The impact of parental multiple sclerosis on the adjustment of children and adolescents

Adolescence, Fall, 2004 by Margaret A. De Judicibus, Marita P. McCabe

The current study was designed to examine whether children and adolescents who have a parent with multiple sclerosis (MS) are at increased risk of psychopathology. It was also designed to evaluate the impact of financial stresses and emotional reactions of parents with MS on the psychological adjustment of their children. Past research has indicated that children of parents with chronic illness are at risk of psychological maladjustment, although there appear to be both commonalities and differences between diverse parental illnesses and the adjustment of their children (Armistead, Klein, & Forehand, 1995; Champion & Roberts, 2001).

The experiences of children with a parent with MS would be expected to vary substantially, since adults with this chronic illness may or may not experience significant illness-related disruptions during their parenting years. MS usually manifests between the ages of 20 and 40 years, which is a life stage when parenting is an important issue for many; women are affected 1.5-2 times more frequently than men (Martin, Hohlfeld, & McFarland, 1996). The symptoms of this chronic disease vary. Some people with MS experience periods of disease exacerbation, followed by periods of remission, whereas others experience a steady progression of the disease (Mohr & Dick, 1998). The effects of MS may include fatigue, loss of balance, pain, incontinence, loss of vision, sexual dysfunction, digestive difficulties, and cognitive impairment (Mohr & Dick, 1998). Disruption of work and family roles is also likely to occur as the disease progresses. Braham, Houser, Cline, and Posner (1975) and Gregory, Disler, and Firth (1994) reported that the majority of parents with MS perceived that their illness had an effect on their children.

Chronic illness is likely to lead to impaired capacity to participate in paid employment. The concomitant financial stresses may have an impact on children.

The limited empirical studies that have been conducted on children's adjustment when their parents have MS have largely supported the social learning model (Bandura, 1977). This model proposes that children imitate their parents' behaviors (Finney & Miller, 1998). It predicts that children of physically ill parents would experience somatic complaints, and that children of depressed parents are likely to adopt a depressive approach to life. However, there may be multiple psychological and social factors that influence the effect of parental illness on children (Stein & Newcomb, 1994). For example, ill parents may pay less attention to their children's needs.

Arnaud (1959), using projective techniques, found that 60 children (aged 7 to 16 years) of MS parents had higher levels of body concern, dysphoric feelings, hostility, constraint in interpersonal relations, and dependency longings than a control group of 221 children. Children of parents with MS also demonstrated a false maturity reaction. Younger children scored significantly higher than the control group on general anxiety. However, not all the children were negatively affected by their parents' MS. Arnaud conjectured that differences in the nature of the parents' MS symptoms and personality changes (e.g., increased neuroticism) may influence the psychological adjustment of children.

Arnaud's findings were supported by those of Kikuchi (1987), who found that many children and adolescents of parents with MS experienced feelings of fear, anger, and sadness. Friedemann and Tubergen (1987) also found a high prevalence of emotionally influenced physical conditions (e.g., allergies, obesity), and fears of recurring nightmares among daughters of mothers with MS.

Braham et al. (1975) found that parents with MS were concerned about poor parent-child relationships and their children's behavior problems. A study by Peters and Esses (1985) supported the findings of Braham et al., in that they found that children in families with a parent with MS perceived that their families experienced more conflict and less cohesion as compared with a control group. The quality of parent-child interaction may be less positive during periods when parents are experiencing more MS-related fatigue. For example, Deatrick, Brennan, and Cameron (1998) found that mothers and children reported that mothers who were experiencing illness exacerbation were less affectionate to their daughters than were those whose illness was stable.

In short, it appears that children with a parent with MS are at risk of adjustment difficulties, particularly internalizing disorders. However, most of the studies on children of MS parents examined a limited range of childhood outcomes and/or lacked a comparison group from the general population. Few of the studies reported the clinical significance of the difficulties of children with a parent with MS, so that there is little information about whether the children's difficulties are of sufficient severity to require the attention of mental health professionals. Further, little empirical research has addressed the range of mechanisms by which parental MS may impact their children's adjustment.