The positive aspects of caregiving for cancer patients: a critical review of the literature and...

Review

The positive aspects of caregiving for cancer patients:a critical review of the literature and directions forfuture research†

Qiuping Li1,2 and Alice Yuen Loke1*1School of Nursing, The Hong Kong Polytechnic University, Hung Hom, Kowloon, Hong Kong, China2Wuxi Medical School, Jiangnan University, Wuxi, Jiangsu, China

*Correspondence to:School of Nursing, The Hong KongPolytechnic University, Hung Hom,Kowloon, Hong Kong, China.E-mail: [email protected]

†This article was published onlineon 28 May 2013. Errors weresubsequently identified. This noticeis included in the online version toindicate that it has been corrected[16 September 2013].

Received: 8 October 2012Revised: 6 March 2013Accepted: 24 April 2013

AbstractObjective: Although there is a vast body of studies exploring the negative aspects of spousal caregivingfor cancer patients, there have also been reports on the positive aspects. The objective of this reviewwas to summarize and appraise the positive aspects of spousal caregiving and to identify directionsfor future research.

Methods: A systematic search was conducted to identity articles published in English or Chinesefrom January 1996 to July 2012. Studies were located using an electronic search, a manual search,and an author search.

Results: A total of 35 articles were identified and included in this review. The focus of these studiesand their results were described on the basis of the Conceptual Framework of the Positive Aspects ofCaregiving. The findings revealed that spousal caregivers for cancer patients experienced variouspositive aspects of caregiving, such as an enhanced relationship with the care-receiver, the feeling ofbeing rewarded, a sense of personal growth, and a perception of personal satisfaction. Daily enrich-ment events and self-efficacy on the part of the caregivers were identified as the determining factorsin the positive aspects of caregiving.

Conclusions: All of the three domains of the positive aspects of caregiving are interdependent andworked together to contribute to the positive outcomes experienced by spousal caregivers. An inter-vention program specially designed to enhance the positive aspects of caregiving will support spousescaring for cancer patients.Copyright © 2013 John Wiley & Sons, Ltd.

Introduction

The diagnosis of cancer and its treatment can be devastatingfor both patients and their family caregivers, particularly thespouse, who is usually the primary caregiver [1–4]. A vastbody of research has revealed the negative aspects of spousalcaregiving for cancer patients, such as high rates of psycho-logical distress, depressive symptoms, anxiety, a feeling ofburden, potential burnout, poor health, and unmet socialneeds [5–11].Although most of the studies in this area have focused

on the negative experiences of caregiving, several studieshave discussed on the positive aspects of the caregivingexperience. Caregivers have reported that the experienceof caregiving made them feel good about themselves inthat they were needed, caregiving added meaning to theirlives, enabled them to learn new skills, and strengthenedtheir relationship with the care-receiver and with othermembers of the family [12]. It has been reported that the5-year mortality rate is lower among the spousal caregiverwho provided emotional support to their cancer patientsthan among those who did not [13].

A study that aimed to explore the benefits found bythose caring for cancer patients identified these asincluding acceptance, empathy, appreciation, familycloseness, a positive self-view, and a reprioritization ofvalues [14]. These benefits found from caregiving wereuniquely associated with life satisfaction and depression.Coming to accept what was happening and re-establishingrelationships with others are related to greater life satisfac-tion. Becoming more empathetic toward others andreprioritizing values are related to a lessening of the symp-toms of depression [14]. However, the positive experienceof spousal caregiving for cancer patients has been rela-tively unexplored [14,15].The lack of acknowledgment of the positive aspects

of caregiving seriously skews perceptions of the care-giving experience and limits the ability to acquire a fullunderstanding of caregiving. This creates a barrierto enhancing caregiver adaptation and to developinginterventions for caregivers who need help [16]. It isargued that a more holistic view of caregiving needsto be taken by considering its positive aspects or bene-fits [17–19].

Copyright © 2013 John Wiley & Sons, Ltd.

