Benefits and Challenges of Mobility and Medical Alert Service Dogs for Caregivers of Service Dog Recipients (2024)

Purpose:

Mobility and medical alert service dogs are an assistive technology for individuals with disabilities or chronic conditions. Informal caregivers of individuals with disabilities are subject to physical and emotional stress due to their responsibilities. Understanding how service dogs, an increasingly common assistive technology, may add to or subtract from caregiver stress is crucial for promoting caregiver well-being. The purpose of this study was to analyse caregiver accounts to understand their perspective on benefits and challenges they face with mobility and medical alert service dogs.

Materials and Methods:

Open ended survey responses from 117 caregivers of service dog recipients (N=72 with a service dog, N=45 on the waitlist) were analysed through a conventional content analysis.

Results:

Four major themes were found regarding caregiver and service dog: Family Benefits, Caregiver Benefits, Assistance Through Service Dog’s Training, and Drawbacks.

Conclusions:

Findings suggest that benefits and challenges of mobility and medical service dogs extend beyond the service dog recipient, affecting the caregiver and other family members as well. Future studies should further explore this interaction to determine the best way to support caregivers of individuals with disabilities.

Keywords: Caregivers, Service Dogs, Assistance Dogs, Human-Animal Interaction

Impacts of Disability on Caregivers

Caregiving responsibilities often negatively affect a caregiver’s overall well-being [7,8]. For example, research suggests that informal caregivers (i.e. family members such as parents or spouses) experience difficulties with sleep [9], high levels of psychological stress [5], and even suppressed immunity [10] and elevated mortality rates [11]. Further, studies have found that informal caregivers of individuals with physical and mental disabilities exhibit increased risk of suicidal ideation in comparison to controls [12]. Informal caregiving is also linked to increased risk of common mental health disorders independent from other social stressors [6]. One study found that primary caregivers of children with disabilities can experience feelings of isolation, a lack of social support, and significant financial stress [13].

Given the many negative effects of caregiving, multiple studies have examined factors that may mitigate these effects such as social support, positive relationships, and positive emotions [5,13,14]. Identifying how to support and empower caregivers is important as research continues to examine intervention options for individuals with disabilities. Assistive technologies and aids, including a service dog, may be particularly beneficial to reduce caregiver burden among informal caregivers for individuals with disabilities and chronic conditions [15].

Service Dogs and Caregivers

Previous research on caregivers of individuals with service dogs, primarily on caregivers of children with autism service dogs, have brought to light benefits to caregivers from the service dog’s assistance and presence. A longitudinal study of 90 primary caregivers of children with ASD found that the addition of an autism service dog in the home had a significant positive effect on parenting stress as well as caregivers’ physiological stress [16]. In addition, qualitative studies have described how autism service dogs can reduce caregiving stress as well as strengthen the bond between family members [17–19]. Parents of children with autism service dogs have also shared that they felt an added sense of safety when the service dog was with the child [17] and with that sense of safety, the service dog enabled the parents to sleep better [18]. Some studies suggest that there is a bond between the service dog and caregiver and that the service dog may serve as a friend to the caregiver [18,20]. Service dogs may not only benefit relationships within families, but also the relationships that the family has with others. For example, having a service dog in public can result in increased social recognition and interaction for the family and service dog recipient [17–19].

In addition to these potential benefits, caregivers may also experience challenges with having a service dog in the home. The maintenance and care of service dogs can be expensive and time consuming [20–22]. Parents of children with various types of service dogs may spend over 6 hours a week and over $1,300 a year caring for the service dogs, with many parents describing this as burdensome [20]. In addition, service dogs often require ongoing training and may experience behavior issues [21,23]. Though the service dog requires extra time and additional responsibilities, caregivers have shared that the benefits of the service dog outweighed the inconveniences of their care [18–20]. As studies continue to quantify the benefits and challenges of a service dogs, it is important to capture caregiver-specific effects and to consider multiple types of service dogs. Unlike quantitative survey measures, qualitative studies allow for both benefits and drawbacks to be analyzed from the caregiver’s perspective. Thus far, there has been minimal attention given to caregiver perspectives on the benefits and challenges of having a mobility or medical service dog in the home. The purpose of this study was to explore caregiver- and family-specific benefits and challenges of mobility and medical service dogs from the perspective of informal caregivers of service dog recipients. A secondary goal was to compare the expectations of caregivers of individuals on the waitlist to the experiences of the caregivers of service dog recipients.

