Academic journal article The Qualitative Report

Lived Experiences of Adult Children Who Have a Parent Diagnosed with Parkinson's Disease

Academic journal article The Qualitative Report

Lived Experiences of Adult Children Who Have a Parent Diagnosed with Parkinson's Disease

Article excerpt


"The bond between mother and child is so deeply rooted in our emotions that we fear to discuss openly anything that threatens the bond"--Glenna Atwood (1991)

Establishing links between chronic illnesses and family impact are not novel (e.g., Cooke, McNally, Mulligan, Harrison, & Newman, 2001; Kielcolt-Glaser & Newton, 2001, Martire, Lustig, Schultz, Miller, & Helgeson, 2004). However, much of the attention to study inclusion of a family caregiver into the care experience has focused on the spouse (Keefe, Buffington, Studts, & Rumble, 2002) or children under the age of 25 (e.g., Olsen & Clarke, 2003; Pakenham, Bursnall, Chiu, Cannon, & Okochi, 2006), and not as much attention has been paid to the experiences of the adult children who are also involved in providing some level of care.

The parent-child bond is one of the most enduring familial relationships (Golish, 2000). In fact, most parents and children share 50 or more years of their lives together (Hagestad, 1987). With increasing numbers of chronically ill older adults in America (Anderson, 2002), there is a growing trend of adult children who inevitably become the caregivers for their parent(s) (Walker & Pratt, 1991) and who themselves experience biomedical, psychological, and social stresses and strains associated with their care giving role (Kaufman & Uhlenberg, 1998; Lieberman & Fisher, 1995). Adult children are voicing an increased need for support from helping professionals as they take on added responsibilities for their parent's care and well-being.

Chronic Illness and the Family

Several researchers have studied the systemic implications of chronic illnesses on the family unit (Johnston & Martin, 1992; Lieberman & Fisher, 1995; Papadopoulos, 1995; Rehm & Catanzaro, 1998), but few have focused on what happens to the parent-adult child sub-system. It is known that "chronic illness often creates shifts in interdependence, independence, and dependence within a parent-child relationship" (Roberto, 2001, p. 69), and whereas some parent-adult child relationships transform with ease, others experience a lack of intimacy, understanding or acceptance, and/or poor communication.

According to Rose-Itkoff (1987), when chronic illness enters the family it initially takes a central role requiring that families organize around it and adapt accordingly. However, excessive centrality of an illness may lead families to become "stuck" in patterns appropriate for short term use, but not for long term effectiveness. Families may also organize around a certain belief or explanation of the illness (Phipps & Lazzarini, 1987). For example, some believe that illness in the family may be a blessing because it brings their family closer together. Their interpretation of the illness may promote group identity and interaction and this may determine how they address, resolve, or avoid conflict within their family.

In the wake of a chronic illness diagnosis, families have to negotiate new role definitions, coping methods, and loss of or added responsibilities (Papadopoulos, 1995). In addition, continual role changes may emerge as an illness progresses and "deeply held notions about relationships and obligations are suddenly subject to reevaluation and alteration" (Rose-Itkoff, 1987, p. 313). For instance, there may be a greater likelihood for role reversals to occur between a parent and a child when the parent becomes ill. Parents may become dependent upon their children for survival leaving children to take more of a decision-making role. According to Papadopoulos, families often grieve the loss of role definitions, physical functioning, responsibilities, dreams, and the prospect of a long life span for their ill family member. Adaptations to the demands of a chronic illness may far exceed a family's expectation for what life should be like at this stage of the illness. …

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