Psycho-OncologyPsycho-Oncology 22: 2399–2407 (2013)Published online 28 May 2013 in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.3311

Although there are a handful of reports on the positiveaspects of caring for cancer patients [14,15,18], noreviews of the literature focusing specifically on thepositive aspects of spousal caregiving for cancer patientswere found. A review and synthesis of such studies areneeded to gain more insights and a full picture of thepositive aspects of caregiving and to identify its deter-mining factors [16,20]. This better understanding canhelp professionals to enhance the adaptation and well-being of family caregivers, and to develop interventionsto support the positive aspects and improve the qualityof caregiving [16,20].In this review, the positive aspects of caregiving

were defined broadly as ‘the extent to which the care-giving role is appraised to enhance an individuals’ lifespace and be enriching’ [16] (p. 219). This definitionrefers to the positive affective or practical returns thatare experienced as a direct result of becoming a care-giver for cancer patients, including post-traumaticgrowth, benefit finding, optimism, positive effects,hope, and meaning in life [21,22]. Although theseleading positive constructs were initially used in stud-ies on cancer patients [21,22], they have also beenbroadly adopted in studies on the caregiving experi-ences of family members caring for cancer patients[14,23–25].The aims of this literature review are twofold: (i) to ex-

plore the positive aspects of caregiving for cancer patientsand to analyze the contributing factors and (ii) to identifydirections for future research.

Methods

The process of searching and selecting

A systematic search was conducted to identify literature onthe positive aspects of the experience of spouses caring forcancer patients. The search included studies published inEnglish and Chinese from January 1996 to July 2012.Studies were located using several strategies, starting withelectronic searches. The following computerized databaseswere searched: MEDLINE, CLINAHL, Science CitationIndex Expanded, Scopus, PsychINFO, and the ChinaAcademic Journals Full-text Database. The key searchterms used were ‘cancer’ or ‘oncology’ or ‘carcinoma’,and ‘caregiver’ or ‘caregiving’ or ‘carer’, and ‘optimism’or ‘positive affect’ or ‘benefit finding’ or ‘hope’ or ‘lifemeaning’ or ‘post-traumatic growth’. In addition toelectronic searches, the reference lists of identified studieswere also manually searched for further relevant studies,and the publications of the leading author in this field weresearched for relevant publications. Articles were selectedaccording to the inclusion and exclusion criteria. The flowdiagram of the search and selection process is outlinedin Figure 1.

Criteria for inclusion and exclusion

The studies included in this review met the followingcriteria: a focus on the positive aspects of spouses caringfor cancer patients. Given that only nine articles focusedsolely on spousal caregivers, studies that targeted familycaregivers, with spousal caregivers comprising more thanhalf of the study population, were included. Commentar-ies, editorials, literature reviews, interventions or pro-grams, and conference proceedings were not included inthis review. Data and literature were extracted from eachof the included studies using a standard format: informa-tion on the literature, study method, study aims, samples/settings, and findings.

Conceptual framework on the positive aspectsof caregiving

For a better and clearer understanding of the processesrelated to the development of positive aspects of caregivingin the caregivers’ experience, the conceptual framework ofthe Positive Aspects of Caregiving (CFPAC) proposed byCarbonneau and colleagues in 2010 [20] was adopted toguide this review. The CFPAC contains three main domains.The components of the positive aspects of caregiving include‘the quality of the daily relationship of the caregiver/care-receiver’, ‘a feeling of accomplishment’, and ‘themean-ing of the role in daily life’. The determining factors of thepositive aspects of caregiving include ‘daily enrichmentevents’ and ‘caregiver’s sense of self-efficacy’. The positiveoutcomes include ‘caregiver well-being’ and ‘involvementcontinuity’ [20]. It was emphasized that ‘the various compo-nents of the conceptual framework are interdependent andwork together to reinforce the caregiver’s well-being andsupport their involvement’ [20] (p. 330).To our knowledge, there is no conceptual framework on

the positive aspects of caregiving developed specificallyfor family or spousal caregivers of cancer. Although theCFPAC was proposed for family caregivers of dementia, itwas developed on the basis of various studies, including can-cer studies, on the positive aspects of family caregiving [20].The CFPAC was therefore adopted to guide this review.

Results

A total of 18 quantitative studies, 15 qualitative studies, and2 mixed method studies were included in this review. Onthe basis of the CFPAC [20], the findings of these studieswere grouped under the following three domains: thepositive aspects of caregiving, the determining factors ofthe positive aspects of caregiving, and positive outcomes.

