Interviews with family caregivers of older adults: Their experiences of care and the integration of assistive technology in care

Abstract

BACKGROUND:

Consequences related to caregiving are multidimensional. Ways to reduce burden should be investigated, such as the use of assistive technology (AT). AT can decrease family caregiver burden, but there are multiple barriers to their uptake. A mixed-method project was launched to understand the needs of family caregivers and how could technology provide support. This study draws from qualitative data of this project.

OBJECTIVE:

To understand the experience of care provision and the integration of AT in the care provided by family caregivers.

METHODS:

Participants had to have provided care to an older adult or be an older adult providing care. Data collection consisted of semi-structured interviews on the caregiving situation and use of AT. A thematic content analysis was conducted.

RESULTS:

Fifty-nine family caregivers were recruited. Three main themes were identified: ‘Responsibilities of Caregiving’ described that family caregivers assisted in all areas of their care recipient’s life. ‘Caregivers’ Challenges and Rewards’ portrayed the challenges experienced by family caregivers and identified positive caregiving activities. ‘Strategies to Address Responsibilities and Challenges’ illustrated two main strategies to face challenges: sharing caring and using AT.

CONCLUSION:

The variability in care provision and challenges encountered should be taken into consideration when developing AT.

Keywords

Aging caregiving assistive technology qualitative research

1. Introduction

Family caregivers frequently include spouses, child- ren, and other family members [1] but, sometimes, care is provided by friends, acquaintances or other relatives [2]. Family caregivers provide a broad range of unpaid assistance to a significant person living with a disability, a chronic condition or an aging related need [3]. Nearly half of all Canadians will provide care for a relative with a long-term health condition at some point in their lifetime [1]. Needs related to aging is the most common problem for which family caregivers provide care [1, 4]. The prevalence of family caregivers is expected to increase exponentially since the proportion of Canadians aged 65 years old and over is expected to grow from 17% [5] to almost 23% by 2030 [6], and 40% of care recipients are aged 65 years old and older [4]. The replacement value of the unpaid economic contributions of family caregivers in Canada was estimated to be $25–26 billion in 2009 [7].

Caregiving has psychological, social, physical and financial consequences. Family caregivers often feel anxious, tired, irritable and overwhelmed [1] and report distress associated with their role [2]. Caregiving has been associated with depressive symptoms and decreased cognitive functioning [8, 9]. Regarding financial impacts, 7% of those caring for a parent and 20% of those caring for a spouse report financial hardship [10] and almost half report cutting back on necessities to enable care provision [11]. Caregivers, especially women, often take time off work to provide care [4, 12]. Considering the multidimensional consequences related to the care [13], finding ways to reduce family caregiver burden is critical.

A strategy to address family caregiver burden is the use of assistive technology (AT). Gitlin’s [14] definition of AT includes assistive devices (device used by a person to improve or maintain functional abilities, e.g. wheelchair), special equipment (equipment that is directly attached to a structure, e.g. grab bars), structural alterations (modifications to a structure, e.g. widening a door), material adjustments (modifications to the unfixed features, e.g. removing a rug) and environmentally-based behavioural modifications (modification of the interaction between the person and the environment) [14]. The use of appropriate AT can decrease family caregiver burden [15, 16, 17] by reducing the amount of time or energy devoted to caregiving tasks and increase the independence of the user, among other things [15, 16, 17]. AT can have a positive influence on psychological effects on family caregivers by reducing anxiety [17]. However, there are multiple barriers to the uptake of AT by family caregivers, namely, lack of awareness of what is available, cost, low impact on care, and lack of time to learn [18, 19]. Thus, a multi-site mixed-method project was launched across Canada named Innovative Technology for Caregivers (INToCARE). The purpose of INToCARE was to understand the needs of family caregivers and how could technology be used to meet those needs. The study presented in this manuscript is the first of three and draws from one set of qualitative data of INToCARE. The aim of this study is to understand the experience of care provision and the integration of AT in the care provided by family caregivers. The following study will define the technologies that meet the needs identified in this study, and this, in terms of existing technology, to modify or develop. Finally, the third and last study will identify which technologies that should be prioritized for research and development.

