The results of our analysis are presented below in terms of the extent to which caregivers’ experiences and perceptions of their tasks and activities align with the three roles identified in Twigg’s model. We also present the articulation of a fourth role for further consideration. Although the findings related to each role are described separately below, caregivers commonly described the fulfillment of multiple roles throughout their day-to-day activities. We also present the limitations or challenges they described in fulfilling these particular roles.
Caregivers as an (unpaid) resource
Although our interviewees started caregiving in different circumstances, many described becoming a caregiver as a gradual process or as a ‘natural’ role, which fits with the view of caregivers as a resource. In fact, few realized from the outset that the tasks they were performing were defined as caregiving in the health system. As Joanne states:
“I think that a caregiver doesn’t first of all doesn’t see themselves as a caregiver initially. You start off with good intentions of doing something that needs to be done or helping or you know because you love that person, you have a link with that person, a strong one; you’re concerned about them, you want to help”. (Joanne, 46 yrs old, cares for mother)
Most participants lacked prior caregiving experience, and all of our respondents reported a transition point where they realized that they were no longer simply “lending a helping hand”, especially when the care became more intense, specialized or frequent. This transition appeared to be a key moment in caregivers’ trajectories, leading to considerations for their role within the broader health system, as well as a factor in seeking help and additional resources, such as additional home care resources, physical adaptations to their home, or access to support groups. Yet as one participant stated:
“A lot of challenges … but it’s not something that you apply for, you sort of fall into it and it’s like on the job training but nobody has the manual”. David (68 yrs. old, caring for wife)
Caregivers reported limitations and struggled to continue in their role, to find information, and to be recognized by the healthcare system. Inadequate informational support was most commonly mentioned. Some expressed concern about their limited capacity or interest in caregiving; they feared being unable to respond to future needs or to adjust to care transitions and felt that they lacked adequate training to make decisions about medical care or needs. Caregivers were often not sure where to turn for the right information and answers to their questions; they often felt misled by suggestions that there was more help available than there actually was. Several interviewees knew little about services available to them. For example, Deirdre, though a social worker herself, had not thought of homecare until suggested by her counsellor.
Caregivers as ‘co-workers’
There was wide variation in the experiences and expectations of caregivers in our sample with regard to feeling part of the healthcare team. Several caregivers described a partnership-like relationship, feeling competent and empowered through sharing their own knowledge and information regarding the care recipient. In some cases, as for Mike, caregivers felt like an integral part of the healthcare team:
“But when we go to see her specialist together, we work as a team together the three of us, the three specialists together”. (Mike, 63 yrs old, caring for wife)
Caregivers cherished the value of this therapeutic alliance when it occurred. For instance, Drew was willing to drive 3 h to his mother’s physician because of their unique collaboration:
“So the practical reality of her condition is such that going to a GP’s office is not an option so we have a brilliant family physician, who has moved three times since I’ve been my mother’s guardian, and we continue to see him even though he’s three hours away by car … it’s such a good experience and support ... (to) go after hours when the clinic is closed I couldn’t do that without him making that available to us, which is brilliant”. (Drew, 38 yrs old, caring for mother)
Not all caregivers in this study described being engaged and supported as a co-worker. They were negatively affected when healthcare professionals did not take their concerns seriously, when they were excluded from medical decisions and when they were confronted with unrealistic expectations or negative remarks about their caregiver abilities. One key barrier noted by most caregivers was the lack of training to help manage their loved ones at home. Many were unfamiliar with basic minor medical procedures they were expected to carry out, and they were not always aware of the resources that were at their disposal until after a need had arisen. A number of caregivers spoke about their discomfort in being positioned by the health system in roles that they should not and/or could not fulfil. For example, Deirdre was uncomfortable performing certain procedures herself, such as subcutaneous injections, and found it difficult to manage the daily transportation of her husband, with severe COPD, for blood transfusions and intravenous antibiotics. Caregivers felt challenged by their limited knowledge, but at times, also by that of their healthcare team:
“So we’re educating the doctors but then it’s, it’s hard to be a pioneer because we’re not doctors and so when we push the edges of our knowledge, we’re also pushing the edges of their knowledge, because they haven’t dealt with this before.” (Claire, 37 yrs old, cares for husband)
Many caregivers questioned their own competency in being responsible for decisions that they believed should have been made by health professionals, or perhaps made together. For example, both Deirdre and Christiane were uncomfortable about their role in decision-making without the support of the healthcare team. Deirdre wanted healthcare professionals to decide when her husband should be admitted to a facility, but was left to tell him that he could no longer stay at home. Christiane needed more help and was not ready for her husband to be admitted to a long-term care institution, but was left without information or support to make a decision.
Lack of recognition for caregivers’ knowledge and expertise was another important challenge. Drew, for example, knew his mother would only be able to undergo a medical intervention if she could have an unlit cigarette in her hands to calm her down. He describes the struggle with the hospital staff to take him seriously and value his knowledge about his mother and her care.
