Facilitating support groups for siblings of children with neurodevelopmental disorders using audio-conferencing: a longitudinal feasibility study

Sheryl Gettings, Fabia Franco, Paramala J Santosh, Sheryl Gettings, Fabia Franco, Paramala J Santosh

Abstract

Background: Siblings of children with chronic illness and disabilities are at increased risk of negative psychological effects. Support groups enable them to access psycho-education and social support. Barriers to this can include the distance they have to travel to meet face-to-face. Audio-conferencing, whereby three or more people can connect by telephone in different locations, is an efficient means of groups meeting and warrants exploration in this healthcare context. This study explored the feasibility of audio-conferencing as a method of facilitating sibling support groups.

Methods: A longitudinal design was adopted. Participants were six siblings (aged eight to thirteen years) and parents of children with complex neurodevelopmental disorders attending the Centre for Interventional Paediatric Psychopharmacology (CIPP). Four of the eight one-hour weekly sessions were held face-to-face and the other four using audio-conferencing. Pre- and post-intervention questionnaires and interviews were completed and three to six month follow-up interviews were carried out. The sessions were audio-recorded, transcribed and thematic analysis was undertaken.

Results: Audio-conferencing as a form of telemedicine was acceptable to all six participants and was effective in facilitating sibling support groups. Audio-conferencing can overcome geographical barriers to children being able to receive group therapeutic healthcare interventions such as social support and psycho-education. Psychopathology ratings increased post-intervention in some participants. Siblings reported that communication between siblings and their family members increased and siblings' social network widened.

Conclusions: Audio-conferencing is an acceptable, feasible and effective method of facilitating sibling support groups. Siblings' clear accounts of neuropsychiatric symptoms render them reliable informants. Systematic assessment of siblings' needs and strengthened links between Child and Adolescent Mental Health Services, school counsellors and young carers groups are warranted.

Keywords: Autism Spectrum Disorder; Behavioural problems; Chronic illness; Complex neurodevelopmental disorders; Neurodisability; Sibling; Support group; Telemedicine; Young carer.

