[The experience of uncertainty of fathers and mothers in the process of the announcement of cerebral palsy of their children]. / L'expérience de l'incertitude chez les pères et les mères dans le processus de l'annonce de la déficience motrice cérébrale de leur enfant.

This qualitative research shows differences and similarities between mother and father's experience of incertitude in the process of the announcement of the cerebral palsy and the adaptation strategies used. Interviews have been conducted with 17 parents (10 mothers and 7 fathers). Results of the research reveals three main triggering factors of incertitude: incertitude in regards with the survival of the child, the unpredictability of the evolution of the child and the ambiguity of the information regarding the cerebral palsy Triggering factors of the incertitude are the same for both parents but their reactions towards the these factors and their way of coping with the situation vary.

Nature, sources, and impact of information on the adjustment of family caregivers: a pilot project.

The information conveyed to patients and families dealing with a health problem such as traumatic brain injury or stroke combines with what they already know to form a new pool of knowledge. The aim of this pilot study was to describe the information needs of family caregivers, their sources of information, their strategies for gathering information, and the impact of the information on their adjustment and their relationship with health professionals. Focus groups were held with close relatives of persons who had sustained a traumatic brain injury or a stroke and with health professionals from various disciplines working with theses clienteles. The information needs of relatives concerned the impact of the person's disabilities on their everyday lives. From the professionals' point of view, the information needs of close relatives concerned the person's disabilities, their coping strategies, and their information sources. Life experience was the main source of knowledge. The results form a basis for recommendations regarding interventions in acute care and rehabilitation.

[Information needs of families of children with a disability: the viewpoint of parents and health professionals]. / Besoins d'informations des familles d'enfants ayant une déficience: point de vue des parents et des professionnels de la santé.

This preliminary study aimed at documenting the needs of families having a child with a disability concerning information, from the point of view of both parents and professionals involved with them. Three discussion groups were carried out: two with parents of children with Down's syndrome or cerebral palsy, and another group with health professionals involved with them. The results show that the parents are searching for information concerning the initial health problem, the available health care and other resources that might be of help. Sources of information for parents include the health care professionals, other parents within a similar situation, the media and the Internet. The obtained information influences the parents' adjustment over their child's health situation and also impacts the relationships they have with the health care team. Some recommendations regarding intervention are proposed.

Gender differences and similarities 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.

Interdisciplinary family intervention program: a partnership among health professionals, traumatic brain injury patients, and caregiving relatives.

Throughout the delivery of care after traumatic brain injury, the type of relationship that develops between the family and the professionals has a major effect on the day-by-day adjustment of traumatic brain injury individuals and their relatives. Seventeen health professionals from different disciplines working with the traumatic brain injury clientele at different stages of the continuum of trauma care underwent training in the form of e-learning to apply the Interdisciplinary Family Intervention Program, or PRIFAM. The study methodology was mixed: participants' evaluation of the PRIFAM training was assessed through a quantitative questionnaire, whereas their experience and learning were documented in semiguided, qualitative interviews conducted before and after training. The results show that the training stimulated personal and professional reflective thought in participants and fostered the forging of an interdisciplinary partnership. The training had a positive impact on communication between professionals and with the families and helped to develop a sense of self-efficacy among health professionals.

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 in terms 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.

[Partnership and renewal of a educational paradigm in nursing sciences]. / Partenariat et renouvellement du paradigme éducatif en sciences infirmières.

The Program of Interdisciplinary Family Surgical Procedures (PIFSP), is oriented towards the development of partnerships between families and nurses in order to respond to the specific needs of families with children suffering from health problems. It was implemented by the accumulation of information and expertise respective of the other and in regards to their relevance. A retrospective qualitative study on apprenticeships conducted with parents and nurses during a proposal by PIFSP shows at what point parents' and nurses' educational conduits are linked to faith, thought patterns, perception and behaviour, which corresponds to a specific conception of educational medical procedures in nursing science. This is part of the paradigm structure in educational and nursing science.

[Parents' satisfaction at the birth of a handicapped child following a family intervention]. / Satisfaction de parents à la naissance d'un enfant ayant une déficience lors d'une intervention familiale.

