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Human Reproduction Vol.22, No.8 pp. 2309–2317, 2007 doi:10.

1093/humrep/dem115
Advance Access publication on June 19, 2007

The relationship between perceived stigma, disclosure


patterns, support and distress in new attendees at an
infertility clinic

P. Slade1,3, C. O’Neill1, A.J. Simpson1 and H. Lashen2


1
Clinical Psychology Unit, Department of Psychology, University of Sheffield, Western Bank, Sheffield S10 2UR, UK; 2Department
of Obstetrics and Gynaecology, Central Sheffield Hospitals University Trust, University of Sheffield, Jessop Wing, Tree Root Walk,
Sheffield S10 2SF, UK
3
Correspondence address. E-mail: p.slade@sheffield.ac.uk

BACKGROUND: A model suggesting that high perception of stigma is associated with reduced disclosure to others,

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leading to lower social support and higher distress in new attendees at an infertility clinic is tested. METHODS:
Questionnaires measuring stigmatization (Stigma consciousness questionnaire), disclosure of fertility difficulties
(Disclosure questionnaire), social support (Duke-UNC Functional Social Support Questionnaire) and fertility-
related [Fertility Problem Inventory (FPI)] and generic distress [Hospital Anxiety and Depression Scale (HADS)]
were completed by 87 women and 64 men. Data were analysed by gender comparisons, correlations and path analysis.
RESULTS: Women reported higher stigma and disclosure than men. For women, stigma and disclosure were unre-
lated but in men higher stigma was associated with lower disclosure. Perceptions of stigma were related to low social
support for both genders. Social support was negatively related to anxiety, depression and overall infertility distress
and showed greater predictive capacity than satisfaction with partner relationship. Testing the model showed that, for
men, stigma was linked to lower disclosure and support and higher fertility-related and generic distress. Disclosure
itself did not link to support. For women, greater disclosure linked only to higher generic distress. Stigma was directly
linked to fertility-related distress and to low perceived support which mediated a relationship with generic distress.
CONCLUSIONS: Stigma and the wider social context should be considered when supporting people with fertility pro-
blems. Greater disclosure may be associated with higher distress in women.

Keywords: disclosure; distress; infertility; stigma; support

Introduction the social domain increased for both men and women who
Infertility now affects a significant proportion of couples. Some had not achieved a pregnancy in 12 months of treatment.
studies suggest that this can be associated with elevated levels The general literature on coping suggests that individuals
of distress, particularly in women whether or not treatment is seek social support less in situations which threaten self-esteem
sought (Greil, 1997; Slade et al., 1997; King, 2003; McQuillian (Folkman et al., 1986). Infertility may threaten self-esteem due
et al., 2003) whereas others have emphasized the emotional to its potentially stigmatizing nature. A stigma is defined as a
normality of samples (Downey et al., 1989; Downey and negative sense of social difference from others, that is, so
McKinney, 1992). Psychosocial factors such as cognitive outside the socially defined norm, it is both deeply discrediting
appraisals, have been identified as influencing emotional and devalues the individual (Goffman, 1963). Desire for chil-
status and higher perceived social support is also associated dren is typically seen as the norm within societies (Rosenblatt
with greater global life quality for both men and women, and et al., 1973) and indeed may have a survival dimension. There-
lower emotional distress for women with fertility difficulties fore, childlessness in couples could be seen as a form of
(Connolly et al., 1992; Nachtigall et al., 1992; Abbey et al., ‘deviant behaviour’. If infertility is experienced as stigmatizing
1994). The role of social support as a buffer in the context of (Whitford and Gonzalez, 1995), this may isolate people from
stressors other than infertility is well documented (Taylor potential sources of support.
and Seeman, 1999). However, people experiencing infertility People who do not disclose their fertility difficulties to others
often report feelings of isolation (Imerson and McMurray, risk being assumed as voluntarily childless, itself identified as
1996). Indeed, Schmidt et al. (2005) reported that distress in stigmatizing (Lampman and Dowling, 1995). Whiteford and

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Slade et al.

