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Table 3 Self-administered measurement tools used to examine coping strategies, quality of life, and caregiving complexity

From: A systematic review of the association between coping strategies and quality of life among caregivers of children with chronic illness and/or disability

Measurement tool

Description of the tool

Reviewed studies using this tool

Quality of life instruments

 World Health Organization Quality of Life Assessment Questionnaire (WHOQOL-BREF) [47]

Latent variable composed of four subscales (physical, environmental, psychological, and social relationships) for a total of 26 items; higher score indicates better quality of life. Sub scale scores or a total overall scale can be computed.

[23, 24, 48, 49]

 Medical Outcomes Study Short Form 36 Health Survey (SF-36) [55]

Generic measure of health concepts related to functional status and well-being; comprised of 8 domains and provides summary score for physical and psychological well-being.

[54]

 Medical Outcomes Study Short-Form Health Survey version 2 (SF-12v2) [56]

Comprised of 12 items and 8 health concept subscales, also gives a summary score for physical and mental health status. Physical component sumamry (PCS) is made up of the physical functioning, role physical, bodily pain and general health subscales whereas the mental component (MCS) is comprised of the vitality, social functioning, role emotional, and mental health subscales.

[52, 53]

 EuroQoL five-dimensional (EQ-5D) questionnaire [58]

Consists of five health profile domains: mobility, self-care, usual activities, pain/discomfort and anxiety/depression, each domain is assessed using a single item. A visual analogue scale is also used and ask caregivers to rate their current health status (range from 0 to 100).

[59]

 Quality of Life in Pediatric Epilepsy Scale – Parent Form [61]

Comprised of four sub scales: psychological, physiological, functional, and social, with higher score indicating lower QoL.

[60]

 Parents Diabetes Quality of Life Questionnaire [62]

Assesses parents’ perceptions of the impact of diabetes treatment on their general satisfaction with life; comprised of three subscales: diabetes life satisfaction, disease impact, and disease-related worries.

[63]

Coping instruments

 Coping Health Inventory for Parents (CHIP) [37]

Comprised of 3 subscales: 1) maintaining family integration, cooperation and optimistic definition of the situation; 2) maintaining social support, self-esteem and psychological stability; 3) understanding the healthcare situation through communication with other parents and consultation with the healthcare team.

[48, 54]

 Brief COPE Inventory [33]

Comprised of 14 sub scales with two items each; broadly captures coping methods. Sub scales can be summarized into adaptive or maladaptive coping strategies.

[24, 52, 59]

 Revised Ways of Coping Checklist [31]

Consists of 66 items separated into eight different cognitive and behavioural strategies (sub scales) used to cope with stressful encounters: confrontive coping, distancing, self-controlling, seeking social support, accepting responsibility, escape avoidance, planful problem solving, and positive reappraisal.

[23]

 Calsbeek Coping Inventory for Stressful Situations (CISS) [65]

Comprised of 21 items in three domains: problem-oriented, emotion-oriented, and avoidance-oriented coping strategies.

[53]

 Perceived Ability to Cope with Trauma Scale (PACT) [66]

Comprised of two sub scales: emotional processing and forward focus, single score used.

[60]

 Issues in Coping with IDDM-Parent Scale [67]

Measures parents’ issues in coping with their child’s diabetes; Consists of two sub scales: how difficult and how upsetting parents find it to cope with issues related to management of child’s Type 1 Diabetes.

[63]

 Family Coping Patterns Questionnaire (FCPQ) [68]

Comprised of 34 items in 3 sub scales: avoidance-oriented coping, cognitive appraisal-oriented coping, and task-oriented coping strategies

[49]

Caregiving complexity instruments

 Revised Burden Measure [74]

Latent variable composed of three subscales: Relationship Burden, Objective Burden, Subjective Burden.

[24]

 Revised Scale for Caregiving Self-Efficacy [75]

Consists of three domains: obtaining respite, responding to disruptive patient behaviours, and controlling upsetting thoughts. Sub scale and overall scores.

[48]

 Caregiver Strain Questionnaire [76]

Consists of three domains: objective strain, subjective internalized strain, and subjective externalized strain, an overall burden score is used.

[52, 59]

 Pediatric Evaluation of Disability Inventory (PEDI) [77]

Measures amount of caregiver assistance provided to a child during basic functional activities of daily living.

[49, 54]