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Mental health
Mental health: ethnic minority carers’ experiences
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Becoming a carer :
Becoming a mental health carer
Reasons for caring and carers' qualities
How caring affects carers :
Working life and life opportunities
Relationship to the person cared for
Children, family and social life
Stress and carers' health
Negative attitudes to mental health problems
Looking after yourself and getting help :
Getting the balance right
Support from family, friends and community
Support from spirituality and religion
Support from carers' services
Carers' assessments
Caring for someone with a mental health problem :
Giving emotional and practical support
Taking control - difficult situations and medication
Carers' views: mental health problems & causes
Carers' views on treatment and cure
Carers' experiences with mental health services :
Services and minority ethnic communities
Carers' voice and confidentiality issues
Working with GPs and Psychiatric Consultants
Dealing with hospitals
Services in the community
What carers want :
What different cultures can teach us
Carers advice for support and information services
Carers' advice about carer policies
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Mental health: ethnic minority carers’ experiences
Subject index
Clip
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Aiko - Interview 17
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Aiko was reluctant to take medication for her own depression.
Aiko has been caring for her husband who suffers from complex post traumatic stress syndrome, bi-polar disorder and severe depression for seven years. She believes mental health services should address the needs of the whole family.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for other or more than one relative
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Raye - Interview 30
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Raye felt she had to take on responsibility for her father, brother and sister but she says she took on too much.
Raye grew up with mental health problems in the family. Today, she is the main carer for her father (paranoid schizophrenia), her sister (schizophrenia) and her brother (manic depression). She now feels she needs to let go of some of the responsibilities and focus on her own life.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
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Miriam - Interview 05
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A friendly doctor took time to talk properly to Miriam and her son.
Miriam carers for her son who is in his late twenties. He has been diagnosed with schizophrenia but she thinks what he has is drugs infused psychosis.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
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Nick - Interview 02
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Despite the attitudes of professionals, Nick involves himself but always asks his son's permission.
Nick and his wife have cared for their son with paranoid schizophrenia for almost 12 years. In the beginning Nick didn't feel heard by health professionals, but today he is a very involved.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a parent
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Nita - Interview 12
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Nita thinks professionals should give time to both carers and patients.
Nita cares for her mother who is diagnosed with manic depression. She thinks it is essential that carers have their own needs met and that they get support to come to terms with the loss and hurt they may feel.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for other or more than one relative
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Guo - Interview 14
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In the USA Gou could go to weekly meetings at the hospital and talk to health professionals about his son.
Guo has been caring for two sons with bi-polar disorder for over twenty years. He doesn't think the current services meet the needs of people with mental health problems.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a sister or brother
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Ramila - Interview 13
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Ramila thinks it is unfair that carers absorb all the stress without enough support.
Ramila has been caring for her brother who is diagnosed with schizophrenia for ten years. She thinks carers and service users deserve to be treated with more respect.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Aiko - Interview 17
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Aiko says that in Japanese culture you put yourself aside to care for those who are vulnerable.
Aiko has been caring for her husband who suffers from complex post traumatic stress syndrome, bi-polar disorder and severe depression for seven years. She believes mental health services should address the needs of the whole family.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for other or more than one relative
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Raye - Interview 30
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Raye describes how caring for someone with a mental health problem requires time and expertise, and doesn't fit well with the 9-5 professional schedul
Raye grew up with mental health problems in the family. Today, she is the main carer for her father (paranoid schizophrenia), her sister (schizophrenia) and her brother (manic depression). She now feels she needs to let go of some of the responsibilities and focus on her own life.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
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Miriam - Interview 05
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Her youngest children worry about their older brother and think they may have to look after him one day.
Miriam carers for her son who is in his late twenties. He has been diagnosed with schizophrenia but she thinks what he has is drugs infused psychosis.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Aiko - Interview 17
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Aiko has decided not to tell her parents in Japan just yet about her husband's illness.
Aiko has been caring for her husband who suffers from complex post traumatic stress syndrome, bi-polar disorder and severe depression for seven years. She believes mental health services should address the needs of the whole family.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a sister or brother
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Angela - Interview 15
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Living in a polygamous family created tension rather than support.
Angela cared for her brother with mental health problems for much of her adult life. Once her brother was cured, she was finally able to get married and have a family, the absence of which had been as source of great pain for her.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
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Miriam - Interview 05
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Having other people talk about 'how to express emotion' may be insulting to carers.
Miriam carers for her son who is in his late twenties. He has been diagnosed with schizophrenia but she thinks what he has is drugs infused psychosis.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
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Jane - Interview 22
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Jane grieves that her daughter will never have friendships, get married and have children (played by an actor).
