Parental expectations in the care of their children and adolescents with diabetes

There is little research about what parents of children with diabetes want and need from their health-care providers as they negotiate life with diabetes. Sixty-three parents of children with type 1 diabetes were interviewed. Interviews were tape-recorded and transcribed verbatim, and a content analysis of text data was conducted. Three themes emerged describing what they wanted in their relationships with diabetes providers: laying the foundation, providing clinical care, and engaging families as partners. Collectively, these data provide vivid insights into the parent's perspective regarding their needs from diabetes providers as well as their perceptions of interactions that were unhelpful or worse, hurtful or undermining.     

"I have to turn myself inside out": caring for immigrant families of children with asthma

In multicultural societies, health care professionals encounter immigrant families of children with asthma. They play an important role in supporting these families, but few studies have focused on this phenomenon. The aim of the present study is to gain a broader understanding of the challenges health care professionals face in their encounters with non-Western immigrant parents of children with asthma. Seventeen professional caregivers were interviewed, and their narratives were analyzed using qualitative content analysis. The results show that health care professionals' main challenges when encountering immigrant parents can be described by the theme, "Turning oneself inside out." This theme is characterized by five categories: gender and professional issues, impact on professional relationships, communication challenges, unfamiliar disease and treatment perceptions, and time issues. The results highlight the importance of providing health care professionals with support and organizational conditions that increase opportunities to understand the unique situation of these families.     

Do nurses working in adult psychiatry take into consideration the support network of families affected by parental mental disorder?

The aim of this study was to gain information about registered and practical mental health nurses' activities concerning support network of families affected by parental mental illness. Data were collected using a structured questionnaire distributed to all 608 practical and registered mental health nurses working in adult psychiatric units in five Finnish university hospitals. A total of 311 nurses returned completed questionnaires (response rate 51%). Sixty per cent (n = 222) of registered nurses and 36% (n = 88) of practical mental health nurses responded. Information about family relationships and socio-economic situation was gathered regularly by all nurses. The nurses' individual characteristics, such as being a parent, further family education and use of family-centred care, were significantly related to their activeness in discussing the family's support network with the parents. Discussing family relationships and families support networks forms part of patient care in adult psychiatric nursing with families with dependent children (under 18 years of age). Nurses can work directly with the parents to aid them to strengthen their support network for themselves and their children.     

Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: evidence to guide the development of a palliative care service

OBJECTIVE: To obtain feedback from families of children receiving palliative and supportive care about their care needs in hospital and in community settings. DESIGN: A two-phase combined quantitative and qualitative study. SETTING: Western Australia. PARTICIPANTS: 134 parents and 20 service providers. RESULTS: Analysis indicated the concept of palliative care is poorly understood by health professionals and by parents. Many families are affected emotionally, financially and physically by the burden of caring for children with life threatening or chronic conditions requiring complex care at home. Parents indicated the need for clear and honest information about their child's condition and prognosis throughout the trajectory of illness and perceived this had been lacking. Families required financial and practical assistance with providing care from their children at home. Parents also wanted more practical resources and information to assist with the management of their child's nutrition and pain, as well as support for their other children. The level of respite (in home and residential) was perceived to be insufficient and inequitable. Parents also required access to, and advice from, multidisciplinary health professionals when caring for their child at home. There was a perceived lack of coordination between community services and the hospital. CONCLUSION: Education of health professionals and parents regarding the concepts and introduction of palliative and supportive care is required. Care for children and their families should be coordinated by a multidisciplinary team in consultation with children and their families, and linked and integrated with the treating hospital in collaboration with community services. More inclusive criteria are required for community services including practical aids and respite care.     

