Meaning in stroke family caregiving: A literature review

Geriatric Nursing xx (2016) 1e9

Contents lists available at ScienceDirect

Geriatric Nursing journal homepage: www.gnjournal.com

Feature Article

Meaning in stroke family caregiving: A literature review Jingjun Zhang, PhD Candidate *, Diana T.F. Lee, PhD, RN, FAAN The Nethersole School of Nursing, The Chinese University of Hong Kong, Hong Kong

a r t i c l e i n f o

a b s t r a c t

Article history: Received 5 April 2016 Received in revised form 10 July 2016 Accepted 18 July 2016 Available online xxx

Meaning plays an important role in stroke family caregiving. Understanding meaning facilitates the development of effective interventions that support stroke family caregivers. However, knowledge about this subject is fragmented and sparse. This review fills this knowledge gap by examining existing findings regarding meanings in stroke family caregiving. Specifically, a search of seven databases and a manual search produced a total of five articles for review. Embedded in the lived experience of caregivers, meanings in stroke family caregiving were interpreted as a physical, psychological, and social suffering; an obligation resulting from moral ethics, religion doctrines, others’ expectations, and social norms; and a subjective choice based on love, hope, and a sense of reciprocity. However, the detailed process of how and when caregivers identify meaning in caregiving needs further exploration. To gain a full picture of meaning in caregiving, more studies should be conducted among stroke family caregivers from different cultural, economic, and social backgrounds. Ó 2016 Elsevier Inc. All rights reserved.

Keywords: Stroke family caregiving Meaning in caregiving Literature review

Introduction Interest in caregiving issues is growing along with the increasing attention on the aging population and chronic illnesses.1 A large number of family members become family caregivers who provide support to their loved ones who are older, sick or disabled.2 As one of the leading causes of death and disability in the world, stroke exerts a significant effect not only on patients but also on family caregivers.3e5 A large body of research examines the burdens and negative consequences of stroke family caregiving.1,4e6 However, evidence also indicates that caregivers can perceive benefits in their caregiving experience, such as an increased satisfaction to life, a feeling of being needed and appreciated, and the development of a positive attitude toward life.7,8 The issue on the differences between family caregivers who adapt and thrive under demanding circumstances and those who report a compromised well-being has attracted the attention of numerous researchers.9e11 A number of researchers have tried to explore this topic by exploring meaning in caregiving.9e11 Meaning in caregiving has emerged from the coping and adaptation literature with the potential to explain some of the variations in caregiver outcomes.12 The individual differences in the meanings perceived through caregiving may lead to different

* Corresponding author. Present address: The Chiang’s Building, The Chinese University of Hong Kong, Shatin, N.T., Hong Kong. E-mail address: [email protected] (J. Zhang). 0197-4572/$ e see front matter Ó 2016 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.gerinurse.2016.07.005

reactions to caregiving and thus result in different caregiving consequences.9e11,13 Farran et al14 found that the absence of meaning in caregiving may result in despair and hopelessness. Caregivers who fail to find meaning in caregiving may endure anxiety and depression and develop a low self-esteem. By contrast, caregivers who are able to find positive meaning in caregiving and derive something positive out of it could reinforce their desire to provide care.15 Konstam et al16 suggested that finding positive meaning in caregiving is the key to understanding well-being among caregivers of patients with Parkinson’s disease and is a source of empowerment. Efforts have been made to uncover the meaning in caregiving among caregivers of patients with long-term illnesses, such as dementia,17,18 cancer,19,20 and HIV.21 However, given that stroke family caregivers usually assumed their roles suddenly and with barely enough preparation, their caregiving experience and perceived meaning may be different from those of caregivers of people with other chronic illnesses. Therefore, an understanding of the meaning in caregiving among stroke family caregivers is needed to inform the development of individualized interventions that effectively support stroke family caregivers. This review was aimed at exploring the meaning in caregiving among stroke family caregivers. The objectives were to summarize the studies related to the purpose of this review published from 2000 to 2015; to identify reported meanings in the caregiving experiences of family members looking after stroke survivors; and to make recommendations for future research in this area of inquiry.

2

J. Zhang, D.T.F. Lee / Geriatric Nursing xx (2016) 1e9

Table 1 Quality assessment for qualitative studies. Criteria

Bäckström and Sundin25

Wallengren et al26

Wallengren et al27

Bäckström et al28

Kitzmüller et al29

1. Is there a clear connection to an existing body of knowledge/wider theoretical framework? 2. Are research methods appropriate to the question being asked? 3. Is the description of the context for the study clear and sufficiently detailed? 4. Is the description of the method clear and sufficiently detailed to be replicated? 5. Is there an adequate description of the sampling strategy? 6. Is the method of data analysis appropriate and justified? 7. Are procedures for data analysis clearly described and in sufficient detail? 8. Is there evidence that the data analysis involved more than one researcher? 9. Are the participants adequately described? 10. Are the findings presented in an accessible and easy to follow manner? 11. Is sufficient original evidence provided to support the relationship between interpretation and evidence? Agreed total score

1 1 1 1 0 1 1 1 1 1 1

1 1 1 1 0 1 1 0 1 1 1

1 1 1 1 0 1 1 0 1 1 1

1 1 1 1 0 1 1 0 0 1 1

1 1 1 1 0 1 1 1 0 1 1

10

9

9

8

9

Maximum possible score 11 and minimum 0.

