden associated with many men caregivers, assuming the traditional view of providenciadores income for the family, feel the financial impact associated with more care.

No correlation was found between age and size of Rating Scale Informal Caregiver, in virtue of this scale is a little used, no studies were found that relate the variables described. There are similarities to that for the above hypothesis, there are no empirical studies that support or oppose the data found in this way is not possible to realize the fact that they have found a relationship between the education of caregivers and the dimensions of the Rating Scale.

When studying the relationship between the degree of kinship and the data obtained with the Rating Scale Informal Caregiver was not found statistically significant differences between the groups in question. However, Lage¹⁸ with a pooled sample into 3 groups (n = 46 Spouse, Children (s) n = 110 and other significant n = 58), found that there is at least one group that was statistically significant differences in subscale subjective burden (F = 3.42, p = 0.035). The fact that less stratified sample may be a factor in the fact that you have found this relationship and the same did not occur in our investigation. So it would be interesting to the reunification of the elements of our sample.

This study we highlight the limitations inherent in the nature of the choice of instruments, the most evident at this stage the investigator has to do with the Caregiver Assessment Scale, with only 13 items into three subscales, its discriminatory power is necessarily small compared other more complex and complete. However, bearing in mind the likely age of Informal Caregivers of population under study, the simplicity of language and fill factors prevailed as to choose that scale. Other limitations related to the instrument, can be pointed to the amount of items on sociodemographic characteristics in the phase of analysis and discussion of the results demonstrated no statistical value, items such as "type of housing - own house or rented house" eventually not be expressed in the research results. Thus, given the critical spirit and always unsatisfied with the researcher, there is still room for improvement, which is inconsistent with the need to comply with deadlines and time constraints of investigation.

For the difficulties encountered, the more significant is the access to the sample, being up to 32 elements, which was considered to match a minimum by the investigator, however, due to the fact of displacement of the users of Continuous Care Units by insufficient supply nationally, it becomes unaffordable for low-income informal caregivers make trips to visit his dependent. Other difficulties grappled with the availability of studies on long-term care, since this is a recent reality in our country, and this model is significantly different from other European countries in particular.

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