evaluating the siblings network

Evaluating the Siblings Network 1

Evaluating the Siblings

Network

END OF PROJECT

REPORT 2013

The impact and legacy of Rethink Mental Illness’ project for the brothers and sisters of people with mental illness

A Big Lottery Funded project from July 2010 to June 2013.

2 Evaluating the Siblings Network

Contents

Executive summary 3

Introduction and project outcomes 5

Initial development of the Siblings Network 6

Project delivery: what the Siblings Network does and why 8

Volunteering and engagement opportunities 12

The future of the network 14

Conclusion 26

Who we are

Rethink Mental Illness is a charity that believes a better life is possible for millions of people affected by mental illness. For 40 years we have brought people together to support each other. We run services and support groups across England that change people’s lives and we challenge attitudes about mental illness.


The Siblings Network project’s aim is to build a community which supports and empowers the siblings of people with mental illness to better support their brother or sister and to look after their own wellbeing. To do this we provide online resources, factsheets, blogs, stories and videos, an online forum, local sibling support groups and workshops and events.

Executive summary

Siblings are better informed about how they can support their brother or sister

Evidence from our review process has suggested the project is helping ensure siblings are better informed about how to support their brother or sister with experience of mental illness. Statistics from the online survey show that the majority of people responding (53%) learned ways that they can support their sibling and that 46% of responders felt that they had learned more about the people that they can contact when their family needs help.

There were statements in the qualitative responses from the conference, workshops, online survey and support group focus group describing how people had benefited from accessing information, support and advice. People stated that they had felt more positive about their sibling’s illness, and that they gained insight, knowledge and an awareness of mental illness and mental health research.

People described how they valued this information and how they had applied it in support of their brother or sister. The workshops were reported as facilitating acquisition of insight into sibling’s experience of mental illness and that they provided practical information such as information on future planning, appointeeship and developing strategies and a pseudo care plan.

Siblings are provided with tools to support their brother or sister in their recovery

Evidence that the project is providing tools to enable siblings to support their brother or sister is demonstrated by the online survey which showed that 51% of people reported that they learned practical ways in which to support their sibling, 51% gained

The project has met all of its outcome targets up until the end of project year two and is on track for the end of the project.

Through our evaluation and review of the Siblings Network, the following key areas have been identified as having had particular impact on effectively supporting and empowering siblings.

Siblings are better informed about how they can look after their own wellbeing

Evidence showed that the project effectively provided information and tips to siblings on how to better look after their own wellbeing. The results of the online survey showed that the majority of people responding (73%) have learned more about the issues that they face as a sibling. The survey also showed that the majority learned ways of coping with emotions that they face as a sibling (63%), learned how to get support for themselves (68%) and picked up skills from hearing about how others coped (64%).

The qualitative data provided examples of how people became better informed through information on the Siblings Network website, learning from the experiences of others (via forums, support groups, workshops and the conference), conference presentations, workshops, and through being inspired to follow up on links to further information.

Conference and workshop feedback was highly positive in relation to information gained to benefit siblings’ wellbeing; for example, 85% of conference attendees and 84% of workshop attendees strongly agreed or agreed that their ability to cope with issues and emotions that they face as a sibling has increased.


confidence in coping with issues that they and their family face, and 37% learned ways to take action to get the support that they and their family needed. Conference and workshop feedback was highly positive in relation to providing tools to support their brother or sister in their recovery; for example, 86% of conference attendees and 92% of workshop attendees strongly agreed or agreed that they gained tools and tips that they could use to support their sibling.

There were statements in the qualitative responses from the conference, workshop, online survey and support group focus group describing how people had gained tools (knowledge, skills, and insight) which they could apply to benefit the recovery of their sibling with experience of mental illness. For example the support group helped build people’s practical resources and psychological resilience through sharing information, links to services and resources.

A sense of sibling identity is established

The project sought to establish a sibling identity. This included a personal sense of identity for siblings themselves from which they could view and address their experiences. It also included establishing an identity with families affected by mental illness and professionals who work in the field of mental health. The Siblings Network established that siblings are a group with specific needs that need to be met. It also promoted wider recognition of the importance of siblings own health and wellbeing and the role they play in supporting the health and wellbeing of their sibling with experience of mental illness. By promoting and advertising the project to a wide variety of groups which includes siblings, families affected by mental illness and professionals, the Siblings Network has raised awareness of the valuable role siblings play in the lives of their brothers and sisters experiencing mental illness and the needs of siblings themselves. Our evaluation of the project showed that siblings believe the project has achieved increased recognition for siblings and that they value this recognition.

The qualitative responses from the conference, online survey, workshops for Sibling Network members, and support group focus group indicates that siblings who have accessed the Sibling Network’s resources and activities feel a sense of sibling identity. People have reported that they feel that they are not alone in their experiences, that they are better able to define and validate their identity, and have a shared sense of identity as a result of finding the network. One person responding to the online survey stated that: “…this network and support has given me my sense of identity back.”

Reaching the siblings of people affected by mental health has been a significant challenge as there hasn’t been a project like this before and they are often “asked and included the least” by mental health services (Siblings Network survey 2011). They often find the project while looking for other things, for instance information on mental health and how to support their sibling, and come across a provision directly for them this way. We therefore feel there is a significant journey still to travel in terms of establishing a sibling identity. That is, to ensure that among professionals the distinct needs of siblings are recognised and responded to, and that those who have a bother or sister affected by a mental illness recognise their own needs as a sibling.

However, when siblings find the network, the response is overwhelmingly positive. Many older siblings report that they wish the Siblings Network had been available for them sooner, say 20 years before when their sibling first became unwell.

One sibling stated that the network: “Provided a support structure for me to think about what it means to be a sibling.” Enabling people to understand what it means to be a sibling of someone with experience of mental illness can allow people to define their own information and support needs and see the value in the support that they provide for their sibling with experience of mental illness, empowering them in their role as a sibling.


Siblings feel part of a community

A key aspect of the success of the project is that it has effectively developed a community for siblings. The website is generating a high number of visits and return visits (the same people visiting the site more than once). People are making use of the forums, downloading factsheets, reading and sharing blogs and watching the videos. The website can be considered to be a virtual community for siblings that facilitates access to physical communities created by the project such as the support groups. The value of this community was demonstrated through the feedback from the website. This feedback described how forums, support groups, the conference and workshops have allowed people to share experiences, feel that they are not alone, feel freed from silence about ‘sibling’ issues, reduce feelings of isolation and connect with, relate to, and share with other siblings.

The Siblings Network support groups are a key part of creating a sibling community. They offer a regular point to meet up with other siblings and obtain support from others in the group. The support groups offer a safe environment where people feel that they are able to open up, share with others, bring questions and issues and contribute to answering the questions and issues of others, be listened to, express feelings and talk about issues that they are not able to do elsewhere. People found that this community allowed them to feel and express that “it is OK not to be OK” and that they are able to ask for advice and that it will be freely given.

The conference and the workshops for Sibling Network members are also a key part in building a sense of sibling community. The conference survey feedback showed that 98% of people reported benefiting from meeting others at the event and the Sibling Network workshops feedback showed that 100% of people reported benefiting from meeting others at the workshops. The recorded interviews at the conference and comments from the workshops showed that siblings enjoyed and gained from the opportunity to meet and share with others, that it helped them to understand others were having similar experiences to them and that it enabled them to connect with other siblings.

Who is the project reaching ?

Siblings have benefited greatly from the resources and activities provided by the Siblings Network. The goal of the project was to target siblings in general; however, there have been some groups that have drawn on the resources to a greater extent than others. For example our analysis suggested that more women that men engaged with the network across all activities. Furthermore we had a lack of engagement from young siblings and those aged 60 and over and this paper explores possible reasons and possible approaches that could be taken in the future to secure broader engagement.

