Presented by Catherine, Karena, Karina, Yanbing & Wendan

Family & Carers in Mental Health Care

Content• Introduction• Definition of Key Terms • Australian Epidemiological Data• Challenges & Issues for Families & Carers• Benefits of Families &Carers• The Role of the Mental Health Nurse/s (Vivian)• Contributions of the Multidisciplinary Team (Vivian/Karena)• Working with Families: What Nurses Need to Know (Vivian)• Major Approaches to Treatment (Vivian)• Resources available for Families & Carers• Concluding Video• Amy's Story• Sheila’s Story• Fact Sheet• References

"By its very nature, mental illness can be understood as a familial experience. Although an individual may have symptoms of mental

illness and receive treatment for them, due to the interconnected nature of families this can

affect every member of the family”

(Kinsella, Anderson & Anderson (1996)

Definition of Key Terms• Mental disorder - a clinically significant behavioural or

psychological syndrome or pattern that occurs in an individual and that is associated with present distress (e.g. a painful symptom) or disability (i.e. impairment in one or more important areas of functioning) or with a significantly increased risk of suffering death, pain, disability, or an important loss of freedom.

• Consumers - is a person who is obtaining treatment or support for a mental disorder, also known as psychiatric or mental illness.

(DSM-IV-TR (4th version))

• Carer - a person who provides significant paid or unpaid care and support to a person with a mental health issue and may or may not be regarded as family; Someone who cares for a relative or friend, who has a disability, an illness or a mental health problem, and provides substantial care on a regular basis.

• Families - A family is two or more people who regard themselves as a family and who perform some of the functions that families typically perform; Parents will often see themselves as parents rather than carers. If their child has additional care needs they may be entitled to additional services.

• The ‘burden’ on carers - the stress family members experience when supporting someone with severe mental health problems; impacts have been assessed in terms of the psycho-social aspects of carers’ physical and mental health, as well as their employment, financial & general quality of life;

• Respite care - the provision of short-term, temporary relief to those who are caring for family members who might otherwise require permanent placement in a facility outside the home. - formal & informal services that provides a ‘short-break’ and is used to describe both the service provided and the outcome for carers.

Australian Epidemiological Data

• Top long-term health conditions experienced in Australia in 2011-12 1. arthritis - 3.3 million people (14.8%) 2. mental and behavioural conditions - 3.0 million people

(13.6%) 3. asthma - 2.3 million people (10.2%) 4. heart disease - 1.0 million people (4.7%)

• 13.6% is an from 11.2% in 2007-08 and 9.6% in 2001.

(Australian Bureau of Statistics 2013)

There are 2.6 million carers in Australia who provide unpaid care and support to family members & friends who have a disability, mental illness, chronic condition, terminal illness, drug or alcohol issues or who are frail aged.

More than 300,000 of Australia's carers are young carers, up to 25 years of age, with 150,000 under 18.The person they care for may be a parent, partner, sibling, their own child, relative or friend.

(ABS 2009; Carers Australia Strategic Plan 2012-2015; SDAC report)

Australian Epidemiological Data

• over 1.5 million carers are of working age (18-64) • 31,600 Indigenous carers are over the age of 15 • 620,000 carers were born outside Australia • 366,700 carers were born in non-English speaking

countries

• 520,000 carers are over 65 years of age

(ABS 2008; ABS 2009; Mental Health Council of Australia and Carers Association of Australia 2000)

Australian Epidemiological Data

• The estimated annual replacement value of care provided in 2012 is over $40.9 billion

• Unpaid carers (families & significant others) for a person experiencing a mental illness have been estimated to spend an average of 104 hours per week in this activity.

• Carers save the NSW Government $5.4 billion every year (2005).

• It is estimated that carers provided 1.32 billion hours of unpaid care (2010). (ABS 2008; ABS 2009; Mental Health Council of

Australia and Carers Association of Australia 2000)

Australian Epidemiological Data

Figure 1: health professionals listening to carer concerns

Figure 2: Availability of services for carers

Figure 3: Financial costs for carers

Figure 4: Physical and mental health of carers

Challenges and issues for carers

• The focus of health professionals and carers in the experience of mental health illness is often centred on the consumer’s health (Mental Health Council of Australia 2012).

• Carers are also significantly affected by the mental health illness of their close one and experience various effects relevant to their own health such as feelings of isolation and the deterioration of their mental and physical health due to their caring role (MHCA 2012).

