WORKING WITH SIBLINGS: NEEDS AND INTERVENTIONS Dr Jo Smith Consultant Clinical Psychologist, Early Intervention Lead, Worcestershire Mental Health Partnership NHS Trust, UK

The nature of sibling relationships… ‘Sibling relationships… outlast marriages, survive the death of parents, resurface after quarrels that would sink any friendship. They flourish in a thousand incarnations of closeness and distance, warmth, loyalty and distrust’. Erica E. Goode, "The Secret World of Siblings," U.S. News & World Report, 10 January 1994

Sibling Relationships Longer duration than relationships with parents, partners, peers or children Persisting with varying degrees of intimacy and investment throughout the life cycle Adult sibling relationships tend to be renewed as children mature and leave home Important in maintaining morale in old age Provide companionship, emotional support and practical help, particularly in childhood and adolescence Sibling ‘bond’ intensity influenced by degree of access: being raised together, close in age, spending time together over a period of years, shared friendships tend to have more intense bonds

Sibling research Little focus on siblings despite importance in life cycle and potential vulnerability of well siblings Siblings report pervasive impact on lives and similar subjective burden to parents Few published studies on sibling experiences with recent onset psychosis Impact of onset and diagnosis have largely involved retrospective accounts Studies with siblings have identified guilt, fear about personal vulnerability, shame, anger, grief and loss, need for support, disruptions of normal development and feelings of parental neglect Siblings show similar levels of initial and current grief as parents (Miller et al 1990; O’Shea, Fadden and Smith(2003; Fisher and Steele 2004) Siblings more likely to resolve grief reactions to diagnosis compared to mothers (Fisher and Steele 2004) Family intervention has focused mainly on key relatives and specific interventions with siblings have been largely neglected

Research with Siblings Coping with First Episode Psychosis (Fisher and Steele, 2004) Alterations in their relationship with the affected sibling and other relatives Adverse impact on emotional well being Neglect of personal needs Difficulties in maintaining friendships Decreased academic performance Increased responsibility at home Ignored by psychiatric services Low awareness of genetic vulnerability* High levels of involvement in caring for the affected sibling* *Finding is discrepant from published accounts of individuals with siblings with a chronic psychotic illness

What is the likelihood of siblings coping with early psychosis? 60-70% of first episode individuals live with families Mean age of onset for psychosis is 21 years, mean age for leaving family home is 23 years Adolescent age of onset from 14+ means many siblings are likely to still be at home

Worcestershire EI Service Siblings Audit (based on caseload of n=66) 59 (89%) had siblings Total siblings = 113 Under 10 years = 5 (4.4%) years = 11 (9.7%) years = 20 (17.7%) 19+ years = 77 (68%)

Common Sibling Experiences Siblings struggle with the changes they observe in their brother or sister or their relationship Siblings lack knowledge and experience and can find it very difficult, distressing and frightening at times when someone in the family is psychotic Siblings may feel their parents are preoccupied and they do not get as much attention as the person who is psychotic Siblings feel for the sibling who is unwell Siblings may have anxieties about their own mental health and risk for psychosis Siblings rarely get information or support from services

Common Losses Experienced by Siblings loss of freedom to enjoy pursuits with peers and an increased sense of responsibility loss of opportunity to develop friendships and interests due to being too preoccupied, busy, guilty or embarrassed about their situation loss of the relationship with their sibling with psychosis and age/role reversal loss of own identity and self-esteem loss of educational/career opportunities and freedom to make independent life choices /plans loss of attention from parents Loss/disruptions to family life and functioning

Common Feelings Expressed by siblings (Canadian Mental Health Association, 2005) Uncertainty, lack of understanding and helplessness Family tensions and disruptions to family life A range of emotions including fear, anxiety, guilt, anger, stigma, embarrassment, envy, resentment, loss and sadness Sense of burden and responsibility for their affected sibling

Therapeutic Interventions with Siblings Few models within the research literature (most developed in physical health and learning disability): Support groups Information leaflets Activity camps/short breaks Personal stories Therapeutic board games Peer sibling support Family intervention

Rethink Siblings Survey (n=264) December 2006 Majority rated access to advice and support as inadequate: On what happens after parents are no longer around (89%) On how relatives illness affects siblings at different stages of their lives (89%) On relationships with service users (81%) On the impact of mental illness on the family as a whole (81%) On dealing with stigma (79%) About genetics and mental illness (76%)

Rethink Sibling Survey (n=264) December 2006 Service requirements: Accessible information: sibling oriented information packs (84%), dedicated sibling website space (76%), publications by service users on how they could be supported by siblings (77%) Active involvement: sibling newsletter (65%), web based chat rooms/ discussion forums (63%) Direct contact with other siblings: local support group or siblings network(53%)

Useful Websites ‘Sibs’: Generic website for siblings producing information sheets, regular newsletter, will take cals from siblings, runs workshops Sib-Links : New national network for siblings to share experiences and get support being set up by Rethink For children aged 5-12yrs who have an adult family member with a mental illness

Useful resources Young People and Early Psychosis Intervention (YPPI) Centre (2002): For brothers and sisters, information about psychosis Written by Kristine Horn and edited by Deb Howe, Australia South Worcestershire Early intervention Service (2003): Information about psychosis for brothers and sisters Adapted by Caroline Maynard and Jo Smith, UK Canadian Mental Health Association(2005): A sibling’s guide to psychosis: information, ideas and resources. Prepared by Sharon Mulder and Elizabeth Lines WFSAD (2001) Leave my stuff alone- a story for young teen siblings Written by Diane Froggatt, Canada

‘Psychosis in the family can be like a big cloud. It can be overwhelming. You think your family will never be the same…’ CMHA (2005)