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Spinal Cord Injury  and Family

Wise Young, MD, PhD

Spinal cord injury is a life-altering experience not only for the person with injury but for spouses, parents, siblings, and children of the person.  Many researchers have analyzed family adjustment to spinal cord injury.  Most of the studies have focused on spouses with relatively few studies of children, parents, or siblings.  However, a wealth of information is available on effects of spinal cord injury on marital relationships and effects of family on people with spinal cord injury.  A review of this literature suggests interesting and surprising patterns, as well as several major gaps in our knowledge.

Effect of Spinal Cord Injury on Family Members

Studies of the effects of spinal cord injury on families usually focus on spouses and have paid little attention to other family members.  Little has been published on the effects of spinal cord injury on children, siblings, parents, and other relatives.  Family members suffer from stress, grief, and depression when a spinal cord injury occurs in the family.

The burden of caregiving most frequently falls on the spouse.  Caregiving spouses are often severely stressed, particularly due to health issues that arise after spinal cord injury.  Chan (2000) studied this phenomenon in Hong Kong, finding that spouses of persons with spinal cord injury suffer emotional stress that is comparable to or greater than those of the injured partner.  Spouses who are caregivers for people with spinal cord injury may be more depressed than their partners with disabilities.  Caregivers have a higher incidence of physical stress, emotional stress, burnout, fatigue, anger, and resentment (Weitzenkamp, et al. 1997) than their partners or spouses who are not the caregivers.  Chan, et al. (2000) report that the impact of spinal cord injury is more severe on marriages that began before than after the injury.  An early study suggested that disabled people in pre-injury marriages receive more daily personal care assistance from their spouses than those in post-injury marriages (Crewe, et al, 1979).   

Given the disruptive and impoverishing effects of spinal cord injury on families, most people assume that spinal cord injury of a parent has deleterious effects on children.  However, several studies suggest that spinal cord injury does not have as much deleterious long-term effect on the well-being of children.  Killen (1990) assessed roles of children in families after spinal cord injury and found that spinal cord injury did not change the roles, i.e. mothers, fathers, husbands, and wives continued to play their traditional roles.  Buck & Hohmann (1981) examined the effects of fathers with spinal cord injury and subsequent adjustment of 45 children compared to matched 36 children with able-bodied fathers.  They found the children to be well-adjusted and emotionally stable with normal sex role identifies.  Buck & Hohmann (1984) also analyzed the effects of financial insecurity and unemployment on child development, comparing children whose fathers were receiving ample income with those who were unemployed.  They found no adverse relationship between child adjustment and financial resources of father's financial resources.  Alexander, et al. (2002) described the impact of mothers with spinal cord injury on family and children's adjustments.  They also found no adverse effects on the children's adjustment, gender role identity, self-esteem, or attitudes towards mother and father.  There is a need for more studies on this subject, particularly with long-term follow-up of children whose parents have suffered spinal cord injury.  While there is a dearth of information on the effects of parental spinal cord injury on children, much information is available concerning children who have parents with other disabilities.  Through the Looking Glass (http://www.lookingglass.org/) is a wonderful web site in Berkeley California that has pioneered research, training, and services for families with disability.  It is estimated that 2.6 to 4.7 million parents with disabilities are raising teenage children in the United States and nearly 10.9% of all American families with children include at least one parent who has a disability.

Almost everybody who is spinal injured has a parent.  Over half of people in the United States are injured before age 26.  When a person is young and not married, the burden of caregiving frequently is taken up by the parents.  There is often nobody else.  Yet, almost nothing is published in the medical literature concerning parents of people with spinal cord injury.  I can say, however, from meeting many parents of injured people that the spinal cord injury of a child is as or more life-altering for them.  One other factor may play a role as well.  Many parents cannot adjust or forget.  Years and even decades after the spinal cord injury, many parents are still grieving.  It is not unusual to find tears in the eyes of a parent of a person with spinal cord injury when they talk about the accident and the events that follow.  Feelings of helplessness and hopelessness, guilt, and depression often pervade their lives for a long time.  There may also be differences between the responses of mother and fathers.  

