Australian Occupational Therapy Journal (2019) 66, 154–163 doi: 10.1111/1440-1630.

12520

Feature Article

Adaptation of the Possibilities for Activity Scale for

women encountering cancer (PActS-W)
Mackenzi Pergolotti,1 Kemi M. Doll,1 Emily O. Fawaz2 and Bryce B. Reeve1
1
Cancer Outcomes Research Group, Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel
Hill, Chapel Hill, North Carolina, and 2Department of Occupational Therapy, Colorado State University, Fort Collins,
Colorado, USA

Background/aim: The original Possibilities for Activity Introduction

Scale (PActS) examined the internalised societal pressures
Participation in activity that is personally meaningful
of older adults with cancer. Previous research found that
can improve quality of life for adults with cancer
scores from the original PActS scale were associated with
(Sviden, Tham & Borell, 2010). In occupational science,
participation in meaningful activity. Women of working scholars have discussed the additional impact of societal
age may have different societal pressures than older adults, pressures on participation and found there are certain
which could impact their quality of life. Our aims were to activities adults perceive they should be and could be
(i) adapt the scale specifically for women, (ii) test conver- doing, called occupational possibilities (Laliberte Rud-
gent and structural validity and (iii) test internal consis- man, 2010). A person’s occupational possibilities
tency reliability. depend on their situation and context. For example, as
Method: First, we completed a literature review to add Laliberte Rudman found, older adults may feel pressure
new items, then measured psychometric properties of to do certain occupations, such as being active, engag-
PActS-W. ing in shopping activities, and eating healthy. She
Findings: A total of 186 women, one month after cancer argued, persons have certain possibilities that are
surgery completed PActS-W. PActS-W demonstrated con- afforded and understood as available and socially
vergent-related (physical health r = 0.40, mental health acceptable occupations, for example older adults riding
r = 0.30, P < 0.01), structural validity (CFI, 0.96; a bicycle or buying a new house and moving South.
RMSEA, 0.10; IFI, 0.96, NFI, 0.94) and high internal These occupations become meaningful because they are
consistency reliability (stratified coefficient a = 0.90). socially accepted, and adults feel they should be or
Conclusion: The PActS-W may be useful for measuring could be doing these accepted occupations. We believe
women’s internalised societal pressures after encountering an adult may be more likely to recognise these inter-
cancer, which relates to their quality of life, but further nalised societal pressures to participate in meaningful
testing is needed. activities when faced with a severe illness, such as can-
cer, that could change perspectives, or make engaging
KEY WORDS cancer, occupational possibilities, PActS, in these occupations difficult. As occupational thera-
scale development, women’s health. pists, asking our clients about occupations they feel like
they ‘should be’ and ‘could be’ doing may illuminate
internalised societal pressures, and potential participa-
tion restrictions related to quality of life. This differs
Mackenzi Pergolotti PhD OTR/L; Director. Kemi M. Doll from typical performance-based occupational assess-
MSCR, MD; Assistant Professor; Division of Hematology
ments of basic and instrumental activities of daily living
and Oncology at the University of Washington at Seattle.
Emily O. Fawaz MS; Graduate Research Assistant; Color- that measure the quality or quantity of an individual’s
ado State University, Department of Occupational Therapy. participation in daily activities.
Bryce B. Reeve PhD; Professor Director; Center for Health Cancer and its treatment, unlike acute illness or
Measurement Duke University. injury, is unique as it causes a gradual decline in
Correspondence: Mackenzi Pergolotti, Research for ReVital strength and overall function and leaves individuals
Cancer Rehabilitation, Select Medical, 800 Oval Drive, Fort with long-term physical and psycho-social effects that
Collins, CO 80523-1501, USA. Email: mpergolotti@se- negatively impact their ability to participate in the
lectmedical.com meaningful activities of their daily life, and decrease
Accepted for publication 2 August 2018. their quality of life (Baxter, Newman, Longpre & Polo,
2017). The original Possibilities for Activity Scale
© 2018 Occupational Therapy Australia
PACTS FOR WOMEN 155

