neural tube defects: part 2

8<br /> Adults Who Have Spina Bifida:<br /> Work and Mental Health<br /> Gregory S. Liptak<br /> Department of Pediatrics, Upstate Medical University,<br /> Syracuse, New York, U.S.A.<br /> <br /> The past is never dead; it’s not even past.<br /> —William Faulkner, Requiem for a Nun,<br /> Act I, Scene iii<br /> <br /> INTRODUCTION<br /> Adults who have spina bifida carry the past with them, both personally and culturally. Their personal past includes their abilities, physical impairments, coping<br /> strategies, and social skills. These affect their well-being and functioning as<br /> adults. As reviewed in earlier chapters of this book, impairments and disabilities<br /> that occur with spina bifida include nonverbal and verbal learning disabilities as<br /> well as problems with attention; and executive function these can affect performance in postsecondary education, employment, communication, and socialization. Adults with spina bifida typically have limited mobility with paraplegia<br /> and may have impaired fine motor skills. They may have problems accessing<br /> transportation. They may have recurrent medical problems such as urinary<br /> tract infection, skin breakdown, and ventricular shunt malfunction that can<br /> limit them from participating in school or work for an extended time. They<br /> may have urinary or fecal incontinence, which can affect social interactions<br /> and self-esteem. For each of these challenges, they possess coping skills, with<br /> some individuals being more resilient than others.<br /> 117<br /> <br /> 118<br /> <br /> Liptak<br /> <br /> In addition, they carry their cultural heritage, which, in many places,<br /> includes diminished opportunities for work or education for individuals who<br /> have disabilities. It may mean limited access to knowledgeable mental health professionals (1) as well as the inability of part-time employees to obtain adequate<br /> health insurance. If a job that they can manage physically (e.g., a part-time<br /> job) does not offer them adequate insurance coverage, they may be better off<br /> financially remaining unemployed and relying on governmental assistance like<br /> Medicaid. The physical and cultural factors that they bring with them to adulthood affect their mental health and well-being as well as their ability to participate in society.<br /> THEORETICAL BASES<br /> The World Health Organization (WHO) has developed a model for evaluating the<br /> impact of health status on the functioning of individuals (2). This conceptual<br /> framework describes and classifies components of health. Functioning is<br /> described as the interaction among three dimensions: body functions/structures,<br /> activity/participation, and environmental/personal factors. Every component is<br /> subdivided into domains that encompass anatomical or physiological systems<br /> (body functions and structures), life areas (activity and participation), and physical, social, and attitudinal environment (environmental and personal factors).<br /> Figure 1 illustrates the ICF model as applied to some issues faced by an adult<br /> with spina bifida. For example, if a child with spina bifida has hydrocephalus<br /> and a small corpus callosum (body function and structure), they will have difficulty understanding mathematics and certain aspects of language, for example,<br /> <br /> Health Condi ti on<br /> Spina bifida with hydrocephalus<br /> <br /> Body Function and Structure<br /> <br /> Activities<br /> <br /> Participation<br /> <br /> Dys genes is of corpus callosum<br /> Ce re bellar abnormalitie s<br /> <br /> Ability to le arn<br /> Exec utive function<br /> <br /> Les s post sec ondary educa tion<br /> Soc ial isola tion<br /> <br /> Neurogenic bowel and bladder<br /> <br /> Social continence<br /> <br /> Abs ence from work<br /> <br /> Environme nt<br /> <br /> Personal Factors<br /> <br /> Opportunitie s for work<br /> Acces s to hea lth and re la te d ca re<br /> Accepta nce of people w ith disabilities<br /> <br /> Ge nder<br /> Age<br /> Temperament<br /> Soc ia l background<br /> <br /> Figure 1 World Health Organization International Classification of Functioning,<br /> Disability, and Health applied to some issues of adults with spina bifida and hydrocephalus. Source: From Ref. 2.