Caregiving Experiences with Health Information Management and Communication in Complex Home Care: Informing Technology Design for Caregivers of Older Adults

doi:10.21203/rs.3.rs-3311204/v1

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Research Article

Caregiving Experiences with Health Information Management and Communication in Complex Home Care: Informing Technology Design for Caregivers of Older Adults

https://doi.org/10.21203/rs.3.rs-3311204/v1

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Purpose: The objective of this study was to understand how caregivers manage and communicate health information for older adults who require complex home care, informing the design of new technologies to support patient safety in the home.

Methods: The research involved semi-structured interviews with 15 caregivers, including family and hired caregivers, in Ontario, Canada. An inductive analysis was used to develop themes.

Results: The findings described how participants were Updating the Caregiver Team to share health information in the home. Participants were also Learning to Improve Care & Decision-Making. However, sometimes participants experienced Conflicts within Caregiver Teams using current technologies, which may not fully meet their information management and communication needs.

Conclusion: This research highlights the difficulties of caring for older adults in complex home care situations and the challenges that family and hired caregivers face when managing health information and communication. Currently, paper-based technologies are used, but there is a growing interest in digital tools that can efficiently gather and transform health information to better support decision-making. Collaborative digital systems involving family caregivers as important care team members could improve information sharing and reduce conflicts. However, implementing new technologies in this context can be difficult, and successful adoption may require systems that improve the overall caregiving experience in complex environments. This study recommends integrating caregivers as collaborators and implementing two-way communication in digital systems to enhance caregiver satisfaction. Future research should delve deeper into these complexities and prioritize designing effective tools for this crucial caregiving domain.

Older Adult

Caregiver

Home Care

Qualitative

Technology

Design

Home care is rapidly changing our healthcare system. Unlike a regulated hospital, nursing home, or community-based long-term care setting, home-based caregivers provide care outside a less controlled environment [1, 2]. Complex care environments, where patients require care for complex medical needs, including chronic conditions, mental health issues, medication-related problems, and social vulnerability, increase patient safety risks, such as adverse events often due to ineffective communication and poor coordination among caregivers [3–5]. The proportion of home care patients in Canada and the United States of America who experience adverse events in their homes ranges between 4.2–13% [6, 7]. Sometimes the most trained healthcare professionals lack the expertise required in the most complicated home care situations, where health information management and communication are critical for safe care [8, 9].

In Ontario, Canada, the number of home care patients classified as complex was less than 40% in 2009/10 but rose to 70% in 2014/15 [10]. Family caregivers, on average, spend 20 hours per week caring for an older adult for approximately four years, and 20 million extra visits or services are purchased annually to support patient care in the home [11]. The rise in complex home care may be unsurprising due to increased costs at medical facilities and patient discharges with complex care regimens. There is also an increased prevalence of chronic conditions and the desire for independence in health management through innovations with information technologies that may reduce the risk of adverse events [1, 2, 12]. The ongoing impacts of the COVID-19 pandemic have likely also played a role in the home care landscape [13, 14], especially given the recent predictions of how many people may be living with the complexities of post-COVID symptoms [15]. However, the design and implementation of information technologies to support health information management among multiple caregivers remain a high-potential yet socio-technical challenge [16–20]. The human factors of complex home care may be a contributing element. Patient conditions and health information are highly varied; home environments are unique and involve diverse caregiver teams; caregivers often attempt to implement non-electronic record-keeping systems to manage data [1, 21, 22].

A study by Carnahan et al. [23] has identified the critical need for information support for older adults and their caregivers to promote greater health independence and safety in complex home care. Additional studies have highlighted the importance of using human factors methods in adjacent settings to inform technology design for caregiver information exchange [22, 24, 25]. Due to its human-systems approach, human factors provide a way for understanding the context of the working environment and its influence on individuals, their tasks, and the technologies they use to complete their tasks [26]. Studies using this approach have analyzed patient transitions from hospital to home care to identify information needs among individuals providing care and how the home environment influences where caregivers collect and organize health information [27, 28]. However, understanding family and hired caregivers’ experiences managing and communicating information within home care for older adults with complex healthcare needs is one of the main gaps in the current literature.

Only a few studies take a human factors perspective to develop an in-depth understanding of caregiver experiences which is critical to informing the design of technologies for this complex environment. Previous studies have focused on caregiver handoff processes in the home and primarily provide the family caregiver perspective or focus on the experiences of specific older adult demographics, such as dementia, where the caregiving is performed in congregate living environments [29–31]. There have been limited qualitative analyses looking at family caregiver and hired caregiver experiences managing and communicating health information in complex care situations in the home. Building evidence in this area is essential to design information technologies that can support effective, efficient, and satisfactory use of future technologies by multi-disciplinary stakeholders in this complex healthcare setting. With the diversity in the elements and interconnections between the tasks, technologies and individuals working in complex home care settings, understanding the human factors nuances of this system through qualitative methods is critical. This exploratory research provides a foundational understanding of caregivers’ current health information management and communication experiences. Insights into caregiving experiences for older adults with complex healthcare conditions offer guidance that may inform the design of new technologies to support patient safety in the home, an essential aspect of designing new human-system technologies.

