The health care landscape is undergoing a significant transformation with the advent of home care services; yet, unlike a regulated hospital or formal care setting, home care environments lack standardization in the design and implementation of technologies that support health information management and communication [1,2]. Effective health information sharing is essential for patient-centered care and shared decision-making to reduce the risk of adverse events [3-5]. Adverse events in the home are commonly associated with insufficient communication and coordination issues among family and hired caregivers [6-8]. In Canada and the United States, the proportion of people receiving home care who experience adverse events ranges from 4.2% to 13% [7,9].

With respect to home care for older adults, their health conditions and health information are often highly varied, their living environments are disparate and often involve diverse caregiver teams, and caregivers often attempt to implement nonelectronic systems to manage recordkeeping and information sharing [1,10,11]. The rapidly expanding digital world has left home care behind [12], which could be attributed to the sociotechnical complexities that make it challenging to design standardized technologies for this care environment [13-17]. These complexities must be addressed to ensure that all caregivers can access the benefits of digitalization and provide better care.

Prior work on the design and integration of digital technology for caregivers primarily focuses on the perspectives of family caregivers [12]. Researchers have examined family caregivers’ general needs for the design of home care technologies [18]; how family caregivers select and use assistive technologies [19,20]; the factors influencing family caregivers’ satisfaction with, or adoption of, technologies [21,22]; and design considerations to help family caregivers manage specific health care conditions [23,24]. Other researchers have more closely examined information management through family caregiver handoff processes in the home [25,26] and described how home care nurses desire a digital dashboard to support evidence-based care provision [17]; it has also been recommended to focus on quality improvement when adopting IT, along with addressing problems with information sharing, reducing excessive documentation, and providing training [15]. While recognizing the involvement of diverse care teams in complex home care, limited qualitative analyses have examined family and nonfamilial or hired caregivers [12]. There is also a need to establish a stronger contextual understanding of information management and communication experiences to inform technology design for complex home care environments [12].

People with complex home care needs include diverse individuals who typically experience any combination of chronic conditions, multimorbidity, mental health issues, polypharmacy, and social vulnerability [27-29]. They also face significant barriers to receiving optimized care in their homes [27-29].

A systematic review of home care for older adults in Canada identified that mobility issues, cognitive impairment or mental illness, and chronic conditions are typical characteristics of older adult home care recipients with greater impacts on their quality of life and need for caregiving support at home [2]; for example, older adults with mobility issues may restrict their physical activity due to a fear of falling, especially if they have fallen before, and may receive home-based rehabilitation [2]. Cognitive impairments such as Alzheimer disease and mental health illnesses such as depression or suicidal behaviors are often associated with an increased need for home care workers and family caregiver support [2]. Older adults living with disabilities and chronic illnesses such as hypertension, heart problems, diabetes, and arthritis have very high care needs [2]. Furthermore, among older Indigenous adults, the incidence of these conditions is 2 to 3 times higher than the average rate for older adults in Canada [2].

With an increasingly aging population [30], the proportion of people requiring complex home care is also growing; for example, in Ontario, Canada, it is projected that, by 2040, the number of older adults (aged ≥80 years) will more than double, with 1 in 5 having complex care needs [30]. While the ongoing COVID-19 pandemic adds new challenges with individuals already managing complex home care [31,32], it also contributes to new complex care needs of individuals experiencing postacute sequelae of SARS-CoV-2 infection and other long-term health impacts from reinfection [33-35].

The rise in the number of people needing complex care at home has increased the demand for caregivers. Caregivers of people with long-term home care needs are often unpaid family members who work 20 to 40 hours per week providing care [36]. Approximately 75% of caregivers in Ontario have expressed worries about managing their caregiving duties, and 42.1% report feeling distressed [36,37]. To supplement and support the work of family caregivers, approximately 20 million caregiving visits or home care support services are purchased annually from service provider organizations to help individuals remain in their homes when receiving care [38].