“Well lo and behold we finally convinced them that if they wanted to get the scan done we were going to have to work together and I think there’s … the professional and clinical environment that says … “We’re professionals at a hospital we know what to do”. And it’s a little bit of discounting going on there that says well let us handle this. It didn’t work so well and really all it took in the end was for her to hold a cigarette in her hand for her a) to have a catheter without flinching, and b) to get an x-ray done. And so that wasn’t a positive experience.” (Drew, 38 yrs old, cares for mother)
Finally, tension arose for caregivers in a ‘co-worker’ role because, in contrast to health care workers who had professional responsibility for the care recipient, caregivers juggled roles in multiple domains and this created strain:
“I may not be here all the time as a caregiver, but I’m here all the time as a son and as a supervisor and as an employer – in some respects I guess a director of care from a clinical standpoint, for no other reason (than) the fact that we’ve done this for 34 years now” (Drew, 38 yrs old, cares for mother).
This interweaving of personal and professional responsibilities was a major challenge for caregivers:
“And that’s where respite comes in or help or something. Nurses have time off, caregivers don’t.” (Shayna, 66 yrs old, cares for husband)
Caregivers as ‘co-clients’
While most caregivers described how their health was negatively affected by the caregiving situation (such as fatigue, stress, and suicidal thoughts), they rarely expected help through the existing care team of the care recipient. Thus, while caregivers talked about the precarious and challenging balancing act of managing their own health needs, their social lives, and their care responsibilities, few saw themselves as co-clients. Yet, several caregivers described key moments when they received professional acknowledgement and/or support for their own needs as caregivers, which were highlighted as key to their wellbeing. For example, Marlyn was finally persuaded to arrange respite care every 3 months once her doctor convinced her to actually do it, which helped alleviate some of the guilt she felt. Fernanda felt great support when she was given ‘permission’ to hand over the care for her mother:
“I’ve had again some wonderful experiences … when I was at the end of my rope not knowing how I was going to help my mother and (this doctor) said ‘it’s time, you’ve done your part now it’s time for us to do our part.’ I mean how do I ever, ever, ever thank that doctor for … the kindness he showed me?” (Fernanda, 49 yrs old, caring for mother)
Many caregivers described substantial health impacts or health risks caused by their situation but had failed to seek support for themselves, for reasons such as lack of time or because they were unsure where to find support or did not feel entitled to such support unless it was offered by a healthcare professional. In some cases, the engulfing nature of the recipients’ needs precluded any care seeking for themselves. For Shayna, having the same health provider as her husband was problematic as she felt that his needs were prioritized, due to his disability, over her own.
Caregivers as ‘care coordinators’
Caregivers also spoke about dimensions of their work that could not be neatly subsumed within any of the three roles above, and which we have characterized as a ‘care coordinator’ role. Several caregivers described activities related to information gathering, functioning as the primary organizer, researcher or problem solver in determining best courses of action. Linda herself solved the mystery of her husband’s behavioural issues which were related to medication side effects, and she then led the effort to manage them. Others also assumed attitudes and responsibilities akin to that of a care coordinator.
“… the person needing the care is constantly running into problems trying to get, trying to do something and so you’re always sort of racking your brain trying to figure out well how else can we make this work? What can we do, how can we adapt this, what could I buy?” (Marlyn, 67 yrs old, caring for husband)
“You have to organize care. You have to help with some and you have to deal with a lot of processes and procedures, which don’t fit, they don’t connect.” (Mr. Smith, 62 yrs old, caring for mother-in-law)
Participants described challenges in having responsibility for navigating what they perceived to be a fragmented care system, and find solutions to manage the changing needs of their care recipients. Mr. Smith referred to the lack of accountability for continuity of care; he himself was the person making the connections between institutions and coordinating transitions and changes in care.
David spoke about making sure his wife was signed up for a clinical trial, organizing transport to and from the study site. Other caregivers described sorting out transitions to a care facility. Lillian and Michael described their challenges in coming to agreement with each other and with the healthcare professionals regarding the best treatment for their son’s epilepsy. Linda, described how her husband called her just in time from a respite facility for essential medication. In Barbara’s father’s case, she wanted to take charge of the situation but was powerless to change the course of action.
“Uh just before my dad died um he was in the hospital and he was in very bad shape and on oxygen and really not breathing well and, and the hospital I guess was very short of beds and really needed to empty out as many beds as they could; and so wanted to send him home. Well we lived an hour away from the hospital out on a country road. I’m like ‘are you mad?’ ‘My mum’s blind, I’ve got MS’ and I didn’t know who to talk to. … the nurses would agree with me he should not be sent anywhere. And so but ultimately they sent him home and he lasted maybe 4 hours before an ambulance was called to take him back to the hospital and when he got back within days slipped into unconsciousness and you know died sort of a week after that. I didn’t know who to go to, to stop this from happening; I knew it was going to be a disaster. He had huge bed sores on him that needed to be treated and I mean the whole situation was ludicrous...” (Barbara, 68 yrs old, cared for several people)
Mike describes how he brought his wife straight back to emergency after she was discharged. It was difficult for him and his wife but it needed to be done to make sure she received the right care. Barbara, Mike, Anne and others described unexpected situations where their expertise was not considered, they were unable to influence decision-making, and where they had to find solutions, even if disruptive to the patient and caregiver and costly to the system. Caregivers appeared to bear the costs related to decisions about optimal care arrangements. Being in the role of a specialized caregiver who is responsible for medical tasks at home made caregivers an important resource and partner in the provision of care, but also often elevated them to a role in care management or coordination.
Caregivers described the difficulties in fulfilling this care coordinator role when they had limited authority to make decisions, required additional resources, a deeper knowledge of the system or the healthcare problem, or help with communicating their needs.