Abstract
Early care seeking is important for prognosis of malignant melanoma. Coping styles in decision-making to seek care can relate to prognosis since avoidant strategies could delay care seeking. The aim of this study was to compare self-reported coping styles in decision-making between men and women diagnosed with malignant melanoma. We used the Swedish version of the Melbourne Decision-Making Questionnaire to assess coping styles. Men generally scored higher in buck-passing while women and those living without a partner scored higher in hypervigilance. This knowledge could be used in the development of preventive programmes with intention to reach those who delay care seeking.
Introduction
Malignant melanoma (MM) is an aggressive cancer that is rapidly increasing over the world, as well as in Sweden. Sweden is one of the 10 countries with the highest incidence of MM (WHO International Agency for Research of Cancer, 2010). The survival is correlated with time of seeking care and melanoma thickness (Giblin and Thomas, 2007) and explains why early detection, care seeking, and diagnosis lead to better prognosis. However, there is evidence that many people delay care seeking, despite their discovery of a suspect mark.
Several factors that increase the risk for MM, such as the phenotype with fair skin, red or blond hair and freckled skin, are relevant to the Swedish population and might contribute to the high incidence of MM in Sweden. Other reasons related to the high incidence of MM could be the high socio-economic status in general, that is, relatively high education and income correlated with vacation travels (Sussmann and Rashcovsky, 1997), particularly to countries with a climate warmer and more sunny than Sweden. A suntan is, in the Swedish culture, correlated with a fresh and healthy look, and thereby desirable. The positive experiences of being in the sun and having a suntan seem to outweigh concern for the possible risk for melanoma, frequently highlighted in media (Bränström et al., 2010). The combination of intermittent and long sun exposure, and the specific phenotype, increases the risk for melanoma (Gandini et al., 2011).
Many preventive interventions have focused on increasing knowledge about melanoma, but their effects, compared to the positive experience of being in sun, appear to be brief (Bränström, 2003). Screening programmes more often attract young people with lower risk for melanoma, while older people with higher risks do not attend such programmes (De Haas et al., 2010). Swedish peoples’ knowledge about melanoma and the risk related to intensive sun exposure are quite high, but do not lead to a reduction of sun exposure and decreased incidence of melanoma (Bränström, 2003; Bränström et al., 2004). Consequently, current campaigns seem insufficient (De Haas et al., 2010), and knowledge and increased awareness do not reduce melanoma-prone behaviour.
Delay of care seeking or participation in screening seems to depend on peoples’ decision-making processes. Decision-making to seek care is a complex process that takes time, especially if people neither experience skin change as threatening nor understand that it could be MM (Hajdarevic et al., 2010). Effective coping strategies are important for the perception and interpretation of a threatening situation and the self-management to reach stability and control in life (Folkman and Moskowitz, 2004). From the studies of decision-making to seek care for suspect marks (Hajdarevic et al., 2010, 2011), different patterns of reactions between men and women were found and the context, that is, personal, social and health-care-related factors, influenced the stress people experience in such situations. Furthermore, adaptive coping strategies, that is, the management of thoughts and emotions about the suspect marks and care seeking, were important for their decision to seek care (Hajdarevic et al., 2010, 2011). Experience of disturbances from various types of MM – such as in situ, an early stage of MM; superficial spreading melanoma (SSM), developing over a long time and more often superficially spreading; and nodular melanoma (NM), rapidly developing with vertical growth – influences detection (McPherson et al., 2006) and could influence the decision-making to seek care.
Decision-making starts with a challenge, which could be an event or communication conveying threats or opportunities (Janis, 1984). The perceived level of stress influences the information processing and further use of the different coping strategies in the decision-making process (Janis and Mann, 1977). Coping patterns are based on three conditions: absence or presence of awareness of serious risks for whichever alternative is chosen, hope of finding a better alternative and a belief that there is adequate time to search and deliberate before taking a decision (Janis and Mann, 1997. p. 335). The way to handle the stress situation affects the quality of decision. One adaptive coping strategy is vigilance, involving a search for and rumination over cues relevant to the threat, and occurring only when all three conditions are met. Avoidance and hypervigilance are considered as less adaptive coping strategies and more often result in defective decisions (Janis, 1984; Janis and Mann, 1977). Avoidance is characterized by denial or suppression of relevant information by escaping from the decisional conflicts. Avoidance includes strategies such as procrastination, avoiding thinking about and discussing the issue and staying away from possible pressure, and buck-passing, evading or thinking of the conflict issue using selective attention and distorted information processing, or shifting responsibility. Panic or a very high level of stress and hastily choosing a solution characterizes hypervigilance. During such stress, people escape the worst danger, but overlook other serious consequences and drastic penalties (Janis, 1984; Janis and Mann, 1977). There is literature that suggest planned coping that not only implies when, where and how to perform a target behaviour, but also implies a contemplation of the when, where and how to imagine barriers in order to generate coping strategies (Craciun et al., (2012).
