PSYCHOSOCIAL TOPIC:

Gender and Interpersonal Relationships in Cystic Fibrosis L Gee, J Abbott, S P Conway, C Etherington and A K Webb

INTRODUCTION

Because of the extended life expectancy of people with cystic fibrosis (PWCF), the issues that affect them have changed. One issue is the changes in interpersonal relationships brought about by adulthood and how men and women cope with this aspect of life alongside their disease.

For a person entering adulthood the emphasis changes from dependency on parents to increased independence and relationships outside the home in terms of friendships and intimate relationships. However, there are aspects of CF that potentially make these transitions more difficult and complex than for most people. These are related to limitations brought about by a progressive disease and the associated heavy treatment regimen. Research suggests that with regard to the progression of CF women fare worse than men^1,2. In the health psychology literature, there is also evidence that females respond differently to ill health by comparison to males. For example, women report higher levels of physical disease, greater pain and more subjective or emotional symptoms than men^3,4,5. Women are more likely to perceive physical symptoms and act on them by comparison to men⁴.

Up until the age of 20 years CF women have a lower mortality rate of approximately 4 years less than males¹. After the age of 20, survival becomes the same for men and women. A higher percentage of men experience infertility because of their CF by comparison to women, with almost all men being sterile⁶. In women, although the fertility prospects are better than those of men they remain variable, whilst the course of pregnancy can profoundly affect pulmonary function^7,8,9. CF has also been shown to bring about delayed puberty¹⁰. Continued antibiotic use in women can be associated with vaginal candidas⁶, which in turn has the potential to affect sexual relationships. In addition, concerns regarding sexual functioning may promote the potential for intimacy to be interrupted by symptoms such as coughing and breathlessness⁷.

“All of these factors can affect the body image of PWCF.”

PWCF generally experience lowered body weight and small stature alongside other external physical features such as barrel chest and clubbed fingers, and treatment related features such as insertion of intravenous devices and gastrostomies can also present problems. All of these factors can affect the body image of PWCF. There is also the additional pressure of having to tell a partner that they have CF and the difficulties that this may engender with regard to fears of rejection⁷.

Previous research looking at the impact of CF on relationships has shown mixed results regarding the number of CF people who have achieved an independent life and initiated relationships. Some estimates for having established an intimate relationship are as low as 32% whilst others maintain that up to 84% of CF adults are either married or co-habiting^11,12. A more recent study looking at women with CF led to the conclusion that generally women felt socially accepted, and that delayed puberty was not shown to be a source of distress¹⁰. Furthermore, the majority of women in the study had been able to establish relationships as adults.

The present study focused on the impact of CF across a range of issues related to inter-personal relationships and sexual functioning. This was approached in a bid to determine whether men and women differed in their self-reported difficulties and which issues were especially problematic for men and women with CF.

 

METHOD

Assessment of Aspects of Interpersonal Relationships
Relationship issues were assessed using 11 items taken from the Cystic Fibrosis Quality of Life Questionnaire (CFQoL)¹³. Ten of the items were from the Interpersonal Relationships section of the questionnaire whilst one was from the Concerns For the Future section. The items were as follows:

1. Establishing new relationships / friendships is difficult because of my CF.
2. I find that my friends don't always understand the limits that CF places on me.
3. My CF makes it difficult for me to establish intimate relationships.
4. My CF makes it difficult for me to maintain intimate relationships.
5. I find that my CF interferes with me having a satisfactory sex life.
6. I find that CF makes me feel different from other people my own age.
7. My CF makes me feel isolated from other people.
8. I am concerned that my CF is stressful for those who are close to me.
9. I worry that, because of CF, I will never be able to lead an independent life.
10. The way in which CF affects my relationships with other people interferes with my quality of life by making life less enjoyable.
11. It concerns me that I may not be able to have / have more children.

Items are scored on a 6 point scale with 1 = strongly agree and 6 = strongly disagree. Scores of 3 or less indicate that the individual is experiencing a problem with the issue reflected by the particular item.

