Family and friends inclusive practice handbook | Headspace, Study notes of Innovation

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Family and friends

inclusive practice

handbook

Contents

• Foreword
• Introduction
• Why engage with family and friends?
• headspace position statements
• Family and friends inclusive practice
• Understanding the family dynamic
• Engaging family and friends in treatment
• Barriers to engaging family and friends
• Overcoming the barriers:
  • Talking to young people
  • Talking to family and friends
• Confidentiality
• Engaging and inclusive services
• Barriers and enablers to creating engaging and inclusive services
• Workforce training and education
• Resources
• Community awareness
• Further information and resources
• Acknowledgements
• headspace Family and Friends inclusive practice handbook –

Introduction

This handbook supports

headspace staff to work in

a sensitive and inclusive

manner in relation to family

and friends in the context

of a young person’s care.

It also provides guidance for

how to promote a welcoming

environment for the family

and friends of young

people, and how to facilitate

opportunities for family

and friends to participate

in service development

and improvement.

Our aim is to provide a simple guide that will prompt, support, encourage and embed family and friends inclusive practice at all levels of headspace in a form that is appropriate for each young person. headspace uses the term ‘family and friends’ rather than ‘carers’. This is in response to advice from its National Family and Friends Advisory Committee. headspace believes the use of this term encourages all people involved in a caring role to engage with the service and seek advice and support. The support networks of young people vary across stages of development and may also vary by social and cultural background. There are many different types and configurations of family and friends, including: all types of families (nuclear, extended, blended, single-parent, heterosexual and same-sex couples); non-parental care-givers (partners, foster-parents, grandparents, god-parents, adoptive parents, other family members); and significant others (friends, teachers, mentors). In maintaining a broad definition for the family and friends involved in a young person’s care, headspace is committed to an inclusive approach which recognises that the boundaries for describing those important in a person’s life are varied and flexible. The development of this handbook was a collaborative effort. The quotations featured throughout the document were written by Jess, one of the many youth advisors to headspace , and draw on her direct experience. Her contribution is reflective of the commitment of headspace to engaging with young people at all levels of service delivery to ensure that we remain youth friendly and youth focused. The hope is that this guide will inspire headspace centres and programs to engage with the family and friends of young people seeking support and by doing so, promote the best possible recovery outcomes for young people.

Young people between 12 and 25 years of age tend to be living with family members, and if they experience significant mental health difficulties it is often their family members who become their primary carers. Even when young people are living away from home they can still have significant contact with their families, and may continue to rely on them for support and guidance. Data from Mission Australia’s Youth Survey 2013 indicates that young people rely significantly on their family and friends for advice, with 68% reporting they seek advice from friends, 60% from parents and 51.6% from relatives and family friends^1. Young people are most likely to talk to family or friends as the first step in help-seeking^2 , and family and friends are often the first to notice a change in a young person’s emotions or behaviour that may signal the onset of a mental health or substance use problem. They also frequently encourage the young person to seek help or attempt to access help on their behalf. headspace data show that almost half of young people are most influenced by their family or friends to attend headspace , primarily family^3. We know from research that involvement of family and friends in a young person’s mental health treatment can contribute to reducing the incidence of relapse, improving adherence to treatment, improving family functioning, increasing periods of wellness, and improving the young person’s quality of life and social adjustment^4. Engaging with the family and friends of young people acknowledges the important role that these people play in the young person’s life. It also ensures that family and friends are sufficiently supported themselves to care for the young person, and that the support they provide is consistent with that of the young person’s treating team.

(^1) Mission Australia. Mission Australia Youth Survey 2013. Accessible at www.missionaustralia.com.au (^2) Rickwood, D.J., Deane, F.P., & Wilson, C. When and how do young people seek professional help for mental health problems? Medical Journal of Australia, 2007. 187(7): p. S35–39. (^3) headspace centre client data April 2013 – March 2014, main influence at first visit to centre (^4) Pitschel-Walz, G., Leucht, S., Bauml, J., Kissling, W., & Engel, R. R. The effect of family interventions on relapse and rehospitalisation in schizophrenia – a meta-analysis. Schizophrenia Bulletin, 2001. 27(1): 73-92.