Ways of dealing with a situation and the use of different coping styles in decision-making for seeking care are not highlighted in the research area of delay for care seeking with MM.
There are still too many people who delay care seeking despite the discovery of a mark, particularly men, those living alone, those with lower educational level, and middle-aged and older people (Baumert et al., 2007). Delay is common and results in worse prognosis and high mortality. A qualitative study (Hajdarevic et al., 2011) showed that men were relying on their wives’ and relatives’ knowledge about MM and needed support in decision-making to seek care, while women struggled with emotions such as worry and anxiety, but decided upon care seeking by themselves. There are indications in the literature that stress and the way of dealing with a situation (i.e. coping styles) influence the care-seeking pattern (Brandberg et al., 1996; Folkman and Moskowitz, 2004; Kirana et al., 2009; Leventhal et al., 2008; Ruiter et al., 2008) for MM. Therefore, the aim of this study was to compare self-reported decision-making coping styles between men and women in various ages, who live with or without a partner and who were diagnosed with various stages of MM.
Method
Participants
People from the northern region of Sweden (n = 437), 18–80 years old and diagnosed with MM between 1 January 2008 and 31 December 2010, were invited to participate in this study by filling in the Swedish version of the Melbourne Decision-Making Questionnaire (MDMQ) (Mann et al., 1997). Participants were identified through the National Quality Register for Melanoma of Skin in the northern region including the four most northern county councils of Sweden. The response rate was 273 questionnaires of which three patients were excluded due to excess of missing data. Characteristics of the participants are given in Table 1.
Participants and their characteristics.
SD: standard deviation; MM: malignant melanoma; NM: nodular melanoma.
Missing data for one person.
Instrument
The Swedish version of the MDMQ (Mann et al., 1997) was, after translation and psychometric testing, used to assess the participants’ coping styles. The MDMQ is a questionnaire developed by Mann et al. (1997) and consists of two parts, where the first part includes six items concerning decision-making self-esteem-measuring personal competence as a decision maker. The next part includes 22 items concerning different coping styles measured in four subscales: vigilance, six items relating to different steps in sound decision-making; hypervigilance, five items relating to decision-making under pressure; and two subscales with six and five items, respectively, measuring aspects of defensive avoidance, buck-passing and procrastination. The items are answered on a three-point Likert scale (2 = ‘True for me’; 1 = ‘Sometimes true’ and 0 = ‘Not true for me’).
The questionnaire has been tested for reliability in many countries with a Cronbach’s alpha for subscales, as follows: self-esteem = 0.65–0.74, vigilance = 0.65–0.80, hypervigilance = 0.61–0.74, buck-passing = 0.77–0.87 and procrastination = 0.70–0.81 (Bouckenooghe et al., 2007; De Heredia et al., 2004; Deniz, 2006; Mann et al., 1997, 1998; Sari, 2008). Cronbach’s alpha for this Swedish sample was as follows: self-esteem = 0.70, vigilance = 0.72, hypervigilance = 0.63, buck-passing = 0.72 and procrastination = 0.75.
Supplementary questions of a socio-economic nature, such as age, sex and living conditions, were added to the questionnaire. In the instructions for filling in the questionnaire, the participants were asked to recall and reflect on how they felt and thought when they decided about seeking care for their melanoma. We also obtained data from the National Quality Register for Melanoma of Skin of the northern Swedish region about tumour type (in situ, SSM; NM) and tumour thickness (Breslow, 1970; Clark et al., 1969).
Procedure
The questionnaire and information with a request for participation, together with prepaid postage, were sent to 437 participants. Before sending reminders, we updated information from the National Quality Register for Melanoma of Skin of the northern Swedish region about deceased persons, in accordance with the Population Register. One person had deceased, and one had moved to an unknown location. Seventy-eight people did not answer, despite reminders, and 84 declined participation. After two reminders with a 3-week interval, 273 (62%) participants had accepted participation and filled in the questionnaire. Three questionnaires were excluded, because they had too much missing data. Among the remaining 270 cases, we imputed individual mean values for missing data in one to two questions for nine cases.