Positive aspects of caregiving

The domain of the ‘positive aspects of caregiving’ includesthe three components proposed in CFPAC.

2400 Q. Li and A. Y. Loke

Copyright © 2013 John Wiley & Sons, Ltd. Psycho-Oncology 22: 2399–2407 (2013)DOI: 10.1002/pon

http://www.lib.polyu.edu.hk/databases/sci

http://www.lib.polyu.edu.hk/databases/sci

Quality of the daily relationshipof the caregiver/care-receiver

The quality of the daily relationship of the caregiver/care-receiver was proposed as a central component ofthe positive aspects of caregiving [20]. Caregiversreported that their relationship with the care-receiverand the whole family improved because of the caregivingprocess and that the improvement in the relationship wasreciprocal between the caregiver and care-receiver.A mixed method study of 45 bereaved family caregivers,

using a self-developed questionnaire and structured inter-views, reported that some caregivers described their timesof intimacy during the caring process in ways such as ‘. . .we fell more in love as the time got shorter and she becamesicker’ [26] (p. 699). Over half of the caregivers (53%) em-phasized that it is important to communicate openly with thepatient [26]. Another mixed method study, using focusgroups and a questionnaire survey, also revealed that thecaregivers experienced a sense of closeness to the patientand to the entire family during the caregiving process. Asone of the caregivers stated, ‘we’ve definitely grown closerbecause of the time we’ve spent together’ [27] (p. 252).From interviews of family caregivers, it was also

reported that during the caring process, the caregivers ex-perienced a sense of closeness with the care-receiver and

with other members of the family. The caregivers experi-enced stronger feelings of love and being closer together,resulting in an enhanced and deeper relationship with thecare-receiver [28–30] and in improved family relation-ships [31,32]. A study on couples coping with lung cancershowed that the couples experienced an increase in non-coital physical closeness and greater appreciation of theirspouse [33]. Some spousal caregivers described havingexperienced improved communication and more apprecia-tion for each other because of greater awareness of thelimited time that they may have.The positive aspect of an enhanced relationship between

the caregiver and the care-receiver, and other members oftheir family was also reported in quantitative studies. Astudy using the Positive Aspects of Caregiving Scale thatevaluated the positive aspects of male spousal caregiverswho cared for their wives with breast cancer showed thathusbands perceived their caregiving as a way to show theirlove, which brought them closer to their partners [34]. Byusing a self-developed questionnaire, another study thatassessed the supportive care needs and positive outcomesof spousal caregivers of cancer patients showed that over74.3% of the couples appreciated their relationships withothers more and 56.1% reported that they had benefited

Figure 1. The flow diagram on identifying the literature

2401The positive aspects of caregiving for cancer patients


(e.g., through emotional support) from contact with othercancer survivors and their family members [35].A study conducted in Japan explored the experience of

primary caregivers caring for a terminal cancer patient athome. The findings showed that most of the primary care-givers (90%) reported a deepening of their bond with thecare-receiver and other family members [36]. Anotherstudy also conducted in Japan developed the CaregivingConsequences Inventory (CCI) to explore perceptions ofthe consequences of a bereaved family member caringfor cancer patients. The results showed that the domainof ‘appreciation for others’ was one of the positive conse-quences of caregiving [37]. Caregivers expressed grati-tude for the relationships and compassion that theydeveloped, with comments such as, ‘I came to have moreappreciation for others’, ‘I became more aware of lovefrom other people’, and ‘I came to place greater value onrelationships’ [37].Interviews of caregivers of cancer patients showed that

the patient’s optimism had an impact on the caregiver’soptimism, coping, and well-being [38]. Caregivers feltthat what they were doing was important to their lovedones and that caregiving was a way of showing love totheir relatives [39].Four studies focused on examining the growth of both

caregivers and care-receivers since the diagnosis of can-cer, using a Post-Traumatic Growth Inventory (PTGI)[25,40–42]. There were three studies that explored the as-sociation of PTG among couples coping with cancer[25,40,41]. For example, one study using a bivariate anal-ysis indicated that the PTG of husbands was positively as-sociated with the PTG of their wives with breast cancer(r= 0.20, p= 0.04, n= 69) [25]. The other two studiesreported a moderate degree of PTG associated with thecancer experience between spousal caregivers and care-receivers [40,41]. One study that examined the correlationof PTG between family caregivers and care-receivers alsofound a significant correlation between the ratings of pa-tients and caregivers on the PTGI subscales of spirituality(r= 0.38, p< 0.02) and personal strength (r= 0.44,p< 0.004) [42].It is concluded that there is improvement and reciproc-

ity in the relationship between caregiver and care-receiver.