(PActS) was developed to operationalise the construct their physical and psychological experience due to
of occupational possibilities for older adults with multi- embarrassment and fear of stigmatisation. Additionally,
ple types of cancer (breast, colorectal, lung, leukaemia/ some women report fear of gynaecological conditions
lymphoma, etc.) and at different time points (just diag- being associated with promiscuous behaviour (Senn
nosed, in treatment or after treatment) of survivorship et al.). Little is known about how their perceived soci-
(Pergolotti, Cutchin & Muss, 2015), see Appendix I. In a etal pressures to participate in idealised activities, or the
sample of 71 older adults with cancer, the PActS score, activities associated with the roles of a working-age
which was a composite score of both subscales, was the woman, could potentially contribute to restricting their
only predictor of participation in meaningful activity participation in activity and their feelings of invisibility.
above a measure of functional status, cancer type, social The activities that women feel they could be or should
support and demographics (Pergolotti et al.). We feel be doing may differ from those of older adults due to
the PActS and potentially a new scale, the PActS-W differences between the expectations of working-age
could have relevance for occupational therapists clini- women and older adults. Because of this, we felt that
cally, by providing therapists with a tool to (i) better items relevant to the experiences of working-age
understand the pressure or desire an individual may women needed to be added, and the original PActS
feel to participate in certain activities, and (ii) to pro- adapted and re-evaluated. We included measures of
mote conversation between the client and therapist to health-related quality of life (Patient-Reported Outcome
address discrepancies between a client’s expectations Measure System (PROMIS)) in conjunction with the
for activity and their confidence in participating in those PActS-W to understand how activity expectations relate
activities. to other phenomena and to further test convergent
Some activities that individuals may find meaningful validity. Researchers have found, regardless of health
may be considered socially acceptable or associated status, people with lower social positions rate their
with societal pressures related to gender roles and health-related quality of life lower than more advan-
expectations about engaging in certain ‘gender-specific’ taged counterparts (Delpierre et al., 2012). Because of
activities. Due to these internalised gender expecta- this we hypothesised the PActS-W would be correlated
tions, women may have the similar expectations about to health-related quality of life (HRQOL) but be measur-
themselves and the activities in which they believe ing a different construct. This paper aims to describe
they should or could participate (Ahn, Haines & the (i) development of new items specifically for
Mason, 2017). Research suggests that women tend to women, (ii) testing of convergent and structural validity
complete more work in the house than men despite and (iii) internal consistency reliability.
the growing number of women in the workforce, and
that women are expected to be nurturing caretakers.
Therefore, women may internalise these pressures, Methods
increasing feelings of responsibility related to gendered
Study design
expectations and confidence in these activities (Ahn
et al.). Classical test theory guided this scale adaptation
We believe women of working age who encounter (DeVellis, 2006; DeVellis, 2012). To adapt this scale, we
cancer (either suspected and/or diagnosed) may have had a three-step process: (i) literature review to select
possibilities for activities they consider ideal that differ and add new items to scale appropriate to population,
from older adults. To that end, we chose to adapt the then (ii) testing of convergent and structural validity
original PActS for working-age women. For this study, through administering the tool and testing its correla-
we chose to work with women with suspected gynaeco- tion with a HRQOL measure to a sample of women,
logic cancers because (i) the shared experience of gynae- and testing its correlation with a related HRQOL mea-
cologic cancer (i.e. cervical, ovarian, uterine, vaginal sure then lastly, (iii) testing of internal consistency relia-
and vulvar) is unique to women (Centers for Disease bility through administering the tool to the same
Control and Prevention, 2017) and (ii) gynaecological sample of women.
cancer directly involves organs related to femininity,
sexual function and reproduction (Akyuz, Guvenc, Literature review to develop new items
Ustunsoz & Kaya, 2008). In a qualitative study about In order to determine the additional items/activities
the post-surgical experience of women diagnosed with that could be considered for PActS-W, we completed a
vulvar cancer, women described the surgeries (such as literature review to find evidence behind potential activ-
a partial or radial vulvectomy) as embarrassing, disfig- ities women may perceive they should be or could be
uring and mutilating (Senn et al., 2011). After treatment doing. As a study team, we examined literature regard-
for gynaecological cancer, women report feeling ing women’s expectations for specific activities to dis-
restricted in their ability to participate in activities, cern what types of activities should be included. We
decreased quality of life (Akyuz et al.), feeling invisible then discussed each item and added terms we agreed to
(Jefferies & Clifford, 2012), and avoiding discussion on as a team.

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156 M. PERGOLOTTI ET AL.

