International adoption families: a unique health care journey

The purpose of this study was to identify and describe the health care experiences of families with an internationally adopted child. Content analysis of data from 107 adoptive parents was used to identify themes that characterized health care experiences of the families. Four themes were identified: a) Coming home: Like a lobster thrown into a boiling pot; b) Vigilance: Is my child healthy today? Will my child be healthy tomorrow?; c) Unique health care needs of international adoption families: We are different; and d) Importance of support by health care providers: Do they know or care? Health care providers need to be aware of the unique experiences of the increasing number of international adoption families. The themes identified provide insight into the health care experiences of international adoption families and the crucial role of health care providers in helping international adoption families feel supported on their journey.     

Human becoming theory with children

As a nurse practitioner, I am often challenged with providing care for children in the traditional medical model. Struggling with these challenges has created new ways of being with patients and their families. Working with children is gratifying, stimulating, and life changing. Living true presence with children as they draw images of their realities gives rise to a powerful interconnectedness that facilitates greater understanding of their meaning about what is important to them as they create new ways of seeing health opportunities. Bearing witness to children as they use art and words to describe their feelings encourages and fosters new ways of becoming for the nurse and the child and the child's family. This column describes a dialogical-engagement of this nurse practitioner and a young child and how this process transformed the nurse practitioner as she moves to be with children and families in new ways.     

Maternal perceptions of family-provider relationships and well-being in families of children with Down syndrome.

The purpose of this study was twofold: (a) to describe parental perceptions of family-provider relationships, and (b) to explore links between parental perceptions of family-provider relationships and well-being in families with children who have Down syndrome. Mailed questionnaires were used to collect data from 94 families that include a child with Down syndrome. Data from 89 mothers are the focus of this report. The results indicate that when mothers of children with Down syndrome believe that their family's relationship with health care providers is positive and family-centered, they feel more satisfied with the care that their child is receiving and they are more likely to seek help from health care providers. In addition, when a discrepancy exists between what mothers want the family-provider relationship to be and what they believe the relationship is, mothers feel less satisfied with the care that their child is receiving. Finally, higher levels of individual and family well-being are reported by mothers who (a) want, and believe they have, positive family-centered relationships with providers, and (b) feel more satisfied with care received. Results of this study contribute to a better understanding of the role that health care providers play in individual and family adaptation to chronic conditions.     

The everyday occupation of families with children with autism.

The purpose of this qualitative research study was to understand a family's experiences negotiating family daily life and the meanings they ascribed to these experiences when they had a child with severe autism. In-depth, semistructured interviews were conducted with five family units. The interviews explored the meaning of the family's participation in daily life activities. The transcribed interviews were analyzed with a phenomenological method. The results emerging from this study indicate that families with children with severe autism may experience difficulty engaging in daily activities that hold positive meaning and rely on stringent patterns of routines that revolve around the child with autism to meet the demands of daily life.     

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.     

HIV/AIDS in childbearing Hispanic/Latinas: an emerging crisis

The purpose of this article is to describe possible reasons for the increase in HIV/AIDS among childbearing Hispanic/Latinas and to discuss the implications for maternal child nurses. The median age of Hispanic/Latinas is 27 years compared to 36 years for all other races combined. Hispanic/Latinas have the highest birth rate among all women in the United States; they also have a five times greater rate of HIV/AIDS infection compared to non-Hispanic White women. Most commonly, Hispanic/Latina women first discover their HIV status when they receive prenatal care. Gender and cultural roles, poverty, lack of health insurance, poor health literacy, limited English proficiency, and low educational level all contribute to this emerging crisis. Educating Hispanic/Latina women about prevention methods, early testing/counseling, and treatment options is a first step in decreasing the suffering and devastation associated with HIV/AIDS among childbearing Hispanic/Latinas and their families.     