References

    1. Costello EJ, Egger H, Angold A. 10-year research update review: the epidemiology of child and adolescent psychiatric disorders: 1. Methods and public health burden. J Am Acad Child Adolesc Psychiatry. 2005;44(10):972–86. doi: 10.1097/01.chi.0000172552.41596.6f.
    1. Russell G, Rodgers LR, Ukoumunne OC, Ford T. Prevalence of parent-reported ASD and ADHD in the UK: findings from the millennium cohort study. J Autism Dev Disord. 2014;44:31–40. doi: 10.1007/s10803-013-1849-0.
    1. Harding R. Children with cancer: the needs of siblings. Prof Nurse. 1996;11(9):588–90.
    1. Hastings RP. Brief report: behavioural adjustment of siblings of children with Autism. J Autism Dev Disord. 2003;33(1):99–104. doi: 10.1023/A:1022290723442.
    1. Sharpe D, Rossiter L. Siblings of children with a chronic illness: a meta-analysis. J Pediatr Psychol. 2002;27(8):699–710. doi: 10.1093/jpepsy/27.8.699.
    1. Meyer DJ, Vadasy PF. Sibshops: Workshops for Siblings of Children with Special Needs. Revised. Baltimore: Paul H Brookes Publishing Company; 2008.
    1. Williams PD, Piamjariyakul U, Graff JC, Stanton A, Guthrie AC, Hafeman C, et al. Developmental disabilities: effects on well siblings. Issues Compr Pediatr Nurs. 2010;33(1):39–55. doi: 10.3109/01460860903486515.
    1. Murray JS. Siblings with cancer: a review of the literature. J Pediatr Oncol Nurs. 1999;16(1):25–34.
    1. Russell CL, Russell CM, Russell ME. We’re here too! supporting “sibs” of children with special needs. Exceptional Parent. 2003;33(6):36–9.
    1. Department for Children, Schools and Families; Department of Health (GB): Improving the psychological wellbeing and mental health of children and young people: Commissioning early intervention support services []
    1. Hewitt-Taylor J. Providing Support at Home for Children and Young People Who Have Complex Health Needs. Chichester: John Wiley & Sons, Ltd; 2008.
    1. Cox AH, Marshall ES, Mandleco B, Olsen SF. Coping responses to daily life stressors of children who have a sibling with a disability. J Fam Nurs. 2003;9(1):397–413. doi: 10.1177/1074840703258328.
    1. Macks RJ, Reeve RE. The adjustment of non-disabled siblings of children with autism. J Autism Dev Disord. 2007;37:1060–7. doi: 10.1007/s10803-006-0249-0.
    1. Hartling L, Milne A, Tjosvold L, Wrightson D, Gallican J, Newton A. A systematic review of interventions to support siblings of children with chronic illness of disability. J Paediatr Child Health. 2014;50(10):E26–38. doi: 10.1111/j.1440-1754.2010.01771.x.
    1. Fleitas J. When Jack fell down… Jill came tumbling after: siblings and the web of illness and disability. Am J Matern Child Nurs. 2000;25(5):267–253. doi: 10.1097/00005721-200009000-00010.
    1. Barak-Levy MA, Goldstein E, Weinstock M. Adjustment characteristics of healthy siblings of children with autism. J Fam Stud. 2010;16(2):155–64. doi: 10.5172/jfs.16.2.155.
    1. HM Government (GB): No health without mental health: A cross-government mental health outcomes strategy for people of all ages []
    1. Becker S. Young Carers. In: Davies M, editor. The Blackwell Encyclopedia of Social Work. Oxford: Blackwell; 2000. p. 378.
    1. Office for National Statistics. Providing unpaid care may have an adverse affect on young carers’ general health []
    1. Becker S. Global perspectives on children’s unpaid caregiving in the family: research and policy on ‘Young Carers’ in the UK, Australia, the USA and Sub-Saharan Africa. Global Social Policy. 2007;7(1):23–50. doi: 10.1177/1468018107073892.
    1. British Broadcasting Corporation. “Hidden Army” of young carers could be four times as high as official figures []
    1. Hall HR. Families of children with autism: behaviours of children, community support and coping. Issues Compr Pediatr Nurs. 2012;35(2):111–32. doi: 10.3109/01460862.2012.678263.
    1. ChildLine; National Society for the Prevention of Cruelty to Children: Old Heads on Young Shoulders: Helping children and young people whose family circumstances force them into adult roles [Internet]. London: ChildLine; 2006. Available from: []
    1. ChildLine; National Society for the Prevention of Cruelty to Children: Saying the Unsayable: What's affecting children in 2012. []
    1. Hastings RP. Behavioural adjustment of siblings of children with autism engaged in applied behavior analysis early intervention programs: the moderating role of social support. J Autism Dev Disord. 2003;33(2):141–50. doi: 10.1023/A:1022983209004.
    1. McLinden SE, Miller LM, Deprey JM. Effects of a support group for siblings of children with special needs. Psychol Schools. 1991;28(3):230–7. doi: 10.1002/1520-6807(199107)28:3<230::AID-PITS2310280308>;2-D.
    1. Williams PD, Hanson S, Karlin R, Ridder L, Liebergen A, Olson J, et al. Outcomes of a nursing intervention for siblings of chronically ill children: a pilot study. J Spec Pediatr Nurs. 1997;2(3):127–37. doi: 10.1111/j.1744-6155.1997.tb00070.x.
    1. Evans J, Jones J, Mansell I. Supporting siblings: evaluation of support groups for brothers and sisters of children with learning disabilities and challenging behaviour. J Learn Disabil. 2001;5(1):69–78.
