When the Child's Illness Is Life Threatening
When the Child's Illness Is Life Threatening
An investigation of the impact on parents of children with life threatening (LT) and parents of children with non-life threatening (NLT) chronic illnesses measured satisfaction with social support received, perception of the impact of the child's illness, and coping behaviors. Eighty fathers and 80 mothers of children completed four questionnaires: (a) The Sociodemographic and Illness-related Questionnaire (Krulik, Hirschfield, & Sharon, 1984); (b) Social Support Questionnaire (London, 1988); (c) Perception of the Impact of the Child's Chronic Illness on the Parent Questionnaire (Katz, 1994); and (d) Coping Health Inventory for Parents (CHIP) (McCubbin, McCubbin, Patterson, et al., 1983). The results of parents together and fathers and mothers separately, and parents of LT and parents of NLT chronic illnesses were compared using ANOVA, MANOVA, and Doubly multivariate analysis. Parents of children with LT and NLT illnesses reported significant differences in social support, perception of the impact of the illness, and coping behaviors. Although fathers and mothers reported significant differences in the use of the medical team as a coping behavior, no significant differences were found between fathers and mothers related to social support and perception of the impact of the illness.
Advances in medicine and modern technology have increased the survival rate of children with chronic illness, including illnesses that were previously considered to be fatal (Cohen, 1995). Uncertain outcomes of illnesses, shortened hospitalizations, and intensive medical treatment in ambulatory settings increase the number of stressors the family faces, and consequently affect family functioning (Eiser, 1993; Sloper, 2000). Because most children with chronic illnesses live at home, the burden and responsibility for their care falls upon the family. Some families experience minimal disruption and increased closeness, while others experience severe disruption and crisis (Cadman, Rosenbaum, Boyle, & Oxford, 1991; Cohen, 1999; Steinglass, 1998; Tiedje & Darling-Fisher, 1996). Although some studies have investigated the impact of a child's chronic illness on family members and family functioning (Rolland, 1994; Whyte, 1994), there are few and conflicting reports of parents' coping behaviors and perceptions of the impact of children's chronic illnesses on parents. This is particularly true for comparisons between parents of children with life threatening (LT) illnesses and non-life threatening (NLT) illnesses.
Goldberg, Simmons, Newman, Campbell, and Fowler (1991) and Wallander, Varni, Babani, Tweddle Banis, and Wilcox (1989) claim that the diagnosis and other illness-related variables alone are not necessarily the determining factors on the parent's coping behavior. Child-related variables; personal and family attributes such as social support, sociocultural and environmental variables, and coping behaviors; and the family's subjective perception of the illness influence the parents' coping behaviors and adaptation to the child's illness (Beckman, 1991; Eiser, 1993; Wallander et al., 1989). Rolland (1994), Chesler and Barbarin (1987), and Sterken (1996) claim that parents who are faced with an uncertain future and threat to the life of their child behave and adapt differently to the child's illness than the parents of children with NLT illnesses.
Witnessing the child's pain and fear, combined with the constant fear of death makes it difficult for the family to function normally and plan for the future (Haas, 1990; Rolland, 1994; Sloper, 2000). Literature on the differential impact of the child's chronic illness on the fathers and mothers is limited (Elliot Brown & Barbarin, 1996; Havermans & Eiser, 1991; Heaman, 1995; Katz, 1994; Sterken, 1996). Although paternal roles have changed over the past few decades, with fathers becoming more involved in the care of their children, most studies have investigated the impact of the child's chronic illness on mothers, assuming that fathers perceive the illness, react, and cope in a similar manner (Cayse, 1994; Cohen, 1999; Copeland & Clements, 1993; Krulik et al., 1999). In a study of fathers of children with chronic illnesses, Cayse (1994) found no differences between the severity of the illness and father's coping behaviors. Fathers may be as deeply traumatized as mothers, and there is an increasing urgency to investigate their needs, perceptions, and coping styles (Eiser, 1993; Elliot Brown & Barbarin, 1996; Heaman, 1995).