Gonzalez (1995) found that couples without children who had Understanding the relationships between perceived stigma,
not confided in others about their fertility difficulties suffered disclosure, social support and partner relationship may there-
joking questions and comments about their sexual behaviour fore assist in prediction of levels of distress. A potential
and potential or absent outcomes. Such experiences may model for understanding how these variables may interact is
result in more fear around disclosure, feelings of isolation presented in Fig. 1. People experiencing infertility problems
and withdrawal from social situations, which could then may perceive infertility as being stigmatizing. This may
impact on emotional status. However, where the fertility result in lower disclosure of their difficulties to others. Lower
problem is known to others, it has been shown that people disclosure may result in lower social support and as others
are likely to receive comments that they perceive as unsuppor- are unaware of the couples’ difficulties, the couple may face
tive (Miall, 1985). The importance of others’ knowledge and insensitive comments in relation to their childlessness. Feelings
responses is further endorsed by Mindes et al. (2003) who of isolation and perception of low social support may then
found that not only were unsupportive responses from others adversely affect distress levels. This may be influenced by
associated with poorer adjustment at the time, but they also pre- the quality of relationship with the partner.
dicted depressive symptoms and psychological distress in those Measures of distress may be generic or specifically infertility
who subsequently remained infertile. related. Infertility-related distress can potentially lead to more
It has been postulated that secrecy requires constant vigi- generalized distress where individuals begin to experience
lance in social interactions and therefore has significant anxiety or depression symptoms in relation to other areas of
psychological costs (Smart and Wegner, 2000). Specifically, their lives. Finally, as differential role expectations and socia-

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‘the pre-occupation model’ suggests that the more one lizations exist for men and women (Becker, 1990; Greil, 1991),
attempts to suppress a particular idea the more it intrudes the perception of stigma in relation to subfertility is likely to
into consciousness. Wegner (1994) has postulated the idea differ. Consequently, gender differences must be considered
of a duality of processing involving conscious suppression within this model.
and then unconscious ‘ironic monitoring’ of that process The present study aims to
which inevitably brings those thoughts into consciousness.
There are therefore grounds to suggest that higher stigma (i) describe and compare the levels of perceived stigmati-
may link with lower disclosure and greater distress. Van zation, disclosure patterns and social support in men
Balen and Trimbos-Kemper (1994) suggested that the 10% and women embarking on infertility work-up and to
of men who kept their infertility as a secret were more dis- make gender comparisons;
tressed. Disclosure is also an important issue in a variety of (ii) test the model of proposed inter-relationships between
health conditions such as HIV status. Kelly and McKillop stigma, disclosure, social support, partner relationship
(1996) provide a detailed discussion of psychological issues and fertility related and generic distress.
related to patterns of disclosure. Specific hypotheses
The quality of the relationship (Newton et al., 1999) and
communication (Schmidt et al., 2005) with the partner (i) Stigma is inversely related to disclosure and social
impact on the emotional status of subfertile couples. The support and positively associated with fertility related
partner is potentially a crucial source of support for men and and general distress;
women who are reluctant to discuss their fertility difficulties (ii) disclosure is inversely related to social support;
with others (Hirsh and Hirsh, 1989). In the context of a stigma- (iii) social support is inversely related to fertility and
tizing stressor, the need for the partner for support and general distress;
emotional well-being may well increase. (iv) the effect of perceived stigma on emotional distress
Seeking treatment itself requires some level of confrontation will be affected by disclosure, partner and generic
and disclosure. However, the possible influence that the social support.
infertility-related perceived stigma and disclosure patterns
may have on physical, emotional and social well-being has
received little attention. A greater understanding of the
factors influencing the levels of distress and well-being at
this early stage in the process could prove valuable to counsel-
lors and other health professionals when identifying those in
greater need of input and also potentially inform the content
of therapeutic work. Most previous studies have tended to
focus on the emotional responses encountered later in the
process, after a specific diagnosis has been made or when the
treatment is initiated. There is evidence to suggest a relation-
ship between stress indicators and sperm quality (Fukuda
et al., 1996; Pook et al., 1999) and ovarian response to treat-
ment (Lancastle and Boivin, 2005), which highlights the
importance of identifying the factors that may influence
stress in the early stages of the process. Figure 1: A predictive model for emotional distress in infertility

