The many roles of family members in "family-centered care"--part II. Interview by Deborah Dokken

This article highlights the role parents can play as advocates for their own children. A mother who is interviewed describes a nurse's support in helping her claim her baby as her own in the midst of the NICU environment and how that claiming led her to become involved in his care and a strong advocate for his needs. She shares advice for parents and health care providers. A physician who is interviewed discusses working with this mother and other parents, and describes ways health care professionals can support parents as advocates.     

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.     

The journey to accepting support: how parents of profoundly disabled children experience support in their lives

Advances in medical knowledge and care have extended the lives of children with profound and multiple disabilities. In most cases it is the parents who meet the often complex and continual needs of their child with disabilities in their own home. This study explored the experience of support in the lives of such parents. The interpretive, hermeneutic phenomenology of Heidegger was employed to create a detailed and authentic account of the parents' experiences of support. Five interrelated themes emerged from data from in-depth interviews with six parents randomly selected from a purposive sample in a special school setting. The themes were: parents' feelings about support, the journey to accepting support, support as a loss, disability and the parent and the supportive relationship. Understanding the experience of support from the parent's perspective may lead to a consideration of flexible systems that challenge practice to ensure that supporters listen, learn, develop and deliver support in ways that are helpful.     

School-age children with asthma and their parents: relationships with health care providers

Health care providers, including nurses, physicians, and other personnel, are key figures who design and implement plans of care to help families manage childhood asthma, yet families' perceptions of relationships with these professionals has received limited study. Child and parent perspectives about relationships with their health care providers emerged as themes in a study that explored responsibility sharing between school-age children with asthma and their parents (Buford, 2004). Fourteen school-age children with asthma and 14 of their parents from 11 families participated in the study. Parents and, to a lesser extent, children, described aspects of their relationships with their health care providers that were supports or barriers to asthma management. Implications for nurses and other health care providers stem from these data and include the importance for health care providers to educate themselves and their patients about state-of-the-art asthma care. Education should be directed to both parents and their children. In addition, parents need to receive education about how to coach their children because the children depend on them for information and direction. Finally, nurses and other health care providers need to listen to parents and value their input about their children's conditions.     

Mommy first

Parents of children with special health care needs are often required to assume responsibility for the complex care of their children. It is important for pediatric nurses to remember these parents are, first and foremost, the child's parents and primarily responsible for loving their child, providing a safe and secure home, and fostering their child's development as a person. Pediatric nurses should support the parents in the medical/nursing care of their child in whatever way possible so the parents have more time to parent. This account from a mother of a child with developmental delay helps remind us of our need to help support parents in being "parents first."     

Mexican-origin mothers' experiences using children's health care services

A focused ethnographic study in an urban Latino community in the western United States describes Mexican-origin mothers 'experiences obtaining and using health services for their children. Repeated interviews with mothers, participant observation, and children's medical records composed the data sources. Qualitative findings suggest access to health care begins in the household, where women negotiate a working diagnosis for the children's illness with family members and coalesce support for health care seeking. Immigrant mothers described more barriers to children's health care than more acculturated mothers. Quantitative analyses of medical records supported this finding, with children of the least acculturated mothers demonstrating fewer well-child visits, increased emergent visits, and lower levels of immunization completeness. The results suggest health care providers can better meet the needs of Latino families with children by offering better explanations about children's diagnoses and treatment plans and demonstrating personalismo, or a friendly, kind, and social approach to care.     

In their own voices: families discuss end-of-life decision making--part 2

This two part series of articles presents poignant narratives based on interviews done with two mothers who suffered the worst pain imaginable--the pain of losing a child. Each woman describes an insensitive health care system with providers unaware of parental views and needs when confronted with difficult decisions during their children's illnesses and subsequent deaths. Each woman also hoped that telling her story might help nurses and other health care providers better understand how to help. Part 1 of the series is the story of a professional, highly educated mother who experienced periods of extreme distress while she tried to give her premature daughter an identity and meaningful life in the neonatal intensive care unit and the difficulties faced when she was transferred to another unit as she became more ill Part 2 of the series is the story of a highly devoted working mother who tried to understand the information that was rarely offered to her as she lived through the extreme surgical and uncertain medical interventions given her toddler daughter with a fast-growing brain tumor. Both women faced hard decisions along their daughters' illness trajectories. Both hoped for support from their health care providers in being active in decision-making. These narratives are in their own voices, from their own points of view.     