While family caregivers are critical, it is important to remember that complex home care often requires communication across caregiver teams, including hired caregivers (in this study, hired caregivers refers to individuals such as personal support workers [PSWs] and home care nurses). Indeed, Wolff et al [39] describe the significant potential for health IT to support stronger partnerships between family caregivers and health care workers. Moreover, Lindeman et al [12] highlight key research needs in addressing the design and use of technology to support health documentation and information exchange among caregivers. There are significant gaps in existing literature informing the design of complex home care technologies that considers family and hired caregiver experiences and the integration of future technologies for health information management and communication [12].

The objectives of this study are twofold: to explore (1) the health documentation experiences of family and hired caregivers and (2) their experiences with health communication with other caregivers in the context of their respective home care environments. The results from this work provide insight into potential users’ personal, physical, and social care environments, which is a critical foundational step in informing the design and adoption of new technologies for complex home care [40,41].

This research is part of a larger interview study about the perspectives of caregivers across North America regarding health IT development to support information management and communication in complex home care [42,43]. The first part of this research focused on caregivers’ experiences—1 study focused on family caregivers of children with special health care needs [42], while the results reported in this study focused on family and hired caregivers of older adults. The second part of this larger study explored caregivers’ expectations regarding using voice assistants to interface with health care information in the home [43].

Despite their functional differences and the unique training and education that hired caregivers have, both family and hired caregivers were included in this study because of their complementary roles and the critical need to capture unique perspectives from a holistic approach, including physical, emotional, and social dimensions of home care. We also recognize the expertise of the family caregiver. Therefore, we use the term “caregiver” in this study to encompass family and hired caregivers and have noted when hired caregiver participants were home care nurses or PSWs.

A research ethics board at the University of Waterloo reviewed and granted ethics clearance for the study (42179). All participants were interviewed virtually from their homes due to COVID-19–related protection measures in place. Per the ethics approval, and given that this study involved minimal risk to participants, informed consent was obtained verbally. Participant data were stored electronically on a password-protected account that only the research team could access, deidentified, and referred to only by a participant code (eg, participant 1). Participants were not remunerated for their participation. Each participant received a thank-you letter after the interview.

Participants were eligible if they were aged at least 18 years and either a family caregiver or a hired caregiver for an older adult (aged ≥65 years) who required complex care services in their home anywhere in North America. Complex care refers to the care of individuals who need care services for any combination of chronic conditions, mental health issues, medication-related problems, and social vulnerability. In this study, a family caregiver was one who provided or coordinated care for a family member, a partner, or a friend; they assisted this person with health- or medical-related tasks in their home. A hired caregiver, who was not a family member of the care receiver, was a home care nurse, PSW, or other caregiver employed to provide home care services to an older adult.

Recruitment was supported by disseminating study materials through various nonprofit, for-profit, and public home health care agencies, as well as caregiver support agencies, including Home Care Ontario and other caregiver networks and organizations in Ontario, with which eligible participants may be associated. We also disseminated recruitment materials within groups on social media platforms, including Reddit, Facebook, and Twitter (subsequently rebranded X), that were created for family caregivers, PSWs, and nurses. We followed up with snowball sampling, where participants were asked to share the study poster with other potential participants at the end of their interviews.

One researcher (RT) developed the interview guide, guided by the cognitive work analysis framework and the storytelling principles of narrative medicine to enhance knowledge [44,45], which was reviewed and iterated by 2 researchers (CM and KM; Textbox 1). Two researchers (RT and KM) conducted semistructured interviews with each eligible participant who contacted us about participating in the study. During the interview, the participants were asked about their home care environment, their experiences of providing care, and their coordination experiences with other caregivers. Hired caregivers were asked to speak about their recent work experiences with a client or comment in general terms about their experiences. The interviews were recorded using Microsoft Teams, and only the audio recordings were used for transcription.