Feeling of accomplishment

Two mixed method studies showed that caregivers feel asense of accomplishment from the knowledge that theircare made the patient feel more comfortable, the realiza-tion of their own capabilities, and a perception of personalsatisfaction [26], and from feeling respect and apprecia-tion from their care-receiver [27].Findings from qualitative studies also supported the view

that a feeling of accomplishment arises from the experiencefor cancer patients. A study on bereaved family caregivers

of patients with advanced cancer reported that caregivershad a perception of accomplishment, such as a sense ofpersonal growth, no feelings of guilt, and were able toexpress their grief more openly and freely as a result of hav-ing provided care for the patient [31]. Another study foundthat Indian women who cared for relatives suffering fromcancer reported that caregiving was a time when theirrelationship was tested and that caregiving helped them todiscover their hidden potential for patience, the strength tohandle novel and difficult situations, and the ability to dealwith multiple demands. It also helped them to learn to toler-ate irritations/hassles [38]. Another study reported that thecaregivers stated that caregiving had given them a sense ofaccomplishment when they saw their patients improve andfelt themselves to have become stronger [30].Other qualitative studies reported various feelings of

accomplishment, such as the discovery of personal strengthand the knowledge that one is needed [43], and a sense ofreward for doing something good [29]. Being present atthe time of death was positioned as rewarding because itfacilitated the process of saying goodbye, fostered theinclusion of others, provided closure, and was a spiritualexperience [29].A feeling of accomplishment was also reported in

quantitative studies, arising from a sense of personal growth[34,35], a sense that one has done one’s best [36], and afeeling of reward [44]. A study conducted among husbandsthat evaluated positive aspects of their caring for wivesundergoing active treatment for breast cancer revealed thatthe husbands, on average, appraised their caregiving as anexperience that produced both intrapersonal and interper-sonal growth [34]. Another study also reported that a largeproportion (70.9%) of spousal caregivers felt that they hadgrown as a person through the caregiving process [35].In summary, various manifestations of a feeling of ac-

complishment were reported among family caregivers,such as feeling rewarded, discovering personal growth,perceiving personal satisfaction, feeling needed, and re-ceiving respect and appreciation from their care-receivers.

Meaning of the role in daily life

The ‘meaning of the caregiver’s role in daily life’ forms thecornerstone of the CFPAC [20]. Studies that focused on themeaning of the caregiver’s role in daily life addressed theaspects of keeping the life of patients and the family as nor-mal as possible, changing values, and reprioritizing.It was encouraging to caregivers of cancer patients when

the everyday life of the patient and the family could bemaintained as much as possible [29,45]. In a mixed methodstudy, bereaved family caregivers (n=45) stated that havingcontrol within their own home was one of the positiveaspects of caring for the patient at home [26]. Interviewswith caregivers of patients who had received an initialdiagnosis of colorectal cancer found that caregivers thought



that keeping the family’s and children’s routines as normalas possible was an important positive experience for them.To do this, they put on a brave face while silently worryingabout the effects of the illness on the children, struggling toknow the right thing to do, and dealingwith extended family[46]. Several other qualitative studies found that caregivingwas an opportunity for caregivers to experience a shift inperspective in terms of being more accepting of each day,being able to prioritize their life issues, and also findingmeaning in their role through acknowledging the negativeaspects of their experience [38,39,43,47]. Overall, caregiversof cancer patients reported that no matter how difficultcaregiving was, as long as they could keep the everyday lifeof the patient and the family as normal as possible, theywould have a positive perception of the experience.Studies using the CCI showed that realizing meaning in

life and reprioritizing one’s values in life are recognized asthe two positive domains of family caregiving for cancerpatients [37,48]. The meaning in life domain in the CCIincluded the following items: ‘I came to find purpose andmeaning in life’, ‘I have a better outlook on life’, and ‘Icame to realize that there is meaning in life no matter whathappens’. The reprioritization domain in the CCI consistedof following items: ‘I came to understand the brevity of lifeand to appreciate each day’, ‘I came to notice what is reallyimportant in my life’, and ‘I have learned the importance ofbeing alive’ [37]. A change in life priorities (m=4.09) wasrated as one of the highly positive elements among familycaregivers of cancer patients [49].

