By Louise Kinross
A fascinating document on the role of hope in children's rehab caught my attention.
“Offer hope training to clinicians” is one of three recommendations by the Parenting Matters research team at the Centre for Research on Children and Families at McGill University in Montreal.
Parenting Matters, funded by the Canadian Institutes of Health Research, is studying what it means to parent a child with a disability like autism, Down syndrome or cerebral palsy.
The recommendations for bringing hope into care are based on feedback from 87 parents, clinicians, managers, researchers and policy-makers at a 2014 symposium for the Canadian Network of Children and Youth Rehabilitation and the Canadian Family Advisory Network.
-Create opportunities for discussion about parent and child hopes where families feel listened to, respected, and supported
-Offer hope training to clinicians
-Align service provision with family goals, needs and hopes
Before drafting the strategies, participants heard about findings from a doctoral study on parent hope by researcher and social worker Sacha Bailey.
Sacha suggested that the idea that "parents who are hopeful are in denial" was a myth. "I showed that parents are quite grounded in the realm of what is possible with their hopes,” Sacha says. "Every family is unique. To assume that what one family hopes for is what all families hope for is not helpful. Hopes shift over time and are often about establishing a new normal."
Participants then broke into small groups where they developed ideas on how to integrate hope into their work.
BLOOM: Why is hope important in understanding parents raising kids with disabilities?
Sacha Bailey: My interest comes from my clinical experiences. Initially I worked with adults with intellectual and developmental disabilities in a community setting. Then when I went back to study to be a social worker, as a student I had lots of experience working with families of younger children with neuro-disabilities and I started to notice that despite their kids' challenges, these families displayed a lot of resilience.
BLOOM: As a parent, I know hope is an awkward topic that can cause tension between parents and clinicians. On the one hand, I've always said that if parents didn't have some hope, they couldn't carry out the gruelling therapy expected of them. On the other hand, as a parent who got stuck on hope for years and years and years, for something that wasn't in the cards for my son, I can only imagine how frustrating it might be for a clinician. I've often thought about what someone could have said to me so that I might have gone up the learning curve faster with my son, so that we weren't spending an inordinate amount of time focused on something he couldn't do.
Sacha Bailey: It is an awkward topic. One reason I chose to do my doctoral study was to understand from the perspective of parents what did it mean when a parent said 'I want more hope' or 'I'm looking for hope' or 'That doctor gave me hope.' Since presenting my findings to working groups, I've been given a lot of good feedback that helped me recognize the tensions around how clinicians understand hope and how families do. Clinicians often bring up the idea of not wanting to give false hope and being a little tentative about giving or encouraging hope.
BLOOM: What are the main ideas about how clinicians can make their practice more hopeful?
Sacha Bailey: To me, the biggest finding from this activity was creating opportunities for conversations about parent hopes. It's as simple as asking parents 'What do you hope for the future for your family and your child?' And also asking the child. It gets back to family-centred care. It's easy to get away from that when each professional has a different focus. We want them to think bigger picture.
BLOOM: So do you mean maybe ask a question about 'what kind of life would you like your child to lead?' as opposed to 'how many steps can he take?'
Sacha Bailey: Even if the parent says 'I hope my child will walk' and in the clinician's mind it's not a realistic goal, that opens up a conversation: 'this is your hope, this is my perspective.' Parents tell me that having the conversation is more important than whether the goal is obtainable.
BLOOM: As a parent I sometimes cut clinicians out who told me something wasn't possible for my son.
Sacha Bailey: For the parent who wants their child to walk, for example, and won't take no for an answer, I think the answer is to continue the conversation. 'What else do you hope for? If your child doesn't walk, how does that change your hope for the future? Are there other ways he can participate that don't involve walking but would still make the future bright?' Instead of getting stuck in the goals of a particular discipline, this opens up the conversation to think a little bit more broadly. Instead of pushing for a specific function, it's about how can the child participate in life activities.
BLOOM: I know some parents say that their child's rehab goals don't necessarily translate into something that improves their daily life.
Sacha Bailey: It's a quality of life issue. Sometimes we come up with these goals without asking the child or the parent. Ultimately, is this going to help you? Is this going to increase your quality of life? Hope is a part of life. Does this child have hope for the future?
BLOOM: We know that parents of kids with disabilities are at greater risk of experiencing mental and physical health problems. Is it possible that hope mediates these problems?
Sacha Bailey: Parents of kids with disabilities have higher levels of stress, depression, anxiety and health problems compared to other parents. When you look at the literature on hope, where they measure hope, it certainly does act as a resilience factor and seems to mitigate negative outcomes. Parents who report more hope also report less depression, anxiety, stress and better coping than those who report having less hope.
BLOOM: How would 'hope training' be offered to professionals?
Sacha Bailey: The idea first came up when people talked about integrating it into curriculum of any program that has clinicians who will work in pediatric rehab. But it also has to be part of continuing education. As a clinician working within difficult systems, it can be frustrating and you can get discouraged, and clinicians need hope sometimes. Continuing education could be an interdisciplinary workshop or grand rounds. These are opportunities to bring clinicians together to talk about how we can help our families be more hopeful in our practice.
Sacha Bailey is research coordinator at the Centre for Research on Children and Families at McGill University in Montreal. She is also a doctoral student in the School of Social Work at McGill.