Participants sexual activity, taking care of others, and working and/or

Participants were recruited through a longitudinal doing household activities. These items were added to
cohort study examining health-related quality of life reflect literature stating potential activities that working-
and surgical outcomes of women undergoing gynaeco- age women may feel like they should be or could be
logic cancer surgery (Doll, Barber, Bensen, Snavely & doing; we put the activity working and or doing house-
Gehrig, 2016). Women were recruited within the outpa- hold activities together to not single out women who
tient gynaecologic oncology clinics. Inclusion criteria for just work out of the home, vs. those who work doing
the parent study included: women who were 18 years household activities (Askari, Liss, Erchull, Staebell &
of age and older, spoke English or Spanish, and had Axelson, 2010; Haywood, 2013; Smith-DiJulio, Windsor
newly diagnosed or suspected gynaecologic cancer with & Anderson, 2010).
scheduled surgical management. All women in the Procedure
study had suspected gynaecologic cancer and received
surgery; however, some of the women had benign final This project was reviewed and approved by the Human
pathology upon analysis. Based on the negative impact Research Protections Program, Institutional Review
of stigma on women who experience surgical treatment Board (IRB) (IRB Number: 09-0605) and procedures
for gynaecological cancers (Akyuz et al., 2008; Senn followed were in accordance with the ethical stan-
et al., 2011), the physical and psychological changes dards of IRB board and consistent with the revised
involved with surgery, and the focus of the PActS-W (2000) Helsinki Declaration. All participants signed an
being on participation, rather than medical outcomes, informed consent.
the authors decided that it was appropriate to include
women with benign pathology. All the women shared
Data collection
the experience of an initial cancer diagnosis and surgi- For this study, women at one-month post-surgery were
cal treatment, and therefore may have similar feelings administered the PActS-W and the Patient-Reported
about participation in their activities. Outcomes Measurement Information Systemâ (PROMIS)
Global-10. PROMIS Global-10 has been validated in
Tools both cancer and general populations and contains ten
items total (Cella et al., 2010; Hays, Bjorner, Revicki,
Testing new items Spritzer, & Cella, 2009; Reeve et al., 2007). We deter-
The structure of the scale remained the same as the mined sample size as ten participants per scale item as
original PActS with two subscales representing what recommended to perform the analysis to test the dimen-
women feel like they should be (activity expectations) sionality of the scale, and before initial testing, the
and could be (activity self-efficacy) doing (Pergolotti & PActS-W contained 18 items, needing 180 participants
Cutchin, 2015). The original scale was scored as a sum at minimum (DeVellis, 2012).
score for both subscales to stay consistent with the theo-
rised unidimensional construct of occupational possibili- Data analysis
ties, representing both activity expectations and self-
Testing validity
efficacy. The original PActS demonstrated internal con-
sistency reliability (stratified coefficient a = 0.77) and We tested validity in two ways: (i) structural validity
construct-related (r = 0.58; P < 0.0001), structural (chi- using a confirmatory factor analysis (CFA) (Levine,
square = 61.57; CFI = 0.97; RMSEA = 0.05; TLI = 0.96; 2005) and (ii) convergent validity. CFA was chosen for
NFI = 0.91) and known-groups validity (Pergolotti et al., this model because it is a more powerful way (as
2015). opposed to exploratory factor analysis) to examine
All activities from the original development of the alignment between empirical data and the theoretical
PActS were retained for full analysis of all potential model (Kline, 2011). In this case, we tested the original
activities. The original activities were: creative activities, theoretical model developed for the PActS (Pergolotti
spiritual activities, getting around town, communicating with et al., 2015) with the additional questions added. Then
others, doing physical exercise, keeping up with traditional modification indices were examined in order to see
media and doing service activities. The item stems from which items were not performing well and modifica-
the original PActS were preserved: “How much do you tions were made by removing poorly performing items.
believe a person of your age and diagnosis should Good model fit was assessed through tests of model fit
be. . .?” representing activity expectation; and “How and criteria including the following: comparative fit
much confidence do you have that you could. . .?” rep- index (CFI; >0.95), root mean square error of approxi-
resenting activity self-efficacy. Response options also mation (RMSEA; <0.06); Incremental fit Index (IFI;
remained the same and ranged from 1, signifying “very >0.90); model chi-square (P < 0.05); and the normed fit
little”, to 5, signifying “quite a lot”. We added the fol- index (NFI; >0.95) (Bentler, 2007; Sivo, Fan, Witta &
lowing three items to the original scale: engaging in Willse, 2006).

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PACTS FOR WOMEN 157

Convergent validity is the degree to which two scales determine the problem when things go wrong in rela-
are related to one another. In this case, the PActS-W is tionships (Gupta, Zimmerman & Fruhauf, 2008; Hay-
hypothesised to be related to measures of quality of life. wood, 2013). These activities are considered
PROMIS Global-10, used for convergent validity, has heteronormative, and thus some women might not feel
two summary quality of life scores, Global Physical this is applicable to them.
Health (GPH) and Global Mental Health (GMH). Scores Researchers found women’s perception of activities
for each subscale are determined through a raw score that involved taking care of themselves, including phys-
that is transformed into a T-score and on a continuous ical activities, were considered secondary to taking care
scale with a mean score of 50 (standard deviation of of others (Farvid & Braun, 2006; Smith-DiJulio et al.,
10). This measure of quality of life has been shown to 2010). Askari et al. (2010) found women expected and
be related to participation in meaningful activity in a sought an ‘ideal’ relationship where they were in charge
variety of populations, and HRQOL has been shown to of significantly more than half of the responsibility of
be a similar construct, but not the same as social posi- family and household activities. The ability to perform
tion (Bize, Johnson & Plotnikoff, 2007; Delpierre et al., these activities is not only expected of women but also
2012; Eakman, Carlson & Clark, 2010; Mayo, Wood- valued by women (Perrone, Webb & Blalock, 2005).
Dauphinee, C^ ote, Durcan & Carlton, 2002; Sviden et al., These studies demonstrate the undertone of societal
2010). In addition, participation in activity rated as per- pressure that women face on a daily basis, to take care
sonally meaningful was strongly associated with the of others, complete household or other work, and par-
original PActS (Pergolotti et al., 2015). Furthermore, in ticipate in sexual activities. In dealing with illness, espe-
other studies examining self-efficacy and women with cially when taking care of others may become difficult,
cancer, self-efficacy was related to quality of life (Akin, women may face increased challenge to maintain their
Can, Durna & Aydiner, 2008; Northouse et al., 2002). daily roles, potentially reducing their quality of life
Therefore, quality of life was hypothesised as a related (Carr, Gibson & Robinson, 2001). Because societal pres-
but separate construct than the perception of activity sures on women are linked in part to sexual capacities,
expectations and self-efficacy as measured in the PActS-W. women with suspected gynaecologic cancers may feel
The expected Pearson correlation coefficients of 0.3–0.7 that their efficacy to perform expected activities is
(Sink & Stroh, 2006) demonstrating a positive and threatened, and those pressures may become more
moderate relative correlation with PROMIS scores apparent following this diagnosis.
demonstrating the PActS-W and PROMIS global are
related, but not the same construct. Sample characteristics
For this study, only the women who responded at the
Testing reliability one-month interview and filled out most of the scale
We used stratified coefficient alpha test for the internal (>50%) were included (n = 186). There was minimal
consistency reliability of the adapted instrument. This missing data (<1%) overall and so maximum likelihood
test was chosen because the PActS-W consisted of two estimation was used to impute missing values. (Kline,
subtests (activity expectations and activity self-efficacy). 2011; Larsen, 2011). All women had surgery and most
We computed alpha by taking the variance and Cron- (72%) of the women were eventually diagnosed with
bach’s alpha for each subtest to calculate the stratified gynaecologic cancer. The mean age was 57 years (range:
composite score (Huysamen, 2006; Osburn, 2000; Rae, 22–93), 77% were White, 58% were married and 26%
2007). We also report Cronbach’s alpha for reference reported having a high school education or less. A
(Rae). majority of the participants were diagnosed with
endometrial cancer (58%), and almost half, 46%, were
Stage I. See Table 1 for more demographic details.
Findings Health-related quality of life scores for GPH ranged
from 23 to 68, with mean of 45 (SD 8), and GMH ran-
Scale adaptation
ged from 25 to 68, with a mean score of 51 (SD 8). The
Gill (2008) and Lazar (2009) highlighted two activities PActS-W mean score was 39 (range: 12–60, SD 12).
that were most prominent in popular discourses about
women (i) maintaining sexual relationships, and (ii) Validity and reliability
being a care taker through consistent activity, and were
Structural validity
considered idealised in popular discourse for women of
working age (Farvid & Braun, 2014; Gill, 2009; Tyler, The initial model, including all items from the original
2004). For example, in order to maintain their quality of PActS and the additional activity items specific to work-
life, discourse in popular media detailed how women ing-age women, did not fit well (CFI, 0.65; RMSEA,
were not only expected to maintain their relationships 0.18; IFI, 0.66 NFI, 0.62). After attention to the construct,
alone but also to maintain a sense of the man’s needs at and discussion with the team, we removed the poorly
all times and ‘fix’ themselves by focusing inwards to fitting items: spiritual and creative activities. These