Determining factors of positive aspects of caregiving

The two determining factors of a positive caregiving expe-rience of the CFPAC, ‘daily enrichment events’ and ‘care-givers’ sense of self-efficacy’, are discussed in theparagraphs that follow [20]. Other factors related to posi-tive aspects of caregiving identified in the process of thisreview, hope, social support, religious coping, personalcharacteristics, and health care support, are grouped underthe name of ‘contextual factors’ and discussed in theparagraphs that follow.

Daily enrichment events

It was reported that daily enrichment events reinforce thepositive aspects of caregiving [20]. This included takingtime out for oneself, such as to go for a walk, to rest, orjust to grieve privately away from the patient [26,27].A study exploring the sources of strength and positive

experiences of Indian women in the process of caregivingdescribed several daily enrichment events [38]. The eventswere the following: (i) related to the improved health ofcare-receivers, such as getting a normal report of a bloodinvestigation; (ii) interactions with significant others, forexample, talking to a friend who listened to their difficultiesand provided emotional support; (iii) having a temporary

respite from caregiving and opportunities to engage inpositive distractions, for example, being able to take a fewhours off from the caregiving role through soliciting others’help and engaging in pleasurable activities (such as garden-ing) engaged in before the care-receiver was diagnosed withcancer; and (iv) the recollection of positive events of the pastor positive aspects of one’s current life situation, and plan-ning for future, for example, talking about good times inthe past and visualizing good things in the future [38].Overall, various enrichment events in daily life may helpcaregivers to experience positive aspects of caregiving,which can result in positive outcomes.

Caregiver’s sense of self-efficacy

A caregiver’s sense of self-efficacy is another determiningfactor of positive aspects of caregiving. A study examinedthe relationship between caregiver self-efficacy in manag-ing the pain of advanced cancer patients and caregiver ad-justment by using the caregiver version of the ChronicPain Self-Efficacy Scale [50]. The findings showed thatover half (57%) of the caregivers rated their self-efficacyin pain management as moderate (between 30 and 75 ona 0–100 scale). There were negative associations betweencaregiver self-efficacy in pain management and caregiverstrain (the caregiver strain index, r=�0.36, p< 0. 01),and caregiver negative mood (the Profile of MoodStates-B, r=�0.31, p< 0.05). By contrast, there was apositive association between caregiver self-efficacy inpain management and caregiver positive mood (Profileof Mood States-B, r= 0.41, p< 0.01). Thus, caregiverswho gave a high rating to their self-efficacy in managingthe pain of their cancer patient were much more likely toreport lower levels of caregiver strain and negative mood,and higher levels of positive mood [50].

Contextual factors

Hope in the caregiving experience was explored in fourstudies [23,24,45,51]. A study that showed that caregiversof cancer patients had various hopes during their caregivingprocess, such as the hope of a miracle cure or of a spontane-ous remission of the disease, the hope of effective pain andsymptom control, and the hope of being well cared for andsupported by health professionals, friends, and the commu-nity [23]. Caregivers also believed that there were ways offostering coping and nurturing hope when discussing apatient’s prognosis and end of life issues with health profes-sionals. It was also pointed out that ‘hoping for the bestwhile preparing for the worst’ is one of the strategies forcoping in clinical practice [23]. Another study on the care-givers of cancer patients also reported that facing tomorrowand believing in the patient’s capacity to survive was one ofthe subthemes of hope [51].Interviews from a qualitative study showed that through