2.1 Study Design

This research is part of a larger study to identify caregivers’ perspectives across North America about digital health information technology development to support information management and communication in complex home care. Formative research explored the experience of caregivers of children with special healthcare needs [24], and caregiver expectations for the use of voice assistants to interface with healthcare information in the home [25]. This paper presents the results of semi-structured interviews with caregivers of older adults about managing health information in complex home care. A University of Waterloo Research Ethics Committee reviewed and granted ethics clearance for the study. All participants were interviewed virtually from their homes due to COVID-19 restrictions. Informed consent was obtained verbally, and participants received a thank you letter for their participation.

2.2 Participants & Data Collection

Recruitment was carried out by contacting home health care and caregiver support agencies, contacting groups via email and social media platforms, and was followed up with snowball sampling. Participants were included if they were at least 18 years old and either a family caregiver or a hired caregiver for an older adult (65+) who required complex care services in their home in North America. Complex care included individuals who needed care services for any combination of chronic conditions, mental health issues, medication-related problems, and social vulnerability. In this study, a family caregiver was anyone who provided or coordinated care for a person who was a family member, a partner, or a friend; they assisted this person with health or medical-related tasks in their home. A hired caregiver was a home care nurse, personal support worker, or other caregiver employed to provide home care services. Two researchers (RT, KM) conducted the interviews. The interviews were recorded using Microsoft Teams, and only the audio recordings were used for transcription.

2.3 Data Analysis

The interview data were analyzed using an inductive thematic process to extract themes [32]. Data were stored and organized using QSR NVIVO 12 and Microsoft Excel 2021. The coding process involved the following steps: (1) Microsoft Stream’s closed-captions feature was used to transcribe the audio recordings; (2) two researchers reviewed and anonymized the transcripts; (3) the core research team listened to the interview recordings and read through the transcripts and field notes to familiarize themselves with the data; (4) the interview data and notes were thematically coded, and the core research team regularly discussed emerging themes; (5) the final list of codes and emerging themes were reviewed and refined by the entire research team.

The thematic analysis was organized by combining the data from each caregiver population while highlighting nuances between the caregiving roles. One participant’s interview transcript data was not available for coding or anonymous quotes because they did not grant permission for their interview to be audio-recorded; thus, the researcher captured detailed notes for use in the analysis. The sample of 15 caregiving experiences was deemed sufficient due to the exploratory nature of this research study, the breadth of participant age, and experiences from a geographically homogenous sample. The sample size was generally informed by adjacent research identifying meaningful themes in related caregiving contexts [29, 33–35]. Interviews were also continued until code saturation was reached within the combined dataset. Code saturation is commonly defined as the point in the analysis process when no new concepts are identified [36].

Participants’ ages ranged from 24–83, and they cared for various older adult clients and family members, including parents, spouses, and siblings (Table 1). The time the participants cared for an older adult ranged from four months to 13 years. The average time spent providing care across all participants was five years.

Table 1

Participant demographics and caregiving characteristics (N = 15)
Characteristics		Family Caregivers	Hired Caregivers
Number of Participants, n (%)		9 (60)	6 (40)
Age (years), n (%)
	18–24	1 (11)	0 (0)
	25–34	1 (11)	1 (17)
	35–44	0 (0)	2 (33)
	45–54	0 (0)	1 (17)
	55–64	1 (11)	1 (17)
	65–74	2 (22)	1 (17)
	75–84	4 (44)	0 (0)
Gender, n (%)
	Female	8 (89)	5 (83)
	Male	1 (11)	1 (17)
Caregiving Experience (years), n (%)
	0–5	6 (67)	4 (67)
	6–10	2 (22)	1 (17)
	11–15	1 (11)	1 (17)

Using multi-disciplinary thematic coding, the research team identified codes that were then arranged into three themes that describe the nuanced human factors with the technologies, interactions, and tasks that encompass health information management and communication in the environment of complex home care for older adults (Fig. 1, Table 2): (1) Updating the Caregiver Team, (2) Learning to Improve Care & Decision-Making, and (3) Conflicts within Caregiver Teams.

