Abstract
Growing evidences highlight the co-existence of negative and positive (e.g. posttraumatic growth) identity changes following stroke. Identity changes were assessed by comparing 42 survivors 21 months after stroke and healthy controls. A total of 26 stroke survivors participated in a semi-structured interview. Stroke survivors showed significantly higher posttraumatic growth (F(1, 75) = 9.79, p = .003) and integrated the critical life event to a higher extent into their identity (event centrality) (F(1, 74) = 37.54, p < .001). Qualitative analysis revealed increased appreciation of life and more intense/selective relationships as the most common positive changes. Considering positive changes might provide additional perspectives for rehabilitation.
Introduction
A stroke imposes sudden and possible permanent loss of cognitive, emotional, physical and social functioning. Therefore, it challenges fundamental schemata about the world (Field et al., 2008) and the self (Ellis-Hill and Horn, 2000) and can result in the loss of a coherent personal identity (Coetzer, 2008). Despite negative changes, growing evidences highlight the (co-)existence of positive identity changes, for example, higher appreciation of life or changes in priorities following a stroke (Gangstad et al., 2009; Gillen, 2005). Holistic rehabilitation programmes have been shown to be beneficial in promoting a (re-)definition of a post-injury identity (Coetzer, 2008) and to support adjustment to acquired brain injury (Doering and Exner, 2011). Progress in understanding positive changes might provide additional perspectives for rehabilitation programmes (McGrath, 2004) as it might support a (re-)definition of identity.
Positive changes following adverse life events often are referred to as posttraumatic growth (PTG) which is defined as the perception of positive psychological change due to struggling with highly stressful life events (Calhoun and Tedeschi, 2004). PTG describes a positive identity change which reaches beyond recovery (Sumalla et al., 2009) and which involves the redefinition of shattered personal schemata (Janoff-Bulman, 1992). It has been shown to positively impact mental and physical health (Affleck et al., 1987; Helgeson et al., 2006). Incorporating the life event into the own identity is seen as a core component of PTG redefinition process (Tedeschi and Calhoun, 2004). The concept of event centrality describes the extent to which an event becomes a central part of the person’s identity (Berntsen and Rubin, 2006). It has been shown to be linked to enhanced PTG, increased depression and symptoms of posttraumatic stress (Boals and Schuettler, 2011; Groleau et al., 2013).
Studies examining positive changes or PTG following stroke are rare. Qualitative research results of Gillen (2005) revealed positive changes, for example, increased social relationships and personal growth following a stroke. A quantitative study conducted by Gangstad et al. (2009) reported PTG after stroke.
According to the Meaning Maintenance Model (Heine et al., 2006), all humans are innately motivated to reorganize their meaning system and therefore parts of their identity, if threat to existing schemata occurs. This threat can also result from stressful life events within the normal range of human experience (Proulx and Heine, 2006). However, only very few studies comparing PTG following severe illness to those experienced by healthy controls (HCs) exist which yield inconsistent results (Andrykowski et al., 1993; Tomich et al., 2005). No study has been published comparing PTG reported by stroke survivors against changes experienced by HCs.
This study had the following objectives: (a) Exploring the characteristics of negative and positive changes following a stroke by using standardized questionnaires and a semi-structured interview. (b) Comparing identity changes (PTG, event centrality) of stroke survivors to those endorsed by age-, education- and sex-matched HCs. It was hypothesized that stroke survivors endorse significant higher PTG and event centrality. (c) Exploring relationships between PTG, event centrality and measures of mental health. (d) Comparing positive changes following a stroke derived by qualitative and quantitative methods.
Method
Participants and procedure
This study received ethical approval from the Ethics Committee of the German Psychological Society (DGPs) and from the local Research Ethics Committee. Participation was voluntary. HCs did not receive monetary recompensation. Stroke survivors received remuneration for completing questionnaires at follow-up measurement of a longitudinal study (Kuenemund et al., 2013).