Statistics
Descriptive statistics were used to describe the characteristics of the population. Correlations between self-esteem and coping styles were calculated using Person’s coefficient. To explore group differences, t-test, Chi-square test (χ2) and one-way analysis of variance (ANOVA) with the Bonferroni post hoc test were used. For all analyses, the Statistical Package for the Social Sciences (SPSS, version 18.0, Chicago, IL, USA) was used. Internal missing values were accepted up to 10 per cent and were replaced with mean values calculated on individual’s subscale levels, which has proved to be an appropriate method (Shrive et al., 2006).
Ethics
This study obtained approval from the Ethics Review Board in Northern Sweden (Dnr 2011-88-32). Before sending the questionnaire and reminders, we updated information from the National Quality Register for Melanoma of Skin of the northern Swedish region about deceased persons, in accordance with the Population Register, with the intention to spare the relatives.
Results
The results showed a nearly equal proportion of women and men responding to the questionnaire. Men had thicker tumours, were older and more often lived with a partner than women did (Table 1).
Our findings from the analysis of Part I of the questionnaire regarding decision-making self-esteem showed that while it was positively correlated with a vigilant coping style, it was also negatively correlated with buck-passing, procrastination and hypervigilance. However, we did not find any significant differences in self-esteem between men and women, age groups, living conditions, tumour types or tumour thickness. When analysing Part II of the questionnaire regarding different coping styles, we found no significant relation between tumour thickness and coping styles, even when NM as the most aggressive melanoma type was excluded. However, the results showed significant differences in coping styles between men and women, where men scored higher in buck-passing, while women scored higher in hypervigilance. Men had thicker tumours than the women, particularly MM thicker than 0.7 mm. We also found that those living without a partner scored higher in hypervigilance than those living with a partner (Table 2).
Tumour thickness, age and coping styles among people with MM.
MM: malignant melanoma; MDMQ: Melbourne Decision-Making Questionnaire; SD: standard deviation.
When looking at ages as defined by quartiles, we found significant differences in coping styles among older people, where people older than 72 years scored higher in both vigilance (p = .013) and hypervigilance (p = .010) than the younger population. We did not find any difference in tumour thickness between people older than 72 years and those younger. People with NM were older (65.6 vs 58.6, p = 0.015) than those with in situ type, but not than those with SSM.
A post hoc test was used to identify differences in the use of coping styles between people with different tumour types. Participants with NM used more vigilant coping styles than those diagnosed as in situ (10.38 vs 9.42, p = .046). No significant differences were found between the NM and SSM groups in vigilant coping or in use of other coping styles.
Discussion
The aim of this study was to compare self-reported decision-making coping styles between men and women in various ages living with or without partner and diagnosed with MM in various stages. We did not find any relation between decision-making self-esteem and personal characteristics; however, there was a positive correlation between self-esteem and vigilance that is in concordance with the conflict theory model and several studies using the MDMQ scale (Deniz, 2006; Janis and Mann, 1977; Kocak and Özbek, 2010; Mann et al., 1998). Furthermore, we did not find any significant relation between thicker tumours and less adaptive, avoidant coping styles. On the contrary, we found that those who had NM – a rapid-growing form of MM and thereby the thickest tumour – scored highest on vigilance compared with people with other types of MM. NM is a common but specific type of MM with more aggressive, vertical and rapid growth than SSM (Cummins et al., 2006). Although the tumour thickness is an important prognostic factor measured by Breslow’s scale, it does not take into account the specific characteristics of various melanoma types, such as rapidly growing NM (Demierre et al., 2005). NM has been identified as the most significant predictor for higher tumour thickness, and therefore, thickness might not always be attributable to delay (Baade et al., 2006). In this study, we did not find any significant relations between thickness and coping styles, even when we excluded those with NM. According to Baumert et al. (2007), males and people living alone more often have thicker melanoma, something we have interpreted as being related to less adaptive coping strategies such as avoidance and hypervigilance.