hope, caregivers projected meaningfulness into the future



and there was something potentially meaningful to lookforward to [45]. This was in line with the findings of an-other study that explored the hope experience of the be-reaved female spousal caregivers of cancer patients. Theresults showed that hope is a gradual process of regaininginner strength and building self-confidence to make senseof their situations [24]. Through hope, the caregiverslearned to stay positive and move ahead with their lives[24]. In brief, hope is not only one of the factors allowingthe caregivers of cancer patients to maintain a positiveoutlook but also a factor that can be nurtured.A relationship between social support and religious

coping with positive aspects of caregiving was reportedin several studies. A study reported that caregivers witha religious affiliation and caregivers who perceived greaterfamily support were more likely to experience caregiverpositivity [48]. Another study also reported that socialsupport and religious coping were related to greater posi-tive affect (r= 0.10 and 0.13, respectively, p< 0.01) [52].Another study showed that caregivers who reported fre-

quently using positive methods of religious coping reportedderiving more satisfaction than those who did not [53]. Inaddition, the greater use of negative religious coping was as-sociated with a poorer quality of life (SF-36, b=�0.16) andlower satisfaction (b=�0.16). It was concluded that nega-tive religious coping was indirectly associated with caregiv-ing outcomes through a reduction in the caregivers’perceived social support, optimism, and self-efficacy [53].Personal characteristics, such as the caregivers’ esteem

[54], gender, and motives [55] were also found to relateto the caregivers’ well-being. A study showed that care-givers with higher esteem reported lower psychologicaldistress (B=�0.12; SE= 0.05), better mental functioning(B= 0.33; SE= 0.13), and better spiritual adjustment(B= 0.48; SE= 0.10) [54]. Another study that examinedpredictions of the well-being of spousal caregivers as de-termined from their motives showed that male spousalcaregivers scored higher on external caregiving motivesthan females, whereas women reported finding more ben-efits from the caregiving process than men [55]. Amongmen, autonomous motives were related to less depression,and introjected motives were related to less life satisfac-tion and more depression. Among women, autonomousmotives were related to the finding of greater benefits [55].With respect to health care support, four studies focused

on the family caregivers of cancer patients who had died athome [26,30,36,44]. Support from health professionals,such as informational and emotional support, was recog-nized as one of the essential elements in benefitting indi-viduals involved in the caregiving process. A studyshowed that 90% of the caregivers (n = 112) reported thatthey had done their best in terms of providing caregivingat home, in that the patients had been able to live at homeuntil the end of their life, with assistance from a palliativecare service [36].

Positive outcomes

The conceptual framework speculates that the positive as-pects of caregiving and enhancing factors contributing to apositive experience will contribute to caregiver well-beingand continuity in involvement. None of the studies in-cluded in this review examine this domain of the CFPAC.A study that summarized the domains of benefit finding

and outcomes in caregiving among close family membersof cancer survivors showed that the variables of religiouscoping (m= 2.85, p< 0.001) and social support(m= 3.15, p< 0.001) were significantly correlated to thedomains of benefit finding. All six domains of the benefitfinding score as well as the overall benefit finding scorewere uniquely associated with psychosocial variables (lifesatisfaction and depression, p< 0.001) [14]. Anotherstudy reported that the ability to find meaning and peaceduring the cancer experience may be an important partof the overall well-being of the spousal caregivers of can-cer patients [56].

Discussion

In this review, positive aspects of family caregiving for can-cer patients were explored by adopting the CFPAC [20].The domain of ‘positive aspects of caregiving’ reported

in this review included the component of the quality of thedaily relationship of the caregiver/care-receiver – that is, apositive relationship with the care-receiver and the family,and reciprocity between caregiver and care-receiver. Thecomponent of ‘a feeling of accomplishment’ includedfeeling rewarded, discovering personal growth, perceivingpersonal satisfaction, and being needed, respected, and ap-preciated by the care-receiver. Also included was the com-ponent of ‘the meaning of the role in daily life’ – that is,keeping life as normal as possible, changing one’s values,and reprioritizing.The domain of ‘determining factors’ identified according

to the CFPAC in this review included the component of‘daily enrichment events’ (taking time out and finding pos-itive moments in daily life) and the component of ‘care-giver’s sense of self-efficacy’. These factors are importantif caregivers of cancer patients are to improve the caregivingexperience and perceive positive outcomes.An additional component of ‘determining factors’, not in-