Stroke survivors
Data of the stroke survivors were collected within a longitudinal study. At baseline, 84 stroke survivors were recruited in acute rehabilitation facilities. They were screened for inclusion and exclusion criteria by a neuropsychologist after giving consent for participation. Inclusion criteria were adult age (≥18 years), a diagnosis of a vascular brain injury, native German speaker, adequate self-awareness and receptive and expressive language function adequate to complete self-report questionnaires. Exclusion criteria encompassed progressive neurodegenerative diseases (e.g. multiple sclerosis), history of severe psychiatric disorders (e.g. psychosis) and history of substance abuse.
For the purpose of the present cross-sectional study, measures of the follow-up data acquisition were used. Stroke survivors were re-contacted via telephone. Detailed study information was given to them. Written consent was obtained. Participants completed questionnaires independently in written form and sent questionnaires to the investigators. A total of 42 stroke survivors took part at follow-up measurement; 11 participants refused consent; 30 participants were not available by phone, mail and letter; and 1 participant had died. Time since stroke ranged from 15 to 65 months (M = 21.60 months, standard deviation (SD) = 7.87 months).
HCs
HCs were recruited through snowball sampling. Inclusion criteria encompassed adult age (≥18 years), native German speaker, no history of severe physical illness (e.g. stroke, cancer), no history of severe psychiatric disorders (e.g. psychosis) and no history of substance abuse.
HCs were asked to name a salient, highly stressful life event that happened within the last 2 years. Time since the event ranged from 1 to 25 months (M = 14.67 months, SD = 7.62 months). Sociodemographic statistics of the samples are shown in Table 1.
Descriptive statistics of the total stroke sample and the HC sample.
HC: healthy control; M: mean score; SD: standard deviation.
Group differences were analysed using χ2 tests, analysis of variance and Mann–Whitney U test as appropriate; degrees of freedom in parentheses.
p: two-tailed level of significance, significant values are indicated in bold.
Quantitative data
Functional status
For the assessment of functional status of stroke survivors, the Aachen Daily-Functioning Item-Bank Questionnaire (ADFIQ) was used (Böcker et al., 2009). It assesses daily functioning in three domains: ‘Applied cognition’, ‘Mobility’, and ‘Personal care and Instrumental activities’ on a 4-point Likert scale. The outpatient version consists of 147 items. A ‘not applicable’ response category exists. Satisfactory reliability (person and item Rasch reliability indices >.86) and unidimensionality of the ADFIQ have been shown.
PTG
The Posttraumatic Growth Inventory (PTGI) (German Version by Maercker and Langner, 2001) consists of 21 items measuring five subscales of PTG: Appreciation of Life, Relating to Others, New Possibilities, Personal Strength and Spiritual Change. Stroke survivors were asked to identify the degree of positive changes due to struggling with the stroke on a 6-point Likert scale. HCs referred to their stressful life event. For stroke survivors and HCs, coefficient alphas were .93/.93 for the PTGI total score, .75/.76 for Appreciation of Life, .83/.85 for New Possibilities, .67/.78 for Personal Strength, .88/.83 for Relating to Others and .21/.95 for Spiritual Change.
Event centrality
The short version of the Centrality of Event Scale (Berntsen and Rubin, 2006) assesses the extent to which an event has become a key component of the identity and the life-story. Stroke survivors were asked to indicate their agreement to seven items on a 5-point Likert scale referring to the centrality of the stroke. HCs referred to their stressful life event.
To test the factor structure of the translated German version, separated principal component analyses with varimax rotation were conducted for both samples. Within the stroke sample, a single factor was found which explained 46.16 per cent of item variance. In the HC sample, a single factor explained 60.01 per cent of item variance. For stroke survivors and HCs, coefficient alphas were .80/.89.