Methods

Data abstraction and synthesis

Search strategies

The two authors (JZ and DL) independently extracted data from each eligible study. Information about the characteristics of the informants and the methodological characteristics of the studies, such as the study setting, research design, and sampling methods, was described to provide a context for data synthesis. The data were synthesized by using the thematic synthesis method developed by Thomas and Harden.30,31 This method has been used in several systematic reviews that address questions about people’s perceptions and experiences.31 Thematic synthesis is aimed at achieving analytical abstraction at a higher level by rigorously examining the overlaps and elements that are common among primary studies.30,31 Thematic synthesis was performed in the current review to explore the meanings in caregiving among stroke family caregivers. The detailed synthesis process involves three steps: free line-by-line coding of the findings of primary studies, organization of these “free codes” into related areas to construct “descriptive” themes, and development of “analytical” themes.30,31 In the first step, the authors (JZ and DL) independently extracted and synthesized study findings using free line-by-line coding to generate codes. The primary studies were read several times to achieve immersion. The participant quotations and text under the “findings” or “discussion” sections of the included studies were extracted. Then, the authors (JZ and DL) independently coded each line of the text according to the purpose of the review. The second step was to organize the codes into descriptive themes. The similarities and differences among the initial codes were discussed and compared by the two authors (JZ and DL). Similar codes were then grouped together and translated into new codes that captured the meanings of the groups of initial codes. New codes were also created when necessary. The agreement upon the new codes between the authors (JZ and DL) resulted in a preliminary synthesis (i.e., descriptive themes) of the meanings in caregiving among stroke family caregivers. The last step was to achieve new interpretations of the meanings in caregiving that went beyond the primary studies. The preliminary findings were reviewed by the authors (JZ and DL) independently to ensure that key data were captured from the included studies. Then, the descriptive themes were abstracted and reinterpreted inductively to produce abstract and analytical themes. Discrepancies were discussed by the authors (JZ and DL), and the analytical themes were agreed upon.

A computerized literature search was conducted from 2000 to 2015. Seven databases were searched: AMED, CINAHL Plus, EMBASE, MEDLINE, PsycINFO, 中國期刊全文數據庫 China Journal Net (CJN), and 萬方數據 WanFang Data. The search terms included stroke AND (caregiver* OR carer* OR caregiving OR caring) AND (meaning* OR meaning-making OR meaning-searching OR meaning-finding OR meaning-seeking). Chinese research terms included (“腦卒中” OR “中風” OR “腦血管意外”) AND (“照顧者” OR “家屬” OR “配偶” OR “子女”) AND (“意義” OR “尋找意義” OR “意義構 建”). A manual search was also conducted to identify relevant articles from reference lists. A stroke family caregiver refers to an unpaid or a not professionally trained caregiver who provides care to a partner, spouse, relative, or friend who suffers from a stroke in the acute, rehabilitation, or chronic phase. All study designs, including the quantitative, qualitative, and mixed-method studies, were included. Studies published in either English or Chinese with a focus on caregivers’ experiences, emotions, and responses regarding meaning were included. The exclusion criteria covered (i) the studies that were not peer reviewed, (ii) those with full text that cannot be extracted; (iii) those without primary data or with data for caregivers and care recipients that cannot be clearly stated or separated; (iv) those that focused on one stroke-related condition and excluded general experiences or those that focused on improving service/research instead of reporting the caregiving experience related to meaning. Quality appraisal The quality of the articles was appraised with an 11-item rating scale developed by Greenwood et al22,23 in their reviews of informal primary caregivers of stroke survivors. The items in the scale were based on the strategies used by Mays and Pope24 in their qualitative research assessment. These items were not intended to exclude articles but were used to systematically investigate and question the content of the papers. Items include, for example, whether the method is suitable for the research question and whether the descriptions of the method and data analysis are sufficiently clear and detailed to be replicated. Table 1 outlines all the items included in the scale. The rating scale is easy to apply and can lead to a close agreement between different critics. The total score ranges from 0 to 11.22 A higher score indicates more quality elements is recorded in the study.22

Results The search identified 646 articles (637 articles through database search and 9 articles from manual search) (Fig. 1). All articles were

J. Zhang, D.T.F. Lee / Geriatric Nursing xx (2016) 1e9

Articles identified through database searching (n = 637)

3

Additional articles through hand search (n = 9)

Articles after duplicates removed (n = 476)

Removal of duplicates (n = 170)

Removal of irreverent article

Articles potentially relevant

Title screening (n = 420)

(n = 19)

Abstract screening (n = 37)

Full-text articles assessed for

Full-text articles

eligibility (n = 12)

excluded (n = 7)

Studies selected and underwent appraisal (n = 5) Fig. 1. Flow diagram of studies retrieval and selection.

published in English. After the removal of duplicates and irrelevant articles, 19 articles were considered relevant to the topic. Among them, 12 articles offered full-text availability and were assessed for eligibility. Then, 7 studies were excluded because separating caregiver and survivor data was impossible, retrieving stroke caregiver data from mixed data of caregivers of multiple disease groups was impractical, or the data were mainly focused on service improvement. Ultimately, 5 articles were included in the final review (Tables 2 and 3).

Characteristics of informants The informants of the five studies were family caregivers of stroke patients. Stroke survivors are mainly from rehabilitation clinics25,28 and stroke centers.26,27 The ages of the caregivers were reported in all the studies with a wide range within and between studies. The youngest reported age was 30 years old,26 and the oldest was 80 years old.27 Most (82.14%) of the caregivers were female. More than half of the informants (55.36%) finished secondary school or higher.25e27 About 60% of the caregivers were unemployed. Experience in terms of the duration of caregiving was described in three studies.26,27,29 The caregivers’ experiences ranged from one month25,26 to more than three years.29 Caregivere survivor relationships were reported in all studies, with spouses making up the majority of them. Not all studies gave further details, but of those which did, children were the next highest category.26,27 Although reported, the details about the stroke survivors were not as extensively described as the details about the caregivers (see Table 2).

