Background
Aim
Methods
Target population
Development of the survey
Source of individual questions
Reliability, validity and pilot testing of the survey
Validity
Reliability
Pilot testing of survey
Dissemination of the Parental Needs Survey
Ethical considerations
Statistical analysis
Results
Domain one: Demographic details
Parent characteristics | n | % |
---|---|---|
Gender | ||
Mother | 275 | 91.4 |
Father | 26 | 8.6 |
Total | 301 | 100.0 |
Number of children with a rare disease | ||
1 | 259 | 86.0 |
2 | 36 | 12.0 |
3 or more | 6 | 2.0 |
Total | 301 | 100.0 |
Parent status of disease | ||
Diagnosed as a carrier/ full disease | 85 | 28.2 |
Suspected carrier/ full disease | 21 | 7.0 |
No carrier/disease | 195 | 64.8 |
Total | 301 | 100.0 |
Age | ||
15–24 | 8 | 2.7 |
25–34 | 84 | 27.9 |
35–44 | 131 | 43.5 |
45–54 | 66 | 21.9 |
55+ | 12 | 4.0 |
Total | 301 | 100.0 |
Country and region of residence | ||
Australia (total) | 285 | 100.0 |
Metropolitan/ City | 190 | 66.7 |
Rural/ Country area | 95 | 33.3 |
New Zealand (total) | 16 | 100.0 |
Metropolitan/ City | 10 | 62.5 |
Rural/ Country area | 6 | 37.5 |
Total | 301 | 100.0 |
Marital status | ||
Single/ Never married | 5 | 1.7 |
Married/ Defacto | 258 | 85.7 |
Widowed | 7 | 2.3 |
Separated/ Divorced | 31 | 10.3 |
Total | 301 | 100.0 |
Respondent’s employment status | ||
Of parent | ||
Full-time wage earner | 52 | 18.5 |
Part-time wage earner | 101 | 36.1 |
Non-wage earner | 127 | 45.4 |
Total | 274 | 100.0 |
Partner’s employment status | ||
Full-time wage earner | 184 | 79.6 |
Part-time wage earner | 24 | 10.4 |
Non-wage earner | 23 | 10.0 |
Total | 231 | 100.0 |
Variables | n | (%) | 95 % CI |
---|---|---|---|
Parents receiving little or no support from (n = 262) | |||
Government services (i.e., public hospitals) | 97 | (37.0) | 30.0–45.2 |
Non-governmental agencies (i.e., support groups) | 88 | (33.6) | 26.9–41.4 |
Family and friends | 78 | (29.8) | 23.5–37.2 |
Parents dissatisfied or extremely dissatisfied with support from health professionals | |||
Having a consistent team of health professionals taking overall responsibility for your child’s health (n = 251) | 65 | (25.9) | 20.0–33.0 |
The overall support that you get from health professionals for your child (n = 257) | 61 | (23.7) | 18.2–30.5 |
Feeling that you are part of a health care team looking after your child (n = 259) | 72 | (27.8) | 21.8–35.0 |
How much health professionals know about your child's disease (n = 259) | 140 | (54.1) | 45.5–63.8 |
Gaining a formal diagnosis for your child (n = 248) | 73 | (29.4) | 23.1–37.0 |
Help with family planning (n = 173) | 81 | (46.8) | 37.2–58.2 |
Parents in desperate need for information (n = 240) | |||
Information about my child’s disease | 102 | (42.5) | 34.7–51.6 |
Information on how my child will grow and develop | 134 | (55.8) | 46.8–66.1 |
Information on how to manage my child’s behaviour | 85 | (35.4) | 28.3–43.8 |
Information about services that are presently available for my child | 146 | (60.8) | 51.4–71.5 |
Information about services my child might receive in the future | 174 | (72.5) | 62.1–84.1 |
Parents in desperate need of support with | |||
The educational needs of my child (n = 231) | 80 | (33.3) | 27.5–43.1 |
Teaching my child about their disease (n = 218) | 49 | (20.4) | 16.6–29.7 |
Explaining my child’s disease to his or her siblings (n = 224) | 39 | (16.3) | 12.4–23.8 |
Explaining my child’s disease to my parents or relatives (n = 237) | 33 | (13.8) | 9.6–19.6 |
