Sexuality in Relation to Independence in Daily Functions Among Young People with Spina Bifida Living in Israel

Authors

  • Levana Shoshan BA RN,

  • Dvora Ben-Zvi MS RN,

  • Shirley Meyer MD,

  • Michal Katz-Leurer PhD

Errata

This article is corrected by:

  1. Errata: Errata Volume 37, Issue 2, 94, Article first published online: 20 March 2012

Abstract

Purpose

To describe the basic knowledge of body anatomy and functioning, and the sexual knowledge of young adults with spina bifida (SB) and to investigate the associations between independence in daily functions and communication skills on the one hand and sexual knowledge and activity on the other among young people with SB.

Methods

Twenty-five patients with SB over the age of 16 years, who are under follow-up at the Alyn Children's Rehabilitation Hospital in Jerusalem, Israel, were enrolled in the study. Each patient was interviewed individually using the Sexual Knowledge Interview Schedule and the Functional Independence Measure.

Findings

There were 17 females and eight males aged 16–35 years, eight of the 25 with a lesion level of L2 and above. At the time of the interview three of the participants had a partner (12%) and seven (28%) indicated that they had had intimate sexual relationships. One subject answered correctly on all questions related to body anatomy, and seven answered correctly on all questions related to body part functions. Positive and significant associations were noted between motor abilities, sphincter management and sexual knowledge (rp 0.44–0.65). Knowledge of anatomy and function associated positively with sexual knowledge and experience (rp 0.48–0.59).

Conclusion

Young adults with SB who live in Israel exhibit a relatively low level of sexual experience. Since knowledge is associated with sexuality, it would be reasonable therefore to provide a structured educational program for this group of young adults, targeted to their unique disability.

Clinical Relevance

The rehabilitation nurse is in an optimal position to provide such education given her specialized training in sphincter management and her ongoing holistic view of these young patients.

Introduction

In general, for adolescents and young adults, interaction with peers, social activities, and developing intimate and sexual relationships are important aspects of social maturation and normal development. Physical and cognitive impairments can interfere with this normal process of discovery and development, and sexual maturation is likely to be more complicated (Börjeson & Lagergren, 1990). Studies have noted that young adults with severe and notable disabilities tend to have a poorer body image and lower emotional well-being (Shields 2008); they tend to experience lower social integration and have poorer psychosocial functioning such as dating (Wiegerink 2006). With the growing life expectancy of spina bifida (SB) patients, problems associated with growth to maturity are more prominent (Bowman, McLone, Grant, Tomita, & Ito, 2001; Hunt, 1999). An important goal of rehabilitation for individuals with SB is to improve their integration into society, in which social and sexual relationships play an important role.

The rehabilitation nurse in the clinical setting plays a critical role in the ongoing rehabilitation process of children and young adults with SB. Of her numerous roles in the process, teaching sphincter management is one of the more important roles. Discussions on sphincter management often naturally invite questions on sexuality and sexual function and as such the discussion should be openly encouraged and expanded. The rehabilitation nurse should therefore be trained to deal with these situations and be able to promote further education.

Several studies have been published on sex education in patients with SB (Cromer et al., 1990; Sander 1994, Verhoef et al., 2005). These studies showed that the majority of patients do receive sex education of some sort. The possible impact of cognitive and physical limitations on relationships and sex life has also been assessed. Studies have described that adolescents with severe and visible disabilities tend to have poorer psychosocial functioning in areas such as independence, dating, and sexual relationships (Orr, Weller, Satterwhite, & Pless, 1984). It has been found that the two most common concerns about having an intimate relationship are incontinence and physical disability in general (Sawyer & Roberts, 1999). Some decades ago, Cass, Bloom, and Luxenberg (1986) found that only 2 of 12 young men and 11 of 35 young women aged 16–39 years did not engage in some form of sexual activity. In more recent publications, Lassmann, Garibay Gonzalez, Melchionni, Pasquariello, and Snyder (2007) found that of 76 patients aged 18–37 years, 18 (24%), including nine women and nine men, experienced sexual intercourse at least once in the previous 2 months. Verhoef et al. (2005) described that 65% of 157 patients with SB aged 16–25 years had been sexually active and half of the patients were satisfied with their sex life.

Although having received sex education, little is known about the actual individual knowledge of young adults with SB. Nor are we aware if there is any association between cognitive and physical limitations and sexual knowledge. These aspects have not been examined in-depth in the literature.