Key findings and next steps

Overall the network has met its aims and objectives and done much more besides. Through the project we gained significant insight into the needs of siblings and how these can be met. We believe that through the creation of a network and community, the project has improved the lives of people affected by mental illness and their siblings.

A lot has been achieved over the life time of the siblings project, but experience, research and consultation tells us there is still further to go. We want to firmly establish an identity for siblings, to empower and support siblings more comprehensively at a local level and engage with siblings we have not currently reached. In order to do this, we are building aspects of the network into our core delivery plans and seeking to secure further funding.

“IT IS OK

NOT TO

BE OK”


Introduction and project outcomes

The Siblings Network is the first project of its kind and developing the network has been a rewarding challenge as expressed in this report and through the case study journeys of siblings involved in the network.

Project outcomes and objectives:

The Siblings Network project addresses the following Big Lottery Fund Reaching Communities outcomes:

1) Stronger communities, with more active citizens, working together to tackle their problems.

2) Healthier and more active people and communities.

3) People having better chances in life, with better access to training and development to improve their life skills.

Within the project’s three year Big Lottery Fund bid, the Siblings Network proposed five key outcomes.

These were:

Outcome 1: 30,000 people are better informed about mental illness by 2013, leading to improved life skills in view of their carers’ responsibilities and to better support the family unit in dealing with their ill siblings.

Outcome 2: 8,000 siblings of people with severe mental illness share a better understanding of the illness by 2013, giving them the tools to work together to tackle common barriers to the recovery of their siblings.

Outcome 3: 300 siblings are actively involved in raising awareness of severe mental illness to campaign for equal access to services and employment and break down the stigma associated with it by 2013.

The Siblings Network is an information and support network for anyone whose brother or sister has experienced, or is living with, a mental illness run by the mental health charity Rethink Mental Illness.

It was launched in 2007 following requests from Rethink Mental Illness’ members and was informed by research in 2006 around the needs of siblings along with research in the field of siblings and mental health. In June 2010 the project was awarded three years Big Lottery Fund ‘Reaching Communities’ funding to develop the project.

The Siblings Network’s aim is to better inform siblings about mental illness and the ways in which they can support their brother or sister in their recovery and to provide a network in which the siblings of people with mental illness can learn and share experiences and find out how to better cope with the impact of mental illness on their own wellbeing.

The project supports siblings aged 14 and over, with no upper age limit, based in England.

This report summarises the findings of an evaluation report of the Siblings Network based on data collected through surveys and focus groups about the website, support groups, various workshops and our first national Siblings Conference. This report also references our benchmarking work at the beginning of the project and our 2012 consultation on the future of the Siblings Network and qualitative evidence collected throughout the project. We have also included information around our evaluation of the project in the end of year reports of 2010-11 and 2011-12.

Within this report we will provide an analysis of why and how we developed Siblings Network project outputs, how our objectives developed to where they are now and what we feel the future could bring for the project. It outlines the challenges we faced in reaching siblings, how we overcame these and the impact the project has had on the lives of siblings, many of whom had never received such support before.


Outcome 4: A minimum of 21 other social care agencies will be better informed about the needs of siblings and the information and support that can be offered directly to them, by 2013.

Outcome 5: 200 siblings will be actively involved in the national anti stigma campaign ‘Time to Change’ by 2013.

The Siblings Network has met or exceeded all of its outcome targets to date and is on track to do the same by the end of project year three.

How we have met our outcomes

The outcomes as achieved up to the end of project year two are summarised below:

Outcome 1:

• Reached an audience of 2,755,000 across England through 12 media opportunities.

• Received 42,612 unique visits to our website.

• Reached a further 10,000 people who work with or come into regular contact with siblings through our end of year report in year two.

• Extrapolating data from our online survey, we estimate that at the end of year two, 16,500 people have become better informed about mental illness through the Siblings Network and 24,900 people have new tools to support a sibling which they did not possess before they engaged with the network.

Outcome 2:

• 24,900 visitors to the website have new tools to support a sibling which they did not possess before they engage with the network.

• Direct face-to-face contact with 223 siblings through the network, including through our national event, workshops and support groups.

• 1112 siblings signed up to the regular email updates.

• Four sibling support groups which over 60 siblings had attended.

• An online sibling forum with 67 topics which had received over 500 replies and 174,939 views.

Outcome 3:

• 269 siblings signed up to campaign with Rethink Mental Illness.

• Engagement of siblings in campaign activities is in line with the percentage of siblings who expressed an interest in campaigning in our 2010 benchmarking survey.

Outcome 4:

• 21 social care agencies joined the professionals network as supporter organisations and 37 individual professionals signed up to the professionals newsletter.

Outcome 5:

• Identified over 200 new activists over the first two years of the project and engaged 107 people with Time to Change activities.

• Time to Change information and materials included in online content at our conference and in workshops.

The project is progressing well and we are on track to achieve all our project outcomes.

We have, through this project, had a significant impact on Siblings Network members’ understanding of mental illness and, while this is not a measured outcome within the bid itself, we have also impacted significantly on siblings own emotional wellbeing through the tools and information we have provided. We have found this additional impact on the wellbeing of siblings to be very important and contribute to outcomes 1 and 2 as:

• The siblings and other family members of people with mental illness are at a higher risk of developing mental illness so this can help them think about how to look after their own mental health and that of their own children.

• By looking after their own wellbeing, siblings will be better able to support their brother or sister and learn coping skills.

• The emotional impact of mental illness in families can be significant and it is important for siblings to be able to look after their own wellbeing in their own right.


Initial development of the Siblings Network

Among the top concerns identified by siblings when their brother or sister first became unwell were: finding out how to support their sibling, learning how to deal with difficult behaviours and wanting to know more about mental illness. Also included were a variety of issues such as: what support networks were available to them and their families, how they could help their sibling to return to meaningful occupation, genetics and mental illness, how to cope emotionally with feelings such as guilt, loss, isolation, fear and grief, what may happen in the future, wondering what happens after parents are no longer around, worries that their sibling would try to commit suicide, or in some cases siblings had been through bereavement, and how they could meet other people who had gone through the same things.

Having a brother or sister with a mental illness can stir up complex emotions such as sadness, fear that you will become ill too, guilt that you’re not doing enough and even anger. Many siblings support their brother or sister in some way and can often provide help and support to the whole family, but often do not have access to support or information themselves.

Our survey of professionals showed that although 90% of them felt that siblings should receive emotional support in family / intervention work, 75% identified a need for siblings to be involved in support groups and 90% would be happy to provide siblings with information about the Siblings Network in their mental health role, many had little or no contact with siblings within their role with 27% saying they were never in contact with siblings and 23% saying they were in contact with siblings in only 1 out of 10 cases. As one professional told us: “Sibs know a lot... [they] often know first that it is a mental illness, but are asked and included the least.”

In 2011, we carried out a survey of people who have a brother or sister affected by mental illness to find out more about what they would want from the Siblings Network, how we can reach out and provide information and support, and what help is currently offered to siblings. We also conducted a survey of professionals who work in mental health. 240 siblings and 90 professionals took part in this benchmarking survey, providing us with a valuable insight on which to develop the project and plan how to best reach siblings.

Our benchmarking was vital in developing the project and focused around identifying siblings’ needs, such as what siblings want to know, where siblings currently search for help and advice, where the gaps are and how we can reach them, what support siblings are already using, emotional support needs and caring responsibilities. We also explored the contact professionals had with siblings and what they felt would be most useful for us to deliver in order to help them better support siblings.

This consultation gave us an idea of the diversity within sibling experiences and how this affects their information and support needs – and also of the common issues and themes that the majority of siblings share. Siblings play many roles within the family depending on their family situation, their personal circumstances, their relationship to their sibling, the nature and severity of their siblings illness and their knowledge and skills base, among other factors.

Some siblings may be primary carers, while others may be secondary caregivers and some may have little to no contact with their brother or sister at the time they find the project for a variety of reasons. However, there remain many similarities in their experiences and strong themes in their information and emotional needs.