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Relationship between perceived stigma, disclosure patterns, support and distress

Materials and Methods


Table 2: Fertility characteristics
Participants
Fertility characteristics Men (n ¼ 64) Women (n ¼ 87)
Participants were men and women attending a specialist infertility
centre for their first appointment between December 2002 and Mean duration of infertility 2.76 years (2.78) 3.44 years (3.38)
March 2003. One hundred and fifty-one people [87 women and 64 (SD)
men (62 couples)] completed the study. This constitutes 43% of a con- (Partner) Pregnant before (%) 19 (29.7) 32 (36.8)
(Partner) Outcome
secutive sample of attendees fulfilling the following inclusion criteria: Spontaneous abortion (%) 8 (42.1) 13 (40.6)
(i) new attendees for infertility treatment, (ii) have no children from Ectopic pregnancy (%) 1 (5.3) 3 (9.4)
their relationship and (iii) with sufficient English language to under- Termination (%) 5 (26.3) 8 (25.0)
stand and complete the measures. As the purpose was to investigate Live birth (%) 5 (26.3) 8 (25.0)
these factors as they relate to those embarking on infertility
work-up, it was appropriate to be as inclusive as possible.
Men in the sample were significantly older (mean ¼ 34.8 years, information sheet providing details of the study was also included as
SD ¼ 6.3) than the women (mean ¼ 31.8 years, SD ¼ 5.7), (t ¼ well as a reply slip, which the couples were asked to bring to their
3.06, d.f. 149, P , 0.01). The mean number of years participants initial appointment, detailing whether or not they were willing to be
had lived with their partner was 5.33 (SD ¼ 3.68) and 66.9% were approached to discuss participation in the study. Those in agreement
married. These demographic characteristics of the study sample are were then approached at the clinic by the researcher, prior to their
in harmony with those of the infertility first attenders population in appointment. Participants were provided with a questionnaire
terms of age with mean ages for men of 35.4 years (SD ¼ 6.3) and booklet to complete, separately and without consulting with one