Participants

The qualitative data set used in this study was part of a larger cross-sectional study with qualitative outcomes for the service dog recipients reported in Rodriguez et al. Data collected on caregivers with standardized survey measures have been published separately [25]. This manuscript focuses on qualitative data pertaining to the caregivers of the service dog recipient. A total of N=117 caregivers participated in the research, including N=72 caregivers of individuals who had previously received a service dog and N=45 caregivers of individuals on the waitlist to receive a service dog (See table 1 for participant demographics). Caregivers consisted primarily of parents, but also included both spouses and adult children (table 1).

Both caregivers and service dog recipients were recruited from a USA non-profit service dog provider, Canine Assistants, which trains and places mobility, diabetic alert, and seizure response service dogs. Therefore, these service dogs were the focus of this research. All service dogs provided by Canine Assistants are purpose-bred Golden Retrievers, Labrador Retrievers, Goldendoodles, or crosses of these breeds. The service dogs are placed with recipients after an 18-month training period where staff and volunteers raise and prepare the dogs for their role. Mobility service dogs are trained to assist people with physical disabilities. Diabetic alert service dogs are trained to alert to changes in blood sugar and to get help in emergencies. Seizure response service dogs are trained to support individuals during a seizure and to get help if a seizure occurs. Canine Assistants provides service dogs free of charge to families and provides coverage for medical, food and training costs for the service dog’s entire lifetime. In order to qualify for a Canine Assistants service dog, service dog recipients needed to demonstrate the following inclusion criteria: (1) a physician completed and signed medical history form indicating evidence of physical disability, seizure condition, or other special need, (2) no violent crime or animal abuse history or conviction, and (3) the ability to care for and maintain the health of a service dog. If the recipient was a minor, or experienced functional limitations that would prevent them from being able to maintain the health of the service dog, a caregiver over the age of 18 years old was required to be present to ensure appropriate care.

Procedures

The research team invited service dog recipients and their caregivers, if applicable, to participate in the study via an email and a phone call. During the phone call, verbal informed consent and/or minor assent was obtained. Study participation for both recipients and caregivers included a survey that took approximately 10–20 minutes to complete. The survey was either completed online as a written survey or over the phone and then transcribed verbatim for analysis. If a service dog recipient was unable to complete a survey on their own, a caregiver acted as a proxy for the service dog recipient and completed the survey on their behalf. However, caregivers were also asked to complete a survey for themselves individually. After completing the survey, recipients and their caregivers were entered into a drawing of 20 cash prizes ranging from $25-$100.

Analysis

A conventional content analysis [26] examined four open-ended survey questions to explore the caregiver experience. A qualitative approach allows researchers to explore both the benefits and drawbacks, typically difficult in quantitative analyses. The open-ended questions that were analyzed included both the caregiver self-answered surveys and proxy surveys to ensure all references to the caregiver were captured in the analysis. Questions for the individual self-surveys included: (1) What is (do you think will be) the most helpful aspect of having a service dog? (2) What does (do you think) the service dog (will) do that helps the most? (3) What are (do you think will be) the drawbacks to having a service dog? (4) Is there anything else you would like to share to advance the science and understanding of service dogs for individuals with disabilities and their families? Questions for the proxy surveys included: (1) What does <Service Dog Recipient Name> consider (expect) to be the most helpful aspect of having a service dog? (2) What does the service dog do (is expected to do) that <Service Dog Recipient Name> feels helps the most? (3) What does <Service Dog Recipient Name> consider (expect) to be the drawbacks of having a service dog? The questions did not directly ask who (recipient or caregiver) the helpfulness or drawbacks affected, which allowed participants to share what they thought was most important.