We also reflected on research in the field of siblings and mental health which emphasised this gap in professional support and information provision for siblings. For instance, it was identified that although a sibling relationship is most likely one of the longest we will experience in our lives, with many siblings providing care, both directly or indirectly to their brother or sister, services “routinely fail to recognize the significance of the sibling bond” (Sin, Moone & Harris, 2008).

Our consultation and research enabled us to build our initial project plans. We then developed a steering group to oversee the project made up of siblings, one professional working in mental health and members of the project team. They have played a strong role in steering our project output and ensuring that the project is designed by siblings, for siblings which has been vital to the project’s success.


Providing information, advice and tools

Gaining access to information was stated as the top priority for siblings, particularly around finding out how to support their brother or sister, how to deal with difficult behaviours and information about mental illness.

Siblings may have different information needs depending on what stage they’re at in their family’s mental health journey, and their circumstances. For instance, someone whose sibling has become unwell for the first time may want quite basic information around mental health and how they can support their sibling, while someone whose brother or sister has begun to take a step toward recovery may want information around how they can support this. Having access to information can build people’s ability to cope and to help support the whole family in their recovery.

Siblings can gain information, advice and tools to support their sibling from a variety of different sources and mediums through the Siblings Network.

They can download factsheets and watch information videos on the website, which cover themes such as planning for the future, supporting your sibling to find meaningful occupation, genetics and mental illness, information sharing and confidentiality and a variety of other topics siblings told us they would find it helpful to be informed about. By the end of year two there had been 7100 downloads of sibling resource documents and our videos had received 2849 views, along with information being read on the Siblings Network website itself.

Visitors to the website are also able to gain information and tools from shared personal stories online in the form of blogs, videos and personal stories.

In addition, siblings have gained information, tools and advice from our workshops, events, support groups and online forum, from both professionals working in mental health and from other siblings when sharing experiences.

Our evaluation of the project shows that the Siblings Network is achieving its goal of ensuring that siblings are better informed about mental health so that they are better able to support their brother or sister with mental illness, through the website, resources, events and support groups.

Project delivery: what the Siblings Network does and why

“ A really empowering course. It feels great to have connected to such supportive, insightful and friendly people. I feel like I can cope a bit better and also keep a healthy space for myself as well as keep helping my sister.”

An attendee of our Youth Mental Health First Aid course for siblings


In addition siblings have gained information and tools through the network to help them look after their own wellbeing. This is important as siblings can lessen the impact of their brother or sister’s illness on their own mental health and also because they are then in a better position to support their sibling. So by receiving information, siblings can be empowered to support their sibling while looking after their own needs too.

In addition to the practical information received through the project, many of the participants in Siblings Network workshops stated that they felt an emotional connection to the workshop material. This adds value to our information provision as the most meaningful and most valued learning experiences are often those which involve emotional stimulation and the amount of emotion involved can be a measure of the meaningfulness of the learning (Boeree, 1991).

Our workshops have been a key element in providing tools and information to siblings. They bring together formal information provision and training with the benefits of sharing knowledge with peers gained through personal experience. In addition, attendees provided valuable emotional support to one another.

During the project we delivered Mental Health Awareness (information) workshops in schools. For adult siblings, we delivered Mental Health First Aid training and 12 individual workshops devised for our two national Siblings Connect events and for use as standalone sessions.

We developed the 12 workshops for our Siblings Connect event in discussion with the sibling steering group based on key issues that siblings had informed us they wanted more information around.These included the following workshops:

• Talking space: Share experiences, advice and problem solve

• Talking to professionals: Common issues for families

• Planning for the future: Care and support options for your sibling

• Adjusting to change and moving forward: Techniques for learning to cope

• Normal?: A play about sibling experiences

• Recovery and mental illness: Latest research and how siblings can help

• The sibling role: How can siblings make a difference?

• Communication skills and psychosis: Practical skills for better communication

• Challenging stigma and discrimination: Starting the conversation about mental health

• Schizophrenia: What’s new in research?

• Psychosis: The latest ideas in treatment

• Our voice, our rights!: Ideas and tips on campaigning for the rights of people affected by mental illness

Some of these workshops deliver what we would define as more emotional outcomes such as our workshop ‘Normal?: a sibling play’ which involves a play about sibling experiences being performed followed by facilitated group discussions around common themes in the play. This was very successful in allowing people to explore common emotions and experiences they share as siblings and to feel that they are not alone.

Other workshops have been designed to deliver more practical advice, such as our workshops on ‘Recovery and mental illness’, ‘Confidentiality and information sharing’ and ‘Planning for the future’.

In addition to the workshops, our Siblings Connect events, which had 120 and 220 attendees respectively, included opening talks with a mix of expert advice and personal experiences. This helped to immediately create an understanding of the shared experiences and value of the knowledge of those who were attending the event.

The Youth Mental Health First Aid training provided siblings with information they could use to better support their brother or sister while also helping them to better understand how to look after their own mental health.

All but the schools workshops were delivered for siblings aged 18 and over with no upper age limit.


Support for young siblings

We had planned to deliver a series of workshops for young siblings aged 14-18 and 19-25 and devised these to be delivered in local areas based on consultations with siblings. Developing links with local Early Intervention Services, we had a positive response to our plans and were ready to deliver them in Worcester, London and Essex. One such event was due to be held in Worcester, in partnership with Worcestershire Early Intervention Service, who already have programmes of working with siblings and so we felt would have a strong chance of enabling delivery. However, even in this case we had no uptake. In addition we planned to hold a young siblings workshop as part of our Siblings Connect event, which we promoted through youth mental health charities and Early Intervention Services with so low an uptake we were unable to go ahead with this workshops either.

The adult workshops and events have been well-subscribed with attendees identifying their need for this information and support and signing up and in fact we had to close bookings early for our 2013 national event due to oversubscriptions. However, we were simply unable to get young siblings to engage despite concerted efforts to continue and a hope that interest would build as the project gained momentum.

There were two main reasons received in feedback as to why we were unable to reach young siblings. These were that young siblings often do not recognise a need for this support and that parents had been reluctant to give consent for their ‘well’ child to engage with mental health services.

KEY LEARNING

We believe the low uptake of our young siblings events indicates that while the impact of mental illness on adult siblings was more fully understood by the siblings themselves, which meant they had more of an idea of their information and support needs and could identify that our workshops were the right thing for them, younger siblings do not, in general, seem to want or need to engage with direct support provision. When interviewing adult siblings at Siblings Connect 2012, they all said that when they were younger, they wouldn’t have wanted this kind of support, though they found the project incredibly helpful themselves.

After one year, we had to change our delivery approach. Due to this, we changed our young sibling’s delivery method to Mental Health Awareness sessions to 14 – 25 year olds in schools and other youth and education settings. This meant that siblings did not have to pre-identify as the siblings of people with mental illness, or be referred to the programme, in order to get information and signposting to further support as we delivered the workshops to full classes or groups. 95-100% of attendees agreed that they had gained an understanding of what mental health means. The sessions also had a significant impact in terms of the young people’s understanding of the services available to young people to support their mental health and how to access support for themselves or for someone else. Young people also reported increased confidence in talking about mental health following the sessions.

10% of the school-based participants identified themselves as having a sibling with a mental illness. However, we know that more of those who attended will go on to have siblings affected by mental illness, or may develop mental health difficulties themselves and so educating them at this early stage is important.


The benefits of the Siblings Network on the wider community

The benefit of supporting siblings is not only on giving them the tools and information they personally need, but that they will also be able to share this with their family and wider community too.

“I went straight home and shared the information with my parents and brother who is also trying to help my other brother. They learnt a lot and my mum called the Early Intervention Psychosis Team this morning.”

An attendee of our Youth Mental Health First Aid for siblings training

This particular attendee also works with young people and was able to use this learning in her own work and wider life outside of her family.