Depressive symptoms
The German version of the Center for Epidemiological Studies Depression Scale (CES-D) in its abbreviated form (Hautzinger and Bailer, 1993) was applied. Participants were asked to rate 15 items on a 4-point Likert scale according to their prevalence within the last 7 days. For stroke survivors and HCs, coefficient alphas were .89/.89.
Satisfaction with life
The Satisfaction with Life Scale (SWLS) (Diener et al., 1985) was used. Participants were asked to rate their agreement to five items on a 7-point Likert scale. For stroke survivors and HCs, coefficient alphas were .86/.82.
Qualitative data
Semi-structured interview
A subsample of the reassessed stroke survivors (n = 26) gave written consent to participate in an interview assessing perceived changes due to the stroke. Mean age of the subsample was 52.15 years (SD = 11.42 years). Of them, 14 (54%) participants were male. Time since stroke diagnosis was on average 21.96 months (SD = 9.61 years). The following semi-structured interview schedule was used:
How did the experience of a stroke change your life?
Have you experienced any negative changes as a result of the stroke?
Have you experienced any positive changes as a result of the stroke?
How did the experience of the stroke change your view of yourself?
How did the experience of the stroke change your view of the world?
How did the experience of the stroke change your view of relationships?
The interview was conducted via telephone by a trained graduate student. Audiotaped interviews were transcripted. Based on the grounded theory method (Glaser and Strauss, 1967), a coding scheme was independently developed by the first and second authors (A.K. and S.Z.). Discrepancies were solved by discussion. The coding scheme originally included 19 categories which were not necessarily considered to be independent of each other (Smith, 2000). Subsequently, two independent coders categorized each transcript. Categories that were endorsed by less than 20 per cent of the sample were excluded, resulting in 13 final categories. Inter-rater reliability as assessed by Cohen’s kappa (Fleiss, 1981) was good ranging from κ = 0.586 to 0.846. Kappa was small for the category of Fighting Spirit (κ = 0.388). Additionally, the valence (positive/negative) of each category was rated (inter-rater agreement of 100%).
Data preparation and statistical analyses
Statistical analyses were carried out with SPSS 19.0. Due to small sample sizes, bootstrap procedures (Efron and Tibshirani, 1993) to estimate robust parameters were conducted. Chi-square measures were used to analyse differences between categorical variables. Mann–Whitney U test was used to compare groups in case of not normally distributed, continuous variables. Analyses of covariance (ANCOVAs) were used to test for group differences while controlling for confounding effects. A multivariate analysis of covariance (MANCOVA) was used to test for group differences in the PTGI subscales. Effect sizes (f) for group differences were calculated by using G-Power 3.2.1 (Erdfelder et al., 1996) with f = .10 representing a small, f = .25 a medium and f = .40 a large effect. To compare PTGI subscales within the stroke sample, a repeated-measures analysis of variance (ANOVA) was used. Post hoc pairwise comparisons were Bonferroni adjusted. Pearson’s correlations were used to assess relationships between normally distributed variables.
Results
Quantitative data analyses
Dropout analyses within the stroke sample
Dropout analyses indicated that participants reported a significant higher satisfaction with life (F(1, 82) = 5.37, p = .023) compared to non-participants. No other significant differences were observed (sex, age, education, time since stroke, depression: all ps > .05).
The interview subsample did not differ in terms of sociodemographic variables (sex, age and education), depression, satisfactions with life, PTG and event centrality from those not participating in the interview (all ps > .05). Results of the dropout analyses are displayed in Table 4 (Appendix 1).
