An Evaluation of Dyadic Peer Support for Caregiving Parents of Children with Chronic Lung Disease Requiring Technology Assistance

Abstract

This study evaluated a dyadic peer support pilot intervention for parents of technology-assisted children with chronic lung disease. These medically-fragile children, living at home in the primary care of their parents, require continuous or intermittent assistance from technological support such as home oxygen, respiratory or cardiac monitors and/or mechanical ventilators. The intervention consisted of matching parents with similar caregiving responsibilities, in order to reciprocally engage in parent-to-parent support. Results identified mixed outcomes based on quantitative and qualitative methods. Participants conveyed benefits and limitations of this modality of peer-based support. They generally favoured peer support as a clinical resource for caregiving parents as the intervention offered a valued opportunity for mutual sharing with another parent who could understand the unique realities particular to caring for a medically-fragile child. Sharing daily experiences was reported to reduce isolation, increase knowledge, and provide an important sense of feeling understood. Challenges associated with peer support included scheduling difficulties and personality incompatibility. Recommendations for program development in clinical settings are described.

Peer support for parents of disabled children part 1: perceived outcomes of a one‐to‐one service, a qualitative study

“…The findings support those of previous studies highlighting the importance of shared experience, (Ainbinder et al 1998, Bull 2003, Kerr and McIntosh 2000, Kingsnorth et al 2011, Law et al 2001, Lo 2010, Nicholas and Keilty 2007, Rearick et al 2011, Solomon et al 2001) and learning through the experience and support of others (Ainbinder et al 1998, Bull 2003, Kerr and McIntosh 2000, Kingsnorth et al 2011, Law et al 2001, Rearick et al 2011). These themes reflect the informational, affirmational and emotional support described elsewhere (Sullivan-Bolyai et al 2010, Sullivan-Bolyai and Lee 2011, Ireys et al 1996.…”

“…For parents who support others, the satisfaction gained from helping other people (Ainbinder et al 1998, Kerr and McIntosh 2000, Lo 2010, Sullivan-Bolyai and Lee 2011 and the desire to give something back (Solomon et al 2001, Nicholas and Keilty 2007, Law et al 2001, Jenkinson et al 2013) has been highlighted and is consistent with research in other populations on the benefits derived from offering support to others, known as the helper-therapy principle (Solomon 2004, Salzer andShear 2002).…”

Brief online surveys to monitor and evaluate facilitated peer support groups for caregivers of children with special needs

“…Consistent with evidence generated in lengthier qualitative interviews with caregivers who participated in MyTime groups (Hammarberg et al, 2014), most caregivers who responded to the online survey reported significant benefit from participation, including social support from people in similar situations, access to relevant information and ideas and having ''time out''. These themes are congruent with the stated aims of MyTime, and with existing evidence about benefits of peer support for parents and other caregivers of children with special needs (Ainbinder et al, 1998;Bull, 2003;Kerr & McIntosh, 2000;Kingsnorth et al, 2011;Law et al, 2001;Lo, 2010;Nicholas & Keilty, 2007;Solomon et al, 2001). Negative experiences of participation mentioned by respondents to the online survey were also similar to the barriers to participation which emerged from the interviews (Hammarberg et al, 2014), including diversity in group members' socio-economic position and in severity of their children's disabilities.…”

“…Negative experiences of participation mentioned by respondents to the online survey were also similar to the barriers to participation which emerged from the interviews (Hammarberg et al, 2014), including diversity in group members' socio-economic position and in severity of their children's disabilities. Negative experiences of support groups have previously been underreported in quantitative studies (Shilling et al, 2013) although some qualitative studies have identified similar barriers to successful participation in peer support (Ainbinder et al, 1998;Nicholas & Keilty, 2007). Collecting information about less positive experiences of peer support groups is essential for continuous quality improvement of such programs.…”

Internet y psicología clínica : revisión de las ciber-terapias

“…Finalmente también se pueden señalar intervenciones específi cas en: (a) relajación (Williamson, et al, 2006), (b) psicología de la emergencia y desastres (Ruggiero, et al, 2006), (c) estudios de casos en problemáticas conyugales y escolares (Pollock, 2006), (d) violencia doméstica (Giardina, 2006), (e) disfunción eréc-til (Nicholas y Keilty, 2007), y (e) profesionales de la salud que trabajaban en una unidad de pacientes terminales o que atendían a familias que habían sufrido una pérdida (Bischoff et al, 2004).…”