Being the parent of a ventilator-assisted child: perceptions of the family-health care provider relationship when care is offered in the family home.

The number of medically fragile children cared for at home is increasing; however, there are few studies about the professional support these families receive in their homes. The aim of the study was to understand the meanings that parents had about the support they received from health care professionals who offered care for their ventilator-assisted child in the family home. A phenomenological-hermeneutic method was used. Data included the narratives of five mother-father couples living in Sweden who were receiving professional support for their ventilator-assisted child. The findings indicate that receiving professional support meant being at risk of and/or exposed to the exercise of control over family privacy. The professional support system in the families' homes worked more by chance than by competent and sensible planning. In good cases, caring encounters were characterized by a mutual relationship where various occupational groups were embraced as a part of family life. The findings are discussed in light of compassionate care, exercise of power, and the importance of holistic educational programs.

Family members' experiences of everyday life when a child is dependent on a ventilator: a metasynthesis study.

Children using mechanical ventilation for survival represent a small, but growing, vulnerable population in society. The aim of this study was to describe the existing qualitative research that examined family members' experiences when a child is dependent on ventilator at home. A metasynthesis is an interpretative integration of qualitative research findings based on a systematic literature search. Twelve original research reports focusing on the life situation of ventilator- and technology-dependent children and their families published between 1998 and 2006 were selected as data. Themes from the metasynthesis included experiences of the ill child, siblings, and parents and the meaning of space and place. These findings provide an understanding of the family members' experiences when a child is dependent on a ventilator for survival. Recommendations for future research with this population of families include a greater focus on professional support systems and family strengths and the use of longitudinal research methods using observation and interviews.

A meta-synthesis describing the relationships between patients, informal caregivers and health professionals in home-care settings.

AIM: The present study describes, through a meta-synthesis, the relationship between patients, informal caregivers and health professionals involved in home care. BACKGROUND: Today, many people receive help from health care professionals in their homes with the consequence that, for many health care professionals, their working place is the patients' homes. Research that addresses the dynamics in the caring relationship in home care seems to be rare. DESIGN: A meta-synthesis is an integrated interpretation of qualitative research findings, which is more substantive than the results from each individual investigation. METHOD: We performed a systematic literature search regarding studies published during the period 1992-2005, using the search terms home nursing, professional and home health care. The included studies described relations in a home care context, between health professionals and patients or relations between health professionals, patients and their informal caregivers published in the same study. RESULTS: The findings showed that when professionals entered people's home, the private area changed. The study presents an interpretation of the changed meanings of home as the place and space for professional care. We described the meanings of the relationship in two main themes with subthemes. The main themes are 'being there' and 'home care as a co-creation'. The understanding of relationships in home care is seen as the development of a professional friendship. This concept is reflected on through the writings of Aristotle and Alberoni. CONCLUSION: To address these concerns, it is important that home care providers, recipients and their family members develop friendships. These friendships should be a part of any professional relationship. RELEVANCE TO CLINICAL PRACTICE: When health professionals enter patients' homes, they have to be aware of the risk of transgressing borders of privacy. In addition, devaluing patients' or their informal caregivers' knowledge and their opinions about the care is interpreted as an exercise of institutional power.

A life enriching togetherness--meanings of informal support when being a parent of a child with disability.

The majority of children affected by disability are cared for at home by their parents. It is well documented in research literature that the parents are in need of professional support. In the striving to improve the professional caring, it is also important to deepen our understanding about the meaning of informal support from the perspective of parents' life world. The aim of this study was to illuminate the meanings of lived experience of informal support, when being a parent of a child affected by disability. Thirteen parents, eight mothers and five fathers within eight families, participated in narrative interviews, which were analysed by using a phenomenological-hermeneutic method. The meanings resulted in three themes: 'being gratified by experiences of the child as having a natural place in relation with others', 'being provided a room for sorrow and joy' and 'being enabled to live an eased and spontaneous daily life'. These themes emanated from the experiences of other persons' being and doing in relation to the parents, the child affected by disability and the siblings. According to our interpretation, informal support means a life enriching togetherness, the core of which is natural human caring. The findings also showed that parents highly valued professional support concerning informal supporters.

Being invigorated in parenthood: parents' experiences of being supported by professionals when having a disabled child.

The purpose of the study was to know the meaning of parents' experiences of being supported by professionals when having a child with disability. Data were obtained through unstructured interviews with 16 parents within 10 families and analyzed by a phenomenological-hermeneutic approach. Parents narrated experiences of being supported and not being supported, and the findings are presented as contrasting meanings. Being supported by professionals means gaining confidence as a parent and having the child seen as valuable. This is interpreted as being invigorated in parenthood, where sharing the mutual task and goal, which is the child's best, with professionals is a crucial aspect. The meaning of experiences of lack of support illuminates the consequences for the entire family's well-being and the struggle parents experience to gain confidence as parents and recognition of the child as valuable.

Being in tune with oneself, children, and parents: meanings of being a supporter to families with children who disabilities as narrated by parent-selected professionals.

The importance of giving professional support to parents who have a child with a disability is well documented in the research literature. Research from parents' perspective shows however that how support is delivered for an entire family's well-being is crucial. The aim of this study was to illuminate the meanings of being a supporter as narrated by nine parent-selected professionals. The findings show that having a personal and professional philosophy on being and doing is crucial when helping parents care for their child. Being confident that it is always possible to help means to seek unique solutions for each child and family. Being a trustworthy partner of parents means to trust in parents as invaluable partners as well as to exert efforts to gain the parents' trust, seeing parents as both persons and the child's carer, and being sensitive to parents' vulnerability. Enabling parents to gain competence and confidence in parenthood embraces the knowledge and skills necessary for the competence as their child's carer and respecting parental authority. The findings are interpreted as being in tune with oneself, children, and parents--which in this study implies freedom from being confined by bureaucracy, prestige, and institutional norms but freedom to be authentic and act according to personal philosophies.