Objective. To determine the information needs of parents of children with attention-deficit/hyperactivity disorder (ADHD). Method. A cross-sectional survey of parents recruited from pediatric hospital clinics, support groups, and newspaper advertisements in Victoria, Australia, was undertaken. Parents completed a questionnaire covering information sources accessed, the quality of this information, the information content they considered important and their preferred information modes. Results. Survey data were collected from 99 parents. Parents most frequently accessed information from pediatricians (89%), books (78%), general practitioners (65%), and schools (61%). Pediatricians were rated highest as a useful, trusted, easy-to-understand, and up-to-date information source. Parents placed most importance on causes and symptoms at the time of diagnosis. Parents preferred to receive verbal information from a professional (69%). Conclusion. Information provision for parents of children with ADHD is a continuous process. Although they access a range of sources and modes, parents prefer verbal information delivery.
Beresford B.Positively Parents: Caring for a Severely Disabled Child. London, UK: Her Majesty’s Stationary Office; 1994.
2.
Chamba R., Ahmad W., Hirst M., Lawton D., Beresford B.On the Edge: A National Survey of Minority Ethnic Parents Caring for a Severely Disabled Child. West Sussex, UK: Bristol Policy Press;1999.
3.
Fisher HRThe needs of parents with chronically sick children: a literature review. J Adv Nurs. 2001;36:600-607.
4.
Noyes J.Voices and Choices: Young People Who Used Assisted Ventilation: Their Health and Social Care and Education. London, UK: Stationery Office;1999.
5.
Quine L., Pahl J.Stress and Coping in Families Caring for a Child With Severe Mental Handicap . Canterbury, UK: Institute of Social and Applied Psychology and Centre for Health Studies, University of Kent; 1989.
6.
Sloper P.Service needs of families of children with severe physical disability. Child Care Health Dev.1992;18:259-282.
7.
Dale N.Working WithFamilies of Children With Special Needs: Partnership and Practice. London, UK: Routledge;1996.
8.
Philip M., Duckworth D.Children With Disabilities and Their Families. London, UK: NFER/Nelson; 1982.
9.
Pain H.Coping with a child with disabilities from the parents’ perspective: the function of information. Child Care Health Dev. 1999;25:299-312.
10.
Bruegel R.Patient empowerment: a trend that matters. J AHIMA. 1998;69:30-33.
11.
World Health Organisation.Ottawa charter for health promotion. http://www.who.int/hpr/NPH/docs/ottawa_charter_hp.pdf.
12.
Institute of Medicine.Health Literacy: A Prescription to End Confusion. Washington, DC: Institute of Medicine, Board on Neuroscience and Behavioral Health, Committee on Health Literacy; 2004.
13.
Darbyshire P.Empowering parents of children with special needs. Nurs Times. 1995;91:26-28.
14.
Rodwell C.An analysis of the concept of empowerment. J Adv Nurs. 1996;23:305-313.
15.
Coulter A.Sharing decisions with patients: is the information good enough? Br Med J. 1999;18:318-322.
16.
Mitchell W. , Sloper P.Information that informs rather than alienates families with disabled children: developing a model of good practice. Health Soc Care Community. 2002;10:74-81.
17.
Rahi JS, Manaras I., Barr K.Information sources and their use by parents of children with ophthalmic disorders . Invest Ophthalmol Vis Sci. 2003;44:2457-2460.
18.
DeShazo BT, Lyman RD, Klinger LGAcademic under-achievement and attention-deficit/hyperactivity disorder: the negative impact of symptom severity on school performance. J Sch Psychol. 2002;40:259-283.
19.
Biederman J. , Farone S., Milberger S., Guite J., Mick E., Chen L.A prospective 4-year follow-up study of attention-deficit hyperactivity and related disorders. Arch Gen Psychiatry. 1996;53:437-446.
20.
Rappley MDAttention deficit-hyperactivity disorder. N Engl J Med. 2005;352:165-173.
21.
Ghanizadeh A.Educating and counseling of parents of children with attention-deficit hyperactivity disorder. Patient Educ Couns. 2007;68:23-28.
22.
Brook U., Boaz M.Attention deficit and hyperactivity disorder/learning disabilities (ADHD/LD): parental characteristics and perception. Patient Educ Couns . 2005;57:96-100.
23.
Eysenbach G. , Powell J., Kuss O., Sa EREmpirical studies assessing the quality of health information for consumers on the World Wide Web: a systematic review . JAMA. 2002;287:2691-2700.
24.
Khoo K., Bolt P., Babl FE, Goldman RDHealth information seeking by parents in the Internet age. J Paediatr Child Health. 2008;44:419-423.
25.
Sawyer MG, Arney FM, Baghurst PA, Clark JJ, Graetx BW, Kosky RJThe mental health of young people in Australia: key findings from the child and adolescent component of the national survey of mental health and well-being . Aust N Z J Psychiatry. 2001;35:806-814.
26.
Brook U., Watemburg G., Geva D.Attitude and knowledge of ADHD and learning disability among high school teachers . Patient Educ Couns. 2000;40:247-252.
27.
Bussing R., Gary FA, Leon CE, Wilson-Garvan C., Reid R.General classroom teachers’ information and perceptions of attention deficit hyperactivity disorder. Behav Disord. 2002;27:327-339.
28.
Jerome L., Gordon M., Hustler P.A comparison of American and Canadian teacher’s knowledge and attitudes towards ADHD. Can J Psychiatry. 1994;39:563-567.
29.
Kasten EF, Coury DL, Heron TEEducators’ knowledge and attitudes regarding stimulants in the treatment of ADHD. J Dev Behav Pediatr. 1995;16:238-243.
30.
Roy M.Information needs of parents about learning disabilities. J Learn Disabil. 2003;7:211-219.
31.
Jackson R., Baird W., Davis-Reynolds L., Smith C., Black-burn S., Allsebrook J.Qualitative analysis of parents’ information needs and psychosocial experiences when supporting children with health care needs. Health Soc Care Community. 2008;25:31-37.
32.
Ley P.Improving Patients’ Understanding, Recall, Satisfaction and Compliance. Health Psychology: Processes and Applications. London, UK: Chapman & Hall; 1989.
33.
Sandler D., Mitchell J., Fellows A., Garner S.Is an information booklet for patients leaving hospital helpful and useful ? Br Med J. 1989;298:870-874.
34.
Peterson S. , Michas M., Villejo L.Evaluation of a learning resource for cancer patients. Health Educ Res. 1989;4: 495-500.
35.
D’Alessandro DM, Dosa NPEmpowering children and families with information technology. Arch Pediatr Adolesc Med. 2001 ;155:1131-1136.
36.
Kind T., Huang ZJ, Farr D., Pomerantz KLInternet and computer access and use for health information in an underserved community. Ambul Pediatr. 2005;5:117-121.
37.
Tuffrey C., Finlay F.Use of the Internet by parents of pediatric outpatients. Arch Dis Child. 2002;87:534-536.
38.
Wainstein BK , Sterling-Levis K., Baker SA, Taitz J., Brydon M.Use of the Internet by parents of pediatric patients. J Paediatr Child Health.2006;42:528-532.
