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

CHAPTER 6: CURRENT PROVISION

This Chapter describes the range of support that is potentially available to families and carers from the statutory and voluntary sectors, and from the community. Much of this information comes from the EIU mapping exercise but it is supplemented by the EIU qualitative study and interviews. The Chapter also examines and discusses the difficulties and challenges faced by agencies and service providers in providing support to families. The difficulties and challenges facing family support groups are discussed in Chapter 7.

1. What support is currently available?

What families seek support for, and where they seek it can vary greatly. They may seek support informally from those close to them e.g. relatives, friends or colleagues, or formally from agencies. There is a range of agencies and professionals who can and do offer support to families and carers. These include:

GPs and health workers

GPs are likely to be one of the first professionals from whom families seek support, either for themselves or for the drug user. GPs can provide support to the family on the effects a relative's drug use is having upon the health of the family. They are also able to provide information on other types of support and services available, either for the family or for the drug user, and make referrals to other workers and agencies. The current development of a programme to assist those working in primary care to make interventions and support family members is discussed in Chapter 5.

Drugs agencies/workers

Drug agencies are frequently approached by family members for assistance with their circumstances. The main methods of support offered by drug agencies participating in the EIU mapping were:

• providing information and advice to families
• training
• home visits
• advocacy
• counselling
• family support

n.b. family support was not defined and may have included services aimed at drug using parents and their children, as found in the EIU qualitative study

Agencies identify many benefits from involving the families at some level, including the increased understanding that allows the family to be more supportive towards the goals of treatment (EIU mapping exercise). A further significant benefit was contact with the wider family if issues emerged about the welfare of children. Most agencies saw that the family could play a positive role in supporting the drug user. They also saw that support could improve communication and reduce conflict in the family.

Social Work

Families usually seek support from social work services either in relation to a drug using relative (who may be a social work client) or through caring for dependants of the relative. The majority of social work respondents involved in the EIU mapping exercise provided services primarily aimed at working with the drug user, or supporting drug using parents and their children. Few focused primarily on supporting families and carers, although some did employ family support workers. Often, although the emphasis was on supporting the drug user, this work also included supporting other family members.

The range of work undertaken by social work services involving those other than the drug user included:

• providing information
• making referrals
• supporting young carers
• providing diversionary activities
• carer assessment

The majority of work undertaken by social work services involved working in partnership with other statutory and voluntary sector agencies. However, there is variation in the nature and level of services for families and carers of drug users across Scotland.

Social work respondents in the EIU mapping highlighted that using a 'whole family approach' helped to increase the self-esteem and confidence of family members. It was also seen as enhancing stability within the family.

Family Support workers

The establishment of dedicated 'family support' workers is a recent development in Scotland. Some areas have been able to access funding opportunities e.g. Social Inclusion Partnership funding, to employ workers to support family members, helping to set up family support groups and developing further methods of support. Family Support Workers can provide a range of support including one-to-one support, advocacy and referral work. The structures within which Family Support workers operate varies from area to area. Some are involved in organising volunteers to deliver support; others may be part of an agency and can facilitate access to the services provided by the agency.

Carer organisations

Often those caring for drug users and dependent children of drug users do not see themselves as carers and deserving of support. Carer groups and organisations have a lot of experience in supporting people who take on a caring role to cope with the resulting stress. They provide a range of services including advocacy, referral work, complementary therapies and stress management.

Other community based projects

There are many local projects that can provide support to families, such as respite, advocacy and diversionary activities. Such practical support can often be highly beneficial to families, especially once they have recognised that they must look after themselves and consider their own needs rather than focus upon the needs of the drug user.

Family support groups

There is a full discussion of Family Support Groups in Chapter 7.

National support

There are also a number of national organisations who offer a range of advice and information and practical support. Details of these are set out in Chapter 9

2. Key factors that influence effective family support by agencies

From our consultations with agencies and service providers, including drug agencies, Social Work Departments and primary health care, and from the qualitative study, we have identified a number of factors that influence the effectiveness of support provided by agencies and service providers.