Table 2

Themes in communication and management of health information in complex home care for older adults
Themes	Codes
	Family Caregivers	Hired Caregivers
Updating the Caregiver Team
	• Physical documentation	• The burden of physical documentation
	• Keeping personal notes to support safety	• Keeping personal notes to support safety
	• Calling & Texting caregivers	• Calling & Texting caregivers
	• Leaving notes for caregivers	• Leaving notes around the home
	• Reminding caregivers	• Capturing holistic aspects
	• Ensuring awareness of the patient status	• Handing off care
	• Bringing information to doctors	• Concerns for information silos
	• Transparency of record-keeping
	• Managing medications
	• Desire to ease documentation
Learning to Improve Care & Decision-Making
	• Understanding medications & the health condition	• Having prior knowledge
	• Learning from caregivers & health care professionals	• Learning from caregivers
		• Learning through observation
		• Learning from the client
		• Reviewing documentation & health care records
Conflicts within Caregiver Teams
	• Impacting care continuity	• Establishing communication boundaries
	• Talking through tasks	• Coordinating with caregivers
	• Communicating health concerns with health care professionals	• Feelings of control over information sharing
	• Sharing the client’s perspective • Expressing concerns • Providing instructions • Planning together • Struggling to share information • Worrying about the quality of care • Watching caregivers

3.1 Updating the Caregiver Team

All participants in this study discussed updating the caregivers with pertinent health information about an older adult’s care. However, 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. Overall, every participant in this study described creating written notes kept in a central location in the home. For example, one family caregiver participant documented medications and recorded details about their spouse’s reactions:

[The hired caregivers] made written notes to all the people in their company that were coming to see [my spouse]… They would have written notes that they kept on top of the refrigerator. [..] I would keep some notes, and there were times when I would make detailed notes about [my spouse’s] reaction to the medication… I had times when I would write things down every day. (Participant 10, Family Caregiver)

While hired caregivers may have more structure to their in-home documentation, record-keeping by family caregiver participants fluctuated depending on the need for tracking information. One hired caregiver participant strongly expressed the need for paper-based records by caregivers of older adults in their homes:

In the home, it’s still very basic now, as much as you can roll your eyes with that… We find it’s also helpful because if every agency has their own electronic information, that’s great for keeping their records, but remember, there’s all these different people coming into the home. Sometimes you need an old-fashioned three-ring binder to keep everybody straight. (Participant 5, Hired Caregiver)

The importance of paper records was seen for its transparency of documentation and to have information stored in one location for the family caregiver, or any other caregiver, to review. However, while documenting health information was important in our participants’ complex home care experiences, there was a lack of tools to support documentation. For example, family caregiver participants sometimes designed their own detailed record-keeping forms to organize health information that others were required to use for documentation and communication during caregiver handoffs:

I just do a nice log sheet and [my hired caregivers] write down if [they] take [their] meds, did you have a bowel movement, [are they] sleeping or not? I’m pretty good at creating a form. They have to fill this in, and that’s how we communicate. One person comes, one person leaves, and they just look at the notes. (Participant 8, Family Caregiver)

One hired caregiver participant expressed that they were required to record every detail like the ones described by Participant 8 during their shifts at specific time intervals. This volume of needed paper-based documentation may be one of the most time-demanding aspects for hired caregiver participants to balance with providing physical care tasks. One hired caregiver participant commented on the compounding nature of this burden with the number of clients in their care:

If you work with ten people, you have to care for them, and you have to document whatever happens to these ten people. That is why the PSW job is so hard. (Participant 9, Hired Caregiver)

In some complex home care situations, digital methods were used to share information with other caregivers. When record-keeping was completed and transferred digitally, this information was used to update healthcare professionals about changes or updates in someone’s care. Other caregivers in a supervisory role on the team used this information to monitor the events during another caregiver’s shift. One hired caregiver participant who was also a nurse described an online system that they used to communicate with personal support workers (PSWs) in the home:

[The online system is] between the person who’s in the home as the PSW and the delegating nurse. I can go in to see that information through our system. There’s an additional link where I can log in and see how their night was. (Participant 5, Hired Caregiver)

The family caregiver participants in this study did not have access to or know how to use any potential technologies to see these details other than texting or leaving a voicemail. Systems like the one used by Participant 5 may provide opportunities for family caregivers to see health information updates without physically being in the home. Despite not having access, family caregiver participants who controlled the home care record-keeping were interested in developing digital documentation methods for their caregiver team but did not know how:

I would like to be able to make that easier for [other caregivers]. I don’t know how, but I understand that in some institutions, they do the record-keeping on computers. (P8, Family Caregiver)

The context for which caregivers documented information also varied depending on the severity of the patient’s conditions, such as monitoring for effects of a new medication and the caregiver’s record-keeping motivations. Family caregivers expressed that they were only documenting when they felt it was necessary to share progress updates or noticeable patterns with healthcare professionals. Hired caregiver participants strongly believed in updating others about the health of their clients, not only including their vitals but also the holistic picture of the patient as a critically important factor:

But what about that person? What about how they’re feeling that day? What they’re thinking that day? I get tired of reading documents that say, “changed the sheets, toileted them twice…” But how about asking them, “How do you really feel today? I don’t want to hear ‘good.’ I want to know how you really feel. What are your thoughts?” Like, really get into it and document that. None of this “oh, every day, same document” big deal. What’s the point of even documenting? (Participant 4, Hired Caregiver)

The holistic information they captured may be less structured than objective measures about a client in their home, which may be more challenging to share but essential for providing quality care.

