Brief online surveys to monitor and evaluate facilitated peer support groups for caregivers of children with special needs Karen Wynter a, *, Karin Hammarberg a , Gina-Maree Sartore b , Warren Cann b , Jane Fisher a a Jean Hailes Research Unit, School of Public Health and Preventive Medicine, Monash University, Australia b Parenting Research Center, Australia 1. Background 1.1. Current evidence regarding peer support groups for parents and other carers of children with special needs Parents and other primary carers (henceforth referred to as ‘‘caregivers’’) of children with special needs provide constant, medically complex and emotionally demanding care for their dependent child(ren) at home, usually without any periods of regular relief from caregiving and often with little social recognition of their circumstances (Hartman, Radin, & McConnell, 1992). This carries adverse health and social consequences, including severe parental fatigue, compromised mental health and reduced quality of life (Bolch, Davis, Umstad, & Fisher, 2012; Emond & Eaton, 2004; Johnson & Kastner, 2005; MacDonald, 2008). Peer support is a term used widely to describe emotional and practical support exchanged between people who share similar experiences and has been shown to be particularly valuable for caregivers of children with special needs (Law, King, & Stewart, 2001; Solomon, Pistrang, & Barker, 2001). The opportunity to talk to other people who have similar life circumstances can reduce social isolation, increase self-acceptance, self-confidence, self- efficacy and sense of personal worth and assist parents to feel more competent in managing everyday problems (Davies & Hall, 2005; Solomon et al., 2001). Shilling et al. (2013) conducted a systematic review of 17 quantitative and qualitative studies on experiences of one- to-one and group peer support for parents of children with special needs. They found evidence from qualitative studies of benefits of peer support in general, for example shared social identity and the opportunity to learn practical information and be inspired by others. These benefits were found to be consistent across children’s medical conditions, and across one-to-one and group peer support contexts. However, the review (2013) concluded that quantitative studies did not show strong evidence of these perceived benefits, and there was little data from parents who had had a negative experience of peer support. Of the 17 studies included in this review, most assessed one-to- one peer support. Only five pertained to peer support groups. These studies (Bull, 2003; Kingsnorth, Gall, Beayni, & Rigby, 2011; Law Evaluation and Program Planning 49 (2015) 70–75 A R T I C L E I N F O Article history: Received 12 June 2014 Received in revised form 9 December 2014 Accepted 10 December 2014 Available online 24 December 2014 Keywords: Peer support groups Parents of children with special needs Monitoring and evaluation Disability Caregiver A B S T R A C T Background: There have been few systematic evaluations of experiences of participating in peer support groups for parents and other caregivers of children with special needs. In Australia, facilitated groups are available to caregivers in community settings, through a nationally funded program, MyTime. Mechanisms for ongoing monitoring and evaluation have not yet been instituted. Aim: To establish whether brief, online surveys can be used for monitoring and evaluating peer support groups for caregivers of children with special needs. Methods: Two brief, online surveys, with both fixed-choice and open-ended questions, were developed. All caregivers who attended any MyTime group during a 1-month period were invited to participate. Results: Of 89 caregivers who expressed interest in participating, 54 and 31 respondents completed respectively. Respondents represented a variety of backgrounds and circumstances. Responses revealed both positive and negative aspects of group participation. Linked data on expectations and experiences provided important feedback for the program. Conclusion: Brief, online surveys are a suitable mechanism for ongoing monitoring and evaluation of peer support group programs for caregivers. ß 2014 Elsevier Ltd. All rights reserved. * Corresponding author at: Jean Hailes Research Unit, School of Public Health and Preventive Medicine, Monash University, Level 6, The Alfred Centre, 99 Commercial Road, Prahran 3004, Victoria, Australia. Tel.: +61 399030297. E-mail address: karen.wynter@monash.edu (K. Wynter). Contents lists available at ScienceDirect Evaluation and Program Planning jo ur n al ho m ep ag e: www .els evier .c om /lo cat e/evalp r og p lan http://dx.doi.org/10.1016/j.evalprogplan.2014.12.019 0149-7189/ß 2014 Elsevier Ltd. All rights reserved.