Understanding the lived experiences of adult sibling caregivers of children with chronic, life-limiting conditions or life threatening illnesses: mental and physical health and social support

Summary

Caregiving for a child with a chronic, life-threatening or life-limiting condition is a complex family endeavor that extends far beyond the parental role. While the intensive demands placed on parents are well-documented (Hartley et al., 2020), adult siblings often emerge as secondary or even primary caregivers, particularly as family structures shift or parents age (Yang et al., 2017).

Despite their involvement, these siblings frequently struggle to be recognised by healthcare systems, leaving their specific needs unmet (Dang et al., 2020).

There are a number of significant gaps in current literature: the majority of existing research focuses on siblings of individuals with intellectual (Arnold et al., 2012; Brennan et al., 2023; Davys et al., 2016) or learning disabilities or siblings of those with mental health conditions (Dang et al., 2022; Yang et al., 2017).

This research shows that those adult sibling caregivers experience a number of ongoing difficulties including increased poverty (Hayden et a., 2023), back ache and mental health problems (Brennan et al., 2023).

We currently lack data on the prevalence of adult siblings caring for a minor with a physical, life-limiting illness (with one notable exception: Grant et al., 2021), and we know even less about their unique lived experiences.

Because they often operate in the shadows of parental care, their contributions and personal struggles remain unquantified and misunderstood.

This exploratory study addresses this oversight by investigating the realities of this demographic. First, this project involves determining the prevalence of sibling caregiving, globally and in Northern Ireland specifically. Second, this project will determine their lived experiences and identify their specific support needs.

This research aims to bring visibility to a population that is essential to the care continuum yet remains professionally ignored.

Objectives of the research:

1. To determine the prevalence of older sibling caregiving for children with physical health conditions globally and in Northern Ireland
2. To explore the lived experiences of adult sibling caregivers of children with chronic, life-limiting conditions or life threatening illnesses
3. To understand the physical and mental health of adult sibling caregivers of children with chronic, life-limiting conditions or life threatening illnesses
4. To understand the social support needs of adult sibling caregivers of children with chronic, life-limiting conditions or life threatening illnesses

Methods to be used:

Participants will be recruited through existing relationships with a number of charity organisations in the UK and Ireland (potentially including Cancer Fund for Children, Together for Short Lives, Barretstown, Chest Heart and Stroke, TinyLives) and our partners in Australia (who have existing links with Siblings Australia, Rare Care, Very Special Kids Australia, Palliative Care Australia and others).

This project will take a mixed methods approach involving triangulation of data. A systematic review of the prevalence of sibling caregivers will be conducted [Objective 1].

For the empirical research project, a group of adult siblings who have previously, or are currently providing care to a sibling (under the age of 24 years) with a physical health condition will be recruited.

Participants will be asked to complete a questionnaire designed to explore their patterns of caregiving [Objective 2], mental and physical health [Objective 3] and social support [Objective 4]. Participants will also be invited for a follow-up interview to capture the in-depth lived experience and support gaps that the survey may miss [Objectives 2-4].

Skills required of applicant:

• A strong undergraduate degree in Psychology or a closely related discipline.
• Demonstrated understanding of both quantitative data analysis (e.g., SPSS) and qualitative thematic analysis (e.g., NVivo or manual coding) through either conducting a previous research project or completing relevant coursework or both.
• Ability to work flexible hours as required to facilitate data collection and interviews with participants in diverse global time zones.

Essential criteria

Applicants should hold, or expect to obtain, a First or Upper Second Class Honours Degree in a subject relevant to the proposed area of study.

We may also consider applications from those who hold equivalent qualifications, for example, a Lower Second Class Honours Degree plus a Master’s Degree with Distinction.

In exceptional circumstances, the University may consider a portfolio of evidence from applicants who have appropriate professional experience which is equivalent to the learning outcomes of an Honours degree in lieu of academic qualifications.

Equal Opportunities

The University is an equal opportunities employer and welcomes applicants from all sections of the community, particularly from those with disabilities.

Appointment will be made on merit.

Funding and eligibility

This opportunity is open to all applicants.

The tuition fee for international and EU (excluding ROI) candidates is £19,040 for 2026/27.

Studentship funding is available to UK and ROI applicants, as follows:

• MRes studentships will be available to top ranked candidates to cover tuition fees and a Research Training Support Grant of £900.
• All applicants to the project will be considered automatically for an MRes studentship.
• Applicants who do not receive a studentship but meet admission requirements may be offered admission on a self-funded basis.
• Applicants who already hold an MRes or a doctoral degree or who have been registered on a programme of research leading to the award of an MRes or doctoral degree are NOT eligible to apply for funding.
• Applicants who hold or who are registered on a taught Master’s degree are eligible to apply.