Responding when friends, neighbours, or others ask questions about my child (n = 237) | 39 | (16.2) | 11.7-22.5 |
Explaining my child’s disease to other children (n = 233) | 57 | (23.8) | 18.5-31.7 |
Explaining my child's disease to his/her educator and school (n = 233) | 58 | (24.2) | 18.9–32.2 |
Communicating with healthcare professionals (n = 238) | 40 | (16.7) | 12.0–22.9 |
Parents in desperate need for access to respite services (n = 239) | |||
Babysitters capable of caring for your child | 81 | (33.9) | 26.9–42.1 |
Formal respite care providers capable of caring for your child | 84 | (35.1) | 28.0–43.5 |
Day care program or preschool for your child | 49 | (20.5) | 15.2–27.1 |
School that is able to care for your child | 85 | (35.6) | 28.4–44.0 |
Parents in need of professional/expert support (n = 223) | |||
Marriage counsellor | 44 | (19.7) | 14.3–26.5 |
Psychological counsellor | 106 | (47.5) | 38.9–57.5 |
Financial advisor | 71 | (31.8) | 24.9–40.2 |
Social worker | 72 | (32.3) | 25.3–40.7 |
Genetic counsellor (for family planning advice) | 107 | (34.5) | 39.3–58.0 |
Domain two: Equity in care
“I don’t receive any support from government. I pay for all his therapies privately. There is no support groups around. And I have never met anyone else with the same condition as my son. Majority of family are just not interested in assisting or even getting to know my son” (Mother, child with Phelan-McDermid syndrome).
Domain three: Practical care needs
Domain four: About your relationships
“I think it has brought us closer together. We are going through something together that no one else really understands. We have had to rely upon one another and have learnt to appreciate each other more. We are stressed, tired and worried a lot of the time, but generally we are good supports for each other.” (Mother, child with 49 XXXXY syndrome)
“We sail like ships in the night. I am dealing with the caring and house so that my partner can work harder for the business to keep us financially afloat. We are utterly exhausted and we don't have money for holidays and have no time alone together.” (Mother, child with Chronic Intestinal Failure)
“It has strained us by not being able to give a normal life to our healthier children. It separates us into two families essentially.” (Mother, 2 children with mitochondrial encephalomyopathy, lactic acidosis and stroke-like episodes – MELAS)
Domain five: About your emotions
“I had a hard time coming to terms with her condition which put a strain on our marriage. Since her birth, I have suffered depression and have had episodes of extreme anxiety.” (Mother, child with Stickler syndrome)
Domain six: Summary
Univariate analysis a
| Multivariable analysis b
| |||||
---|---|---|---|---|---|---|
Variable | Odds Ratio O.R. | 95 % CI O.R. | Sig. | Odds Ratio O.R. | 95 % CI O.R. | Sig. |
Health professionals | 0.770 | 0.704–0.842 | <0.001 | 0.756 | 0.630–0.907 | 0.003 |
Information | 0.814 | 0.761–0.871 | <0.001 | |||
Education | 0.911 | 0.875–0.947 | <0.001 | |||
Confidence | 0.859 | 0.799–0.922 | <0.001 | 0.773 | 0.612–0.978 | 0.032 |
Financial | 0.846 | 0.773–0.926 | <0.001 | 0.847 | 0.729–0.984 | 0.030 |
Access supports | 0.674 | 0.592–0.766 | <0.001 | |||
Partner | 1.015 | 0.945–1.090 | 0.690 | |||
Emotions | 1.072 | 1.028–1.117 | 0.001 | 1.183 | 1.035–1.353 | 0.014 |
Siblings | 0.644 | 0.503–0.825 | <0.001 | |||
Friends | 0.535 | 0.413–0.692 | <0.001 | |||
Other parents | 0.702 | 0.544–0.906 | 0.007 | |||
Isolation | 0.542 | 0.426–0.689 | <0.001 |