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158 M. PERGOLOTTI ET AL.

TABLE 1: Sample demographics (N = 186) alpha for the PActS-W score was also satisfactory,
a = 0.91, P < 0.01.
Characteristic n (%)
Discussion
Mean age 57 years (range 22–93, SD 13.28)
Race As an adaptation of the original PActS designed for
White 143 (77) older adults with cancer, the PActS-W has new popula-
Black 41 (22) tion specific items, has promising convergent and struc-
Other† 2 (1) tural validity, and reliability. With the addition of the
Marital status
new items, the adapted PActS-W, incorporates the soci-
etal pressures on women, specifically with regard to
Married 107 (58)
occupations of caretaking of others, household/work
Education
and sexual activities to create a more holistic and speci-
High school degree 48 (26)
fic measure of the activity possibilities for women expe-
less
riencing cancer.
Some college 58 (31)
Compared to other diagnoses such as brain injury,
Bachelor’s degree or 80 (43)
stroke, or orthopaedic injuries where rehabilitation ser-
higher vices such as occupational therapy are part of standard
Type of cancer care, individuals with cancer are largely underserved
Benign 52 (28) by these services (National Research Council, 2006). The
Uterine/endometrial 108 (58) unique role of occupational therapy in this setting is to
Cervical 19 (10) look beyond the more obvious physical impairments or
Vulvar 4 (2) decline that an individual may have as a result of can-
Other‡ 3 (2) cer and cancer treatment, and to understand how the
Stage§ experience as a whole: the physical, social, emotional,
Stage 0 58 (31) psychological, and spiritual aspects affect the individ-
Stage I 85 (46) ual’s participation in meaningful activities. This under-
Stage II 10 (5) standing, and evaluation can include the obvious basic
Stage III–IV 25 (13) self-care tasks, and also work, playing with their chil-
dren, being intimate with a partner and being involved
†Other = can include American Indian/Native Ameri- with a community. Occupational therapy treatment
can, Asian or Latin American. could impact women’s HRQOL after cancer by finding
‡Other cancers = Colon, Breast diagnosed. or creating solutions that would promote engagement
§n = 4 no stage reported.
in meaningful activity. For example, this could include
strategies to engage in sexual activities despite potential
physical changes following surgery.
items were from the original PActS, and it was hypothe- Both the PActS and the PActS-W are suggested as
sised these items were a potentially better fit for older additional tools to help occupational therapists to better
adults, and not women in this sample. Once items were understand the impact that the cancer experience has
removed, and we re-tested, our final model demon- on an individual’s occupational possibilities, or the
strated relatively good fit (CFI, 0.96; RMSEA, 0.10; IFI, meaningful activities that they believe they could be or
0.96, NFI, 0.94), see Figure 1 with included standardised should be doing. Although gender roles may not seem as
factor loadings and Table 2 for more details on model strict as they once were, there still remains an expecta-
indices. Appendix II provides the unstandardised factor tion for women to participate in certain activities (Ahn
loadings and the standard errors. et al., 2017). The PActS-W incorporates these activities:
sexual activities, caretaking, and household care/work,
Convergent validity to improve the relevancy of the measure to the popula-
The GPH and GMH scores were positively and signifi- tion of working-age women. As opposed to occupa-
cantly correlated with the final model summary PActS- tional therapy assessments which capture an
W score (GPH r = 0.40, GMH r = 0.30, P < 0.01). This individual’s occupational history which look at current
correlation suggests the concepts are positively related, or past participation in certain activities, this scale could
but measuring different concepts (Sink & Stroh, 2006). help therapist to capture and better understand the
pressure that women feel from themselves or society to
Internal consistency reliability participate in certain activities, not just the activities in
The stratified coefficient alpha reliability on the final which they are currently or were previously participat-
model produced satisfactory results (stratified coeffi- ing. Furthermore, women may not feel comfortable
cient a = 0.90, P < 0.01). For reference, the Cronbach’s speaking to physicians about their concerns or