2. Method

The primary means of data collection for this study was semi-structured qualitative interviews. These were supplemented by qualitative data collected as part of the administration of the Caregiver Assistive Technology Outcome Measure (CATOM), which measures the impact of AT on frequency of perceived burden of caregivers. This study was approved by the Research Ethics Board of the Rehabilitation and social integration research center of the Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale (#2016-581, RIS_2015-428) and the Behavioral Research Ethic Board of the University of British Columbia (#H15-01164). The Standards for Reporting Qualitative Research (SRQR) were used as a reporting guideline [20].

Participants needed to be able to communicate in French or English, be at least 19 years old and provide or have provided care to an older adult or be an older adult providing care to an individual of any age. A purposive sampling selection strategy of potential participants was used when selecting family caregivers to include in the study. Therefore, family caregivers were selected in order to obtain a maximum theoretical variation [21] in terms of diagnoses of the person being cared for (i.e., physical, cognitive, both), relationship with the care recipient, the amount of care provision and region in Canada. Participants were recruited via rehabilitation centres, family caregiver support groups, disability and diagnosis specific organizations, social media and by word of mouth. There were two sites of recruitment and data collection in Canada: Vancouver for English-speaking participants and Quebec City for French-speaking participants. Participants received the information about the project and completed the evaluation session in the language they preferred. A free translation of the French citations was made for the purpose of presentation in this manuscript.

Data collection consisted of a sociodemographic questionnaire, a semi-structured interview and the Caregiver Assistive Technology Outcome Measure (CATOM) [22]. During the administration of the CATOM qualitative data were collected about their care situation and assistive technology use. Participants gave their written informed consent and completed the sociodemographic questionnaire before completing the evaluation session (including the interview and the CATOM). Caregivers could choose to complete the evaluation session over the phone or in person if they lived nearby research sites. The evaluation session was recorded (audio) and verbatim transcriptions were made, in which all identifying information was removed. Four trained research assistants conducted the evaluation sessions between November 2015 and October 2017. Some of these research assistants had previous contact with participants for recruitment purposes.

Sociodemographic data gathered included questions on age, sex, diagnoses, language, education, income, marital status, employment, relationship with care recipient, living situation and use of formal home care. The interview consisted of open-ended questions. Family caregivers were asked to talk about their current caregiving situation and the activities they found challenging and in contrast, enjoyable. They were asked about their current use of AT and what they thought of these AT. The interview guide evolved over the course of the study to reflect our ongoing analysis (see appendix A for the last version of the questionnaire). Questions for which answers from caregivers were not elaborated were adjusted or removed and some questions were added based on the information provided by caregivers that we did not think of beforehand.

An inductive thematic content analysis was conducted, based on the method suggested by Paillé and Mucchielli [23], in order to explore the experience of care of family caregivers and their use of AT. Data analysis was conducted in English for both French and English data. A three-step process was used to develop the coding guide. Three interviews were coded individually by three members of the research team (MB, BM, RD). Each developed their own initial codes and these were subsequently discussed to reach consensus as to which codes would be kept, modified and deleted thus creating a preliminary coding guide. After this guide was used to code six additional interviews, members of the research team and research assistants further refined it to create a final version of the coding guide that was applied to all of the transcripts. A final analysis was made of the coded interview by one member of the research team (MB). Citations from family caregivers were used to illustrate the results. Pseudonyms have been used to protect the identity of participants.

We implemented two main trustworthiness strategies in this study. As a form data triangulation we collected data from two different sites (which had different cultures and health-care systems) and included a heterogeneous sample of caregivers. As a form of researcher triangulation data were collected by multiple interviewers and a large authorship team was involved in the analysis of the qualitative data.

3. Results

Fifty-nine family caregivers participated in this study. The sociodemographic profile of caregivers is presented in Table 1. The majority were female (68%) and provided help to a partner (47%) or a parent (34%). The sociodemographic profile of care recipients is presented in Table 2. Almost a quarter (22%) reported having more than one health condition. The majority had a diagnosis of dementia (37%) followed by a diagnosis of cardiovascular disease (20%).

