Supporting families living in deprivation, when an adult with significant caregiving responsibilities for dependent children has incurable cancer
Families, deprivation, incurable cancer, end of life, children
Around the world, one in twenty children will experience the death of a parent or another important adult before they reach adulthood. For families who don’t have much money or who face other challenges, this can be even harder, as they often have less available support. This project aims to understand how families go through this experience, how professionals can best support them, and what information and resources are available online to help.
This study aims to better understand the needs of families living in deprivation, when an adult with significant caregiving responsibilities for dependent children has incurable cancer. There will be three key studies conducted as part of this project:
Study 1:
When an adult in a family gets a diagnosis of incurable cancer, it can be a scary and confusing time, especially for children living at home. Parents and carers often go online to look for advice on how to talk to their children and help them cope. However, we do not know how reliable or helpful this information is. This study examined information from four online sources: Google, YouTube, TikTok, and AI chatbots (such as ChatGPT). We used 10 different search phrases to find what a worried parent type – for example ‘how do I tell my children I have cancer’. We assessed how trustworthy, useful, and easy to understand each source was. The study was published in PLoS Digital Health in July 2026.
Study 2:
We have interviewed 44 health and social care professionals across 23 countries, including many from lower-income settings (>40%). We asked them about their experiences of supporting families going through this very difficult situation, to better understand how professionals can provide better support to families.
Study 3:
We will conduct interviews with parents or carers and are living in hardship. We will ask about their experiences of living with incurable cancer and how they support their children. This will help us better understand how to support families in these situations.
A bereaved parent, Lisa Strutt, funded as a PPI co-applicant on the project for one day a week and is involved in all aspects of the project from the development of the funding application. This includes refining the protocol for study one, defining search phrases, identifying resources, extracting information, and contributing to manuscript writing for publication. In studies two and three, Lisa supports participant recruitment, data analysis, and manuscript preparation.
In addition, a Patient and Public Involvement Engagement (PPIE) group was established to provide feedback on study findings and help shape recommendations for clinical practice, policy, and education. The PPIE group comprises two parents with lived experience, a cancer family support and art therapy coordinator, a palliative care consultant, a cancer social support specialist, an oncology nurse, and a palliative care psychotherapist.
Study 1:
Google provided the highest-quality information, with most content coming from trusted sources such as health organisations. AI chatbots and TikTok provided lower-quality information that was less reliable and less helpful, while YouTube was somewhere in the middle. Most written online information was still quite difficult to read, even for adults. This means that even when information is accurate, many people may struggle to understand it. There was also very little content that reflected different cultural or background experiences.
Study 2:
From the 44 health and social care professionals across 23 countries that were interview professionals said that being “deprived” — meaning living in poverty or hardship — is about more than just having less money. It involves lots of things tangled together, such as where people live, their religion, education, and family relationships. They also explained that before families can talk about a parent that is dying, basic needs often must be met first, such as having a safe home, enough food, and financial support. It is very difficult to have emotional conversations when families are worried about everyday survival such as ‘keeping the lights on’. Professionals also said they often felt out of their depth and did not always know how best to help. They highlighted that social workers, charities, and community organisations are essential, but families do not always get connected to them quickly enough— they didn’t always know how to help these families, and felt that social workers, charities, and community organisations were vital, but weren’t always easy to connect families with quickly enough.
Study 3:
Interviews with parents or carers is ongoing.
July 2025 – July 2026
Project Leads:
Dr Jeffrey Hanna, Lecturer in Clinical Cancer Nursing, Ulster University, Institute of Nursing and Health Research, Belfast, UK, South Eastern Health and Social Care Trust, Ulster Hospital, Dundonald, UK (Joint PI)
Prof Cherith Semple, Professor in Clinical Cancer Nursing, Ulster University, Institute of Nursing and Health Research, Belfast, UK, South Eastern Health and Social Care Trust, Ulster Hospital, Dundonald, UK (Joint PI)
Research Team:
Dr Sally Paul, Senior Lecturer, University of Strathclyde, School of Social Work and Social Policy, Glasgow, UK
Dr Rohan Anand, Research Associate, Ulster University, Institute of Nursing and Health Research, Belfast, UK
Ms Lisa Strutt, Executive leadership coach, Lisa Strutt Leadership Coaching, UK
This study is funded by the National Institute of Health Research (NIHR), Applicant
Development Award: NIHR168679 (https://www.nihr.ac.uk/). This was awarded to project reseach team members Jeffrey Hanna, Cherith Semple, Sally Paul, Lisa Strutt.
Peer Reviewed Journals Articles:
Anand R, Semple CJ, Paul S, Strutt L, & Hanna JR. Evaluating the quality, reliability and readability of digital and artificial intelligence resources for adults with cancer who have significant caregiving responsibilities for children. PLOS Digital Health.
Conference presentations:
Findings for Study 1 were presented at the 14th Annual Palliative Care Research Network Symposium in Dublin 2025.
Media links that might be useful:
UTV Facebook page (Facebook account may be required): https://www.facebook.com/share/v/1CpJzVSuyV/
The study was featured in a 9-minute interview on BBC Radio Ulster’s Good Morning Ulster Programme, with the research team and PPI Co-applicant Lisa Strutt discussing the findings. Listen back to the interview here https://www.bbc.co.uk/sounds/play/m002ykx1
Hanna JR, McCaughan E, Semple CJ. Challenges and support needs of parents and children when a parent is at end of life: a systematic review. Palliative medicine. 2019 Sep;33(8):1017-44.
McCaughan E, Semple CJ, Hanna JR. ‘Don’t forget the children’: a qualitative study when a parent is at end of life from cancer. Supportive Care in Cancer. 2021 Dec;29(12):7695-702.
Semple CJ, McCaughan E, Beck ER, Hanna JR. ‘Living in parallel worlds’–bereaved parents’ experience of family life when a parent with dependent children is at end of life from cancer: A qualitative study. Palliative medicine. 2021 May;35(5):933-42.
Dr Jeff Hanna: J.Hanna@ulster.ac.uk
https://pure.ulster.ac.uk/en/persons/jeffrey-hanna/
