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'In the absence of care, medicine is dehumanizing'

By Louise Kinross

Medicine is made up of two things: treatment and care.

But patients and clinicians alike are suffering from a devaluing of care in the health system, says Kristen Slesar, a psychotherapist who works with trauma survivors. Slesar, who supports child witnesses at the Bronx District Attorney's Office, was speaking at a three-day narrative medicine workshop at Columbia University in New York.

Treatment is the science side—the technology, the medication, the hospital bed,” said Slesar. Medical competence has become about how many machines and tests and things we can apply. Patients need treatment. But what happens when treatment fails or the patient dies? What happens when there is no treatment?”

The other side of medicine is caregiving—“the efforts to make someone feel physically comfortable or emotionally accepting of pain or imminent death,” Slesar said. “Care is about the inbetween moments—it's about how treatment is delivered." 

The best care happens when a clinician attends to and honours the patient's story in a way that makes the person feel understood. “Suffering is not a neutral experience,” Slesar said. “There's nothing neutral about life-changing illness or injury or the shame, stigma, fear, hope, doubt and dread that go with it. Interventions [by clinicians] are either positive or negative. If the encounter doesn't add to healing, it's hurtful. In the absence of care, medicine is dehumanizing.”

Patients are consistently unhappy, Slesar said, not with the results of their medical treatment, but with the experience of receiving treatment without care.

Care—which demands authenticity and vulnerability on the part of the clinician—is given short shrift in our medical system, Slesar said. Offering care is equated with consumption of time and providers are forced to see more patients than is fairly and equitably justifiable. When the quality of interaction with patients is seen as a function of time spent, and there is no time, good medicine isn't consistently offered.”

In addition, caring for patients is construed as “crossing into 'emotion land'as unprofessional and subjective, as if by being authentic and compassionate we compromise our smarts and whatever we learned in medical school [flies] out the window. We deny that we are real people who are just as permeable as our patients.”

Doctors are encouraged to stay emotionally detached as a way of protecting their mental health, Slesar said.

Burnout causes mistakes and is incredibly common and is something people don't want to talk about,” said Slesar. “Burnout is a major cause of poor healthcare delivery. It's the cause and symptom of significant damage and suffering, not just in patients but in [clinicians].”

Not only are sterile medical interactions bad medicine for patients, but they hurt physicians, Slesar said. “Physician satisfaction comes from relationships with patients.

But to have rich relationships with patients, doctors need to be able to think and talk about their own emotional reactions to working with people who are suffering.

Just as patients need a clinician to witness and help them find meaning in their experience, “we need to acknowledge who we are and what we do as providers. We need to be able to voice these doubts and fears: the sadness of the first death certificate, the embarrassment of not knowing an answer on rounds. We're loathe to talking about our fears and mistakes. We can't sit with uncertainty or fallibility.

Writing groups for clinicians are a forum for “giving and receiving testimony, which isn't about the facts, but about the experience and the emotion” of practising medicine. “It's that we do it together,” Slesar said. “One person reaches out for a way to express and the other reaches towards to bring it in and let the person know they are not alone.”

In narrative medicine, participants read and discuss a passage from literature, then respond to a writing prompt, writing for three to five minutes. Those who are comfortable read their pieces aloud. “We hold pieces of writing out in front of us in this loving, benign ritual,” Slesar said. “We don't focus on the quality of the writing. We write about ourselves, and even if the question is about our practice, the writing is self-revealing and self-creating. We see things differently and we see different things.”

Unfortunately, efforts to 'care for the caregiver' like this are often pathologized, Slesar said. “You're accused of being weak. Or maybe you're not cut out for the job. And when you do take time to take care of yourself you feel you're being indulgent. Self-care may even be construed as immoral.”

Given the high rates of physician burnout and suicide, “nothing is more needed than nourishment for the imagination,” Slesar said. “What quality of clinician do you want to be? How can we go from the current state of affairs to something better?”

Medicine done well is a “co-construction between patient and provider, a giving and receiving. The patient ceases to be an injury or illness and becomes a person because we are a person. There is an openness to suffering by both participants.”

Should kids be asked to care for a disabled sib?


This is the author's note to Pillow: A sibling story, which was written by Sophia Isako Wong. Sophia has a 40-year-old brother with Down syndrome. She is an associate professor of philosophy at Long Island University in Brooklyn, New York. She writes about political and educational inclusion for people with cognitive disabilities and justice within family relationships.

I wrote this story to illustrate how typical siblings may feel when they provide “respite care” for their parents. Research shows that parents often believe that their children are emotionally mature enough to recognize their own developmental needs and to speak up for themselves. One parent said, “I know if it’s too much for her she’ll tell me.”

Let me tell you a secret: we sibs don’t tell our parents how we truly feel. Our motto is “Never mind me; you have enough to deal with. I’ll figure it out by myself.” If our behaviour seems untroubled and serene, that’s because we are experts at hiding our worries, resentment, envy and nightmares.

In families untouched by disabilities, sisters and brothers fight, argue, sulk and express the whole spectrum of feelings toward each other. In our families, we never get that opportunity. With our sibs, it is never a fair fight. Even if we have a just cause, the disabled child usually gets the lion’s share of our parents’ attention and sympathy.

