An evaluation of the impact of a cancer support specialist service on families of children with cancer and the multidisciplinary team in a children’s health service in Ireland

Recruitment

A purposive sampling strategy was used to recruit participants in this study. Inclusion criteria were families who had or were currently using the new CSSS. MDT members, CSS role holders, and members of the study’s steering group were also included. Exclusion criteria were families who had not used the service and MDT members who had not worked with the service.

Relational Support

Parents reported overwhelmingly on the positive impact of relational support offered by CSSs at times of immense emotional distress. Words such as ‘fantastic’, ‘amazing’, ‘willing,’ ‘caring,’ and ‘the rock’ permeated the interviews. Parents valued the idea of having a CSS that was solely there to support them in their childhood cancer journey and was described by a parent as ‘just being there’. (Amir-parent)

‘… I don’t know how I can put it into words, to be honest, it's very hard but

[the CSS] make[s] a difficult journey much easier’. (Caroline-parent)

The ‘ready availability’ of a CSS was mentioned by parents as a key benefit. Parents valued that CSSs were proactive in offering help:

‘it's just nice to have someone just to check in too’. (Kate-parent)

As the sole focus of the CSSs was to support families, parents felt assured that role holders did not need to rush off to deal with other issues, and could stay with them when needed:

‘I think it just brought a bit of lightness to the day, you know, knowing that there's someone that you can just kind of sit and have a chat [with]and they don’t have to run off to somebody else… So, I think it’s just that kind of personal touch, which is really important, you know.…As in we could go off and have a coffee and kind of a more relaxed chat I suppose, [the CSS] really [was not] being pulled in all directions’. (Ellen-parent)

Some parents appreciated being able to chat with CSSs in a ‘normal’ way, and not have to feel they were in a formal therapy context:

‘…not necessarily counselling, but just to have a chat with somebody who kind of gets it...’. (Daniela-parent)

Some parents spoke of an additional benefit of the CSS’s support over support from family or friends as there was no expectation of reciprocity. Similarly, parents also felt they did not have to worry about protecting the CSS from emotional pain and trauma that they were going through:

‘[The CSS is] someone to talk to when you mightn’t want to, you get sick of ringing your family, I think your family is sick listening to you, you know (laughs), you don’t wanna be the bringer of bad news all the time and it's nice to have someone that can just listen, you know’. (Caroline-parent)

An MDT member also spoke of the benefit of the CSS’s support over support from the MDT.

‘You know sometimes they will tell the cancer support specialist things that they won’t necessarily tell us’. (Isla-MDTM)

Members of the MDT also spoke of the positive impact and additional support offered to parents by the CSS particularly at times when other services may not be available.

*MDTM (Multidisciplinary Team Member)

Mediation support-bridging the gap

Parents mentioned that due to the informal nature of the CSS role, CSSs often facilitated communication between families with various charities or supports in the community, and with MDT members, especially at critical times in a child’s cancer journey. This was viewed as important in enabling conversations about things that might otherwise be left unexplored:

‘[The CSS] really facilitated the conversation being productive, both from a family and medical perspective, because [the CSS] knew the family… knew where they were coming from, [the CSS] knew what their priorities were and as a doctor I knew what my medial priorities were, but [the CSS] helped those two things to merge in a really, really positive way in a very difficult situation’. (Daryna-MDTM)

Members of the MDT noted that the CSS’s feedback to the MDT about how things were going for the family was an important component of enhancing continuity of care and communication from the MDT:

‘[The CSS] is really good at feeding back to us... Sometimes when you don’t hear from people you think that they’re getting on great. And that can be a bit of a red flag that people aren’t coping that well… they’re sort of families that I would refer to the community support, or the cancer support worker. And then [the CSS] would bring back… actually it’s not going great for them… maybe they could check in with you… [to say] it might be worth giving them a phone call...’. (Karra-MDTM)

Navigational support

Parents commented on the amount of information that they had to become acquainted with following their child’s cancer diagnosis, including available supports. The CSS supported families by voluntarily sharing information on a variety of issues ranging from who is who within the MDT, to available services available such as [names a purpose-built therapeutic centre for families affected by childhood cancer] charities, and navigating procedures involved in applying for grants, contacting charities, and services:

‘And trying to organise then… even with the volunteers from [names a residential camps for children with a serious illness] to come in… just to do things with [child with cancer’s name]. [The CSS] was kind of coordinating all that in the background if [they] thought somebody needed something, if someone needed an extra little bit… the other services, information, a little bit. [Names an Irish childhood cancer charity] they would have been emailing us and once they had our email address and all the rest of it and offering their services. But I think the fact that the CSS was the face of it, you know it was easier than dealing with emails or phone calls’. (Beatriz-parent)

The CSS’s willingness to proactively find relevant information for families they could not find elsewhere relieved parents of the burden of worrying about where they would access information and enabled them to concentrate on caring for their sick child. One parent spoke of the difficulty her daughter had when her eye lashes fell out because of treatment and how the CSS navigated her to YouTube clips to help and support her:

‘… her eyebrows and her eye lashes were starting to fall out and that was freaking her out more than her hair. So, I was like, Jeez I don’t even know how to go, because I went into a salon... They were terrified thinking, oh no she got chemo that really we can’t do anything with her... I emailed… [the CSS] going is there any chance you’d have [a] clue of anything that you know to help her. And [the CSS] found… direct YouTube videos and different things... and sent them which was really helpful’. (Olive-parent)

Respite support for parents

CSSs provided respite support to parents which enabled them to take time for themselves to engage in self-care activities. Respite support came in many forms, tailored to individuals needs and varied from family to family. For example, within the hospital system, the CSS was described as someone who would make time to take parents for a coffee or create space for parents to go for a walk, or if needed do a small shopping errand:

