Life adjustment.

The theme of Life adjustment involved two subthemes: (1) Acceptance and adaptation and (2) Altered perceptions.

Acceptance and adaptation. The sudden and unexpected nature of stroke often required rapid readjustment in the life of the carer. This was evident across studies where participants discussed the need to accept their caregiving role and life changes associated with this [7, 12, 27, 44, 50, 53, 55, 56]. The acceptance of the caregiving role was often followed by adjustment and adaptation to the daily routines, activities, and arrangements. Across studies, carers frequently discussed the need to adjust to their new life situation [7, 10, 12, 27, 29–31, 35, 37, 38, 41, 42, 44–46, 48, 50–55]. To adjust to the new situation, some carers reported modifying their sleeping arrangements, completing activities in the morning, or staying up late at night to be able to complete activities [37, 42, 46, 49, 51]. Within one study, carers described adapting their activities such as using online shopping instead of attending the grocery store and meeting up with friends in a location closer to their home [42].

Altered perceptions. The caring role often resulted in carers needing to alter their future plans and perspectives [7, 27, 31, 32, 34, 35, 37, 41, 42, 46–48, 50, 51, 57]. Across studies, many participants discussed the uncertainties regarding the future for themselves as well as for the stroke survivor [7, 27, 37, 41, 42, 46–48, 50, 57]. For some carers, they reported feeling uncertain about their own health [46, 57], concerns regarding the possibility of the person they were caring for having a second stroke [27, 41, 50], and whether the stroke survivors’ function would improve [42, 47, 50, 57]. The life adjustment and uncertain future led some carers to consider death of the stroke survivor or themselves as a form of ‘liberation’ [28, 31, 46, 47]. These thoughts were associated with guilt and were deemed by carers as taboo to discuss [31, 46].

Changing role and identity.

The theme of Changing role and identify included four subthemes: (1) Relational changes; (2) Duty, commitment, and obligation; (3) Sole responsibility; and (4) Losing sense of self.

Relational changes. Across most studies, carers discussed the impact of their caregiving role on their relationships with others such as the stroke survivor, family members, and friends [7, 12, 13, 26–28, 30–41, 43, 44, 46–48, 50–52, 54–57]. Participants suggested that becoming a carer resulted in a shift and change in the predefined roles or expectations in the relationship [12, 13, 27, 31, 32, 37–39, 46, 48, 50, 55–57]. This was evident for many participants providing care for their partner or parent who reported a clear shift in their relationship with the stroke survivor, evolving into a relationship that resembled that of a stranger, friend, or parent [12, 13, 31, 32, 37–39, 46, 55–57]. As a result, carers often reported experiencing a sense of relationship loss [12, 13, 31, 32, 35, 37–40, 44, 46, 50, 56, 57]. In addition, across studies carers suggested the changes in their relationship with the stroke survivor also led to loss of emotional support, intimacy, an increase in arguments, and lack of communication [12, 13, 27, 30–32, 37, 38, 40, 44, 46, 48, 50, 56]. Within studies, many carers reported experiencing frustration due to the change in the stroke survivors’ personality, cognitive, and emotional functioning, which also significantly impacted on their relationship with the stroke survivor [13, 26, 31, 32, 35, 37, 39, 43, 46, 50, 54].

Despite many of the relationship-based negative impacts that were reported, in some studies, carers also reported positive changes in their relationships with the stroke survivor and their family [12, 13, 30, 36, 38, 41, 44, 46, 48, 50, 52, 54, 56]. These positive changes included increased sense of unity and closeness with the stroke survivor [12, 13, 35, 38, 44, 46, 48, 52, 55, 56], improved communication [30, 41, 46], a stronger family bond [27, 36, 38, 41, 52, 54], spending more time with the stroke survivor [13, 30, 46, 48, 55, 56], and a greater appreciation of their relationship [35, 41, 50, 52, 55].