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women of 31.8 years (SD ¼ 5.8). However, the study participants another, while waiting for their appointment or to post back if time
were slightly more likely to be married, 66% versus 60% for the poten- was insufficient.
tial population.
Table 1 shows the sample characteristics. For both men and women, Measures
the samples are slightly skewed towards the upper social class cat- The following measures were administered in the form of a question-
egories, based on the occupational status (Standard Occupational naire booklet.
Classification, 1991) and participants were predominantly of white
background. Ethnic minorities were less represented within the Adapted stigma consciousness questionnaire (Scale available
sample than within the clinic as a whole (5% versus 15%). from the authors)
Table 2 presents the fertility characteristics of the participants. The
The stigma consciousness questionnaire (SCQ) (Pinel, 1999) was
women reported experiencing fertility difficulties for slightly longer
developed to predict the extent to which individuals expect to be
than the men. Five women and nine men had had a biological child
stereotyped and discriminated against by others in general. This
from a previous relationship and one man and one woman had an
10-item scale was designed to be modified for different stigmatized
adopted child.
groups and therefore was adapted to measure stigma consciousness
relating to fertility difficulties. It included items such as ‘other
people have a lot more negative thoughts about people with fertility
Procedure
difficulties than they actually express’ and ‘Most people without fer-
The study was approved by the South Sheffield Ethics Committee.
tility difficulties have a problem viewing those with them as equals’.
A letter from the medical consultant inviting potential volunteers
One item from the 10-item scale (Number 9 relating to whether
was sent along with their initial appointment documents. An
those without fertility difficulties are perceived to discriminate
against those with) produced low internal consistency, and therefore,
was discarded from further analysis. A final score of stigma conscious-
Table 1: Sample characteristics
ness was determined by totalling the remaining nine items, scores
Men-frequencies Women-frequencies ranged from 0 to 54, with higher scores indicating greater stigma con-
(n ¼ 64) (%) (n ¼ 87) (%) sciousness. The final scale produced an acceptable internal consist-
ency, Cronbach’s alpha score, of 0.77.
Highest educational qualification
No exams 4 (6.3) 3 (3.4)
General Certificate Secondary 22 (34.4) 31 (35.6) The Disclosure Questionnaire (Scale available from the authors)
Education (GCSE)/Ordinary (O) A 17-item questionnaire was developed to assess disclosure beha-
level viour. The development of this questionnaire was informed by the
Advanced Level 6 (9.4) 8 (9.2)
patient profile questionnaire (Henderson et al., 2002), designed to
Vocational Qualification 11 (17.2) 16 (18.4)
Degree/Further Degree 21 (32.8) 29 (33.3) assess disclosure behaviour in cancer patients. The measure asks
Social class based on occupationa who ‘the participant has spoken to or asked another to tell about
I 9 (14.8) 9 (11.1) their fertility difficulties’ and yields three scores—disclosure to
II 23 (37.7) 26 (32.1) immediate family, disclosure to others and total disclosure.
III 18 (29.5) 36 (44.4)
IV 10 (16.4) 6 (7.4) Section 1 covers disclosure to immediate family. Responses relate
V 1 (1.6) 4 (4.9) to eight categories covering their own or partner’s mother, father,
Ethnicity brothers and sisters, respectively. A score of 1 was available for
White Background 61 (95.3) 82 (94.3) each of the four sections for own and partner’s family told. A score
Pakistani 1 (1.6) 1 (1.1)
of 21 was given to each parent/partner’s parent that was available
African 1 (1.6) 2 (2.3)
Not Specified 1 (1.6) 2 (2.3) to disclose to but who was not told. To score disclosure to own and
partner’s brothers and sisters, respectively, 21 was given if no sib-
a
Taken from the Standard Occupational Classification (1999). lings of a particular gender were told and a score of 21 was also

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Slade et al.

given if partner’s siblings of that gender were not told. If some broth- consistency, assessed by Cronbach’s alpha, being 0.90 for the
ers or sisters were told a score for disclosing to that grouping was depression scale and 0.93 for the anxiety scale. A total of the two
derived by calculating how many were told divided by the number dimensions are used as a measure of general distress.
available to tell. A score of 0 was given to any category where there
was no one available to tell. Total scores for immediate family had Analyses and statistics
a possible range of 28 to 8. Negative scores indicate non-disclosure
Analyses were conducted using SPSS11.0 with parametric and non-
despite the family member being available to tell whereas higher
parametric statistics being applied dependent on the nature of the dis-
scores indicate more people told.
tributions. Data are presented as means (standard deviation) and a
Section 2 covers disclosure to others and assesses the number of
P-value ,0.05 was considered significant. To test the proposed
other people told in the categories of: own and partner’s other
model, a path analysis was completed using the approach outlined
family members, close and distant friends, co-workers, people
by Kenny (2004). The value of a path analysis in this context is that
having similar difficulties and others in general. Respondents indi-
it provides an integrated understanding of how factors may inter-relate
cated which frequency rating was appropriate for each category with
to lead to the critical outcomes of high distress and therefore identifies
five possible options (0, 1, 2 –4, 5– 10 and more than 10). Scores
potential underlying psychological processes. In this approach to path
from each category were totalled using the lower end of the frequency
analysis, direct and indirect paths between variables are tested by
range. Higher scores indicated more people told.
regression analysis and the significant paths retained. P-values
An overall total disclosure score was calculated which was the total
,0.05 were taken as significant.
number of people disclosed to, based on the total number of family
members told and the ‘others’ scores. Spearman correlations identified
high consistency between these measures of disclosure with no coeffi-

