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Table 4 Work of Care Resources/Constraints

From: The dynamic system of parental work of care for children with special health care needs: A conceptual model to guide quality improvement efforts

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]