For the last 20 years Jane and her husband has cared for their daughter Sarah, who has schizophrenia. She worries about what will happen to their daughter when they are not around anymore.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for other or more than one relative
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Indira - Interview 08
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She is sad she could not be with family members in India when they were dying.
Indira has been caring for her aunt who has Alzheimer's disease for five years. She believes older people deserve to be treated with respect.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
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Sarah - Interview 25
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Sarah says the professionals must have known how hard it was to look after her son, but offered little support (played by an actor).
Sarah cares for her son who has shcizophrenia. She is active in several carer's oganisations.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Pooja - Interview 23
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Pooja used to rely on her husband, but now the roles have reversed.
Pooja has cared for her husband for 12 years. He suffers from depression and from other health issues and is very dependent on her.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
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Jane - Interview 22
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Jane thought the early signs of her daughter's mental health problem were normal 'teenage stuff' (played by an actor).
For the last 20 years Jane and her husband has cared for their daughter Sarah, who has schizophrenia. She worries about what will happen to their daughter when they are not around anymore.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
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Nick - Interview 02
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Nick was worried about his son's behaviour, but was told by doctors it was normal.
Nick and his wife have cared for their son with paranoid schizophrenia for almost 12 years. In the beginning Nick didn't feel heard by health professionals, but today he is a very involved.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a parent
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Anton - Interview16
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When his mother's dementia got worse at he same time he had depression, Anton stopped working and moved in with her.
Anton cares for his 84 year old mother who suffers from dementia. His caring responsibilities together with his own health problems meant he had to take early retirement, but he is very involved in voluntary work.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
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Leah - Interview 28
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Leah likes to help other Chinese people with translations when they go to the doctor (recording in Chinese).
Leah has been caring for her son Albert with schizophrenia for 17 years.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a sister or brother
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Ramila - Interview 13
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Ramila says carers have an understanding and hope that professionals don't necessarily have.
Ramila has been caring for her brother who is diagnosed with schizophrenia for ten years. She thinks carers and service users deserve to be treated with more respect.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a sister or brother
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Ramila - Interview 13
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Ramila thinks carers sometimes put up with 'being blamed' because they feel so responsible.
Ramila has been caring for her brother who is diagnosed with schizophrenia for ten years. She thinks carers and service users deserve to be treated with more respect.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
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Miriam - Interview 05
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Miriam says patient confidentiality is tricky when it puts people at risk.
Miriam carers for her son who is in his late twenties. He has been diagnosed with schizophrenia but she thinks what he has is drugs infused psychosis.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
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Miriam - Interview 05
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Miriam thinks regular communication between families and professionals can help prevent crises.
Miriam carers for her son who is in his late twenties. He has been diagnosed with schizophrenia but she thinks what he has is drugs infused psychosis.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for other or more than one relative
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Raye - Interview 30
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Being a 'super hero' isn't good for Raye or those she cares for.
Raye grew up with mental health problems in the family. Today, she is the main carer for her father (paranoid schizophrenia), her sister (schizophrenia) and her brother (manic depression). She now feels she needs to let go of some of the responsibilities and focus on her own life.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for other or more than one relative
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Indira - Interview 08
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Indira and her cousin decided to stick by their aunt when others gave up.
Indira has been caring for her aunt who has Alzheimer's disease for five years. She believes older people deserve to be treated with respect.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Ramanbhai - Interview 27
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Ramambhai feels that leaving his wife with others would have a negative effect on her so he mostly stays at home.
Ramanbhai is a full time carer for his wife who suffers from depression. It took many years before she diagnosed, and she has other health issues as well.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Kiran - Interview 26
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When the children were young, Kiran worried about them and about money (recording in Gujarati).
Kiran has been caring for his wife for seven years. She has a lot of health issues and it took over 20 years to find out that depression was an important part of her problems.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Aiko - Interview 17
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Others may not understand that she can't take breaks if it puts her husband at risk.
Aiko has been caring for her husband who suffers from complex post traumatic stress syndrome, bi-polar disorder and severe depression for seven years. She believes mental health services should address the needs of the whole family.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for other or more than one relative
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Raye - Interview 30
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Raye puts everything on hold when she worries about her father.
Raye grew up with mental health problems in the family. Today, she is the main carer for her father (paranoid schizophrenia), her sister (schizophrenia) and her brother (manic depression). She now feels she needs to let go of some of the responsibilities and focus on her own life.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Anne - Interview 20
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Anne is grieving because she feels she's lost a husband.
Anne has been caring for her husband, who has severe depression, over the last four years. She has recently returned to part time work after having been a full time carer for some time. She believes it should be a requirement that health professionals listen to carers.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Pooja - Interview 23
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Pooja gets great support from her son who lives with them, but less from her married daughters.