With limited access to technologies that can support communication to update caregivers, there was creativity beyond using physical notes kept in one area of a home. Caregivers sometimes implemented more prominent written notes and posted them around their client’s houses. The posted messages aimed to provide context-specific information in the locations where actions needed to be taken by other caregivers, and as a salient reminder, where one hired caregiver participant said:

We posted notes all over the place. It was the only way! I put them on the bathroom wall for when [the PSWs] came in. There was one for the morning, one for the daytime, one for the evening, and it was simply, “This is what [the client] requires.” It was listed. They didn’t have to search through charts… I had so many thank-yous from PSW’s that were coming in. (Participant 13, Hired Caregiver)

Instead of calling or texting, these notes captured the attention of other caregivers when they were providing specific care tasks – Participant 13’s most effective method for ensuring other caregivers could see information at the time and place that it was needed. However, beyond physical documentation, the other process involved in updating the participant’s caregiving teams was verbal communication during client handoffs. The participants updated others on new information to ensure their awareness about changes in their home care situation since the incoming caregiver’s last visit. One hired caregiver participant mentioned the details they needed to update other caregivers about:

Whenever there’s someone’s turn to take over my shift, I would just say that “[They have] been OK. [They have] been very calm, but there are times that [they were] a bit manic.” Usually, I tell them that [they] already ate that [they] already took [their] meds at this time, and I usually tell [them] that the only thing that’s missing is [their] meds for this hour. (Participant 2, Hired Caregiver)

Information shared verbally supplements the written record by providing a holistic picture of the situation and supports emphasizing time-sensitive details. Some family caregiver participants felt burdened by continuously communicating with other caregivers about critical safety information that could have severe consequences if not carried out correctly. One family caregiver mentioned their concerns with having to update new caregivers in their home on details about keeping their parent safe:

It’s reminding them stuff like [thickening their drinking water], which is a really, really big risk because my [parent] is prone to something called aspiration, which means if [they] eat any food that can go in [their] lungs, which has happened before, then that can develop into pneumonia… We’ve had to take [them] to the hospital multiple times for that, and that can be really scary because someone like [my parent], who is more vulnerable and prone to getting disease and infection. Especially, taking [them] to the hospital like now [during COVID-19] is pretty scary. (Participant 6, Family Caregiver)

There is potential fear of future adverse events occurring as family caregivers understand the specific risks associated with their home environment. However, when in-person communication was not possible but essential information needed to be shared with the caregiver team, the participants used telecommunications devices to provide updates via a phone call or a text message. One family caregiver participant mentioned calling their agency when an adverse event occurs in their home:

If it’s really important, then I’ll call the agency and tell them that [their] workers need to know that such and such is happening… like if there’s been a fall, for instance. (Participant 7, Family Caregiver)

There may be an expectation that information communicated to caregiver agencies over the phone is subsequently shared with other caregivers involved with the client to ensure widespread awareness when visiting the home. Telecommunications devices may also afford hired caregiver participants the means to have direct communication with caregivers; where one hired caregiver mentioned the efficiency of this method of sharing information:

Especially with younger people, with younger family members, they will often text me on my work phone. That’s the most efficient way I find, I text. I called, but I find it even easier to text a lot with the visiting nurses who I talked to recently. (Participant 5, Hired Caregiver)

However, the demographics of the caregivers, the urgency of the information that needs to be shared, time constraints, and ease of use may be contributing factors to if phone calls or text messages can be used as a reliable communication channel for complex home care.

3.2 Learning to Improve Care & Decision-Making

Family and hired caregivers in this study continuously 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. The degree to which family caregivers felt the need to learn new information resulted from their loved one’s conditions or symptoms, where one family caregiver participant explained:

[My spouse] had delirium frequently, and [I was] trying to navigate through the delirium where you can’t deny what somebody is experiencing in a delirious state… I could never quite understand it. (Participant 10, Family Caregiver)

Without a medical background, there was a desire for family caregiver participants to better understand what their loved one was experiencing, despite the challenges of overcoming this knowledge gap. Navigating information often looked like doing their own research through reading about the condition or symptoms, learning about medical treatments, and gathering information from healthcare professionals; where one family caregiver participant said:

The Parkinson’s I’ve learned that the more you can engage them intellectually and emotionally with contact, with people, and with things that they like and love, the better they are, even with their mobility. I read up on things. I learned about [my sibling’s] medications, and I know the effects of all of them, and I know the effects of that horrible [medication they were] taking that caused psychosis. I’ve got an informational sheet from some of the people who worked with us who have gone on to become RPNs and so on. [They] gave me a whole hand-out on how to deal with delusional behaviour, and I’ve read about it too. (Participant 8, Family Caregiver)

While some information that family caregivers were learning from healthcare professionals supported their loved ones through improved care, learning more about providing care in the home also supported their well-being, specifically for performing physical tasks. The family caregiver participant further described how they learned to help their sibling’s mobility while also supporting their own health:

I was doing things wrong for a while too. [My sibling has] mobility issues, and [they] would have difficulty getting up out of a chair. We devised a way of counting and using momentum to pull [them] up. Then I realized I’m hurting my back this way. I learned from some of the various physiotherapists and occupational therapists, and they gave us instructions. (Participant 8, Family Caregiver)

It is important to note that the family caregiver participants in this study were not medically trained professionals. Unlike a hired caregiver, the family caregiver participants did not have a standardized knowledge base to support medical decision-making or gather information. One hired caregiver participant provided an example where their training and background were necessary for recognizing a severe medical issue that could quickly develop into sepsis – something that a family caregiver may not have reacted as promptly to:

Well, I was doing it with the knowledge base—the pre-identified wounds on [their] leg, ulcers. I knew right away, but someone that didn’t have that background wouldn’t have pushed the issue. (Participant 13, Hired Caregiver)

A knowledge base helped Participant 13 with their perception-action response to the issue. However, while family caregiver participants provide a significant amount of care, there may be barriers to developing perception-action responses for those without a medical background. Family caregiver participants’ importance in keeping detailed health records was their approach to supporting caregivers with that knowledge base and capacity to recognize potential medical issues. For example, learning from physical documentation was necessary to support decision-making for hired caregiver participants who visited multiple clients daily. One hired caregiver explained how they relied on physically recorded notes – documentation that included information from the family caregiver and other hired caregivers – to learn about the most recent events that occurred in the home and make the safest decisions about when their client can take their medications:

I also look up their records of what happened all throughout the weekend. It’s usually placed on the table here in [my client’s] home. It’s just the first thing that you go over when you come here… You try to summarize what happened and what time [their] previous extra dose was given so that you can say, “OK, we can give [them] an extra dose at this time,” it’s safe to give [them] an extra dose. (Participant 2, Hired Caregiver)

However, there remains a cognitive challenge in learning new information to inform decisions, where hired caregiver participants must transform data into short summaries. The time required to transform the information from paper-based records may constrain busy caregiving work schedules in complex home care.

3.3 Conflicts within Caregiver Teams

The participants in this study often experienced conflicts within their caregiving teams, whether through defining their roles and responsibilities or through communication and coordination. These conflicts often impacted care continuity and increased their frustration and trust in each other. Communication challenges existed between family caregiver participants and their hired caregivers, as well as between hired caregivers, their clients, and other healthcare professionals. Conflicts were especially evident when there was a barrier to technologies to ensure two-way communication was occurring. This was important for situations where actions were required by caregivers to maintain the safety of the older adult in the home. The technologies used to support communication often only provided a one-way channel with no feedback or confirmation of the receiving caregivers’ understanding. One hired caregiver said:

Most of the time, my frustration was with communicating with the home care and caregivers… There was no connection with me. I got to call a number and leave a voice message. I may or may not have heard back. (Participant 13, Hired Caregiver)

Limitations in communication technologies may result in uncertainties about receiving and promptly understanding care messages. With the number of individuals caregivers care for, reliable communication is critical to reduce tensions. The challenges identified in communicating among caregivers were also evident with hired and family caregivers, where conflicts emerged from hierarchies in caregiving teams. Perceived hierarchies raised frustrations for Participant 13, who was concerned with the effectiveness of the communication. Non-standardized information-sharing methods placed unnecessary stress on the caregiver team and how they coordinated information sharing about home care:

I was frustrated in the fact that if I identified a problem, then there needed to be only one person calling the doctor’s office, only one person calling the [agency]. They didn’t need multiple phone calls from multiple members or care providers because it was not effective. [The family caregiver] had verbally given all of these people consent for me to handle everything [but] then [they] would start calling.. (Participant 13, Hired Caregiver)

From the family caregiver perspective, participants specifically discussed the challenge of ensuring an understanding of the nuances and preferences within a home care situation by every individual caregiver. They described their responsibility for effectively communicating their family’s needs in terms of home care services and the challenge in communicating their needs.

