“Caregiving is a full-time job” impacting stroke caregivers' health and well-being: A qualitative meta-synthesis

2.1 Research design

This review adopted a qualitative meta-synthesis approach. (Stergiou-Kita et al., 2014; Thomas & Harden, 2008; Walsh & Downe, 2005; Zimmer, 2006). Qualitative meta-syntheses include the following: (a) identifying a relevant research question, (b) setting inclusion and exclusion criteria, (c) identifying and retrieving studies, (d) assessing quality of studies, and (e) synthesising findings across studies (Gewurtz et al., 2008).

2.2 Participants

Studies whose participants were caregivers of people with stroke and articles published in English-language peer-reviewed journals were included. Studies were excluded if: (a) no qualitative data were presented, (b) caregiver data were not separated from stroke survivor data, and (c) caregiver health and well-being were not examined. For the purposes of this review, the definition of health, adapted from the World Health Organization, encompassed an individual's physical, mental and social well-being (Constitution of the World Health Organization, 2006).

2.3 Search strategy and retrieval of studies

The literature search was carried out by five reviewers and an Information Specialist. Research papers were identified through a search of four electronic databases, Cumulative Index to Nursing and Allied Health Literature (CIHNAL), Medline, PsychINFO and Cochrane Library Database, covering all publications up to November 30, 2018. The researchers mapped terms to existing subject headings in each database and used keyword searching with and without truncation. Search terms included: ‘caregiver’, ‘carer’, ‘spouse’, ‘cerebrovascular accident’ and ‘stroke’, which have been used by previous reviews (Greenwood et al., 2009; Salter et al., 2008).

Reference lists from identified papers and review articles were hand-searched to supplement the electronic search. Once the initial articles were identified, the titles and abstracts of a random selection of 25 articles were reviewed by three authors (KMK, FKTL and JRS) to determine interrater reliability (K = 0.93). The three authors reviewed the remaining titles and abstracts using the established criteria and uncertainty was discussed until consensus was achieved. All three authors have experience conducting qualitative research and have completed graduate-level coursework on qualitative methods.

2.4 Quality rating

The included qualitative articles were assessed for quality using the Critical Appraisal Skills Programme (CASP). The CASP consists of 10 questions relating to the appropriateness of the study methodology, sampling strategy, clarity of data collection, analysis and procedures, consideration of bias and ethical issues, as well as accessibility and significance of the findings. The results of the CASP assessment can be found in Table 1 and is summarised and described below.

2.5 Data extraction and synthesis of findings

This study drew upon synthesis approaches described by previous qualitative meta-syntheses (Levack, Kayes, & Fadyl, 2010; Mudge, Kayes, & McPherson, 2015; Walsh & Downe, 2005). The procedure began by extracting general characteristics from each study. Data from the results section of the articles were imported into QSR NVivo 11, a computer software that assists researchers with the management and analysis of qualitative data (Levack et al., 2010; QSR International, 2005). Two reviewers (FKTL and JRS) coded a subset of articles to initiate codebook development. Through an iterative process, the codes were discussed and finalised to ensure consistency in coding. Thereafter, articles were coded line by line. Reciprocal translation methods were used to ensure that codes were applied consistently across articles by analysing subsequent studies in comparison with previously coded articles. Coded data were then grouped to develop descriptive themes with all authors. In order to go beyond the descriptive themes, all authors described the experiences of caregivers, first independently and then as a group until new themes encompassing the initial descriptive themes, the inferred caregiving situations and its implications on health and well-being were developed.

3.1 Caregiving is a full-time job

The analysis resulted in one overarching theme: ‘caregiving is a full-time job’. This overarching theme presented consistently across studies, as evidenced by the use of descriptors, such as “caring was relentless”, (Smith et al., 2004), “a full-time job” (Cao, 2010), being “on call”, (Saban & Hogan, 2012; Smith et al., 2004), ^“working a 24-hr day”, (Coombs, 2007), “24-hr duty” (Moore, Maiocco, Schmidt, Guo, & Estes, 2002) and having to be “accessible” to people with stroke (Bäckström & Sundin, 2009). As a result, the role of caregiving led to restructuring life, including altered relationships, and, ultimately, resulted in challenges to caregivers' physical and psychosocial health, described in the sub-themes below.