Another attendee expressed that they would be:

“Sharing knowledge gained on this course with family/friends colleagues.”

highlighting the wider reach of empowering siblings with information, confidence building tools and workshops on their families and communities.A sibling attendee of our Siblings Connect event in 2012 described the feeling that he came away with around the empowerment siblings can feel from gaining support and information:

“Although it’s still in its infancy, it’s a growing movement and I think it’s got a lot of potential to help a lot of people, you know? It’s almost revolutionary in the way it’s going to help brothers and sisters, of which there are many going from completely being unrecognised to being a force of change.”

Idea developed in

brainstorm session /

through survey and

consultation work

with siblings.

Plan and rough draft

created by Siblings

Network team /

Rethink Mental

Illness and external

advisers.

Plan / draft submitted

to the steering group

for discussion.

If workshop is

repeated, evaluation

taken into account

and worked into the

next session.

Information available

on website. In case of

workshops, delivery

and evaluation.

Points from steering

group discussed and

resource / workshop

devised by Siblings

Network team.

Process for developing Siblings Network information and workshops


How Siblings Network information and workshops are developed

We developed our information resources and workshops based on requests and feedback in our consultations and benchmarking work with siblings. Based on their stated needs, we developed a range of advice factsheets and videos. Siblings also told us that they found it useful to hear the stories of others which is why we developed story sharing spaces on the website.

All of our factsheets and the workshops devised for our Siblings Connect conferences in May 2012 and March 2013 have gone through consultation with siblings. The process for developing information factsheets and workshops is set out in the process diagram on page 15. The involvement of siblings throughout the process has been integral to the success of our workshops, events and resources.

Building a community (peer-to-peer support)

In addition to information provision, a key aspect of the success of the project is the development of a community for siblings through our website, siblings online forum, support groups and during workshops and events.

The importance of peer-to-peer interaction and support has been demonstrated in feedback through our website survey, on our online forum, a sibling support group focus group and through evaluations of workshops and events.

CASE STUDY

Neil, an attendee of our first national Siblings Connect event and member of the London sibling support group

Neil is in his 40s and has two brothers with schizophrenia and has been the main carer for both of them since the early 1990s. He discovered the Siblings Network when he was having a particularly difficult time, heavily involved in supporting one of his brothers through a serious relapse while starting a new job. Struggling to manage supporting his brother from the transition out of hospital, the emotional impact of seeing his brother so unwell and a new job, he was signed off work for a month.

“I began to struggle. I would cry after every visit to my brother and it was really painful to see him so unwell and on such heavy medication.”

Neil’s partner told him about the Siblings Network and sent him a link to the Siblings Connect event which he felt was a “light at the end of the tunnel”. This was something he could aim for, to help him reevaluate things, his relationship with his brothers and a work-life balance.

At the event, Neil found a warm atmosphere and a sense of positivity in being around other people who had gone along the same road. He was able to talk about his experiences and know the other person had been there or were going through the same things. The day gave Neil the encouragement to keep going. He got the opportunity to take part in activities from both a practical and emotional perspective and it gave him a lift just listening to other people’s experiences and to the practical advice. He had the head-space to think about his relationship with his sibling and to talk to others.

Since the event, Neil has joined the London sibling support group and has attended other Siblings Network workshops. He is back to work now and has found a much better balance around supporting his brothers, his work, life and own wellbeing.

“It was a rollercoaster of a year, but I have more emotional stability now. All the work still goes on, but I’m in a much better place to do it.”


The Siblings Network community enables siblings to:

• talk openly in a non-judgemental space.

• share experiences and advice which can validate their own experiences and enable them to find out ways that others have coped with similar situations.

• have a go-to point for instant support either face-to-face or online depending on need.

• learn more about mental illness and the support available to them and their families.

• connect with other siblings.

• feel freed from silence about ‘sibling’ issues.

• feel able to ask for advice that will be freely given.

• feel able to express things that they are unable to express elsewhere.

• reduce feelings of isolation with the realisation that they are not alone.

As a result, members of the sibling community have reported being better able to cope.

“It has been amazing to share stories with other siblings. Learning from everyone’s experiences and sharing my own has been very valuable for me.”

The different elements of the sibling community means that it caters to siblings with a variety of needs and various engagement preferences.

Support groupsThe Siblings Network support groups are a key part of the sibling community, in particular for the most active members of the community as they offer a regular point to meet and share support with others. The groups offer a place to talk freely, ask and give advice, bring questions and feel part of a group with a shared understanding of what you are experiencing.

Some siblings attend the group every month while others may attend one session, or attend less regularly, depending on their level of need at the time.

“There was a lot of positive energy that we were all in it together and because we were all ‘newbies’ it felt very spontaneous. I hope it can continue that way and we can all help each other along what is clearly a crooked and rocky road ahead for all of us. The support I felt leaving there was tangible.”

A London sibling support group after their first visit

The groups are for siblings aged 18 and over, and have had participants as young as 18 and in the over 60s age bracket. The mix of experiences and ages has been very helpful to the group as has the value of lived and shared experience:

“When my brother was diagnosed with schizophrenia it felt that there was no hope for a normal future. However, when I visited the Rethink Mental Illness group in London, I met brothers and sisters of people who had been diagnosed thirty or forty years ago. They showed me ways of dealing with issues that might arise in the future. I decided to open a group in Exeter so that local people didn’t have to travel far for support. I hope that people from all ages join the group so that we can all benefit from a variety of experiences.” 20 year old sibling who regularly attended the London sibling support group

The sibling support groups are facilitated by siblings and follow the format of regular informal sessions in a particular local area, where everyone can talk and share experiences. Some groups hold workshops or get speakers in, while others spend the time sharing experiences. Our groups are supported by the Siblings Network team and Rethink Mental Illness’ Groups team.

We currently have five local sibling support groups in Bristol, York, Brighton, South London and North London. However, in addition to these, we did have groups in Exeter and Norwich which unfortunately closed. We believe this was because the groups were in cities with smaller populations which hindered their ability to build momentum despite local media work, promotion via local mental health services and community centres and promotion through the Siblings Network. In addition, although the group facilitators were very proactive in these two areas, there was only one group facilitator per group as no


one else felt they could commit to this responsibility. This made it difficult to continue those groups as they had low turnouts which was demoralising for the support group facilitators and in one case the facilitator moved to another city leaving no one able to continue leading the group. Siblings often come for support as and when they need it, which is not necessarily regularly, and so in large cities where there are many group members, this is not an issue, but in smaller towns this can lead to low turnouts and a difficulty maintaining engagement month to month.

We learnt from this that in smaller areas, we need to think about a different model of meet ups, for instance quarterly meetings. We also learnt that it is important to have, wherever possible, at least two facilitators to help support one another supporting the group wherever possible, which is a model we have followed with new groups.

KEY LEARNING

Through a support group focus group we held at the South London group, people expressed that they felt as though the group was “unique” and that they could not obtain the same support elsewhere. Knowing other people in the group have similar experiences allowed people to open up and tell their experiences and stories, which in turn can help others to feel connections and share their story too.

The group allowed people to feel safe; that there are no barriers to them expressing themselves in relation to being a sibling of someone with mental illness. It allowed people to feel that they will be listened to and that they can express what they feel they cannot talk about elsewhere.

Sharing experiences changed people’s perspectives. It allowed greater understanding of their sibling who experiences mental illness; to see them, what they experience and how they cope with mental illness and medication in a more understanding and compassionate light.

Within our London support group focus group there was uncertainty and disagreement over what changes might be made to the group and what its future might be. Some people wanted the group to be more formal with regular workshops and talks, whilst others felt that it was important to keep the group informal and allow people plenty of time to talk. Some wanted more social activities and some felt the group needed to be more regular and to have more facilitators.

In April 2013, we held a meet up for all group coordinators in current groups, newly recruited facilitators and for those who would like to start a group and based on this the project team has developed ideas of how best to support the groups to grow in the future, taking into account the varied needs of participants. Groups facilitators were able to learn from one another and share their models of working. We also had the opportunity to find out how we could most respond to their needs and ensure long term survival of the groups. As part of the session, we discussed and practiced facilitation skills and tools and group facilitators also have access to online trainings to increase their skills.

