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Dear Maryanne Thomson and colleagues at Child Cancer Foundation,

Thank you so much for your willingness to help with recruitment for the Massey University research project, Fathers of children with cancer: A narrative inquiry. The research project is now in its final stages, and I would like to share the findings and outcomes of the study with you. Without your help, this study would not have been possible, and I want to thank you again for your honesty and generosity in assisting me by advertising my study in your newsletter.

In total, twelve fathers from across Auckland participated in the study. The results were analysed using a particular method called narrative analysis, which focuses on the stories people tell about their experiences and the ways in which these are told. Roles were chosen as a way to capture how fathers constructed themselves performing different roles of fatherhood and as they responded to the challenges of

their child’s cancer diagnosis and treatment. Roles were seen to be fluid, interrelating, and could be transitional or ongoing. Some of these roles seemed thrust upon fathers, while other roles were chosen by them. Each role presented its own challenges of adjustment and identity. Some roles were not dissimilar from roles that might be identified in the accounts of fathers of healthy children, such as the role of Husband, or Breadwinner; however, the demands and challenges of these roles were heightened by cancer. Other roles were more time-limited and specific to the cancer experience, such as the Practical Policeman.

Analysis was focused around the central role of Cancer Dad, as following the initial diagnosis, fathers realised they had become a Cancer Dad and had to negotiate a period of shock and devastation as they grappled with the serious nature of their

child’s diagnosis and the uncertainty of their child’s future. There were four main ideas which came out of an exploration of what it means to be a Cancer Dad: taking control, finding strength, juggling responsibilities, and managing relationships. Within each of these four ideas, there were subsidiary roles that fathers experienced. See Figure 1 (next page) for a visual representation of the structure of the analysis, followed by a more in-depth explanation of each of the main ideas and subsidiary roles.

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Figure 1. Visual display of roles. This diagram represents the structure of the analysis, with Cancer Dad as the central role, surrounded by four key ideas with subsidiary roles.

Firstly, Cancer Dads felt a need to take control of their child’s situation. In the

role of Decision Maker fathers attempted to regain control by making decisions about

their child’s situation. Similarly, when taking on the role of Active Advocate, fathers discovered the importance of being well-researched and assertive so they could stand

up for their child’s best interests. Finally, fathers re-established a sense of control by taking charge of the practical areas of their child’s life and enforcing infection control and adherence to treatment in the role of Practical Policeman.

Secondly, Cancer Dads needed to find strength and the inner resources they needed to support themselves and their families through the trials of treatment. Fathers reported feeling pressured to take on the role of Emotional Rock, masking their own emotions in order to provide stability and support for their family. Fathers emphasised the importance of finding a safe or private way to vent their own emotions, rather than bottling them up and leaving them unresolved. Fathers also reported feeling disconnected and misunderstood, and some decided to move into the Lone Wolf role.

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Although some fathers reported feeling reluctantto ask for or accept help from others, those that did accept help from friends and family found it very useful.

Thirdly, Cancer Dads needed to spend time juggling their responsibilities. Some fathers acting as Breadwinners found it difficult to meet work obligations and provide financially for their families during cancer treatment. Two fathers in particular faced significant challenges from their employers in their role as a Breadwinner and suggested the importance of seeking workplace advocacy. In the role of Caregiver, fathers often felt challenged by the expectation that caregiving was traditionally the mother’s responsibility and at times felt undervalued and misunderstood by hospital professionals. Nevertheless, fathers valued the opportunity to be involved and spend time with their sick child as a part-time or primary Caregiver.

Finally, Cancer Dads felt they needed to manage relationships during the cancer journey.Due to the intensity of treatment, fathers reported that they spent a lot more time with their sick child which led to positive changes in that relationship. However, fathers also reported struggling to maintain boundaries for the sick child, and suggested the importance of being fair among siblings and putting effort into relationships with other children from the early stages, as otherwise they are likely to feel left out. During cancer treatment, stress, sleep deprivation, lack of quality time, and focus on the sick child put considerable strain on many Husbands’ relationships with their wives. However, by supporting their wives through the difficult times, many Husbands found that their relationships were strengthened overall, and they had a greater appreciation for each other. Cancer Dads also reported prioritising their role as

Family Man and spending more time with their children as a result of their cancer

experience.

