Understanding the relationship between siblings impacted by psychosis
Research type
Research Study
Full title
Understanding the relationship between siblings, when one person is impacted by psychosis: a grounded theory approach
IRAS ID
336077
Contact name
Lauren Laverick-Brown
Contact email
Sponsor organisation
Canterbury Christ Church University, Salomons Centre for Applied Psychology
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Research Summary
Mental health services use the term ‘psychosis’ to describe people's experiences of perceiving reality differently to those around them. Such experiences can cause distress, and families can become invaluable sources of support and care for a person experiencing psychosis. This includes siblings, whose relationship is often the longest standing in a person's life. As such, one sibling may be a primary source of care and support to the other sibling experiencing psychosis. Importantly, ‘caregiving’ siblings often require support to maintain their own well-being, yet services frequently fail to address their needs.
Studies have started to consider siblings’ experiences of caregiving and factors that influence their move towards a caregiving role, but the area remains under-researched. The purpose of this study is to develop a theoretical framework relevant to the relationship between siblings, and how these changes when one sibling offers care and support to their brother/sister experiencing psychosis. It is hoped the framework could improve service provision for families; in particular, promoting recognition that siblings can take on a supportive role.
Participants will be involved in either a focus group or a 1:1 semi-structured interview. Data generated from a focus group and one-to-one interviews will be analysed using a grounded theory approach. The resultant theory produced will seek to describe the relationship evolution between siblings, when one person experiences psychosis and the other steps into a supportive role. Participants recruited will identify as offering care to their brother or sister with psychosis, who will have accessed support through adult mental health secondary care teams.
This project is being conducted in partial fulfilment of the Doctor of Clinical Psychology degree awarded by Canterbury Christ Church
Summary of Results
Study title: Understanding sibling relationships, when one person experiences psychosis
Why this study was completed:
• Mental health services are traditionally set up to ‘treat’ people diagnosed with mental health difficulties, including people who experience psychosis (PEP)
• However, research shows that psychosis-related experiences both affect, and are affected by, people in the support network of PEP. Most often, these support networks consist of family members.
• Research also shows that including family members in interventions can be very helpful e.g. ‘systemic family therapy’ or ‘family interventions for psychosis’. However, services and research tend to pay more attention to parents or partners, meaning adult siblings can go overlooked, even when they are important in PEP’s lives.
• Sibling relationships are particularly important, as they have the potential to be a person’s longest-lasting, marked by unique bonds and shared experiences. When one sibling develops psychosis, relationships can change dramatically.
• Often studies on siblings of PEP view them as ‘carers’, and focus on stress and burden. Whilst this may capture some aspects of siblings’ experiences, it obscures other important dynamics of the sibling relationship. Plus, lots of siblings don’t see themselves as carers at all.
• This study aimed to develop a theory (i.e. an explanation of how or why something happens) of how adult siblings experience and make sense of their relationships with a brother or sister who has experienced psychosis. The goal was to provide useful insights for mental health professionals who work with families.
What did the study entail?
• This study used a research approach called grounded theory. This was chosen because I wanted to understand each participant’s unique experiences; we all perceive things differently based on our experiences, who we are as people, and what matters to us. It also helps researchers recognise that our own views can influence how we interpret what people tell us.
• Ten participants were recruited, each having a brother or sister who has experienced psychosis. Participants were recruited through NHS services and a sibling support network. Each person took part in an in-depth interview, which involved me asking about their relationship with their sibling before, during, and after psychosis.Main Findings
After analysing all 10 interviews, I developed a theory about how sibling relationships change when one person experiences psychosis. This explanation involved three main areas, which I have summarised below.
1. How the sibling relationship was experienced over time
• Before psychosis, participants described their sibling relationships in lots of different ways. Many recognised their sibling experiencing difficulties long before psychosis.
• When psychosis appeared, it brought “chaos” and disrupted how participants and their siblings related to each other. Initially, any changes in behaviour caused confusion, with some attributing them to their sibling’s personality or life stage.
• As it became clearer that their sibling was experiencing psychosis, participants described their roles and responsibilities shifting. Many found themselves providing emotional or practical support, which was exhausting.
• Participants described a range of feelings about changes perceived in their sibling, including fear, worry for the future, guilt or a sense of loss. Some described anger and resentment.
• In the aftermath of psychosis, some relationships grew closer, with stronger feelings of care and mutual support. Others needed more distance or clear boundaries to manage these changes.2. Things affecting the sibling relationship before psychosis
• Participants described things that impacted their relationships prior to psychosis-related experiences. This included birth order (i.e. whether a sibling was older or younger), family size, culture, and overall family dynamics
• Some participants described lifelong caring responsibilities e.g. for other family members, or being aware of their struggles
• Big life changes, like moving away to study or to start a new job, affected how much contact participants had with their sibling, and could create feelings of guilt later.
• Ways of communicating across families (e.g. openly talking vs. frequent arguments vs. staying silent during conflict) were often present before psychosis, and tended to become more intense in response.3. Other influences on sibling relationships, following psychosis
• Participants’ experiences were also shaped by interactions with mental health and social care professionals, as well as wider societal ideas about psychosis. Many felt frustrated when support was poor or didn’t meet their sibling’s needs. Some felt ignored or left out by professionals involved in their sibling’s care.
• However, some siblings described helpful moments, such as when they received timely hospital care, family counselling, or when able to access ongoing community support. Support from friends, partners, faith communities, and peer groups also helped participants manage and remain involved in their sibling relationships.Conclusions and Recommendations for Services
This study demonstrates how sibling relationships change with one person’s experiences of psychosis, and changes are shaped by the ongoing needs of the person experiencing psychosis, family circumstances, and broader social factors. Importantly, the study points out that siblings’ ability to stay connected in relationships after psychosis depends on more than just the two people in the relationship; it also requires timely and helpful support from health and social care professionals. Mental health services should involve siblings more actively, considering their views and needs, and offer support accordingly. Looking ahead, more research is needed to examine how siblings’ experiences vary across different types of families and cultural settings, so that support can be better tailored and more inclusive. It might also be beneficial to interview both members of a sibling relationship, or even whole families, to think about how relationships change in response to psychosis and how services can help maintain these.
REC name
West Midlands - Edgbaston Research Ethics Committee
REC reference
24/WM/0098
Date of REC Opinion
18 Jun 2024
REC opinion
Further Information Favourable Opinion