Families and Carers in Treatment - Information for Health Professionals

Families and carers play an important role in supporting their loved one recover from an eating disorder and should be included in treatment by health professionals as a highly valued resource.

The type and level of involvement of families and carers will differ according to the individuals age and developmental status, the level of family functioning, as well as the type of treatment provided to the individual.

Health professionals need to consider the many different ways that families and carers can be involved throughout the treatment journey, regardless of whether the individual is a child, adolescent or adult. It is important to establish clear communication pathways, as well as clear confidentiality limits.

Some family factors may precipitate the onset of an eating disorder and current family functioning may maintain the eating disorder, so it is important to become aware of such factors (if present) in the assessment process and develop strategies to manage these.

Benefits of involving Families and Carers

• Participation, open sharing and collaboration helps to foster partnerships between the treating team, the individual and the family.

• Regular contact and communication help to reduce anxiety and distress in family members.

• More frequent contact during difficult times minimises potential distress.

• Open communication can help the individual to feel more supported.

• Family members can learn and develop effective ways to manage eating disorder behaviours.

Family and carer support

Families and carer should receive (1-3):

• Information and education around key issues that will help them to better understand the situation. This includes information around the eating disorder, the symptoms, the effects of the illness, treatment options, stages of illness and recovery, as well as how to navigate the health system.

• Recognition of their role and their own needs. This includes making sure family’s needs are met and that they are involved in all relevant aspects of assessment, planning and treatment.

• Access to quality services that are holistic, well- coordinated, that are delivered at the best possible standards, and that plan for emergencies and respite needs where necessary.

• Emotional support, which may include formal counselling, family or couple therapy, community support, carer networks and support groups, or simply an opportunity to talk.

• Training and education to develop the skills required to help their loved one. Particularly coping skills and skills around how to deal with crisis situations.

• Financial security information and support around housing, income and flexible employment arrangements and cost of services.

The challenges that families and carers face with an eating disorder

• Disruption of normal family routines and family life

• Cost of treatment can be overwhelming

• Feeling guilty or to blame for the illness

• Lack of support from within the family, from extended family or friends

• Not properly understanding the problem/illness

• Sense of family loss and grief

• Secretive nature of the illness

• Community insensitivity and ignorance

• Exhaustion – eating disorders can be relentless

• Difficulty in finding good professional help

• Medical complications and health crises

• Breakdown in some family relationships

• Disappointment that child’s normal development is so disrupted

• Recovery is often a long and difficult process and can seem never ending

• Siblings can be affected by the family disruption

How families cope with eating disorders

Families may re-structure or reorganise to accommodate the eating disorder, however this can contribute towards its maintenance (4). This kind of collusion with the eating disorder happens because families and carers are trying to display trust, love and support for their loved one. Some of the signs that this has happened include:

• Family members become subservient to the eating disorder food rules: e.g. the person with the eating disorder is allowed to control the type of food bought, what other family members eat, the cooking style and ingredients used, the crockery and cutlery used (and how they are cleaned), the time for eating, whether others are allowed to cook and whether eating-out is possible

• Safety behaviours are accepted: e.g. excessive exercise, body checking, fasting, vomiting.

• The family adheres to obsessive compulsive behaviours: e.g. providing reassurance ‘of course you’re not fat’; allowing the person to check or control how food is prepared; or driving the person to the supermarket to buy their binge food (5).

Families that engage in self-blame, denial, avoidance or become resigned about their loved one’s mental health issue have an increased burden of care, higher levels of emotional problems, higher levels of depression and higher levels of substance use for emotion regulation6.

As health practitioners, it is important for us to remain non-judgmental and supportive towards families and carers. When we can appreciate that families are often unsure how to help without distancing their loved one away, we can offer the information and support they need to meet their family’s needs.

The experience of treatment and recovery might bring about closer relationships between family members (7). Some families adjust and are able to thrive in the context of living with a family member who experiences a mental illness. This capacity may be related to coping strategies that the family have, which enhance their feelings of wellbeing and their capacity to adjust their family perspective and goals (for example, temporarily focusing on the goal of recovery and putting other family goals on hold or adjusting them).

In general, coping strategies such as acceptance, positive reframing, active coping and planning result in higher levels of emotional wellbeing and feeling less burdened by the illness (6).

1. Association of Directors of Adult Social Services (2010). Commissioning better outcomes for carers – and knowing if you have. The Princess Royal Trust for Carers. Retrieved from:

http://static.carers.org/files/commissioning-better-outcomes-for-carers-may-10-5079.pdf

2. Banks, P., Cheeseman, C., & Maggs, S. (1998). The Carers Compass: Directions for improving support to carers. London: Kings Fund.

3. Mottaghipour, Y., & Bickerton, A. (2005). The pyramid of family care: A framework for family involvement with adult mental health services, Australian eJournal for the Advancement of Mental Health, 4(3). Retrieved from: http://www.atoda.org.au/wp-content/uploads/mottaghipour.pdf

4. Ciao, A. C., Loth, K., & Neumark-Sztainer, D. (2014). Preventing eating disorder pathology: common and unique features of successful eating disorders prevention programs, Current Psychiatry Reports, 16(7), 453. doi: 10.1007/s11920-014-0453-0.

5. Treasure J., Sepulveda, A. R., MacDonald, P., Whitaker, W., Lopez, C., Zabala, M., Kyriacou, O., & Todd, G. (2008). The assessment of the family of people with eating disorders, European Eating Disorders Review, 16(4), 247-55.

6. Wrosch, C., Amir, E. & Miller, G.E. (2011). Goal adjustment capacities, coping, and subjective well- being: The same case of caregiving for a family member with mental illness, Journal of Personality and Social Psychology, 100(5), 934-946.

7. Robinson, E., Rodgers, B., & Butterworth, P. (2008). Family relationships and mental illness: impacts and service responses, AFRC Issues, 4, 1-19.