At times I have felt really fearful and

ashamed of telling my family and friends

what I’m really feeling. If I had had the

courage to ask my parents for help, or if they

had known about the services and support

that headspace could provide to both of us

as a family, I feel that my struggle with

mental illness would have been easier for

them, and less isolating. I feel they would

have been better able to support me, and

wouldn’t have felt so frustrated and alone.

It’s so important for family and friends to feel

welcome to share in the recovery journey of

a young person they care so much for, from

a service delivery perspective!

• Families and friends can play an important role in supporting a young person’s recovery as they possess valuable knowledge and resources that will assist in the treatment of the young person. It is imperative that mental health services acknowledge and respect the contributions of family and friends.
• There are benefits to working with family and friends for the young person, the family and friends, and the practitioners. Involving family and friends allows the practitioner to see the issues from a number of perspectives and to gain more complete information.
• Family and friends are often dealing with a range of concerns and information in the early stages of a young person’s mental health and/or substance use problem. It is important that family and friends are supported to care for their own wellbeing, as well as caring for the young person. Family and friends need to be treated with dignity and respect and to feel included in the treatment of the young person. They need to be provided with information that is useful, practical, and supportive, and be referred to support services where appropriate.
• Clinicians and services need to establish consensus and prior agreement concerning the extent to which information is to be shared with family and friends at the beginning of contact with the young person, and revisit and review this agreement on a regular basis. Where appropriate, clinicians should actively encourage the involvement of family and friends.
• The ability of families and friends to be supportive is influenced by a number of factors including: cultural understandings of mental health and wellbeing; level of family stress; normal family worries and pressures; and the health and wellbeing of family and friends. The actions of the family should be seen as their best efforts to manage the situation within the limits of their resources.
• Practitioners should aim to support and strengthen the relationships between the young person and their family, and where this is not achievable within the service, refer family members to services that can offer further assistance.
• Active listening is the basis for effective communication and engagement with family and friends. It is important to consider each person’s perspective on the issues presented for discussion. A strengths-based approach that is collaborative and non-blaming should be used, rather than focusing on the problems and risk factors associated with the young person and their family and friends. A collaborative, non-blaming approach should be adopted.
• Clinicians and services should, where appropriate, actively collaborate with families and friends in the care of the young person, including involving them in developing and implementing care/treatment plans.

headspace position statements –

family and friends

Page 6

Understanding the family

dynamic

Understanding the configuration and dynamics of the family and network of supports around a young person helps to contextualise their relational experience and their behaviour, and provides a fuller understanding of their presentation. Any work with a young person should therefore include an assessment of the young person’s family of origin, family and developmental history, past and current living situations, intimate relationships and other significant relationships including their friends, teachers or mentors. This information does not have to be collected in one session, however, or at the first point of contact. It may be more appropriate to build up a picture of a young person’s family over time, as they become familiar with their treating team and feel more comfortable sharing information.

The support networks of young people are varied and will differ across cultures and at different stages of development. While for many young people, their primary supports will consist of their family and significant others with whom they live, this should not be assumed as holding true for all young people. Adopting a position of respectful curiosity, listening to how the young person describes their relationships with family and friends, and constructing a genogram in collaboration with the young person can be helpful strategies in building a good understanding of their family and support network.

Page 8

Page 7

You want your parents to be proud of you,

and you don’t want to cause them more

stress than they are already experiencing.

There’s always the fear of them becoming

angry, or upset. I remember seeing my

mum cry and that really hurt me, I felt so

responsible for her suffering. If headspace

could support parents to feel less alone,

supported and informed of what they can

effectively do to help when their teenager or

young person is going through a rough time,

I feel that would be an incredible gift

to parents and friends everywhere!