This work describes young adults living in Israel, where the prevalence of SB is particularly high amongst the more religious populations (Zlotogora, Amitai, Kaluski, & Leventhal, 2002). In Israel, the law authorizes abortions for major fetal malformations, subject to the decision of a hospital committee. However, this option is often not compatible with the parent's religion. According to Jewish law, abortion is allowed only within the first 40 days of pregnancy; according to Islamic law, abortions are either not permitted or are allowed only within the first 120 days (Zlotogora & Reshef, 1998). Thus, among religious sub-groups, abortion is often not an option and consequently, SB prevalence is remarkably high amongst these groups. In conjunction with this, it has been noted before that there is an association between the family's religious principles and sexual behavior of the offspring as for example, a much later timing of sexual initiation (Manlove, Terry-Humen, Ikramullah, & Moore, 2006).

The first aim of the present study was to describe the basic knowledge of body anatomy and functioning, and the sexual knowledge of young adults with SB. The second aim was to investigate the associations between independence in daily functions and communication skills on the one hand, and sexual knowledge and activity on the other, among young people with SB.

Methods

Participants

Twenty-five patients with SB who were outpatients at the Alyn Children's Rehabilitation Hospital in Jerusalem, Israel, were approached when they came for their annual follow-up appointment at the SB multidisciplinary clinic. The participants were chosen during the period between August and December 2009, and they fulfilled the following criteria: more than 16 years of age and being independent in communication skills as assessed by the communication sub-scale of the Functional Independent measure. Communication scores; comprehension and expression items with a score ≥6 meaning that the patient does not need help in understanding or expression.

Procedures

Ethical approval was obtained through the Human Research Ethics Committee of the hospital and the Health Ministry of Israel. All participants gave informed consent before participation.

This was a cross-sectional analytic study. Data on medical history were gathered from the medical records, including level of lesion, hydrocephalus, and shunt status. Patients filled out the questionnaire and were then interviewed by a nurse (L.S.) with special expertise in continence management and sex education.

Instruments

The first part of the questionnaire included personal details such as gender, age, weight, height, and years of education.

Each patient was interviewed individually using the Sexual Knowledge Interview Schedule (SKIS) (Forchuk & Martin, 1989). This is a structured interview instrument, which includes questions targeted to assess basic knowledge of body parts (11 questions), functioning (9 questions), and sexual knowledge and experience (9 questions). The instrument also includes four questions dealing with understanding nonverbal communication, and another question which asks the interviewee to classify himself/herself as a child or adult. The majority of questions have multiple answers with only one correct answer, while others have some correct or possible answers. Each section is scored separately. Interrater reliability was (= .95); test–retest reliability was (r = .7); and the internal consistency, using Cronbach's Alpha, was >.90 (Forchuk, Martin, & Griffiths, 1995).

The Functional Independence Measure (FIM) (Keith, Granger, Hamilton, & Sherwin, 1987) was used to describe the degree of independence in activities of daily living. The FIM consists of 18 items in six domains of physical and cognitive functioning: self-care, sphincter control, transfers, locomotion (FIM motor score), communication, and social cognition (FIM cognition score). Each item is scored on a 7-point scale (Maynard et al., 1997) varying from “complete independence” (level 7) to “total assistance” (level 1). The FIM can be used as an observational instrument or as a questionnaire with a very strong correlation between both scores (Karamehmetoglu et al., 1997). In the present study, the FIM items were rated based on the questionnaire supplemented by information from the participants.

Data analysis

Demographic and medical characteristics are presented in Table 1. Associations between SKIS components and SKIS and FIM subscale were assessed by the Pearson correlation coefficient (rp). In addition, differences in SKIS scores distribution in relation to self-identification (as child, adult or both) were subjected to the Kruskal–Wallis test. Results were considered statistically significant at a confidence level p ≤ .05. Data were analyzed using a SPSS-v.12 statistical package (SPSS Inc., Chicago, IL).

Table 1. Patients’ Characteristics
 N = 25
  1. Values are mean ± SD/frequency (percentage).

Gender
Male8 (32)
Female17 (68)
Age (years)24 ± 6
Family status
Single23 (92)
Married2 (8)
Religious13 (52)
Living with
Parents22 (88)
Partner3 (12)
Lesion level
L2 and above8 (32)
L3–516 (64)
S1 and below1 (4)
Hydrocephalus14 (56)

Results

Twenty-five patients participated in this study; there were 17 females and 8 males aged 16–35 years, 12 were secular, 8 with a lesion level of L2 and above, one with a lesion level of S1 and 16 were L3–5 (Table 1). All patients reported that they had received sex education. At the time of interview, three of the participants had a partner (12%) and seven patients (28%) indicated that they had had intimate sexual relationships in the past, non of them was religious. One subject answered correctly on all questions relating to body anatomy, and seven answered correctly on all questions relating to body part functions, only one of them was religious (Table 2).