  Little is known about the effects of spinal cord injury on siblings, except for a few anecdotal stories (Shaddinger, 1995).  The effects of injury of course depend on the age and closeness of the siblings.  Very little has been published on the potential disruptive effects of spinal cord injury on the life, education, attitudes, and adjustment of siblings.  Interestingly, there are several studies of the effect of spinal cord injury on identical twins.  Tirch, et al. (1999) assessed depression in 11 monozygotic twins with one spinal-injured member and found no significant differences of depression, suggesting that depression may have a genetic basis and spinal cord injury does not inevitably lead to depression.  An alternative interpretation is that depression in one member of the pair leads to depression in the other.  Twin studies, however, have provided a variety of insights into spinal cord injury induced changes in body composition and metabolism (Spungen, et al., 2000; Bauman, et al. 1999).  Likewise, Kahn, et al. (2001) examined platelet function in 12 pairs of monozygotic twins and showed significant differences in platelet function related to loss of high-affinity prostanoid receptors, perhaps explaining the greater incidence of coronary disease in people with spinal cord injury.  Sibling studies have also been used to assess the insulin resistance and sympathetic functions in high spinal cord injury (Karlsson, 1999; Karlsson, et al., 1995). 

Effect of Spinal Cord Injury on Marriages

Spinal cord injury significantly affects marriages.  In general, people with spinal cord injury are less likely to be married and more likely to be divorced (DeVivo & Fine, 1985).  Given the disruptive effects of spinal cord injury on the family, the burden of caregiving being carried by the spouse, and impairment of sexual function, most people assume that spinal cord injury causes divorces and strongly discourage post-injury marriages.  However, the effects of spinal cord injury on marital rates and marital relationships are less deleterious than commonly assumed.  While divorces are more common after spinal cord injury, divorce rates are highly variable.  Finally, sexual function and children are not only possible but common after spinal cord injury.

.  The marriage rate of people with spinal cord injury is lower than the general population but the factors that influence marriage rate may differ from what is commonly assumed.  Disability appears to exert a greater effect on the marital status of females than males (Brown & Giesy, 1986).  Although medical complications have an adverse impact on quality of life of adults with pediatric-onset spinal cord injury (Vogel, et al. 2002), the presence of pressure ulcers, severe urinary tract infections, and spasticity have little effect on marriage rate of adults with pediatric onset spinal cord injury.  In contrast, the presence of head injury has much more adverse effects on marital status (Florian, et al. 1991). 

Marital Relationships. 
Several studies have reported differences in the quality of marital relationships in pre- and post-injury marriages.  Peters, et al. (1992) compared marital relationships between people with spinal cord injury and head injury, finding that the latter causes much greater adjustment difficulties for spouses than the former.  Crewe & Krause (1988, 1992) report that individuals who marry after injury have measurably higher life satisfaction than those married before injury.  Yim, et al. (1998) assessed the quality of marital life among Korean couples with spinal cord injury.  Married couples with spinal cord injury were not more unstable, had similar dyadic adjustment and marital satisfaction, appear to be more cohesive than able-bodied couples, even though husbands with spinal cord injury tend to show less affection and the couples regarded loss of sexual function as a serious problem.  Distressed couples with spinal cord injury tend to express more dissatisfaction with sexual relations and more negative communication during conflict resolution (Urey & Henggeler, 1987). 

.  Divorce rates are higher after spinal cord injury (DeVivo & Fine, 1985) but reported divorce rates are highly variable from 8-48%.  One early study suggested that divorce rates of pre-injury marriages are comparable to divorce rates of the general population (El Ghatit & Hanson, 1976).  DeVivo, et al. (1995) examined 622 married persons enrolled in the National Spinal Cord Injury Statistical Center data set since 1973, finding a total of 126 divorces compared to 74 expected divorces based on age-sex-specific divorce rates of the general population.  Men had a 2.07 times higher rate of divorce than women with spinal cord injury.  DeVivo, et al. (1991) and Kreuter (2000) both point out that divorce rates are high during an initial high-risk period but tend to stabilize.  Lapham-Randlov (1994) suggests that while the experience of spinal cord injury is painful, it offers opportunities for personal growth and family coalescence. 