Table 1
Sociodemographic profile of the 59 caregivers

Characteristics	N caregiver	N missing data
Mean age	64 $\pm$ 11 years	1
Sex		–
Female	40
Language		–
English	40
Education		4
$<$ high school diploma	4
High school diploma	9
Trade diploma	3
College, CEGEP, other	12
non-university diploma
University diploma below	4
bachelor’s level
Bachelor’s degree	14
University diploma above	7
bachelor’s level
Prefer not to answer	2
Income		–
$<$ 14 999$	2
15 000–29 999$	7
30 000–44 999$	12
45 000–59 999$	10
60 000–74 999$	7
$>$ 75 000$	15
Prefer not to answer	6
Marital status		5
Married	33
Living common-law	6
Widowed	4
Divorced	4
Single (never married)	7
Employed		1
No	34
Relationship with CR		2
Spouse/partner	28
Son/daughter	20
Parent	3
Cousin	1
Close friend	4
Neighbour	1
Living with CR		3
Yes	37
Caring for more than one individual
Yes	7

Note. N $=$ Number of, CR $=$ Care receiver.

Table 2

Sociodemographic profile of the primary care receivers

Characteristics	N care receiver	N missing data
Age	74 $\pm$ 13 years	1
Sex		5
Female	30
Male	23
Other	1
Diagnoses
Arthritis	5
Cardiovascular disease	12
Chronic bronchitis,	3
emphysema or chronic
obstructive pulmonary disease
Diabetes	3
Cancer	5
Dementia	22
Neurological diseases	11
Urinary or bowel incontinence	5
Digestive disease	2
Developmental disability	3
or disorder
Injury resulting from	8
an accident
Aging/old age/frailty	2
Formal home care		–
Yes	38	1

Note. N $=$ Number of.

Three main themes were identified. The first two themes, as well as part of the third theme allowed us to develop an understanding of the experience of care provision, the first part of the objective of the study. The third theme addressed the second part of the objective which was to understand the integration of AT in the care provided. ‘Responsibilities of Caregiving’ described how caregivers assisted in many areas of the care recipients’ life, with some factors modulating the type of help needed. ‘Caregivers’ Challenges and Rewards’ portrayed the daily challenges experienced by caregivers, such as mental and physical strain and the need for external assistance but identified positive aspects of caregiving. ‘Strategies to Address Responsibilities and Challenges’ illustrated how caregivers used a variety of strategies to deal with their daily challenges, including the use of AT.

3.1 Responsibilities of caregiving

3.1.1 Responsibilities

Caregivers reported providing help to care recipients in all areas of life including basic activities of daily living (BADL) (e.g., eating, washing, dressing); mobility (e.g., walking or wheeling inside, transferring from a surface to another, using the stairs); instrumental activities of daily living (IADL) (e.g., domestic activities such as meal preparation, grocery shopping and household chores); work and leisure.

In addition to providing help in activities, caregivers reported providing surveillance or supervision. Surveillance was more indirect: it corresponded to a caregiver monitoring a task from a certain distance. Erin, who provided care to her aging partner, gave such an example: “I call him during the afternoon a couple of times and after that I finish work at 8 PM.” Supervision was more hands on, when the caregiver was involved and present during the task and provided verbal cues and/or intervened when necessary.

Caregivers were proponents. They reported advocating for their relatives to defend their needs, rights, appropriate care, living arrangements or AT needs. The experience of advocacy by caregivers was varied and challenging. Callie, who provided care to her mother living with dementia, gave such an example:

So I explained what happened and the homecare coordinator said well we’ve had some issues in the past and she believed what I said so that was the end of it. And then she immediately sent someone else. But you know if my mother didn’t have an advocate, such as myself and if she would’ve phoned her healthcare supervisor, [like] all in health care, they’re overworked.

They reported advocating for their own needs in order to be able to enable them to provide care, such as external support, respite, social connectedness and more. They championed their need to pursue activities that were important so as to remain healthy themselves. However, some caregivers did not advocate for themselves because they focussed only on the needs of their relative. Claude, who provided care for his wife living with dementia, explained this situation:

Because caregivers don’t think about themselves. They only think in terms of the person they are caring for. If you’d ask me, ‘What 6 things could you use to help you out?’, I probably could give you 10 or 12. But what do I need?

This highlights how it may be difficult for caregivers to be aware of their own needs.

Individually, caregivers identified some activities that were more burdensome than others. Ava, who provided care to her wife living with dementia, gave an example of an IADL she found especially burdensome:

Every day is different, yes. I was pureeing it [food] for a while, but then she didn’t like that for whatever reason. So I went back to not pureeing, but then she wouldn’t eat it as much. Every day is different. Not knowing what to provide for her is challenging.

