| Prior research has overly narrowed the framework in which to study care decisions that adult offspring make for cognitively impaired parents. In addition, the relative paucity of interpretive studies in this area limits our understanding of this phenomenon. Qualitative methods such as hermeneutic phenomenology can help build knowledge of this complex and profound issue. Therefore, this qualitative study was conducted to answer the question “What is the experience of making care decisions for cognitively impaired parents?”; The research strategy was Hermeneutic/Phenomenological. A purposeful sample consisted of 22 adult offspring who self-identified as primary decision-makers for cognitively impaired parents. Participants included 14 adult daughters, 6 adult sons and 2 daughters-in-law ranging in age from 35 to 64 years who were making decisions for parents 73 to 91 years of age. To ensure trustworthiness there was: prolonged engagement (35 hours) with the data using ATLAS.ti software; decisions were audited for themes and meanings by outside presentations, committee chair and other interested parties; use of bracketing by researcher; and saturation of codes and themes.; A reiterative decision-making process emerged from 19 categories, which were derived from 67 codes. This process included five themes, which participants would revisit in varying order when confronted with the need to make a decision about care. These five themes were: Finding a Voice; Professing Fidelity; Speaking for the Speechless; Correcting Course; and Expressing Gratitude.; Understanding that adult offspring go through a reiterative decision making process, it becomes vital to help them through the “Finding a Voice” phase so that their parents can benefit from early treatments that are currently available. Providing easy access to support and information (e.g., the Internet), especially during the Professing Fidelity and Speaking for the Speechless phases, might help this population deal with time constraints that often interfere with using resources available to them through conventional methods. In addition, supporting public policy changes concerning accessible, reliable, affordable day and respite care would sustain them through the “Correcting Course” phase. Finally, assisting respondents to further explore the “Expressing Gratitude” phase would help them to acknowledge their decision-making abilities under difficult circumstances. |