Page 9

For young people For family and friends For clinicians

Desire for privacy Fears of being blamed for the young person’s problem

Feeling unsure or under-skilled in working with families/friends

Concerns about getting in trouble, disappointing or burdening family/friends

Geographic distance from the service

Regarding work with family/friends as being outside their role

Stigma around the disclosure of mental health difficulties

Time constraints, inflexible work hours

Time and resource constraints

Conflictual family relationships

Frustration with the young person, feeling overwhelmed

Fears of being overburdened by requests and information

Fears that others won’t understand or will be dismissive of their difficulties

Stigma surrounding mental illness and mental health services

Inflexible funding sources

Lack of knowledge of family support services

Negative community perceptions of mental illness -perpetuated by stigmatising language and labelling in the media

Concerns about breaching confidentiality

Lack of knowledge of family support services

Assumption that young person doesn’t want to involve their family or friends

Belief that family is to blame or is perpetuating the problem

Barriers to engaging family and friends

Overcoming the barriers –

Talking to young people

Finding ways to talk to young people about having their family and friends involved in their treatment is important in helping to break down some of the barriers that exist, both from the perspective of the young person and clinicians themselves.

The following tips may be helpful in talking to young people about involving their family and friends:

• Encourage young people to think about what it might be like to have their family or friends involved in treatment, and what the benefits might be
• Validate the fears that a young person might have around talking to their family and friends about their mental health difficulties, and discuss ways they might start a conversation about it
• Normalise the experience of the young person – it is very common for family and friends (particularly parents) and young people to see things very differently and not to get along at times, usually due to different understandings of problems – this may be improved with more open communication
• Provide reassurance that in most situations family and friends prefer to know what is going on for the young person so they can provide appropriate support and care – if they’re not aware of what’s going on then it’s difficult for them to know what is needed
• Establish consensus and prior agreement from the start of work with the young person as to what information is to be shared with family and friends, and revisit and review this agreement on a regular basis.

I had no idea how hard it was for my best

friend. She could see how I was hurting, but

didn’t feel equipped to have a conversation

with me about it. She felt it was not her place

and was worried she would upset me, or

make me angry. Friends of young people

struggling with a mental health issue need

to know that headspace can support them

to have these challenging conversations.

They need to know that headspace is there

to support them as much as they are there

to support their friend. Friends need to know

that it’s not their fault, and that it isn’t pushy

or controlling to want to help someone you

care for.

Recording: Make clear notes in the young person’s file about the types of information they have and have not consented to sharing with family and friends. This is important in terms of ensuring the young person’s wishes are followed and maintaining their trust Transparency: Encourage family and friends to talk with the young person openly about the information they’d like to know and the contact they’re having with the treating team. It’s preferable that young people and their family and friends are able to communicate about these things, even if it’s difficult or if they have differences of opinion. Be clear from the outset with young people about the limits of confidentiality and the situations where information may need to be provided to others.

Confidentiality

Confidentiality is an important issue for a number of reasons, including the need for staff to uphold service commitments, the legal rights of a young person to privacy, the desire of those supporting the young person for information, and the relationship between maintaining confidentiality and gaining the trust of young people. headspace staff must also operate within the legal and professional frameworks that exist both nationally and at the relevant state level.

headspace provides a confidential service with clear exceptions around risk, however this should not lead to an assumption that in the absence of risk family and friends will not benefit from being informed of or involved in a young person’s treatment. Fears around breaching confidentiality should also not prevent staff members from encouraging the involvement of family and friends where appropriate. Our approach needs to consider the needs of young people to privacy, their need for support and protection at times by their family and friends, and the responsibilities of families given the age and developmental stage of the young person.

Some important work practices around confidentiality include:

Consent: A young person should be explicitly asked at the earliest appropriate opportunity about whether they give consent for family or friends to be provided with information about their treatment, and a discussion had about the types of information they are happy or not happy to have shared. Partial consent is still useful and may be appropriate depending on the young person’s age.

Information giving: If family or friends contact about a young person, information should not be given without getting consent in advance.