The interview data were stored and organized using NVivo 12 (Lumivero) and Excel 2021 (Microsoft Corp) and analyzed inductively to construct themes [46]. The analysis process involved the following steps: (1) Microsoft Stream’s closed captions feature was used to transcribe the audio recordings; (2) 2 researchers (RT and SA) reviewed and deidentified the transcripts; (3) 2 researchers (RT and SA) listened to the interview recordings and read through the transcripts to familiarize themselves with the data; (4) all interview data were thematically coded using process and open coding to identify patterns and meaning within the transcripts, and the researchers (RT and SA) regularly discussed the codes and their organization [47]; (5) the developed codes from 1 family caregiver transcript and 1 hired caregiver transcript were applied to each interview, with new codes developed as needed; and (6) the codes were grouped to construct themes that were reviewed and refined by the entire research team. Disagreements were first resolved through discussion between RT and SA; otherwise, another research member (KM) was involved. Interviews were continued until code saturation was reached within the entire data set when no new codes were identified [48].

The research team has prior experience providing care for older adults, which may have introduced a bias during the study. These potential effects were mitigated by using 2 researchers (RT and KM) to conduct the interviews, using 2 researchers (RT and SA) during the coding and theme-forming process to challenge any emerging preconceptions and support the reliability of the analysis, and seeking feedback on the preliminary findings from the entire research team. After each interview, the researchers (RT and KM) also conducted a debriefing session to discuss the content, reflect on the participants’ experiences, and make notes.

The participants were aged 24 to 83 years, and they cared for various older adult clients and family members (Table 1). Most of the family caregivers (6/9, 67%) provided care to a spouse, while others cared for parents (1/9, 11%), grandparents (1/9, 11%), and siblings (1/9, 11%). Of the 6 hired caregiver participants, 4 (67%) were PSWs, and 2 (33%) were home care nurses. The participants provided home care for durations ranging from 4 months to 13 years. The average time spent providing care across all participants was approximately 5 (SD 3.7) years. Participants generally described caregiving activities for individuals and loved ones with mobility issues, cognitive needs, illnesses, and wound care needs.

The codes were arranged into 3 main themes that describe the nuanced factors involving technologies, interactions, and tasks essential for health information management and communication in the complex home care environment for older adults (Figure 1; Table 2): (1) updating the caregiver team (binder-based health documentation, digital health documentation, and communication practices beyond the binder), (2) learning to improve care and decision-making (developing expertise as a family caregiver and tailoring expertise as a hired caregiver), and (3) conflicts within caregiver teams (2-way communication and trusting the caregiver team).

Many of the codes overlapped between family and hired caregivers within the overarching themes of updating the caregiver team and learning to improve care and decision-making (Table 2). There was a reliance on binder-based health documentation, which was a physical burden for some, and there was a desire for digitalizing home care information for everyone involved, while highlighting the importance of capturing holistic care information. Family and hired caregiver participants developed communication and documentation practices beyond the binder by keeping personal notes to support safer home care, managing information exchange with other caregivers via calling and texting, leaving colocated notes as reminders, and handing off information to other caregivers. They also learned from each other but had different learning needs. Their experiences diverged more prominently in their conflicts regarding information communication, coordination, and control stemming from a lack of 2-way communication, the impacts of the COVID-19 pandemic, and trust issues. The experiences relating to the similarities and differences between family and hired caregiver roles are further explained in the following subsections.

This theme captured the ways in which health information was shared between family and hired caregivers involved in the home, including their communication motivations and intentions. While all participants in this study discussed updating the caregiver team with pertinent health information about an older adult’s care, their methods and reasons for communicating information varied, depending on the context of their home care situation and their caregiving role as a family or hired caregiver.

This theme captured how caregivers acted on information from various sources to provide care. Family and hired caregivers in this study continually learned about their patient’s conditions and the nuances of the home care situation to improve the quality of the care they provided and support their decision-making.

This theme captured the struggles and breakdowns in communication and coordination among caregivers, which often impacted care continuity and increased their frustration and lack of trust in each other. These conflicts stemmed from unclear roles and responsibilities as well as communication and coordination issues.

