Hélène Lefebvre

Differences and similarities between mothers’ and fathers’ experiences of parenting a child with a disability:

This qualitative study used focus groups to identify the differences and similarities in the experiences of parents of children with a disability. Two main themes emerged, showing the ways in which the mothers and fathers are alike or different. One concerns roles, actual and expected, in the various subsystems of family life. The other concerns the normalization and stigmatization that arise because of the child’s problem. Mothers tend to score better interms of interpersonal and group communications. It would seem that the fathers’ expectations are harder to fulfil than the mothers’. The fathers’ expectations are attuned to the outer world; the actual day-to-day tasks related to the child’s care are not their priority. The mothers are less demanding and their expectations are more self-focused. Interestingly, these families are similar to families of children without a disability; however,the difficulties they experience are accentuated by the presence of a child with a problem.

The experiences of individuals with a traumatic brain injury, families, physicians and health professionals regarding care provided throughout the continuum

Primary objective: To investigate the experiences of individuals who had sustained a traumatic brain injury, their families and the physicians and health professionals involved, from the critical care episodes and subsequent rehabilitation. Research design: Semi-structured interviews were conducted with individuals who had sustained a TBI (n = 8) and their families (n = 8) as well as with the health professionals (or service providers) (n = 22) and physicians (n = 9) who provided them care. Main outcomes and results: Results revealed the difficulties encountered by the different people involved, from the standpoint of the readjustment of the individual with the TBI and their family, the relationships among the various actors and the continuity of care. Conclusions: This study brings to light the importance of including the family and the person with a TBI in the care process by calling for their participation and by setting up suitable structures that prioritize a meaningful partnership among the key individuals.

Perspectives of survivors of traumatic brain injury and their caregivers on long-term social integration

Background: Traumatic brain injury (TBI) has damaging impacts on victims and family members’ lives and their long-term social integration constitutes a major challenge. Purpose: The objective of the study was to document the repercussions of TBI on victims’ long-term social integration (10 years post-trauma) and the contribution made by the services received from the point of view of TBI victims and family caregivers. This article examines the determinants of long-term social integration as well as the impact of TBI on family caregivers. Methods: A qualitative design was used (semi-directed interviews). The sample consisted of 22 individuals who had sustained a moderate or severe TBI and 21 family caregivers. Results: The results show that TBI is an experience that continues to present difficulties, even 10 years after the accident, and that different barriers contribute to this difficulty: not going back to work, depressive episodes, problems in relationships and sequellae. Family caregivers must help TBI victims confront the barriers in their path. Implications: This study adopts a longitudinal perspective to help professionals determine how to intervene with TBI victims and their families. It validates the importance of having clients and family caregivers describe their reality.

Gender differences and simililarities in the experience of parenting a child with a health problem: current state of knowledge

The birth of a child is a transitional situation that triggers stress in the family and each person has to use adjustment strategies allowing them to reposition gradually in relation to themselves and other members of the family, and to make space for the new arrival. When the child has a health problem, the stress on the parents is correspondingly greater. Research shows that fathers and mothers of a child with a health problem experience this ordeal differently. This article reports on the current state of knowledge about the experience of fathers and mothers of a child with a health problem, and suggests new directions for research to provide a fuller understanding of their experience.

Perspectives of adolescents and their parents regarding service needs following a mild traumatic brain injury.

Primary objective: Various guidelines have been developed to implement coherent and uniform management of persons with a mild traumatic brain injury (mTBI), but those have typically been developed for adults or children and may not address or meet the specific needs of adolescents. The purpose of this study was to explore the specific service needs of adolescents (12–18 years) after a mTBI. Study design: Qualitative phenomenological study. Methods and procedures: Individual semi-structured interviews were conducted with 15 adolescents and their parents who had received different levels of care from paediatric trauma centres within the previous 12 months. Main outcomes and results: All adolescents and parents expressed the need to receive information about the injury, its expected recovery and when to return to activities. Many adolescents reported wanting to be seen rapidly, by professionals who genuinely care about them and who acknowledge that they have specific needs that differ from those of younger children. Parents and, to a lesser degree, adolescents think that enhanced communication between the healthcare and school systems would be beneficial following a mTBI to assist in returning to demanding academic activities. Conclusions: Professionals involved in the management of adolescents with mTBI should be aware of their needs in order to provide optimal and developmentally appropriate services.

Parental satisfaction with an early family intervention program.