Quantitative characteristics of positive changes within the stroke sample
Comparing the means of the PTGI subscales against each other revealed significant differences between the PTGI subscales (F(3.39, 139.10) = 26.61, p ≤ .001) within the stroke sample. Bonferroni-adjusted post hoc pairwise comparisons showed that the Appreciation of Life subscale obtained highest scores compared to all other subscales (Relating to Others: mean difference = 0.458, p = .025; New Possibilities: mean difference = 0.863, p ≤ .001; Personal Strength: mean difference = 1.09, p ≤ .001; Spiritual Change: mean difference = 1.39, p ≤ .001). The second most endorsed subscale was the Relating to Others subscale which differed significantly from the Personal Strength subscale (mean difference = 0.629, p = .002) and the Spiritual Change subscale (mean difference = 0.927, p ≤ .001). The subscale of New Possibilities differed significantly from the subscale of Spiritual Change (mean difference = 0.521, p = .028). No differences existed between the subscales of Personal Strength and Spiritual Change (p > .05). Means of the subscales are shown in Table 2.
Group differences in psychological variables.
M: mean score; SD: standard deviation; PTGI: Posttraumatic Growth Inventory; CES-D: Center for Epidemiological Studies Depression Scale; SWLS: Satisfaction with Life Scale.
Group differences were analysed using ANCOVAs considering time since the stroke/life event as covariate.
F value associated with ANCOVA, degrees of freedom in parentheses.
p: two-tailed level of significance, significant values are indicated in bold; f: effect size.
Total PTGI score.
Mean of each PTGI subscale.
Comparing identity changes of stroke survivors and HCs
As shown in Table 1, significant differences between stroke survivors and HCs emerged concerning time since the stroke/life event. This variable was considered as a covariate in analyses of group differences (ANCOVAs).
Before analysing group differences in identity changes, the nature of stressful life events named by HCs was explored. All HCs named a stressful life event. Stressful life events were coded into eight mutually exclusive categories by two independent raters: Own interpersonal conflicts (5/12%), other’s interpersonal conflicts (2/5%), own physical or mental disease (3/7%), other’s physical or mental disease (10/24%), bereavement (3/7%), financial and existential worries (6/14%), high workload (8/19%) and miscellaneous (5/12%). Inter-rater reliability was good to excellent, ranging from κ = 0.632 to 1.00.
As displayed in Table 2, stroke survivors showed significantly higher PTG compared to HCs. Significant differences were also found in PTGI subscales as revealed by MANCOVA (F(5, 71) = 4.04, p = .003). Univariate ANCOVAs showed significantly higher scores for stroke survivors in the PTGI subscales of Appreciation of Life, Relating to Others, New Possibilities and Spiritual Change.
Moreover, stroke survivors endorsed significantly stronger event centrality, higher depression scores and lower satisfactions with life compared to HCs.
Relationships between PTG, event centrality and mental health
Within the sample of stroke survivors, correlation analyses revealed no associations of PTG with the overall functional status (r = .208, p = .175). A significant positive association between PTG and event centrality was found in the stroke (r = .498, p ≤ .001) and HC (r = .669, p ≤ .001) sample. No associations between depression and PTG were found (Stroke: r = −.008, p > .05; HCs: r = .110, p > .05). Within the HC sample, a negative relationship between satisfaction with life and PTG existed (r = −.420, p ≤ .01), whereas no association between these variables was found within the stroke sample (r = .226, p = .161).
Qualitative data analysis
Exploration of the qualitative characteristics of negative and positive changes following stroke
All interview participants reported at least one persisting negative change. However, all interview participants additionally reported at least one positive change due to the stroke. Table 3 lists all derived categories and detailed sample responses. The category of increased awareness of limited life time was rated as neutral and is displayed in the second row of Table 3.
Codes, example responses and frequencies of the codes within the subsample of stroke survivors.
The category of increased awareness of limited life time was rated as neutral and is displayed in the second row of the table.
Discussion
Quantitative results revealed that stroke survivors showed significantly higher PTG compared to HCs. Previous research has found increased PTG in cancer survivors compared to HCs (Cordova et al., 2001; Tomich et al., 2005). However, these are the first results highlighting that stroke survivors report higher PTG when compared to HCs. Stroke survivors also showed significantly higher event centrality when compared to HCs. Both results show that stroke patients redefine their sense of self after injury and that this redefinition process exceeds redefinition within the normal human development. This is in line with the qualitative results obtained by Nochi (2000) and Muenchberger et al. (2008) who found that survivors following traumatic brain injuries seemed to ultimately revise their sense of self. The traumatic brain injury became a turning point in life-narratives.