<br /> <br /> Adults Who Have Spina Bifida<br /> <br /> 119<br /> <br /> idioms (activities). They likely will not do as well in school, and will not be able<br /> to obtain a rewarding job when they are adults (participation). (This has been<br /> called a chain of adversity.) However, (i) providing remediation (additional<br /> instructional time or different instructional approaches to “fix” a certain area of<br /> weakness and build strength in a particular area to facilitate potential learning)<br /> and compensation [alternative approaches (e.g., assistive technology) to offset, or<br /> counter balance, a learning disability and produce the desired level of performance] in the school, (ii) having parents who help the child with homework<br /> (environment), and (iii) having a child who has a persistent temperament<br /> (personal factor) can ameliorate the adverse effects of the impairments and<br /> lead to better outcomes.<br /> Erikson (3) has argued that an individual has to master certain stages in order<br /> to develop a healthy personality. During elementary school, children need to<br /> develop a sense of industry. During adolescence, the teen develops a sense of identity (the identity crisis). During adulthood, the individual must develop a sense of<br /> intimacy (vs. isolation) and a sense of generativity (typically manifest by having<br /> children). Factors that interfere with the successful resolution of these crises<br /> adversely affect mental health. These issues (crises) do not completely disappear<br /> as the person ages but continue in different manifestations throughout development.<br /> Bandura (4) hypothesized as part of his Social Learning Theory that individuals develop a sense of self-efficacy, which is related to self-concept and selfesteem. This is defined as people’s belief in their ability to successfully perform<br /> specified tasks, expend greater effort, and persevere in the face of adversity. If<br /> people are subjected to repeated failures, for example, people with learning disabilities in a classroom, they may develop the opposite of self-efficacy, which is<br /> learned helplessness. Learned helplessness occurs when individuals believe that<br /> they have no control over a situation. This feeling of helplessness occurs because<br /> of repeated failures in similar situations. It causes individuals to think that they<br /> should not even try, because they believe they will not be successful. Learned<br /> helplessness has been linked to depression (5).<br /> Finally, Evans and Stoddard developed a model to explain the determinants<br /> of individual health. Figure 2 illustrates this model in terms of depression in an<br /> individual with spina bifida (6). The physical and social environments, genetic<br /> endowment, and prosperity affect health and well-being in addition to the<br /> presence of disease and the availability and quality of health care.<br /> BACKGROUND<br /> Very few scientific studies of adults with spina bifida have been conducted. The<br /> ones that have been published often are descriptive and limited by small or nonrepresentative samples. However, the picture they paint of the life of an adult with<br /> spina bifida is not bright. For example, in a study of 53 adults who had spina<br /> bifida, lived in Kentucky, and had a mean age of 27.8 years at interview, 86%<br /> completed at least 12 years of school, but 80% earned less than $10,000 per<br /> <br /> 120<br /> <br /> Liptak<br /> <br /> Social Environment<br /> Stress<br /> Support<br /> <br /> Physical<br /> Environment<br /> <br /> Genetic<br /> Endowment<br /> <br /> Physical access<br /> <br /> Susceptibility to<br /> depression<br /> <br /> Disease<br /> <br /> Health Care<br /> <br /> Depression<br /> Dysthymia<br /> Spina bifida<br /> <br /> Availability<br /> Accessibility<br /> Affordability<br /> Quality<br /> <br /> Individual<br /> Response<br /> Behavior<br /> Biology<br /> <br /> Health<br /> and<br /> Fu n c t io n<br /> <br /> Prosperity<br /> <br /> Well-Being<br /> <br /> Socioeconomic status<br /> Decent paying work<br /> <br /> Figure 2 Evans and Stoddard model applied to depression in persons with spina bifida.<br /> Source: From Ref. 6.<br /> <br /> year, and 82% had been on Supplemental Security Income for an average of nine<br /> years. Ninety-three percent had never been married, 24% were currently sexually<br /> active, only 30% were employed, and 23% were driving. They spent an average<br /> of 29 hours per week watching television (their prime activity) and six hours<br /> talking on the telephone. Only 16% made all their monetary decisions on their<br /> own, 66% were using intermittent catheterization for bladder continence, only<br /> 51% were using a bowel program, and only 41% were continent of stool (7).