Table 4.

Work of Care Resources/Constraints

Category	Codes	Papers
CHILD
Gender	How child's gender affects the situation	[14,17,37]
Disease	Diagnosis and prognosis	[24,32,37,41,45,60]
	Severity, symptoms, and child's quality of life	[14,17,20,31,32,41,45,51,56]
	Episodic quality of illness and uncertainty	[41,42,49,57]
Medical care	Type of technology or equipment	[31,42,45,52,58]
	Frequency of treatments	[32,56]42
Age	Newborns, children, and adolescents	[14,15,17,33,45]
	Transitioning to Adult Care	[24,27]
Behavior	Cognitive and emotional function/expression	[14,32,45]
	Functional ability/activity limitations	[14,32,45,61]
Location	Home, hospital, or elsewhere	[14,17,20,25,31,37,47,51,58]
PARENT
Gender roles	How the roles of mothers and fathers differ	[14,30,31,37,41,49,52,56,59,61]
Mental health	Emotions, quality of life, and stress	[14,20,31,32,34,36-38,40,41,43,45,51,52,55,59,61,62]
Personality	Hardiness, self-esteem, and coping style	[56,57,59,61,63]
Physical health	Sleep, immune function	[33,55,58]
Knowledge	Medical and parenting skills and experience	[21,47]
	Education level	[34,39]
Social support	Availability of friends and family	[17,31,32,57-59,61,63]
FAMILY
Family structure	Family cohesion, including marital dynamics	[35,38,56,58,59,63]
	Single parents	[14,31,34]
	Step parents and foster parents	[45,49]
	Siblings	[14,32,35,52,58]
Finances	Employment, income, and expenses	[17,31,32,34,36,37,47,55,56,58,60]
	Insurance and eligibility for services	[17,45,49,51,60]
SOCIETY
Minority status	Race, ethnicity, language, culture, and SES	[15,28,47,50,51]
Geographic locale	Different regions, countries. Immobility.	[45,47,50,56,61]
Attitudes and norms	Disability and disease in childhood	[25,28]
	Parental responsibility and gender norms	[24,25,28,41,47,49]
Health services	Availability of care facilities and providers	[23,24,31,50]
	Awareness of available services	[32,45]
Political system	Government policies and funding	[17,31,34,36,45,47,50,56,58]