Table 4 Top ranked items with expert opinion on item grouping and descriptors

Eating

Eating and growth could be combined to form one new item of eating. Descriptor suggestions for eating varied across the age group with the older age group again having a focus on independent feeding. Some of the descriptors suggested for the younger age group were applicable across the age group to indicate more about the health status of the child together with growth. These included the child’s ability to suck or chew and swallow as well as the absence of subsequent, gagging, reflux or aspiration. Another important indicator for health was suggested as the ability to feed comfortably without fatigue or fussiness.

Growth

Eating (adequate oral intake to sustain growth).

Play

Usual activities for children in these age groups was play and thus the items could be merged. The repertoire of skills for play was directly dependent on age and the achievement of gross and fine motor skills as well as interaction with others. The interaction with others for play progresses from the caregiver initiating play in the youngest age group, to playing alongside other children for children aged 12–24 months to interactive play for children 24–36 months. Play was further described as being enjoyable and mostly involving objects or toys.

Play (Enjoys playing with objects or toys)

Usual Activities

Relationships

Socializing formed part of relationships and the two items could be merged. Descriptors of relationships included the response and reciprocal interaction between the very young child and their mother/significant carer. This later into the ability of the child to communicate basic needs to their carer and their ability to respond with affection to family and close friends. This bond with family and close friends was thought to strengthen as the child advances in age.

Relationships (Interacts with family members in an age-appropriate manner)

Socializing

Behaviour

Inclusion of behaviour was only considered important after 12 months of age. Behaviour was thought to indicate health, absence of pain and happiness. Another element of behaviour was suggested as appropriate responses to people, environment and activities.

Behaviour (Aware of different situations and able to respond appropriately to new places and people)

Communication

Communication was described in terms of verbal and non-verbal communication. Descriptors included examples of communication as well as the ability to make one’s needs known to the family or the world. The descriptors suggested for children under 12 months were focused on some of the elements of communication with reciprocal interaction with individuals and the child’s subsequent enjoyment thereof. After 12 months the ability to (verbally) communicate needs to their carer became important. There was also an emergence of interaction with other children (socialising) but the emphasis remained on good interaction with family. After 24 months interaction with other children emerged to a stronger degree.

Communication

(0–6 months: cooing, squealing, eye contact, smiling) (7–12 months: ‘gaga’ uses gestures like pointing) (12–19 months: single words) (19–24 months: puts two words together)(25–36 months: starts telling stories)

Independence

Independence was only ranked as important for children 24–36 months of age. Examples given for independence included self-care activities such as washing, dressing, toileting as well as becoming independent in a known environment.

Helping with daily activities (Age appropriate assistance with washing, dressing and toileting)

Mood

The importance of the dimension was justified in terms of happiness or unhappiness, sadness and crying. There was a suggested element of consolability or ability to control/regulate to these emotions or moods with regards to a child becoming irritable when tired or hungry, and judgement would need to be made when not irritable for these reasons. Mood or emotions seemed to further form the basis of interaction with both the caregiver and the environment. Behaviours of crying and smiling were suggested to be good descriptors for this dimension.

Controlling Emotions (settles easily with familiar people, touch or sound)

Movement

Age specific movement is one of the observable characteristics of milestone achievement in young children and thus the two items could be combined. The movement descriptors suggest free, smooth and functional movement of all four of the limbs. They are however age specific suggestions with specific limb movements or higher functioning movement for older children such as running and use of hands.

Movement (0–1 month: grasping, sucking) (2–5 months: plays while on tummy) (6–7 months: sitting)(9–11 months: crawling and standing) (12–36 months: walking)

Achievement of Milestones

Pain

Pain is generally non-specific in younger children and the caregiver needs to determine whether the child is expressing distress due to pain or other issues such as hunger or tiredness. Pain could be judged in a child by the persistence of their crying, their interaction with the environment, facial grimacing or general discomfort. In the verbal child, it is usually easier to establish the presence of pain. Pain is also said to have emotional and physiological effects.

Pain (painful behaviour includes: grimace, restless movement, inconsolable cry)

Sleeping

Descriptors of sleep included the ability to fall asleep, the quality and duration of sleep according to age appropriate requirements.

Sleeping (falls asleep easily, has restful uninterrupted sleep and enough sleep) (0–3 months: 16–20 h a day) (3–6 months 15–16 h a day) (6–12 months: 11–14 h a day) (12–36 months: 10–13 h a day)

Sickness

Sickness was considered as a general descriptor for anything which may affect the health of a child or an indicator of general health. Thus sickness, regardless of magnitude, would in effect negatively affect the child’s overall HRQoL.

Visual Analogue Scale measuring general health from 0 to 100