cluded in the CFPAC, was identified and discussed as ‘con-textual factors’. Given that the CFPAC mainly targeted thefamily caregivers of patients with dementia, it was notedthat other contextual factors, such as support resources(social networks, and emotional or social support), and thecaregiver’s characteristics (e.g., age, gender, or health sta-tus), ‘do little to further the understanding of the process thatunderlies the enhancement of positive aspects of caregiving’[20] (p. 336). However, in the context of cancer caregiving,the inclusion of contextual factors would strengthen thedomain of determining factors proposed in the CFPAC.



It is worth to consider other contextual factors, includ-ing cultural influences, gender, age, and relationships withthe patients that may contribute to the experience of care-giving. Two studies have indicated that the complexity ofcultural [27] and culturally sensitive support [39] needs tobe considered when providing support to caregivers. Thefindings related to gender were inconclusive, whereassome studies have reported that women [41,48,55] experi-enced more positive aspects of caregiving and health out-comes than men; others reported that men [14,28,49,54]were more positive in their caregiving experience thanwomen. Caregivers of older age were reported to associatewith positive aspects, including perceived rewards [48],appreciation of life [14], and stronger relationships withcare-receivers [33]. Spousal caregivers were less likelyto report mastery over their lives compared with otherfamily caregivers [48], but there was no differencesbetween spouses and other family members in benefitfinding [14].The time range of the studies included in this review

was from early weeks after the cancer diagnosis [42] to15 months after the death of the patients [37]. Near theend of life experience, caregivers expressed challengesof role transition and adapting to a new life situation[32]. Caregivers also described their desire to have moretime to themselves [27]. When thinking back, the be-reaved caregivers gave accounts of the positive aspectsof their caring experience in terms of discovery of per-sonal strength, personal growth, and understanding themeanings in life [31,37,39,43].Although no study included in this review reported on

the ‘positive outcomes’ of the CFPAC, the positiveaspects of caregiving and their determining factors werefound to have an impact on the positive outcomes of care-givers, such as improving the caregiving experience andthe overall well-being of caregivers.In summary, this review found that positive aspects of

caregiving and their determining factors were related tothe positive outcomes of caregivers. This is congruentwith the viewpoint that various domains in the CFPACare interdependent and all work together to reinforce thepositive outcomes of caregivers [20]. Although both pos-itive and negative outcomes were reported by caregiversof cancer patient, benefit finding or the positive aspectsof caregiving play an important role in improving theoverall well-being of caregivers of cancer patients [14,56].

Study gap identified

Of the 35 articles included in this review, only seven arti-cles were conducted in Asia countries. Of the seven stud-ies, one focused on caregiving experience when patientswere under active treatment [38], two focused on caringfor terminal stage of cancer patients [44,49], and four fo-cused on bereaved caregivers [36,37,39,48].

Although the findings from this review covered all threemain domains of the CFPAC, the imbalance in the studiesfocusing on different domains is noteworthy. Althoughmost studies focused on components of the positive aspectsof caregiving, no study specifically exploring the domain ofpositive outcomes was identified, although several studiesrelating to positive outcomes were found [14,53–56].Studies on caregivers of dementia and cancer patients

led to an inconclusive finding on the determining factorsof positive aspects of caregiving. Studies on caregiversof dementia showed that some other contextual factors,such as support resources, and the caregiver’s characteris-tics, ‘do little to further understanding of the process thatunderlies the enhancement of the positive aspects of care-giving’ [20] (p. 336). However, the findings identified inthis review on the caregivers of cancer patients indicatedthat some factors, such as the experience of hope, socialsupport, and religious coping, other personal characteris-tics, and the health care system, were related to the posi-tive aspects of caregiving.

