Table 3

Parent and family measures used within the Cerebra 1000 Families Study

DomainMeasureScoringMeasured atWave 1 measure completeness
Parental positivityPositive gains scale (Jess, Bailey, Pit-ten Cate et al, Measurement invariance of the positive gains scale in families of children with and without disabilities)
7 items
Perceived benefits for parent (5 items)
What family has gained (2 items)
5-point scale from 0 (strongly agree) to 4 (strongly disagree).
Original scale had a lower score indicating higher positive gains. The scoring was reversed so that a higher score indicates higher positive gains.
W1, W2Complete n=1004
Missing n=180
Parent mental healthKessler 6 (K6)36
6 items
5-point Likert scale asks caregivers how often they have experienced six symptoms over the last 30 days from 0 (none of the time) to 4 (all of the time). Total score is calculated by summing the responses. A score of 13 and above indicates serious mental illness.37.W1, W2Complete n=1000
Missing n=184
Carer burden/stress‘Impact of care-giving on carer’
Survey of Informal Carers in Households 2009/201038
7 items
Items ask individuals whether certain aspects of their lives have been affected by caring for another (Yes or No). Totals are generated for the responses, and higher scores indicate higher carer burden/stress.W1, W2Complete n=963
Missing n=221
Life satisfactionLife satisfaction scale39
1 item
Single item measure that asks caregivers to rate their general life satisfaction from 1 (completely dissatisfied) to 10 (completely satisfied). Scores 6–10 indicate that respondents are ‘satisfied overall’. Scores 4 and below indicate that participants are ‘dissatisfied overall’.W1, W2Complete n=998
Missing n=186
Parent relationship—parent’s perception of relationship with their partner (if applicable)Disagreement over issues related to child40
1 item
This item asks caregivers to report on how often they disagree over issues relating to their child on a 6-point Likert scale (Never to More than once a day). There is also a response for ‘Can’t say’.W1, W2Complete n=771
No live-in partner n=226
Missing n=187
Happiness of relationship scale40
1 item
Caregivers are asked to rate how happy they are in their relationship from 1 (very unhappy) to 7 (very happy). There is also a response for ‘Can’t say’.W1, W2Complete n=771
No live-in partner n=226
Missing n=187
Family functioningFamily APGAR scale41
5 items
Adaptability, Partnership, Growth, Affection and Resolve (APGAR)
Respondents are required to rate the frequency of feeling satisfied with each parameter on a 3-point Likert scale, from 0 (hardly ever) to 2 (almost always). The scale is scored by summing the 5 items. A higher score indicates a greater degree of satisfaction with family functioning (8–10=highly functional, 4–7=moderately dysfunctional, 0–3=dysfunctional).W1, W2Complete n=993
Missing n=191
Sibling behavioural and emotional well-beingStrengths and Difficulties Questionnaire (SDQ) (Parent questionnaire)42
25 items
Subscales: emotional problems, conduct problems, hyperactivity/inattention, peer relationship problems, prosocial behaviour
Caregivers are asked to assess the extent to which each statement applies to the child based on the last 6 months using a 3-point rating scale (0=not true to 2=certainly true). The items are divided into 5 subscales. A total difficulties score can be obtained by summing the first four subscale scores: close to average (0–13), slightly raised (14–16), high (17–19) and very high (20–40).W1, W2Complete n=603
No sibling n=360
Missing n=221
Sibling relationshipSibling Relationship Questionnaire - Short Form (SRQ-SF) (Parent questionnaire) (revised)43
10 items
Adapted version using key items from two subscales of SRQ–SF:
warmth and closeness (6 items)
conflict (4 items)
Caregivers are asked about the sibling relationship on a 5-point Likert scale from 1 (very much) to 5 (extremely much). These items can then be used to derive measures that encapsulate positive or negative aspects of the sibling relationship.W1, W2SRQ warmth:
Complete n=596
No sibling n=360
Missing n=228
SRQ conflict:
Complete n=599
No sibling n=360
Missing n=225
Parenting attitudes and behavioursChild–parent relationship scale (CPRS)44
15 items
Conflict (8 items)
Closeness (7 items)
The caregiver states their feelings and beliefs about their relationship with their child and about the child’s behaviour towards them, by responding to statements on a 5-point Likert scale (1=Definitely does not apply to 5=Definitely applies). CPRS generates a separate score for the individual conflicts and closeness constructs by summing the scores in each subscaleW1, W2Closeness:
Complete n=978
Missing n=206
Conflict:
Complete n=983
Missing n=201
Alabama Parenting questionnaire (Parent form)45
12 items
Positive parenting (6 items) Inconsistent discipline (6 items)
Parents/caregivers are asked about their parenting behaviours on a five-point Likert scale (1=Never to 5=Always). The items in each scale are summed to obtain two scale scores.W1, W2Positive parenting:
Complete n=972
Missing n=212
Inconsistent discipline:
Complete n=961
Missing n=223
Parent–child activities index
5 items
This questionnaire was constructed for the purposes of this study. Some of the questions have been used in national UK surveys such as the Millennium Cohort Study, and where relevant, items were adapted to be more appropriate for families of children with ID. The questions ask about parent–child shared activities. Answers are provided on a five-point Likert scale (from 1=Not at all to 5=Every day).W1
Removed from W2 due to parental feedback.
Complete n=974
Missing n=210
  • W1 and W2 indicate wave 1 and wave 2.