The staff's experience of the death of a child and of supporting the family

The purpose of the study was to describe how staff members experience the death of a child and how they support the grieving family. The goal is to find means to improve supporting activities in the university hospital. The data for this study were collected with a questionnaire given to the staff who encounter the death of a foetus or infant at their work (n = 102). The questionnaire contained both structured and open-ended questions. Altogether, 69 members of the staff (68%) answered the questionnaire. The open-ended questions were analysed using content analysis. The staff experiences of a child's death manifested themselves in grief, feelings of injustice, experiences of one's limited resources, and relief. About half (51%) of the respondents estimated that they were able to support families rather well. Education in supporting the grieving family increased the ability to support families. Social support for families included emotional, informational, and concrete support. The majority of the staff expected support from colleagues after the death of a child. The study results show that the hospital staff supports the grieving family, but also recognizes their inadequacy as supporters. The staff also needs support in order to be able to support the grieving family.     

Siblings' experiences of having a brother or sister with autism and mental retardation: a case study of 14 siblings from five families

The aim of this study was to describe the present and past experiences of 14 siblings from five families in terms of having a brother or sister with autism and mental retardation. Personal interviews were conducted with the siblings before their brothers or sisters were moved to a newly opened group home. Qualitative content analysis was used for the analysis of the transcribed texts. The analysis resulted in seven content categories: precocious responsibility, feeling sorry, exposed to frightening behavior, empathetic feelings, hoping that a group home will be a relief, physical violence made siblings feel unsafe and anxious, and relations with friends were affected negatively. The conclusion is that these siblings' experiences revealed stressful life conditions. Counseling for the family and for siblings is recommended to help them deal with their feelings and problems. For the siblings in these five families, a group home was a relevant alternative as a temporary or permanent placement for the child with autism and mental retardation.     

Parenting foster children with chronic illness and complex medical needs

The experience of parenting foster children with chronic illness and complex medical needs was explored in a phenomenological inquiry with 10 foster families. Thirteen participants currently fostering chronically ill children with complex medical needs were interviewed. Recorded interviews were transcribed and analyzed using van Manen's method. Data analysis yielded five essential themes: Foster parents described being committed to the child in their care, coming to know the needs of a medically complex foster child, and identifying effective and ineffective interventions encountered through day-to-day living with a medically complex child. Furthermore, they shared what it was like to experience loss of a child through relinquishment and death. Last, for these parents, fostering children with complex health care needs was a life-changing experience. The findings show that parenting a chronically ill foster child with complex medical needs is a multifaceted experience having implications for multiple disciplines.     

"Circle of caring": a First Nations worldview of child rearing

BACKGROUND: For occupational therapy to be meaningful for all families who have a child with a developmental disability, the profession needs to consider and integrate into practice alternative and more inclusive epistemologies. A greater understanding and respect of a First Nations worldview may help reduce the risk of inadvertently perpetuating oppression and assimilation. PURPOSE: To describe raising a child with a developmental disability from the perspective of five members of the Lil'wat Nation. METHODS: Data were obtained from in-depth interviews and analysed using a constant comparative approach. FINDINGS: Within the category of family the subcategories identified were extensive support network, intergenerational learning and doing, and influence of the residential school system. Within the category of raising a child the subcategories identified were health and spirituality, causation beliefs, and a sense of knowing. IMPLICATIONS: Occupational therapists need to be cognizant of alternative worldviews on child rearing, family, and health that may differ significantly from their own personal and professional beliefs and practices.     

The views of children and their families on being in hospital

This study aimed to elicit the separate views of children, young people and carers after a period in hospital as an inpatient. Questionnaires were administered to 130 children and their families discharged after a period as hospital inpatients in January 2003. Anonymized data were returned from 50 families. Data analysis indicated that there were differences in the way that the three groups perceived the period of admission. Although parental sleeping and other social arrangements were subject to some critical review, the nursing care experienced by families was highly rated. Although arrangements for discharge were deemed satisfactory, 38% of carers had to wait for medicines to arrive on the ward before they could go home. Only six of the young people felt there ward catered for their age group and five indicated poor levels of privacy. None of the young people indicated that they had used the equipped teenagers' room. Attempts to include the voice of the younger child in this study proved unsatisfactory as parents elected to act as proxies in completing the child-specific questionnaires. Child healthcare professionals attempting to involve all service users in determining optimum levels of care need to consider fully the methods of data collection and their applicability for differing age groups of children. Dependence on adult carers to reflect accurately the voice of the child is not fully satisfactory.     

