Breaking bad news: communication around parental multiple sclerosis with children

Families, Systems & Health, March, 2009 by Elena Paliokosta, Stavroula Diareme, Gerasimos Kolaitis, Emmanuel Tsalamanios, Spyros Ferentinos, Sofia Anasontzi, Eirini Lympinaki, Alkis Tsiantis, John Tsiantis, Clementine Karageorgiou, George Romer

This study investigates the relation of communication around parental multiple sclerosis (MS) to family dysfunction and mental health problems of the children in Greek families. Fifty-six families with a parent with MS were studied regarding emotional well-being of children, parental depression, family functioning, and illness' related impairment, correlated to the amount of information about parental illness provided to children. Significant differences were found in three dimensions of child psychopathology on maternal scores of Child Behavior Checklist, between children who had partial information about parental illness and the other two groups of children who had explicit or no information at all. Differences were also observed in children's scores on (Youth Self Report) social problems between the same groups. The finding that children who had only partial information about their parents' illness presented more problems, illustrates the importance of "how, what, and how much" of information is communicated to children. Clinical implications are discussed in terms of the families' difficulties with communicating parental illness with their children and possible need for profesional support.

Keywords: children of parents with multiple sclerosis, family communication around illness, children's mental health problems

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Communication regarding illness in the family can become difficult particularly in the case of chronic or terminal illness (Dosanjh, Barnes, & Bhandari, 2001; Papathanasopoulos, Nikolakopoulou, & Scolding, 2005). Family members are often uninformed about illness details such as severity and prognosis while literature suggests that doctors worldwide seriously underestimate the need for information of their patients and their families (Fallowfield, Jenkins, & Beveridge, 2002). This happens more often with children who at the same time may undertake a carer's role for the ill parent (Lackey & Gates, 2001). Conspiracy of silence about diagnosis, prognosis, and treatment, becomes therefore a vicious cycle involving both families and clinicians. The fact that it is more prominent in the case of terminal diseases reflects the role of clinicians' feelings and indicates the need for systematic support of professionals working in the field (Von Gunten et al., 2000). However, even in nonterminal, chronic illnesses like multiple sclerosis (MS), clinical observations suggest that most clinicians neither actively include the children of the ill parent in the process of informing nor encourage the parent to discuss the issue of illness openly with family members (Diareme et al., 2005; Fallowfield et al., 2002). This is reflected in the fact that relevant literature is scarce.

MS is the most common demyelinating illness of the central nervous system, presenting at the age of 25-35 years and running a chronic, progressive, and unpredictable course with exacerbations and remissions (Ebers, 2001). Depending on the physical disability and cognitive impairment induced by the illness, MS may result in milder or more severe disability, including loss of employment, decline in the standard of living and withdrawal from social activities, causing severe stress to both the patient and the patient's relatives (Kalb, 1998). The relapsing and progressive course of MS, often occurring over many years, with varying and unpredictable symptomatology may have a profound impact on the patient's emotional well-being (Miller, 1997). At the same time it poses adjustment and mental health problems in the children of the family (Mullins et al., 2001) that have been only recently identified and studied. Parental MS is therefore considered to be a stressful experience for young people, constituting a potential threat to their mental well-being and development. Literature indicates that children of somatically ill parents are at risk of emotional/internalizing and/or behavioral/ externalizing disturbances (De Judicibus & McCabe, 2004; Romer, Barkmann, Schulte-Markwort, Thomlla, & Riedesser, 2002; Tsalamanios et al., 2003). Children's distress may be related to a variety of factors, regarding the illness itself (e.g., severity, stage, prognosis), the child (e.g., sex, developmental stage), and the family (e.g., social support, communication) (Armsden & Lewis, 1993; Watson et al., 2006). Additionally, children's adjustment to parental MS seems to depend largely on the parents' capacity to go through a mourning process for their potential loss of competencies, family activities, and so forth, induced by the illness (Steck, Kappos, & Burgin, 1998). Decreased family cohesion was observed as a characteristic of families with an MS patient (Peters & Esses, 1985) and was attributed both to the lack of family compatible activities and patient's withdrawal. Therapists experienced in counseling for families living with MS (Segal, 2003), have described that attribution of parental emotions to the children, but also identification of children's with their parents emotional state are reactions that could have a role in sustained emotional difficulties. Steck et al. (2005) found that there was an indication for psychotherapy for more than half of children/adolescents of a parent suffering from MS and there was a significant correlation between this indication and the children having to cope with the parental illness. The fact that, in a significant proportion of families with a chronically ill parent, children are not fully informed about the parental illness, has further hampered research in this area, as parents are often reluctant to discuss their illness with mental health professionals.