The objective of this study was to evaluate parental satisfaction with a family intervention program. The program provides help and support for parents with newborns who have specific health problems (eg, cleft palate and/or lip; Down syndrome). Four family subscales, personal (emotional and cognitive), marital, parental, and extended family and others, were examined. The majority of parents were satisfied with the intervention. Most felt that the intervention had helped them to adapt to the unexpected situation. They received guidance in discerning and discussing their own emotions and those of their partner or spouse, and the help they received gave them confidence about the care their child would receive. Results revealed significant differences in satisfaction levels (depending on the sex of the parent), the childs diagnosis, and annual income. Mothers of newborns with Down syndrome were more satisfied than fathers with the personal-emotional support they received. Low-income families were more satisfied than those with higher incomes for all subscales. On the parental subscale, those whose child had a cleft lip/palate were more satisfied than those whose child had Down syndrome. The results raised several important questions about this type of early intervention program, which will require further in-depth investigation.

Breaking the news of traumatic brain injury and incapacities

Primary objective: This paper presents research results regarding disclosure of traumatic brain injury (TBI) diagnosis and resulting deficits of a study aiming to investigate the experiences of individuals who had sustained a TBI, their families, the physicians and health professionals involved, from the critical care episodes and subsequent rehabilitation. Research design: Semi-structured interviews were conducted with individuals who had sustained a TBI (n = 8) and their families (n = 8) as well as with the health professionals (or service providers) (n = 22) and physicians (n = 9) who provided them care. Main outcomes and results: Results revealed that the quality of the disclosure is strongly influenced by the medical uncertainty surrounding the TBI and the difficulties of healthcare professionals in dealing with the familys emotions. Conclusions: Delivering bad news is always difficult, but it is possible to make this harrowing experience easier and, in so doing, enhance patient and family resilience.

The close relatives of people who have had a traumatic brain injury and their special needs

Primary objective: This study aims to paint a picture of the needs of people close to individuals with a TBI and the services offered to answer these needs, from the point of view of the individuals with a TBI and health professionals. Research design: This study has a qualitative design and a reflexive group was used to collect data. The démarche réflexive d’analyse en partenariat, DRAP (developing reflexive analysis for partnership) was used as a data collection method. The sample comprised Montreal family members (n = 4), Outaouais family members (n = 8), Abitibi family members (n = 7); Montreal care providers (n = 9), Outaouais care providers (n = 11) and Abitibi care providers (n = 9). Main outcomes and results: The results show that people close to individuals with a TBI need information on the health problem, specifically with regard to the diagnostic, the prognostic, and the factors that influence it, as well as the steps towards rehabilitation, and care and services. The results show that close ones need specific, quality services and continuity of services. Conclusion: In conclusion, the pertinence of this study lies in the desire of close ones and health professionals to ease the adaptation process imposed by a TBI, and to promote the well-being of informal caregivers.

Social inclusion of persons with moderate head injuries: The points of view of adolescents with brain injuries, their parents and professionals

Primary objective: This study explores the perceptions of adolescents, their parents and professionals as to the social inclusion of adolescents who have suffered a moderate traumatic brain injury (TBI). Research design: Exploratory descriptive qualitative study. Methods and procedures: Semi-structured interviews were conducted with three adolescents who had suffered a moderate TBI and with their parents. In addition, a focus group was conducted with four professionals. Main outcomes and results: The results show that the perceptions of adolescents, as well as their parents, affect different aspects of their lives, such as the adolescents personal experiences, the family, friends, the environment and school. A great number of repercussions were indeed noted, which facilitate and sometimes limit the social inclusion of these adolescents. In general, the professionals shared the same perceptions, but added some ideas that did not come up in interviews with the adolescents and their parents. Conclusions: The results of this study should enable health professionals to better understand the social inclusion experienced by these people. They should also provide professionals with guidelines on how to better support the social inclusion of adolescents with TBIs and help families cope with this difficult situation.

Identifying the specific needs of adolescents after a mild traumatic brain injury: A service provider perspective

Primary objective: To identify the specific service needs of adolescents with mild traumatic brain injury (MTBI) and those of their parents through the perspective of expert service providers as well as to compare it to the perspective of adolescents and their parents obtained in a prior study. Study design: Qualitative design including a focus group held with experts in the field of adolescent TBI and a validation survey of other professionals. Methods and procedures: Eight experts from a variety of disciplines participated in a focus group where important needs of adolescents were discussed. Results were then validated through a questionnaire to 33 professionals. Main outcomes and results: Experts questioned through both methods are generally in agreement and acknowledge that adolescents are unique, but they often find them challenging. Like adolescents themselves, experts identify the need for information as the most important but are wary of offering too much detail and fear that this could encourage malingering of symptoms and problems. Service providers also recognize the importance of supporting adolescents and parents when returning to activities (school and physical activities). Conclusions: The notion that teens represent a specific group of consumers of healthcare services is supported by findings in this study. These results provide important information to those involved in the structuring of service provision to adolescents following MTBI.