Participants
The total sample who completed the items was 223 adolescents and adults with CF from two specialist CF units in Manchester and Leeds in the UK. Of these, 102 were men with an average age of 25.5 years (range 16-46), an average percentage of predicted FEV₁ of 58% (range 12%-112%) and an average body mass index (BMI) of 21.1 (range 15.9-30.3). One hundred and twenty two women took part in the study; they had an average age of 24.8 years (range 14-52), an average percentage of predicted FEV₁ of 58% (range 16%-118%) and an average BMI of 20.5 (range 15.5-30.2).

Procedure
The CFQoL questionnaire was given to patients when they attended a routine outpatients appointment. Return of questionnaires was via postal means. This method was chosen to minimise disruption to patients at clinic and to the running of the clinics. It was also felt that this method would give the patients time to reflect on whether they wanted to participate in the study and would remove the pressure inherent in a face-to-face request.

Clinical and demographic data for sex, age, FEV₁ and BMI were routinely assessed for all patients on the day they attended clinic. A pre-paid envelope was included for all patients to return the questionnaires. Patients were instructed to return their questionnaires as soon as possible after the clinic appointment - preferably within a few days. The date of the outpatient appointment was recorded and patients were asked to also record the date they completed the questionnaire. All questionnaires included in the study were returned within a week of distribution. Data collection was continuous for a period of 6 months.

Results
With regard to the differences between males and females, the following results emerged:

• There were no differences between men and women for either age or percentage of predicted FEV₁.
• There was a significant difference between men and women for BMI with men having a higher BMI than females.
• There were only 3 differences between men and women across the 11 interpersonal relationships items that were included in the study. These were for the items:

‘My CF makes it difficult for me to establish intimate relationships’

‘CF makes it difficult for me to maintain intimate relationships’

‘I am concerned that my CF is stressful for those who are close to me’

• For the 2 items related to establishing and maintaining relationships, scores were lower for men indicating that men have greater difficulties with these 2 aspects of interpersonal relationships.
• For the item reflecting concern for those close to the PWCF, women’s scores were lower indicating that women had greater difficulties with this aspect of interpersonal relationships.

The percentage of respondents scoring 3 or less across each of the items is shown in Table 1. A score of 3 or less indicates that the person is expressing problems with that particular item. For the vast majority of items, between 25% and 35% of men and women reported having trouble with a particular issue as a direct consequence of their CF.

* Particularly high percentages of both men and women reported difficulties across the items reflecting:

1. A lack of understanding from friends about the demands of CF.
2. Feeling different from peers.
3. Concerns that CF is stressful for close companions.
4. Worries about future fertility.

 

Table 1
Percentage of men and women expressing difficulties across each of the 11 interpersonal relationship items.

______________________________________________________
Item	% men	% women
______________________________________________________
Establishing new relationships / friendships is difficult because of CF	35.3	34.7
I find that my friends don’t always understand the limits my CF places on me	60.8	63.6
My CF makes it difficult for me to establish intimate relationships	35.3	24.8
My CF makes it difficult for me to maintain intimate relationships	34.3	21.5
I find that my CF interferes with me having a satisfactory sex life	30.4	25.7
I find that my CF makes me feel different from other people my own age	57.8	57.8
My CF makes me feel isolated from other people	31.4	27.3
I am concerned that my CF is stressful for those who are close to me	67.6	86.8
I worry that because of CF I will never be able to lead an independent life	26.5	33.0
The way in which CF affects my relationships with other people interferes with my quality of life by making it less enjoyable	24.5	24.0
It concerns me that I may not be able to have / have more children	71.6	72.7
______________________________________________________

Discussion
For most of the interpersonal relationship concerns included in the study, there were no differences in scores between men and women. This was with 3 exceptions; establishing and maintaining intimate relationships and concerns that their CF places stress on people who are close to them. With regard to the issue of establishing and maintaining relationships, men fared worse than women and expressed more difficulties. It is uncertain what these differences are linked to, but issues around fertility, appearance and body image may be related. A qualitative study involving a small sample of Swedish women FEV¹⁰, detailed how women in the study avoided developing intimate relationships during their adolescence. Two issues they cited were fertility and fear of rejection following disclosure of their disease.

“…angry about their fertility and blamed themselves for it.”

It is possible that men also have the same issues, but are affected more by them. Glover et al (1996) ¹⁴, found that infertile males attending a sub-fertility clinic felt that they were “less of a man”. They felt angry about their fertility and blamed themselves for it. Expression of similar attitudes was found by Sawyer et al (1998) ¹⁵ in her study of men with CF. Fair et al (2000)¹⁶, found that for CF men, having a child at some point in their lives was important to them. However, 25% maintained that they were not bothered by their infertility.