And we’ve had some trouble with navigating that sort of thing where finding PSWs, especially at a time like now [during COVID-19], is pretty limited. It’s just been a little bit difficult to get them to understand our perspective and what the client needs. What my [parent] needs. (Participant 6, Family Caregiver)

The context of COVID-19 made disseminating this information in an understandable manner difficult with reduced access to other hired care if caregiving needs were not being met appropriately. As a result of conflicts with ensuring that specific care needs were being met, some family caregivers felt additional responsibility to monitor the care tasks that were occurring in their home. There was an observed need to provide feedback in real-time that was specific to their home, where family caregiver participants had an increased perception-action response for potential safety risks, due to expertise in their home environment – a skill which hired caregivers may lack in unfamiliar physical settings:

If I see something not right when I’m with [them] for the last half hour [of their shift], then I will say, “This is not right. You have to stand here, or [my spouse will] fall over”. That kind of thing. Some of them like it, and some of them don’t like it. (Participant 7, Family Caregiver)

The conflict in this context of information sharing may be further due to a lack of trust in other caregivers performing care in their home where they are not familiar with the nuances of the environment, along with managing the power balance between who is acting as the primary health information holder. The family caregiver participant further explained their uncertainty about if the care needs that they had communicated were being met when they are not around to observe:

I’m there for half of the shift because [my spouse] does the last half as an exercise plan, and that’s done downstairs. I see it. If there’s a problem, they’ll tell me. But the thing is, I don’t know whether they’re [watching for fall risks] when I’m not around. That’s my biggest worry. I can’t be all there all the time. It’s just not possible. (Participant 7, Family Caregiver)

Ultimately, the uncertainty around caregivers watching for specific safety risks in their home created anxieties, reducing the benefits that respite care can provide.

This study describes the experiences of caregivers of older adults within complex home care situations, providing a foundation for understanding the complexities of information management and health communication that may inform future technology development. While information collection and storage that consists of paper-based technologies and communication that occurs via email, phone calls, texting or in-person currently supports care coordination, there is potential for new technologies or interventions to meet the emerging needs of caregivers in various complex care settings [21, 28, 37]. With the aging population worldwide, and the increasing number of caregivers supporting the healthcare system by providing home care services [1, 38, 39], it is increasingly important to develop new technologies that support caregivers in this context. Launching this development with an in-depth understanding of caregivers’ experiences in this complex work domain is essential [39].

4.1 Challenges with Caregiving Collaboration

In this study, participants’ experiences in complex home care situations included caring for older adults who have any combination of chronic conditions, mental health issues, medication-related problems, and social vulnerability. With the complexity of the caregiving situations that this study observed, the participants were involved with collaborative processes that supported information awareness within caregiver teams. Significant literature describes the importance of including family caregivers as collaborators for home care and bridging their contributions to home care with hired caregivers [16, 29, 40].

Our study builds on collaborative information sharing, which has been identified as a point of tension in other areas of health information sharing, such as between healthcare professionals and family caregivers for medication decision-making [41, 42]. In the complex home care domain, we observed the need for hired caregiver participants to acquire situational awareness by understanding the specific details of their client’s care and that paper-based records can be an information source for family caregiver participants to gather and present information over time. Family caregiver participants sometimes developed their own paper-based information management systems, where there may be a perceived time burden for accessing and contributing new information in this complex environment. However, there is a clear interest in electronic record-keeping for home care and the potential for the design of a collaborative digital tool to be implemented among caregiving teams that include the family caregiver. Potential systems may provide value for efficiently gathering health information from users and intelligently transforming it into situational summaries. The potential opportunities for digital tools to transform information may further reduce the cognitive effort required to search for information and quickly establish an updated mental model of the home care situation to support decision-making.

From the family caregiver perspective, our study also observed the challenges that were experienced in this study with communicating health-related information to other caregivers. In comparison to clinical settings, it has been identified that while family caregivers were engaged in the care of their loved ones, professionally trained caregivers sometimes did not recognize family caregivers as important individuals in the system and failed to integrate them into the care team [43]. We observed similar challenges for family caregiver participants and instances where hired caregiver participants expressed their engagement with family caregivers. While much of the literature focuses on communication for educating family caregivers about the healthcare system and a patient’s health condition [44–47], it is important to highlight that family caregivers are in a unique position to share specific caregiving knowledge in the context of their home that can support perception-action responses for patient safety decision-making. However, sometimes sharing this knowledge with other caregivers is challenging because of conflicts within caregiver team dynamics. Unlike healthcare professionals who may have access to a digital health system for reliably sharing information with each other, the family caregiver participants in this study did not always have the opportunity to use this type of communication tool and had to rely on verbal communication, written or typed notes, which may not have been effectively received by other caregivers. Digital systems that support better collaboration with their loved one’s caregivers may reduce conflicts with information sharing by enabling family caregivers to contribute contextual information about their home as recognized members of the care team.