Confidentiality

This can present difficulties for agencies and service providers where the emphasis of contact is with the drug using client. The clients should be able to expect that confidentiality is maintained on what is discussed. Information may be shared with other providers, with consent and appropriate safeguards, to ensure integrated care (Integrated Care for Drug Users; Principles and Practice, EIU 2002). However, the need to respect the client's confidentiality is likely to mean that agencies can be restricted when engaging with families, especially in discussing details of their work with the client. Agencies report that often the client may not want any family 'interference'. For families this can result in them feeling that they are excluded from the process and act as a substantial barrier to engagement.

The key factor will be the level of engagement that the family seeks from the agency. They may wish to know specific information about the drug user and details of their treatment and care. Equally, they may wish only to talk through their concerns and obtain information about drugs and treatments rather than discuss their relative's details. In such cases, agencies can provide valuable information without any breaches of confidentiality. This can also help maintain a good relationship with the family and, by improving their understanding of the situation, how they cope with the impact. It can also improve the standing of the agency within the wider community.

The family may be keen to play a role in the treatment of the drug user. This should be considered during the assessment process when discussing with the client what support mechanisms exist for them, any difficulties with these support mechanisms, and what level of family involvement they are happy with. Although some clients may wish no family involvement others can be happy and indeed keen that there is someone outwith the agency to support and assist them. If agreement can be reached between the agency, client and family, the agency should then be able to recognise and support the agreed level of family involvement without fearing any breach of confidentiality.

Resources

The workloads faced by many agencies in coping with the demands for services means that there are limited resources available with which to provide support to the families and carers. Also, agencies recognise that working with families, especially if that work is at a demanding level, requires staff to be suitably skilled and equipped to perform such work adequately.

Agencies and service providers should identify the training needs of staff who are likely to have a role in supporting families and carers. Some agencies, such as Turning Point have trained family members as volunteers who can offer appropriate support. It also enables support for the client and the family to be separate and has the benefits of 'peer' support.

The relatively new role of family support workers has offered an additional resource. However, workers have experienced a range of difficulties associated with their work. These include the short term nature of funding which often restricts the development of support methods and also results in much of the worker's time being taken up with securing future funding. Accessing suitable premises was also highlighted as an issue of concern that could impact on the service they offer. Some workers experience negative reactions from family support groups, in part relating to their belief that peer support is best and that the worker does not share their circumstances. This can especially be an issue if the worker is attached to an outside agency such as a Carers centre or local drugs agency. The family support group may feel that they have lost an element of control over the purpose of the worker. This highlights the need for clear negotiation and agreement when proposals for a family support worker are being considered, especially when this involves consultation with local support groups. It is also advisable to establish the exact purpose and remit of the worker and their relationship to local support groups in order to reduce any detrimental effect on the appointment of workers or the autonomous nature of the Group.

The impact of drug use on the family's motivation and ability to sustain contact

It can be difficulty for families and carers, whose lives are disrupted by the effects of the behaviour of the drug using relative, to sustain the motivation or energy to maintain contact with agencies. They may, for example, find it hard to keep appointments. Conversely, when things are going well, families sometimes fail to keep appointments. (EIU qualitative study). Agencies could ensure that families and carers are not penalised for missing appointments and maintain an 'open door' referral system (especially if trained volunteers are on hand). They could encourage early contact if appointments are likely to be missed so that alternative arrangements can be made. The availability of 'home-visits' may also address difficulties the family may face in attending a service.

Differing expectations and aims.

Families can want a 'quick fix' and cure for the drug problem. It can be difficult for them to accept the concepts of 'harm reduction' and substitute prescribing. Families also sometimes have preconceived and negative views about services designed to minimise harm, such as needle exchanges and substitute prescribing, which they see as encouraging drug use rather than about keeping people safe. It can take a lot of time to overcome this (EIU qualitative study). This can result in conflict between the family and the agency over the goals of the treatment programme.