3.2 Restructuring life

Restructuring life was described through a variety of experiences reflecting caregivers' efforts to accommodate the care needs of the survivor, as well as manage multiple roles and responsibilities. These adjustments impacted various aspects of life, from everyday routines, participation in occupations, and personal time. Examples of these adjustments included changes to the physical household environment, (Silva-Smith, 2007), work schedules (Barbic, Mayo, White, & Bartlett, 2014; Silva-Smith, 2007) living arrangements, (Bastawrous, Gignac, Kapral, & Cameron, 22015; Coombs, 2007) and everyday routines (Silva-Smith, 2007).

There were many examples where the stroke event resulted in the caregiver taking on activities that had been the responsibility of the survivor (Buschenfeld & Morris &Lockwood, 22009; Buschenfeld et al., 2009; Cecil, Thompson, Parahoo, & McCaughan, 2013; Coombs, 2007; O'Connell & Baker, 2004; Silva-Smith, 2007). This typically happened as the caregiving role became more complex after the transition from acute care to the home (Chow & Tiwari, 2014). Caregivers commonly described “altered roles” (El Masry, Mullan, & Hackett, 2013; Smith et al., 2004) or “role reversals” (Bastawrous, Gignac, Kapral, & Cameron, 2014; Saban & Hogan, 2012; Thomas & Greenop, 2008) in which the caregiver had to carry out roles typically held by the person who experienced the stroke, including housework (Buschenfeld et al., 2009; Thompson et al., 2004; Winkler, Bedford, Northcott, & Hilari, 2014), driving (Bakas, Austin, Okonkwo, Lewis, & Chadwick, 2002; Cecil et al., 2013; Johnson, 1998), managing finances (Barbic et al., 2014; Cecil et al., 2013; Smith et al., 2004; Thompson et al., 2004) or child-rearing (Bäckström & Sundin, 2009; Silva-Smith, 2007; Thompson et al., 2004; Winkler et al., 2014).

In addition, caregivers reported changes to their abilities to participate in meaningful activities. Many described having to reduce involvement in leisure activities, such as exercising, (Bastawrous et al., 2015; Cao et al., 2010; Silva-Smith, 2007), playing sports (Barbic et al., 2014; Bastawrous et al., 2015; Silva-Smith, 2007) and travelling (Bäckström & Sundin, 2009; Barbic et al., 2014; Cao et al., 2010; Johnson, 1998; Silva-Smith, 2007). Others discussed limited interactions with family and friends, (Buschenfeld et al., 2009; El Masry et al., 2013; Green & King, 2009; Saban & Hogan, 2012; Chow & Tiwari, 2014), often leading to feelings of social isolation (Buschenfeld et al., 2009; Kitzmüller, Häggström, Asplund, & Gilje, 2012; Chow & Tiwari, 2014). Changes in employment were frequently cited, as participants reported having to reduce work hours or give up work entirely to fulfil their caregiver role (Bastawrous et al., 2015; Buschenfeld et al., 2009; Cecil et al., 2013; de Leon Arabit, 2008; Thomas & Greenop, 2008). One participant reported, “I have no uninterrupted time for personal things, including showers/baths, TV program or a movie, a chance to read or paint or play the organ. No chance to leave the house for a walk or to bike” (Saban & Hogan, 2012, p. 6).

3.3 Altered relationships

Across numerous studies, caregivers suggested that caregiving resulted in altered relationships with the survivor (Bastawrous et al., 2015) and within the family (Bäckström & Sundin, 2009; Thomas & Greenop, 2008). Due to changes in typical marriage (Smith et al., 2004; Winkler et al., 2014) and parent–child roles (Bastawrous et al., 2014), both spousal caregivers and adult child caregivers experienced a sense of relationship loss with the survivor (Bastawrous et al., 2014; Cao et al., 2010; Saban & Hogan, 2012).

