Table 1 Descriptions of variables
Constructs | Indicators | Measures | Description of Measure |
|---|---|---|---|
Psychological health: the mental and emotional health of the caregiver | Chronicity of distress Distress Scaled score of role emotional Scaled score of mental health Reported health transitions | National Population Health Survey (NPHS): MH Q1A to Q1F [33] NPHS: MH Q1G-Q1L[33] Medical Outcomes Study: Short Form 36 Health Survey (SF36) [34] | Based on a subset of questions related to mental and emotional health from the Composite International Diagnostic Interview (CIDI). The SF36 is a generic measure of health concepts related to everyone's functional status and well-being. |
Physical health: the subjective and objective measures of the physical health of the caregiver | Scaled score of general health Scaled score of physical functioning Scaled score of role-physical Scaled score of bodily pain Scaled score of vitality Presence of chronic conditions (caregiver) | Medical Outcomes Study: Short Form 36 Health Survey (SF36)[34] National Longitudinal Study of Children and Youth (NLSCY): CHRON Q1 [35] | The SF36 is a generic measure of health concepts related to everyone's functional status and well-being. Caregiver responds yes/no to a list of chronic health conditions defined as lasting or expected to last 6 months or more and diagnosed by a health care professional. |
Social support: the social relationships that the caregiver has with family, friends and others. | Social provision scale Existence of possible persons to be contacted Number of contacts for all categories Social Functioning from SF36 | Social Provision Scale NLSCY: SUP-Q1A to SUP-Q2D [35] Social Network & Frequency of Contact Index: NPHS: SUP-Q7A to SUP-Q7H [33] SF36 [34] | A short version of the Social Provisions Scale by Cutrona ussell, which measures perceived social support from family and friends. Social Network summarizes the existence of possible persons in the caregiver's social network. Contact Index measures the number of contacts the caregiver has had with family, friends and neighbours in the past 12 months. SF36 |
Family functioning: the level of family functioning and cohesion | Family functioning (caregiver) | Family Assessment Device (FAD) in NLSCY (FNC-Q1A to Q1M) [35] | A global assessment of family functioning and an indication of the quality of relationships between parents or partners. |
Self-perception: elements of self-concept and control affecting the caregivers live | Mastery (caregiver) Self esteem (caregiver) | NPHS: MAST-Q1 [36] NPHS: ESTEEM Q1 [36] | A scale that measures elements of self-concept and control affecting the caregiver's lives. A scale of six items that measure caregiver self-esteem. |
Stress management: the behaviours and practices of the caregiver in response to life problems and situations. | Integration, cooperation, optimism Support, esteem, stability Medical communication & consultation Mastery scale summary score Self esteem summary score | Coping Health Inventory for Parents (CHIP) [37] | Assesses caregivers' appraisal of their coping responses to the management of family life when they have a child member who is seriously and/or chronically ill. |
Perception of formal care: caregiver strain | Enabling and partnership Providing general information Providing specific information Coordinating care Respectful and supportive | Measures of Processes of Care (MPOC) [38] | Measures the caregiver's perceptions of the extent to which specific behaviors of health professionals occur. |
Caregiving demands: cross-pressures and dilemmas related to caregiving and occupation. | Caregiving assistance performed by primary caregiver in self care Caregiver assistance in mobility | Pediatric Evaluation of Disability Inventory (PEDI) Parts II and III Caregiver Assistance (Self-Care and Mobility) [39] | Measures the typical amount of caregiver assistance provided to the child during the completion of basic functional activities in areas of self-care and mobility |
Child disability: child's level of motor severity and cognitive function, medical problems, and extent of independence in daily activities. | Functional Self Care Functional Mobility | Pediatric Evaluation of Disability Inventory (PEDI) Part 1: Functional Skills (Self-Care and Mobility Domains) [39] | Child is rated as capable/unable on a list of items (73 self care items and 54 mobility items) |
Child behaviour: child's feelings, behaviour and social function | Conduct disorder Hyperactivity Emotional disorder | Survey Diagnostic Instrument (SDI) [40] | The SDI is a subset of 24 items of the Child Behaviour Checklist that breaks down into three scales: conduct disorder, hyperactivity and emotional disorder |
Socio-economic status: social and economic characteristics of the family | Education Level Gross household income | NLSCY: EDUC-Q2, EDUC-Q3 [35] NLSCY: INCOM-Q3B [35] | Questions related to highest level of education caregiver completed. Question about the annual gross household income |