Maternal caregiving throughout the lifespan: an ethnographic study of the experiences of mothers of adult children who sustain traumatic brain injury

The survival rate of persons who sustain traumatic brain injury (TBI) continues to increase due to recent technological advances in emergency medicine, and use of helmets and seat belts. The survivors, who are often young adults, generally return to their family of origin to receive the care they need. Although it is widely acknowledged that TBI impacts on these families, particularly the mothers who play a crucial role in the caregiving, little is known about the changes that occur in the mothers' lives. The purpose of this study was to further understand the experiences of mothers whose lifespan expectations are altered when they become primary caregivers to their previously independent adult children. Using the ethnography method and drawing from Ryan's (1993) a "Lifetime of Mothering" conceptual framework as a basis to collect the data, constant comparative analysis was used to analyze the data. This approach resulted in a descriptive analysis that conveyed a common conceptualization of the experience. Participants were obtained through the British Columbia Brain Injury Society, Greater Victoria Hospital Society (now known as the Capital Health Region) and the "snowball" technique. Of eight mothers who were interviewed, six fit the criteria of the study. Interviews were one to two hours in length. Of the six mothers, length of time post-injury ranged from 3 years nine months to 11 years, the average length of time was 7 years 6 months. Four of the adult children were female. At the time of the interviews, three adult children with TBI lived in their mothers' homes, two had just started to live independently, and one lived in close proximity. The data analysis yielded the core category "The Experience of Enduring". The central components of the mothers' descriptions of Enduring were the processes of Becoming a Caregiver, Grasping Reality and Carrying Responsibility. Although each mother's situation was found to be unique, three major Tactics were used by all when Enduring the Experience that included: Pulling from Within; Comparing in Order to Put a Face On It; and Dealing With It. Dealing With It involved Inside Work and Outside Work. Inside Work encompassed activities directed at holding the mothers and their family together. Outside Work entailed activities dealt with outside the home that were directly related to the caregiving experience. The uniqueness of each mother's situation was influenced by three Intervening Conditions: Mothers' Individual Ways; Availability of Services; and Economic Influences. As a consequence of Enduring The Experience, all of the women experienced both Gains and Losses. These outcomes had a direct bearing on their Experience of Enduring. Mothers lives are permanently affected by the caregiving experience. The constant caregiving without adequate resources is particularly onerous. Ongoing caregiving of children with TBI has consequences which are both positive and negative. Mothers with TBI caregiving responsibilities over time develop strategies for coping. Based on the findings of the study, implications for nursing practice, education, and research were identified to provide nurses with the knowledge and skills to render support to these ongoing caregivers.

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