Commercial-in-Confidence
Department of Families, Housing, Community, Services and Indigenous Affairs
Evaluation of the MyTime Peer Support Groups for Parents and Carers of Children with a Disability or Chronic Medical Condition
15February 2013
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Table of Contents
Executive Summary
Background and research methodology
Conclusions
Recommendations
1.Introduction
1.1Background
1.2Evaluation objectives
1.3Methodology
1.4Presentation of findings
1.5Profile of participants/respondents
1.6Quality assurance
2.Literature review
2.1Introduction
2.2Health and psychosocial functioning of parents and carers
2.3Parent-to-parent mentorship
2.4Peer support groups
2.5Conclusions
3.Administrative data review
3.1Introduction
3.2Number of MyTime support groups operating
3.3Number of registered MyTime participants
3.4Average participation levels
3.5Costs
4.Overall impressions of program
4.1Chapter summary
4.2Overall impressions and experiences
4.3 Program awareness and drivers for involvement
4.4 Understanding
4.5Expectations
4.6 Achievements
4.7 Challenges
5.Program implementation
5.1 Chapter summary
5.2Effectiveness of program implementation
6.Enablers and barriers to participation
6.1 Chapter summary
6.2 Enablers to participation
6.3 Barriers to participation
6.4 Managing non-attendance
7.Participant outcomes
7.1 Chapter summary
7.2 Benefits of participation to parents and carers
8.Strengthening the program model
8.1 Chapter summary
8.2 Suggestions for improvement
9.Conclusions and Recommendations
9.1 Conclusions
9.2 Recommendations
10.References
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Executive Summary
Background and research methodology
Background
The Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) funds the Parenting Research Centre (PRC) to deliver the MyTime Peer Support Groups for Parents and Carers of Children with Disability or Chronic Medical Condition Program (MyTime).
MyTime commenced in April 2007 and provides peer support groups for parents and carers of children with disability or chronic medical condition up to and including 16 years of age. In 2011–12, over 3,031 parents and carers attended a MyTime group.
The PRC coordinates the program nationally and sub-contracts 15 Coalition Lead Agencies (CLAs) that variously have expertise in the areas of disability, family support, parenting and children with additional needs. CLAs are responsible for the localised implementation and management of groups within their coalition. Each group is supported by two workers – a Facilitator for parents and a Play Helper for children
In May 2012, ORIMA Research was commissioned to evaluate the effectiveness of the MyTime Peer Support Program service delivery model.The following evaluation questions were developed to guide the evaluation:
- How effective has the MyTime program been in delivering its intended outcomes?
- How can MyTime be modified to better achieve its expected outcomes?
- Do differences in implementation of MyTime affect outcomes?
- Are there differences in service delivery in metropolitan, rural and remote regions?
- Are there any unintended consequences of the MyTime program (positive or negative)?
- What are the barriers to the success of the MyTime program?
- What benefits has MyTime had on parents and carers who attend MyTime peer support groups?
- How beneficial are peer support groups?
Methodology
Fieldwork for the evaluation of the MyTime Peer Support program comprised the following qualitative and quantitative research activities:
Qualitative research activities
- 12 in-depth interviews with 12 program stakeholders, which comprised 10 interviews with Coalition Coordinators, and separate interviews with the PRC National Coordinator and relevant FaHCSIA staff, including the Program Manager.
- 4 mini groups with parents and carers who are registered members of a MyTime group;
- 3 in-depth interviews with Indigenous parents and carers;
- 3 in-depth interviews with parents and carers from a Culturally and Linguistically Diverse (CALD)background; and
- 5 post-survey follow-up telephone interviews with Facilitators and Play Helpers.
Quantitative research activities
- An online survey of 139 Facilitators and Play Helpers; and
- An online survey of 410 parents and carers who are registered members of a MyTime group.
Key findings
Overall impressions of MyTime Peer Support program
Overall, the impressions and experiences of the program from parents/carers, Coalition Coordinators, Facilitators and Play Helpers were very positive.The findings from both the qualitative and quantitative research from all three groups indicated that the MyTime Peer Support Program is delivering key benefits to parents and carers of children with disabilities.These benefits include providing parents/carers with a peer support network and giving them more information about how to care for their children.Consistent with its objectives, the program is also being successfully implemented in regional areas and for all sectors of the community.