The aim of this study is to estimate parents' satisfaction following a surgical procedure on their child. This includes support as well as additional information and documentation for the individual parent (cognitive and emotional), conjugal, parental and other family members. The majority of parents are satisfied with the treatment program, realizing that the treatment enables them to adapt to their new situation, that is, as parents of a newborn child suffering from health problems. This support allows them to recognize and talk about their own fears and emotions as well as those of their partner, to be reassured when facing their child's treatment, and to better understand the available resources. The results of the study show that there are significant differences in regards to the sex of the parent, the diagnosis of the child and the level of income. Mothers of children inflicted with Down's syndrome are more emotionally satisfied with the treatment than fathers, and lower income families are more satisfied with the treatment as well as with the sub-system of family health-care than middle and upper-income families. Parents of children with a labial and/or palatine cleft are more satisfied with the treatment in regards to the family plan than parents of children with Down's syndrome. These results raise several questions that, with more profound deliberation on the adequacy of early medical procedures with regards to the parents of children with health problems, shall not be overlooked. Let us highlight the heuristic qualities of this evaluative approach which possess the same relevance as the questionnaires developed in order to assess the families' satisfaction. After modifications, these questionnaires could eventually be used on different clientele as well.

[Cranial-cerebral trauma after a traffic accident: perceptions of patients, family, physicians and professionals]. / Le traumatisme crânio-cérébral suite à un accident de la route: les mots des personnes, des familles, des médecins et des professionnels.

This is a study of medical care when road accident incidents result in traumatic brain injury (TBI). We investigated the personal perceptions of those involved in acute care episodes and subsequent rehabilitation. We conducted simultaneous semi-structured interviews with individuals who had sustained a TBI (8) and their families (8). We then conducted semi-structured individual interviews with the professionals (22) and physicians (9) who attended them. Results reveal the difficulties encountered by the different people involved, from the standpoint of the rehabilitation of both the person who with the TBI and their families, the relationships among the various actors, and the continuity of care. The results disclose the importance of including the family and the TBI casualty in the care process by endorsing their participation and by setting up suitable structures that prioritize a meaningful partnership among the individuals, families, physicians, professionals and health care organizations and in which each person can play a role as an agent in the care of the person with the TBI. An important element, which came out again in our results, is that the shortage of information provided to the families can jeopardize establishing a relationship of trust among the actors. Furthermore, many of the family members were upset that the health intervention was entirely focussed on the TBI casualty: none of the professionals were concerned with what the families were going through, either during the acute care or rehabilitation. Another major problem is lack of communication, not just amongst the professionals, but also between institutions which seem to function in isolation. Lack of resources, the limited availability of those that are offered, and social policies are also detrimental to the reintegration of the TBI individual into the community. Finally, many of the professionals reported that they had not been trained to assist families in this situation.

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.

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.

A holistic intervention programme for families with a child with a disability.

BACKGROUND: The birth of a child with a disability may cause serious stress for the parents and affect each member of the family. Parents need support to deal with such a situation; however, health care professionals themselves are not always well equipped to help them and often adopt an attitude of withdrawal. AIM: The aim of this paper is to describe a family intervention programme developed in collaboration with families who were adapting to the birth of a child with a disability. DISCUSSION: The primary purpose of the programme is to help family members adapt to the situation in which they suddenly find themselves, primarily by reducing stress. The family's autonomy and competencies in providing care for the child are promoted and called into action. The programme encompasses different aspects of family relations: the individual, marital, parental, family, extended family and non-family sub-systems. Its theoretical foundations, clinical experience with families of a child with a health problem, and our previous research have enabled a remodelled vision of the way individuals and families adapt to such a situation. CONCLUSION: The symbioses of the design of the programme, training in its application, and intervention itself have transformed families of a child with a disability as well as the nurses themselves. The key element of this transformation has been the mutual recognition of relevant skills and authority by families and health care professionals that has led to new competencies, self-determination and an individuality that may change their lives.

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 (e.g., 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 child's 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.