Chronic sorrow: The lived experience of parents of chronically mentally ill individuals

The Lived Experience of Mothers of Children with Chronic Feeding and/or Swallowing Difficulties

“…A persistent feeling of loss, described as ''chronic sorrow'' by Olshansky [29], was not resolvable as the mothers in this study could not let go of the dream and experienced periodic resurgence of intense grief at times when they saw other women performing mothering tasks relating to feeding, when their child was unable to participate in pleasurable activities and social engagements involving eating (e.g., birthday parties, picnics, religious holidays), and when expected developmental feeding milestones could not be met: ''…I had an incredible need for him to eat normal food.'' The presence of a persistent sorrow has also been documented in parents of children with intellectual impairment [30], developmental disability [31], prematurity [32], Down syndrome [33], chronic mental illness [34], and chronic medical conditions [35,36] and should be viewed as a natural rather than pathologic reaction to ongoing experiences of loss in the presence of chronic illness or disability [37]. Moreover, these parents face an ''ambiguous (unclear and indefinite) loss'' as their feelings of loss may not receive public recognition nor be ritualised as would occur following the death of a child [38].…”

Loss and change: The challenges of mothering an adult child with schizophrenia

“…[11][12][13][14] This literature has drawn attention to multiple burdens associated with caring for a family member who has a mental illness including: financial challenges, physical and psychological demands associated with care-giving and advocacy, disruption of household routines, restriction of social activities, impaired relationships with others outside of the family, emotional distress associated with difficult and at times bizarre behaviours, as well as secondary distress associated with the reactions of others both within and outside of the family. Several studies [15][16][17] have also drawn attention to an ongoing pattern of grief associated with parenting a child with mental illness. Given the uncertain prognosis and unpredictable course associated with mental illnesses like schizophrenia and schizoaffective disorder, parents also worry about how their child's needs will be met when they are no longer living or are no longer able to provide for, and take care of, their child.…”

Parents’ Grief in the Context of Adult Child Mental Illness: A Qualitative Review

“…Reminders of their loss-cues may include special events, milestones, relapses or disruptions to family life, for instance-have been reported to trigger grieving (Ozgul 2004). The notion that a child or relative's mental disorder is a complex, unending loss that parents and families continue to grieve adheres to Olshanksy's (1962) concept of chronic sorrow (Eakes 1995). Eakes (1995) identified chronic sorrow in eight out of ten parents who had an adult child with Schizophrenia or Bipolar disorder.…”

“…Chronic sorrow was perceived as a normal parental response to the complex loss associated with their child's mental retardation (Olshanksy 1962). Twenty years after Olshanksy's (1962) comments, a number of studies have emerged documenting the incidence of this phenomenon in parents of children with various mental and physical conditions; including, chronic mental illness (e.g., Eakes 1995;Howard 1998), mental retardation (e.g., Wikler et al 1981), Down syndrome (e.g., Damrosch and Perry 1989), sickle cell disease (e.g., Northington 2000), lissencephaly (e.g., Scornaienchi 2003) and children born premature (e.g., Fraley 1986).…”