• In the 2012 Mental Health Carers Report, it was shown that 71% of carers reported a deterioration of their health in the period of 12 months as a direct result of caring for someone with a mental illness.

• The challenges and needs of carers needs to be addressed because they can undermine the capacity of the carer to care for others (Lakeman 2008).

Point for discussion:

Can you think of some issues that may be experienced by carers relevant to their role as a carer?

Challenges or issues for carers

Physical health issues

(MHCA 2012, Tuffrey 2012)

Low energy levels.

Feeling tired, unwell or rundown.

Carers undertake physically demanding tasks.

Possible physical injury from tasks such as heavy lifting.

Emotional and mental health impacts

(MHCA 2012, Gray, Robinson & Sedon 2008; Tuffrey 2012;)

Fear for your family member and what the future holds.

Mixed feelings and difficulty to process the mental illness emotionally.

Feelings of anxiety, depression, negative behaviour as well as loss, grief and blame.

Embarrassment about home life.

Employment and financial issues

(MHCA 2012)

Being a mental health carer may severely limit employment options.

Inability to work results in heavy financial constrictions within the family.

Effects on relationships within the household

(MCHA 2012; Tuffrey 2012)

Strained relationships.

Family conflict.

Difficulties in participating in “fun” family activities due to increased care responsibilities..

Point for discussion:

Young carers are a particularly vulnerable group.

• Do you agree or disagree?

• Can you provide reasons for your stance?

Young carers• Young cares may experience changes in physical or mental

health as a direct consequence of their caring role. In the 2012 Mental Health Report, nearly half of young carers (42%) indicated that it had become worse.

• Around half (54%) believed that being a young carer resulted in missed opportunities in doing things that they enjoy because of time dedicated to their caring role (MHCA 2012).

Challenges specific to young carers

Role reversal and loss of opportunity to have a ‘normal’ childhood

(Tuffrey 2012)

If a child is caring for a person with a mental illness, they instantly become responsible for them and roles in the family are reversed.

Within this view the mentally ill parent is constructed as dependent upon their child and the child is forced (due to lack of social work intervention and family dynamics) to care for their parent.

In turn, there can be a loss of opportunities to engage in ‘normal’ activities of young people such as socializing and participating in school.

Effects on social participation and relationships with peers

(Gray, Robinson & Sedon 2008)

Associative stigma of being a carer.

Restrictions in leisure time, and time to interact with peers.

Social and peer-group isolation.

Severely restricted opportunities for developing consistent peer friendships.

Education and employment issues

(Gray, Robinson & Sedon 2008)

Restricted opportunities for education

Disadvantaged in terms of employment prospects.

BenefitsCarer involvement can result in:

• Improved carer and family wellbeing.

• Reduced carer stress.

• Improved understanding of mental illness, treatments and services.

• Increased compassion for and understanding of people with a mental health illness.

• Increased closeness to the family.

• For young carers in particular: sense of achievement from taking on more adult roles.

(State Government of Victoria 2006; Tuffrey 2012).

Addressing the needs of the carer

• Benefits should not be hindered by issues that are detrimental to the health of the carer and undermine their capacity as a carer.

• The Mental Health Council of Australia 2012 has outlined the necessity of addressing the continuing physical and mental health needs of carers by increasing awareness of existing support services.

Supporting families and carers

• Consider their own mental health and wellbeing• Benefits all consumers involved enhances service delivery• Decreases hospital admissions• Reduces relapse rates• Priority areas:

– Recognising, respecting and valuing carers– Identifying and supporting hidden carers– Improving services for carers and the people under their care– Ensuring that carers are partners in care– Supporting carers to allow them to combine caring and work

(ARAFMI 2013c; NSW Health 2013)

ARAFMI• Association of Relatives and Friends of the Mentally Ill• Formed in Sydney, 1975• Primary provider of services for carers

– Carer Telephone Helplines– Carer Counselling– Advocacy workers– Support and Education Groups– E.g. Restore – Family Support Program

• Works in formal partnerships with Area Mental Health Services and other NGOs

(ARAFMI 2013a; ARAFMI 2013b)

Government supporting Carers

• National Carer Recognition Framework consists of:- National Carer Strategy 2011 – 2014- Carer Recognition Act 2010

“The National Carer Strategy 2011 – 2014 strengthens our commitment to recognise and respond to the needs of carers so that they have rights, choices, opportunities and capability to participate

in economic, social and community life”.