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cients falling below 0.7. As a result for the path analysis, to test the Results
proposed model, total number of people disclosed to was the chosen Gender comparisons
variable. However, the separate dimensions are shown for the individ- Gender differences were analysed using the independent t-test
ual analyses. or Mann – Whitney test. Table 3 shows women had disclosed to
significantly more people than men despite reporting higher
The Duke-UNC functional social support questionnaire
stigma. Women also scored significantly higher than men on
(Broadhead et al., 1988)
all three measures of distress (infertility-related strain,
This eight-item, functional, social support questionnaire yields a
anxiety and depression symptoms). Women were found to
single total support score, with higher scores indicating greater percep-
score significantly higher than men on all subscales of the
tions of support, was used. The scale showed high internal consistency
(Cronbach’s alpha ¼ 0.88). An example of an item (reverse scored) is FPI with the exception of childfree/status quo acceptance.
‘I get invitations to go out and do things with other people’ with visual
analogue ratings being from ‘as much as I would like’ to ‘much less Child status and duration of infertility
than I would like’. The few participants who had had a biological child showed no
significant differences in stigma and duration of infertility was
Dyadic Adjustment Scale-7 (Spanier, 1976) uncorrelated with any outcome measure except anxiety in men
A seven-item short form of the dyadic adjustment scale (DAS) (rS ¼ 0.33, P , 0.05).
(Spanier, 1976) was used to assess levels of adjustment and distress
in the couple relationship. This measure contains seven items, six
measured on a six choice-scale and one on a seven-choice scale, Table 3: Gender comparisonsa
with higher scores indicating more relationship adjustment. The Variable Men Women t/z scores
short form has well-established validity (Sharpley and Rogers, 1984; (n ¼ 64) (n ¼ 87) (t-tests/
Hunsley et al., 2001). The present study identified high internal con- Mean (SD) Mean (SD) Mann–
sistency (Cronbach’s alpha ¼ 0.80). Whitney)

Disclosure to immediate own 21.54 20.00 t ¼ 21.71


The Fertility Problem Inventory (Newton et al., 1999) and partners’ family (5.63) (5.06)
This standardized measure was selected as a means of measuring fer- Disclosure to others 4.45 (8.29) 5.36 (8.54) z ¼ 21.55
Total number of people 7.16 (10.48) 8.80 (10.23) z ¼ 21.969*
tility specific distress. It consists of 46 items, rated on a six-choice disclosed to.
scale, with higher scores indicating more psychological strain or dis- Stigma 16.81 (8.05) 22.30 (9.93) t ¼ 23.63***
tress. It assesses fertility related distress falling under five domains, Perceived social support 34.22 (5.35) 32.87 (6.86) z ¼ 20.91
social, sexual, relationship, future concern and role identification, Infertility-related strain (FPI) 119.30 143.69 t ¼ 24.79***
separate subscales: (28.25) (33.8)
with a final score indicating overall infertility-related strain. High
Social concern 20.86 (7.46) 30.47 (9.69) t ¼ 26.86***
internal consistency for the whole scale was found for the present Sexual concern 17.09 (6.82) 21.20 (8.19) t ¼ 23.34**
study (Cronbach’s alpha ¼ 0.93). Relationship concern 20.73 (7.74) 23.59 (9.27) t ¼ 22.00*
Role identification 32.56 38.50 (9.66) t ¼ 23.59***
(10.49)
The Hospital Anxiety and Depression Scale (Zigmond and Childfree/status quo 28.05 (7.58) 29.97 (7.82) t ¼ 21.51
Snaith, 1983) acceptance
This standardized measure, designed for use with a medical popu- Anxiety symptoms (HADS) 6.20 (3.56) 8.91 (3.93) t ¼ 24.35***
Depressive symptoms (HADS) 2.34 (2.1) 3.93 (3.19) t ¼ 23.68***
lation, was selected as a general measure of distress, assessing
anxiety and depression symptoms. It consists of seven depression *P , 0.05, **P , 0.01, ***P , 0.001 (all two-tailed).
items and seven anxiety items, which are rated on a scale of 0 to a
Non-parametric analyses are provided where there is deviation from
3. This scale has shown good reliability and validity, with internal normality.

