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Effective Interventions Unit Supporting families and carers of drug users: A review

CHAPTER 4: THE NEEDS OF FAMILIES AND CARERS

The impact of drug use creates a range of needs. These can differ from family to family and also family member to family member. In this Chapter we examine the needs of the families and carers of drug users and set out a range of resources available in Annex A. We discuss general needs first and then the specific needs of certain families.

General needs

The lack of research into how families cope with drug use means that little is known about their needs, the methods of meeting these needs and the effectiveness of these methods. The EIU literature review found that:

• the diverse needs of all family members are not well documented, especially those of wider kin such as grandparents but also of siblings. The research there is indicates that they amount to a significant 'hidden' population of carers for children affected by drug misuse and that they enjoy only limited support from service providers.
• much of the focus of 'need' is on children and on parents but even here needs are not often directly assessed from the viewpoint of family members themselves.
• this leads to a tendency to report professionally defined needs which may or may not correspond with user defined needs.

From our review of the evidence we have identified the following needs:

Coping with stigma and discrimination: Families say that stigma and discrimination can inhibit them from accessing support either for themselves or the drug user and increase the likelihood of 'concealment' in the family. The negative effects this can produce within the family are discussed in Chapter 3.

Accessing treatment services and to be involved in treatment process: Families report unsatisfactory experiences when trying to access support for the drug user. A particular issue that impacts upon them is waiting times to access treatment. There is particular concern about the lack of aftercare services for supporting the drug user. The family may attribute a relapse in the progress made by a drug using relative to a lack of support from agencies. This can result in frustration and can affect the family's relationship with the agency.

Assistance with how best to help their relative: As discussed in Chapter 3, there are a variety of ways of coping that families adopt: and some may actually damage the family and inhibit recovery for the drug user. It can be difficult for family members to understand how they could both help and hinder recovery without assistance to discuss and analyse their circumstances.

Access to information and training: Many family members receive their information on drugs and related problems through the media and from the community. The accuracy of information can be questionable and the family is not fully informed about drugs, their effects and the nature and course of dependency.

A range of support options to be available for families and carers: Since family members and carers react and cope differently, it is essential that there is a range of appropriate support available to them. Families and carers also need to possess the knowledge of what support exists and how they can access that support.

Emotional support: The anxiety and stress that families and carers commonly experience in relation to a relative's drug use often requires varying degrees of emotional support either from informal sources such as friends and relatives, or from more formal sources such as counselling. Relationships within the immediate and extended family can be affected, increasing the individual isolation of family members. The result is in an even greater need for emotional support. Respondents to the EIU conference survey identified the following as meeting the emotional needs of families:

• availability of local family support groups
• availability of counselling to families and carers
• telephone helpline service

Practical support: The routine pattern of the lives of families and carers may be significantly affected by the impact of drug use. They may have to cope with situations such as: a relative undertaking detox; supporting them through withdrawal; caring for dependants. This often impacts upon aspects of their lives that are crucial to their well being, such as employment, finance and social lives. Respondents to the EIU conference survey identified the following as meeting the practical needs of families:

• advocacy
• befriending
• assistance with child care, especially with regard to those caring for dependent children of drug users
• methods of coping with stress, such as complementary therapies
• access to respite

Financial assistance: The financial problems that can affect families were outlined in the previous chapter . Families relate experiences of receiving little support and the difficulties they encounter when dealing with the welfare benefit system or Social Work department.

Health information: It is imperative that families and carers receive accurate health information, especially about intravenous drug use and the associated health risks such as HIV / Aids and Hepatitis C. Without such information, they may be unable to take the necessary precautions to prevent the risk of cross infection. This is especially the case with Hepatitis C given the high prevalence among the drug injecting population and the ease of transmission.