(Department of Families, Housing, Community Services and Indigenous Affairs 2013)

Carers Recognition Act• The objectives of this Act are:

– (a) to enact a Carers Charter to recognise the role and contribution of carers to our community and to the people they care for, and

– (b) to increase the awareness of the valuable contribution that carers make to our community.

”A human service agency must take all reasonable steps to ensure that the agency, and the members of staff and

agents of the agency, take action to reflect the principles of the NSW Carers Charter”

Carers (Recognition) Act 2010.

Family and Carer Mental Health Program

• Family Friendly Mental Health Services– Focus on supporting local service improvements– Enhance skills of mental health service staff– Local workforce training and development– Develop structures to allow families and carers to

influence service delivery– Provide information and access to education and

services– Recognise needs and values

(NSW Health 2013)

Family and Carer Mental Health Program

• Mental Health Family and Carer Support Programs– Funding of direct support services through NGOs– Education and training packages; mental illness

management, coping skills, resilience– Support and information during early stages of

diagnosis and treatment– Help to establish peer support groups

(NSW Health 2013)

Family management training

• Outcomes of education and support:– More able to cope with hardship– Change family attitudes and behaviours– Significantly reduced risk of consumer relapse

• Well Ways– Provides practical information about mental illness– Supports participants to develop effective strategies

for caring for their family and themselves

(Carer Assist 2008; Falloon et al. 1981)

Well Ways• Phase 1 – Engagement Phase: establish

rapport, assessing and addressing needs, suitability

• Phase 2 – Development Phase: eight sessions, peer delivered, increase knowledge, develop social networks, problem solving skills

• Phase 3 – Consolidation Phase: further develop participants’ skills, social contact encouraged

(Carer Assist 2008)

Carers’ Allowance• Provided by Centrelink (Dep of Human Services)– $115.40 per fortnight

• Caring for a person 16 years or over– Has a disability or medical condition– Needs additional care and attention on a daily basis

• Following conditions diagnosed by a psychiatrist using the current DSM-IV– Child Disintegrative Disorder– Major depression of childhood– Childhood schizophrenia

(Department of Human Services 2013; Department of Families, Housing, Community Services and Indigenous Affairs 2012)

Mental Health Carer Respite

• Funded by the Australian Government under the Mental Health Respite Program

• $54.3 million for five years to 30 June 2016• Priority is given to people who care for a person with a

severe mental illness• Provided by many organisations in each state

– Mental Illness Fellowship South Australia– Catholic Community Services NSW/ACT– The Disability Trust– Catholic Community Service– Uniting Care

(Catholic Community Services 2011; Department of Families, Housing, Community Services and Indigenous Affairs 2013; Mental Illness Fellowship of South Australia 2010)

Respite• Support and opportunities– New skills– Identify personal strengths– Social experiences

• Options available– Telephone support– Emergency respite– One-to-one respite with trained respite workers– Alternate/supplementary care arrangements– Short breaks/retreats

(Department of Families, Housing, Community Services and Indigenous Affairs 2013; Mental Illness Fellowship of South Australia 2010)

• http://youtu.be/6ReQ7MXxQOA

FACT SHEET

References• ARAFMI 2013a, ‘Brief History’, Mental Health Carers Australia, viewed 21 March 2013,

<http://www.arafmiaustralia.asn.au/brief-history.html>.• ARAFMI 2013b, ‘From Grassroots to National Voice’, Mental Health Carers Australia, viewed 21 March 2013,

<http://www.arafmiaustralia.asn.au/from-grassroots-to-national-voice.html>.• ARAFMI 2013c, ‘You are Not Alone’, Mental Health Carers Australia, viewed 21 March 2013,

<http://www.arafmiaustralia.asn.au/you-are-not-alone.html>.• Australian Bureau of statistics 2013, ‘Australian Health Survey: First Results, 2011-12’, viewed 18 March 2013, <

http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/4364.0.55.001Chapter1002011-12 >.• Carer Assist 2008, ‘Well Ways’, Schizophrenia Fellowship of NSW Inc., accessed 16 March 2013,

<http://www.sfnsw.org.au/Carer/Assisting-With-Education-And-Training/Well-Ways/Well-Ways1/default.aspx>.• Carer Australia 2012, ‘Carers Australia Strategic Plan 2012–2015’, viewed 17 March 2013,