Duty, commitment, and obligation. Across 14 studies, carers reported that their reasons for taking on the caregiving role were related to a sense of obligation or duty and commitment to the stroke survivor [10, 13, 26, 27, 29–31, 36, 37, 44, 46–48, 54]. Within 11 of these studies, participants who were providing care for their parents or partner discussed a sense of responsibility and obligation to provide care as a spouse or child, or to “give back” to the stroke survivor [10, 13, 26, 27, 29–31, 36, 37, 44, 46]. Another reason for taking on the caregiving role was carers often reported feeling a strong sense of moral obligation or the need to fulfil their commitment to the stroke survivor [10, 13, 26, 31, 37, 44, 46]. In some studies, carers felt they were the best suited for the caregiving role or could provide better care than others [26, 27, 47], while in other studies, carers reported feeling as though they had no other choice or no one else could take on the caring role [29, 36, 37, 54]. Within four studies, participants discussed becoming a carer due to expectations from family members or society [13, 29, 30, 47]. Additionally, carers within four studies reported taking on the caring role to ensure the stroke survivor could continue to live at home rather than being placed in a long-term care facility [13, 26, 37, 44].

Sole responsibility. A common finding across studies was the assumption that the caregiving role often resulted in additional responsibilities [12, 13, 26–37, 39–57]. Across 17 studies, carers reported having to do “everything” on their own [26, 27, 30–32, 34, 36, 41, 44, 47–52, 55, 57]. These responsibilities included home maintenance [30, 32, 34, 35, 37, 40, 45, 47, 56], financial management [32, 45, 55, 56], meal preparation [30, 40, 47, 55, 56], and providing emotional support [48, 56] in addition to caring responsibilities [12, 13, 26–37, 39–57]. Carers often reported that there was a shift from shared responsibility to now being solely responsible for many tasks [27, 30–32, 34–37, 43, 50–52, 55–57]. Many carers identified that due to their caregiving role they were solely responsible for the care and decisions of the stroke survivor [27, 28, 32, 34, 41, 43–45, 47, 48, 50, 52, 56, 57], resulting in a state that was described as one of hypervigilance where many carers discussed having to be available and alert to the needs of the stroke survivor [27, 31, 37, 39, 41, 42, 45, 48, 50–52, 56, 57]. Within studies, participants discussed the additional responsibility of not only completing their own tasks but also those of the stroke survivor [30, 31, 47], this was labelled as ‘double duty’ within one study [37].

Across studies many carers reported that the additional roles and responsibilities impacted on their own health and wellbeing such as an increase in stress and anxiety, feeling overwhelmed, exhaustion, and isolation [7, 27, 30, 32, 33, 41, 56, 57]. Within one study, the concept of “role overload” was identified, indicating that carers often manage multiple roles and responsibilities [33]. Within 17 studies, participants reported that the caregiving role became their main priority resulting in the subsequent loss of other roles [12, 27, 30–32, 34, 40, 44–46, 49, 50, 52, 53, 55–57]. Within one study this concept was discussed as the “caring role takes over” [30].

Losing sense of self. The caregiving role was often described by participants as a ‘full-time’ job which impacted on their ability to maintain their previous roles such as being a parent [29, 33, 50, 51, 57], grandparent [27, 50], partner [27, 33, 44], child [44], friend [27, 50, 51], or employee [7, 32, 33, 36, 49]. Across studies, carers reported having to “juggle” multiple roles [32, 33, 44, 51, 53] which often resulted in what they described as uncertainty in their identity [12, 31, 40]. Some carers reported their loss of identity and meaning due to assuming the caregiving role which became the predominant role in their life [12, 31, 40, 46, 47, 53, 56, 57]. As a result of the demands of the caregiving role, and inability to fulfill previous roles, carers reported a loss in their individuality and, in some studies, carers questioned the meaning of their life [12, 31, 40, 44, 46–48, 50, 53, 55–57].

Changing activities: From meaningful to purposeful.

The theme of Changing activities: From meaningful to purposeful included three subthemes: (1) Impact of activity change; (2) Barriers to participation in valued activities; and (3) Enablers to participation in valued activities.

Impact of activity change. Across studies carers discussed the change in their activities since assuming the caregiving role, which resulted in an increase in participation in care-related activities as opposed to what they described as valued activities [30, 35, 40, 42, 45, 53, 55, 57]. In one study, carers discussed completing activities that were necessary as opposed to what they would like to complete [53]. Across five studies, carers reported their activities changed to be more of a rehabilitative nature as opposed to recreational [27, 30, 35, 45, 56].