    1. Chan WL, Goh ECL. My parents told us that they will always treat my brother differently because he is autistic’ – Are siblings of autistic children the forgotten ones? J Soc Work Pract. 2014;28(2):155–71. doi: 10.1080/02650533.2013.844114.
    1. Houtzager BS, Grootenhuis MA, Last BF. Supportive groups for siblings of pediatric oncology patiesnts: impact on anxiety. Pycho-Oncol. 2001;10:315–24. doi: 10.1002/pon.528.
    1. Smith T, Perry A. A sibling support group for brothers and sisters of children with autism. J Dev Disabil. 2004;11(1):77–88.
    1. Ewertzon M, Cronqvist A, Lutzen K, Andershed B. A lonely life journey bordered with struggle: being a sibling of an individual with psychosis. Issues Ment Health Nurs. 2012;33(3):157–64. doi: 10.3109/01612840.2011.633735.
    1. Becker S, Becker F. Service needs and delivery following the onset of caring amongst children and young adults: Evidence based review. Commission for Rural Communities. []
    1. Reed RV, Fazel M, Jones L, PanterBrick C, Stein A. Mental health of displaced and refugee children resettled in low-income and middle-income countries: risk and protective factors. Lancet. 2012;379(9812):250–65. doi: 10.1016/S0140-6736(11)60050-0.
    1. United Nations Children’s Fund. The state of the world’s children: Children in an urban world []
    1. Wiener LS, Spencer ED, Davidson R, Fair C. National telephone support groups: a new avenue toward psychosocial support for HIV-infected children and their families. Soc Work Groups. 1993;16(3):55–71. doi: 10.1300/J009v16n03_05.
    1. Colón Y. Telephone support groups: a non-traditional approach to reaching underserved cancer patients. Cancer Pract. 1996;4(3):156–9.
    1. Ritchie J, Stewart M, Ellerton M, Thompson D, Meade D, Viscount PW. Parents’ perceptions of the impact of a telephone support group intervention. J Fam Nurs. 2000;6(1):25–45. doi: 10.1177/107484070000600103.
    1. Stewart MJ, Hart G, Mann K, Jackson S, Langille L, Reidy M. Telephone support group intervention for persons with hemophilia and HIV/AIDS and family caregivers. Int J Nurs Stud. 2001;38:209–25. doi: 10.1016/S0020-7489(00)00035-3.
    1. Moore WR. Lesbian and gay elders: connecting care providers through a telephone support group. J Gay Lesbian Soc Serv. 2002;14(3):23–41. doi: 10.1300/J041v14n03_02.
    1. Battles HB, Wiener LS, Lewis EM, Patel R, Grant SM. A telephone support group intervention for non-HIV-infected fathers of HIV-infected children. J HIV AIDS Soc Serv. 2003;2(1):63–78. doi: 10.1300/J187v02n01_05.
    1. Seidenberg P, Nicholson S, Schaefer M, Semrau K, Bweupe M, Masese N, et al. Early infant diagnosis of HIV infection in Zambia through mobile phone texting of blood test results. Bull World Health Organ. 2012;90(5):348–56. doi: 10.2471/BLT.11.100032.
    1. Yardley L. Demonstrating validity in qualitative psychology. In: Smith JA, editor. Qualitative Psychology: A Practical Guide to Research Methods. 2. London: Sage; 2008.
    1. Flick U. An Introduction to Qualitative Research. 5. Los Angeles: Sage; 2014.
    1. Gringras P, Santosh P, Baird G. Development of an Internet-based real-time system for monitoring pharmacological interventions in children with neurodevelopmental and neuropsychiatric disorders. Child Care Health Dev. 2006;32(5):591–600. doi: 10.1111/j.1365-2214.2006.00653.x.
    1. Santosh P. STOP study aims to monitor suicidality. EU Res. 2014;1:36–9.
    1. Goodman A, Goodman R. Strengths and difficulties questionnaire as a dimensional measure of child mental health. J Am Acad Child Adolesc Psychiatry. 2009;48(4):400–3. doi: 10.1097/CHI.0b013e3181985068.
    1. Goodman R. Psychometric properties of the strengths and difficulties questionnaire. J Am Acad Child Adolesc Psychiatry. 2001;40:1337–45. doi: 10.1097/00004583-200111000-00015.
    1. Vostanis P. Strengths and difficulties questionnaire: research and clinical applications. Curr Opin Psychiat. 2006;19(4):367–72. doi: 10.1097/01.yco.0000228755.72366.05.
    1. Varni JW, Seid M, Kurtin PS. PedsQL™4.0: reliability and validity of the pediatric quality of life inventory™version 4.0 generic core scales in healthy and patient populations. Med Care. 2001;39(8):800–12. doi: 10.1097/00005650-200108000-00006.
    1. Varni JW, Seid M, Rode CA. The PedsQL™: measurement model for the pediatric quality of life inventory. Med Care. 1999;37(2):126–39. doi: 10.1097/00005650-199902000-00003.
    1. O’Rourke K, Worzbyt JC. Support Groups for Children. Philadelphia: Accelerated Development; 1996.
    1. Heiney SP, McWayne J, Walker S, Bryant LH, Howell CD, Bridges BA. Evaluation of a therapeutic group by telephone for women with breast cancer. J Psychosoc Oncol. 2003;21(3):63–80. doi: 10.1300/J077v21n03_04.
    1. Yalom ID. The Theory and Practice of Group Psychotherapy. 5. New York: Basic Books; 2005.
    1. Charmaz K. Grounded theory. In: Smith JA, editor. Qualitative Psychology: A Practical Guide to Research Methods. 2. London: Sage; 2008.
    1. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. doi: 10.1191/1478088706qp063oa.

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