Analysis of the Issues and Needs of Parents of Children With Developmental Disabilities in Japan Using Focus Group Interviews

10.1097/jnr.0000000000000093

Rie Wakimizu；Hiroshi Fujioka

developmental disability ； family ； parents ； quality of life social support

The Journal of Nursing Research

24卷1期（2016 / 03 / 01）

68 - 78

英文

Background: The number of Japanese children with developmental disabilities (DDs) has seen a steady increase in recent years. The parents and families of children with DD experience distress both at the time of DD diagnosis and afterward. Aim: This study aimed to elucidate the issues and needs of the parents of children with DD to facilitate the development of effective support strategies necessary to help the family handle the special needs of their child with DD. Methods: Japanese-speaking parents with children who were aged 3Y14 years and currently being treated in a hospital for DDs were invited to participate in one of three focus groups. A trained moderator led each 90-minute audio-recorded group using a semistructured interview guide. All transcripts were coded using thematic content analysis. Results: Six categories of parents’ significant issues were identified, with three of the categories classified as critical needs. Conclusions: The issues and needs identified in this study are useful for developing an effective family support program and a related performance framework. Key concerns include providing relevant information support, providing counseling and consultation support for parents and siblings, and providing resources to children with DD that are necessary to help them deal effectively with their disabilities.