Specific Needs

Any responses to meeting the needs of families and carers will need to understand and address the diversity of needs of such individuals. Families who may have specific needs include:

• families and carers coping with HIV/Aids or Hepatitis C
• ethnic minority families and carers
• carers
• men
• young carers
• siblings
• families in rural and remote areas
• bereaved families

1. Families and carers coping with HIV/Aids or Hepatitis C

The stigma surrounding HIV/AIDS can be extreme (EIU interviews). This seems in part to be due to the lack of a cure, its ability to be transmitted to others and the lack of understanding within society. The degree of stigma can have the effect of increasing stress among family members and their feelings of isolation. The perception of HIV/AIDS as a disease that largely affects homosexuals can cause difficulties and embarrassment for families, especially if there is a homophobic culture within the family or community. There can often be difficulties in getting the family to accept the situation and come to terms with the long-term reality of supporting someone with HIV/AIDS. Families talk of friends no longer wishing to associate themselves with the family for fear of 'catching something', and of how this, combined with their caring duties, had reduced their social lives considerably (EIU qualitative study).

The lack of a cure for diseases such as HIV means that the family may have to prepare to support their relative until they die. The often harrowing circumstances impact directly on families' own health and well being (EIU qualitative study). Often families experience financial difficulties which can be as a result of taking on the care of dependants, costs associated with the relative's treatment (e.g. travel costs to hospital) or in relation to their relative's drug use. There is also a lack of support services reported in the EIU interviews for families and those affected by HIV, especially outwith the main cities in Scotland.

2. Carers

The term 'carer' can apply to those caring for:

• dependent children of drug users
• a drug using relative
• a relative with an illness or disability related to their drug use

Taking on a caring role can vary in its intensity. Some may take on full time care for family members and may apply to the courts to award an order giving them responsibility for the care of dependants. Other carers may have more informal arrangements and care may be for a temporary period: for example, when the drug user is accessing treatment such as residential rehabilitation. Such informal care arrangements can create difficulties for carers involved with other agencies regarding the welfare of the dependant, e.g. on education and health issues. Often there can be tensions created around what is best for the child, with some carers highlighting how the child could be used as a bargaining tool by the drug using parents. Examples of relatives being manipulated with the threat of them not being able to see their grandchildren were not uncommon and produced enormous strain within families (Aberlour 2002).

Carers are likely to experience the range of problems identified in Chapter 3. More specific needs of carers relate to issues including:

• recognition of the carer's role and their rights
• family dynamics
• care arrangements
• accessing benefits

Recognition of the carer's role and their rights

Family members involved in caring for drug users or their dependants often report that they do not see themselves as 'carers' and as a result perceive that they have few rights. This appears to be reinforced by an analysis of publicity and information on carers' organisations.

The EIU conference survey suggested carer organisations were the least used form of support and that families had not found the assistance offered helpful. This raises two issues:

• some carer organisations may not recognise families as 'carers'
• organisations may be unfamiliar with how best to support them.

These factors will make it more difficult for carers to access information regarding their rights. Carer organisations provide a wide range of support that is well developed and structured. They have a lot of knowledge and expertise that can help families and carers e.g. about their rights, benefit issues.

Family dynamics:

Carers state that there is significant pressure on them from the strain of both looking after dependent children and their concern for the drug user. This can be further compounded by some of the behavioural dynamics that can affect dependent children living with drug use, such as isolation, hyperactivity, risk-taking behaviour and aggression (EIU literature review). This presents carers with added difficulties in coping with their new roles and responsibilities. Dependent children may need support to:

• promote social confidence
• strengthen inter-personal skills
• increase self-esteem
• develop skills and problem solving strategies
• decrease social isolation

(EIU literature review)

Such support would benefit the child but also assist the carer in reducing the behavioural and emotional difficulties they have to cope with. It may also reduce risk-taking behaviour and the chance of the dependant developing their own problems with drugs: something highlighted as a main concern of carers bringing up teenage dependants (EIU interviews).

Care arrangements and carers' rights:

The EIU interviews found that carers often felt insecure about their rights in relation to care arrangements. Some carers spoke of being unsure of what their position was and also of being wary of seeking support or information from statutory organisations in case this had an impact on the dependant, themselves or the drug using parents. Others had sought assistance legally but this often had a significant financial cost unless Legal Aid was available.

