Table 3

Work of Care Tasks

Category

Codes

Papers

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]

Hexem et al. BMC Pediatrics 2011 11:95   doi:10.1186/1471-2431-11-95