Sexual satisfaction. 
Spinal cord injury obviously impairs sexual function.  However, sexual satisfaction does not appear to be related to physical factors such as erectile function, genital sensation, or orgasmic capacity as much as perceived partner satisfaction and relationship quality (Phelps, et al., 2001).  Fisher, et al. (2002) assessed sexual function in 40 people (32 men, 8 women) with spinal cord injury.  By 6 months after discharge from hospital, most of the participants in the survey had made significant changes in sexual behavior and activity.  Most of the respondents had realistic concerns coupled with more requests for sexual health intervention.  However, many were engaging in sexual activity.  In Iceland, 55.5% of spinal-injured people are married and 71% had an active sexual life after injury (Knutsdottir, 1993).  As with able-bodied populations, sexual activity is reduced in elderly people with spinal cord injury (Larsen & Hejgaard, 1984).  A survey of 79 men with spinal cord injury in Houston suggests that although sex life was ranked lowest in terms of satisfaction, it was also ranked fifth in terms of importance (White, et al., 1992).  In women, sexual dysfunction is inversely related to the perceived importance of sex (Harrison, et al., 1995), i.e. greater sexual dysfunction is associated with less perceived importance of sex and vice versa.  Thus, sex is important but is not necessary for sexual satisfaction or sexual activity, and is frequently not the most important factor in life satisfaction.

Menarche and Pregnancy. 
Most people assume that spinal cord injury impairs ability to have children.  Spinal cord injury generally should not prevent fertility in young women (Ohry, et al. 1978) and many women have had normal children after spinal cord injury.  Anderson, et al. (1997) examined menstruation after spinal cord injury in 37 people injured between age 10-16.  Seven reported no interruption of menses while 8 had interrupted menses for 1-7 months and the rest had normal onset of menarche.  Most women have sexual intercourse after spinal cord injury and most are capable of achieving orgasm and are normally fertile (Biering, et al., 2002).  Autonomic dysreflexia does complicate pregnancy and delivery (Wanner, et al. 1987) but can be managed with appropriate drugs and delivery approaches.  Cross, et al. (1992) described 22 women who had 33 pregnancies after spinal cord injury.  The mothers waited on average 5 years to become pregnant and 43% had caesarians.  All the newborns were healthy on delivery except for one premature baby and a double footling breech vaginal delivery.  Baker, et al., (1992) likewise reviewed 11 spinal-injured women with 13 pregnancies, finding uniformly good infant outcome with no major obstetric complications.

Fertility in Men.
  While spinal cord injury does impair erectile and ejaculatory function, semen can be obtained from almost all men with spinal cord injury through the use of vibratory or electrical stimulation (Brackett, 1999; Sonksen & Ohl, 2002).  Because the bladder sphincter may not be closed during ejaculation, the semen often goes into the bladder.  Many techniques are available to manage erectile and ejaculatory dysfunction in men with spinal cord injury (Biering-Sorenson & Sonksen, 2001).  Although ejaculates from men with spinal cord injury usually have normal sperm counts, sperm motility may be impaired.  Myths abound concerning the roles of elevated scrotal temperature, ejaculation frequency, or bladder management methods as causes of this condition.  Recent studies suggest that physiological factors due to the spinal cord injury influences semen quality of men with spinal cord injury (Brackett, et al. 1996; Monga, et al. 2001), due to imbalance of sympathetic and parasympathetic innervation of the prostate.  This cause of reduced fertility can be effectively dealt with in several ways.  With appropriate rehabilitation and treatments, most men with spinal cord injury can and do have children. 

Factors Affecting Family Relationships

Family relationships strongly influence life satisfaction of people with spinal cord injury.  Warren, et al. (1996) found that closeness to family, the level of family activities, and blaming oneself for the injury were the three most important variables determining life satisfaction in people with spinal cord injury.  Many factors affect family relationships, including the presence of depression, suicidal ideation or attempts, and cultural factors.  Some of these factors are ameliorated by development of independence, behavioral changes, and a sense of hope.

