Abstract
Family caregiving is instrumental for avoiding or delaying admission to skilled nursing or similar facilities. 1 Several studies in eldercare have investigated families’ involvement in care as well as the effects of care provision on both patients’ and families’ health and quality of life.2-4 Research shows that approximately 30% of US families provide care to disabled or elderly families or friends. 5 Care at home is the preferred environment for enhancing the total bio- psycho-social well-being of the patient. A trend in smaller family size has reduced numbers of family members available for family caregiving 6 and has increased demands for paid personal aides.
Respite care provided by personal aides reduces depressive symptoms and improves intergenerational relations and the overall well-being of family caregivers and of patients. 7 Yet, little is known about how families evaluate personal aides prior to their employment and during the employment period. 8 Families are also likely to become concerned about potential risks to patients’ safety when a stranger, such as a personal aide, enters their homes. Research on home care quality underscored that emotional aspects of interpersonal relationships were important in assessing quality of in-home care and trust of personal aides. 9 We define trust as the reliance on the integrity, competence, and character of each member in the relationship. We explored the phenomenon of families’ stress before hiring and after including a personal aide in the home caregiving environment.
Methods
University Institutional Review Board approval was granted for a pilot study on home-based care. Criteria for inclusion in the study were a minimum age of 40 years for family members, a minimum age of 65 years for the patient, and a minimum of 6 months providing home-based care. The first author used a semistructured interview guide to interview 10 families. Families’ ages ranged from 43 to 70 years. Patients’ ages ranged from 67 to 86 years. Although, not a selection criterion in the research design, all white families had hired white personal aides and all black families had hired black personal aides. No other racial or ethnic groups were included. All interviews were audio-recorded and transcribed verbatim prior to analysis. Both authors engaged in the coding of data as an iterative process. An overarching theme of trustworthiness was identified with subthemes of initial assessment and continual monitoring.
Findings
Families emphasized the importance of knowledge of the personal aide before hiring or trust in referral resources as informing the initial assessment of personal aides’ trustworthiness. Other concerns of families include protection of their loved ones against risks from dishonest, unethical, or incompetent personal aides and unsafe, uncomfortable caregiving contexts. After families hired a personal aide that they presumed to be trustworthy, monitoring was a nearly endless task in seeking assurance that their initial assessment was accurate (see Table 1). Table 1 provides a list of both initial assessment requirements and questions families used for continued monitoring.
Initial Assessment Questions Used Prior to Hiring a Personal Aide and Questions Families Use to Monitor a Personal Aide After Hiring
Initial Assessment of Trustworthiness
Selection of personal aides occurred primarily through referrals from other families and friends, through the patients’ physicians, and through in-home services such as hospice. In particular, recommendations from other families who had hired and worked with the aides were considered the most desirable method of referral.
The important roles that primary physicians and other formal health care providers occupy often go beyond routine provision of medical care. Although it was not as common for primary physicians to recommend a particular personal aide, the level of trust and open candor between physicians, their patients, and the patients’ families greatly influenced decisions to use personal aides in the home caregiving environment. In cases of hospice use, the hospice provider was seen as a trusted recommender for personal aides and was asked to provide a list of personal aides previously hired by other families who had used hospice service. The combined reputation of the referral agent and of the aide for being personable, kind, and considerate was critical to the families’ positive assessment that the candidate could be trusted and would meet the needs of the patient in a much broader context than simply having formal training as a care provider.
Continued Monitoring for Trustworthiness
An ongoing assessment of trust was essential. Even when families’ initial impressions before hiring were that the personal aide was trustworthy, monitoring of trustworthiness continued throughout the employment period. Families monitored personal aides’ behavioral intentions rather than focusing only on the aides’ caregiving knowledge and skills. Families reported that their perceptions of aides’ level of compassion were more important determinates of trustworthiness than was technical acumen. Families’ feelings of trustworthiness were enhanced by personal aides’ moral commitment and interpersonal competence for creating a secure, high quality caregiving setting. When a trusting relationship with an aide was established, families and patients redefined that relationship using terms of mutual love and affection. Similarly, increased trust provided satisfaction and emotional security for both families and patients. Families stressed that the personal relationship between the aide and the patient was the most important characteristic for continued employment of the aide. A positive personal relationship was translated into a trusting relationship.