Feedback Specific to CCF

Overall, fathers were very positive in their feedback specific to the services offered by CCF. In particular, a number of fathers commented that CCF had a good balance of offering services but allowing families to choose what they accessed:

They knew when to connect and when not to connect. Jack

They’re good if you need them. I think if you want the support, they’re there and if you wanna use these facilities they’re great facilities, they’re there. If

you wanna talk to someone, you can talk to someone but if you don’t, you

don’t and that’s fine. We haven’t felt the need to use them a lot. A lot of people do and that’s great, they’re here and that’s the main thing. Caleb

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Fathers who had CCF staff members involved with their child’s treatment also

expressed their appreciation of the services they provided:

We had our own minder come and hence where we got all these special beads –she’s fantastic. Really nice and very helpful. Just come and sit with

us in the early stages. Really good, can’t sing their praises enough, very

helpful. Max

And they were just good, they were explaining everything that was going on all the time, and you certainly go to know them, and they were very friendly. Yeah, definitely, yeah, hard, hard job for them to do, but they seem to enjoy it. Mark

Six fathers brought their child’s Beads of Courage along to their interviews and spent some time explaining the significance of each colour bead and the special milestone beads. Fathers expressed support for the Beads of Courage programme and

saw the beads as a powerful way of visually telling their child’s story:

When we show these to people, it’s very moving for them, cause they can

actually see, it tells a story. James

Furthermore, a number of fathers mentioned the fathers’ outings, family outings,

and coffee groups which CCF runs. These were viewed as positive ways to connect with, support, and learn from other cancer parents:

Going to the CCF coffee groups, and talking to parents who, some of them have been out 9 years, but they still come back and answer questions, and

this is how we did it back in our day, and you guys are different now. It’s

good to learn all those different things. Ryan

In addition to general suggestions for services which may be helpful for fathers, as described in the ideas for change section below, some specific feedback regarding

CCF’s services was given by two fathers:

There’s no follow-up on treating the family unit, you know. And I think that’s a big thing, a big, big thing. They may not have enough money to do that, but there is a lot of need, you know. And someone like CCF do a great job,

but once again, it’s only treating the kid. And they do some sibling stuff

which is quite good … I think there’s a definite need in the actual family unit to be looked at, rather than just the clinical/medical disease covering of the

whole thing. Because it’s such a long period. And families are breaking

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I think CCF also need to be a little bit more realistic in maybe hosting things

in an area. There’s another family that we know of that’s in the area. I don’t know where they are. I don’t know how their father feels, if he’d talk about it.

I think they need to look in areas as well and offer services and get- togethers so father can all sit around and just talk about how things are going. James

Ideas for Change

Fathers also shared a number of ideas for change (that were not specific to CCF) when they were talking about their experiences with the cancer process. Along with the ideas given by fathers above, these might be additional areas for CCF to explore to determine if they fit within their current model of care.

x Health professionals and support workers could be encouraged to actively support

fathers’ involvement in their child’s care. For example:

o Inviting the father to attend the initial assessment and information session and letting him know that his input is welcomed and valuable

o Creating a safe space in which fathers can ask questions and express their concerns may help to alleviate additional stresses and uncertainty.

x Fathers could be provided with additional opportunities for emotional support. These may include:

o Connecting with other fathers of children with cancer, through groups and outings

o Counselling support

o Family outings with other families of children with cancer.

x Workplace advocacy services could be made available to fathers who need assistance to negotiate employment arrangements that will give fathers job security, while also allowing them the flexibility to meet personal and familial obligations.

x Budgeting and financial advice services could also be made available to fathers and families of children with cancer. Families should also be informed of any financial assistance they can access, such as parking permits, petrol vouchers, or benefits, at the beginning of treatment.

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Conclusions

In conclusion, this study has shown that fathers play a number of important roles

following a child’s diagnosis with cancer. It is hoped that the findings of this study will

be able to be applied in appropriate settings in order to ensure fathers have the

opportunity to play a key role within their child’s care. Thank you again for your

contribution to recruitment of participants for this study. Please contact me if you have any further questions about the study or its results.

Kind regards, Sarah Cluley

(email [email protected] or call 02108160199)

School of Psychology –Te Kura Hinengaro Tangata

Private Bag 102904, North Shore Mail Centre, Auckland 0745

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