1. Ministry of Health, Labour andWelfare, Japan. (2005). Establishment of the support law for people with developmental disorders. Retrieved from http://www.mhlw.go.jp/english/wp/wp-hw2/part2/p2c8s2.pdf
2. Aichi Support Center for Persons with Developmental Disorders, Japan. (2006). Basic needs related to autism and other developmental disorders and challenges for support: Materials based on consultation with the Aichi support center for persons with developmental disorders. Retrieved from https://www.pref.aichi.jp/hsc/asca/siryousitu/kadai.pdf (Original work published in Japanese)
3. Merton,R.K.,&Kendall, P. L. (1946). The focused interview. American Journal of Sociology, 51(6), 541-557. doi:10.1086/219886
4. Anderson, L. S.(2008).Predictors of parenting stress in a diverse sample of parents of early adolescents in high-risk communities.Nursing Research,57(5),340-350.
5. Fisman, S.,Wolf, L.(1991).The handicapped child: Psychological effects of parental, marital, and sibling relationships.Psychiatric Clinics of North America,14(1),199-217.
6. Fujii, S.、Hirose, Y.、Uekida, J.、Atsumi, Y.、Sasamori, H.、Oshiro, M.(2012)。Study on relationship between developmental disabilities and emotional disturbance and educational support-Focusing on measures to prevent secondary disabilities。NISE Bulletin，11
7. Furusho, J.、Kubagawa, T.、Satoh, H.、Shibata, R.、Nemoto, Y.、Matsuzaki, K.、Watanabe, S.(2006)。Study of the kid-KINDL questionnaire scores for childrenwith developmental disorders in normal classes and their parents。No To Hattatsu，38(3)，183-186。
8. Hiraiwa, M.(2009)。A statement about children's mental and behavioral issue。The Journal of Child Health，68，330。
9. Holloway, I.,Wheeler, S.(1996).Qualitative research for nurses.Oxford, UK:Blackwell Science.
10. Hsieh, R. L.,Hsueh, Y. M.,Huang, H. Y.,Lin, M. I.,Tseng, W. C.,Lee, W. C.(2013).Quality of life and impact of children with unclassified developmental delays.Journal of Paediatrics and Child Health,49(2),E116-E121.
11. Inada, N.(2010)。2009 Health and Labor Sciences Research Grant, Report of the Disability Health and Human Services Research Promotion Program2009 Health and Labor Sciences Research Grant, Report of the Disability Health and Human Services Research Promotion Program,未出版
12. Japan League on Developmental Disabilities(2013)。Hattatsu shougai hakusho。Tokyo, Japan:Akashi Shoten。
13. Kao, B.,Romeo-Bosch, L.,Plante, W.,Lobato, D.(2012).The experience of Latino siblings of children with developmental disabilities.Child: Care, Health and Development,38(4),545-552.
14. Karst, J. S.,Van Hecke, A. V.(2012).Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation.Clinical Child and Family Psychology Review,15(3),247-277.
15. Kawakita, J.(1967)。Thinking-creativity to develop。Tokyo, Japan:Chukoshinsho。
16. Koren, P. E.,DeChillo, N.,Friesen, B. J.(1992).Measuring empowerment in families whose children have emotional disabilities: A brief questionnaire.Rehabilitation Psychology,37(4),305-321.
17. Lederman, L. C.(1990).Accessing educational effectiveness: The focus group interviewas a technique for data collection.Communication Education,39(2),117-127.
18. Myers, C.(2007)."Please listen, it's my turn": Instructional approaches, curricula and contexts for supporting communication and increasing access to inclusion.Journal of Intellectual and Developmental Disability,32(4),263-278.
19. Nachshen, J. S.,Minnes, P.(2005).Empowerment in parents of school-aged childrenwith and without developmental disabilities.Journal of Intellectual Disability Research,49(12),889-904.
20. Peters, K.,Jackson, D.(2009).Mothers' experiences of parenting a child with attention deficit hyperactivity disorder.Journal of Advanced Nursing,65(1),62-71.
21. Raina, P.,O'Donnell, M.,Schwellnus, H.,Rosenbaum, P.,King, G.,Brehaut, J.,Wood, E.(2004).Caregiving process and caregiver burden: Conceptual models to guide research and practice.BMC Pediatrics,4,1.
22. Saito, K.(2011)。Care and support for truancy arising from developmental disorders。Tokyo, Japan:Gakken Kyoiku Shuppan。
23. Scarborough, A. A.,Lloyd, E. C.,Barth, R. P.(2009).Maltreated infants and toddlers: Predictors of developmental delay.Journal of Developmental and Behavioral Pediatrics,30(6),489-498.
24. Schuntermann, P.(2009).Growing up with a developmentally challenged brother or sister: A model for engaging siblings based on mentalizing.Harvard Review of Psychiatry,17(5),297-314.
25. Takahashi, S.(2008)。School maladjustment and problems of educational support for students with mild developmental disabilities: A survey of resource rooms for students with emotional disturbances in elementary and lower secondary schools in Tokyo。The Japanese Journal of Special Education，45，527-541。
26. Takayama, T.、Anme, T.(1998)。Theory and practice of the group interviewmethod:Howto understand information by qualitative research。Tokyo, Japan:Kawashima Shoten。
27. Tellegen, C. L.,Sanders, M. R.(2013).Stepping stones triple P-positive parenting program for childrenwith disability: A systematic review and meta-analysis.Research in Developmental Disabilities,34(5),1556-1571.
28. Wakimizu, R.(2012)。Survey on empowerment of families of children with special care needs: Comparison between children with severe physical and intellectual disabilities and children with developmental disabilities。The Journal of Ambulatory and General Pediatrics，15，25-30。
29. Wakimizu, R.、Fujioka, H.(2011)。Changes in family's anxiety and needs rearing children with severe motor and intellectual disabilities in the light of family empowerment process。Journal of SevereMotor and Intellectual Disabilities，36，147-155。
30. Wakimizu, R.,Fujioka, H.,Iejima, A.,Miyamoto, S.(2014).Effectiveness of the group-based positive parenting program, with Japanese families raising a child with developmental disabilities: A longitudinal study.Journal of Psychological Abnormalities in Children,3,113.
31. Yamada,A.,Suzuki, M.,Kato, M.,Suzuki, M.,Tanaka, S.,Shindo, T.,Furukawa, T. A.(2007).Emotional distress and its correlates among parents of children with pervasive developmental disorders.Psychiatry and Clinical Neurosciences,61(6),651-657.