The respite effect
Essential. Crucial. Vital. This is how the families of seriously ill children describe our respite services—and it is at least one of the observations revealed by the research conducted by Suzanne Mongeau and Manon Champagne following their long-standing and close collaboration with The Lighthouse.
In early 2000 we approached Mongeau, a PhD and professor at the UQAM School of Social Work, for help in creating our in-home respite program. In 2002 Champagne, then a doctoral student and now a PhD and professor at the UQAT Health Sciences Research and Teaching Unit, teamed up with Mongeau as a research assistant. In the years that followed, they carried out participatory research projects both on the in-home respite care provided by Lighthouse-trained volunteers and the respite care offered at Maison André-Gratton.
Pediatric palliative respite care, which is part and parcel of the definition of pediatric palliative care set out in the Québec Standards of Practice for Pediatric Palliative Care, differs from adult palliative care in that the role of caregiver extends over a much longer period due to the longer life expectancy of children. The intense and demanding long-term involvement also has major impacts on the lives of families who often face financial pressures, isolation, and physical and psychological health problems. The Lighthouse strivesdaily to demystify pediatric palliative care vis-à-vis adult palliative care and promote anapproach that ensures the highest quality of life possible for children, namely by supporting all family members and advocating for the specific needs and interests of children and families.
The research results of professors Mongeau and Champagne show that the in-home respite care provided by Lighthouse volunteers gives parents the peace of mind they need to take a momentary break from their care role. Parents also reported sharing the joy of their children playing and having fun with volunteers. It is comforting and healing for them to get recognition for their parental expertise and have their voices and choices heard and listened to. It fosters a feeling of a kind of social recognition that breaks their isolation.
Maison André-Gratton: Uncompromising Respite Care
Based on their research on in-home respite care, professors Mongeau and Champagne concluded that although essential, in-home resources are insufficient to meet some of the needs Maison André-Gratton has been able to serve, in particular through its full respite care stays.
Mongeau and Champagne first found that the disabilities and diseases of children staying with The Lighthouse, Children and Families are often more serious and severe than those of children receiving in-home respite care. They also found that the home’s warm, normalizing environment and very high quality of care are very much appreciated by families.
Parents say the professional services at Maison André-Gratton help them overcome separation anxiety, boredom, and guilt, and that the responsiveness and understanding of Lighthouse professionals in dealing with these emotions helps them entrust the care of their children with confidence and peace of mind.
We see respite care more as the culmination and outcome of a series of support measures than as a service in itself. For example, parents can only achieve respite if they have peace of mind. The term “respite effect” therefore encompasses both the break from demanding and restrictive responsibilities and the healing impacts. With our interdisciplinary team and comprehensive care approach based on recognized pediatric palliative care standards, we take the respite effect into account in developing our stay and support services.
Lighthouse practices such as the first 24-hour stay as a family, the Maison André-Gratton orientation guide, and telephone followups help put parents at ease. And parents describe the quality of the ties forged between their families and our team members as unique in their dealings with the health system.
An Impact on Families’ Well-Being
Professors Mongeau and Champagne found that respite benefits families considerably, especially children, who can forget about their illness for a while and get out of their often exclusive relationship with parents. Mothers and fathers enjoy a few nights of restorative sleep, while brothers and sisters reconnect with their parents through family activities and outings. More generally, respite stays help families maintain their conjugal, family, and friendship ties, and feel less marginalized.
Mongeau and Champagne believe the extent of families’ satisfaction with our respite care resources has to do with how our services are tailored to the needs of each child and how open and attentive our staff is to family expectations.
This year Champagne and Mongeau’s work culminated in the launch of Le soutien aux familles d’enfants gravement malades, co-edited with Lyse Lussier. This book, published by Presses de l’Université du Québec, summarizes the findings of their research and other Lighthouse projects over the years. One of the only French-language publications on pediatric palliative respite care, it affirms that thanks to the special bond they developed with The Lighthouse, Mongeau and Champagne have broken new ground in the field and contributed to the creation of essential, crucial, and vital respite services for sick children and their families.
- Suzanne Mongeau et Manon Champagne