Responding to the psychosocial needs of children and families in disasters

Pediatric health care professionals play a critical role in disaster response by assisting parents, teachers, and health care organizations to meet the unique needs of children, adolescents, and families during all phases of disaster. Addressing the psychosocial needs of this vulnerable population by providing age-appropriate care and facilitating adaptive coping strategies has the potential to decrease the long-term behavioral health consequences and help children positively adjust to a stressful life experience.     

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.     

A stress model for parents of children with duchenne muscular dystrophy

This study explored the problems encountered by parents in caring for children with Duchenne muscular dystrophy (DMD). Open questionnaires (N=21) designed to identify and gauge stress factors were used to collect study data. Results showed that key elements of the care stress model in parents of DMD children prior to joining a support group included: (1) recognition of the factors underlying the changes in their child's health condition (incomprehension, inference, rationalization, and acceptance of mutation and sexual heredity); (2) special assistance needs such as barrier-free facilities, government/social assistance (role substitution, coordination, and long-term care) and medical information (on treating disease causes, psychological adjustment, rehabilitation, and the welfare system); and (3) strains (physical, psychological, sleep disturbances, and feelings of powerlessness). Once families of DMD children began participating in DMD support groups, it is important to note the information exchanged, particularly with regard to medical, rehabilitation, psychological adjustment, role substitution, and welfare benefit information.     

When disaster strikes: responding to the needs of children

When a disaster strikes, parents are quick to seek out the medical advice and reassurance of their primary care physician, pediatrician, or in the case of an emergency, an emergency department physician. As physicians often are the first line of responders following a disaster, it is important that they have a thorough understanding of children's responses to trauma and disaster and of recommended practices for screening and intervention. In collaboration with mental health professionals, the needs of children and families can be addressed. Policy-makers and systems of care hold great responsibility for resource allocation, and also are well-placed to understand the impact of trauma and disaster on children and children's unique needs in such situations.     

Listening to the quiet voices of Hispanic migrant children about health

There is a paucity of literature related to school-aged migrant children's perceptions of their own health. To best provide culturally competent care, more information is needed about migrant children's experiences. Focus-group methodology allowed the voices of migrant children to be heard by primary health care providers at a summer school program for children of migrant farm workers in south Georgia. Seventy-three children participated in 14 focus-group sessions. Six themes emerged from the data that were analyzed by using a qualitative software system. They are healthy behaviors, acculturation issues, environmental influences, health care actions, health behavior outcomes, and learning needs. Emerging patterns within each theme render insight about these migrant children. The findings suggest implications for pediatric nurses related to culturally competent care.     

Paediatric pain--concepts for caring.

Caring for the health of children is a relatively modern concept. Furthermore, recognition of children's need for relief from pain is only just beginning to emerge and remains a subject of controversy. Sadly, in the past, children's pain was viewed as a diagnostic aid rather than an entity in its own right. This paper outlines historical perspectives which contributed, not only to the slow evolution of paediatric nursing, but in particular, to recognition of children's pain as an entity. Furthermore, it emphasizes the importance of a sound understanding of children's developmental stages as fundamental to accurate assessment of children's special needs which can only be determined through effective communication. Fundamentally, as children remain a somewhat voiceless, powerless minority group, health professionals are challenged not only to provide care, but to ensure that the care they give is indeed meeting the unique needs of each and every individual child.     

‘Canaries in the mine’. Parents of adult children with schizophrenia: An integrative review of the literature

The purpose of this integrative review was to evaluate the current state of knowledge of parents who have adult children diagnosed with schizophrenia and their relationship with mental health professionals. Findings indicated that parents (primarily mothers) believed they intuitively knew when their adult children were becoming unwell and that they doggedly pursued connections with mental health care providers. Five themes were evident in the literature: trusting your instincts, feeling dismissed and devalued, making connections and making concessions, living with distress and sorrow, and becoming your own health‐care provider. The implications of the findings on mental health nursing practice indicate that professional family relationships were not ideal, and that parents wanted to improve these relationships. Parents wanted health‐care professionals to respond to their requests for help for both their children and for themselves, and wanted to be able to help the mental health team to help their adult children.     