For parents and carers, a key success factor for the peer support groups was the quality of the Facilitator and the Play Helpers. When the Facilitator was seen by parents as being empathic and skilled in facilitating discussions, parents reported productive group discussions and positive outcomes.In contrast, when Facilitators were seen to be too controlling, or were unable to manage the groups effectively, parents found the groups to be unproductive.Also, if Play Helpers did not effectively manage the children, this disrupted parent group sessions.Coalition Coordinators identified that lack of funding could pose a challenge to the success of the groups (as well as recruiting and keeping Facilitators), and Facilitators themselves reported that recruiting parents to participate was a key challenge.
Program implementation
Implementation of the MyTime Peer Support Program was generally considered to be successful by each of the stakeholder groups, although some groups were more positive than others.Perceptions of program implementation amongst stakeholders from FaHCSIA and the PRC were overwhelmingly positive, with both groups agreeing that the program was running smoothly and meeting its objectives.Parents and carers were also highly satisfied (90%) with how the groups had been run, and many cited the Facilitators and Play Helpers as key factors in the effectiveness of the program’s implementation.The majority of Facilitators and Play Helpers themselves (64% and 76%, respectively) also agreed that the program had been either highly or extremely effective.
In contrast, there were mixed perceptions among Coalition Coordinators about the effectiveness of the program’s implementation.A possible explanation for the variety of views held by Coalition Coordinators was the differences in processes used to manage the operation of peer support groups. For example, Coalition Coordinators that recruited staff through one large subcontracted agency were more effective at recruiting staff than those that recruited staff directly.In metropolitan and regional areas, Coalition Coordinators were positive about the location and accessibility of groups, but those in remote areas found this more of an issue for their groups.There was also substantial variety in how parents and carers were referred or introduced to the support groups.
There were two issues that most Coalition Coordinators agreed upon: that the reporting requirements, while seen as effective, could be made more efficient; and that the funding for the program was insufficient.In relation to funding, coordinators reported that the funding model did not fully cover delivery costs due to some groups meeting for more hours than they were funded for and, more generally, higher-than-funded costs associated with the establishment and administration of groups.
Enablers and barriers to participation
There was a high degree of consistency across different stakeholder groups regarding which factors were perceived to be enabling program participation by parents and carers, and which factors were seen as barriers to participation.All stakeholder groups agreed that the opportunity to gain a peer support network was an important participation motivator for parents and carers.Also, the provision of Play Helpers during these sessions was considered to be an important factor in ensuring the group sessions were productive, and in giving respite to parents and carers.The popularity of this service among parents and carers illustrates that the design of the program is sound, and is effective at meeting the needs of parents and carers in the support groups.
In order to achieve the program objectives of making the service accessible to all sectors of the community, it is important to overcome the access barriers identified in the research. There were three types of access barriers identified by stakeholder groups: physical access barriers (with some low-income or regional parents and carers not having their own transport to the groups); cultural barriers for CALD parents (due to the high cost of providing translators and translating written materials); and parents not being able to attend groups due to work or medical commitments. In overcoming these barriers, the key success factor that was identified was flexibility (of offering transport, translated materials, or session times) which will ensure that parents and carers across the community can receive the benefits of this program.
Participant outcomes
In both the qualitative and quantitative research with parents and carers, Coalition Coordinators, and Facilitators and Play Helpers, there was a general consensus that the MyTime Peer Support Program was delivering its intended benefits for participants.Across all groups, the main program benefit was consistently identified as giving parents and carers the opportunity to meet and share experiences with other parents and carers, and this was also seen to facilitate the other program objectives.For example, parents and carers increased their knowledge of caring for a child with a disability or chronic medical condition through suggestions and recommendations from other group participants (as well as from guest speakers).Often, parents and carers informed each other about government and community services available, and met outside scheduled sessions, increasing their linkages with the community.All stakeholder groups reported that parents and carers also felt more supported in their caring role, by the government, and by each other.
A key strength of a group support model is that once the group is established, the group can become self-sustaining, and the benefits of the group to members can exceed those originally intended.For example, group members can become involved in marketing the group via word of mouth to other parents and carers, and indeed all parents and carers who responded to the survey said either that they would recommend the group to others, or that they already had recommended it.Also, Play Helpers reported an important potentially unintended program benefit for the children of the parents and carers who did not have a disability or chronic medical condition. For these children (often siblings), the opportunity to socialise and play with children similar to their sibling reportedly brought increased understanding of their sibling’s condition, and potentially greater acceptance of them.
Strengthening the program model
The main suggestions for improvement concerned the implementation of management of the program, rather than the program’s design or purpose; reflecting the high satisfaction levels of stakeholder groups with the MyTime Peer Support Program. The main suggestion from Coalition Coordinators was a review of the funding model, to address the time they spent on out of session activities such as preparation or following up group members. Coalition Coordinators and FaHCSIA staff also agreed that the processes for establishing newgroups and targeting resources could be improved.The focus of parents and carers (as well as Facilitators and Play Helpers) was on improving the organisation and frequency of groups, as well as providing more resources (staff and materials) for the group sessions.
