The Family and Home Hemodialysis: Adolescents' Reactions to a Father on Home Dialysis

Abstract

Quality of life is the most controversial issue surrounding home hemodialysis. We examined how sixteen adolescents and their six families reacted to having a father on home hemodialysis, exploring the interplay between adolescent developmental conflicts and family stresses. Family members underwent role changes to adjust to alterations imposed by hemodialysis. Some adolescents helped relieve family stresses by taking an active role in dialysis. These eight adolescents developed greater self-esteem which enhanced identity growth and facilitated separation. Psychological responses were observed that resembled the "death guilt," "psychic numbing," and "invisible contamination" described in Hiroshima survivors. Adolescent developmental problems can be dwarfed by family conflicts around chronic illness and dialysis. Families adjusted to home hemodialysis showing new growth, managing with a barely workable arrangement, or adapting unsuccessfully. Understanding more about how home hemodialysis can influence family interactions can enable the medical staff to facilitate beneficial changes, and thereby improve the quality of life for patient and family.

A literature review of the potential effects of having a parent with chronic renal failure

“…The study concluded that these children appeared to have what was necessary for a good life, although more information, particularly in relation to how other family members were feeling and specifically regarding parental condition and treatment, would further improve it. This is similar to the findings of Goldman et al . (1980–1981), and highlights the need for relevant information which is accessible to the child.…”

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Families were asked to participate in the study if the family included at least one son or daughter between the ages of twelve and twenty‐one years who was living at home (or who had lived at home within five years prior to the study) while a parent was on home dialysis. (Goldman et al . 1980–1981, p. 236)

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“…The adolescents were interviewed privately for between one and two hours. Goldman et al . (1980–1981) identified that this group of adolescents had specific emotional and information needs in relation to their father's dialysis.…”

“…(1983) working in South Africa. This study focussed on adolescents in an age range of 13–18 years, potentially, therefore, a very different adolescent group to those interviewed by Goldman et al . (1980–1981).…”

“…Two of the studies considered in previous sections, Evans (1978) and Goldman et al . (1980–1981) specifically mention children taking on a caring role and helping with parental dialysis.…”