Table 3 Work of Care Tasks

CHILD WITH SPECIAL HEALTH CARE NEEDS (CSHCN) CARE WORK

   Medical tasks

Medications and care of technical devices

[15, 18, 21, 24, 25, 30, 37, 52, 55, 56]

   Management

Overall management

[15, 18, 19, 22, 23, 26, 38, 39, 56]

Collaboration with medical professionals

[18–20]

Bureaucracy/paperwork

[17, 19, 22, 50]

Crisis care and emergency room visits

[19, 21–23, 57]

   Monitoring

Constant awareness of child's health status

[15, 18, 22, 25, 38, 42, 52, 58]

   Decision Making

Deciding which tasks to take on, and which roles.

[15, 17, 19, 24]

   Education

Seeking medical information/skills training

[17–20, 22, 24, 46]

   Parenting tasks

Emotional support and developmental needs

[19, 20, 24–28]

FAMILY CARE WORK

   Day-to-day

Daily routines and "normal" life, time management

[17–19, 21–23, 26, 29, 30, 32, 33, 46, 58]

   Division of labor

Care of siblings

[17, 22, 23, 29, 31, 32, 35, 38, 52, 58]

Employment

[31–34, 36]

Household chores

[17, 22, 32, 33, 37]

Helping and supporting each other

[15, 19, 22, 23, 26, 29, 30, 59]

   Communication

Talking with other family members about situation

[19, 38, 43]

PARENTAL SELF CARE WORK

   Self-care

Emotional management

[19, 22, 23, 25, 26, 30, 37–41, 43]

Diet, exercise, and relaxation

[22, 32, 33, 40]

Personal religious practice (i.e. prayer)

[19, 38, 40, 41]

   Finding support

Maintaining communication with friends

[19, 26, 32, 33, 42, 57]

Support of other families in similar situations

[17–19, 26, 33, 38, 44, 46]

SOCIETAL WORK

   Advocacy

Educating others

[19, 26]