With the lack of supporting information management tools, the family caregiver participants in this study often took on significant workloads and time burdens to coordinate home care for older adults, similar to that of their hired caregivers, which may support their situational awareness [48]. Maintaining continuous awareness of caregivers moving throughout the home can be a significant undertaking for a family caregiver when information management methods and communication protocols involve paper-based documentation, standard messaging functionality on telecommunications devices, and in-person communication. Building a collaborative system for effective information exchange with these methods requires organization, effective documentation design to capture and display the severity of various health metrics and best practices for care, and establishing communication protocols with caregivers. While there exist caregiver participants who expressed being able to manage these processes on their own, others may not have had the means or the time to facilitate this interaction all the time, given that it reflected many of the responsibilities of a full-time job [49]. However, there may be potential for the development of new technologies to successfully be used collaboratively among caregiving teams, improving communication and health information sharing for older adults in complex home care.

4.2 Design to Support Collaboration

Qualitative studies conducted to understand the needs of caregivers in the context of home care have provided recommendations for developing future technologies to support caregiving processes from the perspective of family caregivers. Tang et al. [29] interviewed family caregivers about their home care experience and identified challenges with updating their caregiver team, as well as issues related to information becoming construed as it was passed from caregiver to caregiver. In our study, we found examples of the lack of fundamental two-way communication between caregivers resulting in uncertainty about whether other caregivers received and understood the information that was shared, along with challenges related to establishing an understanding of caregivers’ communication roles and responsibilities. While Tang et al. [29] recommended digital systems include secure messaging, customization, shared calendars, checklists, medication lists, and knowledge about the patient’s condition, our findings can further suggest that designs include the ability for caregivers to know if others have comprehended information that is presented in each of these information sharing features to reduce uncertainties in their caregiving tasks, along with including areas to share nuanced information about their home.

In a related study, Holden et al. [31] performed a qualitative artifacts analysis with family caregivers of patients with dementia and formal caregivers at an adult day service to determine how their current tools supported their health information management processes. They also identified significant workloads for caregivers to manage information using paper-based technologies and challenges with communicating with healthcare professionals [31]. The authors recommended that information technologies should put the family caregiver in control [31]. While this recommendation is important, there may be other complex home care situations where engineers and developers of these systems should understand how technology design may influence caregiving relationships. For example, as evident in the experience of Participant 13, who was requested to control all aspects of their client’s care, they experienced challenges with establishing who would be responsible for coordinating care with the family caregiver. It is critical to recognize that designs supporting collaboration should also reflect on how they may influence any perceived levels of control by one caregiver over another. One design recommendation is integrating caregiver profiles to support formalizing roles and care coordination responsibilities in the home. Establishing the context of communication expectations among the caregiver team may also relieve stress regarding the expected flow of information among the caregiver team.

Finally, with the experienced workload for documentation, a technology designed for family caregivers may be most effective if it is interoperable with the digital systems being used by the hired caregiver’s agency or other care reporting systems to enable greater transparency of information. Otherwise, a system that provides the most efficient health information interaction through means other than physical notetaking or typing could ease record-keeping workloads. Improved record-keeping may allow caregivers to spend more time physically caring for an older adult or take time to rest and recover before their next shift.

4.3 Adoption Challenges for New Technologies in Complex Home Care

There is significant potential for new technologies to support information management and care coordination in complex home care. Despite recommendations for collaborative digital systems, there remain no universally adopted digital systems in this caregiving context in Ontario in 2021. One of the challenges of building technologies for older adults’ home care environments identified across this study may be the remaining reliance on paper-based records by home healthcare systems [31]. Paper-based records lack functionality for real-time two-way communication, do not support caregivers to adapt to change in a fast-paced, dynamic home environment, and are limited in supporting cognitive work across homes due to non-standard designs [50–52]. However, in this study, many participants described how paper-based records supported health information documentation and provided an acceptable and effective method for sharing information with other caregivers. 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 [53].

The literature has identified that technology may play an important role in the evolution of paper-based records for home care. For example, digital personal health records for home care would be perceived as useful in replacing a paper-based system because they would keep relevant information in a single location and save physical space [29, 31, 54]. However, for widespread adoption, the location and space benefits provided by digital records may not be enough. The successful implementation of new technologies for caregivers of older adults may only be achieved once the health information-interaction experience with technology is intuitive enough to exceed that of a paper-based record, improving the experience of carrying out caregiving tasks.

