Understanding family needs, roles, and responsibilities

caregiver needs

-trust

-advocacy

-resources

developing caregiver skills requires

-time

-patience

-practice

-education

responsibilities

-specific jobs that family members perform

roles

-identities and expectations that develop over time

caring for spouse/partner

-responsibilities change

-new roles start

-loss of independence/denial

-spouse needs time to grieve and adjust

-family therapy and support proven to buffer concerns and aid transition

caring for parent

-conflicting responsibilities: not enough time at home vs not enough time w/ parents

-caregivers kids may feel neglected or act out

-caregiver may be susceptible to developing own health problems

unrecognized caregivers

-minor kids caring for parents

-younger kids may resent parents

-older kids worry about health of parent and siblings

-kids don't often seek support

caring for child

-parent may feel responsible for illness/disability

-need time to mourn loss of child they expected

-financial costs and other burdens

-fear of who will care for them if they aren't there

-angry, depressed, or envious of typical kids

-feel guilty going out to have fun as their child can't

siblings

- experience family stress

-feel guilt for being healthy

-lack parental support

-older kids may be given role of caregiver for younger sibs

-response varies depending on congenital vs acquired

caregiver burden

-results from intensity of providing long-term care

-can lead to depression

-must refer to family counselors or therapists as needed

-pts who need more assistance over time leads to decreased time allowed for caregiver self-care

-can result isolation, anger, frustration, coping mechanisms, postponing taking care of their own health

objective burden

-tasks caregiver must perform that changes their lives as a result

subjective burden

-results from emotional factors resulting from caregiving responsibilities such as fatigue, social isolation etc

Respite care

-temporary daytime or overnight relief

-adult day care

-bus services

-volunteers from religious organizations

-other family members

how can we help

-ID the primary caregiver to develop the appropriate tx plan

-be aware of frequent changes in who is primary caregiver

-may need to provide necessary info to multiple family members

-give communication options

-be concise and plain in communication

-ensure they feel competent in their roles, have realistic expectations, know what to do in case of emergency, know who to contact w/ questions after dc