BY BARBARA SWOYER

Most people, when asked, might think of massage as a luxury, a splurge, something ones does at a spa or on a vacation.  It is a luxury, no doubt about it.  But for many people who are living with and managing a serious illness, massage is a therapy, a necessary component of their health care that can add to daily comfort and quality of life in so many ways.

It doesn’t matter if the patient is 18 months old or 18 years old, whether he has weeks, months or years to live.  Patients in pediatric palliative care are those who have been diagnosed with an incurable chronic illness, leading to a shortened life expectancy. Often, these patients are in need of comfort and soothing to relieve them from the day-to-day onslaught of physical and emotional symptoms that chronic illness brings.

When my son was enrolled in pediatric palliative care, massage therapy was offered as a comfort measure.   I was apprehensive at first, unsure if he would tolerate yet another person touching and treating him, no matter that the intentions were to soothe and comfort.  Upon our first visit with Sandy, the massage therapist sent through our pediatric palliative care agency, my trepidation was quickly put to rest.  Massage therapists who work with children have a special approach.  They are accustomed to young patients who might be tired, irritable, in pain, and wholly unfamiliar with massage.  These therapists know how to approach a child in a deliberately quiet and gentle manner, putting the child at ease and helping the child to allow them into their space.

“Pediatric massage therapy often looks very different from what adults know massage to be.  Working with palliative patients often means working around busy schedules and hectic environments full of medical equipment, nurses, and siblings.  Due to weeks, months or years of medical intervention, children with complex medical needs often have some negative association with touch.  Re-introducing healthy touch is a delicate and timely process.  Many of my initial visits are very hands off, mostly getting to know the child and their family – learning their touch history and communication style in order to adapt my treatment to best suit each child.”  Kerri Padgett, LMT, CPMT, Director of Integrative Therapies – Hasbro Children’s Hospital Division of Palliative Care.

I have come to view Sandy’s visits as a respite for both my son and myself.  Sandy takes the time to calmly greet my son, always asking me first about his mood and temperament, how his physical symptoms have been, and if there are any new concerns.  Upon her arrival, it doesn’t matter if he is awake or asleep, she adjusts her approach accordingly.  She is flexible as to where she treats Jake, whether it be in bed, on a couch, in a chair, at rest or at play, she finds a way to make it work where he is comfortable.

She comes with music, which plays softly in the background.  I smile when she tells me that my son has certain favorites.   She often asks for a blanket so that he can be cozy.  On days when he is irritable, she simply sits quietly with him and might do as little as rubbing his back or feet until he relaxes.  On better days, he lets her work on him more extensively, enjoying her soothing touch, small talk and music.  More than half of the time, he falls asleep and often remains that way until after she has left.

As is often the case with my son’s caregivers, over time Sandy and I have developed an easy rapport and a friendship.  Sandy has been coming here long enough to be able to know, at a glance, if I am tired or worried, if it’s been a difficult few days or weeks, and if I am in need of even just an hour of respite or someone to talk to.  I appreciate her interest in the well-being of both my son and myself.  She often encourages me to take advantage of time when she is here with Jake, to have a few moments to myself to re-charge.  As a parent who is often homebound and at times feels isolated from my busy peers, she is a social breath of fresh air, whether the topic be that of my son or anything else we might feel like talking about.

Massage therapy has become one of the components of my son’s care that I am most grateful for and most look forward to.  It has been the one consistent treatment that has helped soothe and comfort him, and provided him with even just an occasional hour of rest and relaxation.  I know that he looks forward to Sandy’s visits as much or more than I do.  I can’t think of a time when he has rejected her touch or her presence.  Massage therapy has absolutely enhanced my son’s quality of life, and I would encourage parents whose children are receiving pediatric palliative care to strive to include massage therapy as a part of their child’s comfort care plan.

“Massage Therapy has  proven to be an effective tool in reducing stress and anxiety in people with life-limiting illness and chronic pain.  There are specific protocols to address symptoms such as headaches, constipation, edema, tone and sensory differences – but also adding in massage therapy to a community based or hospital program can help reduce isolation, increase caregiver empowerment and positively enhance a family’s outlook on the care they are receiving.

Because of the many documented benefits, many pediatric palliative care programs now offer massage therapy as a service.  If this service is not offered through your agency but you are interested in trying massage for your child, here are a few tips for finding and working with a  therapist on your own.

1.  Take some time to get to know each other.  Your child’s medical history, medications and use of other therapies should be important to your massage therapist.    Working safely is always the first priority and this information will help your therapist tailor their treatment for the safety of  your child.

2. Set goals for your massage sessions.  Massage is a therapy just like PT and OT and should be goal-oriented.  Goals might be to decrease tummy upset, decrease stress and anxiety, or increase sleep.  Massage therapists will often co-treat with PT, OT or other services to help enhance their treatment or to provide a relaxing distraction for children who are resisting the other therapies.  Sometimes a family’s goal is just to have a period of quiet relaxed time.  These are all reasonable expectations of a massage session and should be discussed and assessed on a regular basis.

3. DIY.   Your massage therapist should provide you with simple techniques that anyone in the family can incorporate into the daily routine.  Parent education allows for increased massage time that may lead to increased symptom management, bonding and caregiver empowerment.

4. Self Care!  Some in-home therapists are able to treat both the child and caregiver.  Even a few minutes of nurturing touch can change your day. If your child’s therapist is unable to provide hands-on therapy, they may be able to give you some tips on self care or connect you with an adult therapist in your area.  It is never easy to find the time for self care but your wellbeing is essential to the wellbeing of you child.