The experience of chronic sorrow in parents who have a child diagnosed with a significant disability: Investigating chronic sorrow across parental life

The focus and purpose of the this qualitative study is to describe parental experiences across the life cycle following the diagnosis of significant disability in their child and the concept of Chronic Sorrow described by Olshansky (1962). The study also hoped to provide avenues of expanding the Family Life Cycle theory (Carter and McGoldrick, 1988), The Contextual Approach to Family Stress Theory (Boss, 2002) and Ambiguous Loss (Boss, 1999, 2006) to become more inclusive for families who have a child with significant disabilities. Discussion surrounding Family Systems Illness Model (Rolland, 1994) and Experiential Family Therapy (Whitaker, 1989) were also included to provide understanding regarding the adaptations made by families and the use of Experiential Family Therapy with this particular family system to promote continued growth across the life cycle. Purposeful and Snowball sampling methods were used to contact 10 families living in the North Texas. Participants were asked to engage in audiotaped face to face interviews with the primary researcher. Responses to the research question and central prompts were transcribed from the audiotaped interviews and entered into a Word document for the purpose of coding. The coded data was studied

and nine primary themes were identified. These primary themes were: (1) reaction to the diagnosis, (2) barriers (medical and informational), (3) adjustment (spousal, family, siblings, extended family), (4) resiliency, (5) supports (extended family and community), (6) hope, (7) future, (8) chronic sorrow, (9) individual adjustment. These primary themes were then compared to those developed by Boss (1999, 2006) in her depiction of Ambiguous Loss. Adaptations to these themes were decided and were condensed into seven final themes: (1) The Initial Reaction of Chronic Sorrow to the Diagnosis, (2) Finding Meaning in an Overwhelming Situation, (3) Tempering Mastering of Parenting a Child with a Disability, (4) Normalizing the Ambivalence of Parenting, (5)Parents Restructure their Identity, (6) Discovering Hope in the Redefined Family, and (7) Ambivalence about the Future. This study discovered through the interviews with the parent participants that the experience of Chronic Sorrow began soon after receiving the diagnosis of significant disability for their child even though they did not have a term to describe the sense of loss being experienced. Parents in this study experienced multiple changes in their ideas regarding the diagnosis of disability, understanding the role of parenting and lifelong caregiver, involvement and connection of extended family and the decisions surrounding the future for the parent as an individual and for the child as they aged. Chronic Sorrow was found to be an experience that lasts across the life cycle, it is not a time bound concept, nor does it resemble a grieving process which has been associated with the loss of a loved one. Chronic Sorrow shares some similar components with Ambiguous Loss, and could be considered a Chronic Stressor as described in the Contextual Model of

Family Stress Theory (Boss, 2006). The study also provided possible inclusive adaptations to the Family Life Cycle Theory (Carter and McGoldrick, 1988) to include the disability diagnoses into the theory of the life cycle as well as adding an addition component to the theory that includes the process of the launching the child back into the home after school servicers have ended.