Parent-nurse interactions: care of hospitalized children

BACKGROUND: An essential component of quality nursing care is nurses' ability to work with parents in the hospital care of their children. However, changes in the health care environment have presented nurses with many new challenges, including meeting family-centred care expectations. AIM OF THE PAPER: To report a research study examining the experiences of parents who interacted with nurses in a hospital setting regarding the care of their children. METHODS: A qualitative approach was employed for this study. In-depth audiotaped interviews were conducted with eight parents representing seven families. Data collection was completed over a 7-month period in 2001. FINDINGS: Parents characterized their experiences with nurses caring for their children as interactions, and identified the elements of establishing rapport and sharing children's care as key to a positive perception of the interactions. These elements were influenced by parental expectations of nurses. Changes in nurses' approach were reported by parents as the children's conditions changed. CONCLUSION: Nurses were able to work with families in the hospital care of their children in ways that parents perceived as positive. However, in parents' views, their interactions with nurses did not constitute collaborative relationships. A deeper understanding of these interactions may provoke new thinking about how to promote an agency's philosophy, and how nurses enact this philosophy in practice.     

Impact of asthma education received from health care providers on parental illness representation in childhood asthma

The burden of asthma has increased dramatically despite increased understanding of asthma and new medication regimens. Data reported here are part of a larger study investigating factors that influence parental asthma illness representation and the impact of this representation on treatment outcomes, including the parent/health care provider relationship. We investigated the influence of asthma related education provided by health care providers on these outcomes. After interviewing 228 parents of children with asthma, we found that asthma education received from the child's health care providers positively influenced parental belief systems, especially attitudes towards anti-inflammatory medications and facts about asthma. Parents who reported receiving more education also reported stronger partnerships with their child's health care provider.     

Evaluating the needs of children with asthma in home care: the vital role of nurses as caregivers and educators

To date, few evaluations have examined issues specific to children's asthma management in their homes. This study examined the characteristics, risk factors, and needs of children with asthma, and the impact of home health nurses on improving parents'/family caregivers' knowledge about asthma triggers and management. The medical records of children, 相似文献   

Cultural intersections in the care of Mexican American children with chronic conditions

Cultural intersections occur whenever people from different cultures meet. Intracultural intersections may also occur between people with a similar heritage but different life experiences. Cultural intersections can present challenges in communication and understanding between people with differing values and priorities. At the same time, they offer opportunities for growth, illuminate universal suffering, and foster compassion. This article describes cultural intersections experienced by Mexican American parents of children with chronic conditions. These intersections affect relationships between parents and among parents, nurses, and other health care providers, sometimes providing unexpected insights for parents about their own lives and experiences. Nurses who are aware of cultural intersections in their practices can enhance their appreciation for the diversity existing within and between cultural groups, while focusing on the universal goal of providing excellent care for children with chronic conditions.     

Pediatric nursing practice: keeping pace with technological advances

Over the past 25 years, extensive technological and medical advances have had a major impact on the way pediatric nursing is practiced. Pediatric nurses have expanded their nursing roles, established professional organizations and certification standards to ensure clinical competence at the bedside, and tirelessly advocated for the health care needs of children and their families. In addition, pediatric nurses have collaborated with other health care providers to institute family-centered and developmentally appropriate philosophies of care. All of these changes will assist pediatric nurses to remain focused on the most important aspect of their work: Supporting the unique needs of children and their families.     

Parents' perspectives on homelessness and its effects on the educational development of their children.

This qualitative study explored parents' perceptions of how their homelessness affected the development and academic achievement of their children. Grounded theory with symbolic interactionism was the framework for this study. Data were collected through semistructured interviews with 34 homeless families in a variety of settings. Multiple factors were found, including unstable relationships, abuse and violence, abdication of parental responsibility, poor parenting models, and resilient children. The findings present a case for supportive educational services for homeless school-age children. School nurses play a dual role. They can ensure that school personnel and resource providers understand the culture of homelessness, and they can develop and implement innovative programs for parents and school personnel to help homeless children.     

Working with families having parents who are gay or lesbian

Families in which one or both parents are gay or lesbian are becoming increasingly common as social acceptance of this lifestyle increases and legal barriers slowly erode. Despite past concerns and occasional reports to the contrary, the bulk of research has shown no evidence that children of parents who are gay or lesbian suffer any greater physical or mental pathology than children of heterosexual parents. However, research does suggest that there may be ways in which health care providers can be more respectful and supportive of homosexual parents and their families. Health care providers should examine their own attitudes toward these families and consider how to provide a welcoming environment and presence. Using gender neutral language about spouses, displaying posters and publications related to varied family types, and acknowledging both parents as participants in care are some examples. Health care providers who are aware of the special concerns these parents and their children may have, including stigmatization, the issue of disclosure, teasing, feeling different, and the stress resulting from challenges faced due to anti-homosexual social attitudes, can demonstrate sensitivity to the involved children and provide families with anticipatory guidance, support, suggested reading material, and referrals to appropriate organizations.     