‘… even in terms of lifts… I’d be reluctant to look, ask for help… when we’ve loads of friends and everything around… When I know there’s [CSSs] people who can [help]… I think it’s really important. I think it’s important that they’re there for people who definitely use them…..’. (Olive-parent)

In the community, CSSs supported and engaged the child with cancer or siblings within the home. Parents spoke of how this helped to refocus attention on siblings who may not have received enough attention over the course of their other child’s treatment. It also relieved pressure parents felt to be playing and interacting with their child/children when they were exhausted:

‘[The CSS] might come out and you know maybe go for a walk with the girls. Or have a chat with them... I think it’ll be really good for the other two. Because you feel like you’ve ignored your other children for the last [few] months’. (Olive-parent)

Respite support also came in the form of organising activities for the children or organising time away such as in [name of respite centre]. The fact that the CSS took the time to organise these activities also provided respite for parents, as it relieved them of the tasks associated with organising:

‘… in terms of resources… I mean I mentioned [names a residential service]and things like that and, you know, there's things that come [the CSSs’] way, like there was a zoo trip that we were able to do, it's just kind of nice things close by. I've no capacity to be arranging things (laughs), at the moment’. (Caroline-parent)

Sibling support

Parents mentioned the importance of CSSs connecting with all family members, and valued warm support offered to siblings to ameliorate the challenges they encounter. Parents spoke of how the CSS made space for children to play and process their own emotions through various developmentally appropriate activities that the CSS engages in:

‘[The CSS] comes every few weeks and oh my gosh, my children absolutely adore [them]. They love [the CSS], they talk openly with [the CSS] as if [the CSS has] been here all our lives… my little boy like I said isn’t even two so obviously he wouldn't be I suppose as involved in the stuff but he, oh my gosh the minute [the CSS] comes in he runs to [them] and he is with them all the time’. (Kate-parent)

CSS offered opportunities for distraction for their child as well as taking a future orientation which was welcomed by parents:

‘[The CSS] would be chatting about things that he wants to do after treatment and [the CSS] [would] be very encouraging to him, like he wants to write a book and he’d be telling [the CSS] and [the CSS] [would] be giving him tips...’. (Ellen-parent)

Filling the gap of unmet needs for families

MDT members noted the importance of CSSs as an auxiliary source of support which could in part meet the needs of parents. In what was described as an ‘under-resourced’ environment, the presence of the CSS role was seen as a welcome addition. The perception of MDTs was that the CSS role operated differently from other MDT team members as it was outside of the MDT’s traditional medical orientation:

‘The role operates outside of kind of the traditional MDT, so we all have our really specific roles whereas the cancer support specialist is able to kind of provide support I don’t know I think for the families in a way that is less medicalised, less clinically orientated’. (Olivia-MDTM)

The needs of families were emphasised by members of the MDT. Having the CSS on the ward was a relief, because it added another source of support to call on, enabling the further prioritisation of families’ multiple needs:

‘I suppose we all had kind of almost like huge relief in us that there is somebody then that we can call when we don’t have anybody else to call….’. (Mary-MDTM)

Flexibility in the provision of the service for families

The flexibility and availability of CSSs at weekends was a noted benefit as many services were provided only between Monday and Friday. Weekends are also a time when there are less members of the MDT working. CSSs not being limited to a Monday to Friday, or to nine-to-five hours, ensured that support was provided if families experienced challenges or if a child was in the ICU in the evenings or over the weekend, filling this gap within services:

‘… we see lots of challenges at weekends. And [the CSS] having that flexibility… not being stuck to a nine to four rota … is a brilliant addition I think’. (Daryna-MDTM)

Evenings and weekends were identified as opportune times to provide additional support to families as they provide a greater opportunity to spend time with, and support, the wider family members such as siblings and other family member visitors. As there is less clinical-based activity focused on the child during these times, it also allows for a quieter, less busy, environment for families to reflect on and address some of their concerns:

‘Whereas at least then if [the CSS] is around and has the capacity to be late and with more flexible hours, [the CSS] is catching parents at different times. If they’re juggling, like mum is here during the day, dad comes in in the evening. But he might know more about this, or he might have a worry. It’s easier to catch them when there’s a bit more leeway in [the CSS’] hours’. (Indie-MDTM)

Immediacy of access for families

The availability of the CSSs and their ability to provide support at the right time to familieswas welcomed by MDT members and viewed as beneficial to the care of families. This availability was partly enabled by the CSS having no waiting list:

‘You can just kind of nab [the CSS] in the corridor and that has been the case exactly with me… I’ve referred at least three families, well not referred but have kind of brought to her attention that especially new families. They need a huge, huge amount of supports and then [the CSS] hasn’t had any waiting lists like a lot of other services’. (Olivia-MDTM)

Freeing up time for clinical component of MDT work

Combining clinical work with family support was spoken of as a challenge for the MDT, with clinical work often taking precedence over providing psychosocial support to families. A combination of a lack of time or specific training was noted as factors in the ability of the MDT to respond to families adequately:

‘Because I have to go do four hundred and one other things… as much as you want to give them the time. But we’re also not hugely, we wouldn’t necessarily have a huge amount of training in how to support somebody either…Yea all of that as much as we’d love to be able to do it, there’s often the time limitations’. (Diane-MDTM)

Members of the MDT noted how parents felt a sense of relief when the CSSS was on the ward and reported that the feedback they received from families on the impact of the CSS was overwhelmingly positive:

‘… the feedback from families which is the most important indicator of how we are doing

actually has been overwhelming positive…’. (Isla-MDTM)

The CSS’s provision of support to families thus enabled MDT members to concentrate on the clinical component of their work, while being assured that the needs of families were being met: