Monday, May 2, 2016

Providing Emotional Support for Parents of Eating Disordered In-Patients

By Allison L. Hall, MSW, LICSW
“Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.” Elizabeth Stone
For many parents, having their child admitted to the hospital is one of the most frightening experiences in their parenting career.  Hospitalization can cause a sense of vulnerability, with reliance on strangers to protect and care for their most valued asset.  Sense of control is taken away, and the natural instinct to be their child’s savior is usurped.  Sleep, diet, self-care, work, other children, and outside responsibilities are generally interrupted.  In brief, the world feels like it has turned upside down.  Similar experiences extend to parents of children hospitalized for medical complications of an eating disorder, although given the unique characteristics of the diagnosis there are additional considerations for this population of caregivers.

Understanding the Parent Perspective

In eating disorder care, parents are the front line of treatment.  While battling an eating disorder is exhausting for everyone involved, treatment providers go home at the end of the day.  On the other hand, at the end of their day, parents are in the position to bring the eating disorder home with them.  Parents are tasked with implementing recommended changes outside of the treatment setting, supporting their child to all indicated appointments, taking control of the food shopping, preparation and presentation, modeling healthy eating, utilizing meal coaching strategies, supporting their child in implementing coping skills, monitoring bathroom use, communicating with the treatment team, and promoting a healthy home environment.  This arduous list of responsibilities is added to the already busy lives of parents who are generally juggling multi-sibling households and career demands.
It is also crucial to acknowledge anticipated emotional responses that are likely to include various combinations of guilt, shame, embarrassment, fear, shock, anger, grief, confusion, frustration, and overall exhaustion.   Findings indicate that carers of children with eating disorders are at especially high risk for psychological distress.  1 ( ——– the 1 needs to be a superscript) By the time children reach the need for hospitalization, parents are likely to feel like they have just run a marathon, but know they are still nowhere near the end of this unwelcome journey.  When asked what she would most like professionals to understand of her experience, one mother states, “It’s overwhelming.  I’m only going to hear 2% of what you tell me.  We are in crisis for a long time, and need providers to have patience.”

Acknowledging the Stigma

According to a recent publication, research exploring stigmatizing attitudes and beliefs of the public toward individuals with eating disorders suggest prevalence of themes such as personal responsibility, attention-seeking, weakness of character, and an issue that should be easily overcome. 2 (—–this 2 needs to be a superscript) Eating disorders are the 3rd most common illness of adolescence 3(—–this 3 needs to be a superscript), however they continue to be surrounded by stigma, stereotypes, and misconceptions.  Because of this stigma, parents are oftentimes resistant to sharing the diagnosis with their support system, their child’s school, their employers, etc.  This resistance to sharing can lead to isolation and minimizing access to the concrete help and emotional support needed in times of crisis.  For parents who choose to share their child’s eating disorder diagnosis, they are at risk of becoming recipients of negative, blaming comments.  As stigmatizing attitudes and beliefs are not limited to the general public and can extend to health care providers, many parents are on the receiving end of damaging remarks made by the providers who are charged with caring for their children.

Offering Psychoeducation

Sorting through the massive array of literature, information, websites, books, and articles available on the topic of eating disorders is an overwhelming, time consuming task.  Arming parents with the knowledge of diagnostic criteria, epidemiology, common characteristics, indicated treatment, and anticipated challenges is an essential component to preparing them for battle with an eating disorder.  Proper education can also help families identify and cease unhealthy patterns and coping mechanisms that are actively empowering the eating disorder.  Having previewed resources available to parents can save time and stress, as well as ensure that parents are learning from valid sources.  Various forms of education are recommended, such as verbal, written articles, books and pamphlets, and available websites as people tend to learn in various ways.     

Managing Self-Care     

While tending to the needs of a child in the hospital, it is easy for parents to lose sight of self-care.  Their own needs tend to fall by the wayside, which can lead to many forms of exhaustion.  Exhausted parents are not necessarily well-equipped to care for their children upon discharge, a time in which they will need to be at their best to enforce adherence to recommendations in the home setting.  Treatment providers can help support parents in implementing self-care in many ways.  For instance, simply acknowledging the toll that this experience takes on the entire family can bring parent needs to the forefront.  Giving family members permission to take time out of the hospital, sleep at home, and go for a walk or sit down in the cafeteria can alleviate the guilt that may be preventing caregivers from taking a break.  Asking parents what they tend to do to relieve stress and/or relax in their routine life can give providers direction in tools to recommend to parents when indicated.  Suggesting the caregiver consider the option of therapy for themselves during this crisis might also be considered.  Other strategies include exploring the option of sharing shifts at the hospital, and taking friends and family members up on offers to help.  The family support system is frequently eager to provide assistance, and can truly alleviate the day-to-day demands on parents.
Suggestions for Providers
Introduce yourself and your role to parents as soon as possible, and welcome them to the treatment team
Identify what you will request from parents, and when you will need them present
Communicate daily with parents,  involve them in conversations and value their input
Review the treatment models practiced
Offer various forms of psychoeducation
Encourage self-care
Validate their emotional responses
Demonstrate  empathy and compassion
Normalize the need for ongoing support from their team, loved ones, and peers

Suggestions for Parents
Know the treatment team
Ask early on what the expectations for you will be during the admission
Communicate daily with the team
Inquire about the treatment model used
Implement self-care
Provide your cell number to providers to encourage communication when you are not present
A common goal of all involved is to help support the child struggling with the eating disorder in achieving quality of life.  In order to reach this goal, it is essential that parents’ needs are considered and tended to.  Due to the demands placed on parents caring for their eating disordered child, they are at high risk for stress and fatigue.  To help decrease the stress and demands on parents, there are many options for support that can be offered by the remainder of the team.  Interventions given to caregivers in early onset cases may be most effective 4,(—–this 4 needs to be a superscript) therefore, it is crucial that treatment providers are prepared with supports from the initial stages of care.

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