Methodological characteristics of the studies All the studies were conducted in Western countries: four were conducted in Sweden,25e28 and one was conducted in Norway.29 All the studies adopted a qualitative approach using the hermeneutic phenomenological method to illuminate the meaning in caregiving among stroke family caregivers. Four studies followed the philosophy of Ricoeur,25e28 whereas one followed that of Heidegger.29 The samples of two studies27,28 were drawn from two earlier studies conducted by the same first authors.25,26 As the two dyads had different timings, both were included in the present review to gain an expanded knowledge of caregiving experience. The sample sizes ranged from 428 to 17,29 leading to a total of 56 caregivers. Sampling techniques were not clearly reported in all the studies, although two studies stated that the samples were “consecutively included.”25,28 The data in all the studies were mainly collected through audiotaped interviews. The duration of the interviews varied widely from 30 min26,27 to 210 min.29 The timing of data collection was also significantly different across studies. Four studies were conducted post discharge from hospitals or rehabilitation centers,25,27e29 with the period varying from one month25 to more than three years.29 The remaining ones were conducted within the first month following the patients’ admission.26 One study collected data more than once: at 1, 6, and 12 months post discharge.28 In addition to interviews, field notes and observations were used in data collection.29 All studies, except for one,29 used a three-step analysis method, which was developed and presented by Lindseth and Norberg32 and included naive reading, structural analysis, and comprehensive understanding. This data analysis method was inspired by the

4 weeks

Not stated

2 cerebral infarction 2 intracerebral hemorrhage

Not stated

Not stated

4/0

14/9

Not stated

32e68 All spouses >3 years Not stated 4/13 Not specifically stated 17

32e65

0/4 Rehabilitation clinic 4

40e58

Not stated

4 spouse <1 year

6 months

employed unemployed retired full-time part-time 2 2 5 2 2 2 primary school 5 high school 2 university Not stated 1/8 Stroke centers

Wallengren et al 2008 Sweden Bäckström et al 2010 Sweden Kitzmüller 2012 Norway

9

47e80

3e25 years

Not stated

Not stated Not stated Not stated

6 8 1 1 5 4 1 month 7 employed 3 unemployed 6 retired Stroke centers 16

30e79

3/13

3 primary school 10 high school 4 university

2 spouses 2 mothers 6 others 1 month Rehabilitation clinic 10

Bäckström and Sundin 2007 Sweden Wallengren et al 2008 Sweden

40e64

2/8

6 high school or less 4 university

9 employed 1 retired

spouses daughters daughter-in-law friend spouses daughters

42e58

12e33 weeks 4 cerebral infarction 4 intracerebral hemorrhage 2 subarachnoid hemorrhage 8/2 23e58

Not stated

Time since stroke Diagnosis Duration of caring Sample resource Sample size Authors Date Country

Age (years) Stroke caregivers Study

Table 2 Details of stroke family caregivers and stroke survivors.

Gender (male/ female)

Education

Employment

Relationship to survivor

Age (years)

Gender (male/ female)

J. Zhang, D.T.F. Lee / Geriatric Nursing xx (2016) 1e9

Stroke survivors

4

theory of interpretation from Paul Ricoeur and is suitable for interpreting interview texts in hermeneutic phenomenological studies.32 Quality ratings The quality rating of the studies was conducted independently by the two authors. Discrepancies were discussed, and the total rating scores were agreed upon. The reviewed studies were considered to be of satisfactory methodological quality. The scores ranged from 8 to 10 out of 11 (see Table 1). All of the studies were considered to have selected an appropriate research method for their aims. Although these studies clearly described the detailed procedures of the data analyses, the persons who undertook the analyses were not clearly reported. Moreover, sampling procedures were not well described in these studies. Findings Meaning in stroke family caregiving Meanings in stroke family caregiving were described in terms of themes and described experiences, with the evidence reported verbatim as words or phrases in the five included studies. Exactly 83 quotations from 56 participants were extracted, and text under the “findings” or “discussion” sections of the primary studies was synthesized. Sixteen descriptive themes that were derived to closely match the original findings of the included studies were identified. The findings of each study were combined into a whole via a listing of themes that illuminated the meanings in caregiving among stroke caregivers (see Table 3). Finally, three analytical themes regarding meaning in stroke family caregiving were identified from the included studies: (i) caregiving as suffering, (ii) caregiving as an obligation, and (iii) caregiving as a subjective choice. Caregiving as suffering The caregivers of the stroke survivors regarded caregiving as a suffering. Caregivers faced dramatic changes in their life situation without forewarning.25,26 They undertook the demanding caregiving role quite suddenly and without fully understanding and preparing for the situation. As a result, they viewed caregiving as a form of suffering, which caused the development of physical symptoms, psychological/emotional problems, and social issues. Providing care to stroke survivors was an added task that changed routine family activities, caregivers found difficulty in meeting their own physical needs. As a result of the chaotic life situation and additional task brought about by caregiving, caregivers described experiencing physical symptoms, such as stomach pain, high blood pressure, fatigue, physical pain, and sleep disturbance.27 Nausea, tiredness, restlessness, palpitations, and constipation were also found among stroke caregivers.25,26 Furthermore, being a family caregiver of a person who had suffered from a stroke was psychologically and emotionally arduous. The caregivers in all the reviewed studies talked about feelings such as uncertainty,25e29 anxiety,25e29 alienation,25e29 fear,25e29 frustration,25e28 feeling of abandonment,25e28 25,26,28 26,28 25,29 grief, loneliness, and helplessness. Other psychological and emotional problems included feeling of vulnerability, passivity, and loss of wholeness.26,27 Changes in social life as related to others and society were cited as another source of suffering. Caregivers found that their relationships with other persons were negatively influenced and restricted by their caregiving role.27 They lost the freedom to perform ordinary daily duties and do things on their own because of the need to be always accessible to care recipients. They were

Table 3 Details of the five reviewed studies. Aims

Method

Settings

Data collection method

Timing

Data analysis

Findings/themes

Bäckström and Sundin25

To illuminate meanings in the lived experience of being a middle-aged close relative of a person who has suffered a stroke, 1 month after discharge from a medical rehabilitation clinic To illuminate the meaning of going from being just a relative to gradually becoming a relative to a stroke victim from the time of the stroke event and the first weeks on To illuminate the meaning of being a relative of a stroke survivor in the first six months after hospital discharge To illuminate the meanings of the middle-aged female spouses’ lived experience of the relationship with a partner who has suffered a stroke during the first year after their partner’s discharge from a rehabilitation clinic To uncover the existential meaning of couples’ long-term experience of living with stroke

