Social support of adults and elderly with chronic kidney disease on dialysis

ABSTRACT Objective: to evaluate the instrumental and emotional social support of patients with chronic kidney disease on hemodialysis. Method: descriptive cross-sectional study. The sample was sized for convenience and included 103 participants under treatment in a Renal Replacement Therapy Unit. Data were collected through individual interviews, using the Social Support Scale. Results: the mean scores of the emotional and instrumental social support were 3.92 (± 0.78) and 3.81 (± 0.69) respectively, an indication of good support received. The most frequent sources of instrumental and emotional social support mentioned by participants were partners, spouse, companion or boyfriend and friends. Conclusion: patients with chronic kidney disease have high social support, both instrumental and emotional, and the main support comes from the family.


Introduction
Chronic Kidney Disease (CKD) is defined as a progressive and irreversible loss of kidney function, which is classified according to the glomerular filtration rate (1) . CKD is considered a public health problem worldwide (1)(2) . According to the latest census released by the Brazilian Society of Nephrology, it is estimated that in 2011, approximately 91,300 patients were on dialysis in Brazil, and the estimated number of patients who started treatment in 2010 was 18,972. Regarding the dialysis type, about 90% of the patients investigated in the 2010 Census were on hemodialysis in the various units that responded to the questionnaire (3) .
Despite major technological advances in the treatment of CKD and increased survival of these patients, none of the existing methods is curative. In other words, deal with the chronicity of the disease and the limitations imposed by the treatment is necessary for the patients on replacement therapy and has an important psychological impact for these individuals.
Hemodialysis, in particular, is responsible for a restricted daily routine since it imposes limitations on individuals affecting the biological, psychological and social aspects of their lives. This leads to a break in their lifestyle, causing the need to adapt to this new condition (4) .
Another aspect that seems to influence the outcome and quality of life of patients on hemodialysis is the perceived social support level. The first category refers to the availability of assistance from other people in the management or resolution of practical or operational situations of everyday life, such as the material and financial support or help with several dayto-day activities (6) .
In the literature, two categories of social support have prevailed: instrumental and/or emotional. The first category refers to the availability of the assistance of the others in the management or resolution of practical or operational situations of everyday life, such as the material and financial support or help with several dayto-day activities. The emotional support consists of behaviors such as listening, paying attention or keep company, which makes the person feel cared for and/ or estimated (7) . The social support network is a web of social relationships that each individual keeps, including the closest people, such as family and close friends (8) .
In view of the theoretical framework presented and the relative earliness of research, this study aims to produce knowledge on the social support of patients with chronic kidney disease on hemodialysis. The survey question that this study intends to answer is: What is the of social, instrumental and emotional support level of the patients with chronic kidney disease on hemodialysis?
In search of publications on the assessment of social support of patients with chronic kidney disease, using quantitative research tools, it was found only one study on renal transplant patients. There has been a lack of studies related to social support of patients with chronic kidney disease (9) .
It is believed that the assessment of social support of patients with chronic kidney disease on hemodialysis may serve to ensure that health professionals, especially and Clinical Characterization consists of questions regarding the identification (name, age, gender), demographic data (or self-declared, schooling, family income and religion) and clinical data (baseline diseases and willingness to undergo a kidney transplantation).

The Social Support Scale for People living with the
Human Immunodeficiency Virus (HIV) was developed in Canada (10) , validated for the Brazilian context, in 2006 (11) , and adapted for this study. It is worth mentioning that the only adjustment made in the instrument was on the instruction sheet, replacing the term "HIV positive" by "chronic kidney disease". A similar process was performed in a study of patients with heart failure (12) .
The scale assesses the perception of people on social support received and has 22 items or specific questions, 10 items related to the instrumental support and 12 items related to emotional support (13) . The  (10)(11)(12)(13)(14) .
For composition of the scale, the scores are calculated by the arithmetic mean of the values of the items corresponding to each factor (availability and satisfaction), so that these range from 1 to 5 for the emotional support and for the instrumental support. It was established that the higher the value, the greater the perceived availability and satisfaction with the support evaluated (15) .

Results
The study included 103 participants with an average age of 54.81 years, with a predominance of males (67.0%) and most patients had 1 to 8 years of study (54.4%). As for the monthly income, most (65.6%) received only a minimum wage (minimum wage in the period of data collection: R$ 724.00 per month). Catholicism was the predominant religion, n=64 (62.1%), and 59.2% were practicing Catholics (Table 1).  Table 2). Table 3 shows the results of social support perceived by patients with chronic kidney disease on hemodialysis.
The average score of the instrumental social support was Table 1 -(continuation) 3.81 (± 0.69), indicating a good availability of perceived support, considering that the score ranges from 1 to 5, and the higher the value, the better the social support.
It is worth mentioning that 45.6% of participants said they were satisfied about the availability of support in the management and resolution of operational issues of treatment or health care, practical activities of daily living and material and/or financial assistance.    (Table 3).

Discussion
The sample can be described in terms of the observed sociodemographic characteristics as composed predominantly of males. In addition, there were socioeconomic aspects such as having completed elementary school and the high prevalence of professionally inactive individuals, along with the incidence of hypertension as the main baseline disease for CKD (3,(16)(17)(18)(19) .
In the search of studies on social support to patients with chronic kidney disease, it was observed a lack of research using the Social Support Scale as the data collection instrument. The findings were comparable to those observed for HIV and Heart Failure, which showed similar results to this study, regarding the satisfaction with the emotional social support (16,20) .
The social support of patients with chronic kidney disease on hemodialysis, assessed by means of the Social Support Scale, had an average score of 3.92 for the emotional social support and 3.81 for the instrumental support. These results are very similar to those in the study, whose objective was to evaluate the social support of 85 outpatients with heart failure in the state of São Paulo, and the average score for the emotional social support was 3.8 and the average score for the instrumental support was 3.9. This shows that, although in different ways, patients with heart failure and CKD have a high level of social support, which is very important for the continuity of care (16) . in terms of self-care required (10)(11) .
Lower levels of social support were associated with increased risk of mortality and reduced adherence to treatment, particularly in relation to the duration of the dialysis session and weight gain, especially as regards the physical aspects (21) .
There is a significant association between the level of perceived social support and aspects of quality of life, such as the health functioning, socioeconomic aspects, spirituality and family relationships. Data shows the importance of considering the perception of social support when it comes to quality of life in patients with chronic kidney failure on hemodialysis (12) .