Decision-Making Support For Parents Of Children With Cancer
Research type
Research Study
Full title
What are parents' experiences of being supported by significant others, when faced with making decisions about their child's cancer care? A phenomenological study
IRAS ID
276970
Contact name
Elizabeth Jestico
Contact email
Sponsor organisation
Oxford Brookes University
Duration of Study in the UK
3 years, 9 months, 31 days
Research summary
Parents of children with cancer are faced with making many decisions about their child's cancer care and this has been described in the literature as being very stressful. It is vital that health care professionals have a good understanding of the support mechanisms that may help or hinder families when they are in these situations so that, in partnership, interventions to relieve this burden can be developed.
Existing research has explored the influence of health care professionals on parental decision-making in the context of children’s cancer care and the involvement of children in decision-making. However, there is very limited research exploring the influence and impact of “significant others” supporting parental decision-making (see A6-2 for definition of significant others).
In-depth interviews will be conducted with parents of children with cancer. Parents will be recruited from three NHS sites which are Principal Treatment Centres for Children’s Cancer services within England and will be invited to attend an interview with the researcher. The aim will be to recruit a total sample size of up to 25 parents.
Interviews will take approximately 1 - 2 hours and parents will initially be asked to outline the types of decision that they have been faced with since their child’s cancer diagnosis. They will also identify who they consider to be “significant others” by drawing a diagram of their social support system (with the researcher’s help). This will lead to discussion about the parents’ experiences of how these identified people may have supported decision-making processes.All interviews will be recorded (with participants’ consent) and transcribed. Analysis will then be undertaken by the researcher to identify themes. Findings of the research will be disseminated via publication and conferences and will be shared with relevant practitioners with the hope that practice around supporting decision-making will be enhanced.
Lay Summary of Results
The meaning of how ‘significant others’ can support parents to make decisions when their child has cancer
I did this research study for a PhD project at Oxford Brookes University.
I knew from my previous clinical practice as a children’s cancer nurse that parents may be faced with many decisions when their child has cancer and that this can feel very stressful. Previous researchers had explored how health care professionals may support parents with making these decisions, but I was interested to understand how other people in parents’ lives may be supporting them.
I interviewed 6 parents of children with cancer. The types of cancer that the children had varied and they had been diagnosed between 6 weeks and 3 years before the interview. All of them were still receiving care for cancer.
Each interview took place online. I asked the parents to tell me a little about the story of their child being diagnosed with cancer and what types of decisions they had been faced with. We then made diagrams (ecomaps) of the support networks around the family, and this led to conversations about how people from these networks had supported the parents (or not supported them) with making decisions.
The support networks around each family were unique, but often the network consisted of extended family members, friends, colleagues, other parents of children with cancer, and in some cases health care professionals. The levels of support from people in the network varied, and sometimes relationships were a source of stress rather than support. Some parents explained that they often found themselves giving support to people in their network as well as receiving it.
The decisions that parents talked about included decisions relating to cancer treatment, decisions relating to associated medical care (such as how to support their child’s nutrition), but also many decisions relating to managing life outside of the hospital like childcare and school / nursery attendance. Often parents felt that they were limited in their involvement in decisions relating to cancer treatment, and they felt that these decisions were for the medical team to make rather than them as parents. However this did change over time for some families.
Support from social networks (‘significant others’) with making decisions was important, although this support was not necessarily explicitly given in relation to decision-making. Several of the parents who I spoke to experienced a profound loss of confidence in themselves at the time of their child’s diagnosis. They talked about feeling overwhelmed and lost at sea with the decisions that they were facing. People in their social networks could play a very important role in shaping that confidence. Whilst there may have been times where it was helpful for a friend or family member to step in and give the parents advice about a particular decision, often this was not helpful as this could further undermine the parent’s confidence. What felt more supportive was when other people could show compassion by being present and listening to the parents. This could help to empower parents that they were able to make the decisions that were best for their child.
It is important for health care professionals to understand how parents may be feeling about making decisions, and how people outside of the health care setting may be able to offer support to parents. It is also really important that the findings of this research are shared with the general public so that members of social networks supporting parents living through situations like this know how to help. It may be assumed that if somebody is faced with a difficult decision, the best thing that we can do as friends or family members is to jump in and offer advice. However, it is important to be open to the possibility that this may not be helpful, and that instead, offering compassion and empowering parents that they can make the best decisions, can be enormously powerful.
Whilst this study has formally ended, I now plan to share these findings by creating a short film, and holding public engagement events.
I would like to thank the study participants who gave their time to this project, and so generously shared their stories.
Further information about the study can be found on the study website here: https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fsites.google.com%252Fbrookes.ac.uk%252Fliz-jestico-phd-study%252Fhome%2FNBTI%2FFgm4AQ%2FAQ%2Fcb942bda-1701-4411-8086-3a0f75e9442c%2F1%2Fe34DH-08t8&data=05%7C02%7Cstanmore.rec%40hra.nhs.uk%7Ca6ffa31cdde744debf3f08dcd57eb7dd%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638619987426470642%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&sdata=QOntXzh9kQEclGTB7FoqozmyiLbCtJ98eSfo4MtFiUM%3D&reserved=0
Has the registry been updated to include summary results?: No
If yes - please enter the URL to summary results:
If no – why not?: This study is not on a registry.
Did you follow your dissemination plan submitted in the IRAS application form (Q A51)?: Pending
If yes, describe or provide URLs to disseminated materials:
If pending, date when dissemination is expected: 31/12/2025
If no, explain why you didn't follow it:
Have participants been informed of the results of the study?: Yes
If yes, describe and/or provide URLs to materials shared and how they were shared: I contacted the participants by email (following their permission to do this) to thank them for their participation. I included a document with the word document containing the summary above, and a link to the study website: https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fsites.google.com%252Fbrookes.ac.uk%252Fliz-jestico-phd-study%252Fhome%2FNBTI%2FFgm4AQ%2FAQ%2Fcb942bda-1701-4411-8086-3a0f75e9442c%2F1%2Fe34DH-08t8&data=05%7C02%7Cstanmore.rec%40hra.nhs.uk%7Ca6ffa31cdde744debf3f08dcd57eb7dd%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638619987426479891%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&sdata=X9XtUY3hJW%2BnSDJIQkOsfjrSkG27SvdN4UcwPZMHpAA%3D&reserved=0
If pending, date when feedback is expected:
If no, explain why they haven't:
Have you enabled sharing of study data with others?: No
If yes, describe or provide URLs to how it has been shared:
If no, explain why sharing hasn't been enabled: This was a discrete PhD study and so sharing the data with others was not appropriate.
Have you enabled sharing of tissue samples and associated data with others?: No
If yes, describe or provide a URL:
If no, explain why: Not ApplicableREC name
London - Stanmore Research Ethics Committee
REC reference
21/LO/0121
Date of REC Opinion
8 Apr 2021
REC opinion
Further Information Favourable Opinion