Hermeneutic phenomenological method

Outside informants’ home, with the exception of 2 interviewees

Audiotaped narrative interviews 40e75 min

3e4 weeks after discharge

Three-step phenomenologicalhermeneutic interpretation methoda

Being called to mission; Feeling set adrift; Struggling to keep going

Hermeneutic phenomenological method

10 in hospital 6 in informants’ home

Tape-recorded openended interviews 30e90 min A Pilot interview

First 4 weeks following admission

Three-step phenomenologicalhermeneutic interpretation methoda

Being in chaos; Searching for order in chaos

Hermeneutic phenomenological method

All in informants’ home

Audiotaped narrative interviews 30e90 min

6 months after discharge

Hermeneutic phenomenological method

At the informants’ home or workplace

Tape-recorded narrative interviews 40e80 min

At 1, 6 and 12 months after discharge

Three-step phenomenologicalhermeneutic interpretation methoda Three-step phenomenologicalhermeneutic interpretation methoda

Awareness of the irrevocably altered life; Being strong in the altered life situation A Process of transition; Recognition of the loss of the relationship; Reconciliation with the changes

Hermeneutic phenomenological method

In participants’ homes or in hotel rooms

Audio-recorded interviews 60e210 min Field notes Observations

Over 3 years

Thematic analysis The themes and the constitutive patterns were discussed with survivors, spouses, and a speech therapist

Thrownness from the familiar being-in-theworld; Struggling to grasp rays of hope; Fear of dying, living, and caring; Wavering experiences of time; Reinterpreting the lifeworld; Struggling to adapt to an abruptly twisted and unfamiliar being-inthe-world

Wallengren et al26

Wallengren et al27

Bäckström et al28

Kitzmüller et al29

a

J. Zhang, D.T.F. Lee / Geriatric Nursing xx (2016) 1e9

Study

The three-step phenomenologicalehermeneutic interpretation method includes naive interpretation, structural analysis and comprehensive understanding.

5

6

J. Zhang, D.T.F. Lee / Geriatric Nursing xx (2016) 1e9

shackled to their homes with a decreased social life. Thus, they felt imprisoned by the caregiving role and estranged from others.25 When they did not feel understood by others, they lost their interest in maintaining relationships with others, which in turn deepened the estrangement from others and society. Caregiving as an obligation Caregiving was regarded as an obligation of stroke family caregivers. Caregivers felt duty bound and were obligated to care for stroke survivors. This obligation was perceived as a full-time responsibility that required concentration and strength and involves feeling pressured by the demand to be present and available. This obligation was deeply rooted in the caregivers’ innermost life goals, values, and moral principles.25,28 Some caregivers described the need for them to be strong and responsible for the stroke survivors whom they loved and with whom they wanted to live their life.26,28 Bäckström et al found that apart from ethical demands and concern over fidelity to stroke survivors, spouse caregivers were somehow forced into caregiving because of their love for their partners as they were before the stroke.28 They felt unreflectively duty-bound as they were “called to mission.”25 Caregiving was also deemed by caregivers as an obligation according to religious doctrines. Guided by the Golden Rule described in the Bible, some Christian caregivers felt a self-imposed ethical demand decreeing that they must try their best to care for their spouses.28 Furthermore, expectations from others and the society left the caregivers with no choice but to accept the responsibility.25,28 For example, spouse caregivers were required to act ethically according to the ethical responsibility of conjugal fidelity.28 Some caregivers reported feelings of being demanded, pushed, and forced by others and “would never have done it (caregiving) voluntarily.”25 In addition, one caregiver stated that her cultural background forbade her to commit her husband to a nursing home but that caregiving was an undesirable task for her.29 Since the caregivers felt obligated to respond to and take responsibility for their loved ones, they put all their strength into the care of the stroke survivors. Feelings of letting loved ones down or even guilt were aroused when they failed to provide what they perceived as the best care for the stroke survivors. Caregiving as a subjective choice Caregivers expressed a growing desire to find new meanings in their caregiving experience in spite of the dramatic changes in their life.28 This desire came from their free will to make their own choices.27 The caregivers’ subjective choices were derived from love, hope, and a sense of reciprocity.25,28,29 Some caregivers considered caregiving as a natural development out of years of togetherness and as a free choice based on love.28 They answered the unspoken demand from their loved ones who had suffered a stroke and considered caregiving to be dependent upon natural love. Caregivers resigned themselves to the demanding caregiving role and devoted themselves and their own time to caring for stroke survivors.27 The love, concern, and care brought forth hope and motivated the caregivers to keep going on.29 Holding onto hope and good things in life was of great importance for the caregivers. Hope helped them go through their crises immediately after the stroke and toward long-term care.25,26,29 Hope could come from the progress of the recovery of the stroke survivors. Hope played a crucial role in the caregivers’ search for continuity and meaning in their lives.29 Caring and supportive relationships with their family members, friends, and healthcare professionals also strengthened the caregivers’ feeling of regaining hope.25e27,29