The authors used inductive methods to derive themes and codes through open coding. The software NVivo 12 (QSR International, Melbourne, Australia, 2015) was used for all coding and analysis. The research team read through the data set multiple times and assigned codes based on specific phrases within responses to the survey. If responses contained multiple phrases, multiple codes were assigned. The majority of responses were descriptions of benefits to the recipient and were not coded; phrases that were not in reference to the caregiver or family were coded as no reference. The content analysis only coded benefits and drawbacks related to the caregiver and the family. The data referring solely to recipients was excluded from the coding process.

In order to ensure reliability, 20% of the data was coded by two members of the research team independently. The codebook was developed and refined over three rounds of reliability, in which adequate inter-rater agreement was reached at the final round (Cohen’s Kappa = 0.864) and one member of the research team went on to code the data set in its entirety. Frequencies of categories mentioned by respondents are presented (table 2). Responses from one individual could be recorded in multiple categories. For example, “It can be a lot to hold on to both of them at times on outings. But the difficulty is well worth it to see the joy and love between the two of them,” would receive both the codes Travel Issues and Drawbacks outweighed by the benefits.

Family Benefits

The first theme was the benefits that the service dog gave the family, beyond the benefits to the individual service dog recipient. These benefits were mentioned by 42% of caregivers in the service dog group, captured across seven categories. The most commonly mentioned benefit to the family was emotional support (17%). One caregiver shared, “He is what I consider to be an emotional support for [recipient] and us together as a family.” Caregivers also mentioned general family benefits (14%) which included any instance of the service dog having a positive impact on the family as a whole. Another caregiver shared, “The entire household has benefited from him [the service dog] being here.” The bond shared between the family and the service dog was also mentioned (13%) as a benefit. One participant mentioned, “EVERYONE in the family has bonded with her.” Though service dogs are trained for one individual within the family, 10% of caregivers referred to our service dog, rather than referring to the service dog as solely belonging to the recipient. Additionally, 8% of caregivers mentioned that the service dog was part of the family saying things such as, “Our service dog has become a family member.” Only a few caregivers mentioned sibling benefits (3%) and family stress reduction (3%) from the service dog.

Caregiver Benefits

The second theme was the benefits that the service dog gave to the caregiver themselves. These benefits were mentioned by 43% of caregivers in the service dog group, captured across eight categories. The most commonly mentioned category of caregiver benefits was the service dog’s bond with the caregiver (19%). When talking about her son’s service dog, one caregiver shared, “Companionship, unconditional love, and a warm furry hug for [recipient]...and me! I trust him more than extended family”. The second most commonly mentioned category was the service dog as a replacement for the caregiver (14%). In this role, caregivers mentioned the ability of the dog to take over for them in certain situations. One caregiver said, “he gives me piece of mind. I now have the ability to leave her [recipient] and know that he [service dog] is a perfect stand in for me in keeping her safe and assisting her.” The category of stress reduction was also mentioned (11%) as caregivers often shared comments such as “we worry less.” Some caregivers also mentioned increased positive public perception (7%) in which caregivers felt relief in how the public responded positively to the recipient with a service dog in comparison to when they went out in public without a service dog. General caregiver benefits (6%) included mentions of the caregiver’s relationship with the service dog through their role as a caregiver. Additionally, caregivers reported that the service dog offers them emotional support (4%). One caregiver shared, “having [the service dog] keeps me calm.” Caregivers also reported that the service dogs encouraged physical activity (3%) by requiring the caregiver to take the service dogs on walks.

