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RESULTS AND DISCUSSION The findings indicate that SWD experience care planning as an ongoing, fluid and emotionally charged process. Parental fears, about future care landscapes they do not control and about passing on intergenerational care responsibilities, emerge as key factors inhibiting planning. CONCLUSION Attention to the highly emotive nature of care concerns, and to the tentative pace of planning that is comfortable for families, will help professionals provide optimum planning support. © 2020 John Wiley Sons Ltd.BAC