Some caregivers conveyed that it was not individual activities that caused their burden but the accumulation of all the tasks they had to accomplish. Rick, who provided care to his wife living with dementia, expressed this situation: “I guess it’s not one particular thing, it’s just the fact that you have to do everything.”

3.1.2 Factors influencing responsibilities

Some caregivers perceived that it was their role to take care of their relative, and consequently, that caregiving was a natural activity. This is the case for Don, who provided care to his wife living with dementia: “It’s natural, that I take care of my wife. It’s like caregiver, but caregiver, it’s not a title, it’s part of us. If I was in her place, she would do the same.” However, this was not the case for many caregivers who explained that they found it difficult to accept the changes they had to make over time in their lifestyle to complete their caregiving activities. For example, Jane had a profitable career before she started caregiving for her mother living with dementia: “So from going from a 39-year-old professional money-making machine with a promising career that would have led to more money slowly over the years that is dwindling away.”

Activities carried out by caregivers and the level of assistance in an activity depended on the capacities of the care recipient as many were still independent in some activities. Some caregivers mentioned that care recipients had fluctuating capacities from one day to another, whereas others had more stable conditions, which made caregiving more routine. This was the situation experienced by Edgar, who provided care to a friend living with a neurological disease. He explained: “Obviously, when it’s been 34 years that we know each other, he adapts to me, I’m adapting to him. It’s routine movements.” Some caregivers mentioned that their care recipients that were still independent for one or multiple activities wanted to continue to perform these on their own for as long as they could. In these situations, caregivers respected their relative’s wishes and offered support accordingly.

Another factor influencing the involvement of the caregiver in the task was the interaction between the nature of the tasks, specifically intimate ones, like toileting, and the relationship the caregiver had with the care recipient. For example, Suzy, who provided care to her partner living with dementia, explained that she would not want anyone else to take care of her husband’s bowel routine: “Yeah, it’s not a big job but I mean I wouldn’t be asking a neighbour to do it or anything, or I’d want my kids to do that.” For a child, like Rose, who provided care to her father living with dementia, she perceived that his father did not appreciate that his daughter had to help him use the restroom:

It’s really difficult because no father wants their son or daughter wiping their bum. They just don’t. And it’s painful for him to be in this position where he has to have people doing that for him. He hates it. He finds it embarrassing.

Care recipients did not always live with the caregiver; some lived in assisted living facilities. In these residences, they received varied amounts of private care services which modify the involvement of the caregiver. Elliot, who was caregiving for his friend living with arthritis and diabetes before and after his admission in an assisted living facility, said: “It’s been a year and a few months that he is in a facility, but before, he was at his home I was not helping to feed him, but I bought the food […]”. This citation highlights that some caregivers continued to provide help when their relative moved to an assisted living facility, but the tasks were different.

Participants described how their personal characteristics (e.g., academic training), current work status, abilities developed in their life, and past caregiving experience influenced how they provided care and the burden they experience. Cecilia, who provided care to her mother living with a neurological disease, explained how her past employment influenced her caregiving: “I think most people kind of learn how to do things quite easily, you know. I think the advantage of being a nurse was that like, I could understand.” Personal characteristics of caregivers, such as their health status, spirituality, support system and personality, as well as their age difference and relationship with the care receiver could influence the help provided or how it was provided.

3.2 Caregivers’ challenges and rewards

3.2.1 Challenges

An important challenge for caregivers was the mental strain associated with caregiving. The main feeling expressed by caregivers was worry. It could be directly linked to a specific activity or situation, or it could be a general feeling associated with the caregiving role. The latter happened to Robert, who provided care to his wife living with dementia:

So it’s the emotional side I think that’s hardest and I think that people you know sit and say I did her laundry and I took her shopping and I did this and I did that, but that’s nothing compared to the emotional stress of worrying every day or getting a call from her in the morning because I haven’t been there, and I can’t go that day or if I do, I start having no life at all, so it’s that constant stress, the turmoil is hard.