According to the caregivers, providing care to a loved one was a free choice that they made to regain a sense of reciprocity.28 When the stroke survivors sought out closeness and tenderness, the caregivers worked hard to reciprocate it.28 Caregivers searched for mutuality, a “vision of us,” and a shared life, and they held onto visions of and hope for change in the future.28 Finding meanings in stroke family caregiving Caregivers could perceive different meanings in their caregiving experience. The unexpected caregiving role may lead to a complex and stressful life situation, which could, in turn, have important consequences for stroke family caregivers. Although stroke family caregiving is a challenging process, certain steps can be undertaken to change the demanding situation and its consequences. In the reviewed articles, the family caregivers became aware of their own strength and actively sought out order and stability in their dramatically changed life situation. They tried their best to search for meanings in their caregiving situation and move out of their own passivity into activity by means of coping. The caregivers made efforts to cope with their sufferings and avoid surrender in their altered life. They managed to adapt to their new lives by employing a number of coping strategies. Living in the present was one of the coping strategies mentioned.25,26 By taking on their new lives one day at a time, the caregivers managed to distract themselves from thoughts about their uncertain future.25,26 They approached the realities little by little instead of suddenly confronting a future that could entail great difficulties and death.25,26,29 In addition to concentrating on the present, some caregivers paid close attention to their future way of being.25,26,28,29 They tried to reinterpret their life world and sought normality in a new way of living.25,28,29 Another coping strategy was to gain strength from themselves and others. The caregivers found strength in themselves. They searched for knowledge regarding caregiving, resolved practical problems, and continued to work and live as usual.25,26,28 The feeling of privacy and having control over their own lives gave them a sense of being themselves and being “normal.”27,28 The progress of recovery also gave the caregivers strength to keep going, as they worked diligently to care for their loved ones.28 Communication with friends, loved ones, or anyone willing to listen to produced feelings of confirmation and of not being forgotten.25,27e29 Actively associating with health professionals and other caregivers also gave comfort to the caregivers and granted them feelings of relief and confidence in handling their challenging situation.28,29 Caregivers regarded keeping hope alive and thinking positively as other ways of coping.25e29 They made efforts to see the positive aspects of their loved ones and themselves.28 They tried to enjoy life and see the values.25 They searched for positive aspects in life, including appreciating what they still have instead of mourning what has been lost.27 The stroke caregivers made sense of their coping process and gave meanings to their caregiving experience. When the caregivers succeeded in reinterpreting the twisted and unfamiliar life-world and becoming familiar and well-adapted, they were more likely to ascribe positive meanings to their experiences.28,29 However, not all the caregivers’ reinterpretations of caregiving turned out to be positive. When the burden of caregiving became overwhelming, the caregivers recognized a loss in the value of their lives, and they were unable to find positive meanings in them.28,29 Nevertheless, the detailed process and the individual difference in meanings attributed to caregiving experience were poorly described in the studies reviewed in this work. Some researchers indeed discussed the meaning-finding process among stroke caregivers, focusing on the timing of the emergence of positive meanings. The timing of the meaning-finding process was discussed in the two studies included

J. Zhang, D.T.F. Lee / Geriatric Nursing xx (2016) 1e9

in the present review. One study found that the caregivers remained trapped in a similar chaotic situation after giving care for six months.27 However, findings in the other studies revealed that after about one year of caregiving, the caregivers were able to reach mental emancipation, a point that indicated that the caregivers have adapted to a changed life situation and have made efforts to reconstruct their life in a new way.28 The timing of the meaningfinding process was also referred to as a “turning point.”26 Wallengren et al26 noted that a “turning point” exists in the development of the care givingereceiving process. When a family member manages to reach the “turning point,” she or he could become a successful caregiver of a stroke survivor. Discussion This review set out to summarize the existing evidence from five qualitative studies to clarify the meaning in caregiving among family caregivers of stroke survivors. Despite the variations in the characteristics of the informants and the study designs, meaning in stroke family caregiving can be interpreted as suffering, an obligation, and a subjective choice. Although the three meanings in stroke caregiving are insightful because they indicate that meaning in stroke caregiving carries both positive and negative aspects during the dynamic process of caregiving, little is known about the detailed process of how and when stroke caregivers identify meaning in their caregiving. Dual character of meaning in caregiving Meaning is ubiquitous and underpins how we experience emotions, behave, and even respond physiologically. In the stress and coping paradigm characterized by the work of Lazarus and Folkman, meaning is regarded as a mediator of the stress process.33,34 People naturally search for meaning amid stressful experiences, such as providing care to a family member suffering from a stroke. Since they usually take up the stressful caregiving role unprepared, the stroke family caregivers naturally gave meanings to the unexpected situation. According to Giuliano et al,35 meaning in caregiving refers to the “positive beliefs one holds about one’s self and one’s caregiving experience such that some benefits or gainful outcomes are construed from it.” Positive beliefs in caregiving were further elaborated in various studies. Reid et al36 found that caregivers hold a sense of reciprocity or balance in the give-and-take process of caregiving according to social exchange and equity theories. Similarly, data in this review also suggested that spouse caregivers chose to regain a sense of reciprocity to keep holding onto the marital relationship with their partners.28 However, this sense of reciprocity was only reported among spouse caregivers.28 Reciprocity among other groups of caregivers, such as those providing care to their parents, was not found in this review and should thus be further elaborated. Caregivers also make sense of their caregiving role by following their cultural traditions.37 Culture exerts an obvious impact on caregiving, and caregiving experience differs significantly among different cultural groups.37 One study in this review found that cultural background may force caregivers into caregiving as “an undesirable task.”29 Cultural differences were also reported in caregiving outcomes.38 For example, the perceived caregiving burden of ChineseeCanadian family caregivers was influenced by filial piety, which served as a protective function to reduce negative appraisals and to enhance the positive appraisal of the caregiving burden.38 Differences in caregiving-related distress were reported between Chinese, Vietnamese, and Caucasian family caregivers.39 The stroke caregivers regarded their support and caregiving as natural love and fidelity toward their loved ones.25,28

