Coding System I 1 = 2 different peer-reviewed authors; 2=2 same peer- reviewed authors; 3=one peer reviewed article II 1=Available manual; 2=Unavailable manual III 1=Good reliability and validity; 2=Moderate/v ague reliability and validity Total Evaluation OSBD 1 1 1 W DPIS 1 1 1 W BAADS 1 1 2 A CAMPIS 1 1 1 W BAADS 1 1 2 A CAMPIS-R 1 1 1 W CAMPIS-SF 2 1 1 A MAISD 1 1 2 A P-CAMPIS 2 1 1 A Modified CAMPIS 2 1 2 A Parent Communication Typology 3 1 1 P Interpersonal Distance and Touch Coding 3 1 2 P CAMPIS-IV 3 1 1 P PACBIS 1 1 2 A CBCS-P 2 1 2 A GRIDS 3 1 1 P
Note: BAADS = Behavioral Approach-Avoidance and Distress Scale; CAMPIS = Child-Adult Medical Procedure Interaction Scale; CAMPIS-IV = CAMPIS-Infant version; CAMPIS-SF = CAMPIS-Short Form; CAMPIS-R = CAMPIS-Revised; CBCS-P = Child Behavior Coding System-Post Anesthesia Care Unit; DPIS = Dyadic
Prestressor Interaction Scale; GRIDS = Generation R Infant Distress Scale; MAISD = Measure of Adult and Infant Soothing and Distress; OSBD = Observational Scale of Behavioral Distress; PACBIS = Perioperative Adult Child Behavioral Interaction Scale; P-CAMPIS = Perioperative Child-Adult Medical Procedure Interaction Scale W= well-established; A= approaching well-established; P= promising
APPENDIX 3. PARENT CARING RESPONSE SCORING SYSTEM (P-CaReSS)
Domain Subdomain Specific code example Item
# Verbal (11 items) Knowing Striving to understand an event as it has meaning in the life of the child
Avoiding
assumptions/seeking cues: Respect the child’s decision, idea, and request; let the child participate in the procedure; understand the child’s thoughts or perceptions about the procedure
• Ask child’s opinion about the procedure;
• Let child make decision: choose what the child likes/wants;
• Let the child push the button;
• You want to push the button or you want me to do it?
• Are you ready?
• Can you put your arms up for me? Could you just put your arms here?
• Can I see your belly button?
• Can you get your mouth open?
• Are you hurting today?
• Is this going to poke?
• You smell that alcohol?
• Are you sleepy? You are so sleepy today, aren’t you?
• Do you feel better? are you okay, baby?
1
Being with
Being emotionally present to the child
Sharing feelings:
share joyfulness, happiness, excitement, or celebrations with the child
• I am happy for you;
• I am so proud for you;
• I felt great today;
• We have to celebrate we did it;
• I love ya!
2
Doing for
Doing for the child as he/she would do for oneself
Protecting: help child control the painful procedure or give control to the child
• You let me know, ok;
• Mum will hold your hand;
• I am here for you;
• Mum is here for you;
3
Comforting: entertain and distract strategies (Parent-To-Control)
• Humor;
• Telling stories;
• Do not think about it/look at me;
• Talking things unrelated to the procedure, (i.e., food, toys, pets, other family members et al.);
• Rewarding the child by promises;
• Ask the child to sleep/nap;
• Other comforting verbals, such as “Please calm down”;
Enabling Facilitating the child’s passage through life transitions and unfamiliar events Informing/explaining:
Give information and explain the procedure related to health history, disease, procedure
• They will flush your port quickly;
• Let us get the woody out of your body;
• It is the same thing you did before;
• You should let the tube put there;
• Pull the tube tightly;
• She will put the tape on your body;
• Now, it gonna be just a little bee sting
5
Validating: Reassure the child’s experience of the procedure and the progress of procedure
• It is ok;
• It is almost over;
• All done; that is it; it is almost the way out/almost;
• I know it is hard;
• I know you need help;
• I know it hurts;
• I know but you have to do it;
6
Supporting/Allowing: guide the child to use coping strategies (Child-To-Control )
• Let us count 1, 2, 3;
• Relaxation;
• Take a deep breath;
• Hold my hands/Pinch me when you feel the needle;
• Imagine you are a Spiderman and have the strength;
7
Maintaining belief
Sustaining faith in the child's capacity to get through an event or transition Believing in/holding in esteem: praise/acknowledge the child; show encouragement to the child
• You are a hero;
• Great job;
• You are doing great;
• You are a brave boy;
• You are a sweet heart/good boy;
• You have such a beautiful body;
8
Non-Caring
Showing less
parental physical and emotional
presence/engagement to the child; leading increasing burdens to the child;
Burdening by emotions/intrusive questions: express affective distress (e.g., distress, discomfort, disgust, restless, fear and avoidance)
• I am so anxious/worried/terrified;
• I hate this procedure a lot;
• Argue with the child;
• Are you scared/worried/anxious?
• Why do you cry?
• Why are you doing that?
• What are you crying for?
9
Apologizing: show sorrow and
responsibility for the painful procedure
• I am sorry, babe;
• I am sorry it will take so long;
• I wish I did not hurt you at all;
• I will not do this again for you;
10
Criticizing: imply the child’s fault or wrong- doings during the
• It is your fault;
• You are just a little bitch;
• Shut up;
procedure • That was not funny at all;
• You are making me crazy;
• You are a pain;
Other Non-procedure
related talk/questions
• Routine talk/greetings;
• School stuff not for distraction;
• Conservations unrelated to the procedure agenda;
• The whole day plan in the hospital or at home;
Nonverbal (6 items)
Being with Being there: show
their emotional presence by eye contact and closeness to them;
• Eye contact: a solid >2 seconds eye-to eye contact (Gaze);
1 • Distance close enough to touch the
child;
2
Doing for Comforting: entertain
and distract strategies (Parent-To-Control)
• Playing with the child;
• Using stuff animals or toys;
• Playing with video games/cards;
3
Enabling Supporting/allowing:
providing comforting body behaviors
• Preparing the child; give the mask; put up or take off clothes; help with the procedure toward the child; check and clean the port site; lift his arms; give water;
• Touch; hugging; kissing; cuddling; holding child hand; wiping child’s tears; patting butt;
• Positioning; repositioning; sitting on the laps;
•
4
Maintaining belief Believing in/holding in esteem
• Hand claps;
• High five;
5
Non-Caring Conveying less
availability
• Distance too far to touch;
• Playing with their phone;
• Ignoring the child’s talk;
• Let the child alone;
6
Emotional (1 item with three levels)
Caring • Warm, friendly, loving, tender; 1
• Happy, laughing, joking, joyful;
Neutral • Matter of fact, neutral; 2
Non-Caring • Anxious, nervous, scared, fear; 3
• Frustrated, depressed, exhausted, lost, sad;