In general families have three options regarding the care arrangements for dependent children:

• Voluntary agreement between carer and parent: this has the advantage of being relatively easy to arrange but can leave the carer having little control over the situation and with little rights regarding the child's welfare.
• Legal process: a number of orders can be applied for through the Court system. These can sometimes take a considerable time to be heard and also costs can be significant.
• Children's Hearing system: considers what best supports the needs of the child and will involve input from various agencies as well as independent panel members. Decisions can be reviewed over specific periods of time

Many carers involved in the EIU interviews said that taking on full time care of dependants was a considerable commitment. Informal arrangements often left the carer feeling insecure and with no rights regarding the child and what was best for them. Carers identified a need for some 'middle-ground' to be developed such as temporary residency. This could involve temporary residency being given to the carer while the drug using parent was unfit to look after the child adequately. This could be changed once the parental circumstances had improved. While this often happens within informal care arrangements, it can produce difficulties because the carer has no rights over the dependent and their welfare.

The 'Getting our Priorities Right' consultation paper (Scottish Executive 2001) highlights how extended family carers do not receive the same level of support as foster carers who are recognised as local authority employees. It further recognises that placement within the family should be the first option to explore regarding the child's welfare. The document recommends that carers should receive support in identifying options of care arrangements for the child, such as court proceedings or Children's Hearing system. Further, the report recommends that:

• a high degree of skill, sensitivity and tact is required by workers to assist families to explore the best options for the welfare of the child/children in question .
• extended family carers should receive a similar level and quality of support as that of foster carers, who are recognised as local authority employees.

Accessing benefits

Chapter 3 highlighted the financial difficulties that families can experience. Taking on the care of dependants also carries a substantial financial burden for carers but they may be unable to access benefits to help. Many local authorities provide no direct financial support to carers to assist them with coping with the financial impact of looking after dependants. Unlike foster carers, they do not receive an allowance.

The main benefits available to extended family carers are either:

• Child Benefit
• Income Support

There are numerous difficulties faced by carers in accessing such benefits. Issues identified through the EIU interviews included:

• informal care arrangements meant that carers were reliant on the drug-using parent to pass on such benefits to them. Often this did not happen: the money may be used to maintain the drug user's addiction
• delays experienced in transferring of benefits from the drug-using parent to the carer
• accessing financial support can impact on other benefits the carer may be in receipt of such as Housing Benefit

This indicates that there is a need for assistance in dealing with benefit issues and addressing some of the delays that arise.

3. Young carers

Young people may take on a caring role for a number of reasons: they may support a drug using parent or other family member; they may also have to support the main carer when they are not fit enough to cope, taking on a substantial burden of responsibility. It is important that support should attempt to meet their needs in regard to the role they have in the family. Evidence suggests that when children take on a parenting role, it can impact on their own subsequent parenting experiences and their use of substances (EIU literature review).

Being a young carer can impact upon several aspects of their lives:

• anxiety and worry for the wellbeing of the person they are caring for
• isolate them socially from other peers
• reduce their capability to study and cope with their education
• reduce career opportunities

• feelings of isolation and stigma

• ill health, poverty and low income

Support should aim to address such issues and reduce the isolation and responsibilities that they have. The Community Care & Health Act 2002 when fully implemented, will allow young carers under 16 years of age to request an assessment of their needs without their parent (s)/guardian consent.

4. Families in rural and remote areas

A recurrent theme of the EIU interviews was the needs of families living in rural areas. In the past, there has been a lack of resources available to support the drug user and their family. There is a perception that agencies see families as coping adequately and are unsure what support could be offered to them. As a result, families are left to cope alone as best as they can.

