Purpose: To analyze, from the parents’ point of view, the effects of respite services offered at a children's hospice, the Maison André-Gratton. Method: Qualitative methodology (participatory approach) using mainly semi-structured interviews with parents (25 mothers and 8 fathers). Thematic analysis of the data was done. Findings: Respite stays allow parents to get some rest, to feel liberated from the responsibility of taking care of their sick child for a few days, to focus on their other children and their life as a couple, and to break their social isolation. For siblings, the main benefits are having their parents to themselves and sharing activities with them. Conclusion: Two characteristics of the respite program contribute to the positive effects of respite on families — the high quality of the care offered by a qualified staff, and the adequate length of respite stays.

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I Participatory research is an approach wherein all parties concerned play an active role throughout the research process, from initial design to the interpretation and dissemination of results. This article reports on two participatory research projects evaluating a new in-home respite program for children requiring pediatric palliative care and their families. Some of the realities, benefits, and challenges resulting from a participatory approach to research in pediatric palliative care are described. The outcomes of these two studies highlight the conclusion that organizations, professionals, volunteers, and family members accompanying the dying benefit from a participatory research method that actively engages their involvement. This approach offers participants the opportunity to voice concerns as well as supports a sense of empowerment. From the researcher's point of view, a participatory process can serve to increase both the social relevancy and impact of the research. Resume I La recherche participative est une approche de recherche selon laquelle les acteurs ccncemes collaborent aux differentes etapes d'un projet, c'est-a-dire de la construction du protocole a I'interpretation et a la diffusion des resultats, A partir de I'analyse de deux projets de recherche portant sur I'evaluation d'un nouveau programme de releve a domicile, cet article decrit les benefices et defls resultant du recours a une approche participative de recherche en soins palliatifs pediatriques. II ressort des resultats de ces recherches que les institutions, tout autant que les professionnels, les benevoles et les proches accompagnant les personnes en fin de vie beneficient de leur participation a ce type de recherche qui les incite fortement a s'engager, car elle leur offre I'occasion d'exprimer leurs preoccupations et de s'approprier differents moyens d'action. Selon les chercheurs, ce processus participatif peut augmenter la pertinence sociale et I'impact des travaux de recherche.

Much improvement is needed to facilitate patient involvement in medical decision-making related to life-prolonging care. Prior research focuses mainly on the communication in the physician-patient dyad; few studies have identified how other professionals are involved. Using a Research Action design, two rounds of interviews with four interprofessional groups from various clinical settings of a health center in Quebec, Canada were conducted between 2009 and 2010. The 37 participants represented nine professions (nurse, dietitian, occupational therapist, orderly, pastoral worker, physician, physiotherapist, respiratory therapist and social worker). The first round of interviews confirmed that all of these professionals are involved, in various ways, in communicating with patients regarding their goals of care. Based on these results, the research group developed two communications tools (paper forms) to facilitate the documentation of patient care goals. The first form includes a designated area where all professionals can note patients' comments regarding decisions related to life-prolonging care. The second is a prescription form to document in the medical file the patient's goals of care. Both tools were submitted to, and fine-tuned by, the professionals in the second round of interviews. These results confirm that interprofessional collaboration to facilitate patient participation in goals-of-care decisions is both possible and valued.

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