Table 2. Sexual Knowledge and Functional Independence Among the Participants
CharacteristicsN = 25
  1. N, total number of participants.

  2. Values are mean ± SD/frequency (percentage).

Sexual Knowledge Interview Schedule
Understanding non verbal communication (out of 4 points)3.9 ± 0.2
Body parts recognition (11 questions)6.4 ± 2.5
Functioning (9 questions)7.1 ± 1.6
Sexual knowledge and experience (9 questions)5.6 ± 2.7
Ever being sexually active7 (28)
Self classification
Adult13
Child5
Both6
Functional Independence Measure
Self care (out of 42 points)40.1 ± 3.4
Sphincter control (out of 14 points)12.5 ± 0.5
Transfers (out of 21 points)19.2 ± 2.8
Locomotion (out of 14 points)11.2 ± 2.4
Total motor score (out of 91 points)83.1 ± 6.7
Total communication and social cognition score (out of 35 points)34.9 ± 0.2
Total score (out of 126 points)118.8 ± 5.7

A positive and significant association was noted between motor abilities, particularly locomotion, and body anatomy and sexual knowledge (rp .44–.65) (Table 3). A significant moderately strong positive association was noted between incontinence management and sexual knowledge and experience (rp .44) (Table 3). Knowledge of body anatomy and functioning was associated positively with sexual knowledge and experience (rp .48–.59) (Table 4). No association was noted between sphincter management and body parts recognition and functioning (Table 3). No associations were noted between the communication and social cognition score and body anatomy and functioning or sexual knowledge and experience (Table 3).

Table 3. Pearson Correlations Between SKIS and FIM Scores
 Self CareSphincter ControlTransfersLocomotionTotal MotorTotal Communication and Social CognitionTotal Score
  1. a

    p < .05,

  2. b

    p < .01.

Understanding nonverbal communication−0.16−0.01−0.180.09−0.12−0.06−0.11
Body parts recognition0.180.270.210.65b0.44a−0.370.50a
Body parts functioning0.370.030.49a0.52b0.59b0.030.62b
Sexual knowledge and experience0.140.44a0.48a0.57b0.52a−0.110.70b
Table 4. Associations Between SIKS Items
 Sexual Knowledge and ExperienceBody Parts FunctioningBody Parts RecognitionUnderstanding Nonverbal Communication
  1. a

    p < .05,

  2. b

    p < .01.

Understanding nonverbal communication0.15−0.51aa0.411.00
Body parts recognition0.59b0.201.00 
Body parts functioning0.48a1.00  
Sexual knowledge and experience1.00   

Five of the participants described themselves as “a child,” 13 as “adults,” and 7 of them felt that they are both “a child and adult” (Table 5), while the chronological age was not significantly different among these three groups (age range 17–20, 20–26, and 21–35 years, respectively). The sexual knowledge, motor and functional abilities of these three groups were statistically significantly different. Those who felt like a child were more dependent as compared with the others and none of them had had sexual relationships.

Table 5. Sample Characteristics by Self Definition
 Child and Adult (N = 7)Adult (N = 13)Child (N = 5)p value
  1. Values in the table are medians [interquartile range].

  2. *p value based on Kruskal–Wallis test.

Age (years)30 [21–35]23 [20–26]20 [17–20].11
Gender male341.55
Understanding nonverbal communication (out of 4 points)4.0 [3.0–4.0]4.0 [4.0–4.0]4.0 [4.0–4.0].04
Body parts recognition (11 questions)8.0 [4.0–9.0]8.0 [5.0–8.0]4.0 [2.5–6.0].08
Functioning (9 questions)9.0 [8.0–9.0]8.0 [6.5–9.0]6.0 [4.0–6.5].01
Sexual knowledge and experience (9 questions)8.0 [4.0–9.0]6.0 [3.0–8.0]3.0 [0.0–5.0].02
Self care (out of 42 points)42.0 [42.0–42.0]42.0 [41.0–42.0]38.0 [30.5–40.0]<.01
Sphincter control (out of 14 points)13.0 [12.0–13.2]12.0 [12.0–13.0]12.0 [12.0–12.0].07
Transfers (out of 21 points)21.0 [20.0–21.0]21.0 [18.0–21.0]16.0 [11.5–19.5].05
Locomotion (out of 14 points)12.0 [12.0–14.0]12.0 [10.0–12.5]12.0 [7.0–12.0].33
Total motor score (out of 91 points)87.0 [84.0–90.0]84.0 [83.0–86.0]78.0 [63.5–81.0]<.01
Total communication and social cognition score (out of 35 points)35.0 [35.0–35.0]35.0 [35.0–35.0]35.0 [35.0–35.0]1.00
Total score (out of 126 points)122.0 [120.0–125.0]119.0 [118.0–121.5]113.5 [101.0–117.0].01

Discussion

Twenty-five young adults with SB participated in this study. All of them were exposed to some form of sex education, but their actual knowledge of body anatomy and functions and sexual knowledge was found lacking. Seven of them (28%) were or had been sexually active; at the time of survey, only three were currently sexually active and lived with a partner.