An investigation of the impact on parents of children with life threatening (LT) and parents of children with non-life threatening (NLT) chronic illnesses measured satisfaction with social support received, perception of the impact of the child's illness, and coping behaviors. Eighty fathers and 80 mothers of children completed four questionnaires: (a) The Sociodemographic and Illness-related Questionnaire (Krulik, Hirschfield, & Sharon, 1984); (b) Social Support Questionnaire (London, 1988); (c) Perception of the Impact of the Child's Chronic Illness on the Parent Questionnaire (Katz, 1994); and (d) Coping Health Inventory for Parents (CHIP) (McCubbin, McCubbin, Patterson, et al., 1983). The results of parents together and fathers and mothers separately, and parents of LT and parents of NLT chronic illnesses were compared using ANOVA, MANOVA, and Doubly multivariate analysis. Parents of children with LT and NLT illnesses reported significant differences in social support, perception of the impact of the illness, and coping behaviors. Although fathers and mothers reported significant differences in the use of the medical team as a coping behavior, no significant differences were found between fathers and mothers related to social support and perception of the impact of the illness.
Advances in medicine and modern technology have increased the survival rate of children with chronic illness, including illnesses that were previously considered to be fatal (Cohen, 1995). Uncertain outcomes of illnesses, shortened hospitalizations, and intensive medical treatment in ambulatory settings increase the number of stressors the family faces, and consequently affect family functioning (Eiser, 1993; Sloper, 2000). Because most children with chronic illnesses live at home, the burden and responsibility for their care falls upon the family. Some families experience minimal disruption and increased closeness, while others experience severe disruption and crisis (Cadman, Rosenbaum, Boyle, & Oxford, 1991; Cohen, 1999; Steinglass, 1998; Tiedje & Darling-Fisher, 1996). Although some studies have investigated the impact of a child's chronic illness on family members and family functioning (Rolland, 1994; Whyte, 1994), there are few and conflicting reports of parents' coping behaviors and perceptions of the impact of children's chronic illnesses on parents. This is particularly true for comparisons between parents of children with life threatening (LT) illnesses and non-life threatening (NLT) illnesses.
Goldberg, Simmons, Newman, Campbell, and Fowler (1991) and Wallander, Varni, Babani, Tweddle Banis, and Wilcox (1989) claim that the diagnosis and other illness-related variables alone are not necessarily the determining factors on the parent's coping behavior. Child-related variables; personal and family attributes such as social support, sociocultural and environmental variables, and coping behaviors; and the family's subjective perception of the illness influence the parents' coping behaviors and adaptation to the child's illness (Beckman, 1991; Eiser, 1993; Wallander et al., 1989). Rolland (1994), Chesler and Barbarin (1987), and Sterken (1996) claim that parents who are faced with an uncertain future and threat to the life of their child behave and adapt differently to the child's illness than the parents of children with NLT illnesses.
Witnessing the child's pain and fear, combined with the constant fear of death makes it difficult for the family to function normally and plan for the future (Haas, 1990; Rolland, 1994; Sloper, 2000). Literature on the differential impact of the child's chronic illness on the fathers and mothers is limited (Elliot Brown & Barbarin, 1996; Havermans & Eiser, 1991; Heaman, 1995; Katz, 1994; Sterken, 1996). Although paternal roles have changed over the past few decades, with fathers becoming more involved in the care of their children, most studies have investigated the impact of the child's chronic illness on mothers, assuming that fathers perceive the illness, react, and cope in a similar manner (Cayse, 1994; Cohen, 1999; Copeland & Clements, 1993; Krulik et al., 1999). In a study of fathers of children with chronic illnesses, Cayse (1994) found no differences between the severity of the illness and father's coping behaviors. Fathers may be as deeply traumatized as mothers, and there is an increasing urgency to investigate their needs, perceptions, and coping styles (Eiser, 1993; Elliot Brown & Barbarin, 1996; Heaman, 1995).