Pooja has cared for her husband for 12 years. He suffers from depression and from other health issues and is very dependent on her.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for other or more than one relative
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Raye - Interview 30
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When she returned after two years abroad, her brother hadn't taken on much of the care for their father, their older sister and brother.
Raye grew up with mental health problems in the family. Today, she is the main carer for her father (paranoid schizophrenia), her sister (schizophrenia) and her brother (manic depression). She now feels she needs to let go of some of the responsibilities and focus on her own life.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a parent
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Elaine - Interview 32
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She was the sole carer but her aunt called from the USA to support her father (played by an actor).
Elaine was the main carer for her father for the last four years of his life. He suffered from vascular dementia and Elaine feels both he as a patient and she as a carer were let down by the system.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Kiran - Interview 26
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Their neighbour is great company for his wife and has been there for them when crisis hit (recording in Gujarati).
Kiran has been caring for his wife for seven years. She has a lot of health issues and it took over 20 years to find out that depression was an important part of her problems.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Emily - Interview 19
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Emily describes some of the stress she went through when she first arrived in the UK and started caring.
Emily has been caing for her husband who suffers from Schizophrenia since she came to the UK three years ago. She says her relationship to God gives her peace and makes her able to cope with a difficult situation.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
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Jane - Interview 22
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She worries about who will care for her daughter when she and her husband are gone (played by an actor).
For the last 20 years Jane and her husband has cared for their daughter Sarah, who has schizophrenia. She worries about what will happen to their daughter when they are not around anymore.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a parent
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Anton - Interview16
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Anton's siblings leave most of the care to him.
Anton cares for his 84 year old mother who suffers from dementia. His caring responsibilities together with his own health problems meant he had to take early retirement, but he is very involved in voluntary work.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Marcie - Interview 04
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She had a terrifying time when her husband went missing for four days.
10 years ago Marcie's husband Larry was diagnosed with Alzheimer's disease. Today he is completely depended on her and Marcie gave up her job as a Ward Clark to look after him. Most of Marcie's time is taken up with caring for him, which is restricting and isolating.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
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Nick - Interview 02
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Nick was unprepared for looking after his son when he was released to his care.
Nick and his wife have cared for their son with paranoid schizophrenia for almost 12 years. In the beginning Nick didn't feel heard by health professionals, but today he is a very involved.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a sister or brother
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Angela - Interview 15
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Angela says people in hospitals don't get the care, support and empathy which they need and which helped her brother to recover.
Angela cared for her brother with mental health problems for much of her adult life. Once her brother was cured, she was finally able to get married and have a family, the absence of which had been as source of great pain for her.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Ramanbhai - Interview 27
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Getting annoyed or angry didn't work and Ramanbhai now speaks to his wife in a gentle, comforting way.
Ramanbhai is a full time carer for his wife who suffers from depression. It took many years before she diagnosed, and she has other health issues as well.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
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Miriam - Interview 05
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When her son is unwell she visits several times a day to make sure he is OK.
Miriam carers for her son who is in his late twenties. He has been diagnosed with schizophrenia but she thinks what he has is drugs infused psychosis.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a sister or brother
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Ramila - Interview 13
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It makes sense to do a joint weekly shop for herself and her brother, but Ramila feels uncomfortable about not keeping his money separate from hers.
Ramila has been caring for her brother who is diagnosed with schizophrenia for ten years. She thinks carers and service users deserve to be treated with more respect.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
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Jane - Interview 22
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Jane wants her daughter to become independent so she can cope when her parents are no longer there.
For the last 20 years Jane and her husband has cared for their daughter Sarah, who has schizophrenia. She worries about what will happen to their daughter when they are not around anymore.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
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Leah - Interview 28
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Leah has started to tell her son how to do things instead of doing them for him, but she still rings to check (recording in Chinese).
Leah has been caring for her son Albert with schizophrenia for 17 years.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Anne - Interview 20
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Anne says she still needs to look after herself even when her husband goes missing.
Anne has been caring for her husband, who has severe depression, over the last four years. She has recently returned to part time work after having been a full time carer for some time. She believes it should be a requirement that health professionals listen to carers.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a sister or brother
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Ramila - Interview 13
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Her brother is never violent when he is unwell, but when he doesn't want to talk to her she worries for his safety.
Ramila has been caring for her brother who is diagnosed with schizophrenia for ten years. She thinks carers and service users deserve to be treated with more respect.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Kiran - Interview 26
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He tries to avoid arguments by talking to his wife in a calm, gentle way (recording in Gujarati).
Kiran has been caring for his wife for seven years. She has a lot of health issues and it took over 20 years to find out that depression was an important part of her problems.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Anne - Interview 20
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As a carer, she is clearer than the professionals that her husband experiences strong side effects from his medication and has suicidal thoughts.
Anne has been caring for her husband, who has severe depression, over the last four years. She has recently returned to part time work after having been a full time carer for some time. She believes it should be a requirement that health professionals listen to carers.