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Relationship between perceived stigma, disclosure patterns, support and distress

Relationships between stigma, disclosure and social support both men and women in relation to depression symptoms,
The associations between stigma, disclosure and perceived over and above that predicted by partner relationship satisfac-
social support were measured using Spearman’s correlations. tion. Therefore, social support only was selected for further
For men, stigma consciousness was significantly, negatively analysis.
correlated with the total number of people disclosed to
(rS ¼ 20.26, P , 0.05). For women, there were no associ- Testing the model using path analysis
ations between stigma and disclosure. No significant associ- In order to ensure that a specific hypothesis-driven testing
ations were found between disclosure patterns and perceived was followed using the key variables, the analysis focused
available social support for men or women. However, negative only on stigma, total disclosure, social support, global
relationships between stigma consciousness and perceived infertility-related distress and total distress (HADS total).
social support were identified for both genders (rS ¼ 20.42, The analyses were conducted separately for men and women.
P , 0.01 for men and rS ¼ 20.28, P , 0.01 for women). Several of the variables were first transformed to produce dis-
tributions that conformed more closely to normal prior to
The relationship between measures of perceived support analysis. These were: disclosure (which was log-transformed),
and distress support (which was reflected and log-transformed, thereby
The relationships between perceived availability of social becoming a measure of lack of support) and total HADS
support, relationship satisfaction and the measures of distress (which was square-root transformed). Since the model pro-
were assessed using Spearman’s correlations (separately for poses a single causal chain of one independent and four depen-

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men and women). Table 4 shows that for men, negative associ- dent variables, a sequence of multiple regression analyses was
ations were found between perceived available social support conducted regressing each dependent variable on all prior vari-
and all three measures of distress, whereas partner relationship ables. Following the procedure outlined by Kenny (2004), the
satisfaction was only found to have a significant negative regressions were conducted first with all paths present,
association with depressive symptoms. A similar pattern of second with all predicted paths and significant non-predicted
associations is shown for women, although partner relationship paths present and finally retaining only significant paths (all
satisfaction was also found to have a significant negative alphas were set at 0.05).
association with anxiety symptoms. As the social support The outcomes of these path analyses for men and women are
measure potentially encompasses support from the partner, shown in Figs 2 and 3. The final model was tested in the Mx
further hierarchical regression analysis (Table 5) was com- Structural Equation Modeling package (Neale et al., 2003) to
pleted to check whether it contributes to prediction of distress obtain an index to assess the goodness of fit of each of the
above and beyond relationship satisfaction. The two variables proposed models to the data. The root mean square error of
accounted for 40% and 46% of the variance in depression approximation (RMSEA) index gave the very acceptable low
symptoms for men and women, respectively. They also values of 0.00 for the model for men and 0.056 for the model
accounted for 12% of the variance in anxiety symptoms for for women. Values less than 0.06 indicate a close fit (Hu and
women. Table 5 shows that for women, perceived available Bentler, 1999).
social support plays a significant individual role in predicting Essentially for men, as predicted by the model, stigma is
anxiety symptoms, over and above that accounted for by inversely related to disclosure, but this does not form a
partner relationship satisfaction. This was also the case for pathway through to low support and distress. Instead, there is

Table 4: Correlations for the variables with results for women bottom left quadrant and men upper right sections of the table are shown (Spearman’s are
presented for consistency as typically one variable of the pair was non-normally distributed)

Stigma Total Perceived social Partner Global strain (FPI) Anxiety (HADS) Depression
disclosure support relationship (HADS)
satisfaction