Assistance Through Dog’s Training

The third theme was the benefits of the service dogs’ training focused on the tasks they were trained to do for the service dog recipient’s disability or condition. These benefits were mentioned by 33% of the caregivers in the service dog group. The most common benefit category of training was general assistance which included any mention of the service dog getting help from a caregiver when the recipient needed help (29%). Caregivers shared, “[service dog] has a sense when something is wrong, making it easier for us to address any issues before they become a problem” and “I like knowing that the dog is right there with [recipient] as she would alert us if something were wrong.” Some caregivers also mentioned benefits related to seizure alert (4%). One caregiver shared, “Epilepsy never sleeps, and there is no warning. As a caregiver, it can be exhausting to be ‘on’ call for the unknown 24/7/365. [The service dog] is an extra eye & nose helping to keep watch over [my son]. [The service dog] ‘knows’ when things aren’t right with [my son] and she alerts me.” The medical assistance (1%) provided by the service dog, or the ability of the service dog to alert the caregiver about the recipient having a medical issue that is not a seizure, was also mentioned.

Drawbacks

The fourth theme was the drawbacks of having a service dog. When asked about the drawbacks of having a service dog, 89% of caregivers in the service dog group described 15 categories related to drawbacks. The most common category mentioned was general drawbacks which encompassed the extra work and responsibility required to take care of and monitor the service dog (29%). Caregivers shared comments such as, “taking him with us to places takes more time and effort than just going by ourselves”, “he [service dog] does require a significant amount of extra time and attention” and “sometimes we find it causes more difficulty and stress to take him [service dog] places.” Necessary grooming was also mentioned frequently (22%) by caregivers. One caregiver shared, “grooming is always at the top of my to-do list and fighting dog hair.” On the other hand, 21% of participants directly stated that there were no drawbacks to having a service dog and 13% mentioned that the benefits of the service dog outweighed the drawbacks.

Caregivers also mentioned issues related to travel (18%). One caregiver shared, “taking him [the service dog] with us to places takes more time and effort than just going by ourselves.” Many caregivers also mention the drawback of the service dog having to use the bathroom (14%), specifically, many caregivers describe, “picking up poop” and the issues concerning, “taking the dog out in bad weather.” Associated costs (14%) of having a service dog were also mentioned as a drawback. Multiple caregivers referenced non-routine expensive medical procedures (such as hip replacements or knee surgeries) that fall outside the Canine Assistance provided veterinary care. Additionally, caregivers mentioned the negative public opinion (13%) associated with a service dog as a drawback. For example, one caregiver shared, “people stare and always want to pet the dog.” Less than 10% of caregivers mentioned drawbacks related to training requirements (7%), negative behaviors (7%) that the service dog displays, and issues with accessibility (6%). Less than 5% of caregivers mentioned drawbacks related to issues with taking the dog to school (3%), morbidity of the service dog (3%), negative activity requirements (e.g. exercising the dog) (3%) and a lack of public education (1%) regarding how to interact with the dog.

Waitlist Comparison

An exploratory sub-aim of this study was to compare the differences between caregivers of recipients on the waitlist for a service dog and those who were caring for a recipient already placed with a service dog. Regarding benefits of the service dog to the family (theme 1), caregivers on the waitlist to receive a service dog described anticipated benefits to their family less often in every code when compared to those with a service dog. Overall, codes in this theme were mentioned by only 16% of caregivers on the waitlist, compared to 42% of caregivers with a service dog.

Regarding benefits of the service dog to the caregiver (theme 2), caregivers on the waitlist to receive a service dog described anticipated benefits of the service dog to themselves less often than those already with a service dog in most categories. Overall, codes in this theme were mentioned by 38% of caregivers on the waitlist compared to 43% of caregivers with a service dog in the home. The only category in which waitlist expectations were higher than what was experienced by those with a service dog in the home was stress reduction (11% service dog, 18% waitlist). The largest difference between experience and expectation was for the human-animal bond code (19% service dog, 0% waitlist).

In regard to the service dog’s training (theme 3), caregivers on the waitlist to receive a service dog described anticipated benefits of the service dog’s training more often than caregivers already caring for a service dog recipient. Overall, codes in this theme were mentioned by 33% of caregivers with a service dog and 58% of caregivers on the waitlist. All categories (medical assistance, seizure assistance and general assistance) were mentioned more often by caregivers on the waitlist to receive a service dog.