Mental health
>>
Mental health: ethnic minority carers’ experiences
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People caring for other or more than one relative
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Raye - Interview 30
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While her father can present well to doctors, she is used to having him sectioned when he needs to be safe.
Raye grew up with mental health problems in the family. Today, she is the main carer for her father (paranoid schizophrenia), her sister (schizophrenia) and her brother (manic depression). She now feels she needs to let go of some of the responsibilities and focus on her own life.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
>>
Nick - Interview 02
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When his son stopped taking his medicine he ended up hitting Nick.
Nick and his wife have cared for their son with paranoid schizophrenia for almost 12 years. In the beginning Nick didn't feel heard by health professionals, but today he is a very involved.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a parent
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Amar - Interview 01
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Amar felt awful when she had to have her mother sectioned because her mother refused medication, putting herself at risk.
Amar's mother got a schizophrenic disorder around the time the family moved from Kenya via India to England. Over forty years later, Amar is her mother's main carer, on top of a full time job and being a parent.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Rani - Interview 07
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Despite her own ill health, she needs to look after her husband's physical health as well as supporting him during his depression.
Rani cares for her husband who has depression and he is very much dependent on her. She finds it hard, especially since she suffers from ill health herself.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for other or more than one relative
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Raye - Interview 30
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Raye has depression and an eating disorder, but feels luckier than her father, sister and brother.
Raye grew up with mental health problems in the family. Today, she is the main carer for her father (paranoid schizophrenia), her sister (schizophrenia) and her brother (manic depression). She now feels she needs to let go of some of the responsibilities and focus on her own life.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a sister or brother
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Sophie - Interview 09
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Sophie worries that her sister is taken advantage of in the residential care home.
Sophie has always had a caring role for her sister Angel. Angel is diognosed with Schizophrenia, but Sophie thinks this diagnosis is based on behaviour resulting from inappropriate medication of a mental disability and behavioral problems.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Emily - Interview 19
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Emily wants her husband to be less dependent and for herself to get more education. She feels God is helping her.
Emily has been caing for her husband who suffers from Schizophrenia since she came to the UK three years ago. She says her relationship to God gives her peace and makes her able to cope with a difficult situation.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for other or more than one relative
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Raye - Interview 30
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Raye feels she needs to set new boundaries both for her father and for the health and social services.
Raye grew up with mental health problems in the family. Today, she is the main carer for her father (paranoid schizophrenia), her sister (schizophrenia) and her brother (manic depression). She now feels she needs to let go of some of the responsibilities and focus on her own life.
Mental health
>>
Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
>>
Sarah - Interview 25
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Sarah's daughters gives practical help, and their strong relationships are a source of strength and emotional support (played by an actor).
Sarah cares for her son who has shcizophrenia. She is active in several carer's oganisations.
Mental health
>>
Mental health: ethnic minority carers’ experiences
>>
People caring for their husband, wife or partner
>>
Ramanbhai - Interview 27
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Ranambhai's daughter gives practical and emotional support to his wife, including discussing 'women's things' with her.
Ramanbhai is a full time carer for his wife who suffers from depression. It took many years before she diagnosed, and she has other health issues as well.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a son or daughter
>>
Miriam - Interview 05
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She feels she wears out her few friends here, whereas communities back home might be more supportive.
Miriam carers for her son who is in his late twenties. He has been diagnosed with schizophrenia but she thinks what he has is drugs infused psychosis.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for their husband, wife or partner
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Wei - Interview 31
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Wei does not want her husband to go to hospital because it is part of her culture to care for him herself (recording in Chinese).
Wei has been caring for her husband since he got mental health problems more than 20 years ago.
Mental health
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Mental health: ethnic minority carers’ experiences
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People caring for a parent
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Anton - Interview16
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In some African societies, families can personally care for loved ones in hospital.
Anton cares for his 84 year old mother who suffers from dementia. His caring responsibilities together with his own health problems meant he had to take early retirement, but he is very involved in voluntary work.
Mental health
>>
Mental health: ethnic minority carers’ experiences
>>
People caring for other or more than one relative
>>
Guo - Interview 14
>>
In the USA Gou could go to weekly meetings at the hospital and talk to health professionals about his son's care.
Guo has been caring for two sons with bi-polar disorder for over twenty years. He doesn't think the current services meet the needs of people with mental health problems.
Mental health
>>
Mental health: ethnic minority carers’ experiences
>>
People caring for a son or daughter
>>
Tina - Interview 18
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Instead of offering friendliness and support, Tina says, people sometimes act as if mental health problems are contagious (played by an actor).
Tina cares for her son who suffers from mental health problems and she is also working as a carer for people with mental health problems at an Asian community centre.
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