Supporting families over the life course: mapping temporality.
Think in stages, not snapshots, when you support families of individuals with intellectual disability.
01Research in Context
What this study did
DeLeon et al. (2003) built a map. The map shows how caregiving changes as families grow older.
They looked at families who care for someone with intellectual disability. The paper is ideas, not numbers.
What they found
The team says caregiving has stages. Needs shift as parents age and sons or daughters age.
The map helps you see what support a family might need next.
How this fits with other research
Davison et al. (1995) asked ageing moms how they feel. Their survey came first and gave real-life data that G et al. later turned into the stage map.
Van der Molen et al. (2010) came next. They kept the life-span view but added a new rule: put relationships first, not just independence.
Hsieh et al. (2014) tracked Swedish dads for five years. Their study gives a father-side proof that coping paths change over time, just as the 2003 map predicts.
Why it matters
Use the map when you write a care plan. Ask where the family sits today, where they may head next, and what support fits that next stage. A quick shift in questions can turn a static plan into a living guide that grows with the family.
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02At a glance
03Original abstract
BACKGROUND: The present paper addresses a rather neglected dimension of family caregiving, its temporality. Many accounts of caregiving assume a state of stasis, and therefore, overlook factors which shape the evolving experience of family caregiving over the life course. METHODS: The paper begins by offering some reflections on theoretical and methodological issues identified by life-course researchers. RESULTS: Based both on theoretical propositions and a growing body of empirical evidence, this paper offers a heuristic for thinking about caregiving stages applied to families supporting people with intellectual disability. CONCLUSIONS: This heuristic is used to suggest further avenues of research and development.
Journal of intellectual disability research : JIDR, 2003 · doi:10.1046/j.1365-2788.2003.00495.x