It has been a learning process for all of our groups and the Siblings Network team as we’ve discovered what works best for each group and they have developed some great models for their groups. We are now in a better position to support facilitators to respond to this need as a way to ensure long term survival of the groups.

We have found that people’s needs and experiences can vary, as can what siblings gain from the community as exemplified in the personal stories of Helen (page 20) and Simon (page 22). The community is adaptable to these different levels of need.


Online sibling communityThe online community is an anonymous space where siblings can post questions and experiences and answer or support others. The siblings forum is integrated into RethinkTalk, a mental health forum for anyone affected by mental illness.

This means that although the majority of people who join discussions in the sibling forum have a sibling with mental illness themselves, parents and people with mental illness can also share their experiences, which can be a very valuable help.

Siblings who perhaps cannot ask their own brother or sister about their experiences as they are very unwell are able to hear stories from other people with experience of mental illness about their mental health journeys or recovery, and gain an understanding of what has helped them.

“I think this forum is so important because you need to be able to offload and family/friends are not always able to cope with the feelings we siblings have.”

CASE STUDY

Helen, a sibling in the London sibling support group

Helen is in her early 20s and has a sister with schizophrenia who lives at home with her parents. Since her sister was first diagnosed, she has moved away to another city but is in regular contact with her family.

When Helen’s sister became ill, it was completely new for her and her family, they didn’t even know schizophrenia existed. Helen needed support as things were difficult at home.

She found the South London sibling support group when she searched for support groups online. Helen was not searching specifically for siblings, but for support for carers or people looking after someone with mental illness. She was already part of a relative’s group which was open to anyone, carers, siblings, parents.

When she found the siblings only group, she found it helpful as it was about the closeness of the sibling relationship in particular, rather than a focus on parent issues. Everyone in the group is a sibling and has something in common and in addition they are free to talk about any issues they have with their parents which she felt unable to do when there were parents there as well.

For the first few times Helen visited the group, she didn’t feel ready to talk and would feel upset, but she returned each time as she found it helpful to be around other people who shared the same experiences. After some visits she felt ready to talk and share her own experiences too. She gained in confidence around speaking about her experiences and mental illness. Things are going much better for Helen’s sister. Helen continues to attend Siblings Network events and workshops and attends the support group when she needs it.

“ My sister is so well at the moment but if she was ill again in the future information is there. I can go on the website and look at it or go to the group again and talk about it.”


KEY LEARNING

Online forum members are able to express emotions and issues that they may not feel able to discuss with close family and friends, either because they feel they won’t understand or because it feels inappropriate to raise the issues. The anonymity of the forum can enable very frank conversation.

The community takes great efforts to help those in distress with visible results, sometimes providing practical suggestions and sometimes providing emotional support which can be as simple as showing the person they have been listened to.

“I am going to look further into this sibling support network because its only through forums like this that I realise we are not alone in what we are going through... I have never really spoken to anyone about this, I just feel like I have lost a sister, as I am sure you feel too. And we have to grieve for that loss of a relationship.”

A sibling responding to a post in the forum

KEY LEARNING

We have learnt that the way siblings approach this support is often to use the forum when they need it, which can be fairly sporadically. While there are some regular sibling forum users, many others come along when they need to talk and do not return at other times. However, there are always siblings, moderators, people with experience of mental illness or carers and friends there in support. This is different from the local sibling support groups which are only attended by siblings and often have regular repeat attendees.

Again we have learnt from this that siblings do not always require regular support, but do benefit from knowing it is there when they need it. The benefit of the forum is access to a community at any time, anonymity and community members with a broad set of lived experience and knowledge.

The forum is moderated, which means that while people can help each other with their own personal advice, someone from Rethink Mental Illness is to hand to signpost to information and support provision and ensure that there is suitable help in crisis or particularly difficult situations.

“ I had only just discovered this site on the day my brother was sectioned... and it was a huge source of support for me. It was the first time I realised there was any support for sibling of people affected by mental illness – and I very much appreciated everyone’s messages and kind words at a time when I was feeling very alone, angry and upset about my brother becoming unwell again.”

A member of the Siblings Network online forum


CASE STUDY

surprisingly for him the strongest and most powerful aspect of the course was the shared experiences, something he realised he had often undervalued.

Some people in the workshop told him how helpful they found the monthly support group and so he attended it again, a year on from when he originally came to the group. He felt people were warm and friendly, consoling and sincere, challenging and understanding too. People asked questions, other people answered them and he felt like he learnt so much from the group. For Simon, it was the perfect example of what a group like that should be, with different age groups, a good mix of male and female and the whole thing just seemed to click.

At the groups and workshops, Simon is able to bring his learning experiences to share with the group along with his personal experiences, which other members of the group find helps, and gain from everyone else’s experiences. Simon thinks that group dynamics at their best can often reveal people at their best, something which can be incredibly moving. He admires people in the group’s determination, their fortitude, their ability to overcome obstacles and solve their problems.

“ I came away from that session feeling deeply moved, and humbled, and like I had been a part of something special.”

Simon has a brother affected by schizophrenia. He had gained a lot of skills and information before finding the network through family skills programmes at a local mental health service. These have helped him and his family work together to support one another and his brother.

He found the Siblings Network through a Google search around the words “brothers, sisters, schizophrenia, sibling” as he was interested to know if his experiences of trauma following his brother’s illness were unusual. Simon was engaged by the project when he found the website as he could simply click on a video link to hear someone saying something interesting. Hearing people’s experiences made him want to read more. Through the website, he found out about a local support group which he attended and found really helpful.

“We laughed all the time and everyone had interesting stories and it was nice to know that other people were in the same boat, and struggling just as much.”

However, when he attended his second support group he found it overwhelming and decided it wasn’t for him. Although he could see that for some people sharing their experiences has a real value, he felt his interests were in gaining practical information and didn’t feel the group was for him at that time.

Simon was more interested in focusing on practical information and so attended a Youth Mental Health First Aid workshop. He had already attended skills workshops for families outside of the project and so has a lot of practical tools which he and his family use to coordinate a strong support network for his brother. When he attended the course, he found that it helped reinforce information he already knew, but


Workshops and events as communityWhile the workshops and events provided a space to learn about mental health, how to support your sibling and how to look after your own wellbeing, they also provided a valuable chance to share experiences and were another key part of building a sense of sibling community. The first Siblings Connect conference survey feedback in May 2012 showed that 98% of people reported benefiting from meeting other at the event while that figure was 100% for those who attended the sibling workshops.

Siblings who meet at workshops and events can from strong bonds and go on to support each other post event, join a support group or meet each other at future events.

“The building on relationships formed last year and surprisingly bumping into someone I know, but didn’t know had a sibling with mental illness.”

An attendee of national event Siblings Connect 2013 on what they liked best about the day

“I came away from Siblings Connect feeling that I liked my new family and they liked me. And I also look forward to the safe and comforting atmosphere of our next family gathering.”

An attendee of Siblings Connect 2013

The community feeling and emotional support came as a surprise to many attendees of our workshops and events. Through interviews and during our steering group discussions, it was interesting to discover that some siblings did not initially attend workshops for the reasons of talking to others and joining a community where they can share their emotions and thoughts.

Many would choose a workshop but not a support group as they felt that they wanted practical support only, but once they experienced the sharing of experiences within the community, they often realised that this was very helpful.

KEY LEARNING

The workshops and events can act as a gateway to the community for people who may not directly look for that kind of support but who go on to find it helpful:

“My Dad has been involved with Rethink Mental Illness for years, and when he told me about the siblings event I wasn’t really interested. But I went to support Dad, to show willing. It didn’t occur to me that I needed anything. When I arrived I looked at the stalls and it really hit me, and initially I just thought ‘I want to get out of here!’. I was feeling all these emotions I never knew I had and it was profoundly moving. I realised we were all there as we have siblings, which in day-to-day life you just never talk about, but we all had this in common.”