There are 3 key factors to the needs of families in rural areas:

• Visibility: Families seeking support often feel vulnerable because it is difficult to remain anonymous in a small community. It may be that the family will know the person they seek support from or are afraid to be seen seeking support by others. Confidentiality is thus an issue (EIU literature review). As a result, increased levels of concealment may be common. Such concealment could prevent families from obtaining knowledge about service provision and support. This was also highlighted by the EIU literature review as an issue in rural areas. Feelings of exposure can lengthen the time taken for a family member to seek support. It can also mean that they may experience greater levels of crisis before seeking support.

• Stigma: Linked to visibility is the level of stigma associated with drug use. Participants in the EIU interviews felt that not only drug users but also their families were viewed very negatively by their community and by agencies.
• Accessibility of services: Accessing support in a rural area can involve travelling substantial distances. Almost sixty percent of drug projects are based within the main cities of Aberdeen, Dundee, Edinburgh and Glasgow (SDF Directory). Transport can be limited and expensive so that access to appropriate services can become virtually impossible.

All these factors limit the type and array of support available to the family and decrease the chance of them accessing a method of support that is appropriate to their needs. The support that is available may then experience pressure in trying to accommodate and meet the needs of families.

5. Ethnic minority groups

Ethnic minority groups make up approximately 1.5% of the Scottish population (Source: Labour Force Survey, 1999 data). A large proportion of this population originates from Pakistan, Bangladesh and China. Although people from minority groups live throughout Scotland a large percentage reside within the main urban cities of Glasgow, Edinburgh and Dundee. Agencies working with ethnic minority drug users are focused in these areas. There are several needs that should be taken into account when offering or developing support for families and carers within this group:

• Language difficulties: Not all people speak English. This is more likely to be the case when a parent or grandparent seeks support. Difficulties can also arise from the lack of information available in different languages: ADFAM and Lifeline produce drugs information in Punjabi and Bengali (See Chapter 9).
• Cultural sensitivity / family dynamics: Within some cultures it can be seen as inappropriate to seek support from outside the family unit. There can also be difficulties of age and gender, in that a young white male support worker may be an inappropriate choice to work with a middle aged Muslim mother.
• Mistrust of external agencies. There can be a reticence to involve services such as social work due to mistrust, unfamiliarity and stigma.
• Different types of drug use: There can exist different cultures of drug use within different ethnic minorities. The use of stimulants such as cocaine and crack appears to be more common among certain ethnic minorities. This can affect the behavioural issues that families have to cope with and may require different approaches.

6. Men

Evidence gathered from the EIU qualitative survey, interviews, and from the literature review highlighted consistently that mothers were most likely to seek support. This can result in the support being tailored towards the needs of women and particularly mothers. The needs of men may remain hidden and unidentified.

There are numerous factors that can contribute to this situation:

• the mother (or other family member) may conceal the drug use and its effects from the father to minimise conflict in the family.
• the reaction of some male family members may be to demand that all ties are cut with the drug user. This may create conflict with family members who perceive that the drug user needs support from them.
• men may have greater difficulty discussing their feelings and emotions and internalise and ignore them as a way of coping. This can lead to an increase in their own use of substance such as alcohol and further tension thus being created.
• men can react differently towards a drug using relative depending on whether the relative is a daughter or son.

(EIU literature review)

7. Siblings

There can be a considerable impact upon brothers and sisters and again there can be little support available to assist them in coping. The EIU literature review identified that the needs of siblings are not well documented by research. We have identified a number of key factors likely to impact on their specific needs:

• Isolation: Siblings can be ignored in the family as all focus tends to go towards the drug using relative. Siblings may themselves withdraw from the family in response increasing their isolation within the family.

• Relationships and dynamics: The impact that the drug user can have on the relationships and dynamics within the family can reinforce the isolation experienced by siblings and the concealment they adopt in coping, the negative consequences of which are discussed in Chapter 3.

• Preferential treatment towards the drug user: Sometimes the drug user may be seen to be receiving preferential treatment which can result in siblings adopting similar behaviour (EIU interviews). There can also be an increased chance of substance use among siblings, in part related to the exposure to drug use and access to substances.