To try and overcome these preconceptions, agencies and service providers, should provide appropriate information verbally and in written form. By taking opportunities to explain the nature of dependency and addiction, the family is more likely to understand the aims of the treatment. This kind of dialogue also provides agencies with an opportunity to discuss what the family can expect in terms of changes in the relative's behaviour and physical condition. It can be very disconcerting for families to cope with the experience of supporting a relative through detoxification or going onto a methadone programme without this information. It also provides an opportunity to encourage and support the family to consider their own needs and provide information on how to access other support that meets these needs.

Mistrust and negative attitudes.

There is a consistent theme across the findings from all the research and evidence that families do perceive the level of support that they are offered as unhelpful. In some cases, they perceive the attitudes of staff in agencies towards then to be negative. The consequences can be that the family member feels worse about their situation and may become reluctant to try any other form of support. Agencies and service providers should recognise the sensitivities of those seeking support and ensure that staff do not display what can be viewed as negative attitudes to families of drug users or indeed the drug user.

Agencies report that the communities in which they operate often have very negative attitudes to both drug users and service providers. This can in part be due to communities not seeing any change in the impact drug users have on their lives. Drug services, by the nature of the work they do, are seen as being there to cure drug users regardless of the complexities involved. An apparent failure to do so, can lead to the view that the work the agencies undertake is ineffectual and lowers the community's, and the family's, opinion of the service.

Social work services also report a high level of suspicion towards them, much of which is based on concerns that dependent children will be removed from the family. Families believe that staff in agencies would benefit from having a greater understanding of the way that the drug using relative's behaviour affects their daily lives (EIU qualitative study). More discussion with family members and family support groups could improve this understanding as well as improving relationships between agencies and families. A recurring comment throughout the consultation by families was that they wish services would be up front and honest about what they can and cannot do. Agencies should also try to promote knowledge and understanding about the nature and purpose of their work. This kind of discussion would also assist agencies in developing clear guidelines and policies and standards of practice to ensure consistency in working with families and carers of drug users.

Lapse and Relapse

This can have a significant impact upon families and carers. The experience of seeing progress and then witnessing the relative relapse to their previous state can result in the family feeling that their situation will never change and decrease their motivation to seek support. It can also lead to increased stress and reduce their ability to cope. Agencies can provide support to families and carers to help them understand the process of change. Relapse can and does happen when drug users attempt change. It is more likely to be a stage in the process, rather than the end. With support, the family may also be able to identify what they could do to reduce the chance of relapse: for example, trying to help the drug user to avoid exposure to previous environments associated with their drug use.

Prochaska and DiClemente's ' Cycle of Change' model of dependency is frequently used in the field of drug treatment, although was first developed to treat nicotine dependency. It can provide a useful tool for families to assist them to understand better the varying factors in addressing dependency and addiction. It can also allow the family to identify ways of best coping at the stages of change in the drug user. It may be that a 'withdrawn' approach to coping can assist the drug user to move to contemplation stage, whereas a more 'engaged ' approach may assist the drug user through the action and maintenance phase.

Family relationships and behaviour

Families may function and cope in ways that prevent recovery or progress of the relative: for example by being 'tolerant', clearing up after the drug user, lending them money in order to have a quiet life or supplying them with prescription drugs. Such behaviour inhibits the chance for the drug user to face up to the consequences of their behaviour. Families often know that "tough love" is the best way forward but may feel guilty about being 'tough' with their drug using sons/daughters. Families often feel that they have divided loyalties which can lead to collusion to try to keep the family together (EIU qualitative study). One way in which agencies can help is to assist the family to understand the necessity for, and benefits of, boundaries and support them in establishing such boundaries.

Support can encourage greater communication and allow family members to address and discuss their feelings. By being able to talk about, rather than conceal, issues, families can rebuild trust and relationships. It can also mean that families respond to the drug user in a consistent way (e.g. the family all refuse to lend money rather than one giving in to demands), reducing the scope for conflict within the family and improve family dynamics and stability .