For this reason, we had to revise our communications to meet their perceived needs before they found the network, i.e. to find information to help them support and understand their sibling’s mental health or to support their parents, and then once they had found us, present them with the practical, emotional and story sharing support that so many of them have found helpful in aiding their ability to cope. Once siblings have found the network, there is a common reaction in that they realise they do need this for themselves and that it meets a need they hadn’t yet conceptualised.

Website as communityThe Siblings Network website generates a high number of repeat visits at 32% over the whole project. People can use the forums, download factsheets, read and share blogs and view the videos. Hearing the stories of others can help people feel that they are part of a community and sense they are not alone. The website can be considered to be a virtual community for siblings that facilitates access to physical communities created by the project such as the support groups and more active online activities such as talking on the online forum.


CASE STUDY

Martha is in her early 30s and has a sister with bipolar disorder. She came to the network as a consultant on an idea for workshops for young people and then joined the sibling steering group.

She finds it useful to express things artistically and through joining the network, was inspired to develop an art project about her personal experiences as a sibling, which she consulted with the steering group on. Her project explored what it can feel like when your sibling goes into hospital and was well-received.

As a member of the steering group, she has helped develop the network resources using her personal experiences, and has also used her artistic skills to bring this element to the conference, enabling other siblings who find this method a helpful way of sharing to contribute. She led a Siblings Corner stand at both national events where she collated art, stories and poems from siblings and siblings were able to add artwork and thoughts on the day too.

Martha is going on to create a new arts project including workshops for siblings as a result of her experiences through the network, in collaboration with the Siblings Network project.

Although she hasn’t been to the support groups, she’s glad they are there, and feels that she has gained a lot through meeting people on the steering group and through sharing her experiences in a practical way as part of the steering group sessions.

Image from “We go to Sea with You” by Martha Orbach www.wegotoseawithyou.com


Volunteering and engagement opportunities

There are many involvement opportunities through the Siblings Network which might be right for different siblings at different times, depending on what stage their at, their needs and situations.

The Siblings Network provides volunteer opportunities for siblings at different levels involving different time commitments.

Volunteering opportunities include: member of the steering group, workshop facilitator, sibling support group coordinator/facilitator, consulting on the project, sharing story online or in the media, supporting events

There are also different opportunities to engage with the project which include: joins a group, attends a workshop, member of the online forum, campaigns with Rethink Mental Illness and Time to Change, reads information, watches video, receives newsletter

The level of time commitment a sibling will have depends greatly on their circumstances and what they find personally helpful.

For instance, some siblings who are at a high level of need, feel they have less time to engage fully with the network. They may prefer to engage by simply reading some information on the website, talking to an adviser, or perhaps by dropping in on the online forum. However, when these siblings have a lower level of need, they may then feel ready to get more involved and have more time to commit to involvement in the network, for instance supporting others in a group.

Inversely, some siblings who are in a high level of need, will find it most useful to engage lots of time into the project and they may find as their needs go down that they do not feel the need to engage with the project at all. This may include regularly attending events or a support group, or perhaps becoming a member of the project steering group or a support group facilitator.

This balances well in that siblings who are in a better space to support others will be involved in the network and able to help other siblings who perhaps need more support at the time. The diversity of siblings involved and their level of need when they do engage, from siblings who are experiencing high-trauma due to their situation, to siblings who want to help others by volunteering, is a real asset to the project.

Members of the Siblings Network can provide feedback to one another through the network. Those who are at a lower level of need and are engaged within the network are able to validate their experiences and knowledge by helping others and share the value of their learning around how to cope. Those who are at a higher level of need can feedback in turn to siblings who are helping them with their experience, empowering the person supporting them by learning from them. They can also gain tools of coping that they may later share with others in the network.

We find that siblings select what feels best for them at any one time, though this may change over time, and equally they can often be surprised by new opportunities which they find useful, such as a sibling who took on an active facilitation role in a support group and found that this was even more beneficial to her than belonging to the group as a general member.

It is important to provide these different levels of engagement opportunities as we have found that siblings have very varying time commitment abilities.


Volunteering

The reasons for siblings taking a more active role and volunteering are various. Some feel unable to support their sibling and are frustrated by this so want to take a more active role in supporting others in the field of mental health. Some enjoy sharing their expertise with others as they know the benefits of their own knowledge gained over time. Other siblings find the support and experience of, for instance, taking an active role in the steering group fulfilling and emotionally helpful, while they would feel uncomfortable attending a support group designed specifically for emotional support. Many siblings want to volunteer their time to do something helpful.

“I’d like to create something that would be good for people who were in crisis as we were. I don’t want other people to be at a loss in the way my family was for so long. Facilitating the group has given me the opportunity to help other siblings.”

A support group facilitator

Campaigning

In addition to involvement opportunities that support the Siblings Network community directly, such as leading a group or sharing your story, two of our Big Lottery Fund outcomes were around engaging siblings with Rethink Mental Illness campaigns work as well as the anti-stigma and discrimination campaign Time to Change which Rethink Mental Illness run with Mind. We met our targets for these outcomes, which had been developed to empower siblings to speak out about mental health and champion our campaigns.

We encouraged siblings to campaign by holding campaigns workshops for siblings at our two national events, embedding Time to Change and campaigns information into our events and signposting siblings to our campaigns through the Siblings Network email updates. Siblings did engage with this, with good feedback to the workshops which were attended within our national event workshop offering and also by signing up as e-campaigners and activists with Rethink Mental Illness.

However, we also learnt that on finding the Siblings Network, campaigning was not a priority for the people engaging with the project. Because the support offered by the network is so new to siblings, it is also important not to overwhelm them, for example by ensuring that we have a clear accessible information and support offer. Our learning and reflection from this is that although opportunities such as campaigning and fundraising can be important to siblings, campaigning is often not siblings main priority when they join the network and the focus we currently have on this in terms of our outcomes is not aligned to siblings priorities when they find the network. Their focus is instead on learning how to support their sibling and get support for themselves.

As the Siblings Network sits within Rethink Mental Illness we know that siblings can easily access information on our campaigns and those of our Time to Change campaign when the time is right for them and we will continue to encourage this, but not as a focus of the Siblings Network project itself. One sibling told us they felt “overwhelmed by the campaign trail – need all my energy for my sibling”. We feel we must first build a strong sibling community and identity and mobilise this as a community in itself before we can direct them to campaign in their own local community, which they may take on as and when they feel appropriate.

Another challenge in having siblings ‘speak out’ about mental health through the project, is in the fact that they are not disclosing their own mental health, but that of their brother or sister. We have many siblings who would like to talk out openly about mental illness in the media, in videos and online, but who are unable to do this as they do not feel their sibling would be happy with this, or that it may increase symptoms such as paranoia for their sibling or in some cases their sibling is too unwell to ask permission, or they become unwell during the time we are working on the story project.

Due to this, we have offered a variety of different ways that siblings can get involved by sharing their story, many of which are anonymous. In this way, public story sharing has been a significant challenge, though when we have the results have been very helpful at reaching wider audiences, such as through media work, or in our sibling personal stories videos.


Engaging professionals – why and how

It has been important to engage professionals with the network. As we discovered in our benchmarking surveys, professionals often have little or no contact with siblings though as we’ve outlined, siblings can play an important role in the family and supporting them can in turn aid the work of services whose aim it is to support the person with mental illness.

We developed an information area on our website for professionals along with a professionals online forum to enable them to share best practice around supporting siblings and a quarterly email update highlighting best practice ideas, the latest research in the field of siblings and mental health and what the project is offering.