<http://www.carersaustralia.com.au/storage/Strategic%20Plan%202012-2015%20e-version.pdf>.• Department of Human Services 2013, ‘Payment rates for Carer Allowance’, Australian Government, accessed 16 March 2013,

<http://www.humanservices.gov.au/customer/enablers/centrelink/carer-allowance/payment-rates>.• Department of Families, Housing, Community Services & Indigenous Affairs 2013, ‘National Carer Recognition Framework”,

accessed 25th March 2013, http://www.fahcsia.gov.au/our-responsibilities/disability-and-carers/publications-articles/carer-recognition-act-2010-guidelines

• Department of Families, Housing, Community Services and Indigenous Affairs 2012, ‘Guide to the revised list of recognised disabilities’, Australian Government, accessed 16 March 2013, <http://www.fahcsia.gov.au/our-responsibilities/disability-and-carers/benefits-payments/carer-allowance/guide-to-the-revised-list-of-recognised-disabilities-0>.

• Department of Families, Housing, Community Services and Indigenous Affairs 2013, ‘Targeted Community Care (Mental Health) Program – Mental Health Respite: Carer Support’, Australian Government, accessed 21 March 2013, < http://www.fahcsia.gov.au/communities-and-vulnerable-people/grants-funding/targeted-community-care-mental-health-program-mental-health-respite-carer-support>.

• Falloon, I., Body, J., McGill, C., Strang, J. & Moss, H. 1981, ‘Family management training in the community care of schnizophrenia’, New Directions for Mental Health Services, vol. 1981, no. 12, pp. 61-77.

References• Gray, B., Robinson, C. & Seddon, D. 2008, 'Invisible children: young carers of parents with mental health

problems - the perspectives of professionals', Child & Adolescent Mental Health, vol. 13, no. 4, pp. 169-72.• Hayman, F, 2005, ‘Helping carers care: an education programme for rural carers of people with a mental illness’,

Australian Psychiatry, vol. 13, no. 2, pp. 148-154.• Jaedim, C, Pakenham, K, 2010, ‘Carers’ views on respite care for adults with mental disorders’, Advances in

Mental Health, vol. 9, pp. 84–97.• Jaedim, C. & Pakenham, K. 2010, ‘Carers of adults with mental illness: Comparison of respite care users and non-

users’, Australian Psychologist, vol. 45, no. 1, pp. 50-58.• Kinsella, K., Anderson, R. & Anderson, W. 1996, ‘Coping skills, strengths, and needs as perceived by adult

offspring and siblings of people with mental illness: a retrospective study’, Psychiatric Rehabilitation Journal, vol. 20, no. 2, pp. 24-32.

• Lakeman, R. 2008, ‘Practice standards to improve the quality of family and carer participation in adult mental health care: An overview and evaluation’, International Journal of Mental Health Nursing, vol. 17, no. 1, pp. 44-56.

• Mental Illness Fellowship of South Australia 2010, ‘Respite’, Mental Illness Fellowship of Australia, accessed 16 March 2013, <http://www.mifa.org.au/respite>.

• NSW Health 2013, ‘NSW Family and Carer Mental Health Program’, NSW Government, accessed 16 March 2013, <http://www0.health.nsw.gov.au/mhdao/fc_mh_program.asp>.

• Mental Health Council of Australia 2012, Recognition and Respect: Mental Health Carers Report 2012, viewed 21 March 2012, http://mhca.org.au/index.php/component/rsfiles/download?path=Publications%2FRecognition+and+Respect+-+Mental+Health+Carers+Report+2012.pdf&Itemid=509

References• Ridley, J, Hunter, S, & Rosengard, A, 2010, ‘Partners in care?: views and experiences of carers from a cohort

study of the early implementation of the Mental Health’, Health and Social Care in the Community, vol. 18, no. 5, pp. 474–482.

• SESLHD, 2013, ‘Family and carers of people with a mental illness’, http://www.seslhd.health.nsw.gov.au/Carer_Support_Program/Family_and_Carers_of_People_with_a_Mental_Illness.asp accessed on 17/03/2013.

• State Government of Victoria 2006, Caring Together: An action plan for carer involvement in Victorian public mental health services, viewed 27 March 2012, <http://www.health.vic.gov.au/mentalhealth/carer/carer-involve.pdf>

• Tuffrey, C. 2012, 'Children as carers', Archives of Disease in Childhood, vol. 97, no. 2, pp. 93-5.