Families and patients sometimes faced challenges in building strong and trusting relationships with new personal aides. These cautious relationships were characterized as “watchful waiting” with each party establishing the parameters of the relationships. The families carefully monitored how the aide interacted with the patient as well as how comfortable the patient was in the relationship. When an aide did not provide emotional and psychological relief to families as expected, when families suspected that an aide financially exploited the patient, or when an aide neglected the patient, families lost trust in that aide, became distressed, and terminated the aide’s employment. Transgressions by one aide resulted in a dramatic decrease in the trust of all personal aides and increased families’ stress so that scrutiny of other personal aides was conducted with skepticism and distrust. Loss of trust decreased quality of life for patients and their families and added an additional layer of stress in the form of nearly constant monitoring and worry.
Conclusions
Our findings suggest that when a personal aide is added to the home caregiving environment there is increased stress on families in the form of ever-vigilant assessments of trustworthiness. Moreover, the stress was dramatically increased when trustworthiness was not readily apparent. Assessments of trustworthiness changed over time, increasing or decreasing, through observations of personal aides’ actions. Appropriate care, according to families, went far beyond actions required to competently administer medicines, assist with activities of daily living, or maintain a watchful presence in the home. While positive experiences with personal aides greatly relieved stress and added to the quality of life for both families and patients when trustworthiness was established, quite the opposite was found when trust was violated. Personal relations, interpersonal communication skills, and affection between the aide and the patient were much more important than were standard caregiving skills. With the established trust in a personal aide, families often delayed or eliminated entirely the need for institutional care.
Recommendations
Primary Care Providers
Because the relationship between primary care providers and their patients is one of trust, we suggest that primary care providers engage more directly in assisting families seeking a reputable personal aide. Toward achieving that goal, we suggest the establishment of a database containing personal aides’ names and contact information. This information could be gathered by front office staff as a routine question included on an intake form. Patients who had hired personal aides could be asked to rank the personal aide using a simple 5-point scale. Once those data are entered, a list of possible aides could be generated. A disclaimer could be included regarding endorsement and it could be stressed that the list is simply a courtesy offered by the primary care provider. By generating a list such as described here, patients and their families would have a stronger starting point for selecting a personal aide. Table 2 is provided as an example of the addition to the intake form.
Suggested Additions to Primary Care Providers’ Intake Form
Personal Care Aides
The primary training for personal aides involves knowledge of basic skills associated with activities of daily living such as feeding, dressing, bathing, and administering medications. In addition to these, training facilities could include a stronger emphasis on social skills and interpersonal communication. With the addition of personal skills training, it is likely that the current high turnover in personal aides’ employment would decrease and more patients could remain in their homes.
Families
We suggest that families considering adding a personal aide to the home-based caregiving environment ask the following: (1) Is the personal aide known by trusted others? (2) What have been others’ experiences with this personal aide? (3) Are the personalities of patient and personal aide compatible? and finally, (4) Who will monitor the aide and how will the monitoring be performed? This study shows the significance of looking beyond competence in caregiving.
Limitations
The sample size is small and limited to black and white families in 1 urban southeastern region of the United States. Personal aides were gender and race/ethnicity matched with patients. Therefore, it was not possible to address gender, ethnic, or racial diversity, and we are constrained in our ability to generalize beyond the sample. In spite of these limitations, we provide a valuable starting point in understanding primary care providers’ roles and families’ considerations when including a personal aide in home-based care.
Footnotes
The authors declared no potential conflicts of interests with respect to the authorship and/or publication of this article.
The authors received no financial support for the research and/or authorship of this article.