However, we have learnt that professionals, though interested in finding out more about the project and what we can offer, have limited time to share their ideas in an online network due to their commitments to their roles. We hope that by acting as a hub for up-to-date information and ideas around how to support siblings, we will be able to support them to better involve or signpost siblings in their work and that with time this will lead to siblings being considered as an important part of family interventions, which they are often left out of at present. We will continue to collect best practice ideas and disseminate them to professionals through our network, but understand that they may not engage with the network actively on a forum. As an alternative we started a LinkedIn siblings and mental health group for use when anyone wishes to post a question to other professionals.

KEY LEARNING

We need to provide easily accessible information for mental health professionals that they can read and give to people with experience of mental illness and their families.

By the end of year two, we had 21 social care agencies signed up as supporter organisations of the network and in addition we had 37 professionals signed up to our quarterly professionals update which is now at a list of 67.

The newsletter has had a positive impact on professionals understanding of the issues faced by siblings, with one professional who receives the newsletter saying:

“A lot of the support we have provided in the past [for siblings] has been informal and by having an active online siblings network I hope more people can access support and information.”

Community Mental Health Nurse, Early Intervention Team

Who we are reaching – demographics analysis

Siblings have benefited greatly from the resources and activities provided by the Siblings Network. The goal of the project was to target siblings in general; however, there have been some groups that have drawn on the resources to a greater extent than others. The evaluation has found that there have been greater numbers of women supplying feedback for the website (Females = 82%, Males = 18%), attending the conference (Females = 74%, Males = 26%), workshops (Females = 68%, Males = 32%) and support focus group (Females = 80%, Males = 20%). This could be explained by a number of factors: a greater proportion of women may provide care for siblings or choose to engage in activities and resources provided by the Siblings Network.

Nonetheless, statistically there are equivalent numbers of men and women with siblings who experience mental illness so the project may need to seek to engage more with men and specifically target men with aspects of its work to meet the needs of this harder to reach group.

The figures for the website survey, workshops and support group focus group also suggest that there is a lack of engagement from people 60+ in the Siblings Network and the project may wish to consider whether it should seek to engage with and provide resources specifically targeted at this group.


The Siblings Network has been designed to be sustainable. The Siblings Network website and resources have been integrated into the Rethink Mental Illness website so that they can be found easily and remain hosted once project funding ends, our sibling support groups will continue to run and will be managed by the Rethink Mental Illness groups management team and there will continue to be a siblings forum within the mental health forum RethinkTalk. This means online information and some local support will continue to be available to siblings.

heard anyone else express the feelings, fears and experiences I have had. It was a massive shock to my system and I wept for a long time. I’ve looked at your website, the blogs, comments and information there and am so grateful it’s there. I’ve become a member, but if I can help in any other way I would be very happy to do so [...] And to the Big Lottery for funding you, I say THANK YOU too.”

Our 2012 consultation on continuing the project

We led a consultation in September 2012 around if there is a need to gain continuation funding from the Big Lottery Fund for the project and what this next phase of the project would include if so. We have had positive responses from those involved in the consultation, which included siblings, parents, people affected by mental illness and professionals who see promise in how we could develop the network and our offering and hope that we can continue the Siblings Network.

The consultation included eight indepth telephone interviews, conversations with health professionals, focus groups and an online survey which was completed by siblings (130), those with direct experience of mental illness (194), parents of those affected by mental illness (29) and health professionals (71).

The responses highlighted the positive impact of sibling support can have on all of these groups.

The future of the network

However, while the project has gained momentum, reaching out to siblings, their families and professionals, there still remains a long way to go until siblings are fully recognised for their role within the family along with their personal needs for information and support and this is important in making sure they make the step to access our service provision. By continuing the Siblings Network project, we would be able to work on the project learnings to build a new phase of work to better reach siblings and their families. We want to develop on the local support that we have available and the learning opportunities that have been funded by the project and that have a high impact on delivering outcomes. We could further develop more of the ideas from siblings in the network which have been integral in designing the project’s output and continue to establish what the project has begun in creating a ‘sibling identity’.

Funding for this project is from July 2010 – June 2013. For our evaluation report which forms part of our evidence for this report, we have used data from the Siblings Network project up until December 2012 . Since this time we have held further workshops and events which have had very positive feedback.

“I cannot tell you how much finding out about your Siblings project has meant to me. I’m 49 years old and my brother (48) has suffered with long term anxiety and depression since his late teens, early 20s. We are very close, but because of his illness, I can barely remember a happy, stress free time with him in the last 30 years. I alternate between worry, anger, resignation and determination to continue to support him. After all these years am exhausted. Listening to the piece of All in the Mind was the first time I’d ever


When asked if there is a need for sibling-specific support and information, 80% of people affected by mental illness, 89% of professionals, 95% of parents and 90% of the siblings who took part and who had not already accessed the Siblings Network said yes. In addition 77% of siblings would like this to include local support.

This was the first time we had formally consulted with people affected by mental illness and parents on the project, and it provided an extra understanding of the impact the project has on these groups. For people affected by mental illness they said the biggest challenges for the family as a whole were: difficulties discussing mental illness within the family (72%), communication difficulties within the family (64%), lack of practical information on how to cope with mental illness and support one another (58%), lack of emotional support for family members (56%) and the stigma we face from others around mental illness (52%), areas which the Siblings Network seeks to address.

100% of the professionals who took part thought it was important to involve siblings by providing them with information and support while only 27% thought it was generally easy to contact siblings to provide them with this. This is why we would like to build an emphasis on engaging with professionals

around the importance of involving siblings in the next phase of the Siblings Network project and giving them advice on how to do this. It is clear that professionals can see the value in this. Also, in a time of cuts, professionals noted that family support was becoming more important. Further, there is a better understanding in mental health services of the importance of a whole family approach to care and we believe this should include siblings, where we know in most cases it does not.

The siblings involved in the project are keen that it continues as is Rethink Mental Illness who see this project as an important and unique part of what they can offer to families affected by mental illness.

This consultation shows that there is as strong a need as ever for the Siblings Network project. It also shows there would be real value in building on our learnings and the community which we have built over the last three years with the support of the Big Lottery Fund.

We hope to gain funding to firmly establish local sibling support within which siblings can gain support, further build the idea of a ‘sibling’ identity and engage siblings who we have been unable to reach through our current model. Rethink Mental Illness and the siblings we work with have exciting plans for the future and we look forward to having the opportunity to build on this innovative programme of work.


Our analysis has shown that we have successfully achieved our project aims and objectives. Through our project evaluation and review process as described in this report, we have identified key areas where we feel the project has had a particular impact. They are as follows:

when their family needs help. There were statements in the qualitative responses from the conference, workshops, online survey and support group focus group describing how people had benefited from accessing information, support and advice. People stated that they had felt more positive about their sibling’s illness, and that they gained insight, knowledge and an awareness of mental illness and mental health research. People described how they valued this information and how they had applied it in support of their brother or sister.

The workshops were reported as facilitating acquisition of insight into sibling’s experience of mental illness and that they provided practical information such as information on future planning, appointeeship and developing strategies and a pseudo care plan.

Siblings are provided with tools to support their brother or sister in their recovery

Evidence that the project is providing tools to enable siblings to support their brother or sister is demonstrated by the online survey which showed that 51% of people reported that they learned practical ways in which to support their sibling, 51% gained confidence in coping with issues that they and their family face, and 37% learned ways to take action to get the support that they and their family needed.

Conference and workshop feedback was highly positive in relation to providing tools to support their brother or sister in their recovery; for example, 86% of conference attendees and 92% of workshop attendees strongly agreed or agreed that they gained tools and tips that they could use to support their sibling.

Conclusion

Siblings are better informed about how they can look after their own wellbeing

Evidence showed that the project effectively provides information and tips to siblings on how to better look after their own wellbeing. The results of the online survey showed that the majority of people responding (73%) have learned more about the issues that they face as a sibling. The survey also showed that the majority learned ways of coping with emotions that they face as a sibling (63%), learned how to get support for themselves (68%) and picked up skills from hearing about how others coped (64%).