Loss of the spousal relationship was most difficult (Coombs, 2007; Winkler et al., 2014) as spousal caregivers expressed a loss of the partner they knew pre-stroke (Bäckström & Sundin, 2009; Barbic et al., 2014; Cao et al., 2010; Coombs, 2007; Saban & Hogan, 2012). In these instances, caregivers reported decreased intimacy and described the survivor as a stranger, as portrayed here: “So the feelings are…there's nothing left… I don't want him to touch me, I don't want him to be around me…and then to go to bed every night with a man that you don't…want to be there…” (Bäckström & Sundin, 2009, p. 120).

Adult children caregivers also identified changes in their relationship with their parent because of the stroke, including a ‘role-reversal’ as they were now caring for those who once cared for them (Saban & Hogan, 2012). Adult daughter caregivers focused mostly on their pre-stroke relationship their parent, despite noted changes in personality and relationships, and felt a “moral duty” to care for those who cared for them (Bastawrous et al., 2014, p. 1532). Adult daughters found that personality changes made it difficult to “[get] along”, but due to good pre-stroke relationships, they wanted to remain engaged in activities that allowed them to maintain a positive, close relationship post-stroke (e.g., speaking often and spending time together) (Bastawrous et al., 2014). Changes in the parent–child relationship contributed to feelings of sadness, loss and frustration (Bastawrous et al., 2014). For instance, many daughters experienced difficulty in the provision of intimate care (e.g., toileting and bathing) (Bastawrous et al., 2014).

Despite these negative consequences, the data also highlighted positive changes in relationships, including: improving communication (Green & King, 2009), increased sense of closeness with the survivor (Barbic et al., 2014; El Mastry et al., 2013; Saban & Hogan, 2012; Winkler et al., 2014), greater appreciation of the spousal relationship (Green & King, 2009), closer family relationships (Bäckström & Sundin, 2009; Barbic et al., 2014; El Masry et al., 2013; Green & King, 2009; Thomas & Greenop, 2008) and better meaning in friendships (Bäckström & Sundin, 2009).

3.4 Physical well-being

Caregiving as a full-time job was also evident in descriptions of the physical demands of care. Participants across studies described caregiving as a 24-hr routine of performing strenuous physical tasks for the stroke survivor. Some caregivers reported that survivors needed constant assistance with toileting and eating (Greenwood, Mackenzie, Cloud, & Wilson, 2010). Other demands included: bathing, dressing, delivering oral medication and putting the survivor to bed (Bäckström & Sundin, 2009; de Leon Arabit, 2008; Chow & Tiwari, 2014; Winker et al., 2014).

Due to these demands, many caregivers experienced their own physical health challenges. Physical consequences related to fatigue (e.g., physical tiredness) (Bäckström & Sundin, 2009; Barbic et al., 2014; Cao et al., 2010; Greenwood et al., 2010; Kitzmüller et al., 2012; de Leon Arabit, 2008; O'Connel & Baker, 2004; Pierce, Thomas, Govoni, & Steiner, 2012; Thompson et al., 2004; Chow & Tiwari, 2014) and difficulties sleeping at night (Barbic et al., 2014; Lee & Mok, 2011; de Leon Arabit, 2008; Moore et al., 2002; Pierce et al., 2012) were most commonly reported. Some caregivers described having to get up to provide care (Bulley, Sheils, Wilkie, & Salisbury, 2010; Saban & Hogan, 2012; Smith et al., 2004; Winkler et al., 2014) and others reported being worried and checked on the survivor throughout the night (Green & King, 2009; Kitzmüller et al., 2012; Smith et al., 2004).