The sexually active percentage in our study (8%) is lower than that in other studies, as is the percentage of those who had had sexual relationships (28%). Verhoef et al. (2004) described that most adolescents with SB in the Netherlands (65%) indicated that they had been sexually active at some time. Lassmann et al. (2007) of Philadelphia reported that 24% of their study participants were sexually active at the time of the survey. The lower percentage in our study is more surprising as according to Decter et al. (1997), a higher level of physical ability is associated with a higher sexual function, and our group of subjects exhibited a high mean FIM score. One of the possible explanations is the demographic structure of our study group. This work presents young adults living in Israel, where the prevalence of SB is particularly high amongst the religious population. The higher prevalence is probably due to a combination of genetic factors together with environmental and cultural factors (Zlotogora et al., 2002).

In this study, more than 80% of the participants lived with their parents, the association between living with parents and not being sexually active has been described before. Lassmann et al. (2007) found that 88% of nonsexually active young adults with SB lived with relatives as compared to 67% of the sexually active. Living with a relative might be related to the level of independence. As stated before, our participants exhibited a high mean FIM score. This would suggest that in Israel, the level of sexual activity is less related to functional abilities, but is rather associated with cultural and religious issues. Regardless of functional abilities, living alone or with a friend is unacceptable in these religious sectors where children leave their parent's house only when they get married.

A positive association was noted between knowledge of body anatomy and function, and having sexual relationships. These findings are consistent with previous works (Verhoef 2006). These repeated findings stress the importance of sex education for children with SB. Although in Israel sex education is provided in all educational settings around the age of 12 years, it might be that in the more religious educational system, the information given on these topics is incomplete. In fact, during the interviews, some of the young adults stated that full knowledge on these topics would be provided only when they get married. Integration of a religious authority to approve a more appropriate program for children and young adults with SB should improve the situation. However, even so, the limiting factor(s) may continue to be on religious grounds.

The known relationship between independence and sexual experience was also found in this study. Functional independence was assessed by the FIM, which is a standardized outcome instrument, well validated and often used. However, the advantages and disadvantages of the tool should be kept in mind. For example, few patients were rated as independent for bowel and bladder management, which might be due to the nature of the sphincter control items of the FIM. It might be inferred that the FIM score for this domain reflects continence rather than independence for bladder and bowel control. In addition, the FIM lacks the distinction between mobility in a wheelchair and walking with other aids. Woodhouse (1994) pointed out that people with SB who are able to walk are more likely to be sexually active as compared with people with SB who use a wheelchair. It is reasonable to speculate that the true association between independence, motor abilities and sexual experience is even stronger than presented.

Five of the participants described themselves as “a child” (age 17–20 years), 13 as “adults” (age 20–26 years), and seven of them felt that they are both “child and adult” (age 21–35 years). The sexual knowledge, motor and functional abilities of these groups were statistically significantly different. Those who felt like a child were more dependent as compared with the other groups, and none of them had ever had a sexual relationship. Possibly, the combination of being dependent and less sexually active induces a feeling of being a child.

This study has some limitations. The participants in our study attend the SB multidisciplinary follow-up clinic. Therefore, the sample might represent a more severe group of subjects who need more regular follow-ups or, on the other hand, a group that seeks treatment and problem solving, thereby representing a well-treated group; both conditions might bias the true situation of SB patients in Israel. In addition, instead of using a self-reported questionnaire, we chose to interview the participants, which may in turn influence the answers given, as possibly this topic causes embarrassment especially for children from religious families. An additional limitation of our study is its external validity. As the majority of SB patients in Israel are from the religious sectors and have certain cultural limitations, it might be more pertinent to study these issues in-depth.

Implications for the Rehabilitation Nurse

The findings of this study highlight the lack of basic knowledge of body parts and functioning, as well as a lack of basic sexual knowledge, among young adults with SB. It seems that a specific sex education program is needed for these young adults appropriate to their special needs and their physical, emotional, and perception abilities. The rehabilitation nurse is in an optimal position to provide such education, given her ongoing relationship with these young patients and her holistic view—that sexuality is an important part of everyday life and a critical component of self-identity (Nye 1999).