This study captured the health documentation and communication experiences of family and hired caregivers in complex home care settings. Most of the participants (13/15, 87%) in this study were women, who often experience higher caregiving burdens and stress [49], aligning with the Canadian literature and 2022 Statistics Canada data that found women to be more likely to be care providers in the home than men [2,50]. The results also identify the overlap in caregiving experiences among the participants regarding how they were updating the caregiver team with new information about the person receiving care and learning to improve care and decision-making through information obtained from caregivers and by other means. In addition, the results identify disparate experiences with respect to conflicts within caregiver teams when communicating health information and coordinating care responsibilities. The insights gained from this study can inform design requirements for technologies that can meet family and hired caregiver needs with respect to supporting team-based caregiving, considering the sociotechnical complexities of this work domain. Understanding caregivers’ experiences within this complex domain is essential to launch such technology development effectively [51].

Although the caregiving situations discussed in this study were complex, the participants described overlapping experiences within the first and second overarching themes and disparate experiences in the third. Technologies designed to keep caregiver teams updated and support learning and decision-making, while alleviating potential communication conflicts, could help both family and hired caregivers. A growing body of research describes the importance of including family caregivers as collaborators for home care and bridging their contributions to home care with hired caregivers [13,25,52]. Much of the current literature on home care technologies focuses on either family caregivers [18-26] or home care workers [15-17] when examining design and development. Our study builds on this work by highlighting the potential overlap in design needs and user requirements between these caregiver roles.

First, hired caregivers are often required to manually document their care delivery for the agencies that employ them. As we found in our study, some hired caregivers have access to electronic documentation systems that are not accessible to family caregivers, or they use paper-based systems to communicate information to other caregivers. Family caregivers may develop their own paper-based recordkeeping systems that they ask their caregivers to fill out, which can create a documentation burden for others in the caregiver team. Despite the need to involve family caregivers in digital technology design and the growing literature on family caregivers’ technology needs and experiences [18,19,22,23,25], caregiving documentation research focuses on hired caregivers [17,53-55], likely due to organizational and institutional requirements. Our study identifies that health information generated by family caregivers is important for safety in a home care environment, and future technologies should find accessible ways to include all caregivers to effectively communicate and share documented health information.

Second, given the communication challenges that caregivers described in this study, where family caregivers were concerned with ensuring that hired caregivers understood the nuances of how to safely care for their loved one in the context of their home, both desired to learn from caregivers and other health information. There is a need to combine the findings from the existing body of literature to build technologies that can address these systems-level needs and support coordinated care; for example, to support handoffs, potential technologies may provide value by efficiently gathering health information from users and intelligently transforming it into situational summaries through the use of large language models [56]. As it is vital to recognize family caregivers as important individuals in documenting the care of their loved one [57] and alleviate the high burdens that family and hired caregivers often face [58,59], automating this aspect of health information and communication could provide significant benefits to all caregivers.

Third, by examining the perspectives of family and hired caregivers and how their work intersects, our study identifies some of the ways in which established literature highlighting only a single caregiving perspective can be enhanced to support caregiver teams; for example, within our third theme regarding communication conflicts, we found examples of the lack of fundamental 2-way communication between caregivers, resulting in uncertainty about whether other caregivers received and understood the information shared, along with challenges related to understanding caregivers’ communication roles and responsibilities. Other research on family caregivers recommends that digital systems include secure messaging, customization, shared calendars, checklists, medication lists, and knowledge about the patient’s condition [25]. Our study highlights the importance of considering the work experience perspectives of family and hired caregivers working together. This suggests that technology design should include features that allow caregivers to confirm whether others in the caregiver team have understood shared health information across functionalities to reduce uncertainties in their caregiving tasks; in addition, the ability to share nuanced home environment details could foster trust within the caregiver team.