8. Bereaved Families

Families who have had to cope with bereavement may still require support for a considerable time. The impact of bereavement can affect ongoing relationships in the family and also the well being of family members:

• they may be left with feelings of guilt and responsibility that they could not prevent the death of a relative
• parents do not expect that they should outlive their offspring

• sometimes bereavement can occur after recovery and be in part due to the physical damage that the drug user has suffered previously.

Annex A

RELEVANT LEGISLATION AND RESOURCES

LEGISLATION:
The main legislation governing carers and dependants are:

The Children (Scotland) Act1995
http://www.hmso.gov.uk/acts/acts1995/Ukpga_19950036_en_1.htm
The Act covers: parental responsibilities and rights, guardianship, court orders, support for children and their families, children's hearings, protection and supervision amongst other areas.

The Carers (Recognition and Services) Act 1995
http://www.hmso.gov.uk/acts/acts1995/Ukpga_19950012_en_1.htm
A Carer is someone who provides regular and/or substantial care to a relative, neighbour or friend. Where a person is eligible for a Community Care Assessment, their carer has the right to request an assessment of their own needs as a Carer. The Carers Act requires the Local Authority to have regard to the result of the Carers Assessments when making decisions about services to be provided to the user.
The aim of this Act is to give greater recognition to the needs of Carers.

The Community Care and Health Act (Scotland) 2002
http://www.hmso.gov.uk/legislation/scotland/acts2002/20020005.htm
The Act covers the implementation of free personal and other care, the regulation of charging for social care, and rights of assessment for informal carers including young carers.

Social Work (Scotland) Act 1968
Section 12 of the Social Work (Scotland) Act 1968 places a general duty upon local authorities to promote social welfare in their areas and to provide advice, guidance and assistance for certain categories of people in need, aged over 18 years.

RESOURCES

Blood Borne Viruses:

HIV/Aids Carers Group - 0141 221 8100
http://www.hiv-aids-carers.org.uk /
The Group provides a range of services including:

• Telephone support service
• One-to-one support
• Home visits
• Hospital visits
• Counselling
• Information on HIV-AIDS, bloodborne viruses, testing, safer sex, carers issues, addictions etc.
• Respite
• Mutual support groups
• Advocacy
• Stress therapies

Terence Higgins Trust - 0845 1221 200
www.tht.org.uk

The Trust provides direct services to those affected by HIV and delivers health promotion campaigns relating to HIV. It also publishes a range of publications.

National Hepatitis C Resource Centre: 020 7735 7705
www.isvad.com/hepccentre/main.htm

Provides information to people living with hepatitis c, healthcare professionals and the public.

Carers:

Princess Royal Carers Trust - provides training and support to carers centres. Also offers a range of grant schemes and carers relief fund.

Tel: (0141) 221 5066
http://www.carers.org/home /

Children in Scotland - national agency for voluntary, statutory and professional organisations working with children and families.

0131 228 8484
www.childreninscotland.org.uk/index.html

Family Rights Group - provide advice and support for families whose children are involved with social services

020 7923 2628
http://www.frg.org.uk

Bereavement:

Cruse Bereavement Care: 0870 167 1677
www.crusebereavementcare.org.uk

Provides Helpline support, information about local groups, publications and website

Young Carers:

Young Carers Initiative (YCI): 01962 711511
www.childrenssociety.org.uk/youngcarers/initiative.htm

YCI work with young carers' projects and other organisations to develop good quality support and information for young carers, their families and those who work to support them. The aim of YCI is to develop a coherent National Focus for young carers, their families and those who work to support them and to promote common standards and to work towards realisation of equitable services.

Young carers good practice guide: Published by the Princess Royal Carers Trust with support from the Scottish Executive, the document aims to build on existing good practice, ensuring that the highest quality services are offered to young carers. The document covers:

• how to develop a young carers project
• day to day operation of the service
• management responsibilitiespolicies and complaints
• good practice procedures
  www.carers.org/docs/Young%20Carers%20GPG.pdf

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