The qualitative data provided examples of how people became better informed through information on the Siblings Network website, learning from the experiences of others (via forums, support groups, workshops and the conference), conference presentations, workshops, and through being inspired to follow up on links to further information.

Conference and workshop feedback was highly positive in relation to information gained to benefit siblings’ wellbeing; for example, 85% of conference attendees and 84% of workshop attendees strongly agreed or agreed that they had increased ability to cope with issues and emotions that they face as a sibling.

Siblings are better informed about how they can support their brother or sister

Evidence from our review process has suggested the project is helping ensure siblings are better informed about how to support their brother or sister with experience of mental illness. Statistics from the online survey show that the majority of people responding (53%) learned ways that they can support their sibling and that 46% of responders felt that they had learned more about the people that they can contact


There were statements in the qualitative responses from the conference, workshop, online survey and support group focus group describing how people had gained tools (knowledge, skills, and insight) which they could apply to benefit the recovery of their sibling with experience of mental illness. For example the support group helped build people’s practical resources and psychological resilience through sharing information, links to services and resources.

A sense of sibling identity is established

The project sought to establish a sibling identity. This included a personal sense of identity for siblings themselves from which they could view and address their experiences. It also included establishing an identity with families affected by mental illness and professionals who work in the field of mental health. The Siblings Network established that siblings are a group with specific needs that need to be met. It also promoted wider recognition of the importance of siblings own health and wellbeing and the role they play in supporting the health and wellbeing of their sibling with experience of mental illness.

By promoting and advertising the project to a wide variety of groups which includes siblings, families affected by mental illness and professionals, the Siblings Network has raised awareness of the valuable role siblings play in the lives of their brothers and sisters experiencing mental illness and the needs of siblings themselves. Our evaluation of the project showed that siblings believe the project has achieved increased recognition for siblings and that they value this recognition.

The qualitative responses from the conference, online survey, workshops for Sibling Network members, and support group focus group indicates that siblings who have accessed the Sibling Network’s resources and activities feel a sense of sibling identity. People have reported that they feel that they are not alone in their experiences, that they are better able to define and validate their identity, and have a shared sense of identity as a result of finding the network. One person responding to the online survey stated that: “…this network and support has given me my sense of identity back.”

Reaching the siblings of people affected by mental health has been a significant challenge as there hasn’t been a project like this before and they are often “asked and included the least” by mental health services (Siblings Network survey 2011). They often find the project while looking for other things, for instance information on mental health and how to support their sibling, and come across a provision directly for them this way. We therefore feel there is a significant journey still to travel in terms of establishing a sibling identity. That is, to ensure that among professionals the distinct needs of siblings are recognised and responded to, and that those who have a brother or sister affected by a mental illness recognise their own needs as a sibling.

However, when siblings find the network, the response is overwhelmingly positive. Many older siblings report that they wish the Siblings Network had been available for them sooner, say 20 years before when their sibling first became unwell.One sibling stated that the network: “Provided a support structure for me to think about what it means to be a sibling.” Enabling people to understand what it means to be a sibling of someone with experience of mental illness can allow people to define their own information and support needs and see the value in the support that they provide for their sibling with experience of mental illness, empowering them in their role as a sibling.

Siblings feel part of a community

A key aspect of the success of the project is that it has effectively developed a community for siblings. The website is generating a high number of visits and return visits (the same people visiting the site more than once). People are making use of the forums, downloading factsheets, reading and sharing blogs and watching the videos. The website can be considered to be a virtual community for siblings that facilitates access to physical communities created by the project such as the support groups. The value of this community was demonstrated through the feedback from the website. This feedback described how forums, support groups, the conference and workshops have allowed people to share experiences, feel that they are not alone, feel freed from silence about ‘sibling’ issues, reduce feelings of isolation and connect with, relate to, and share with other siblings.


The Siblings Network support groups are a key part of creating a sibling community. They offer a regular point to meet up with other siblings and obtain support from others in the group. The support groups offer a safe environment where people feel that they are able to open up, share with others, bring questions and issues and contribute to answering the questions and issues of others, be listened to, express feelings and talk about issues that they are not able to do elsewhere. People found that this community allowed them to feel and express that “it is OK not to be OK” and that they are able to ask for advice and that it will be freely given.

The conference and the workshops for Sibling Network members are also a key part in building a sense of sibling community. The conference survey feedback showed that 98% of people reported benefiting from meeting others at the event and the Sibling Network workshops feedback showed that 100% of people reported benefiting from meeting others at the workshops. The recorded interviews at the conference and comments from the workshops showed that siblings enjoyed and gained from the opportunity to meet and share with others, that it helped them to understand others were having similar experiences to them and that it enabled them to connect with other siblings.

Who we are reaching? Demographics analysis

Siblings have benefited greatly from the resources and activities provided by the Siblings Network. The goal of the project was to target siblings in general; however, there have been some groups that have drawn on the resources to a greater extent than others. For example our analysis suggested that more women that men engaged with the network across all activities. Furthermore we had a lack of engagement from young siblings and those aged 60 and over and this paper explored possible reasons and possible approaches that could be taken in the future to secure broader engagement.

THE IMPACT OF THE PROJECT

The impacts of the Siblings Network as we found through our evaluation report included:

• Building resources and resilience.

• Having support when you need it.

• Advantages of shared experience.

• Encourages siblings to take action to get support for themselves and their families.

• Creates a feeling that ‘you are not alone’.

• Faciltiates sharing of knowledge and experiences.

• Enables an emotional connection to material aiding information retention.

• Providing information for siblings at different stages which they can use as and when required.

• Gives a view of the future and a feeling of hope.

• Encourages siblings to look after their own wellbeing, while siblings are at a higher risk of developing mental illness themselves.

Overall the network has met its aims and objectives and done much more besides. Through the project we gained significant insight into the needs of siblings and how these can be met. We believe that through the creation of a network and community, the project has improved the lives of people affected by mental illness and their siblings.

Find out more about the Siblings Network at www.rethink.org/siblings


– We have 250 services which help people live independently, make the most of their lives, make their voice heard, cope in a crisis without hospital and find out about their rights. We may have a service near you, go to www.rethink.org/services to find out.

– We have 150 support groups where people can share experiences and find understanding. We may have one near you. Go to www.rethink.org/groups to find out.

– We campaign to improve people’s rights to care and put an end to stigma and discrimination. www.rethink.org/campaigns

– We have a network of thousands of members who feel part of a movement to improve the lives of people affected by mental illness. Join us today www.rethink.org/join

– We provide reliable information on topics from medication to housing rights. Go to our website www.rethink.org/information or call 0300 5000 927.

– We have specialist advisors who help with benefit problems, debt, access to services, medication and rights under the Mental Health Act. Call 0300 5000 927, Monday to Friday, 10am to 1pm or email [email protected]

– Join our online community ‘Rethink Talk’, where people connect to others with similar experiences www.rethink.org/talk

– We train teachers, the police, and everyone who needs to understand mental illness better. Call 0300 5000 927 to find out more.

– Our research gives new perspectives on mental illness and improves the evidence base. Visit www.rethink.org/research

Rethink Mental Illness is a partner in:

Rethink Mental Illness is a charity that believes a better life is possible for millions of people affected by mental illness. For 40 years we have brought people together to support each other. We run services and support groups across England that change people’s lives and we challenge attitudes about mental illness.


Registered in England Number 1227970. Registered Charity Number 271028. Registered Office 89 Albert Embankment, London, SE1 7TP. Rethink Mental Illness is the operating name of National Schizophrenia Fellowship, a company limited by guarantee. © Rethink Mental Illness 2013.

Leading the way to a betterquality of life for everyoneaffected by severe mental illness.

For further informationon Rethink Mental IllnessPhone 0300 5000 927Email [email protected]

www.rethink.orgA Big Lottery Funded project from July 2010 to June 2013.

evaluating the siblings network

Documents