<br /> In a study from Ireland, McDonnell and McCann found that only 36% of<br /> adults with spina bifida were employed, 33% were regular drivers, 17% were<br /> married or engaged, and 8% were parents (8). Secondary medical conditions<br /> that interfere with functioning occur commonly. For example, a group of 98<br /> adults with spina bifida accounted for 353 admissions to Johns Hopkins<br /> Medical Center during the study period; 166 (47.0%) of the admissions were<br /> due to potentially preventable secondary conditions such as serious urological<br /> infections, renal calculi, pressure ulcers, and osteomyelitis (9).<br /> WORK<br /> Current Status<br /> Work is a major way in which adults participate in society. As shown in Figure 1,<br /> impairments that affect body functions and structures, as well as activities, impact<br /> <br /> Adults Who Have Spina Bifida<br /> <br /> 121<br /> <br /> the ability to work (i.e., participation in society). On the basis of Figure 2, work is<br /> critical for prosperity, which in turn affects the physical and social environment,<br /> and has direct effects on health and well-being. Work too helps give individuals a<br /> sense of identity (as discussed by Erikson earlier), which is an ongoing process.<br /> It may also provide opportunities for intimacy (as opposed to staying home<br /> alone) and can help contribute to a sense of industry (another earlier but<br /> ongoing process).<br /> Very few studies relating to work in individuals who have spina bifida have<br /> been published. The few studies of adults with physical disabilities in general that<br /> have been done confirm the importance of work. The life goals of adults who<br /> have disabilities include the same ideals as those of adults without disabilities.<br /> In general terms, they include being independent, living on one’s own terms,<br /> and feeling that life is meaningful (10). In more specific terms, they include<br /> having adequate financial status, leisure activities (which often require adequate<br /> finances), and work (11). Poverty continues to be one of the most important determinants of health and well-being (12) and clearly is based in large part on the<br /> ability to hold a meaningful job.<br /> A number of descriptive studies have evaluated employment in adults with<br /> spina bifida. The rates for employment reported in these studies ranged from 4%<br /> to 88%, whereas unemployment rates ranged from 25% to 72%. The employment<br /> rate of 88% was found in a study of individuals with spina bifida without shunted<br /> hydrocephalus. For persons with shunts, the employment rate in that study was<br /> 42% (13). The outcome was worse in those who had revisions of their ventricular<br /> shunts, especially if the revisions had occurred after the age of two years. Significantly fewer of those who had had a shunt revision lived independently or drove a<br /> car. In more recent studies by the same group, adults with an age range of 26 to 33<br /> years were evaluated; 37% lived independently in the community, 39% drove a<br /> car, 30% could walk more than 50 m, and 26% were in open (not sheltered)<br /> employment (a worse outcome than before). Attainment and independence<br /> were reduced in those who had needed revision of their ventricular shunts (14).<br /> In another study by the same group, out of 54 adults with a mean age of 35<br /> years (range 32– 38 years), 22 lived independently in the community and<br /> managed their own lives including transportation, continence care, pressure<br /> areas, and all medical needs. Thirteen worked in open employment (15).<br /> Tew (16) found that employment of adolescents with spina bifida was 11%,<br /> whereas that for matched peers without disabilities was 37%. In a study from<br /> Ireland, McDonnell and McCann (8) found that 36% of adults with spina bifida<br /> were employed, 33% were regular drivers, 17% were married or engaged, and<br /> only 8% were parents.<br /> Factors Affecting Employment<br /> Cognitive abilities have been found to affect employment. In a study of 98 young<br /> adults, Tew et al. (17) found that 33% were employed and 32% were<br /> <br />