© 2018 Occupational Therapy Australia

PACTS FOR WOMEN 159

.79 Getting around town

.76 Physical exercise

.72 Engaging in sex

Activity
expectations
.88
Taking care of others
.82
Working/household
.87
Service activities
.78

Getting around town

.83

.78 Physical exercise

Activity self .89 Engaging in sex

efficacy
.84
Taking care of others
.89

.71 Working/household

Service activities

FIGURE 1: Final model for PActS-W shown with standardized factor loadings.

TABLE 2: Model fit of the model of PActS-W taking care of other) may allow her to recognise and
discuss societal pressures associated with those activi-
Chi-squared (df, P) CFI RMSEA IFI NFI ties that may be the cause of stress.
PActS was the first of its kind to examine not only
Model 1 1169 (169, 0.000) 0.65 0.18 0.70 0.62 the activity self-efficacy but also the activity expecta-
Model 2 111 (45, 0.000) 0.96 0.10 0.96 0.94 tions as a whole. This study reports on psychometri-
cally adapting and testing the PActS for a new
CFI = comparative fit index; RMSEA = root-mean- population. Future research could provide further evi-
square error of approximation; IFI = incremental fit index; dence of its validity and reliability. Longitudinal testing
to examine how possibilities for activity may change
NFI = normed fit index.
over time would be valuable for research as an outcome
measure in health care. Testing with other measures of
limitations they are experiencing as a result of treatment activity expectations and participation, performing addi-
(Akyuz et al., 2008), and the PActS-W may provide an tional qualitative studies and studying test–retest relia-
opportunity to discuss topics that may otherwise go bility and how answers change over time could
unmentioned. Use of this scale in both research and strengthen the psychometric properties of this scale.
clinical settings could shed light on the restriction of Further research could also examine other populations,
participation in activity that women feel after being such as other cancer types, ages (e.g. young adults and
treated for cancer (Akyuz et al.). adolescents with cancer) and other chronic and poten-
This scale has promising uses in the clinic, the evalua- tially life-threatening conditions (e.g. chronic heart fail-
tion of which is beyond the scope of this paper. How- ure, congestive obstructive pulmonary disease). This
ever, the authors consider this tool as a starting point could broaden the scope of this measure and the under-
for deeper discussions about a women’s possibilities for standing of societal pressures as it compares across
activities and perceptions regarding participation in populations.
activity after cancer surgery, especially considering the There were a few limitations to this study. Although an
fear of disclosure and stigmatisation, self-image issues extensive literature search was completed, and we used
and embarrassment some women may have regarding topical qualitative analyses completed by multiple
their condition (Senn et al., 2011). researchers in multiple fields of study (Farvid & Braun,
In addition, addressing a women’s expectation and 2006, 2014; Gill, 2008, 2009; Tyler, 2004), there is always
self-efficacy regarding certain activities (e.g. sexual, or the possibility another activity could be included. Future

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160 M. PERGOLOTTI ET AL.

