Table 1 Parent-reported screening and outcome measures

Mediating factors Cognitive/psychological skills

Acceptance and Action Questionnaire – II (AAQ-II; [39]).

7 items assessing psychological flexibility/inflexibility (acceptance and experiential avoidance); e.g. “I’m afraid of my feelings” rated on a 7-point scale (1 = never true, 7 = always true). Higher scores indicate greater experiential avoidance and immobility; lower scores indicate greater action and acceptance. Mean Cronbach’s α across studies = .84.

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Pre, post, follow-up

Parental Psychological Flexibility Questionnaire (PPF; [19]).

30 items assessing psychological flexibility (emotional willingness, cognitive defusion, acceptance) in relation to being a parent; e.g. “My emotions get in the way of being the type of parent I would like to be” rated on a 7-point scale (1 = never true, 7 = always true). Higher scores indicate poorer parental psychological flexibility. Cronbach’s α = .89 total scale, .90 cognitive fusion, .74 emotional willingness, .79 acceptance.

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Pre, post, follow-up

Five Facet Mindfulness Questionnaire – Short Form (FFMQ-SF; [40])

24 items assessing general tendency towards day to day mindfulness. The five facets include: Observing, Describing, Acting, Nonjudging of Inner Experience, and Nonreactivity to Inner Experience. Items are rated on a 5-point scale (1 = never or very rarely true, 5 = very often or always true). For all facets, higher scores reflect higher levels of mindfulness. The five facets demonstrated adequate to good internal consistency, Cronbach’s α = .75–.87 [41]

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Pre, post, follow-up

Valuing Questionnaire (VQ; [42])

8-items assessing the degree to which people live by their values. The VQ consist of 2 subscales: Progress (extent to which people felt that they lived their values in the past week) and Obstructed (the extent to which cognitive and emotional barriers interfered with acting out their values in the past week). Items are rated on 6-point scale (0 = not true at all, 6 = completely true). Cronbach’s α for the Progress and Obstructed subscales are .90 and .83, respectively.

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Pre, post, follow-up

Parent Mental Health

Posttraumatic Stress Disorder Checklist – Specific (PCL-S; [36])

17 items assessing the symptoms of re-experiencing, avoidance and arousal over the past month; e.g. “Feeling as if your future will somehow be cut short?” rated on a 5-point scale (1 = not at all, 5 = extremely). Higher scores indicate greater symptoms of posttraumatic stress. Cronbach’s α = .97 total scale, .93 re-experiencing, .92 avoidance, and .92 arousal subscales [43].

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Pre, post, follow-up

Depression Anxiety Stress Scale (DASS; [37])

21 items assessing symptoms of depression, anxiety, and stress or tension experienced over the past week; e.g. “I couldn’t seem to experience any positive feeling at all” rated on a 4-point scale (0 = does not apply to me at all, 3 = does apply to me very much or most of the time). Response are summed and multiplied by 2 to obtain a total score for each scale. Higher scores indicate greater symptoms. Cronbach’s α = .88 depression, .82 anxiety, and .90 stress [44].

Scores indicating mild or higher symptoms on any subscale: >5 for depression; >4 for anxiety; >8 for stress.

Pre, post, follow-up

Parent Adjustment

World Health Organization Quality of Life – BREF (WHOQol – BR EF; [45])

26 items assessing perceptions of ones quality of life; e.g. “How much do you enjoy life” The WHOQol consists of four domains of quality of life: physical health, psychological, social relations and environment. All items are rated on a 5-point scale (1 = an extreme amount, 5 = not at all). Cronbach’s α = .71–.85.

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Pre, post, follow-up

Posttraumatic Growth Inventory – Short Form (PTGI; [46])

10 items assessing positive changes in individuals who have experienced highly challenging life circumstances; e.g. “I have changed my priorities about what is important in life” rated on a 5-point scale (0 = I did not experience this change as a result of my child’s illness/injury, 5 = I experienced this change to a very great degree as a result of my child’s illness/injury). Higher scores indicate increased positive changes since child’s diagnosis. Cronbach’s α = .86.

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Pre, post

Parent Experience of Child Illness (PECI; [47])

25 items assessing parent adjustment (guilt and worry; emotional resources; unresolved sorrow and anger; long-term uncertainty) to a child’s serious or chronic illness; e.g. “I worry that any minute, things might take a turn for the worse” rated on a 5-point scale (0 = never, 4 = always). Higher scores indicate poorer adjustment to a child’s illness. Cronbach’s α = .72–.89.

