Uncertainty in illness in family caregivers of palliative care patients and associated factors

Objective to describe the level of uncertainty in illness in family caregivers of palliative care patients and detect associations between the profile of the caregiver and the levels of uncertainty. Method descriptive correlational study conducted with 300 family caregivers of hospitalized patients. The sociodemographic characterization of caregiver and patient was used to assess the caregiver profile, as well as the Uncertainty in Illness scale for family caregivers. Spearman’s Rho correlation test was applied to detect associations. Results the average score of illness uncertainty was 91.7 points. The analysis showed significant correlations between the level of uncertainty and patient dependence (r=0.18, p=0.001), symptom assessment (r=0.312, p<0.001), length of service as a caregiver (r=0.131, p=0.023), perception of support from health professionals (r=-0.16, p=0.048), family (r=-0.145, p=0.012) and religious support (r=-0.131, p=0.050). Conclusions there were high levels of uncertainty in caregivers about their patient’s illness. These levels are associated with the health condition and symptoms of the patient who is cared for, the length of service as a caregiver and the perceived support from health professionals, family and religion.


Introduction
Chronic Noncommunicable Diseases (CNCD) are a global public health problem that affect both developed and developing countries (1) . As CNCD and demands for care increase, the need for specialized care, such as palliative care (PC) also increases (2) .
People with CNCD, as their disease progresses and they approach the end of their life, they need to make lifestyle changes and restructure their lives to adjust to new conditions, which generate increasingly dependency and deterioration (3) . For a person to make this adjustment, in many cases it requires the support of a family caregiver, who takes on the role of accompaniment, direct care, health management, among other activities (4) . Often, when assuming this role, there is a lack of knowledge of basic aspects related to the diagnosis of the patients, their type of treatment, their prognosis, as well as the care for the patient (5)(6) . Taking on these tasks without the necessary knowledge brings feelings of overload, anxiety, stress, physical problems and decreased quality of life (7) .
In 1988, Merle Mishel theorized that the lack of knowledge of the issues related to the illness leads the person to experience a state of uncertainty, which she described in her theory on Uncertainty in Illness, a theory that can be applied to patients, caregivers and parents of children (8) . For this author, uncertainty in illness refers to the inability to determine the meaning illness related events due to insufficient signals to do so (8) . In other words, uncertainty arises in response to ambiguous illness related events due to insufficient information, unpredictable or changing symptoms, ambiguous disease trajectory, insufficient social support, inadequate support from health professionals and the cognitive abilities to understand the development of the disease (9) .
Regarding the CNCD, some studies have reported that the high levels of illness uncertainty experienced by caregivers are associated with aspects such as decreased ability to learn and understand novel information (10) , inability to predict the results of events presented by the patient, adapt to the diagnosis of the disease and low levels of quality of life (11)(12) . Despite the evidence on the phenomenon of uncertainty in CNCD, such as cancer and other pathologies, it is important to understand that the application of this nursing theory in the field of PC provides tools for nursing professionals to understand and help the family caregiver who experiences uncertainty in illness of the patient. In addition, the usefulness of its application can be demonstrated in another context of care, to which it has not yet been used and, thus, new disciplinary knowledge is produced with respect to this theory.
For nursing professionals, recognizing the level of uncertainty of these caregivers and the factors that may be associated with it, allows nursing interventions focused on the aspects that generate caregiver uncertainty, which will result in the improvement of patient care. In view of the above, it is important to describe the level of uncertainty in illness in family caregivers of patients in PC and detect associations between the profile of these family caregivers and the levels of uncertainty they may have.

Method
This is a descriptive cross-sectional study. This   (13) . The card is divided into three sections:  To measure the uncertainty, the Uncertainty in Illness Scale for Family Caregivers was used, which was designed to measure the uncertainty experienced by a caregiver about the patient's illness (15) . This instrument has 31 items with a Likert type response scale that ranges from strongly agree (5 points to the author, a low illness uncertainty score is that below 59 points, medium from 59 to 87 points and high that above 87 points. The scale shows construct validity in its original version and internal consistency for caregivers of patients with different chronic diseases, and its alpha coefficient can vary from 0.64 to 0.89 in each dimension (15) . In its version in Spanish, the scale was adapted and validated for a study of parent caregivers of children, showing a construct validity with 3 factors and an internal consistency with a Cronbach's alpha of 0.86 (16) . It was also validated for caregivers of people in palliative care, with an internal consistency of 0.79.
The data was analyzed using the SPSS 20.0 ® statistical program for Windows. The continuous variables were expressed as mean and standard deviation, and the qualitative variables as frequencies.
To detect correlations between the variables, the Kolmogorov Smirnov test for normality was used.
Pearson's R correlation test was applied for those variables that met the requirements of normality and Spearman's Rho test was used for those that did not meet. The statistical significance was set as p < 0.05, and for the interpretation of the correlations obtained the p value was set as: < 0.3 weak magnitude, ≥ 0.3 to < 0.6 moderate magnitude and ≥ 0.6 strong magnitude (17) .

Results
During the study period, 323 family caregivers who met the inclusion criteria were invited to participate in the study. Of these, 300 agreed to participate in the study. The results are shown below.
Regarding the profile of the family caregiver, in terms of sociodemographic characteristics, it was found an average age of 50. 17   The detailed aspects of the characteristics of the role of the caregiver of a patient in PC are described in Table 1.
The level of well-being and perception of support by the caregiver of a patient in PC are described in Table 2.

Discussion
This study aimed to describe the uncertainty in illness in caregivers of patients in PC and to detect associations between the profile of these family caregivers and their levels of illness uncertainty.
Regarding the level of uncertainty in caregivers about the patient's illness, a high level of uncertainty was found in this group of participants. In this regard, the literature reports that the levels of illness uncertainty in caregivers of patients with stroke were medium levels (18) . Another study conducted by the same researchers (19) found a medium level of illness uncertainty in caregivers of patients with neurological impairment, and low to medium levels were found in a study in pediatric patients and their caregivers (20) .
In contrast with other studies, the data in this study show a first important finding, that is, the level of Regarding the other characteristics in the caregiver profile, this study found a positive association between the level of uncertainty and the length of service as a caregiver, this finding is interesting compared to the results of a study in caregivers of patients with bowel cancer, which found that the level of uncertainty remained stable during one-year follow-up (22) . Regarding this finding, some studies (23)  in other populations (24) but not in the context of PC. For instance, several authors (25)(26)  Finally, the findings of this study report the importance of religious or spiritual environments and family support at the end of life. In this sense, a negative association was found between uncertainty and family support and religious support. As other authors have described (27)(28) , should be carefully observed since the issues addressed stems from various variables, which sometimes can not be measured in their entirety in the participants (29) . Another weakness of the study is related to the selection of the study participants, since an intentional sampling method was used, which did not allow a random assignment of the characteristics of the participants and this could introduce biases in the study results.

Conclusion
Caring for a patient in palliative care is a complex situation that poses a challenge for the family caregiver.
The results of this study show high levels of uncertainty in illness in family caregivers of patients in PC. In addition, these levels of uncertainty are associated, in a slight but significant way, with the condition of the patient who is cared for and the symptoms presented by him, the length of service as a caregiver and the support that the caregiver perceives coming from health professionals, family and religion. These findings provide evidence on the importance of the nursing professional in identifying the needs and assisting the family caregiver of the patient in PC; the strengthening of the family support network of this patient-caregiver dyad; and the need to recognize the value of religious or spiritual support groups. All this to avoid the appearance or to modulate the uncertainty in caregivers about the patient's illness and to improve the health care provided to this population.