3.5 Psychosocial well-being

The caregiving situation affected many aspects of caregivers' psychosocial well-being. The aspects that comprise caregivers' psychosocial well-being included mental health (e.g., depression), emotional health (e.g., feelings, beliefs, attitudes) and social life (e.g., relationships).

Many caregivers reported a sense of responsibility or obligation to care, wherein the survivor was a spouse (Cecil et al., 2013; Gustafsson & Bootle, 2013; Johnson, 1998; Lee & Mok, 2011; de Leon Arabit, 2008), a parent (Bastawrous et al., 2014; Bocchi & Angelo, 2008; Danzl et al., 2013; Johnson, 1998; Subgranon & Lund, 2000) or a family member (Bäckström & Sundin, 2009; Pierce, 2001). Key aspects of the caregiving situation contributed to the psychosocial impact including caregivers' role motivating and encouraging people with stroke to promote further recovery (Gustafsson & Bootle, 2013), and managing the survivors' own emotional hardships, including suicidal ideation (Chow & Tiwari, 2014). In restructuring their lives, spousal caregivers reported a loss of independence (Cao et al., 2010; Green & King, 2009), autonomy (Green & King, 2009) and self-identity (Pierce et al., 2012). The full-time nature of this role led caregivers to feel burnt out, (Cao et al., 2010; Winkler et al., 2014), anxious (Barbic et al., 2014; de Leon Arabit, 2008; Thomas & Greenop, 2008; Chow & Tiwari, 2014; Winkler et al., 2014), depressed (Barbic et al., 2014; Bulley et al., 2010; Ghazzawi, Kuziemsky, & O'Sullivan, 2016; Thomas & Greenop, 2008; Chow & Tiwari, 2014) and frustrated (Bastawrous et al., 2014; de Leon Arabit, 2008; Winkler et al., 2014). Due to changes in relationships, many caregivers expressed loneliness (Saban & Hogan, 2012; Thomas & Greenop, 2008; Chow & Tiwari, 2014) or social isolation (Chow & Tiwari, 2014). A sense of fear for the survivor was commonly reported (Kitzmüller et al., 2012), particularly a fear of another stroke (Bocchi & Angelo, 2008; Coombs, 2007; Smith et al., 2004) and fear related to safety when leaving the person with stroke home alone (Gosman-Hedström & Dahlin-Ivanoff, 2012; Green & King, 2009; Low, Roderick, & Payne, 2004). This fear and need to monitor the survivor further exacerbated the psychosocial challenges experienced by increasing levels of stress (Green & King, 2009; Thomas & Greenop, 2008).

3.6 Factors affecting physical and psychosocial well-being

A variety of factors affected caregiver health and psychosocial well-being, including caregiver characteristics, availability of support and severity of stroke survivor impairments. For example, caregivers who were older and had pre-existing health problems generally found caregiving more physically challenging (El Masry et al., 2013). Others described the inability to turn or lift the survivor due to limited physical strength (Bocchi & Angelo, 2008; Lee & Mok, 2011). In contrast, individuals with personality characteristics, such as patience and empathy (El Masry et al., 2013; Moore et al., 2002; Rodrigues et al., 2013), as well as those who maintained a positive outlook (Winkler et al., 2014), transitioned more easily into the demands of the caregiver role. Personal coping mechanisms, such as drawing on past experiences (Buschenfeld et al., 2009; Winkler et al., 2014) and religion (Bocchi & Angelo, 2008; Cecil et al., 2013; Coombs, 2007; Danzl et al., 2013; de Leon Arabit, 2008; Pierce, 2001; Thompson et al., 2004) also made challenges more manageable.