Within the majority of the studies (n = 21), participants discussed that most of their activities now included completing care related activities such as assisting the stroke survivor with feeding, dressing, showering, toileting, transfers, and therapeutic activities (i.e., stretches, prescribed exercises) [7, 13, 26, 27, 30, 34, 35, 37, 39, 41–43, 45, 46, 48–50, 52–54, 56]. The impact of caring activities on carer health and wellbeing was noted in 24 studies [12, 13, 26–29, 32–41, 45–47, 49–51, 54, 56]. This included impacts on physical health such as higher levels of fatigue [13, 26, 29, 34, 36, 37, 39, 50, 54], reduced sleep [13, 28, 32, 34, 36, 37, 41, 45, 47, 49, 51, 56], increase in blood pressure [32, 36, 40], weight loss [13, 26, 32, 45, 56], pain [13, 28, 32, 36, 45, 56], care-related injuries [45], reduced food intake [13, 56], and exacerbation of chronic health symptoms [26, 29, 34, 38]. Across 21 studies carers also reported the impact of caring on their emotional health such as feelings of anxiousness [27, 28, 32, 40, 41, 47], stress [13, 27–29, 32, 37, 40, 41, 45, 47, 54, 56], feeling depressed [26, 32, 34, 38, 47], anger [27, 28, 47], frustration [26, 27, 36, 50], and panic attacks [34, 36, 54].

Across 34 studies, carers discussed having to cease or reduce participation in valued activities to focus on caring for the stroke survivor [7, 10, 12, 26–36, 38–57]. Activity loss was frequently reported across several areas including social activities (n = 20) [10, 12, 26, 30–32, 34, 36, 38, 39, 41, 42, 44, 49, 50, 52–56], leisure activities (n = 18) [25–27, 32–35, 42–45, 47–50, 53, 55, 57], and employment (n = 16) [7, 12, 26, 32–34, 36, 38, 46–49, 52, 54, 55, 57]. Across seven studies, carers discussed how the caregiving role impacted on their ability to complete their own health-related activities [32–35, 50, 52, 57].

Across 20 studies, participants discussed the loss or change to their participation in social activities [10, 12, 26, 30–32, 34, 36, 38, 39, 41, 42, 44, 49, 50, 52–56]. Carers in these studies perceived various repercussions of the caregiving role on their social life and ability to complete social activities, including loss of friendships [38, 39], difficulty scheduling time to socialise [34, 41, 42, 49, 50], and a lack of social contact from friends [12, 36, 41, 44, 50, 53]. The caregiving role and loss of activities impacted on their emotional wellbeing as carers described feelings of loneliness and social isolation [12, 27, 34, 38, 41, 47, 48, 57]. For the few carers who were able to maintain some of their social activities, this was reported to be a coping strategy and positively impacted on their wellbeing and quality of life [26, 50, 55].

Among 18 studies, carers reported a reduction or cessation of leisure activities such as traveling, dancing, studying, camping, arts and crafts, and attending movies [25–27, 32–35, 42–45, 47–50, 53, 55, 57]. Across 10 studies, the impact of reduced participation in leisure activities was reported to impact on carer health and wellbeing in ways including increased stress, sadness, frustration, and feeling confined [26, 32, 35, 39, 45, 47, 51, 53, 54, 57]. The lack of spontaneity, autonomy, and freedom to complete preferred activities was noted in nine studies [27, 35, 40, 44, 47, 50, 53, 55, 57]. Within 10 studies, carers discussed feeling trapped and confined to their house [7, 27, 32, 37, 40, 42, 44, 51, 53, 57], and within some studies this was described by carers as feeling like a “prisoner” in their own life or home [34, 46, 47, 57].

Carers reported ceasing or reducing their employment due to the physical and emotional demands of caring, this was noted among 15 studies [7, 12, 26, 32–34, 36, 38, 46–49, 52, 54, 55, 57]. As a result, carers experienced financial implications impacting on their ability to pay bills, purchase desired and necessary items, and affording the various costs associated with caregiving such as rehabilitation services [7, 27, 28, 32, 38, 47–49]. For carers who ceased employment, this was often done unwillingly and resulted in resentment, frustration, or anger [7, 33, 46, 57]. Those carers who maintained employment reported an increase in stress and impact on their wellbeing due to managing both caring activities and employment [7, 27, 32, 36, 49]. For other carers, employment was viewed as a crucial coping strategy to promote their mental and emotional wellbeing [12, 55].