Caregivers’ situations were all different, consequently, so were their worries and reasons to worry. Mainly, caregivers were anxious about anything that could affect the health and safety of their relative, such the amount and type of external help received or the performances of specific activities. For example, Amelia expressed some of her concerns about her husband living with a neurological disease: “Always a bit of concern and you know earlier on when he was still able to stand somewhat, you know there was certainly fear that he would fall, or that something would go wrong and he would be hurt.” Caregivers stated that they became accustomed to their relative needing help for certain activities that made their concerns decrease over time. In sum, worrying was a negative emotion felt by many caregivers but the reasons and the intensity of worrying fluctuated in time.

Caregivers described being overstretched because of the multiple responsibilities they had (e.g. juggling caregiving responsibilities and their other responsibilities, such as housework). Garrett, who provided care to his partner living with cancer and incontinence, expressed this situation:

It’s because in some periods sometimes I don’t have the time to do, it’s not necessarily my leisure activities, I don’t have the time, I am not able to do everything during the day what we should have done. Especially when we add the lawn and stuff like that.

For many, it was the need to be constantly ready to help that made it difficult to take time to accomplish other activities. Caregivers reported that their role limited their involvement with people important to them, which resulted in the feeling of being left out. They spent time anticipating how the situation would change over time. Some wondered how they were going to be able to help their relative if the situation got worse and what if the solutions currently in place were not enough. Others planned ahead foreseeing what their relative might need in the future.

Other negative feelings were expressed by caregivers such as sadness, depression, exhaustion, frustration, guilt and feeling queasy or underappreciated. Meredith used the metaphor of the prisoner to express the negative feelings associated with the care of her parent living with dementia: “That would be, at this point, it’s you know, to me, it’s the flip side of prisoner, when he’s here I’m not allowed to do anything.”

Caregivers reported experiencing physical strain due to caregiving. Some experienced mild difficulties and others experienced great physical strain when helping their care recipient either because of the tasks or because of their own health condition. Flora, who provided care to her partner living with a neurological disease and a cardiovascular disease, hurt herself while caregiving: “He has to pay attention because I have less strength and I can’t still help him as much as I could. And you see I broke my wrist dressing him.”

3.2.2 Rewards

Caregivers conveyed their enjoyment when helping relatives with certain activities. To begin with, leisure and social activities with the relative, especially outside the home, were reported as positive interactions. Sharing a meal, having a discussion or reminiscing provided satisfaction to caregivers. Some enjoyed shopping for their relative or grooming tasks, such as dressing and combing hair. Jane, who provided care to her mother living with dementia, enjoyed her role in general: “The cooking, showering, it’s all fine. It’s just that I always have to be on. I don’t really mind any of the tasks, I don’t, I guess they’re all kind of enjoyable in their own way.” It is important to note that not all caregivers could identify enjoyable caregiving activities. Lexie, who provided care to her husband living with dementia, did not enjoy that role:

I’d say none. Personally, personally, I’m not a caregiver. I’m not, I mean I have a child, and I enjoy the mothering, a caregiving role, but with a husband, I don’t enjoy any of it. And I’m not that type of person that I need to be a caregiver.

Several caregivers indicated that they experienced personal growth as a result of caregiving. They reported finding caregiving satisfying, enriching and stimulating, such as Edgar, who provided care to a friend living with a neurological disease:

I continue to do so. It’s just to give you an idea; I’m hooked! I like to help and it has enriched me in many ways. I do a lot of volunteering in different organizations. And it’s my favourite hobby. So, in my personal development, I would say it made me more patient, closer to the young people, their reality, no matter their reality. That’s what I would tell you. It enriched me and it stimulates me.

As a result of their role, caregivers reported feeling more confident, resourceful, mature, assertive, patient, empathic and human. Caregivers stated that they perceived the relationship with their relative more positively and helped in developing relationships with other family members. They learned to use their time differently, to take the time for some things and let some others go. Caregivers conveyed seeing life differently and developing a sense of purpose. One reported having greater faith that helped him through difficult times as a caregiver.

3.3 Strategies to address responsibilities and challenges

3.3.1 Sharing caring

A strategy reported by caregivers to support them in their caregiving task was to share the responsibilities with their social network (friends, family) or paid help (services). Examples of reported services used by caregivers are homecare workers (including health care providers), courses for caregivers (e.g., on diseases, on AT use), association and community organizations, support groups and grocery deliveries. Some of these services are directed toward the care recipient but were set up and supervised by the caregiver.