My dad didn’t want to know all the ins

and outs of what was going on for me,

he simply wanted to know more about

what I was experiencing, from a clinician’s

perspective, so as he could best support me

on the road to wellness. He often reflected

that he would have loved to have chewed

the ear of a clinician, not to pry or invade

my privacy, but to equip himself with the

skills and tools that would empower him

to best support me. He wanted factual,

straightforward information about my

condition, so he didn’t feel useless or in the

dark. He wanted to entrust me to find my

own truth, as he could see how important

this was for me as a young adult. Looking

back though, he did feel isolated because

he simply didn’t know where to look or who

to talk to for helpful, informative advice.

Even when a young person has stated their wish that information should not be disclosed to their family or friend, there are still ways of engaging and supporting their family and friends.

The following responses may be helpful when talking to family and friends:

• What sort of things would be helpful for you to know? I can speak about this but not that.
• I can’t talk to you at this time, but there are support services and groups that you might find helpful.
• I can’t talk about your relative specifically, but we can talk about mental health issues generally. For example, we could talk about why people might have strange ideas or behaviours.
• We can’t talk about confidential stuff but we can talk about some strategies for how to manage difficult situations or behaviours.
• Have you read things about mental illness that you don’t understand? Perhaps I could help to explain anything that is confusing or unclear.
• Would it be helpful to have some resources or materials that provide information about young people’s mental health or the experiences of families and friends who support young people?

Creating services that are welcoming and engaging for family and friends requires thoughtfulness about a range of factors, including the environment, the attitudes of staff, workplace culture, language, and the processes that either facilitate or create barriers to family and friend involvement. Opportunities for family and friends to participate meaningfully in service development and improvement is also integral to ensuring that services are engaging and appropriate, and reflects the value that headspace places on the knowledge and experience of family and friends.

Barriers Enablers

Negative attitudes held by staff Shared understanding by all staff that family and friends are welcome and their attendance encouraged

Lack of acknowledgement of family members or friends, and the role they play

Respectful attitudes towards family and friends

Lack of visible resources Visible resources targeting family and friends

Lack of knowledge by staff of support or referral options for family and friends

Clearly articulated policies around issues of confidentiality

Lack of opportunities for feedback from family and friends regarding the experience of services

Community awareness and health promotion activities targeted towards family and friends

Opportunities for family and friends participation in service development and quality improvement activities

Barriers and enablers to creating engaging

and inclusive services

Workforce training and education

Training for all staff across headspace programs about the importance of family and friend inclusive practice and the ways to help facilitate and support their involvement is vital in creating a culture and environment which is engaging for family and friends. It also provides the support for headspace staff to overcome their fears and uncertainties in relation to working with family and friends so they can fully implement headspace policies and values.

While some clinicians may be sufficiently trained to provide formal family therapy, this level of training is not necessary in order to behave or practice in a family and friend inclusive way. Rather, training provided by centres and headspace National Office should be focused on the core skills needed to provide support to and engage family and friends in treatment, including:

• strategies for engaging family and friends
• assessment of a young person’s home and environment, including construction of a genogram
• provision of psycho-education
• knowledge of self-care strategies
• knowledge of referral pathways and available community services and supports
• knowledge of rights and responsibilities of family and friends, and policies and procedures around confidentiality.

Training and education can be delivered in a number of ways and incorporate innovative strategies, including face-to-face training sessions and workshops, webinars and other online formats, or via written manuals and guidelines. Training that incorporates the perspectives of those with an experience of supporting a young person with mental health difficulties is particularly beneficial and helps to ensure the appropriateness and credibility of the content.

Once a young person has recovered from

a mental illness and their parents and

friends see the change in them, more

often than not they are inspired to give

back to the service that supported them

to be well. In terms of facilitating

opportunities for involving family and

friends in shaping service delivery and

improvement, a committee or group of

family and friends that was willing to

provide useful feedback on how to best

engage and support them whilst their

young person is seeking help would be

hugely beneficial! We can only know what

family and friends want and need from

headspace if we are willing to ask them.