Our result showed that men scored higher in buck-passing while women scored higher on hypervigilance. This is in concordance with Bouckenooghe et al. (2007), who also found that women scored higher in hypervigilance. Hypervigilance is strongly related to awareness (Janis and Mann, 1977) and can be labelled as hyperawareness, but does not always lead to an appropriate decision. Bergenmar et al. (1997) found that women had a higher level of perceived susceptibility and a higher level of knowledge about melanoma. This could be a possible explanation of women’s higher awareness of MM and greater extent of self-detected melanoma spots (Carli et al., 2004; Youl et al., 2006). The fact that women in this study had thinner MM and were diagnosed as in situ more often than men also contributes to the interpretation that women’s higher awareness leads to greater self-detection, which is in line with the results of earlier studies (Hajdarevic et al., 2011). Besides gender and coping strategies, personality is often mentioned as a potential determinant of preferences for decision-making and may also be influenced by gender. Flynn and Smith (2007) reporting a large population-based cohort study found that increased conscientiousness and openness to experience and decreased agreeableness and neuroticism corresponded to an active decision-making style.
Bouckenooghe et al. (2007) also found that younger people and those who had higher decisiveness and lower need to maintain control over the decision-making scored higher on buck-passing. From the current studies, we know that greater levels of avoidance decrease people’s use of emotional support but also increase self-blame and psychological distress (Donovan-Kicken and Caughlin, 2011). These results might also be gender influenced. Gender may influence the assessment of symptoms’ severity (Addis and Mahalik, 2003; Hajdarevic et al., 2011), which can reflect men’s reluctance to act urgently using buck-passing and representing the strength of masculinity (Hunt et al., 2010). Tamres et al. (2002) found that problem-focused coping was more effective for men than women. Differences in awareness and gender role can therefore influence coping. Previous research has showed that a male gender role is related to lower level of rumination (Wupperman and Neumann, 2006). However, less adaptive strategies can in some situations be interpreted as adaptive (Janis and Mann, 1977). Despite hypervigilance being a panicky and less adaptive strategy, in this case, it seems to be a sound strategy, since women in this study had thinner tumours, and it is reasonable to believe that they also had sought care earlier.
Since the people with thicker tumours were older, their awareness might be influenced by functional impairment and/or multimorbidity, a reason that melanomas were thicker among participants in our study. However, the older participants also scored higher on vigilance, something that can be explained as a problem-solving coping strategy adapted to increased need of awareness due to vulnerability and multimorbidity. Older people more routinely visit doctors (McPherson et al., 2006), which might explain why they may be more aware of health problems and act in an adaptive way.
We found that living without a partner, as a contextual variable, was significantly related to a hypervigilant coping style. Those living without a partner also had thicker tumours, which is in agreement with earlier research (Baumert et al., 2007). One explanation may be difficulties in detecting skin changes by oneself, if they appear on the back of the body. This is in concordance with our previous interview studies, where low social support among men was described as leading to delay in care seeking. One study about perceptions of social support in couples where one had been diagnosed with MM reported higher cognitive and affective empathy but also stress among partners than among patients, which may explain these findings (Lichtenthal et al., 2003). Reminders to seek care influenced men positively. Among women, social support in decision-making was not described as necessary, but social responsibility often burdened women, leading to delay (Hajdarevic et al., 2010, 2011).
In this study, women were younger than men when diagnosed, which is consistent with the previous research (Cho and Chiang, 2010; Joosse et al., 2010). There are various existing theories explaining this condition. One explanation is that it depends on women’s better skills to detect tumours by themselves; another concerns biological aspects of different developments of melanoma among men and women (Cho and Chiang, 2010; Spatz et al., 2010). The incidence of thick MM, particularly NM among men, is well documented (Geller et al., 2009; Spatz et al., 2010). Other studies have showed that women have more preferable prognoses (Joosse et al., 2010). Facts such as different behaviours to ultra violet (UV) exposure (Gandini et al., 2011, 2010) and location of tumour might partly explain the greater tumour thickness (McPherson et al., 2006), as well as tumour location and age among men. However, these facts are not sufficient to conclude that these reasons are crucial to tumour development. Since we did not have access to data about location, we could not use this variable in our analysis, but it would be of interest for future research.