Limitations of this review

It is essential to acknowledge several limitations of this re-view. A search of the relevant literature was carried outusing six electronic databases that provided comprehensivecoverage of key nursing, medical, and health-affiliatedjournals published in English and Chinese. Publication biascould not be avoided by the literature search process, be-cause studies that are published are those with significant re-sults. All of the 35 articles included in this review werepublished in peer-review journals. The study design,targeted population, data analysis, and findings were clearlydescribed, but the quality of the evidence was not appraised,which may limit the generalizability of this review.Although to our knowledge the CFPAC was the first

conceptual framework to focus on the positive aspects offamily caregiving, it should be noted that the CFPACmainly targets caregivers of dementia. This may lead tosome limitations on its application to the family caregiversof cancer patients. As discussed earlier, the contextual fac-tors identified in this review, for example hope [23,24],social support, and religious coping [14,52], were in thecontext of cancer, and they were found to be difficult tofit into the existing CFPAC.The ‘positive outcomes’ as delineated in the CFPAC

include ‘caregiver well-being’ and ‘involvement continu-ity’ [20]; however, none of the studies included in this re-view examined this domain of the CFPAC. It is theauthors’ view that the domains of ‘positive aspects ofcaregiving’ in CFPAC should be re-considered as ‘posi-tive outcomes’. This suggestion is made on the basis ofthe assertion made by Folkman et al. that ‘the perceptionof growth after a stressful experience is generally exam-ined as an outcome’ [57] (p.766).



Recommendations for future research

Highlighted here are recommendations for health careprofessionals working with cancer couples and researchersto consider in future studies on the positive aspectsof caregiving as perceived by the spousal caregivers ofcancer patients.Given that most studies conducted in both Western and

Asian countries focused on caregiving experience at theend of life or in bereavement period, it is recommendedthat future studies should focus on caregiving experiencethroughout the cancer trajectory, particularly comparingif there are differences of caregiving experience betweenAsian with non-Asian countries.It is recommended that research be undertaken in two

areas: positive outcomes and the determining factors of thepositive aspects of caregiving. Although several positiveaspects of caregiving and determining factors were foundto have an impact on the positive outcomes of caregivers,no study that focused specifically positive outcomeswas identified. It will be valuable to conduct studies on thepositive outcomes of caregiving in the context ofcancer patients.The argument on the determining factors of the positive

aspects of caregiving, such as support resources and thecaregiver’s personality, is inconclusive with regard to thecomparison between dementia and cancer patients. It isworth systematically exploring whether these factors canact as determining factors of the positive aspects of care-giving in the context of cancer.There is a need to develop a conceptual framework or

model specifically on the positive aspects of caregiving asexperienced by the family caregivers of cancer patients. De-veloping such a model will not only shed light on the posi-tive aspects of caregiving specifically in the context ofcancer caregiving but also facilitate the development of in-terventions on the basis of the positive aspects of caregivingto support the family caregivers of cancer patients [20].Findings from this review suggested that future interven-

tion research for caregivers should target on enhancing pos-itive and reducing negative outcomes [48], strengtheningcognitive appraisals, social support, coping skills [24,52],

offering psychosocial support [46]; providing information,and listening to frustrations [47]; facilitating the develop-ment of their ability to accept their situation; and findingmeaning and peace in their caregiving experience[14,36,38,56]. This process has been suggested in themeaning-focused coping [58,59] that supports positive af-fect during stress and be valuable to guide interventiondevelopment.

Conclusion

This literature review revealed that the family caregiversof cancer patients experienced various positive aspects ofcaregiving, such as enhancing their relationship with thecare-receiver, feeling rewarded, discovering personalgrowth, and perceiving personal satisfaction. Severaldetermining factors of the positive aspects of caregivingwere also identified. In addition, gaps in the study, the lim-itations of the literature, and several suggestions for futureresearch were discussed. Overall, there is a lack of literatureon the positive experiences of the spousal caregivers ofcancer patients, with current research on positive caregivingexperiences mainly focusing on the positive aspects ofcaregiving among family members. Further research isneeded to systematically explore the positive experiences ofspousal caregivers, particularly the positive outcomes anddetermining factors of the positive aspects of caregiving.

Author contributions

Both Qiuping Li and Alice Yuen Loke shared the study con-ception. Qiuping Li proposed the study design, conductedthe literature search/analysis and drafting of manuscript[Correction made here after initial online publication]. AliceYuen Loke, the supervision and critical revisions forimportant intellectual content.

Conflict of interest

The authors have no funding or conflicts of interestto disclose.

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