Limbs 4 Kids: An update on the program evaluation

Dr Narelle Warren, School of Social Sciences, Monash University

Peer support offers well-documented benefits for people living with disability (Dennis, 2003; Arnstein et al., 2002), particularly in terms of improved psychosocial outcomes. Empowerment is a central factor for most involved in the delivery of peer-support (Fawcett et al., 1994), as an increased sense of self-efficacy (belief that you can make things happen if you wish) is often a product of peer-support. Reported benefits range from improved sense of community and belonging, self-confidence, self-esteem, and relationships with others to lowered rates of depression (Schwartz and Sendor, 1999; Stainback et al., 1994). Active engagement in peer-support has a bidirectional effect, offering positive outcomes for both the supporter (the person providing the support) and the supported. In reality, however, most people in a peer-support relationship take both roles, simultaneously giving and receiving some level of support and care.

The mission statement of Limbs 4 Life, and their peer-support programs reflect, this extensive literature. Since 2012, Limbs 4 Life has actively developed targeted programs for identified stakeholder groups. This commenced with the three-year nib Foundation-funded ‘Children, Carers, Youth’ (CCY) Program, a Victorian-focused support intervention aimed at supporting families of children and young people living with limb difference. The findings of this evaluation were then used to support a national roll-out of a program, Limbs 4 Kids.

The Children, Carers, Youth program

The CCY program design drew on Limbs 4 Life’s adult peer-support program, as well as on feedback from Parents/Carers who lacked support following the birth of their child with a limb deficiency indicating that they desired access to facilitated support.  Following consultation with key informants (including parents of children with limb difference), this was refined to respond to the particular needs of parents of children/adolescents with limb difference. The active participation of key stakeholders was central to the CCY program design in developing the key components of the program and in planning the program activities. Evaluations were conducted across three rounds between 2012 and 2014, drawing on online surveys and interviews.

Parent/carers who took part in the CCY evaluation identified the importance of a program such as this to help them attain three-related goals:

  1. Information-seeking about their child’s limb difference, in order to learn of the issues and challenges they could expect to encounter as their child developed. Participants perceived the advice and knowledge from other parent/carers (peer supports), particularly those with older children and who had therefore been through the process of surgery (where relevant) or had experienced increased medicalization, as invaluable for making considered decisions about their child’s care, including around surgery and other interventions.
  2. A desire to meet other families who were in a similar situation. Parent/carers described the importance of the empathy offered in this way, allowing the development of friendships and connections with other families. These connections were perceived as promote a sense of belonging and ‘normality’, and were therefore valued.
  3. Provision of opportunities for their children to meet others with limb difference. This was seen as an essential part of their identity formation and contributed positively to the development of self-esteem. This was perhaps seen by parents as the most important contribution of any program, as it offered psychosocial benefits through reducing body image-related anxiety. Identification and a sense of sameness was a significant part of this, as was feeling part of a broader community. These positive benefits were seen to extend to siblings, many of whom experienced indirect effects of the limb difference (such as disrupted daily schedules in order to attend medical appointments).

Translating CCY into the Limbs 4 Kids program

These findings contributed directly to the design of the Limbs 4 Kids program, which is concerned with a national roll-out of the CCY program. Due to the geographical coverage required in ensuring that people from all parts of Australia could benefit from the program, the Limbs 4 Kids program was translated to be primarily online. The three parent/carer goals identified in the CCY evaluation led to the development of the two main tenets of the Limbs 4 Kids program: information-seeking, which occurs through Thrive magazine, fact sheets and webinars; and social support, through the annual conference, via forums and Facebook, through externally-sponsored mobility clinics, and by connections with inclusive sporting organisations.

Baseline evaluation of Limbs 4 Kids

Limbs 4 Kids was launched in mid-2015, and was preceded by the collection of baseline evaluation data from 42 parents involved in some capacity with Limbs 4 Life.

The parent/carer participants anticipated several roles for Limbs 4 Kids; as with those who took part in the CCY, most wanted to be sufficiently informed to feel capable of making the best decisions for their child’s care. This was especially significant for those who had not received information on supporting their child on limb-difference-related issues from their formal health services. Limbs 4 Kids was therefore seen as directly presenting opportunities for parents/carers to advocate around their care-related activities: psychosocial support, prosthetic technologies, funding, community resources, and so forth. Given participants’ interest in actively supporting – and seeking ways to enhance – their child’s wellbeing, it was unsurprising that they reported high levels of general self-efficacy, suggesting that they felt as though they were in control or able to effect change in situations in their life.

Parents/carers also felt it was important to share advice and knowledge with other parents/carers, particularly in terms of role modelling. Reciprocity was significant in these exchanges, and most participants wanted to provide support as much as they desired receiving support. The idea of a mutually supportive community permeated all participants’ accounts.

Connecting with like others was perceived as having multiple benefits, not only in terms of helping parents to cope through instilling in them a sense of shared experiences (and so they were not alone in their journey), but as simultaneously offering them new strategies for understanding their child’s experience.

During the baseline evaluation, parents/carers felt that engagement in the program would potentially offer them, their child, and any siblings, new ways of engaging with others, particularly around ideas of difference. Engaging with other families of children or young people with limb difference was therefore, as with the CCY, seen as an essential component of the program – both in terms of identity formation and for self-esteem. As one person stated, they engaged in the program “to demonstrate life is good living with limb difference.” Through such networks, the Limbs 4 Kids program is seen to offer important long-term benefits to the child, in terms of supporting their resilience-building and enhancing their wellbeing. Parents anticipated that this would have long-term psychosocial benefits.

Next steps

Between August and October 2016, the end-term evaluation will be conducted. Those who took part in the baseline evaluation will again be contacted to invite their participation. If you were not involved in the initial evaluation but are interested in taking part in the evaluation, please contact Narelle (Narelle.Warren@monash.edu). The overall evaluation findings are expected in October 2016, at which point concrete recommendations regarding the Limbs 4 Kids program, including insights on the long-term program sustainability, will be made. All evaluation reports are also available upon request.

References

Arnstein, P., Vidal, M., Wells-Federman, C., Morgan, B. & Caudill, M. (2002) From chronic pain to peer: Benefits and risks of volunteering. Pain Management Nursing, 3(3): 94-103.

Dennis, C.L. (2003) Peer support within a health care context: A concept analysis. International Journal of Nursing Studies, 40(3): 321-332.

Fawcett, S.B., White, G.W., Balcazar, F.E., Suarez-Balcazar, Y., Mathews, R.M., Paine-Andrews, A., Seekins, T. & Smith, J.F. (1994) A contextual model of empowerment: Case studies involving people with physical disabilities. American Journal of Community Psychology, 22(4): 471-196.

Schwartz, S.E. & Sendor, R.M. (1999). Helping others helps oneself: Response shift effects in peer support. Social Science & Medicine, 48(11): 1563-1575.

Stainback, S., Stainback, W., East, K. & Sapon-Shevin, M. (1994) A commentary on inclusion and the development of a positive self-identity by people with disabilities. Exceptional Children, 60(6): 486-490.