A positive association was noted between knowledge of body anatomy and function, and having sexual relationships. These findings are consistent with previous works (Verhoef 2006). These repeated findings stress the importance of sex education for children with SB. It is important to raise issues relating to relationships, sexuality, unwanted sexual contact, fertility, and genetic implications.

In conclusion, young adults with SB who live in Israel exhibit a lower percentage of sexual experience as compared with reports in the literature. In addition, the level of knowledge was also lacking, despite having received some form of education. It seems reasonable therefore to establish a more structured educational program for this group of young adults, targeted toward their unique disability, while taking cultural and religious issues into account. These conclusions may well be relevant for other specific cultural groups, not as-yet specified in the literature.

Key Practice Points

  • In Israel, the prevalence of Spina Bifida is particularly high amongst the more religious populations.
  • Young adults with Spina Bifida who live in Israel exhibit a lower percentage of sexual experience as compared to reports in the literature.
  • Positive association exists between independence, knowledge of body anatomy and function and sexual experience among young adults with spina bifida.
  • A structured educational program is needed for these young adults targeted to their unique disability, while taking cultural and religious issues into account.

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Questions:

  1. In young adults with Spina Bifida the relationship between independence in daily functions and being sexually active is:
    1. Positive
    2. Inverse
    3. Non-existent
    4. Functional
  2. The higher incidence of Spina Bifida in religious populations is related to:
    1. Environmental factors
    2. Cultural factors
    3. Genetic factors
    4. All of the above
  3. The reason discussion of sexuality in the Spina Bifida population is becoming more prevalent in the professional literature is:
    1. the widespread use of the internet
    2. the improved life span of individuals with Spina Bifida
    3. Advances in the field of sex education
    4. Increased availability of research tools.
  4. In the author's opinion the rehabilitation nurse is the preferred rehabilitation team professional to provide sex and sexuality education and guidance. This is because of:
    1. The rest of the team's lack of knowledge.
    2. The nurse rarely sees the client.
    3. The nurse's role of treating and promoting independence in continence self- care.
    4. The rest of the team has failed to provide this education and guidance.
  5. For sexual education for young adults with Spina Bifida to be effective the following statements are true except:
    1. Education must be given at the correct age
    2. Education should include general counseling on how to interact with the opposite sex.
    3. Anatomy of the reproductive organs should be included.
    4. Physiology of the reproductive organs should be included.
  6. The SKIS questionnaire provides information about the subjects’:
    1. Knowledge of body parts and sexual experience.
    2. Detailed sexual experience and their attitude towards sex and sexuality.
    3. Sexual experience, understanding of non-verbal communication and their attitude towards sex and sexuality.
    4. Knowledge of body parts, sexual experience, understanding of non-verbal communication and perception of maturity.
  7. Studies show that the percentage of adults with Spina Bifida that are sexually active young at the time of the study is less than:
    1. 24%
    2. 28%
    3. 65%
    4. 80%
  8. In this study how many of 25 young adults with Spina Bifida correctly answered all of the questions relating to body part function?
    1. 1
    2. 7
    3. 20
    4. none
  9. Inability to appropriately classify self as an adult or a child was found to be related to:
    1. Disability and sexual inexperience
    2. Age
    3. Age and limited sexual experience
    4. Vast sexual experience
  10. This subject this study questioned was:
    1. Do Spina Bifida children receive sex education?
    2. Young adults with Spina Bifida's attitude toward sex and sexuality.
    3. Young adults with Spina Bifida's knowledge about sex and sexuality.
    4. Are young adults with Spina Bifida sexually active?

Biographies

  • Levana Shoshan, BA RN, is a rehabilitation nurse at the Pediatric and Adolescent Rehabilitation Center, Alyn Hospital, Jerusalem, Israel.

  • Dvora Ben-Zvi, MS RN, is Assistant Director of Nursing at the Pediatric and Adolescent Rehabilitation Center, Alyn Hospital, Jerusalem, Israel.

  • Shirley Meyer, MD, is surgeon in pediatric orthopedics at the Pediatric and Adolescent Rehabilitation Center, Alyn Hospital, Jerusalem, Israel.

  • Michal Katz-Leurer, PhD, is a researcher at the Pediatric and Adolescent Rehabilitation Center, Alyn Hospital, Jerusalem, Israel; and School of Health Professions, Sackler Faculty of Medicine, Tel-Aviv University, Tel Aviv, Israel. Address correspondence to michalkz@post.tau.ac.il.

Ancillary