In regard to the drawbacks of the service dog (theme 4), caregivers already placed with a service dog described drawbacks more often than those on the waitlist to receive a service dog. Overall, drawbacks were mentioned by 89% of caregivers with a service dog and 78% of caregivers on the waitlist. Caregivers on the waitlist and with a service dog described drawbacks at similar frequencies (<10% difference) in all categories except for general drawbacks (29% service dog, 42% waitlist) and grooming (22% service dog, 7% waitlist). Additionally, more caregivers on the waitlist stated that there were “no drawbacks” to a future service dog than caregivers with service dogs (21% service dog, 38% waitlist).

Benefits of the Service Dog to the Caregiver

When asked about the general benefits of service dogs, caregivers stated not only benefits to the recipient, but also benefits to themselves and their families- without being prompted to do so. Caregiver’s responses to open-ended questions about the service dog align with findings from the standardized survey outcomes from this population [25]. Specifically, survey outcomes from this population found that compared to those on the waitlist, caregivers of recipients with a service dog reported better overall psychosocial health, less health-related worry, and better emotional functioning than caregivers of recipients on the waitlist for a service dog. In addition, caregivers with a service dog in the home reported greater family functioning on a standardized measure of family wellbeing compared to those on the waitlist [25]. The present qualitative data analysis suggests similar family-wide benefits. Thus, results from both the qualitative and quantitative portions of this study suggest that service dogs may confer tangible benefits for caregivers and families of individuals with physical disabilities and chronic conditions.

The most common benefit mentioned regarding the family was the emotional support that the mobility/medical service dog provided. This finding in is line with previous research that suggests that service dogs can act as a source of comfort and safety for both recipients and their families [17,18]. The most common benefit mentioned regarding the caregiver was the bond that the caregiver and service dog shared. This finding adds to the previous literature on service dogs demonstrating that mobility and medical alert dogs share bonds with the caregiver similarly to the other types of service dogs (e.g. autism service dogs, hearing dogs) referenced in the literature [17,18].

Beyond the service dog literature, two systematic reviews have been conducted to understand the effects of assistive technology provisions on family caregivers [27,28]. Both found that the provision of assistive technology among individuals with disabilities was associated with improved caregiver outcomes including less expended physical and emotional energy. The present study found similar results in that caregivers reported that the service dog was able to act as a ‘replacement’ to themselves, therefore enabling the caregiver to expend less physical and emotional energy towards caregiving.

Findings suggest that in addition to the direct benefit that service dogs have on caregivers, indirect benefits may also occur. Specifically, the service dog may reduce caregiving-related stress and worry by improving the independence, quality of life, and mood of the service dog recipient. Overall, with less than 50% of caregivers mentioning direct benefits of the service dog to themselves and family members, this qualitative analysis confirms that from the caregiver’s perspective, the service dogs are doing what they are trained to do: directly benefiting the recipient. The benefits to the caregiver and family are an additional benefit of service dogs, but should not take the place of more focused support needed to empower and improve to the wellbeing of caregivers of individuals with disabilities [5,29]. It is important for caregivers to recognize the additional responsibility and care that having a service dog in the home requires. With this increased responsibility, additional support for the caregiver may be necessary.

Drawbacks of the Service Dog to the Caregiver

When asked to describe the drawbacks of having a service dog, 89% of caregivers stated at least one drawback of the service dog in their responses, and 21% of these caregivers explicitly stated that there were no drawbacks related to the service dog. The analysis of responses from the service dog recipients from this same data set found that 81% of service dog recipients stated at least one drawback while 30% of recipients stated that there were no drawbacks [24]. These do not add to 100% because some recipients mentioned a drawback and then followed up describing that there were no drawbacks. These findings suggest significant similarities between how caregivers and recipients experience drawbacks to having a service dog. Further, although most caregivers stated a drawback of having a service dog in their response, 13% also mentioned that the drawbacks were outweighed by the benefits. Other studies focused on autism service dogs have also described caregivers’ reports of benefits outweighing drawbacks [17–19]. Results suggest that although caregivers described drawbacks to having a service dog when explicitly asked about drawbacks, the beneficial influence that service dogs have on the caregiver and family unit seemed to overshadow the negativity associated with the drawbacks. Caregivers may recognize that drawbacks are occurring, but work through these drawbacks motivated by the benefits they are experiencing.