It was possible for some caregivers to organize this type of help. For others, the need was still present or only partially filled. Harold, who provided care to his partner living with a cardiovascular disease, found it difficult to find help: “So often you will deprive yourself of outings because […] you don’t have the ease to have someone.” Multiple factors reported by caregivers could explain why needs were not filled, namely availability of help, lack of family or social support, money, type and quality of the relationship with family members, and the fact that caregivers are hesitant to ask for such help. Caregivers reported that sometimes their relative was reluctant to be assisted by an external resource other than the caregiver.

For some caregivers, there was a need to coordinate the different sources of help, from services and from social network. Alfred, who provided care to his mother living with dementia, explained: “My mom lives with my dad so he spends the majority of the time with her, however, each of us go home a few times a week and take almost like shifts, caregiving for her.” The care was planned for some caregivers at certain moments during the day, week, or month. This situation was especially applicable to services. For other caregivers, the care varied from day to day: they called for help either for a specific task (e.g., preparing meals, transfers), at specific moments (e.g., when they are absent) or just whenever they needed support.

3.3.2 Use of AT

Another strategy was the use of AT. Some AT was used only by caregivers, such as gloves to put on support stockings, doors with sensor alarms or transfer belts. Other AT was used by the care recipient to support his performance of different tasks. Often, the caregiver provided help or supervision during the use of these devices such as a commode, a manual wheelchair or a pill dispenser. Here, Harriett explained that she had to prepare the tasks (e.g., cutting the food) for her husband, living with an injury resulting from an accident, when he used his feeder:

I help him with a device, a feeder we call it, it’s…I cut his food, I dismantle it so that he can, because he can’t cut with that, but he can eat with a fork that is a swivel that it’s called, and a spoon that moves, that turns at the same time and that gets level when the food is…It has to be a device that is at the level of his arm so that he can eat.

Figure 1.

Benefits of assistive technologies and services reported by caregivers.

Figure 2.

Problems related to assistive technologies and services reported by caregivers.

AT was integrated into a wide variety of daily activities. AT was used for the performance of BADL (e.g., motorized bath bench, basin, shoehorn), IADL (e.g. pill dispensers, stove with locking oven and burners, adapted vehicle, intelligent thermostat), mobility (e.g. slide sheets, patient lift, grab bars, rollator, hospital bed, access ramp), and work/leisure (e.g. head control mouse). Some AT was used specifically by caregivers and care receivers for the purpose of supervision or surveillance such as a pocket finder (GPS), video monitoring and a fall monitoring system. Some AT was used to support the realization of multiple activities such as computer related technologies (e.g. spreadsheets, videoconference, online care coordination tool, online calendar), automatic lights, cellphone, reminders (alarms), call bell and communicating devices.

3.3.3 Impact of AT and services

Some AT and services allowed caregivers to feel reassured or relieved when using them. Caregivers reported appreciating not to have to do the physically demanding tasks, to have a service available and responsive in case of an emergency and to have respite that gives them time to do other tasks. Preventing deconditioning of the care receiver was another reason for using AT, which was the case of Claude, who provided care to his wife and his aging mother-in-law: “Well it’s maintaining her strength and her mobility and all of that. Cause she has broken both hips and she’s 101 and she’s still walks well, with her walker.” Ten main benefits of AT experienced by the care recipient, the caregiver or both, were identified. Fig. 1 presents these benefits.

Despite the benefits experienced when using AT and services, there were some barriers to their use. First, there was sometimes reluctance toward their use by either the caregiver or the relative. Causes of this reluctance reported by caregivers were a lack of interest in AT, the negative perception by others when using AT, the maintenance required for the AT, the involvement of a stranger (when using a homecare service for example), the cost of AT or service, and the fact that AT use could be more time consuming than human help. Flora’s partner, who lives with a neurological and cardiovascular disease, felt AT compromised his sense of independence:

[Right now we don’t use any AT] because as I told you even if we have the lift, we don’t use that. Not at the moment anyway because he wants to continue to, he tells himself that by doing it, even if it is a lot of effort, he tells himself that as long as he can do it uh he wants to maintain a relative autonomy.