We’ve learned through experience that we are rewarded with positive attention from parents for being the easy child, and sometimes reproached for making more trouble for you. So we often help you without complaining.

We watch you every day. We see that parents have far too much to do, resources are lacking, and there aren’t enough hours in the day.

When we notice how exhausted you are, we fear that you won’t be able to take care of us adequately, or you might have to quit your jobs, and where would we be then? So we volunteer to give you a break, thinking this will help the whole family survive. “Parentification” is what happens when children perform the role of parent at the expense of their own developmentally appropriate needs and pursuits. When children take on responsibilities performed more appropriately by an adult, they feel torn between looking after the vulnerable sibling and taking care of their own needs.

If a child or teenager (mistakenly) perceives that his needs are less important than the needs of others in the family, he may volunteer to sacrifice time and energy he would otherwise devote to school, friendships and typical childhood activities.

Research shows increased risk of psychological and social problems in some siblings who are burdened by excessive caregiving roles and who, in effect, become ‘little parents.’

Here’s the good news: the whole family benefits when parents take breaks from the exhausting work of caring for a child with disabilities. Parents need to take care of their own health by asking support staff, neighbours, friends and family members to help out. Doing so gives them precious time to rest and recover from the stresses of parenting a child with disabilities.

Even if your typical child is eager to babysit, and is supremely confident she can handle it, please make sure an adult is supervising her at all times. That way, she doesn’t have to function as an adult before she is ready. By helping but not being in charge, typical children can continue to focus on what they need to be healthy and safe.

Trust me, we siblings of kids with disabilities feel intensely guilty whenever we play with other kids, master skills that the disabled sib will never learn, or pass for normal in a crowd. We’re acutely aware that we are very lucky to be non-disabled, and that we might have been born in the disabled sib’s shoes.

Some of us are forever trying to make it up by being on our best behaviour, concealing our negative feelings and accepting more than our fair share of household chores. Many of us see ourselves as Super Sibs: born to babysit. You may even believe that we are more high-functioning and more emotionally mature than other kids our age. Don’t be fooled: we are kids with the same concerns and complex emotions as other young people.

So if your child volunteers to babysit before she has become a competent adult mature enough to have her own children, I hope you’ll think of Pillow and Sister and say: “No, honey, go ahead and play. We’ll hire a babysitter, use respite, or ask other adults to help us when we need a break.”

What stresses parents of special-needs children?



A new study provides some unexpected results

Parenting kids with disabilities is stressful. But sometimes pulling apart what elevates parent stress, and how factors related to different types of disability contribute to parent stress, is trickier.

In a study published in the journal Autism this month, moms of preschoolers with autism reported significantly higher levels of parenting stress and psychological distress – general worry and anxiety – than moms of preschoolers with developmental delay (which was generally of no known cause).

“We wanted to find out what was driving the higher levels of distress in the moms of children with autism, and measured the impact of children’s problem behaviour and decreased daily-living skills,” says Annette Estes, lead author, clinical psychologist and associate director of the Autism Center at the University of Washington.

In both the autism and developmental delay groups, researchers found problem behaviour was associated with increased parenting stress and psychological distress. But to their surprise, children’s need for greater physical care – in areas like feeding, dressing, toileting and bathing – was not.

“I expected that both together would be related to stress, but the study shows that it isn’t the hard work of caregiving that’s stressful,” Estes says. “Parents seem to be resilient to the hard work – and also to comparing their kids’ daily-living skills to other kids’ skills.”

Estes says the study points to the need to target difficult behaviour – no matter what the diagnosis – as a top priority in early intervention. “Autism affects every domain of functioning, and yet you can’t do everything at once. If you have a child with problem behaviour, that should rise in terms of priority of treatment – because not only will it help the child, it will help the family.” Problem behaviours measured in the study included irritability, hyperactivity, crying, inappropriate speech and not being able to follow rules.

A third somewhat unexpected finding of the study was that the relationship between problem behaviour and stress was less pronounced in the group of moms whose children had autism.

“While the overall stress levels on both measures were higher in moms of children with autism, the relationship between problem behaviour and stress was stronger in the moms of children with developmental delay,” Estes says. “Problem behaviour still accounted for quite a bit of stress in the moms of children with autism, but it doesn’t explain the whole picture.”

More study is needed, she says, to identify other factors that contribute to high stress in moms of kids with autism. Is it the demands of intensive treatment? Is it public misperceptions about the disorder? Is it social deficits that make it harder for parents to connect with their child?

Stress in parents may also change over the lifespan, she notes, and this study only surveyed mothers of preschoolers. Fifty-one children in the study had autism and 22 had developmental delay without autism.

The families were part of a larger study of the neurobiology and developmental course of autism. “Many of the families have been involved in the study for 10 years and we’re starting to get a lot of longitudinal data that can help us answer some of these questions. I don’t think a lot is understood about how stress and coping work over the lifespan, and that’s the next step.”

What do you think of these results? Do you find coping with challenging behaviour in your child more stressful than physical caregiving? Click on Comments to post. If you’re a mom of a child with autism, what most stresses you?