Table 11 Programme problems and challenges: qualitative participant feedback

The programme was inadequately resourced:

While the costs of the programme sessions were covered by the research team, transport to and from the sessions as well re-imbursement for carer time, was not covered. These out-of-pocket costs created financial stress for the participating organisation

“There wasn’t any additional resources or, um, I don’t know, supports we had available to us for the program. Like it was, time that I had to put aside out of my week and the other carer had to do the same, and we had, you know, to stop other clients using the vehicle so that we could use the vehicle on a Thursday [to get to the program]. So it was a bit of a challenge because we had clients from all different parts of [the disability organization]…like on the days we couldn’t get a vehicle, the taxi to get us all there ended up being, like $120 bucks, just in a taxi to do a turn around there and back” Carer 2

Communication between programme facilitators and formal and informal carers was inadequate

“I did get a copy of handouts [from the program] because I would request it, but in other cases the guys were getting a copy of the handouts but I’m not sure if the support worker or the homes they were living were getting a copy as well. So you don’t know if the guys are taking the paper then they don’t want it anymore and then they trash it… the group homes or the families where they are living need to told, even if its on an email so the group homes or families have access to the same information because some guys are very particular about their things being touched.” Carer 1

Issues with malfunctioning physical activity equipment created stress for some participants

“Towards the end of the program the straps on the exercise bike on the seat broke, and, um, because they weren’t working for a few weeks, it just was a little bit difficult for some of our clients to say, use the exercise bikes without the straps because they’d got used to them.” Carer 2

Healthy eating component of the programme was too theoretical

“For the nutrition [sessions]….I think it would have been more beneficial for the guys to learn in practical ways about food… I think that the talking was good, but I just know from experience that they need practice…. so perhaps teaching them to make a healthy lunch would have been a bit better than to just talk about it… Because I know that they learn by seeing, by doing, by touching” Carer 1

Lifestyle changes may not be sustained once programme is over:

While carers highlighted a number of benefits resulting from programme participation, they expressed concern that changes may be unsustainable without further buy-in from family members and paid support staff

“If they [participants with ID] don’t have a constant support, or a program in place with someone, or a group of people will be taking them every week to continue these [healthy lifestyle] approaches, …it just won’t happen. They won’t independently go and do it. Either they need the assistance to travel somewhere, or they need someone’s guidance to help them use the equipment in the gym, and …they need someone there to give them that push”. Carer 2

So I think that it’s got to be a real commitment, not just from the practitioners perspective but also from the families perspective, because without their support they can't really do it alone. The ones that did [make healthy lifestyle changes] had extra support, whether that was in a group home or it was at home. So, yeah, it’s got to be a group agreement, it’s not just the participant. Because if the participant wants to lose weight, they want to do exercise but they live in a group home unless the carer takes them out they wont be able to do exercise. Its compromising, it’s finding a comprise, within the organisations where they are living. And keeping them accountable as well, do you know what I mean?” Carer 1