Depression is common in people with spinal cord injury although not as common as in multiple sclerosis (Shnek, et al., 1997).  Krause, et al. (2000) suggests that 48% of patients with spinal cord injury in 1997 had clinical symptoms of depression at a year or more after injury.  Kemp & Krause (1999) compared depression and life satisfaction amongst people with spinal cord injury, post-polio syndrome, and non-disabled population.  The post-polio group tended to score better on both depression and life satisfaction; only 22% of the post-polio group had depressive symptoms compared to 41% of the spinal cord injury group and 15% of the non-disabled group.  One study showed that 60% of Portuguese patients with spinal cord injury have depressive symptoms (de Carvalho, et al. 1998).  Kennedy & Evans (2001) report high levels of emotional distress in 14% of patients at 6-24 weeks after injury, significantly higher in females.  Kennedy & Rogers (2000) examined 104 patients (19 women, 85 men) for anxiety and depression, finding consistent patterns of depression that were highest during the acute phase and during the months leading up to discharge.  Pain exacerbates depression (Cairns, et al., 1996; Nagumo, 2000; Ravenscroft, et al. 2000).  Holicky & Charlifue (1999) report that married individuals have less depression, greater life satisfaction, superior psychological well-being, and better perceived quality of life.  Depression may be seasonal (Joerres, et al., 1992).  Coping effectiveness training can significantly reduce depression scores (King & Kennedy, 1999). 

In the U.S., suicide rates of Vietnam veterans with spinal cord injury are nearly 10 times the suicide rate in the general population (Rish, et al., 1997).  In the civilian population, suicide accounts for 6.3% of deaths after spinal cord injury (DeVivo, et al., 1991) and ranges from 2-6 times more prevalent than the general population (Charlifue & Gerhart, 1991).  In Denmark, suicide rate is 5 times higher than the general population and surprisingly not related to injury severity (Hartkopp, et al., 1998) .  Kishi, et al. (2001a) reports that 7.3-11.3% of Japanese patients express suicidal ideation during hospital and rehabilitation phases, similar to other patients with acute life-threatening illnesses (Kishi, et al. 2001b).   Some spinal cord injuries occur as a result of suicide attempts and nearly a third of such people in a British study appear to have schizophrenia (Kennedy, et al. 1999).  Some people may respond with self-destructive behavior, including drug abuse (Krause, et al. 2001).  While death due to infection in spinal cord injury has fallen substantially over the past 20 years, the suicide rate has increased over the same period (Soden, et al., 2000; Hartkopp, et al., 1998, 1997). 

Several studies have identified a potential role of self-blame in depression and life satisfaction after spinal cord injury.  A large majority of people either totally blame themselves or others for their injury (Brown, et al. 1999).  Paradoxically, people who are blameless for the accident tend to be less successful coping (Stensman, 1994).   Blaming oneself for the injury is associated with increased life satisfaction (Warren, et al., 1996).  Reidy & Caplan (1994) examined the hypothesis that people who accept responsibility for their injury cope better with their spinal cord injury.  Attribution of blame (either self or others) did not correlate with depression during the rehabilitation phase but people whose self-blame increased over time did exhibit greater depression.  Over the long term, the relationship between self-blame and depression declines (Schulz & Decker, 1985).  On the other hand, people who show anxiety and depression at a year after injury do not seem to get better with time (Craig, et al. 1994). 