research using the scale with different populations may ● The PActS-W examines participation in activity from
shed light on new activities. By including women who a broader perspective, furthering our understand-
had benign tumours, we may have improved the general- ings of the changes in participation in activity after
isability but decreased the specificity of our findings. a major diagnosis.
However, women who were fortunate enough to not ● This study reports sufficient psychometric properties
have cancer still underwent potentially life changing of the PActS-W.
surgeries which typically require the removal of repro-
ductive organs under the suspicion of cancer. This trau-
matic experience would be similar throughout our Acknowledgments
sample. Furthermore, this study was limited to women Research reported in this publication was supported by
with gynaecologic cancers because of the fact that it is the National Cancer Institute of the National Institutes
unique to women and the direct impact that gynaecologi- of Health under Award Number R25CA116339. The
cal cancer treatment, including surgical removal or alter- authors thank the UNC Health Registry/Cancer Sur-
ation of female reproductive organs and/or genitalia, can vivorship Cohort (HR/CSC) participants for their
have physically and psychologically on a woman’s ability important contributions. The HR/CSC is funded in part
to participate in meaningful activities, especially sexual by the UNC Lineberger Comprehensive Cancer Center’s
activities or childrearing. Future studies examining a University Cancer Research Fund. This project was
wider range of cancer types and gathering normative reviewed and approved by the Human Research Protec-
data could improve generalisability. Although, the psy- tions Program (IRB Number: 09-0605) at the University
chometric properties for this scale were sufficient and of North Carolina at Chapel Hill.
promising for women with gynaecologic cancers, it needs
continued testing in a new sample to continue to improve
upon the model fit and the applicability of the scale.
References
Lastly, this scale may not be representative of all women Ahn, J. N., Haines, E. L. & Mason, M. F. (2017). Gender stereotypes
with cancer at large and will need to be re-tested in a lar- and the coordination of mnemonic work within heterosexual
ger sample of women with mixed cancer types. couples: Romantic partners manage their daily to-dos. Sex Roles,
77, 435–452.
Akin, S., Can, G., Durna, Z. & Aydiner, A. (2008). The quality of
Conclusion life and self-efficacy of Turkish breast cancer patients undergo-
ing chemotherapy. European Journal of Oncology Nursing, 12, 449–
The PActS-W operationalises and measures the percep- 456. https://doi.org/10.1016/j.ejon.2008.07.006.
tion of occupational possibilities for women who have Akyuz, A., Guvenc, G., Ustunsoz, A. & Kaya, T. (2008). Living with
encountered cancer. The PActS-W has promising con- gynecologic cancer: experience of women and their partners.
Journal of Nursing Scholarship, 40, 241–247. https://doi.org/10.
vergent-related and structural validity, and internal
1111/j.1547-5069.2008.00232.x.
consistency reliability. For women who have encoun- Askari, S. F., Liss, M., Erchull, M. J., Staebell, S. E. & Axelson, S. J.
tered and been treated for cancer, participation in (2010). Men want equality, but women don’t expect it: Young
activities may become restricted (Akyuz et al., 2008) adults’ expectations for participation in household and child care
and their quality of life could suffer. This scale is the chores. Psychology of Women Quarterly, 34, 243–252.
first of its kind, adapted specifically for this population Baxter, M. F., Newman, R., Longpre, S. M. & Polo, K. M. (2017).
and it has the potential to improve communication Occupational therapy’s role in cancer survivorship as a chronic
condition. American Journal of Occupational Therapy, 71,
between occupational therapists and women with can-
7103090010P7103090011–7103090010P7103090017.
cer by directly asking about the activities in which Bentler, P. M. (2007). On tests and indices for evaluating structural
they believe they should and could participate. This models. Personality and Individual Differences, 42, 825–829.
can shape clinical practice by expanding the traditional https://doi.org/10.1016/j.paid.2006.09.024.
measures of participation (e.g. physical ability) to Bize, R., Johnson, J. A. & Plotnikoff, R. C. (2007). Physical activity
include measurement of perceived social pressures. In level and health-related quality of life in the general adult popu-
research, this tool can be used to examine the impact lation: A systematic review. Preventive Medicine, 45, 401–415.
https://doi.org/10.1016/j.ypmed.2007.07.017.
of activity expectations and self-efficacy over time on
Carr, A. J., Gibson, B. & Robinson, P. G. (2001). Is quality of life
outcomes such as enhancing participation, quality of determined by expectations or experience? British Medical Journal,
life and leisure activity. 322, 1240.
Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S.
et al. (2010). The Patient-Reported Outcomes Measurement Infor-
Key points for occupational therapy mation System (PROMIS) developed and tested its first wave of
adult self-reported health outcome item banks: 2005–2008. Journal
● Women with cancer may feel pressure of activity of clinical epidemiology, 63 (11), 1179–1194.
expectations and self-efficacy. The PActS-W is the Centers for Disease Control and Prevention. (2017). Gynecologic cancers.
first scale of its kind to measure these possibilities Retrieved March 7, 2017, from https://www.cdc.gov/cancer/
for activity. gynecologic/