Parents' perceptions of the quality of pediatric and perinatal end-of-life care

OBJECTIVE: The purpose of this study was to describe the quality of care provided before, at the time of, and following the death of an infant, child, or adolescent from the perspective of the parent, using a newly developed survey. SAMPLE AND METHODS: Parents were asked to participate in this study if they experienced a stillbirth or death of an infant/child/youth between 12 and 24 months prior to the beginning of the study. Thirty-eight families completed the survey with one of the researchers over the telephone or in person. Survey questions asked parents to report on the care received rather than rate how satisfied they were with care. RESULTS: Parents were reluctant to report negative occurrences in care they received, yet, when questioned further, nearly every parent could relate a particular event or person who had a negative impact on their experience. Parents identified communication between health professionals, relationships with health professionals, care at the time of death, and bereavement follow-up as problematic areas. CONCLUSION: There is room for improvement in the end-of-life care provided to infants, children and youth, and their families.     

The family dynamics of childbearing and childrearing families in Finland

Within the context of an international comparative family dynamics project, this study had two chief goals to describe the family dynamics of childbearing and childrearing families in Finland, and to study changes in family dynamics after childbirth The sample consisted of families expecting ( n = 118) and rearing ( n = 94) their first or second child in Finland Two instruments were used in data collection, i e the Family Dynamics Questionnaire and the Family Dynamics Measure, both these tools have been developed in the USA According to the results, childbearing and childrearing families were thought to function quite well Pregnant mothers described their family dynamics in more positive terms than fathers, reporting greater flexibility and clearer communication Similarly, mothers reported more individuation and mutuality than their partners First-time expectant families reported more mutuality than families expecting their second child Childrearing mothers reported more individuation, but also more role conflict than did fathers Communication in families rearing their first child was clearer than in families rearing their second child The birth of a child affected family dynamics by bringing about various changes such as role conflict, isolation and distorted communication     

Working with vulnerable families: a health visiting perspective

The aim of this paper is to describe part of the findings of a research study which explored the health visitor's role in identifying and working with vulnerable families in relation to child protection One objective of the study was to describe and analyse the work which health visitors undertake with vulnerable families aimed at preventing crisis, ill-health and child abuse This paper outlines this aspect of the research and looks specifically at health visitors'perceptions of their work and interventions with vulnerable families and children Health visitors working m an inner city area and a suburban area were sampled and pilot work was undertaken in a third suburban area Stage one involved a postal survey of 102 health visitors, in which a response rate of 58 (57%) was obtained Stage two involved 12 in-depth interviews with health visitors One major finding of this study highlighted the fact that the health visitor's role when working with vulnerable families appears to be one of diversity and conflict In the light of the current National Health Service reforms it seems of paramount importance that health visitors illustrate to others, both managers and other health/social service professionals alike, the important function of their work with these vulnerable groups This is essential to ensure that health visitors'work with vulnerable families in relation to child protection is understood and valued and that the needs of vulnerable families continue to be identified This paper contributes to the knowledge base of health visiting and raises some important issues for professional health visiting practice     

Smoking behaviour in young families: Do parents take practical measures to prevent passive smoking by the children?

Objective - To investigate smoking behaviour in young families.

Design - Cross-sectional study.

Setting - Mother and child health centres in Oslo, Norway.

Subjects - the families of 1046 children attending the health centres for 6-weeks-, 2- or 4- year well child visits.

Main outcome measures - Daily smoking, smoking quantity and practical measures taken by the parents to prevent passive smoking among the children as assessed by parental reports.

Results - in 48% of the families at least one adult was smoking. 33% of the smoking parents smoked more than ten cigarettes per day. 47% of the smoking families reported that they did not smoke indoors.

Conclusions - the parents were less likely to smoke if they were more than 35 years of age, had a child aged less than one year, had' a spouse/co-habitee or had a long education. Smoking parents smoked less if they had a spouse/co-habitee, had a child aged less than one year or had few children. Smoking parents were more often careful and did not smoke indoors if they had a child aged less than one year, had a spouse/co-habitee, did not have a smoking spouse/co-habitee or smoked a low number of cigarettes per day.     