Stigma 20.26* 20.42*** 20.03 0.43*** (0.40***) 0.44*** 0.08


Total 20.22 0.02 20.14 0.10 (0.12) 20.08 0.08
disclosure
Perceived 20.28** 0.01 0.47*** 20.53*** (20.31**) 20.39** 20.54***
social
support
Partner 20.23* 20.10 0.40*** 20.17 (20.15) 20.18 20.48***
relationship
satisfaction
Global 0.67*** (0.64***) 0.13 (0.10) 20.25* (20.23*) 20.16 0.43*** (0.31**) 0.38** (0.29*)
strain (FPI)
Anxiety 0.41*** 0.21 20.24* 20.28** 0.48*** (0.45***) 0.55***
HADS
Depression 0.40*** 0.15 20.55*** 20.43*** 0.55*** (0.52***) 0.67***
HADS

Global strain (FPI) excluding social concern is presented in brackets following results for full score.
*P , 0.05, **P , 0.01, ***P , 0.001 (all two-tailed).

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Slade et al.

Table 5: The effect of social support on distress while controlling for partner relationship satisfaction using hierarchical regressions

Dependent variable Predictor variables R square change F Change Significance Overall R square for both
(df1, df2) predictor variables

Anxiety symptoms (HADS) Partner relationship 0.07 6.58 (1,85) 0.012 0.12
in women satisfaction
Perceived social support 0.05 4.28 (1,84) 0.042
Depressive symptoms Partner relationship 0.16 16.51 (1,85) ,0.001 0.46
(HADS) in women satisfaction
Perceived social support 0.29 45.08 (1,84) ,0.001
Depressive symptoms Partner relationship 0.17 12.35 (1,62) 0.001 0.40
(HADS) in men satisfaction
Perceived social support 0.23 22.89 (1,61) ,0.001

a strong pathway to perceptions of low support and through this The analysis of gender differences
to both infertility specific and general distress. There are also Women reported higher levels of fertility-related stigma than
additional direct pathways to both measures of distress. Inter- men. This could indicate that women are more sensitive to per-
estingly, the infertility-related distress is not directly linked ceptions of stigma in general. However, Pinel (1999) found, in
to more generalized distress for men.

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a study of stigma consciousness in the general population, that
For women, there are many similarities but important men were more stigma conscious than women, on stigma
differences. Step 1 of the model is not supported in that related to gender. Another explanation could be that women
stigma does not predict disclosure. As for men, there is a sig- are more at risk of being stigmatized for fertility difficulties
nificant pathway from stigma to perception of low support than men. Previous research has suggested that the socializa-
and through this to general distress but not to infertility- tion process promotes different meanings around procreation
specific distress. However, there is a strong direct pathway for men and women, reflecting the virility of the man,
not mediated by support from stigma to infertility-specific whereas motherhood is more central to the female identity
distress. Additional paths indicate that for women high infer- (Mahlstedt, 1985).
tility distress is associated with high general distress and the Despite greater stigma, women also reported greater disclos-
greater the disclosure to others the greater the general ure. Other studies have suggested that women are more likely
distress. to communicate to others about their fertility difficulties than
men (Berg and Wilson, 1991; Beutel et al., 1999; Schmidt
et al., 2005), although the degree of communication does not,
Discussion in this study, correspond absolutely to the measure of disclos-
This study investigated whether stigma affects disclosure ure that represents the number of people rather than the
which in turn was hypothesized to influence perceived social frequency of discussion. The tendency for women to disclose
support availability and consequently distress in new patient more than men about stressors in other contexts is well docu-
attenders at an infertility clinic. To maximize the generic appli- mented (Tamres et al., 2002).
cability of the study findings, the aim was to be as inclusive as Similar to other studies no gender differences were found
possible. The data therefore were derived from a heterogeneous between men and women on perceived availability of social
sample in which specific location of cause was not yet support (Tilden et al., 1990). Mean levels of support were at
identified. the higher end of the range for community samples indicated

Figure 2: Path analysis for men

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Relationship between perceived stigma, disclosure patterns, support and distress

Figure 3: Path analysis for women

by Broadhead et al., (1988). However, the study results suggest In the present study, it was not disclosure that was found to