© 2018 Occupational Therapy Australia

PACTS FOR WOMEN 161

Delpierre, C., Kelly-Irving, M., Munch-Petersen, M., Lauwers- Lazar, M. M. (2009). Entitled to consume: Postfeminist femininity
Cances, V., Datta, G. D., Lepage, B. et al. (2012). SRH and and a culture of post-critique. Discourse & Communication, 3 (4),
HrQOL: Does social position impact differently on their link 371–400.
with health status? BMC Public Health, 12, 19. https://doi.org/ Levine, T. R. (2005). Confirmatory factor analysis and scale valida-
10.1186/1471-2458-12-19. tion in communication research. Communication Research Reports,
DeVellis, R. F. (2006). Classical Test Theory. Medical Care, 44, S50– 22, 335–338. https://doi.org/10.1080/00036810500317730.
S59. Mayo, N. E., Wood-Dauphinee, S., C^ ote, R., Durcan, L. & Carlton,
DeVellis, R. F. (2012). Scale development: Theory and applications (Vol. J. (2002). Activity, participation, and quality of life 6 months
26). Thousand Oaks, CA: Sage Publications. poststroke. Archives of Physical Medicine and Rehabilitation, 83,
Doll, K. M., Barber, E. L., Bensen, J. T., Snavely, A. C. & Gehrig, P. 1035–1042. https://doi.org/10.1053/apmr.2002.33984.
A. (2016). The health-related quality of life journey of gyneco- National Research Council. (2006). From cancer patient to cancer sur-
logic oncology surgical patients: Implications for the incorpora- vivor: Lost in transition. Washington, DC: National Academies
tion of patient-reported outcomes into surgical quality metrics. Press.
Gynecologic Oncology, 141, 329–335. https://doi.org/10.1016/j.yg Northouse, L. L., Mood, D., Kershaw, T., Schafenacker, A., Mellon,
yno.2016.03.003. S., Walker, J. et al. (2002). Quality of life of women with recur-
Eakman, A. M., Carlson, M. E. & Clark, F. A. (2010). The meaning- rent breast cancer and their family members. Journal of Clinical
ful activity participation assessment: A measure of engagement Oncology, 20, 4050–4064. https://doi.org/10.1200/jco.2002.02.054.
in personally valued activities. The International Journal of Aging Osburn, H. G. (2000). Coefficient alpha and related internal consis-
and Human Development, 70, 299–317. https://doi.org/10.2190/ tency reliability coefficients. Psychological Methods, 5, 343–355.
AG.70.4.b. https://doi.org/10.1037/1082-989X.5.3.343.
Farvid, P. & Braun, V. (2006). ‘Most of us guys are raring to go Pergolotti, M. & Cutchin, M. P. (2015). The Possibilities for Activity
anytime, anyplace, anywhere’: Male and female sexuality in Cleo Scale (PActS): Development, validity, and reliability. Canadian
and Cosmo. Sex Roles, 55, 295–310. https://doi.org/10.1007/ Journal of Occupational Therapy, 82 (2), 85–92.
s11199-006-9084-1. Pergolotti, M., Cutchin, M. P. & Muss, H. B. (2015). Predicting par-
Farvid, P. & Braun, V. (2014). The “Sassy Woman” and the “Perform- ticipation in meaningful activity for older adults with cancer.
ing Man”: Heterosexual casual sex advice and the (re) constitution Quality of Life Research, 24, 1217–1222. https://doi.org/10.1007/
of gendered subjectivities. Feminist Media Studies, 14, 118–134. s11136-014-0849-7.
Gill, R. (2008). Empowerment/sexism: Figuring female sexual Perrone, K. M., Webb, L. K. & Blalock, R. H. (2005). The effects of
agency in contemporary advertising. Feminism & Psychology, 18, role congruence and role conflict on work, marital, and life satis-
35–60. faction. Journal of Career Development, 31, 225–238. https://doi.
Gill, R. (2009). Mediated intimacy and postfeminism: A discourse org/10.1177/089484530503100401.
analytic examination of sex and relationships advice in a Rae, G. (2007). A note on using stratified alpha to estimate the com-
women’s magazine. Discourse & Communication, 3, 345–369. posite reliability of a test composed of interrelated nonhomoge-
https://doi.org/10.1177/1750481309343870. neous items. Psychological Methods, 12, 177–184. https://doi.org/
Gupta, A. E., Zimmerman, T. S. & Fruhauf, C. A. (2008). Relation- 10.1037/1082-989x.12.2.177.
ship advice in the top selling women’s magazine, cosmopolitan: Reeve, B. B., Hays, R. D., Bjorner, J. B., Cook, K. F., Crane, P. K.,
A content analysis. Journal of Couple & Relationship Therapy, 7, Teresi, J. A. et al. (2007). Psychometric evaluation and calibration
248–266. https://doi.org/10.1080/15332690802237987. of health-related quality of life item banks: plans for the Patient-
Hays, R. D., Bjorner, J. B., Revicki, D. A., Spritzer, K. L. & Cella, D. Reported Outcomes Measurement Information System (PRO-
(2009). Development of physical and mental health summary MIS). Medical care, 45 (5), S22–S31.
scores from the patient-reported outcomes measurement infor- Senn, B., Gafner, D., Happ, M. B., Eicher, M., Mueller, M. D., Eng-
mation system (PROMIS) global items. Quality of Life Research, 18 berg, S. et al. (2011). The unspoken disease: Symptom experience
(7), 873–880. in women with vulval neoplasia and surgical treatment: A quali-
Haywood, E. (2013). The liquid woman: A discourse analysis concern- tative study. Eur J Cancer Care (Engl), 20, 747–758. https://doi.
ing women’s sexual (in) abilities in women’s lifestyle magazines. org/10.1111/j.1365-2354.2011.01267.x.
Manchester: Manchester Metropolitan University, MMU Psychol- Sink, C. & Stroh, H. (2006). Practical significance: The use of effect
ogy Journal. sizes in school counseling research. Professional School Counseling,
Huysamen, G. (2006). Coefficient alpha: Unnecessarily ambiguous; 9, 401–411.
unduly ubiquitous. SA Journal of Industrial Psychology, 32, 34–40. Sivo, S. A., Fan, X., Witta, E. L. & Willse, J. T. (2006). The search
Jefferies, H. & Clifford, C. (2012). Invisibility: The lived experience for” optimal” cutoff properties: Fit index criteria in structural
of women with cancer of the vulva. Cancer Nursing, 35, 382–389. equation modeling. The Journal of Experimental Education, 74, 267–
https://doi.org/10.1097/NCC.0b013e31823335a1. 288. https://doi.org/10.3200/JEXE.74.3.267-288.
Kline, R. B. (2011). Principles and practice of structural equation model- Smith-DiJulio, K., Windsor, C. & Anderson, D. (2010). The shaping
ing. New York, NY: Guilford Press. of midlife women’s views of health and health behaviors. Quali-
Laliberte Rudman, D. (2010). Occupational terminology: Occupa- tative Health Research, 20, 966–976.
tional possibilities. Journal of Occupational Science, 17, 55–59. Sviden, G. A., Tham, K. & Borell, L. (2010). Involvement in every-
https://doi.org/10.1080/14427591.2010.9686673. day life for people with a life threatening illness. Palliative &
Larsen, R. (2011). Missing data imputation versus full information Supportive Care, 8, 345.
maximum likelihood with second-level dependencies. Structural Tyler, M. (2004). Managing between the sheets: Lifestyle magazines
Equation Modeling: A Multidisciplinary Journal, 18, 649–662. and the management of sexuality in everyday life. Sexualities, 7,
https://doi.org/10.1080/10705511.2011.607721. 81–106. https://doi.org/10.1177/1363460704040144.