Another aspect impacting caregivers' psychosocial experiences was the support available. Caregivers emphasised the importance of information and education (Cecil et al., 2013; El Masry et al., 2013; Saban & Hogan, 2012), training with physical care demands (Cobley, Fisher, Chouliara, Kerr, & Walker, 2013; Rodrgiues et al., 2013), and emotional and social support (Barbic et al., 2014) from clinicians to improve their health and well-being. Caregivers receiving relief from informal (e.g., family members and friends) support highlighted the value of assistance with performing housework (Low et al., 2004; Smith et al., 2004; Winkler et al., 2014), caring for the survivor (Coombs, 2007; Moore et al., 2002; Winkler et al., 2014) and offering psychosocial support (Van Dongen, Josephsson, & Ekstam, 2014; Low et al., 2004; Thomas & Greenop, 2008; Winkler et al., 2014). In contrast, caregivers lacking support were unable to take respite, and felt overwhelmed (Bastawrous et al., 2015) and isolated (Greenwood et al., 2010).

The demands of the caregiving situation were also dependent on survivor characteristics. More severe impairments were associated with greater experiences of caregiver burden and distress (Cao et al., 2010). Particularly, caregivers experienced challenges with survivor impairments in communication (Bakas et al., 2002; Bastawrous et al., 2014; Winkler et al., 2014), mobility (El Masry et al., 2013), and cognition and behaviour (El Masry et al., 2013; Gosman-Hedström & Dahlin-Ivanoff, 2012; de Leon Arabit, 2008; Smith et al., 2004).

3.7 Strategies to improve caregiver health and psychosocial well-being

Caregivers discussed strategies to enhance their physical health and psychosocial well-being. For instance, caregivers believed that more personal attention could improve health and well-being outcomes, as they recounted feelings of neglect by clinicians due to their exclusive focus on survivors (Bäckström & Sundin, 2009; Bakas et al., 2002), and described feeling the same sense of neglect from their friends and family (Saban & Hogan, 2012). Within their reflections, caregivers also suggested the need for respite to periodically escape from the relentless demands of the caregiver role (Bäckström & Sundin, 2009; Barbic et al., 2014; Cao et al., 2010; Lee & Mok, 2011). This short-term relief was recognised as a necessary component in alleviating stress (Cao et al., 2010) and maintaining caregiver resilience (Bäckström & Sundin, 2009) and well-being (O'Connell & Baker, 2004).

Despite the value of social support services (e.g., respite, peer support), caregivers reported barriers to access. Common barriers included lack of awareness of available services (Danzl et al., 2013; Saban & Hogan, 2012), unwillingness to seek support (Bakas et al., 2002; Bocchi & Angelo, 2008; Gosman-Hedström & Dahlin-Ivanoff, 2012) health insurance or financial restrictions, (Moore et al., 2002; Winkler et al., 2014) and geographic location (i.e., services or resources not available in their area) (Cecil et al., 2013; Danzl et al., 2013; de Leon Arabit, 2008; Low et al., 2004).

Caregivers called for a re-examination of current services to meet the challenges experienced by diverse caregiving populations, for example, those of young spousal caregivers (El Masry et al., 2013). Interventions providing psychological and financial support, as well as training in post-stroke care can also elevate some of the burden caregivers face (Pesantes, Brandt, Ipince, Miranda, & Diez-Canseco, 2017).

4.1 Limitations

The review had some limitations. Although articles with varying origins and participant characteristics provided insight into a variety of caregiver experiences, the review only included articles published in English. As a result, findings may not represent the cultural diversity of caregiving experiences. Furthermore, as this study included only published, peer-reviewed studies, relevant research in grey literature may not have been identified. Additionally, the role of quality assessments of qualitative studies remains contested (Carroll & Booth, 2015;), thus the use of the CASP may not be appropriate to evaluate qualitative studies that differ in epistemological and philosophical paradigms (Barbour, 2001). It is possible that the varying theoretical unpinning used in each of the qualitative studies may have influenced the types of qualitative questions asked in the studies and the findings of this qualitative body of literature. While, the role of quality assessments of qualitative studies remains controversial (Carroll & Booth, 2015; Tong et al., 2012), all of the qualitative studies included in our review employed an appropriate methodology and research approach to meet their study aims. Further qualitative studies examining caregivers' health and well-being are encouraged to be more explicit in their reporting of recruitment methods and the relationship between the researcher and participants.