Conclusions
The results from the qualitative and quantitative research conducted with all stakeholder groups indicated that the MyTime Peer Support Program has generally been successful in meeting its objectives.A detailed discussion of how the program performed against the key evaluation questions is contained in the Conclusions chapter.Overall, parents and carers were very satisfied with the peer support networks they had gained through the program, reported feeling more supported in their caring role, and more informed about caring for their children.The program aimed to make this service accessible to all sectors of the community, and although good progress has been made in this area, there is scope to improve on this initial success.
Recommendations
Findings from this evaluation point to several areas in which the MyTime Peer Support Program could be improved.Recommendations are listed below:
Promotion and marketing
- Provide Coalition Coordinators and Facilitators with guidance and resources to more effectively promote and market the program to potential participants and referral sources.
- Rationale: Awareness of the program among eligible parents and carers and potential referrals sources (such as health professionals) was often reported to be low by both Coalition Coordinators and parents and carers. Several parents and carers commented that they would have benefited from joining the group at an earlier stage had they been aware that the group was available. Coalition Coordinators perceived that existing resources had a generic focus and they believed that tailored promotional materials would promote and attract participants to the program more effectively. Coalition Coordinators would benefit from guidance from the PRC around ways they can market the program to potential participants and referral sources.
Funding issues
- Revise the funding model to better account for higher costs associated with implementing and sustaining groups in regional/remote locations compared to metropolitan locations. Options for a revised funding model include introducing a two- or three-tiered approach (with higher payments allocated to groups in regional and remote locations compared to metropolitan locations). Funding levels reflecting the actual costs associated with service development and delivery would need to be developed. Alternatively, a flexible funding model could be developed. Under this model, the PRC would specify the outputs for service delivery and ask CLAs to respond with their own pricing structures. CLAs could be asked to demonstrate how they would propose to deliver groups within a set budget, or they could be asked to quote on the cost to deliver a certain number of groups, or groups in a certain location. This approach would provide a means of assessing CLAs’ value-for-money, and could lead to cost-efficiencies associated with service delivery innovation.
- Rationale: Coalition Coordinators reported that costs were higher when establishing and delivering groups in regional and remote locations due to challenges such as remote management of staff, travel times associated with selecting venues and Facilitator travel times to and from groups.
- Revise the funding model to better account for higher costs associated with implementing and sustaining groups with CALD and Indigenous audiences. Options for a revised funding model could involve introducing a two- or three-tiered approach (with higher payments allocated to groups targeting CALD and Indigenous participants than other groups) or a flexible funding model could be developed, as outlined above.
- Rationale: Coalition Coordinators advised that costs associated with running groups with CALD parents and carers are higher due to the need for interpreters (and need for interpreted materials) while groups for Indigenous parents and carers took longer to establish (due to cultural protocols and generally remote location).
Recruitment and retention strategies
- Conduct future research to explore whether specific employment-related factors in CLAs contribute to challenges in the recruitment of Facilitators and Play Helpers.
- Rationale: Coalition Coordinators identified recruitment and retention of Facilitators and Play Helpers as a key program delivery challenge.
- Foster retention of Facilitators and Play Helpers by ensuring they have regular access to PRC news, information about PRC professional development resources and access to ongoing professional development opportunities to maintain their level of skills and motivation.
- Rationale:Awareness and usage of the range of PRC professional development resources appeared to be limited. Access to professional development opportunities varied according to the CLA under which Facilitators and Play Helpers were employed.
- Promote increased attendance and retention of program participants through the formal sharing of better-practice case studies between CLAs and Facilitators and Play Helpers.
Rationale: Maintaining solid attendance levels at groups among program participants was one of the key program delivery challenges identified by Coalition Coordinators and Facilitators. There was evidence that Coalition Coordinators, Facilitators and Play Helpers valued informal opportunities to share information and learnings about their groups, including factors which have sustained participation in groups.
Consistency issues
- Develop minimum content/curriculum standards to minimise a narrow range of activities in the implementation of groups, and to ensure that groups provide a broad range of learning opportunities for program participants.
- Rationale: There was significant variation in the implementation of MyTime groups. Whilst most groups appeared to have achieved a balance in meeting parents’ and carers’ needs for information with their needs for respite, other groups were more firmly rooted either in the information/educational model or the ‘pampering’/playgroup/respite model.
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