Needs of family caregivers in home care for older adults 1

ABSTRACT Objective: to reveal the felt and normative needs of primary family caregivers when providing instrumental support to older adults enrolled in a Home Care Program in a Primary Health Service in the South of Brazil. Methods: using Bradshaw's taxonomy of needs to explore the caregiver's felt needs (stated needs) and normative needs (defined by professionals), a mixed exploratory study was conducted in three steps: Descriptive quantitative phase with 39 older adults and their caregiver, using a data sheet based on patient records; Qualitative exploratory phase that included 21 caregiver interviews, analyzed by content analysis; Systematic observation, using an observation guide with 16 caregivers, analyzed by descriptive statistics. Results: the felt needs were related to information about instrumental support activities and subjective aspects of care. Caregivers presented more normative needs related to medications care. Conclusion: understanding caregivers' needs allows nurses to plan interventions based on their particularities.

differences between two groups when comparing the rendering of a given service. An expressed need is a perceived need demanded by people seeking to use a service. A normative need is defined according to a norm or institutional criterion acknowledged by professionals.
Finally, a felt need represents individuals' desires and wishes and is limited by the perception of each subject (7) .
For this study, two categories from Bradshaw's taxonomy were used: the felt and normative. Therefore, the objective of this study was to reveal the felt and normative needs of primary family caregivers when providing instrumental support to older adults enrolled in a Home Care Program (HCP) in a Primary Health Service in the South of Brazil.

Study design
A mixed exploratory study was conducted in three

Sample
The study population comprised 55 older adults aged 60 years and over participating in the HCP and their primary family caregivers who were responsible for the care of the older adult. The sample varied according to each phase of the study.
In the descriptive quantitative phase, of the 55 participants, 39 older adults were intentionally selected with their caregivers, who complied with the inclusion criterion of having a primary family caregiver who performed some instrumental support activity related to personal care for the older adult, according to data obtained from patient records.
Of the 39 participants identified in the first phase, all were approached by phone and invited to participate in the second phase. However, 18

Ethical considerations
The study received approval from the institutional

Results
The Table 1 shows the characteristics of the older adults and their family caregivers.
www.eerp.usp.br/rlae Table 2 shows the instrumental support activities the primary family caregivers most frequently performed.  Table 3 shows the normative needs identified in the systematic observation.

Integration between felt and normative needs
With regard to the instrumental support activities performed, there was an agreement between the felt need for information and normative needs related to diaper changing and medications care, since some caregivers were found to have both concerns and normative needs with regard to these activities.
Conversely, other caregivers did not report information needs nor had normative needs regarding these activities and bed bathing.
Additionally, there were disagreements between the activities shower bathing, dressing, diaper changing, and medications care, because some caregivers did not report felt needs for information but did not carry out all the essential care procedures required for the appropriate performance of these activities.

Characteristics of participants
Mean age, educational level and income for older adults were higher in this study than in other national studies with dependent older adults and their family caregivers (11-12) , given that the South of Brazil is one of the most developed regions of the country. As expected, there was a greater proportion of women, in view of the feminization of aging. High dependence to perform instrumental support activities was similar to a study conducted in Northern Brazil with older adults in a HCP (13) . As in another Brazilian study, high blood pressure, stroke and dementia were the most frequent morbidities in older adults dependent on home care (13) .
In line with previous studies in Brazil, family caregivers were mainly middle-aged or older women who were daughters or wives living with the older adult (11,14) .
The instrumental support activities the caregivers more frequently performed were medications care and bathing, corroborating findings from a national study conducted with family caregivers and dependent older adults (15) .

Conversely, investigations carried out in developed
countries show that the instrumental support activities more frequently performed by family caregivers are transportation, accompanying to medical appointments, and care with household chores (16)(17)(18) . This divergence may be explained by the fact that there is a wider variety of support networks and health care professionals to help caregivers in the performance of more complex instrumental support activities in developed countries when compared to the Brazilian reality.

Instrumental Support Activity Normative needs
Bed bathing 1 Protect hands with rubber or disposable gloves.
2 Rinse with clean water and dry well (especially genital area, knee bends, elbows, under the breasts, armpits and toes).

Instrumental Support Activity Normative needs
Shower bathing 1 Attend to cleaning the genital area carefully. Clothes are easy to wear, comfortable and appropriate for the weather. 2 If the person has an affected arm, it is advised to place the affected arm in the first sleeve and take off clothes first with the non-affected arm. Ask if necessary.

Instrumental Support Activity Normative needs
Diaper changing 1 Wash hands before and after the changing.
2 Perform hygiene and dry thoroughly. 3 Change diaper in an appropriate place, preserving the privacy of the older adults.

Instrumental Support Activity Normative needs
Medications care 1 Keep medicines of continuous use separated and identify the packaging. 2 Keep the dressing items separated in a specific place.

Felt and normative needs
The interviews revealed felt needs for information and/or support for the subjective aspects of care, showing that, in addition to guidance and knowledge on how to perform instrumental support activities of older adult care, the emotional needs of family caregivers should also be considered. One of the issues, the role of the caregiver was also addressed in another Brazilian study (14) . Thus, inversion of role may cause a negative reaction in caregivers, who start to experience contradictory feelings, physical and emotional signs and symptoms, tiredness, and impossibility of performing their own activities because of the dedication to their older adult relative.
Studies conducted in developed countries analyzed information needs, such as access and use of support services and programs, legal and financial support, presence of a support network to help caregivers in caring for older adults safely (2,19) . These particularities may be explained by the existence of formal service networks and support programs directed to the care of dependent older adults in developed countries, where care is considered a responsibility not only of families, but also of the society and the state. Unfortunately, this is not a reality in developing countries like Brazil.
The availability of materials and/or devices to facilitate care was also reported as a challenge in the performance of instrumental support activities. The use of appropriate or adapted equipment for bathing was identified as a normative need. Thus, it is necessary not only to guide caregivers, but also to assess the household to identify factors that may contribute to the onset of difficulties in the performance of care.
Moreover, caregivers should be instructed on how to have access to this equipment, which the government does not usually offer.
Additionally, caregivers reported difficulties related to their own health issues. Caregiver health problems may be associated with sociodemographic factors, such as female gender, advanced age, degrees of older adult dependence, and lack of skills for the role (20)(21) .
Complete dedication to care and impaired social life were also difficulties identified by family caregivers in another Brazilian study (12) . Social inclusion should be promoted and facilitated by connecting the health services the caregivers visit with the existing social support networks (12) .
Regarding the activity medications care, most caregivers did not report felt needs for information because they received guidance from health care professionals linked to the PHCS. This finding differs from studies in Brazil in which caregivers have a need for information (2,22)  as the only provider of care of dependent older adults (23) .
The results will contribute to our understanding of the needs of family caregivers. Additionally, the findings will inform the development of nursing educational programs and interventions directed to their needs for them to be better prepared for this role.

Conclusions
The caregiver interviews enabled us to identify the felt needs of information for the practice of instrumental support activities. Furthermore, information and/ or support about the subjective aspects of care were identified.