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Care Ecosystem Maps

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These diagrams attempt to show the people involved in a person’s family caregiving activities and the nature of their involvement. They show who cares for whom, what they do, how often they do it, and how near they are geographically.

The data was generated by interviewing a family caregiver. To determine the participants in the care ecosystem we asked: Who all do you care for? Who else cares for those people? And, who cares for you? For these identified participants, we then also asked about what they did, how often they were involved, and where they lived. The interviews, generally done in person and lasting about an hour, were conversations, lightly structured around these questions.

The diagrams highlight several aspects of the care network.

  • The people involved, and their relationship to the interviewee (for friends & family) or their role (professional caregivers).
  • The frequency of care provided ranging from multiple time each day to occasional. This also provides a rough proxy for the “amount” of effort put in by the carer.
  • The geographic distance between people. Long-distance carers (those living more than 2 hours away) were sometimes quite far, across the country or even overseas.
  • The type of care provided. Some carers had no regular contact with the care recipient, but actively monitored the situation by speaking with other carers. This is noted by “Stay aware.”

Two examples are presented here.

In one, a husband is caring for a wife with dementia. One of their children is also at home. The wife’s sisters provide some support, but infrequently and live far away. Professional caregivers are involved daily, both at home and at a nearby facility. Neighbors and a support group provide valuable assistance to the husband for his own needs.

Family_Network_Diagram_Roger_1160px_150515

In the other, a woman cares for her aging mother who lives in a nearby nursing home. While there are numerous professional caregivers at the facility, is still very involved in her mother’s care. She also has two children at home, one with autism who requires a lot of care. Her ex-husband and some professionals are also involved in her son’s care. She herself is supported by nearby friends and a professionally-led support group, as well as by distant brothers. She also noted that the emotional support she got from her children was important to her wellbeing.

Family_Network_Diagram_Katy_1160px_150515

 


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