Reluctance could be overcome sometimes. Demi is an example of someone who was initially reluctant to use devices but with her mother who lives with a cardiovascular disease she said:

And then my brother did something that was absolutely wonderful. And my mother was opposed to this at first, but then, once it was done, she loved it. He made a railing on both sides of the hallway of her house and like, long before Mom had to go to the walker, she used that railing all the time.

A second barrier was related to the technical issues with AT, which are detailed in Fig. 2. Harold, a caregiver for his partner living with a cardiovascular disease, gave an example of malfunctioning AT:

You have to replace them at least once a year, I always have 2 [batteries]. One on the charge and one in the bath because I was stuck once. I got it down and when it came time to raise it. Dead batteries.

Caregivers experienced problems with services. Alicia, who is taking care of a number of older adults with dementia and other disabilities, had a particularly negative experience with services:

I mean how am I supposed to know like how to get support help, home support help, when home support help is being cut every month, in half, in half, in half, they used to do this, they used to do that, and the relatives here will go do housekeeping, oh good. They’ll help Mum get back, oh good. They’ll do this, they’ll do that. All of that just disappears. No financing. They’re all cut out. What they get 15 minutes, deliver the medication, walk in, walk out. No human contact, no human socialization. It’s the most inhuman, despicable service.

Arthur’s dissatisfaction was mostly related to the quality of the service provided. There are multiple other problems encountered by caregivers with services which are listed in Fig. 2.

Finally, some caregivers perceived that they had to encourage, or even police the use of AT. This is what Aria had to do for her mother living with arthritis and a cardiovascular disease: “We just presented it as how about we buy this and we keep it and if something changes and you need it it’s here. So that’s kind of got on board with it and we really, really encouraged it.” Other roles caregivers felt they had regarding the AT were taking care of it (washing, repairing) and making sure everything worked. However, a few caregivers perceived they had no role regarding the use of AT by their relative.

4. Discussion

This study aimed to understand the experience of care provision and the integration of AT in the care provided by family caregivers. Even though most of the interview questions pertained to the use of AT, family caregivers had much to say about their experience of their current caregiving situations (responsibilities, challenges, etc.). AT are integrated in the experience of care of family caregivers: they were considered as one of the solutions to help meet the responsibilities or challenges they encountered. This explains why most of the results are related to the first part of the objective of the study, namely to understand the experience of care provision. The following studies of the INToCARE project will better define the technologies that meet the needs identified in this study and identify which technologies that should be prioritized for research and development.

The first theme ‘Responsibilities of Caregiving’ describes how family caregivers could be involved in all the activities of their care recipients’ lives. This is consistent with current literature which shows that family caregivers frequently provide help in IADL, such as meal preparation or housework, and in BADL, such as eating or bathing [2]. In the current study, it was not possible to identify and generalize which specific activities were considered as more burdensome by most family caregivers. This leads to the observation that each family caregiver situation is unique. Each family caregiver and care recipient have their own characteristics and live a specific situation that determines the amount of help that has to be provided as well as the challenges they face. We identified some factors that influence the care experience, including perception of the care provided as a natural activity ensuing from a role (e.g. the role of spouse). This is consistent with the results of Cherry et al. who documented in semi-structured interviews with family caregivers of individuals living with dementia that the experience of caring for the other “[felt] right within the context of the cycles of their own life and of their relationship with the person with dementia” [24, p. 71]. They named this process ‘symmetry’. Cherry et al. observed that being a family caregiver did correspond to the sense of self of some individuals, but it was not the case for everyone as it threatened the sense of self of others [24]. In our study, we observed a similar pattern, presented in the subtheme ‘Rewards’; some family caregivers felt this role was right for them and others felt an inadequacy between their role and who they are. Another factor observed and documented in the literature is that the relationship with the care recipient (e.g. being a spouse vs being a child) influences the experience of care. Lin and colleagues documented that the experience of adult-child caregivers was more negative than the experience of care of spouse caregivers [25]. This is congruent with the findings of the current study.

