Table 3 Domains investigated in the study (including the standardized questionnaires as applicable)^a

Physical and overall wellbeing

Health-Related Quality of Life (SF-36)

 x

 x

Self-report questionnaire on health status. Contains 36 items with 8 subscales, namely, vitality, physical functioning, bodily pain, general health perception, physical role functioning, emotional role functioning, social role functioning, and mental health

[15,16,17]

European Quality of Life questionnaire (EQ-5D-5L)

 x

 x

 x

x 

 x

Self-report questionnaire on health status validated for use in health-economic assessments. This measures 5 dimensions, namely mobility, self-care, usual activities, pain/discomfort, and anxiety/depression

[18]

Chronic diseases – Perrig & Merlo

 x

 x

 x

This consists of 11 most common chronic disorder answerable by “yes” or “no” by the respondents

[19]

Psychological health

Brief Symptom Inventory (BSI-18)

 x

 x

 x

 x

 x

Scale consists of 18 items with 3 subscales, namely, somatization, depression, and anxiety

[20, 21]

Worry and Anxiety Questionnaire (WAQ)

 x

 x

 x

 x

 x

Scale with 15 items and 2 subscales, namely, cognitive criteria or somatic criteria

[22]

Impact of Event Scale (IES-R)

 x

 x

 x

 x

Measures post-traumatic stress using 22 items comprising of 3 subscales, namely, intrusive symptoms, avoidance, and hyperarousal

[23]

Perceived Stress Scale (PSS)

 x

 x

 x

 x

 x

Contains 10 items that measure the level of stress. No subscales

[24]

Post Traumatic Growth Inventory (PTGI)

 x

 x

Measures posttraumatic growth and self-improvement after stress, containing 21 items with 5 subscales, namely, personal strength, new possibilities, improved relationships, spiritual growth, and appreciation for life

[25]

Connor-Davidson Resilience Scale (CD-RISC 10 & 25)

(10)

(10)

(10)

(10)

(25)

Contains 25 items (for cross-sectional) or 10 items (for longitudinal) which measures someone’s ability to recover from stress

[26, 27]

Internal/personal factors

Sociodemographic information

(45)

(28)

(28)

(28)

(27)

Demographic information, such as age, sex, education, employment, living arrangement, income. It also includes the support received by the grandparents

[28, 29]

Information needs

 x

 x

 x

 x

 x

Validated scale with 21 items that measure the information needs and preferences of grandparents regarding their grandchild’s diagnosis of cancer

[30]

European Health Literacy Survey Questionnaire (HLS-EU-Q12)

 x

 x

A 12-item version from the original 47 item questionnaire HLS-EU-Q47) that examines healthcare, disease prevention, and health promotion

[31]

Big Five Inventory of personality (BFI-K)

 x

 x

A German version of the Big Five Inventory using 21 items assessing five personalities extraversion, agreeableness, conscientiousness, neuroticism, and openness)

[32]

External factors

Multidimensional Scale of Perceived Social Support (MSPSS)

 x

 x

A self-report measure of social support with 12 items from three sources (subscale), namely, family, friends, and significant other/partner

[33]

Family relationships (FaBel)

 x

German version of the “Impact on Family” Scale. Measures the parent’s or caregiver’s perception of the impact of pediatric illness on the family. This consists of 18 items with subscales include financial impact, familial-social impact, personal strain, and mastery

[34, 35]

Adult-specific relationship attachment scales for partner relationship

 x

x 

x 

 x

 x

A 14-item questionnaires given to partners, analyzed in pairs, and has 2 subscales, namely, security of attachment and perceived available support

[36, 37]