A total of 10 studies reported on the impact of the caregiving role on their ability to complete health-related activities [28, 32–35, 45, 50–52, 57]. Carers discussed the reduction or cessation of activities such as playing sports [32, 33, 51], going for walks [34, 35, 50, 52, 57], exercising [28, 33, 35, 45, 51], and attending medical appointments [32].

Barriers to participation in valued activities. Across 20 studies, carers discussed the barriers to participation in valued activities [10, 27, 29, 30, 35, 37–40, 42, 43, 45, 47, 49, 50, 52, 53, 55–57]. Across studies the most commonly reported barrier to engaging in valued activities was viewing the care and needs of the stroke survivor as a priority [27, 29, 30, 37, 39, 40, 42, 45, 47, 49, 50, 53, 55, 57]. Within one study, this was described as carers “realising that the reduction of some occupations was necessary to manage the situation” [55]. Within other studies, carers reported that the effects of stroke such as reduced mobility, cognitive deficits, and emotional changes impacted on their ability to participate in activities with the stroke survivor or leave the stroke survivor at home to engage in activities [10, 27, 35, 42, 45, 57].

The lack of time and energy as a barrier to participating in meaningful activities was reported in 12 studies [10, 27, 35, 37, 39, 40, 43, 45, 47, 50, 52, 56]. Carers within three studies discussed the lack of “uninterrupted” time to pursue activities of interest [39, 50, 55]. Another barrier discussed across studies related to a lack of desire to participate in activities without the stroke survivor [10, 35, 42]. Within four studies carers reported feeling guilty when participating in valued activities when the stroke survivor could not also participate [29, 35, 37, 42]. Financial strain was reported within three studies as a barrier to participating in valued activities as carers often as a result had to reduce social and recreational activities [10, 38, 57].

Enablers to participation in valued activities. Enablers to participation in valued activities were reported in 14 studies [10, 27, 29, 30, 35, 41, 42, 45, 47, 48, 51, 52, 55, 56]. The carers’ ability to adapt and reprioritise their activities as an enabler toward participation in meaningful activities was noted in eight studies [10, 30, 35, 41, 45, 48, 51, 55]. Within studies, carers discussed strategies such as changing the time they complete an activity [45], prioritising shared activities with the stroke survivor [30, 35, 45, 48, 55], and rethinking priorities [32, 41]. Within one study carers discussed the importance of “being” with the stroke survivor which was prioritised over household tasks [55]. Within two studies carers discussed prioritising a particular activity such as employment over other activities [32] or refocusing on the meaning of family and relationships [41]. Carers within one study discussed the importance of re-evaluating priorities and used strategies such as travelling on motorised scooters and dancing in the living room with the stroke survivor [38]. Within three studies carers reported changing the way they completed their activities to enable participation, such as reducing the size of their garden, [55] using accessible campsites [30], or completing online shopping [42].

Across six studies, strategies such as planning, developing a routine, and being flexible were reported to enable participation in valued activities [10, 38, 39, 42, 45, 51]. Carers reported that planning ahead and taking precautionary measures facilitated success in resuming valued activities with the stroke survivor [39, 42]. Within two studies planning involved consideration of bus routes, availability of ramps, and sufficient circulation space for a wheelchair [42, 56].

Across five studies, it was noted that with time and recovery of the stroke survivor, carers were able to gain experience which allowed reengagement in valued activities [29, 35, 45, 51, 55]. Within two studies the recovery or improvement of the stroke survivor resulted in carers being able to resume valued activities such as travel [35, 52, 55]. The use of reliable paid and unpaid support was reported as a facilitator in seven studies which allowed carers to engage in valued activities [26, 27, 35, 42, 46, 51, 56].

Understanding and supporting carers.

The theme of understanding and supporting carers included three subthemes: (1) Carer priorities; (2) Positive aspects of caring; and (3) Coping strategies.