Other family issues

There are other issues within the family that can present difficulties when working with the client or the family. If these can be identified at initial stages of engagement with either the client or the family member, it would allow the agency to assess the appropriate level of involvement for the family and also identify circumstance that may adversely affect work with the client.

3. Strengthening support to families and carers

From the EIU qualitative study and mapping exercise, and the work of other organisations such as ADFAM, we have identified some ways to strengthen family support offered by agencies and service providers:

Offer a wider range of support

Agencies and organisations should recognise the wide range of support required to meet the individual needs of families and care. This should include:

• practical support, such as respite, advocacy and financial advice
• emotional support, such as counselling, befriending and group work
• support to increase knowledge and skills, on drugs, their effects and treatments; personal development, including stress management and assertiveness training; and how to access other support
• financial support to assist with caring for dependents and crisis situations
• access to drop-ins, dedicated workers and support groups

(EIU qualitative study).

This wide range of support should also aim to target specific groups such as children and siblings, men and ethnic minorities.

Increased resources

A greater level of resources would allow agencies to strengthen and develop the support they offer. There was a strong view from agencies that the short timescales often attached to funding bids reduced the opportunities for consultation to identify needs. This can often mean that need is more likely to be defined by 'professionals' rather than by the families. At worst this can mean that inappropriate methods of support are developed, or barriers remain unidentified through the lack of consultation . Further, the short term period of funding can make to difficult for new service provision to become sustainable. This is a key issue for commissioners of services and funding providers to address. Many respondents to the EIU mapping exercise stated how support could be strengthened by having a dedicated worker to support families and carers of drug users.

Work with children

There was acknowledgement throughout agencies of the need for extensive support to children. Areas identified that would assist in improving support included the need for child-centred information to be available, diversionary activities and also intensive support such as counselling. Improved access to such supports as nurseries, childminding and respite would be of particular use to those taking on a caring role.

Staff training

Drug agencies, Social Workers and primary health care staff highlighted that support could be strengthened by staff being more skilled in how best to support families and carers (EIU qualitative study). Training could help staff to develop a greater appreciation of how someone's drug use impacts upon the family and how they can respond in supporting them best. The training could be enhanced by incorporating sessions with family members and/or family support groups

Increasing access

Agencies and service providers should ensure that support is made as accessible as possible. A variety of factors can create difficulties for families and carers:

• the choice of location: can support can be taken to the family rather than the family having to attend at a venue?
• transport difficulties
• provision for child care.

Improving access should ensure there is maximum take up of support offered.

More effective networking and partnership working

Clear benefits can be gained from agencies and service providers collaborating in the support they offer to families and carers. It is also essential that agencies should know about each others services and what they can offer so that families and carers can be made aware of what support exists and how they can access it. As noted in Chapter 2, there is a difference in perception between agencies and families on the level of support available. This may partly be due to lack of knowledge about what support exists and routed of referral. This could be rectified by clearer communication between organisations and information about what support was available locally. It could be put into information material for families, which could then be used by all the relevant agencies.

Better understanding between agencies could also mean that resources are best targeted to filling gaps in the provision of support rather than duplicating work done by other agencies. Such networking should be broad and include the work of agencies such as Carers groups, health alliances and healthy living centres. This would also raise the profile of families and carers amongst organisations not normally associated with providing support and also address some of the stigma associated with drug use.

Evaluation

The lack of research into the effectiveness of services supporting families and carers means that little it is known or written about what constitutes best practice and how the effectiveness of support can be measured. Significant benefits could be gained by evaluating support in order that best practice can be developed within the agency providing support but also that such practice can be promoted to others. The EIU Evaluation Guides are available at: http://www.isdscotland.org/goodpractice/effectiveunit.htm

The EIU will produce an Evaluation Guide on family support in 2003.

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