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Pre, post, follow-up

Family Management Measure (FaMM; [48])

Condition Management Ability Subscale 12 items assessing how families manage caring for a child with a chronic condition; e.g. “It is often difficult to know when our child’s illness must come first in our family” rated on a 5-point scale (0 = Strongly Disagree, 5 = Strongly Agree). Higher scores indicate increased positive changes since child’s diagnosis. Subscale Cronbach’s α = .73

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Pre, post, follow-up

Child Adjustment

Brief Infant-Toddler Social and Emotional Scale (BITSEA; [49])

42 items assessing parent perceptions of their infant or child’s (12–36 month olds) difficult behaviours and social-emotional problems which fall into seven domains: internalizing, externalizing, dysregulation, competence, social relatedness, maladaptive, and atypical (e.g. “Your child: Hits, bites or kicks you”). Items are rated on a 3-point scale (0 = not true/rarely, 2 = very true/often), with higher scores indicating greater levels of social-emotional or behavioural problems. The BITSEA has good internal consistency and inter-rater reliability, and excellent test-retest reliability [50]. Internalising, externalising and dysregulation subscales will only be administered.

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Pre, post, follow-up

Behavior Assessment System for Children, Second Edition (BASC-2; [51])

134-items for children aged 2–5 years, and 160-items for children aged over 6 years which assess maladaptive and adaptive behaviours and self-perceptions of children. Items (e.g. ‘Is easily upset’; ‘Has trouble making new friends’), are rated on a 4-point scale (1 = never, 4 = almost always). There are nine clinical scales: Hyperactivity, Aggression, Conduct Problems, Anxiety, Depression, Somatization, Atypicality, Withdrawal, and Attention Problems; and three adaptive scales: Adaptability, Social Skills, and Leadership. There are also four composite scores: Externalizing Problems, Internalizing Problems, Behavioral Symptoms Index, and Adaptive Skills. Cronbach’s α range from mid .80s to mid .90s [52].

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Pre, post, follow-up

Child Wellbeing

Paediatrics Quality of Life [PedsQL; 53].

23 item assessing health-related quality of life in children and adolescents across four dimensions: Physical, Emotional, Social, and School functioning. Items (e.g. “In the past one month how much has your child had problems with feeling sad or blue”) are rated on a five-point Likert scale (1 = never a problem, 5 = always a problem). Higher scores indicate a better quality of life. Cronbach’s α for the parent report Total Scale Score = .90, Physical Health Summary Score.88, and Psychosocial Health Summary Score 0.86 parent) [53].

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Pre, post, follow-up

Screening, demographic and potential confounders

Acute stress

Acute Stress Disorder Scale [ASDS: [54]).

19 items assessing acute stress disorder in individuals in the acute period (up to 4 weeks) following a traumatic event e.g. “during the trauma did you ever feel numb or distant from your emotions?” Measures 4 cluster of symptoms - dissociation (5 items), re-experiencing (4 items), avoidance (4 items) and arousal (6 items) rated on a 4-point scale (1 = Not at All to 5 = Very Much). Scores are summed. Internal consistency for the total scale was reported to be .96 and .84 for dissociation, .87 for experiencing, .92 for avoidance and .93 for arousal [54].

Scores of 9 or above on the first 5 items and 28 or above on the remaining 14 items.

Screening

Parent Demographic Factors

Demographics

Participant demographic information was collected, including age, gender, employment status, education attainment, relationship status, partners employment status, partner education attainment, country of birth, languages spoken, child’s age, child’s gender, number of other family members, service usage, and other significant life events.

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Screening

Life Events Questions

The life events questionnaire was developed by the senior investigators to obtain information about potential psychosocial stressors that participating parents may have experienced in the past 12 months (in addition to their child’s serious illness/injury). The questionnaire contains a total of 14 items and asks about job loss and reduced work hours, recent pregnancies, moving home, suffering a serious illness/injury themselves, separation/divorce, or whether they have experienced an event they found traumatic. The parent is also asked to report on their partner. In addition to these items, a final 15^th item was included to ask about a history of mental illness in the year prior to their child’s illness/injury.

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Pre, post, follow-up

Health Economic Questions

14 items assessing the potential impact of their child’s illness/disability on financial and employment conditions, as well as the health economic impact of the intervention. This measure is un-validated and was developed in consultation with a Health Economist and are commonly used by health economists to conduct an economic evaluation of the impact of the child’s illness/injury on the parents and family.

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Intervention Acceptability

Consumer Satisfaction Scale [55].

19 items assessing consumer satisfaction with the quality of the service provided; how well the program met the parent’s needs and changed behaviour, and whether the parent would recommend the program to others. Parents are also prompted to make general comments or suggestions about the program.

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Post