7

Studies on the caregivers of patients from other disease groups, such as dementia,15 and the elderly40,41 revealed that filial piety is one of the most widely reported positive beliefs held by Asian caregivers.37,42 Filial piety is the fundamental idea in Confucian ethics for the Chinese and a few other Asian cultures. However, since no Asian studies have been identified, all the reviewed studies in the current work were conducted in Western populations. Thus, meaning in stroke caregiving among non-Western populations with different cultural, economic, and social backgrounds remains unclear. Other positive meanings in caregiving, such as uplifts in caregiving, caregiver esteem, caregiver satisfaction, and personal gains, are not uncommon in the caregiving literature.43,44 However, this review rarely found positive meanings in the stroke family caregiving studies. This finding may be explained by the stressful nature of stroke caregiving, which causes caregivers to fail in finding positive meanings in their roles. The relatively few studies in this area provided a limited picture of stroke caregiving. Caregivers may be obligated to take on caregiving as a result of their ethics, religious doctrines, expectations from others, and social norms. They are left with no choice but to accept the caregiving task, which then causes suffering for them. Suffering is a universal human experience. Rodgers and Cowles45 defined suffering as “an individualized, subjective, and complex experience that involves the assignment of an intensely negative meaning to an event or a perceived threat.” Stroke family caregivers experience suffering in caregiving because of their altered life situation and the demanding nature of caregiving. They are thrown into a complicated and unfamiliar life situation that comes as a huge burden for their physical, psychological, and social well-being. Overwhelmed by the feelings of uncertainty,25e29 anxiety,25e29 alienation,25e29 fear,25e29 and frustration,25e28 the stroke caregivers in the reviewed studies regarded caregiving as a huge suffering that they had to endure. A similar finding was reported by Greenwood and Mackenzie,23 who also suggested that the experience during caregiving is centered on change and loss. The altered life situation leads to suffering, which results in the negative outcomes of caregiving, which come in the form of physical symptoms, psychological problems, and absence of or restricted social life.23 Finding positive meaning in caregiving Finding purpose and positive meaning is the fundamental desire of humans and the basic driving force of life that may relieve caregivers of their suffering and bring them spiritual wellness.46 Folkman and Moskowitz proposed that meaning can be a form of coping that generates a positive effect through the interpretation of events with positive meaning.47 Stroke caregivers make efforts to deal with their stressful situation and struggle to keep going and search for meaning in caregiving. Among all the coping strategies cited by the caregivers in the reviewed articles, living in the present was the most widely reported.25,26 Living day by day and accepting help from others can help stroke family caregivers achieve satisfaction and identify meaning arising from caregiving.23 Furthermore, living in the present was identified by caregivers belonging to other disease groups, such as dementia48 and Alzheimer’s disease.17 Stroke caregivers’ coping responses to these changes in their life situation may lead to positive meanings, which lead to acceptance and adjustment to the given situation.23,49 Similar findings were found in the research on other disease groups. Frankl50 revealed that people “create” meaning by making choices and “find” meaning through suffering. Taking a step further, Farran et al14 developed the Interactive Model for Finding Meaning through Caregiving in an attempt to explain why and how some Alzheimer’s disease family caregivers play their role excellently under negative conditions. In this model, meaning

8

J. Zhang, D.T.F. Lee / Geriatric Nursing xx (2016) 1e9

is described as “provisional meaning” and “ultimate meaning.”14 Provisional meaning refers to meaning obtained through shortterm or transitory experiences, such as day-to-day tasks and attitudes.14 Ultimate meaning refers to the deeper philosophical, religious, or spiritual attributions associated with the experience of caregiving, which could be achieved through connections with a higher power or through a sense of purpose in life.14 Each individual’s experience and meanings in caregiving are dynamic and may change over time. In the reviewed articles, the caregivers of stroke survivors were able to find positive meanings after about one year of caregiving.28 The stroke family caregivers reached a “turning point,” in which chaos moved toward order and stability.26,27 Rehnsfeldt and Eriksson51 defined “turning point” as “a point where caregivers give themselves opportunities to express their suffering, and gradually come to understand their situations.” Through this struggle and understanding, people can turn their suffering from being unbearable to being bearable (i.e., they create meaning through suffering).51 However, the studies in this review failed to answer the questions regarding the factors that could affect the “turning point” and the manner by which people reach this turning point to find meaning in caregiving. Thus, the process through which stroke caregivers find meaning remains unclear. Limitations of the review Given that all the included articles were qualitative studies, several methodological limitations were identified: the gaps between the experiences of the participants from the original studies, the epistemological stance of the researchers of the primary study, and the reviewer’s interpretation.52 The potential risks of losing sight of the diversity of participants and their experiences as the process of synthesis inevitably reinforces similarity among studies instead of identifying differences. Practical limitations were also noted. We only included published, peer-reviewed studies. A gray literature search was not undertaken, possibly resulting in unidentified studies. Adding another language in addition to English and Chinese would broaden our understanding of caregiving in other cultures. Conclusion and recommendations Caregivers find both positive and negative meanings in the caregiving process. Meaning in stroke family caregiving is interpreted as a physical, psychological, and social suffering; an obligation stemming from moral ethics, religious doctrines, expectations from others, and social norms; and a subjective choice based on love, hope, and a sense of reciprocity. Meanings are associated with caregiving experiences and the way in which caregivers cope with the demanding situation. The diversity of caregivers’ perceived meanings in their caregiving experience, which are positive and negative, should be considered by health and social care professionals when they endeavor to support these caregivers. Offering cognitive and behavioral training to caregivers, including a focus on positive meanings in caregiving experiences, may be beneficial and may need further consideration. Health care providers should assist family caregivers in seeking knowledge about caregiving or in solving practical problems to improve patients’ recovery, which may subsequently increase caregivers’ strength and confidence in caregiving and thus enhance their meaning-finding process. Health and social care professionals should also pay attention to individual differences in the meaningfinding process to develop individualized interventions to support caregivers. As culture may have an influence on the meanings ascribed to caregiving experiences among different cultural groups,37