Australian parents’ experiences with universal child and family health services

BackgroundAustralian governments provide free services to promote maternal and child health, and to support parenting for families with children up to age five. Services are principally provided by dedicated child and family health nurses, but also by general practitioners, practice nurses, pharmacy nurses and midwives.AimThis study aimed to examine the experiences of families with young children across Australia in accessing and receiving health care for well children, parenting support and advice from a range of providers.MethodsThe study used quantitative and qualitative data from an online survey of 719 parents and carers with children aged up to five years.FindingsOn quantitative scales, most respondents rated healthcare providers favourably for accessibility, credibility and their approach to families. However, qualitative responses revealed widely varying reactions to child and family health provision. Parents described both positive and negative experiences, highlighting elements of practice that are critical to consumer engagement.DiscussionParents require health care and support that are accessible, consistent, affordable, encouraging, trustworthy, evidence-based and non-judgemental. Parents feel more confidence in the information and care provided by health professionals who are well-informed, resourceful and who respect their knowledge and beliefs.ConclusionThe findings demonstrate ways in which child and family health providers can engage and effectively support families with young children.     

Negotiation of parental roles within family-centred care: a review of the research

Aims and objectives. To review research published in the past 15 years about how children's nurses’ negotiate with parents in relation to family‐centred care. Background. Family‐centred care is a basic tenet of children's nursing and requires a process of negotiation between health professionals and the family, which results in shared decision‐making about what the child's care will be and who will provide this. The literature highlights inconsistencies in the degree to which nurses are willing to negotiate with parents and allow them to participate in decisions regarding care of their child. There is need to explore further the extent to which nurses communicate and negotiate shared care with children and their parents. Conclusions. Three themes emerged from this review of the literature relating to whether role negotiation occurred in practice, parental expectations of participation in their child's care and issues relating to power and control. Parents wanted to be involved in their child's care but found that nurses’ lack of communication and limited negotiation meant that this did not always occur. Nurses appeared to have clear ideas about what nursing care parents could be involved with and did not routinely negotiate with parents in this context. Relevance to clinical practice. For family‐centred care to be a reality nurses need to negotiate and communicate with children and their families effectively. Parents need to be able to negotiate with health staff what this participation will involve and to negotiate new roles for themselves in sharing care of their sick child. Parents should be involved in the decision‐making process. However, research suggests that a lack of effective communication, professional expectations and issues of power and control often inhibit open and mutual negotiation between families and nurses.     

Sexuality education for youth with chronic conditions

Pediatric nursing has long neglected the important topic of sexuality, supporting the myth that children are asexual. How can we learn about this crucial topic? How can we incorporate sexuality education into our nursing care in a respectful and supportive manner? How can we honor the whole person, including the sexual self? This article addresses the need for sexuality education for children with chronic conditions and their families; describes a framework for education for the separate yet inter-relating aspects of sexuality; provides practical pointers for nurses to include sexuality education in their client care; and identifies sources of information for health care providers and families.     

Parenting,Family Life,and Well-Being Among Sexual Minorities: Nursing Policy and Practice Implications

Parenting and family life are fundamental social constructs in human society and in law and public policy. Family structures and support systems provide important economic and psychological advantages for parents as well as for their children. Stigma toward lesbian and gay parents often marginalize individuals in these families and restrict family members' full expression of social citizenship, humanity, and personhood. Stigma directly contributes to increased risk for substance abuse, anxiety, and depressive illness among both parents and children. This article reviews the relevant policy literature to deconstruct the impacts of stigma on the psychological health and well-being of sexual minority parents so that psychiatric/mental health nurses and other health care providers can identify and counter these effects in their practices and advocate for policy improvements.     