Families of children with Down syndrome: responding to "a change in plans" with resilience

The purpose of the present investigation, which was guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, was twofold: (a) to describe maternal perceptions of parental and family adaptation in families raising a child with Down syndrome, and (b) to examine linkages between family demands, family resources, family problem solving and coping, and family adaptation in families of children with Down syndrome. Seventy-six mothers completed mailed questionnaires. Seventy percent of the mothers rated their family's overall functioning as either a 4 or a 5 on a 5-point scale (1 = poor; 5 = excellent). In their written comments, most mothers reported that their family was doing well or very well. Three family variables (i.e., family demands, family resources, and family problem-solving communication) were significantly associated with family adaptation. These results provide support for the belief that many families of children with Down syndrome respond to "a change of plans" with resilience. That is, they are able to endure, survive, and even thrive in the face of ongoing challenges associated with raising a child with Down syndrome.     

Adjusting to being a father to an infant born prematurely: experiences from Swedish fathers

The aim of this study was to describe the experiences of being a father to a prematurely born infant. Eight fathers of prematurely born children were interviewed using a narrative approach, and a thematic content analysis was used to analyse the interviews. The fathers described that the preterm birth gave them the chance to get to know their infant as they had to spend time at the intensive care unit. They also felt better educated by professionals who helped them take care of their infant. Their feelings and attachment for their infant increased over time and the fathers felt that they had a stronger bond with their child compared with friends who had babies born at term. As time passed, they became more confident as a father. In spite of the strain, the experience made them change as a person and they expressed having different values. The relationship with their partner was strengthened as they handled this situation together as a couple. However, the fathers felt fortunate despite everything and described having managed a prematurely born infant rather well. Although there are similarities between being a father to a child born at term and to one born preterm, it is significant to gain further knowledge about the specific experiences of fathers of prematurely born infants. The results of this study have implications for nurses working with families who have children born prematurely.     

Life stories of families with a terminally ill child

Family units with a terminally ill child have a tendency to withdraw and this isolation may lead to problems in their mental health. A tendency with psychologists, clergy and helpers from other professions is to act as ideal experts on the lives of saddened people. From painful personal experience, this does not seem to enable acquiescence. Therefore, the aim of research on families with terminally ill children, was to explore and describe their lives and to develop an approach to facilitate their families to obtain acquiescence. In this article however, attention will be given to the life-world of families with terminally ill children. The research consists of two phases. In phase one the experiences of four families with terminally ill children are explored and described by means of phenomenological, unstructured, in-depth interviews. In phase two an acquiescence approach, which was designed for educational psychologists to facilitate families with terminally ill children to achieve acquiscence, is described. This approach is based on results from phase one. This article focuses on phase one. In this phase four families were interviewed individually, in the privacy of their homes. The interviews were audiotaped, and were transcribed for the purpose of data gathering. The data was analysed according to Tesch's method and a literature control was performed to verify the results. Guba's model for the validity of qualitative research was used. Five recurrent themes were identified: 1. Families are able to choose their reactions to the crises of having a terminally ill child. 2. When there is a terminally ill child in the family, the family's values change. 3. Acceptance of the circumstances with a terminally ill child, makes life easier. 4. As families with a terminally ill child learn to live every moment to the full, their quality of life improves. 5. As people learn to accept support, their quality of life with a terminally ill child improves. The research indicated that families with terminally ill children move through a lonely and painful process, which is characterised by growth at the end. This growth implies that the life skills mentioned above, were obtained after years of unimaginable suffering. In order to reduce this period of suffering, an acquiescence approach was designed for educational psychologists to facilitate discovery and acceptance regarding the above life skills with family units and thus allow them to achieve acquiescence.     

Factors associated with the adaptation of parents with a chronically ill child

? The purpose of this paper is to describe the adaptation of parents who have a child with a chronic condition and some factors connected to it. ? Data were collected by a questionnaire from 189 parents who had a child with a chronic condition, such as diabetes, rheumatoid arthritis or asthma. Most (85%) of the responses were from mothers. ? The data were analysed using factor analysis. A four-factor model turned out to describe best the adaptation of the parents and their coping with the care of a chronically ill child. Two factors showed good adaptation and two poor adaptation. ? Emotional and instrumental support were connected to adaptation on each of the four factors. ? Support from health care staff and the parents' need to obtain more information were not connected to adaptation as clearly as emotional and instrumental support. ? Parents wished for support more in families where the child was under nine years old than in families where the child was over nine years old.