Cultural factors.
  Cultural differences may affect family life, social interactions, and perception of spinal cord injury (Saravanan, et al., 2001).  Ide & Fugl-Meyer (2001) compared life satisfaction of people with spinal cord injury in Japan and Sweden.  Even when corrected for injury level and severity, the data suggest that Swedish people are more satisfied than Japanese in terms of general health, economy, social activity, social services, family life, and sexual life.  A recent comparison of spinal-injured individuals in Turkey and the United States, however, revealed limited differences in social participation once the data is corrected for age and injury differences (Dijkers, et al., 2002).  Ville & Rayaud (2001) surveyed 1668 people with tetraplegia in France, finding that the age of impairment and having a job do not predict self-assessments of well-being although the presence of pain, subjective assessment of independence, and severity of disability strongly predict a sense of well-being; loss of independence only affected well-being in that it imposes limits on social activity.  McColl, et al. (2002) compared American, British, and Canadians who are at least 20 years after spinal cord injury.  They found that Americans had a better psychological profile with fewer health and disability-related problems, that British participants had less joint pain and less likelihood of perceiving that they are aging quickly, and that Canadians had more health and disability related complications.  The reasons for these differences are not clear.

The independence of individuals with spinal cord injury may affect family relationships.  Spinal-injured individuals who are more independent tend to perceive their family environment as more responsive and more open (McGowan & Roth, 1987).  Even when corrected for injury severity and disability, the productivity of an individual after spinal cord injury is most influenced by the following variables in order:  education, ability to drive a car, other transportation indices, and age (Noreau, et al., 1999).  Boekamp, et al. (1996) reviewed the literature for potential causes of depression after spinal cord injury and found that social support and recent stressful events can be used to identify patients at a high risk of depression but that they are less likely to become depressed if they are independent.  Adjustment to spinal cord injury and quality of life can be adversely affected by inadequate home facilities that make a person more dependent (Seki, et al., 2002).  Expectations of independence decline steadily with increasing age (McColl, et al. 1999).

Spinal cord injury causes personality and behavioral changes as people adjust to life after injury.  Buchanan & Elias (1999) assessed personality and behavior changes in people after spinal cord injury, comparing the perceptions of the changes by the person and the spouse.  Both partners usually agree that spinal cord injury causes significant personality and behavior changes.  It is important to emphasize that not all behavioral changes, however, are due to the spinal cord injury.  Many people with spinal cord injury have had head injury.  For example, in the above study from Buchanan & Elias, 5 of the 9 participants described post-traumatic amnesia lasting longer than 3 days, suggestive of traumatic brain injury.  Perception of adjustment to spinal cord injury by persons and family members appear to be similar.  Glass, et al. (1997) compared the views of adjustment by 250 persons with spinal cord injury and by their closest relatives.  The injured persons' perceptions of adjustment appear to be at least as reliable as their closest relatives.  Adjustment to spinal cord injury also changes with time after injury.  Although most studies show increasing adjustment to spinal cord injury over time, this may not be true for the long term Krause (1997) examined 235 people with traumatic spinal cord injury who were more than 23 years after injury and found declines in perceived well-being. 

Hope is a potentially important coping strategy for both the person and family with spinal cord injury.  Davies (1993) interviewed people with spinal cord injury and found that goal-directed hope based on realistic perceptions of life, focusing on progress, positive interpretation of events, and goal setting are important in helping people and families cope with spinal cord injury.  The process of hope can be a generalized and positive force to reduce depression, the sense of powerlessness, and grief (Lohn, 2001; Sullivan, 1990).  Elliot, et al. (1991) assessed whether a sense of hope and a ‘sense of pathways' (ability to find ways to meet goals) predicted psychosocial interactions, depression, and impairment.  They found that a sense of ‘hope' predicts psychosocial interactions while ‘sense of pathways' negatively correlates with depression and impairment.  Piazza, et al. (1991) report predictive relationships between hope, social support, and self-esteem in 77 patients, finding that the best predictors of hope in people with spinal cord injury are self-esteem, social support, and education. 

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To read more about spinal cord injury:

What is the Spinal Cord

What is Spinal Cord Injury

Spinal Cord Injury Levels and Classification

Acute Spinal Cord Injury

Chronic Problems of Spinal Cord Injury

Recovery and Treatment

Recovery from Spinal Cord Injury

Spinal Cord Injury and Family

Ten Frequently Asked Questions Concerning Cure of Spinal Cord Injury

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