Carer priorities. The most frequent priority discussed across studies (n = 30) was the need for support, training, and services to assist with the caregiving role [7, 10, 12, 13, 26, 27, 29, 30, 32–40, 42–47, 50–52, 54–57]. Across eight studies, carers identified that lack of information regarding the emotional and physical impact of assuming the caregiving role often resulted in carers feeling unprepared and ill equipped [27, 32, 34, 36, 39, 45, 50, 52]. Within two studies, carers reported that health professionals often provided limited information and communication in the form of brochures and pamphlets which were often not useful [27, 36]. In some studies, carers discussed the need for financial and resource support from the healthcare system such as respite services [27, 32, 38, 45, 50, 56]. For carers who had access to paid support services, they reported that these services were often unreliable, had a high turnover rate, or did not provide quality care [42, 50]. Carers identified the need for realistic and useful strategies to implement in their daily life and information provided in a user-friendly or worthwhile manner rather than “generic” information, this was noted in four studies [27, 36, 50, 57]. Carers reported within two studies that they would like health professionals to instil hope rather than have a “pessimistic” outlook [38, 50]. Across five studies carers identified the importance of carer support groups to engage with others with similar experiences who can understand, listen, and talk through caring experiences [13, 27, 45, 50, 57]. Within one study a participant reported “there’s a lot of stuff to make the caregiver a better caregiver, but not necessarily to make the caregiver’s life any better” [45].

Across studies (n = 11) carers discussed how the caregiving role often left them feeling alone, misunderstood, and underappreciated [13, 27, 28, 30, 32, 38, 46, 47, 50, 51, 56]. Carers reported that despite their significant efforts, they rarely received appreciation or expressions of gratitude, and this led to reduced self-worth and a sense that their contributions to the care of the stroke survivor were insufficient [13, 50, 56]. As a result, carers identified the need to be understood and recognised for their role and efforts [27, 28, 30, 46, 47, 51, 57].

Another priority that was identified across a large number of studies (n = 28) was the need for time and space to relax and switch off from the caregiving role [7, 12, 27–32, 35, 38–47, 49–51, 53–57]. Carers frequently reported that they did not have time to relax and complete their own personal activities. Switching off involved carers finding time or moments to independently pursue activities of interest such as participating in social outings with friends or watching television.

Positive aspects of caring. Across nine studies, carers reported some of the positive aspects of caring and their satisfaction with their caregiving role [13, 26, 29, 38, 41, 43, 44, 52, 56]. Within these studies carers expressed a sense of accomplishment and a positive outlook on the value and impact of their caregiving role. Within five studies, carers identified that their role allowed them to make a meaningful contribution to the life of the stroke survivor [13, 26, 29, 44], and as a result, for some carers their role was viewed as a privilege [36, 44]. Some additional positive aspects of caring that were discussed included an increased appreciation for life and mastering new skills and knowledge [38, 41, 44, 50, 56].

Coping strategies. Within 23 studies, carers discussed strategies they used to cope with their caregiving role. These strategies involved faith, spirituality, and religion (n = 7) [10, 26, 27, 37, 40, 46, 50], use of humour (n = 5) [7, 12, 30, 48, 56], and positive thinking (n = 11) [7, 26, 30, 31, 35, 37–39, 43, 44, 56]. Carers identified that their faith in God, use of prayer, and strong spiritual life provided them with patience, hope and resilience to cope with uncertainties and their caregiving role [10, 26, 27, 37, 40, 50]. In addition, humour was used as a strategy to assist carers to cope with challenging situations [7, 12, 30, 48, 56]. Maintaining optimism and hope was reported as another strategy to assist carers to cope with their caregiving role [7, 31, 37, 39, 44, 56]. Carers often tried to maintain a positive outlook of their future and the stroke survivors’ recovery.

In summary, it was evident that the sudden and expected nature of stroke often required life adjustment for carers which subsequently led to changes in their roles and identity. Due to the changes in roles and identity, carers often reported prioritising their caring role which led to their engagement in more purposeful activities as opposed to meaningful. Overall, the changes to life, roles, identity, and subsequently valued activities had a significant impact on the health and wellbeing of carers. However, it was evident that carers discussed strategies and their needs which contribute to their health and wellbeing.