Besides increased PTG, stroke survivors showed significantly higher depression scores and lower satisfaction with life compared to HCs. Similarly, prior research has shown both positive changes and reduced mental health following acquired brain injuries (Hawley and Joseph, 2008; Silva et al., 2011). Due to the co-existence of positive and negative changes, PTG seems to exceed mere coping with difficulties by denial (Collicutt McGrath and Linley, 2006).
The idea of PTG as a positive identity change as opposed to PTG as illusory coping process (Maercker and Zoellner, 2004) is further supported by high correlations between PTG and event centrality in this study. Similarly, Boals and Schuettler (2011) found a positive relationship between PTG and event centrality. Moreover, event centrality was the main predictor of PTG even after statistically controlling for cognitive processing of the trauma supporting the idea that PTG represents fundamental changes in identity. Due to the cross-sectional design of this study, no causal attributions can be drawn from results. As proposed by Nochi (2000), finding positive meaning may also serve to rebuild life and identity following acquired brain injury and may therefore contribute to a higher integration of the injury into identity.
Contrary to our hypothesis, PTG was not associated with mental health. These results contrast meta-analytic findings showing negative associations between PTG and depression (Helgeson et al., 2006). All in all, the results in both groups further support the idea that at this short time interval since the event, negative and positive changes seem to co-exist independently (Linley and Joseph, 2004).
Findings of the qualitative interview demonstrated that the majority of stroke survivors reported negative and positive changes due to the stroke which is in line with research results after acquired brain injuries (Collicutt McGrath and Linley, 2006). The most prominent negative changes were persisting physical impairments, limitations in daily life and restrictions in profession. These functional limitations have been well documented following a stroke (Ch’ng et al., 2008; Essue et al., 2012). One-third of stroke survivors reported having experienced the stroke as a sudden disruption of life. Loss of self was reported by more than 20 per cent of stroke survivors. Both results fit well into qualitative observations by Muenchberger et al. (2008) reporting profound disruptions of identity following acquired brain injury.
Besides these negative changes, all interviewed stroke survivors also reported at least one positive change. These positive changes partly correspond to the subscales of the PTGI. The PTGI subscales of New Possibilities and Spiritual Change could not be confirmed by reports of stroke survivors within this study. Additional positive changes not captured by the PTGI were found. Relationships to others were not exclusively perceived as having become closer but were reported to simultaneously having become more selective. Reports of delight and gratitude for surviving and an increased awareness of health issues were frequently found within the stroke sample. These perspectives might positively impact adjustment processes as they might result in changed health behaviour by challenging dysfunctional disease attributions (Stewart et al., 2014). The established categories of positive change highly resemble categories found by Gillen (2005).
All in all, qualitative reports fit well into quantitative characteristics of positive change within this study. Both qualitative and quantitative results independently confirmed increased appreciation of life to be most frequently endorsed by stroke survivors. Similarly, Collicutt McGrath and Linley (2006) and Silva et al. (2011) reported the PTGI subscale of appreciation of life to be significantly more endorsed compared to the other PTGI subscales after acquired brain injury. Relating to others was the second most frequently endorsed scale and named category. Relating to others and emotional support have been shown to foster adjustment to stroke and to improve physical health by supporting the recognition of stroke warning signs (Barger, 2012; Ch’ng et al., 2008).