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that as women disclose more and are more stigma conscious, affect perceptions of availability of social support as predicted
they may be more vulnerable to negative social experiences but stigma consciousness. Higher stigma was related to lower
related to their infertility than men. perceptions of available social support for both men and
Considering the psychological status, women were found women. Individuals are known to seek social support less in
to report significantly higher distress, in terms of infertility- situations that threaten self-esteem (Folkman et al., 1986).
related strain (FPI), anxiety (HADS) and depression (HADS), Therefore, the relationship found between stigma conscious-
than men. This has also been found in other infertility popu- ness and social support may be connected through self-esteem,
lations (Abbey et al., 1991; Berg and Wilson, 1991). Overall, which requires further investigation.
means for global strain on the FPI in the current sample were The lack of association between disclosure and social
equivalent to those in other infertility samples for men (119.3 support suggests that perceptions of support from others may
versus 117.0) but substantially higher for women (143.7 not require people to disclose their fertility difficulties.
versus 134.4) (Newton et al., 1999). However, the measure of support in the present study did not
assess how supported people felt in relation to their fertility dif-
The model ficulties but their perceptions of support in general. The former
The model predicts that stigma would be associated with may have produced different results. The measure of disclosure
reduced disclosure and although this was supported for men, also assessed the number of people disclosed to rather than fre-
no association was found for women. Findings within the quency of communication with others. Social support may be
coping literature may help to explain why feelings of stigma associated with regular communication with a small number
were not found to affect disclosure patterns in women. of people rather than telling many people but discussing this
Women have been found to seek others’ support as a coping only once. The work by Schmidt et al. (2005) addressing the
mechanism more frequently than men (Wright et al., 1991; different dimensions of communication about infertility indi-
Lee et al., 2000). It may be difficult for women to inhibit a cates the need for further investigations into both actual and
coping response, they typically use even though it may create perceived support as well as frequency of communication
further difficulties for them. Interestingly, the path analysis and number of people disclosed to provide a clearer picture.
suggested for women greater disclosure was associated with The results of the present study suggest that the original pro-
high-generalized distress. Restriction of potentially stigmatiz- posed model over emphasized the role of disclosure. Stigma
ing information may allow for improved sense of control and consciousness may influence the extent to which people inter-
containment of the impact of fertility difficulties. Once a wide pret ambiguous responses from others as being stigmatizing
variety of others in different contexts such as work, friends are and as a consequence lead to less perceived support and
aware, it may be that this allows no respite from the possibility more feelings of stigma. We, therefore, propose that future
of others raising this issue, thereby limiting predictability in studies should use longitudinal designs to identify whether
social situations. These results also contrast with the view that stigma leads to lower perceptions of support or visa versa.
‘holding a secret’ inevitably intensifies the stressful impact of As predicted, higher perceptions of social support avail-
an adverse event. Alternatively, it may be that it is the degree ability were associated with lower distress, in terms of both
of distress that drives women to discuss with others as a way infertility specific and general distress in both men and
of attempting to manage this impact. However, consistent women. Perceived social support was found to be predictive
with the present findings, McEwan et al., (1987) found that of such distress even when the effects of partner relationship
people experiencing fertility difficulties, who shared their diffi- had been accounted for. This suggests that degree of support
culties only with a partner rather than seeking social support from outside the partner relationship has an important influence
outside the partnership show less emotional distress. on distress levels, in people experiencing fertility difficulties.
2315
Slade et al.

The initial model (Fig. 1) did not predict that stigma con- aspect of life that may be causing distress, it may be that
sciousness would have a direct effect on distress. However, containment is more effective particularly in the early stages.
for both men and women, a direct pathway from stigma to Certainly, this study suggests therapeutic work should not
infertility-specific distress was found. In addition, for men automatically encourage people to seek support through
only, stigma also linked directly to generic distress. Of particu- widely disclosing their fertility difficulties. However, disclos-
lar interest is that for women, there was a significant pathway ing to others in similar situations may reduce the stigma and
from infertility-related distress to generalized distress, the level of anxiety which argues further consideration of the
whereas for men these were not directly related. This suggests value of support groups.
again that whereas for men fertility related distress may be
relatively well contained and does not influence more generic
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