Given the broad experiences of the caregivers in this study, the complexities of their home care situations, and their capacities to provide care, building technologies to meet caregivers’ needs for adoption remains challenging for designers and engineers. However, for future technologies, we can build on the recommendations provided by previous literature by suggesting that along with meeting caregivers’ immediate needs for information management and communication tools, early adopters may be enticed to integrate new technologies if the system’s design goes beyond their unmet information and communication needs to improve the experience of caregiving in complex environments: by providing greater satisfaction through improvements to the mode of interacting with health information. For example, providing an information-interaction method that eases the storage and retrieval of information in a standardized and structured manner and lends intuitive access to knowledge by the caregiver at the time and place where it is needed [31]. In previous studies, Sezgin et al. [21] proposed using voice interaction technology as a more effective method to interact with health information. Others have proposed developing hybrid solutions that integrate electronics into paper-based technologies to enhance the interaction and functionalities of paper-based records [31]. The interaction experience provided by these alternative information technologies may initially interest caregivers looking for new ways to support information management and communication among caregiver teams in complex home care environments. However, to the best of the authors’ knowledge, there have been no developments of these technologies deployed in the context of complex home care that has been studied for the impacts of their efficacy, engagement, and the intent to adopt such technologies for use in the home, among caregivers of older adults with complex health conditions.

4.4 Strengths & Limitations

This study was a preliminary exploration with the goal of capturing foundational perspectives of family caregivers and hired caregivers of older adults managing health information in complex home care environments. Limited research is conducted in this context, resulting in a gap in informing the future development of digital systems to support home-based complex care. While the sample is concentrated on participants from Ontario, the results may not generalize to other Canadian provinces and territories or other countries. Also, most participants were female. Future participant recruitment could focus on gathering insights from other locations and participant genders with caregiving experiences in this domain.

This exploratory research emphasizes the need to build future research out more deeply and to include increased sample sizes through larger studies. Gathering this data during the COVID-19 pandemic allowed capturing a glimpse into caregiving that added even more complexity. While this limited participants who could participate, it flags key findings to be explored further.

This study explores caregivers’ experiences managing complex care in a home environment and provides insight into developing technologies that can support health information management and communication in this non-standardized setting. We found that caregivers of older adults in complex home care rely on paper-based tools and telecommunications technologies to update their caregivers about care status in the home. While there are benefits to having physically documented health information in the home, such as being in one expected location or catching caregivers’ attention in various places, current methods for coordination in complex home care do not entirely meet the needs of caregivers concerning documentation and information sharing burdens, and reliable communication. Furthermore, information sharing extends beyond health documentation to the connections between sharing and learning within caregiver teams about the safety nuances of a home environment – to which the family caregiver is likely an expert. With the variability in a home environment and the adaptations caregivers require to provide care, sharing and learning about the nuances of this environment within the caregiver team is critically important to support patient and caregiver safety.

We also identified knowledge that can begin to inform the design of information technologies for this dynamic environment. Supporting and including caregiver collaboration around communicating health information and, ultimately, the design process around these tools has significant potential to reshape how we think about health information. There is an identified need and desire to create a better system for home care than paper-based information management. However, there is still work that must be done around how to best design, implement, and encourage the adoption of these tools within this non-traditional yet increasingly important care environment.

Further qualitative research is needed to capture the complex experiences of in-home caregiver challenges fully. Future research examining how to develop tools, approaches, and design methods will significantly benefit health information-focused communication.

Acknowledgements

We are grateful for our participants who provided generosity and openness to their experiences.

Funding: Partial financial support was received from Telus Health and a Natural Sciences and Engineering Research Council of Canada Collaborative Research and Development grant, as well as the Ontario Graduate Scholarship and the University of Waterloo Alumni@Microsoft Graduate Scholarship.

Competing interests: The authors declare no competing interests.

Ethics approval: Approval was obtained from the research ethics committee of the University of Waterloo. The procedures used in this study adhere to the tenets of the Declaration of Helsinki.

Authors’ contributions: Conceptualization: [Ryan Tennant, Kate Mercer, Catherine M. Burns]; Methodology: [Ryan Tennant, Kate Mercer, Catherine M. Burns]; Formal analysis and investigation: [Ryan Tennant, Sana Allana]; Writing – original draft preparation: [Ryan Tennant]; Writing – review and editing: [Ryan Tennant, Sana Allana, Kate Mercer, Catherine M. Burns]; Supervision: [Kate Mercer, Catherine M. Burns].

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No competing interests reported.

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Caregiving Experiences with Health Information Management and Communication in Complex Home Care: Informing Technology Design for Caregivers of Older Adults

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Abstract

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1. Introduction

2. Methods

2.1 Study Design

2.2 Participants & Data Collection

2.3 Data Analysis

3. Results

3.1 Updating the Caregiver Team

3.2 Learning to Improve Care & Decision-Making

3.3 Conflicts within Caregiver Teams

4. Discussion

4.1 Challenges with Caregiving Collaboration

4.2 Design to Support Collaboration

4.3 Adoption Challenges for New Technologies in Complex Home Care

4.4 Strengths & Limitations

5. Conclusion

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