确诊初期急性淋巴细胞性白血病患儿父母需求的质性研究

目的了解确诊初期的急性淋巴细胞性白血病患儿父母在患儿照护过程中的需求。方法运用质性现象学研究方法,对14例患儿父母进行深度的半结构访谈,并以内容分析法分析资料。结果急性淋巴细胞性白血病患儿父母需求可归纳为5个主题:信息需求,症状管理需求,心理社会需求,经济支持需求和高品质医疗需求。结论确诊初期的急性淋巴细胞性白血病患儿父母在照护过程中存在多种方面的需求,了解父母的需求有利于医护人员给予其多角度综合干预和支持。     

Children's accounts of their preoperative information needs

Aims and objectives. To explore the information needs of children aged 7–11 years relating to planned admission for surgery. To identify the knowledge of a group of children prior to admission and their own identified information needs. Background. There is widespread agreement that children should be given information prior to surgery but continuing debate about the most appropriate form and content of preadmission preparation. There is little research evidence about children's concerns, fears and misconceptions about hospitals and surgery. Previous investigations have examined the views of parents/carers and health care professionals rather than the direct reports of children themselves. This study was designed to explore whether children could identify their own information needs prior to admission for elective surgery. Design. Qualitative. Method. Nine children aged 7–11 years were interviewed using the write and draw technique to ascertain their preadmission information needs. Data collection occurred several weeks prior to the child's first admission to hospital for planned surgery. Results. Children reported that they had not received direct information from the hospital or from health professionals. They obtained information from a variety of sources including leaflets for parents, television and the experiences of relatives and friends. Some children knew very little about hospitals and their own planned operation. Children identified 61 questions about their forthcoming admissions, including questions about: getting information; procedures; anaesthesia; timing; hospital environment; family support; feelings/pain; their condition; and concerns. Conclusions. Children aged 7–11 years can identify their own information needs and so contribute to the development of preadmission education. Relevance to clinical practice. Patients attending a children's hospital can have little information provided prior to admission. Information about hospital should be presented directly to children in the most accessible and flexible form.     

Parent consultants in the health-care system: a new approach in the care of children with special needs.

A unique and innovative role for parents has emerged from the recent emphasis on family-centered, community-based health care for children with special health-care needs. The role of parent consultant is described in the following article. Identified are the characteristics of the consultant role, benefits as well as challenges, how the role is enacted, and ways to finance the position. Nurses can serve to support and nurture the parent consultant role to ensure positive role development. Parent consultants have a unique and important perspective to offer in the delivery of a family-centered approach.     

Respite support for children with a life-limiting condition and their parents: a literature review

Most children with a life-limiting condition are cared for in the family home by their parents, who require professional support to provide this care. Owing to advances in medicine and medical technology these children are living longer and, given the often relentless and all-encompassing nature of caring for children with life-limiting conditions, respite (facilitation of short breaks) is considered central to quality palliative care provision for children and their families. However, there is still ambiguity in exactly what is meant by the term 'respite', what constitutes respite care, whether the services currently provided meet the needs of the child and family, and how respite is best provided. This paper reviews the literature relating to respite as a component of children's palliative care. Themes from the literature are identified and discussed. Challenges for the providers of respite care are identified and suggestions made regarding the future development of responsive and family-focused respite care.     

Parent or nurse? The experience of being the parent of a technology‐dependent child

AIMS: This paper reports a study exploring parents' experiences of caring for a child who is dependent on medical technology, and in particular of performing clinical procedures on their own children. BACKGROUND: A group of children with a continuing need for the support of medical technology have emerged in community settings as a result of medical advances and government policies. Caring for these children has a significant social and emotional impact on parents, because of their specialized and intensive care needs. Obtaining appropriate and coordinated home support services is problematic. METHODS: Grounded theory techniques were used, and in-depth interviews were conducted with the parents of 24 children. FINDINGS: Parents' accounts revealed that their constructions of parenting were shaped by the nature of their role in caring for their child and by the transformation of their homes by medical equipment and personnel. They described themselves as having a role that had both parenting and nursing dimensions. Parents managed this tension and defined their role and relationship to their child to be primarily one of parenting by differentiating parental care-giving and its underpinning knowledge from that of professionals, particularly nurses. CONCLUSIONS: Parenting a technology-dependent child alters the meaning of parenting. Professionals need to recognize that providing care has a substantial emotional dimension for parents, and that they need opportunities to discuss their feelings about caregiving and what it means for their parenting identity and their relationship with their child. A key professional nursing role will be giving emotional support and supporting parents' coping strategies. Parents' perceptions of nurses raise questions about whether nurses' caregiving is individualized to the needs of the child and family, and whether parental expertise is recognized.