Adfam Hepc FI
Russell Webster

Russell Webster

Criminal Justice & substance misuse expert and author of this blog.

Help for the families of people with Hepatitis C

Adfam resource provides practical and emotional support to the family and friends of those with hepatitis C or who inject drugs

Information and advice

In 2015, hepatitis C was the most common infection amongst people who inject drugs. Around two in five people who inject drugs are living with chronic hepatitis C. Drug use can affect the whole family, as can a diagnosis of hepatitis C. Having a loved one with a drug problem or who is ill may put a lot of practical, financial and emotional pressures on family members. 

A new booklet from Adfam is designed to help reduce any potential fear or emotional strain.

About Hepatitis C

Hepatitis C is a blood-borne virus that predominantly affects the cells in the liver. It is spread by direct exposure to infected blood, for instance through the sharing of needles. Despite the fact that there are around 160,000 people in England infected with hepatitis C, very little is known about it by the general public.

Misunderstandings about hepatitis C can lead to the stigmatisation of those who have it. Sometimes this stigma is also felt by the families of those with the condition. Due to the high occurrence of hepatitis C amongst people who inject drugs, the infection is associated with drug addiction, which also bears its share of stigma. Greater awareness can help to dispel the fear and prejudice that affects people living with hepatitis C. This is particularly important because the stigma attached to hepatitis C can be as damaging as the infection itself. Stigma causes
depression, isolation and guilt and can prevent people from seeking treatment.

Contents

The Adfam booklet is well laid out and concise and includes helpful sections on:

  • Symptoms
  • Preventing the spread of Hep C
  • Testing and Treatment

before going on to explore the impact of Hepatitis C on the family.

Impact on the family

The effects of hepatitis C extend beyond the person carrying the infection. It can be very worrying for families. They may worry for the physical health of their loved one and they may also be concerned for their own health. They may be worried about the stigma associated with hepatitis C, or they may even contribute to it.

Adfam research found that a hepatitis C diagnosis can be very worrying. Sometimes uncertainty is a bigger cause of stress than a diagnosis. A diagnosis can provide hope, in the form of treatment, and offers a sense of control.
The family experience varies for a number of reasons. For the families of people who currently inject drugs, it can be quite low down on a long list of worries.

Family members with hepatitis C often report feeling alienated or distanced from the rest of their family. Some are told to eat in a separate room, or feel that they cannot hug their children. It is unnecessary to bar physical contact with family members, or to use separate cutlery, just as it is unnecessary to cease sexual activity.

The key message of this Adfam resource is that:

Managed well, hepatitis C needn’t interfere too much with family life.

Care and support

Adfam has been helping the families of drug users for well over a generation and its practical advice on supporting your loved one and supporting yourself comes from the lived experience of many thousands of individuals. 

This advice is summarised in the final two paragraphs of the booklet:

All carers should aim to take some time for themselves in order to boost their own wellbeing. Simple things like going for a walk, reading or spending time with other friends and loved ones can help you cope and thrive. Carers often find it useful to attend peer support groups where carers can talk openly about the challenges they face. Moreover, when families are well informed about hepatitis C, they are better equipped to deal with it.

 

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