differences in the cultural background should be considered when attempting to understand family caregiving among different populations. In this review, the study participants were from Western populations. Therefore, attention should be paid to caregivers from different backgrounds, who may have different meanings in caregiving because of their unique cultural, economic, and social backgrounds. Furthermore, the meanings perceived by caregivers may be affected by the severity of the stroke of the survivors. To gain a full picture of caregiving, as well as the meanings in it, additional research should focus on caregivers of stroke survivors in different stages, such as the acute stage and rehabilitation stage. In addition, the process of how meaning is found was poorly described in the reviewed articles. Thus, efforts should be made to uncover the essence of this critical and vital process that every caregiver may go through. Only when researchers are able to answer the question about how meaning in caregiving is found, can they develop more effective and targeted interventions to improve the well-being of caregivers and care recipients. References 1. Roth DL, Fredman L, Haley WE. Informal caregiving and its impact on health: a reappraisal from population-based studies. Gerontologist. 2015;55(2):309e319. http://dx.doi.org/10.1093/geront/gnu177. 2. Marcén M, Molina JA. Informal caring-time and caregiver satisfaction. Eur J Health Econ. 2012;13(6):683e705. http://dx.doi.org/10.1007/s10198-0110322-2. 3. Gbiri CA, Olawale OA, Isaac SO. Stroke management: informal caregivers’ burdens and strains of caring for stroke survivors. Ann Phys Rehabil Med. 2015;58(2):98e103. http://dx.doi.org/10.1016/j.rehab.2014.09.017. 4. Jaracz K, Grabowska-Fudala B, Górna K, Jaracz J, Moczko J, Kozubski W. Burden in caregivers of long-term stroke survivors: prevalence and determinants at 6 months and 5 years after stroke. Patient Educ Couns. 2015;98:1011e1016. http://dx.doi.org/10.1016/j.pec.2015.04.008. 5. Jaracz K, Grabowska-Fudala B, Kozubski W. Caregiver burden after stroke: towards a structural model. Neurol Neurochir Pol. 2012;46(3):224e232. http:// dx.doi.org/10.5114/ninp.2012.29130. 6. Wu Z. Editorial: introduction to special issue on aging families. Can J Aging/La Rev Can du Vieil. 2014;33(04):351e354. http://dx.doi.org/10.1017/ S0714980814000403. 7. Kruithof WJ, Visser-Meily JM, Post MWM. Positive caregiving experiences are associated with life satisfaction in spouses of stroke survivors. J Stroke Cerebrovasc Dis. 2012;21(8):801e807. http://dx.doi.org/10.1016/j.jstrokecerebr ovasdis.2011.04.011. 8. Cameron JI, Stewart DE, Streiner DL, Coyte PC, Cheung AM. What makes family caregivers happy during the first 2 years post stroke? Stroke. 2014;45(4): 1084e1089. http://dx.doi.org/10.1161/STROKEAHA.113.004309. 9. Hosseinpoor AR, Bergen N, Chatterji S. Socio-demographic determinants of caregiving in older adults of low- and middle-income countries. Age Ageing. 2013;42(3):330e338. http://dx.doi.org/10.1093/ageing/afs196. 10. Park C, Shin DW, Choi JY, et al. Determinants of the burden and positivity of family caregivers of terminally ill cancer patients in Korea. Psycho-Oncology. 2012 Mar 1;21(3):282e290. 11. Kang J, Shin DW, Choi JE, et al. Factors associated with positive consequences of serving as a family caregiver for a terminal cancer patient. Psycho-Oncology. 2013 Mar 1;22(3):564e571. 12. Noonan AE, Tennstedt SL, Rebelsky FG. Making the best of it: themes of meaning among informal caregivers to the elderly. J Aging Stud. 1997 Feb 28;10(4):313e327. 13. Quinn C, Clare L, McGuinness T, Woods RT. The impact of relationships, motivations, and meanings on dementia caregiving outcomes. Int Psychogeriatr. 2012;24(11):1816e1826. http://dx.doi.org/10.1017/S1041610212000889. 14. Farran CJ, Keane-Hagerty E, Salloway S, Kupferer S, Wilken CS. Finding meaning: an alternative paradigm for Alzheimer’s disease family caregivers. Gerontologist. 1991;31(4):483e489. http://dx.doi.org/10.1093/geront/31.4.483. 15. Quinn C, Clare L, Woods RT. The impact of motivations and meanings on the wellbeing of caregivers of people with dementia: a systematic review. Int Psychogeriatr. 2010;22(1):43e55. http://dx.doi.org/10.1017/S104161020999 0810. 16. Konstam V, Holmes W, Wilczenski F, Baliga S, Lester J, Priest R. Meaning in the lives of caregivers of individuals with Parkinson’s disease. J Clin Psychol Med Settings. 2003 Mar 1;10(1):17e25. 17. Farran CJ, Miller BH, Kaufman JE, Donner E, Fogg L. Finding meaning through caregiving: development of an instrument for family caregivers of persons with Alzheimer’s disease. J Clin Psychol. 1999;55(9):1107e1125. 18. Shim B. Finding Meaning in the Dementia Caregiving Relationship. Available at: http://dukespace.lib.duke.edu/dspace/handle/10161/3834; 2011.