The results showed that men generally had thicker tumours than women when all types were included. Furthermore, men more often suffered from NM. People with NM scored higher in vigilance than other groups. Reasons such as rapid growth, easier and earlier detection, stronger perceived severity of symptoms and perceived threat might explain why people with NM are more likely to use a vigilant coping style. While SSMs often exist over a period, NMs more often appear as new lesions and also are known to be red or pink and lumpy/raised, rapidly growing (Cummins et al., 2006), and likely to demonstrate visible change after first recognition (Chamberlain et al., 2003). Symptoms such as bleeding, crusting and/or weeping are more common in NM than in SSM (Geller et al., 2009), which probably influences the experience and perception of a suspect mark (McPherson et al., 2006). Research about psychological factors influencing health behaviour has pointed out that severity, timeline of symptom development and the perceived symptoms and consequences are important for change in health behaviour and delay of care seeking (Leventhal et al., 2008). In order to influence melanoma survivors to change behaviour for future, social support is reported important but also control over illness course and perceived life meaning (Park et al., 2008).
Methodological discussion
This study is a cross-sectional study with a retrospective approach that is useful, but also has limitations in difficulties to clarify the exposure and the factors influencing the outcomes. One aspect is the lack of information about the actual delayed time that deprives us of the possibility of linking this with coping strategies and responding to the relationship between coping styles and the exact delay.
The sample of the study presented only people from the Swedish northern region. However, the sample represents almost all people diagnosed with MM during this time period. The response rate might seem low; however, the dropouts did not differ in sex, age or tumour type and thickness from those remaining. A weakness in the design of this study is that we did not have any information on the past history of participants, their family history of melanoma or if they had any history of psychiatric/psychological complications. Psychological disturbances such as depression and anxiety may influence people’s coping styles. Since this might have influenced our result, further studies with this in mind is of importance.
Another limitation is using the Melbourne Decision-Making Questionnaire - Swedish version (MDMQ-S) to identify coping strategies as an important part of decision-making to seek care, since the questionnaire had not been used in Sweden earlier. However, the Swedish version of the instrument has been thoroughly translated and tested for Swedish conditions (article in preparation). It can be seen as a weakness that the data were based on self-report, that is, the respondents were not interviewed. However, as we see it, this can be seen as strength since it can be difficult for respondents to answer difficult questions face-to-face.
Since MM is more common among people over 60 years of age, there might be a greater risk for multimorbidity among participants that could obstruct both participation and response to the questionnaire. Using age boundaries in the inclusion criteria, we tried to limit the risk for bias in questionnaire response caused by different diseases such as cognitive impairment. However, most of the participants answered the questionnaire during the first dispatch. Another limitation involves recall bias. Their answers could be based on what they knew and thought at the decision-making time, as well as on what they recall now. However, according to Kessler and Wethington (1991), severe events in life can be recalled with adequate reliability over a period. Furthermore, this is a limitation common in epidemiological studies.
Conclusion
Coping styles were not related to tumour thickness in this study. Different coping styles were related to gender, living conditions, age and tumour type. Women and people living without a partner scored higher on hypervigilance while men scored higher in buck-passing. This variation indicates different individual needs of support and prompting for care seeking when people suspect serious illness such as MM.
Implication for clinical practice
Behavioural aspects such as effective coping should have more space in planning of preventive programmes. Besides our research, other theories closely related to coping strategies, such as theories about our personalities’ impact on our decision-making to seek care, could be relevant to integrate in preventive programmes and researches. However, knowledge about peoples’ varying coping styles could help us to refine existing preventive programmes with the intention to reach people who usually do not attend screening programmes. Men – who more commonly are buck-passing – should be encouraged and supported to seek care for suspicious skin changes and women – who more commonly are hypervigilant – should be taken seriously when seeking care. Further research should focus on the perception of severity of symptoms and the perceived threat, and their integral influence on coping and decision-making to seek care.
Footnotes
Acknowledgements
We gratefully acknowledge the County Council of Västerbotten, the Edvard Welanders and Finsen Foundation, the Cancer Research Foundation in Northern Sweden, the Department of Nursing at Umeå University and Faculty of Medicine, Umeå University and the Strategic Research Programme in Care Sciences, Umeå University. The authors would especially like to thank the participants for their contribution to the study and Katarina Örnkloo and Björn Tavelin from Regionalt Cancercentrum Norr for help with data collection. S.H., Å.H., U.I., E.S. and M.S.-E. contributed to study design and article preparation; S.H. contributed to data collection; S.H., U.I. and Å.H. contributed to analysis.
Funding
This study was funded by the County Council of Västerbotten, the Edvard Welanders and Finsen Foundation, the Cancer Research Foundation in Northern Sweden, the Department of Nursing at Umeå University and Faculty of Medicine, Umeå University and the Strategic Research Programme in Care Sciences, Umeå University.