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162 M. PERGOLOTTI ET AL.

Appendix I Please circle the number that corresponds to your

level of CONFIDENCE (1 = Very Little, 5 = Quite A
Activity expectations Lot) with each one.
Instructions: The following items ask you to consider
someone your age and with your particular cancer diag- How much CONFIDENCE do you have. . .
nosis, and determine whether you believe that they
should be doing certain types of activities. These activ- Very Little ↔
ity types are groupings of activities presented in the Quite A Lot
MAPA questionnaire you just completed. To help you
understand each type of activity, there are specific Doing creative activities (e.g. crafts/hobbies, 1 2 3 4 5
examples listed in parentheses. cultural activities)
Please circle the number that corresponds to how Doing spiritual activities (e.g. prayer/ 1 2 3 4 5
much you BELIEVE (1 = Very Little, 5 = Quite A Lot) meditation, religious activities)
that a person of your age and diagnosis SHOULD be Getting around town (e.g. driving, using 1 2 3 4 5
involved with each type of activity. public transportation)
Doing physical exercise 1 2 3 4 5
Doing service activities (e.g. volunteer 1 2 3 4 5
How much do you BELIEVE that a person of your age and activities, community organisation activities)
diagnosis SHOULD BE. . .

Very Little ↔
Quite A Lot Appendix II
Doing creative activities (e.g. crafts/hobbies, 1 2 3 4 5 The Possibilities for Activity Scale – Women
cultural activities) (PActS-W)
Doing spiritual activities (e.g. prayer/ 1 2 3 4 5 Instructions: The following items ask you to consider
meditation, religious activities) someone your age and with your particular cancer diag-
Getting around town (e.g. driving, using 1 2 3 4 5 nosis, and determine whether you believe that they
public transportation) should be doing certain types of activities. To help you
Communicating with others (e.g. writing 1 2 3 4 5 understand each type of activity, there are specific
letters/cards, talking on the telephone, examples listed in parentheses.
computer use for email) Please circle the number that corresponds to how
Doing physical exercise 1 2 3 4 5 much you BELIEVE (1 = Very Little, 5 = Quite A Lot)
Keeping up with traditional media (e.g. 1 2 3 4 5 that a person of your age and diagnosis SHOULD be
listening to the radio, watching TV, reading involved with each type of activity.
newspapers and magazines)
Activity expectations
Doing service activities (e.g. volunteer 1 2 3 4 5
activities, community organisation activities)
How much do you BELIEVE that a person of your age and
diagnosis SHOULD BE. . .

Activity self-efficacy Very Little ↔

Instructions: The items below ask you to rate how Quite A Lot
much confidence you have doing types of activities.
These activity types are groupings of activities pre- Getting around town (e.g. driving, using 1 2 3 4 5
sented in the MAPA questionnaire you just com- public transportation)
pleted. To help you understand each type of activity, Doing physical exercise 1 2 3 4 5
there are specific examples listed in parentheses. Doing service activities (e.g. volunteer 1 2 3 4 5
These items are not about what you are supposed to activities, community organisation activities)
do, but how much confidence you have that you can Engaging in sexual activities 1 2 3 4 5
do them, regardless of whether you actually do the Working and/or doing household 1 2 3 4 5
activities. For example, even though you may not be activities
involved in creative activities at this time, we would
Taking care of others 1 2 3 4 5
like to know how much confidence you have that you
can do them.

© 2018 Occupational Therapy Australia

PACTS FOR WOMEN 163

The Possibilities for Activity Scale – Women

(PActS-W) How much CONFIDENCE do you have. . .
Instructions: The items below ask you to rate how
much confidence you have doing types of activities. Very Little ↔
These items are not about what you are supposed to Quite A Lot
do, but how much confidence you have that you can do
them, regardless of whether you actually do the activi- Getting around town (e.g. driving, using 1 2 3 4 5
ties. For example, even though you may not be involved public transportation)
in creative activities at this time, we would like to know Doing physical exercise 1 2 3 4 5
how much confidence you have that you can do them. Doing service activities (e.g. volunteer 1 2 3 4 5
Please circle the number that corresponds to your activities, community organisation activities)
level of CONFIDENCE (1 = Very Little, 5 = Quite A Engaging in sexual activities 1 2 3 4 5
Lot) with each one. Working and/or doing household 1 2 3 4 5
Activity self-efficacy
activities
Taking care of others 1 2 3 4 5

© 2018 Occupational Therapy Australia