This study has several limitations. First, sample size was small and therefore generalization of the results is limited. Only 50 per cent of the original stroke sample took part at follow-up. Dropout analyses indicated that the final sample showed significantly higher satisfaction with life at baseline. Results might be biased as stroke survivors showing higher satisfaction with life at baseline might also report higher PTG at follow-up. Furthermore, time since event was significantly shorter for HCs compared to survivors. This variable was considered as a covariate in analyses of group differences. Moreover, due to its cross-sectional design, no conclusions concerning causality can be drawn from correlation analyses. A further limitation is that the qualitative results might not be generalizable to other samples, as they were derived by inductive methodology. However, due to the similarity of categories obtained in other qualitative studies, the results are likely to represent common themes of perceived change in stroke survivors. Moreover, the overall good inter-rater reliability obtained in qualitative data analysis supports the objectivity of the qualitative data analysis.
Despite of these limitations, this study is an important step forward as it simultaneously investigated both negative and positive identity changes by applying a mixed-method approach. To our knowledge, this is the first study to investigate PTG by comparing stroke survivors against HCs. Therefore, this study provides some important hints for rehabilitation process. By prompting to think about possible benefits of struggling with the consequences of a stroke, survivors might be assisted to generate a broader perspective concerning the stroke and its related consequences (Knaevelsrud et al., 2010; Lelorain et al., 2012). Generating a perspective encompassing both negative and positive identity changes might also promote post-injury identity (re-)definition processes (McGrath, 2004; Nochi, 2000). Considering positive changes should be seen as a complementation of rehabilitation approaches of restitution and compensation of post-injury impairments (Myles, 2004).
Footnotes
Appendix 1
Dropout analyses.
| Variables | Quantitative data |
Qualitative data |
||||||||
|---|---|---|---|---|---|---|---|---|---|---|
| Total sample
a
(N = 84) |
Total sample
b
(N = 42) |
|||||||||
| Participants (n = 42) |
Dropout (n = 42) |
p
|
Participants (n = 26) |
Dropout (n = 16) |
p
|
|||||
|
n
|
% |
n
|
% |
n
|
% |
n
|
% |
|||
| Sex – male | 27 | 64.30 | 29 | 69.00 | .643 | 14 | 53.80 | 13 | 81.30 | .072 |
| M | SD | M | SD | M | SD | M | SD | |||
| Age (years) | 51.29 | 10.14 | 51.62 | 8.87 | .873 | 52.15 | 11.42 | 54.03 | 7.45 | .539 |
| Education (years) | 14.90 | 3.69 | 13.43 | 3.66 | .069 | 14.23 | 2.61 | 16.00 | 4.89 | .421 |
| Time since stroke (months) | 2.52 | 5.69 | 1.83 | 1.48 | .609 | 21.96 | 9.61 | 21.00 | 3.85 | .612 |
| CES-D | 10.48 | 8.62 | 11.93 | 7.87 | .422 | 13.61 | 7.14 | 12.07 | 8.59 | .554 |
| SWLS | 23.48 | 6.10 | 20.02 | 7.94 |
|
18.73 | 6.96 | 18.44 | 7.43 | .887 |
| PTGI | – | – | – | – | – | 59.80 | 16.89 | 56.00 | 22.57 | .795 |
| Event centrality | – | – | – | – | – | 26.43 | 4.20 | 27.31 | 6.34 | .347 |
M: mean score; SD: standard deviation; PTGI: Posttraumatic Growth Inventory; CES-D: Center for Epidemiological Studies Depression Scale; SWLS: Satisfaction with Life Scale.
Group differences were analysed using multivariate analysis of variance, χ2 tests and Mann–Whitney U test as appropriate.
p: two-tailed level of significance, significant values are indicated in bold.
Total sample at baseline assessment of the original longitudinal study.
Total sample at follow-up measurement.
Acknowledgements
The authors like to thank all staff members of the cooperating rehabilitation units (Bonn-Bad Godesberg, Seesen) for their support; Christina Rakel, Melanie Kugler and Anja Mahn for their work in data collection; and all stroke survivors and healthy controls (HCs) for their willingness to participate.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