J. Zhang, D.T.F. Lee / Geriatric Nursing xx (2016) 1e9 19. Li Q, Loke AY. The positive aspects of caregiving for cancer patients: a critical review of the literature and directions for future research. Psychooncology. 2013;22(11):2399e2407. http://dx.doi.org/10.1002/pon.3311. 20. Ferrell BR, Baird P. Deriving meaning and faith in caregiving. Semin Oncol Nurs. 2012;28(4):256e261. http://dx.doi.org/10.1016/j.soncn.2012.09.008. 21. Carlisle C. The search for meaning in HIV and AIDS: the carers’ experience. Qual Health Res. 2000;10(6):750e765. http://dx.doi.org/10.1177/10497320012911 8804. 22. Greenwood N, Mackenzie A, Cloud GC, Wilson N. Informal primary carers of stroke survivors living at home-challenges, satisfactions and coping: a systematic review of qualitative studies. Disabil Rehabil. 2009;31(5):337e351. http://dx.doi.org/10.1080/09638280802051721. 23. Greenwood N, Mackenzie A. Informal caring for stroke survivors: metaethnographic review of qualitative literature. Maturitas. 2010;66(3):268e276. http://dx.doi.org/10.1016/j.maturitas.2010.03.017. 24. Mays N, Pope C. Assessing quality in qualitative research. Br Med J. 2000 Jan 1;320(7226):50. 25. Bäckström B, Sundin K. The meaning of being a middle-aged close relative of a person who has suffered a stroke, 1 month after discharge from a rehabilitation clinic. Nurs Inq. 2007;14(3):243e254. http://dx.doi.org/10.1111/j.1440-1800. 2007.00373.x. 26. Wallengren C, Friberg F, Segesten K. Like a shadowdon becoming a stroke victim’s relative. Scand J Caring Sci. 2008 Mar 1;22(1):48e55. 27. Wallengren C, Segesten K, Friberg F. Struggling for freedomdlived experiences of being a relative of a stroke survivor in the first six months after hospital discharge. Int J Qual Stud Health Well-being. 2008;3(4):230e238. http:// dx.doi.org/10.1080/17482620802166278. 28. Bäckström B, Asplund K, Sundin K. The meaning of middle-aged female spouses’ lived experience of the relationship with a partner who has suffered a stroke, during the first year postdischarge. Nurs Inq. 2010;17(3):257e268. http://dx.doi.org/10.1111/j.1440-1800.2010.00490.x. 29. Kitzmüller G, Häggström T, Asplund K, Gilje FL. The existential meaning of couples’ long-term experience of living with stroke. Illn Cris Loss. 2012;20(4): 339e362. http://dx.doi.org/10.2190/IL.20.4.c. 30. Ring N, Ritchie K, Mandava L, Jepson R. A Guide to Synthesising Qualitative Research for Researchers Undertaking Health Technology Assessments and Systematic Reviews. Available at: http://citeseerx.ist.psu.edu/viewdoc/download? doi¼10.1.1.470.3693&rep¼rep1&type¼pdf; 2011. 31. Thomas J, Harden A, Oakley A, et al. Integrating qualitative research with trials in systematic reviews. Br Med J. 2004;328(7446):1010e1012. http://dx.doi.org/ 10.1136/bmj.328.7446.1010. 32. Lindseth A, Norberg A. A phenomenological hermeneutical method for researching lived experience. Scand J Caring Sci. 2004 Jun 1;18(2): 145e153. 33. Noonan AE, Tennstedt SL. Meaning in caregiving and its contribution to caregiver well-being. Gerontologist. 1997;37(6):785e794. 34. McLennon SM, Habermann B, Rice M. Finding meaning as a mediator of burden on the health of caregivers of spouses with dementia. Aging Ment Health. 2011;15(4):522e530. http://dx.doi.org/10.1080/13607863.2010.543656. 35. Giuliano AI, Mitchell RE, Clark PG, Harlow LL, Rosenbloom D. The meaning in caregiving scale: factorial and conceptual dimensions. In: Poster Session

36.

37.

38. 39.

40.

41.

42.

43.

44. 45.

46.

47. 48.

49.

50. 51.

52.

9

Presented at the Second Annual Convention of the American Psychological Society, Dallas, Texas; 1990. Reid CE, Moss S, Hyman G. Caregiver reciprocity: the effect of reciprocity, carer self-esteem and motivation on the experience of caregiver burden. Aust J Psychol. 2005;57(3):186e196. http://dx.doi.org/10.1080/00049530500141022. Pharr JR, Dodge Francis C, Terry C, Clark MC. Culture, caregiving, and health: exploring the influence of culture on family caregiver experiences. ISRN Public Health. 2014;2014:1e8. http://dx.doi.org/10.1155/2014/689826. Lai DW. Filial piety, caregiving appraisal, and caregiving burden. Res Aging. 2010;32(2):200e223. Han M. Exploring caregiving-related distress among family caregivers of a person with mental illness and the role of culture among Chinese, Vietnamese and Caucasians. In: Society for Social Work and Research 19th Annual Conference: The Social and Behavioral Importance of Increased Longevity. New Orleans: SSWR; 2015. Canda ER. Filial piety and care for elders: a contested Confucian virtue reexamined. J Ethn Cult Divers Soc Work. 2013;22(3e4):213e234. http://dx.doi.org/ 10.1080/15313204.2013.843134. Chan CLW, Ho AHY, Leung PPY, et al. The blessings and the curses of filial piety on dignity at the end of life: lived experience of Hong Kong Chinese adult children caregivers. J Ethn Cult Divers Soc Work. 2012;21(4):277e296. http:// dx.doi.org/10.1080/15313204.2012.729177. Kim YJ, Seo SY. The Effect of Cultural Justification and Filial Piety of Married Children on Their Caregiving Behavior. Available at: http://onlinepresent.org/ proceedings/vol119_2015/13.pdf. Mackenzie A, Greenwood N. Positive experiences of caregiving in stroke: a systematic review. Disabil Rehabil. 2012;34(17):1413e1422. http://dx.doi.org/ 10.3109/09638288.2011.650307. Hunt CK. Concepts in caregiver research. J Nurs Scholarsh. 2003;35(1):27e32. http://dx.doi.org/10.1111/j.1547-5069.2003.00027.x. Rodgers BL, Cowles KV. A conceptual foundation for human suffering in nursing care and research. J Adv Nurs. 1997;25(5):1048e1053. http:// dx.doi.org/10.1046/j.1365-2648.1997.19970251048.x. Kang K-A, Im J-I, Kim H-S, Kim S-J, Song M-K, Sim S. The effect of logotherapy on the suffering, finding meaning, and spiritual well-being of adolescents with terminal Cancer. J Korean Acad Child Heal Nurs. 2009;15(2):136. http:// dx.doi.org/10.4094/jkachn.2009.15.2.136. Folkman S, Moskowitz JT. Positive affect and the other side of coping. Am Psychol. 2000;55(6):647. Duggleby W, Williams A, Wright K, Bollinger S. Renewing everyday hope: the hope experience of family caregivers of persons with dementia. Issues Ment Health Nurs. 2009;30(8):514e521. http://dx.doi.org/10.1080/01612840802641727. Park CL. Making sense of the meaning literature: an integrative review of meaning making and its effects on adjustment to stressful life events. Psychol Bull. 2010;136(2):257e301. http://dx.doi.org/10.1037/a0018301. Frankl VE. The Will to Meaning: Foundations and Applications of Logotherapy. New York: Penguin; 2014. Rehnsfeldt A, Eriksson K. The progression of suffering implies alleviated suffering. Scand J Caring Sci. 2004;18(3):264e272. http://dx.doi.org/10.1111/ j.1471-6712.2004.00281.x. Sandelowski M, Julie B. Handbook for Synthesizing Qualitative Research. New York: Springer Publishing Company; 2006.