Diane Pelchat

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.

Longitudinal effects of an early family intervention programme on the adaptation of parents of children with a disability

This study assesses the longitudinal effects of an original early intervention programme on the adaptation of parents of children with a disability (Down syndrome and cleft lip/palate, i.e. DS and CLP). Variations in the effects of the programme according to the time of measurement, the type of disability and parents gender are also examined. Globally, the results show a better adaptation among parents who participated in the intervention programme compared to those who did not participated in the programme. These parents had lower levels of parental stress, they had more positive perceptions and attitudes concerning their childs disability and their parental situation, they were more confident in their own resources and the help they could receive from others, they had lower levels of emotional distress, anxiety and depression and they perceived more emotional support from their spouse. In general, these gains were maintained throughout the year when the children were between six and 18 months of age, they were relatively similar for parents of children with DS and parents of children with CLP, as well as for mothers and fathers.

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.

how do mothers and fathers who have a child with a disability describe their adaptation/ transformation process?

This qualitative study explored the adaptation/transformation process in mothers and fathers at the individual, parental, marital and extrafamilial levels, and the similarities and differences in their experience of living with a child with cerebral palsy. Interviews were conducted with 13 mothers and 13 fathers of children with cerebral palsy. The results show that mothers and fathers are more likely to view the situation differently than similarly. For both parents, the situation offers the potential for transformation. Complementarity between mothers and fathers is an important factor in each of the adaptation or transformation subsystems. Both parents embark on a journey that changes their beliefs about difference, apply their new knowledge to every aspect of their life, and endeavour to normalize their situation.

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.

PRIFAM: a shared experience leading to the transformation of everyone involved

This article presents the PRIFAM, an interdisciplinary family intervention program co-constructed with parents of children with a disability. The PRIFAM’s theoretical foundations, clinical model of the adaptation/transformation process and tools have enabled professionals to conceptualize many years’ worth of research, clinical observations, and professional and personal experience. Through its relational foundations, the partnership forged between families and professionals contributes extensively to the adaptation of families and the well-being of professionals, by acknowledging their reciprocal resources and mutual competencies. The birth of a child with a disability triggers severe stress and plunges parents and families into a grieving process, but this process also leads to learning that generates transformation of the bereavement experience. A number of evaluative studies of the PRIFAM have demonstrated the importance of the close reciprocal relationship between research and clinical practice, which enables family intervention practices to evolve.