The theme ‘Caregivers’ Challenges and Rewards’ portrays the challenges encountered by family caregivers as well as the positive activities of caregiving; some of which are consistent with literature on caregiving. First, the mental strain of family caregivers that we documented in the current study has already been documented in multiple studies [1, 2, 8, 9]. Our results are especially aligned with results from Canadian statistics where it was documented that family caregivers often feel anxious, irritable and overwhelmed [1] and report distress associated with their role [2]. Physical strain has been previously documented [26]. The need for external help was a challenge closely intertwined with the use of services and problems experienced in their use, such as a lack of availability. This is consistent with a study documenting the structural burden of care both in the United States and Canada that shows that caregiving is characterized by management and negotiation of services [27]. Regarding positive experience of care, a critical literature review documented positive aspects of caregiving for individuals with dementia in two broad areas, namely ‘from the caring itself’ and ‘from the dynamic between the family caregiver and the person with dementia’ [28]. These included satisfaction, personal and spiritual growth, competence and mastery, emotional rewards, relationship gains, satisfaction in reciprocity and fulfilling a sense of duty [28]. The rewards documented in this study were closely related to these categories, in particular, that of personal and spiritual growth.

The theme ‘Strategies to Address Responsibilities and Challenges’ illustrates strategies used by family caregivers to deal with their daily challenges. The strategies are congruent with evidence that family caregivers try to share care to address their challenges: it has been documented that family caregivers of older adults experience less burden when they feel that they have social support [29]. Regarding the use of AT, our results are aligned with those already published. In the literature, positive impacts of the use of appropriate AT include: reduced amount of time devoted to care, task difficulty, safety risk and increase user independence, etc. [15, 16, 17]. However, a systematic review on the impact of AT use on family caregivers’ burden showed that AT could add to the family caregiver’s burden [17]. There are multiple barriers to the uptake of AT by family caregivers that have been documented and that are consistent with the negative impacts documented in this study, namely, lack of awareness of what is available, cost, low impact on care, and lack of time to learn how to use it [18]. Therefore, when introducing or developing AT, the potential positive and negative impacts should be considered in order to integrate the AT such that it enhances relationships between a family caregiver and a care recipient, not cause extra or undue burden. Another important observation from the interviews that needs to be considered when creating AT is the uniqueness of family caregivers’ situations, which indicate high variability in the challenges and needs they face.

The study had several limitations. It is based on a large heterogeneous qualitative population; therefore, we documented a wide variety of experiences. However, we might not have met theoretical saturation for each caregiving situation (e.g. caregiving for a person with dementia, for a parent, for someone with a physical disability). The results might not be transferable to every caregiver since only those speaking French or English were included. Finally, there could be a recall bias as family caregivers we asked about their general experience and some were past caregivers.

5. Conclusion

This study highlights the activities in which care is provided by family caregivers and the multiple factors that modulated the care provided. Caregivers faced daily challenges, but positive activities were still experienced. Two main strategies were used by family caregivers to face the daily challenges, namely sharing caring and the use of AT. The high variability in caregiving situations and challenges encountered should be taken into consideration when developing future AT to support family caregivers.

Footnotes

Acknowledgments

We would like to thank Josiane Lettre and Randa Dalle for their support in the data collection and analysis. This work was supported by Aging Gracefully across Environments using Technology to Support Wellness, Engagement and Long-life network (AGE-WELL Networks center of excellence; grant #AW CRP 2015-WP2.1) and the Canadian Institutes of Health Research (summer scholarship obtained by Maude Beaudoin; SMA-146135). François Routhier and Claudine Auger had salary support from Fonds de recherche du Québec– Santé (FRSQ) Research Scholar (Grants #34699 and #32988). W. Ben Mortenson was supported by a New Investigator Award from the Canadian Institutes of Health Research.

Conflict of interest

The authors report no conflicts of interest.

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Interviews with family caregivers of older adults: Their experiences of care and the integration of assistive technology in care

Abstract

BACKGROUND:

OBJECTIVE:

METHODS:

RESULTS:

CONCLUSION:

Keywords

1. Introduction

2. Method

3. Results

Table 1 Sociodemographic profile of the 59 caregivers

3.1.1 Responsibilities

3.1.2 Factors influencing responsibilities

3.2 Caregivers’ challenges and rewards

3.2.1 Challenges

3.2.2 Rewards

3.3 Strategies to address responsibilities and challenges

3.3.1 Sharing caring

3.3.2 Use of AT

4. Discussion

5. Conclusion

Footnotes

Acknowledgments

Conflict of interest

References

Table 1
Sociodemographic profile of the 59 caregivers