With regard to the issue that impaired body image may impact on establishing and maintaining relationships, Willis and colleagues (2001)¹⁷; maintain that with regard to body image men and women are represented differently in society. Men have an image that is based on an expectation within society to have a presence, which reflects the power that they embody, whilst women have an image of attractiveness. This is supported by social role models that idealise slim physiques in women and whilst men are stronger and more muscular. In CF males, this goes against the norm as the majority of them are underweight and have small stature because of their CF.

“…young women with CF tended to overestimate their weight…”

Previous research has demonstrated that by comparison to non-CF controls women with CF were happier with their shape. However, CF men desired to be heavier than they were at present, and interestingly their own prediction of their current weight was heavier than they actually were ¹⁸. A study by Walters (2001)¹⁹, found that whilst young women with CF tended to overestimate their weight, CF men tended to underestimate their weight when compared to perceived body weight. Therefore, in this study young men had a perception of being underweight, which may serve to reinforce feelings of non-masculinity.

“…women are more likely not to discuss their disease with close companions out of consideration for their feelings.”

The third item across which men and women differed reflected a concern that CF may be stressful for people that are close to them. Women scored lower than men indicating that they have more concerns about this aspect of interpersonal relationships than men. Social support has been shown to be a good predictor of psychological functioning ²⁰. It has also been demonstrated in the past that 86% of CF adults find little outlet for discussing their feelings about their disease ²¹. This could lead to situations were misconceptions arise about the concerns of close companions. Despite the time period between this study and the current data, it is interesting that the 86% referred to is comparative to the number of women in this study expressing concerns regarding their disease placing stress on those who are close to them. It may be the case that women are more likely not to discuss their disease with close companions out of consideration for their feelings.

“…lack of understanding from friends about the demands CF places on the individual…”

 

For the majority of items, 25% to 35% of men and women expressed difficulties in interpersonal relationships as a direct result of their CF. This indicated that for all issues explored a quarter to two thirds of individuals find aspects of interpersonal relationships problematic because of CF. However, the reverse of this is that between 75% to 65% don’t experience difficulties in interpersonal relationships. Overall, 75% indicated that the difficulties they experience with interpersonal relationships do not make their quality of life worse. The highest levels of difficulties were expressed for items reflecting a lack of understanding from friends about the demands CF places on the individual, i.e. feeling different from peers, a concern that CF is stressful for those close the CF person and concerns regarding fertility. Perhaps it is the case that even though high percentages of individuals do express particular difficulties with these issues, other things in life compensate for them.

Conclusion
With regard to interventions aimed at helping people with CF who express difficulties with the issues raised, it is important that this is approached from a multi-disciplinary perspective. This includes support with relationship issues for both the person with CF and their family from a psychosocial perspective and applying advances in medicine to optimise the potential to reproduce as successfully and safely as possible.

“…why the issues highlighted in the current study are problematic.”

The present study simply quantifies how many men and women express difficulties with certain issues related to interpersonal relationships and whether there are any differences between men and women across these concerns. What the study does not do is explicitly examine why these issues are problematic so this can only be speculated upon. Future research should be aimed at establishing qualitative studies that try and determine why the issues highlighted in the current study are problematic. These studies should explore in more depth the dynamics of these concerns and how PWCF feel that support with these issues can be effectively applied.

L Gee PhD, D Clin Psy – Department of Nursing, Faculty of Health, University of Central Lancashire, UK
J Abbott, PhD – Department of Nursing, Faculty of Health, University of Central Lancashire, UK
S P Conway, FRCP – Adult CF Unit, Seacroft Hospital, Leeds, UK
C Etherington, MB, ChB – Adult CF Unit, Seacroft Hospital, Leeds, UK
A K Webb, FRCP – Adult CF Unit, Wythenshawe Hospital, Manchester, UK

Correspondence to:

Professor J. Abbott, Department of Nursing, Faculty of Health, Greenbank Building, University of Central Lancashire, Preston, PR1 2HE, UK
e-mail jabbott@uclan.ac.uk.

Editor’s Note: For a list of references please contact us: editor@cfww.org