Parenting, family life, and well-being among sexual minorities: nursing policy and practice implications

Parenting and family life are fundamental social constructs in human society and in law and public policy. Family structures and support systems provide important economic and psychological advantages for parents as well as for their children. Stigma toward lesbian and gay parents often marginalize individuals in these families and restrict family members' full expression of social citizenship, humanity, and personhood. Stigma directly contributes to increased risk for substance abuse, anxiety, and depressive illness among both parents and children. This article reviews the relevant policy literature to deconstruct the impacts of stigma on the psychological health and well-being of sexual minority parents so that psychiatric/mental health nurses and other health care providers can identify and counter these effects in their practices and advocate for policy improvements.     

Health care providers' perspectives about working with parents of children with cancer: a qualitative study

Research to understand the sources of stress and job satisfaction in pediatric oncology staff is limited. The aim of the authors' qualitative study was to describe the key work-related demands and rewards in relation to working closely with parents from the perspective of health care providers (HCPs). Semistructured interviews were conducted with 13 doctors, 9 nurses, 5 social workers, and 6 child life specialists. Line-by-line, focused, and theoretical coding was used to establish categories and themes. Constant comparisons were used to examine the relationships within and across codes and categories. Interviewing continued until no new themes emerged. HCPs found it rewarding when they established close or long-term relationships with parents and to helped families through the entire cancer journey, including palliative care. HCPs found it challenging to work with complex families; with parents who are demanding, rude, or angry; with parents who have differing views about the treatments and palliative care; and with having to relay bad news to parents. Future research could explore the relationship between the factors that the authors have identified and burnout syndrome.     

Relationship among asthma knowledge, behavior management and social adaptation in school-age children with asthma in Taiwan

This study examined the relationships between asthma knowledge, behavior management, and social adaptation among school-age children with asthma. A total of 210 school-age asthmatic children and their parents were recruited from a medical hospital in Taiwan. The children completed asthma knowledge and behavior management questionnaires, and their parents completed the Child and Adolescent Adjustment Profile. There was a statistically significant positive correlation between behavior management and social adaptation among asthmatic children. Asthma knowledge and behavior management were positively associated but did not correlate with children's social adaptation. The behavior management of the children acted as a predictor of their social adaptation. These findings suggest that efforts to raise children's asthma knowledge will benefit these individuals in terms of behavior management. The introduction of asthma behavior management plans could facilitate the social adaptation of asthmatic children and, in particular, increase their independence and reduce their withdrawal as well as enhance their self-confidence and self-esteem.     

Schools' capacity to help low-income, minority children to manage asthma.

This article describes the challenges and strengths of asthma management in 14 low-income, predominantly African American urban elementary schools serving more than 5,000 students. Asthma prevalence was 24.5%. Teachers, school principals, parents, and children described how asthma was managed at school. Data from classmates of students with asthma showed that they had moderate to high levels of information about the disease. Data from teachers indicated the great need for practical instruction on how they might effectively support a child with asthma in the classroom and on the playground. Principals raised concerns about expectations for the functioning of school staff and implementation of school policies especially related to asthma emergencies. Parents reported a range of problems their children face at school. Data from children with asthma showed that 75% believed asthma affected their school work. Findings from this study should be useful to school personnel, health providers, and others who assist children and their families to manage asthma at school. Data suggest that making school nursing services available is warranted, given the impact of asthma on the school community.     

Cybersupport: empowering asthma caregivers

In the United States, an estimated 6.5 million children have asthma (Akinbami, 2005). Due to the chronic and unpredictable nature of asthma, the condition places excessive demands on the primary caregiver. The complexity of asthma management has required parents to take increased responsibility for the assessment and treatment of their child's asthma (Dickinson & Dignam, 2002). Many families are turning to the Internet for information and support. The purpose of this study was to gain insight into the "lived" experiences of an online asthma caregivers support group. Archived messages posted to an online discussion list were analyzed using phenomenological thematic analysis. Five themes emerged providing insight into the meaning of caregiving and the provision of social support. Online support narratives provide a unique way to gain insight and understanding of the experiences of mother's enacting the caregiver role. Understanding the everyday lives of asthma caregivers can help nurses and other health care providers better meet caregiver needs.