When drawbacks were stated by caregivers, the most common drawbacks mentioned were general (29%) which encompassed the general care of having a dog in the home. Grooming (22%) and taking the dog to the bathroom (14%) were also mentioned by many caregivers as specific drawbacks. Previous literature has also found that a major drawback of having a service dog is the maintenance and time involved in the dog’s care [20,30]. Additionally, caregivers reported costs of the service dog as a drawback (14%). Canine Assistants, the nonprofit service dog provider for dogs in this study, provides the dogs free of charge in addition to providing veterinary care and food for the service dogs entire life. The costs mentioned by participants were outside of normal coverage including surgeries, grooming, and boarding the dogs if necessary for travel, which may be financially taxing for families.

As individuals prepare to add a service dog to their home, it is important that they are fully equipped for the responsibility of caring for a service dog. Though a service dog provides assistance, they are a living creature that requires unique daily care, maintenance, and sometimes unexpected challenges (e.g. medical accidents) in very different ways than more traditional forms of assistance. One study focused on the challenges of assistance dogs suggests that organizations should monitor expectations of service dog recipients and their support network (caregivers) in order to provide individualized direct support that will in turn enhance the experiences of the recipient, members of their support network and the service dog [23]. Findings from this study support this recommendation, as awareness of both benefits and challenges may provide more realistic expectations for the service dog. Additionally, findings suggest that caregivers would benefit from additional training and instruction as to how service dogs will fit into their homes. Previous literature suggests that caregivers often do not feel competent in engaging with or did not trust assistive technologies [27,31]. A focus on preparing and supporting caregivers through the process of attaining a service dog could prevent this lack of engagement and trust and thus potentially create a more successful intervention for the recipients.

Waitlist Comparison

Previous literature suggests that individuals on the waitlist for service dogs often mention benefits equal to or more often than individuals who have service dogs [17,24]. Results from the current analysis demonstrate that caregivers of recipients on the waitlist anticipate benefits to themselves similarly to how caregivers of the service dog recipient report benefits (5% difference). However, caregivers on the waitlist do not anticipate the benefits to the family that are reported by caregivers with service dogs (26% difference). This difference suggests that caregivers may expect to receive some benefits from the service dog themselves, but do not expect the benefits the service dog provides for their family. Understanding the influence of the service dog on the family may help families more easily adjust to having a service dog in their home.

Additionally, caregivers on the waitlist described their expected benefits regarding the service dog’s assistance tasks more often than caregivers with service dogs (25% difference). This is in line with reports from the service dog recipients in this study, in which recipients on the waitlist described more physical benefits in their responses, while recipients with service dogs described more psychosocial benefits in their responses such as the human-animal bond [24]. This focus on the human animal bond suggests that although the service dog’s assistance with tasks is important, the psychosocial aspects of the service dog’s benefits may not only be particularly important to both recipients and their caregivers but also potentially underestimated by those on the waitlist.

Finally, drawbacks were mentioned slightly more often by those with a service dog than by those on the waitlist (11% difference), mirroring previous literature [17]. It is important to note that 78% of caregivers on the waitlist did state at least one expected drawback, suggesting that they are aware of the challenges of having the service dog in the home.

Implications for Rehabilitation.

• Mobility and medical alert service dogs are increasingly partnered with individuals with disabilities or chronic diseases as an assistive technology but few studies have focused on the experience of the caregivers of service dog recipients. Caregivers of individuals with disabilities or chronic diseases may be subject to both psychological and physiological stressors as a result of their caregiver duties.

• Results found that caregivers perceive both benefits to themselves and to their families in terms building a bond with the animal that helps to reduce worry and offers emotional support. The most commonly mentioned drawbacks include general maintenance of the service dog, grooming needs and travel restrictions.

• This research is important in order to offer appropriate support to caregivers of individuals with disabilities.

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