Other family caregiver–centered research recommends that IT should put the family caregiver in control [24]. While this is critical for situations led by a family caregiver, when multiple types of caregivers are involved, these technologies should consider all caregiving users’ needs [18], such as the needs of hired caregivers. Hired caregivers have a need for control over health documentation processes—likely due to their training, experiences, and their home care agency’s needs—and for setting appropriate communication boundaries with family caregivers because they often provide care for multiple people. Technology design could play an important role in hired caregivers’ relationships with family caregivers and perceived levels of control. Going forward, a design recommendation may include integrating caregiver profiles to support formalizing roles and care coordination responsibilities in the home.

As also indicated in prior work [17,18,23], there is agreement on the need to digitalize health information management and communication processes to support family and hired caregivers; yet, there are no standardized systems that support all caregivers. One of the challenges of building technologies for older adults’ home care environments identified across this study may be the reliance on paper-based records by home health care systems [24], where issues with the ease of use and ease of integration may prevent adoption over the status quo [21]. It is important to highlight that the participants in this study described how paper-based records supported health information documentation and provided an acceptable and effective method for sharing information with other caregivers. Unfortunately, paper-based records inherently lack functionality for real-time 2-way communication; may not support caregivers adapting to change in a fast-paced, dynamic home environment; and may be limited in supporting cognitive work demands across homes due to nonstandard designs [60-62].

As complex home care continues to evolve and family caregivers take on increasingly critical roles and responsibilities that require quick access to information and clearer communication, paper-based communication tools may not be a sufficient information management strategy [63] or a resilient technology during a pandemic. Existing research shows that digital personal health records for home care are perceived as useful in replacing a paper-based system because they keep relevant information in a single location, save physical space [24,25,64], and support information access on ubiquitous technologies such as smartphones and PCs [21]. The successful implementation of new technologies for caregivers of older adults, which would enable them to share information with others in the caregiver team without a physical documentation burden, review health information documented by others in the caregiver team to stay updated on the status of care, and reduce conflicts resulting from poor communication tools, hinges on maximizing the ease of use and satisfaction [21,53,65,66] and minimizing implementation burdens. More research is needed to identify technology designs and implementation strategies for complex home care that address these overarching needs to support the efficacy of care tasks, caregiver engagement, and system-level adoption among all caregivers.

To the best of our knowledge, this is one of the first studies that combines the perspectives of family and hired caregivers and their experiences regarding health information management and communication in the context of complex home care during the ongoing COVID-19 pandemic. The interview data captured rich details about the participants’ experiences and how they work with others in the caregiver team, providing insight that can guide the future development of digital technologies that support caregiving of older adults. Our findings support the need for future research to combine these work experience perspectives when developing design requirements based on user needs for complex home care.

The limitations of our study include the concentrated sample of participants from Ontario; the results may not apply to other Canadian provinces and territories or other countries. In addition, the majority of the participants (13/15, 87%) were women, and the sample size for the hired caregivers was limited. We also did not explicitly ask participants about their client’s or loved one’s specific conditions, diseases, or syndromes; however, some participants shared this information, which we have included in the Results section. One participant’s interview transcript data were unavailable for coding or presentation as anonymous quotes because they did not grant permission for their interview to be audio recorded; hence, the data were captured in detailed written notes for the analysis. While we reached code saturation in our analysis, future studies could expand on this work by recruiting caregiver team focus groups, which could contribute further insights into care coordination and communication in this complex care domain.

This study highlights the overlapping experiences of family and hired caregivers and the challenges they face when communicating health information and coordinating care responsibilities in complex home care settings. The results suggest the need for digitalized solutions that better support caregiver coordination and ease information sharing to consider how design requirements and user needs from 1 caregiving role overlap with those of other caregivers while addressing disparate communication challenges. Going forward, future research should involve the experiences of family and hired caregivers working together in the design and development of such technologies. By addressing these challenges and leveraging the insights from this study, we can improve the quality of care provided to those who need it most and support caregivers in their vital roles.