Post-caregiving transitions in African American caregivers

ABSTRACT Caregiving studies generally do not focus on the post-caregiving phase of care, or African Americans post-caregivers (AAPCGs). This mixed-methods study guided by the Transitions Theory, explored the experiences of 40 AAPCGs residing in Los Angeles, California and Phoenix, Arizona, whose loved ones died within the last 10 years. Data collection tools included individual interviews, demographic questionnaire, CES-D, Brief Cope, and Social Support. Findings present the specific aims of the study. Aim 1 dealt with the types, patterns and properties of post-caregiving transitions (PCT). Many AAPCGs experienced multiple, simultaneous transitions that continued to impact their lives many years after caregiving ends. Aim 2 dealt with factors that facilitate or inhibit healthy PCT. Facilitators include: Being satisfied with care provided; fulfilling death-bed promises; living out the legacy of the deceased; deep spiritual beliefs in God and support of family, friends and church. Inhibitors include: Experiencing a deep sense of loss, confusion, depression, loneliness, and guilt; physical challenges such as fatigue and exhaustion, breathing problems, dizziness, fainting, cognitive difficulties, pain, headaches, hypertension and insomnia; family conflicts, job or home loss that linger long after PCT. Aim 3 involves process indicators including: connectedness with family, friends, co-workers, church and God; returning to work or school. Coping strategies that helped AAPCGs include: productive ventures, family mementoes, reminiscing, new baby, or visiting cemetery. Appropriate coping led to outcome indicators of mastery such as new environment; making decisions; taking actions; readying oneself for another caregiving role; preparing for one's own life and death; or caring for self. Fluid integrative identities include: Sense of balance, peacefulness and joy, fulfillment, compassion; remembering without pain; or new identity. Implications for practice, policy, education and research include: Care providers and policy makers must ensure that AA caregivers receive adequate EOL and hospice information and support for adequate preparation of loved one's death. Geriatric educators must design and implement curricular programming that includes the post-caregiving phase as a very important phase of caregiving. Researchers should design culturally-congruent assessment tools or improve the checklist developed in this study to appropriately measure PCT; and also develop culturally-relevant interventions to facilitate healthy PCT.