Table 4.
“Sometimes or less”; percent responses ≥ 33%*
| Question # | Questions ordered by scale | % SCP responding “sometimes or less” N = 98 | % non-SCP responding “sometimes or less” N = 116 |
|---|---|---|---|
| Scale 1: Enabling and Partnership | |||
| 2 | fully explain treatment choices to you | 24.00% | 18.10% |
| 3 | offer you positive feedback or encouragement (e.g., in carrying out a home program) | 21.30% | 27.80% |
| 8 | tell you about options for treatment or services for your child | 32.60% | 37.50% |
| 12 | trust you as the “expert” on your child | 22.40% | 30.20% |
| 15 | anticipate your concerns by offering information even before you ask | 36.10% | 45.20% |
| 16 | make sure you have a chance during visits to the hospital to say what is important to you | 23.50% | 31.00% |
| 17 | let you choose when to receive information and the type of information you want | 29.00% | 33.30% |
| 19 | tell you about the reasons for treatment or equipment | 20.00% | 25.00% |
| 22 | provide opportunities for you to make decisions about treatment | 19.10% | 25.00% |
| 23 | answer your questions completely | 11.20% | 22.40% |
| 25 | recognize that your family has the final say when making decisions about your child’s treatment | 17.70% | 22.80% |
| 28 | consult with you when discussing equipment or services | 18.90% | 21.90% |
| 30 | tell you details about your child’s services, such as the reasons for them, the type of therapies and the length of time | 22.10% | 26.70% |
| 35 | make sure you have opportunities to explain what you think are important treatment goals | 24.20% | 34.50% |
| 36 | make you feel like a partner in your child’s care | 22.70% | 30.10% |
| 43 | listen to what you have to say about your child’s needs for equipment, services, etc. | 18.90% | 26.40% |
| Scale 2: Providing General Information | |||
| 46 | The hospital has information available to you in various forms, such as a booklet, kit, video, etc. | 27.10% | 34.80% |
| 48 | The hospital gives you information about the types of services it offers | 33.30% | 38.40% |
| 49 | The hospital promotes family-to-family gatherings for social, informational or shared experiences | 42.60% | 49.00% |
| 50** | The hospital provides opportunities for special guests to speak to parents on topics of interest | 47.70% | 58.50% |
| 51 | The hospital provides support to help cope with the impact of childhood disability | 41.10% | 54.90% |
| 53 | The hospital has information available about your child’s disability | 33.30% | 42.50% |
| 54 | The hospital provides advice on how t o get information or to contact other parents (e.g. parents resource library) | 38.50% | 61.30% |
| 55 | The hospital provides opportunities for the entire family to obtain information | 45.60% | 53.10% |
| 56 | The hospital has general information available about different concerns (e.g., financial costs or assistance, genetic counseling, dating and sexuality) | 41.90% | 56.60% |
| Scale 3: Providing Specific Information About the Child | |||
| 24** | explain what they are doing when you are watching your child in therapy | 16.00% | 20.80% |
| 26 | tell you about the results from assessments | 16.50% | 28.70% |
| 27** | provide you with written information about what your child is doing in therapy. | 27.80% | 47.10% |
| 39 | provide you with written information about your child’s progress | 40.90% | 49.10% |
| 52** | The hospital notifies you about the reasons for upcoming case conferences, meetings, etc. | 47.60% | 47.80% |
| Scale 4: Coordinated and Comprehensive Care | |||
| 1** | suggest therapy plans that fit with your family’s needs and lifestyle | 31.30% | 29.70% |
| 4** | explain things to your child in a way that your child understands | 18.50% | 24.30% |
| 5 | take the time to establish rapport with you or your child when changes occur in your services | 28.00% | 32.10% |
| 6 | discuss with you everyone’s expectations for your child, so that all agree on what is best | 29.00% | 33.00% |
| 7 | make sure that your child’s skills are known to all persons working with your child, so the skills are carried across services and service providers | 31.90% | 37.00% |
| 10 | provide ideas to help you work with the healthcare system | 32.60% | 43.40% |
| 11 | recognize the demands of caring for a child with special needs | 25.00% | 33.30% |
| 13 | look at the needs of your “whole” child instead of just a physical needs | 24.70% | 36.20% |
| 14 | show sensitivity to your family’s feelings about having a child with special needs | 19.60% | 36.00% |
| 20 | follow u p at the next appointment on any concerns you discussed at the previous one | 25.00% | 34.80% |
| 21 | make sure that at least one team member is someone who works with you and your family over a long period of time | 25.50% | 29.20% |
| 32 | develop both short-term and long-term goals for your child | 29.20% | 33.60% |
| 34 | plan together so they are all working in the same direction | 27.70% | 34.50% |
| 37 | make sure you are informed ahead of time about any changes in your child’s care | 33.70% | 33.30% |
| 40 | seem aware of your child’s changing needs as he/she grows | 26.10% | 30.90% |
| 44 | make themselves available to you as a resource | 22.70% | 38.90% |
| 45 | give you information about your child that is consistent from person to person | 29.50% | 40.70% |
| Scale 5: Respectful and Supportive Care | |||
| 9 | accept you and your family in a non-judgmental way | 9.40% | 19.30% |
| 18 | remember personal details about your child or family when speaking with you | 20.40% | 33.60% |
| 29 | provide a caring atmosphere rather than just give you information | 19.40% | 33.00% |
| 31 | treat you as an individual rather than as a “typical” parent of a child with a disability | 22.90% | 28.80% |
| 33 | treat you as an equal rather than just as the parent of a patient | 39.20% | 44.70% |
| 38 | help you feel competent as a parent | 18.80% | 30.70% |
| 41 | provide enough time to talk so you don’t feel rushed | 18.60% | 34.20% |
| 42 | treat you and your family as people rather than as a “case” | 18.80% | 20.20% |
| 47 | The hospital has support staff that are polite and courteous to you and your family | 9.30% | 20.20% |
*
The bold-type percentages indicate that the question received a rating of "sometimes or less” (numerical ratings from 1 through 4) 33% or more of the time [6].
**
Non-response rates per question were generally low (< 5%); > 15% non-response for SCP group was noted in questions 1, 4, 24, 27, 52; for non-SCP questions 4, 24, 27, 50, 52. MPOC questions reproduced with permission.