Mothers' perceptions of child care assistance: the impact of a child's disability.

OBJECTIVE: This study examined and compared mothers' perceptions of child care assistance provided by fathers and other caregivers. Awareness of child care division of labor will assist occupational therapists in addressing the needs of children with disabilities within the family context. METHOD: One hundred and thirty-five mothers living in two-parent households kept a time diary of their daily activities for 7 consecutive days using the Caregiver's Activity and Recording of Events Inventory and estimated the percentage of child care their partners performed, the amount of child care their partners performed, and their satisfaction with this division of labor. One third of the women had children with multiple disabilities, one third had children with Down syndrome, and one third had children who were typically developing. RESULTS: The majority of mothers in all three groups perceived that they were responsible for the majority of child care. There were no significant differences between groups in terms of mothers' perceptions of the amount of child care provided by fathers and other caregivers, including relatives, childsitters, nurses, school personnel, and neighbors. However, there were wide variations among families concerning child care arrangements and division of labor. Seventy-five percent of mothers indicated that they were satisfied with the division of child care labor between mothers and fathers, and no significant correlation was found between perceived percentage of child care performed and satisfaction with the division of labor. CONCLUSION: Mothers in this study were responsible for the majority of child care whether their child had a disability. The variation in number of hours that others spent performing child care activities within individual families suggests that there is no "best" or typical pattern. Occupational therapists need to collaborate with families to determine a system of accommodations to manage their daily routine that most effectively meets the family's needs.     

Promoting family-centered care with foster families.

There has been a tremendous increase in the need for foster families since the 1980s largely because of the effects of drug abuse on the child and the biological family. As many as 500,000 children are currently living with foster families. Many children living with foster families were exposed to drugs before birth. Even those not exposed before birth demonstrate the effects of having lived with drug-abusing family members. Family life for these children is very often chaotic and unpredictable. There are increased health care needs for foster children due to drug-exposure and neglect. Yet, research suggests that the health care needs of foster children are often neglected. Foster families report that their concerns and needs are, frequently, neither recognized nor addressed by health professionals. Pediatric nurses can improve health care by increasing their awareness of the special needs of foster families and foster children.     

Knowledge Generation for the HIV-Affected Family

Purpose: To examine the current literature about HIV-affected families in regard to knowledge development and priorities for future research.
Significance: The current view of HIV focuses largely on HIV-infected individuals. There is a paucity of relevant research and a need to make explicit the priorities for knowledge generation about HIV-affected families.
Scope: HIV family literature, 1980-1996, was reviewed and categorized and serves as the context for presenting future priorities for knowledge generation about HIV-affected families. Priorities identified were designing and testing family-level services; determining epidemiology of the phenomenon of HIV family caregiving; who gives care and why, what caregivers do, the outcomes of caregiving, quality of family care, and relationships
Conclusions: A critical need is to address in-depth the problems that have limited knowledge development about HIV-affected families. This explication of issues and questions to understand HIV-affected families can stimulate future research.     

Staff-family relationships in nursing home care: a typology of challenging behaviours

Aim.  This paper draws on data from a study which investigated how Australian nursing home staff constructed staff–family relationships.
Background.  Working with the family in aged care to provide the best care possible is consistent with modern nursing philosophy which espouses holistic care. The quality and enjoyment of the experience however, is frequently fraught with problems and challenges for both the staff and the family involved.
Design.  A qualitative constructivist design as described by Guba and Lincoln [ Fourth Generation Evaluation . Sage Publications, London.] was used.
Method.  Thirty paid caregivers drawn from eight nursing homes were interviewed about their experiences of working with residents' families. A constant comparative method of data analysis was used to arrive at the findings.
Results.  This paper reports on seven themes under the category of 'unacceptable behaviours'. These themes describe a range of attitudes and behaviours exhibited by families which staff members found undesirable.
Conclusions.  Staff members found a number of family behaviours challenging. Nursing home staff perceives the family as subordinate to their needs and want to retain control of the work environment.
Relevance to clinical practice.  Nursing home staff need to move away from custodial models of care focused on 'getting the work done' and develop more family friendly work practices that are inclusive of the needs of the family and view them as equal partners in care.     

Promoting Normalization in Families With Preschool Children With Type 1 Diabetes

issues and purpose. The family environment is the most important influence on child adaptation to type 1 diabetes. A plan of care assists parental adaptation in families with a preschool child with type 1 diabetes.
conclusions. The family environment is affected by the family's progress toward normalcy. Normalization can be facilitated by nursing interventions that promote parental mutuality in management and the development of a parental support system.
practice implications. Nurses can provide education about Type 1 diabetes and its management in preschool children to fathers, other family members, and family friends to encourage their involvement in caregiving. Parental mutuality in management and an adequate parental instrumental support system facilitates normalization and affects the family environment, thus promoting child adaptation.     

Care for chronically ill children and elderly in the People's Republic of China

This paper examines home care for urban chronically ill elderly and children in the People’s Republic of China. Seventy-five families with a chronically ill child living at home and 75 families with a chronically ill elderly person living at home responded to in-depth interview questions. These data provide insights into many dimensions of this home care situation including the severity of the illness and problems experienced by family caregivers. Study results show the difficulties of home health-care and provide a basis for nursing’s role in China’s future home care.     

Chronic Intestinal Pseudo-Obstruction: Pediatric Case Presentations and Review of the Literature

ISSUES AND PURPOSE. Chronic intestinal pseudo-obstruction (CIP) is a rare condition characterized by small bowel dysmotility. Its effects are severe and disabling in pediatric clients. The purpose of this article is to provide an overview of CIP and summarize information useful to pediatric nurses.
CONCLUSION. Nursing management of the pediatric client with CIP is challenging, not only in terms of direct care provided to the child, but also in ongoing support and education of the child and family.
PRACTICE IMPLICATIONS. Nurses practicing in either inpatient or outpatient settings may encounter children and families dealing with this disorder. Nurses are in a key position to educate others and influence the outcomes of care provided to children with CIP and their families.     

. . . on Foster Care International Society of Psychiatric-Mental Health Nurses

PROBLEM:  Mental health problems are particularly widespread for foster children. There are approximately 700,000 youth in foster care and nonfamily settings in the United States. The mean entry age is 3 years. The average stay is 2 years. Experts estimate that between 30% and 85% of youngsters in out-of-home care have significant emotional disturbances. Foster care children represent 5% of Medicaid enrollees but use approximately 40% of Medicaid funds. A substantial number of these children have psychological problems so serious that they require residential placement. Adolescents living with foster parents or in group homes have about four times the rate of serious psychiatric disorders than those living with their own families (2009a). Despite this level of need, less than one-third of children in the child protective system are receiving mental health services (2009a).
SOURCES:  Child psychiatric nurse advocates from the Association of Child and Adolescent Psychiatric Nurses Division of the International Society of Psychiatric-Mental Health Nurses compiled this position statement for adoption by the Board of Directors as the Association's formal statement on the plight of children and adolescents in foster care.
CONCLUSIONS:  Areas that need to be addressed include (a) lack of consistent and comprehensive service planning; (b) communications across agencies and with the youth, their foster parents, and key stakeholders; (c) use of evidence-based interventions to prevent and reduce the incidence of disability; (d) education of child welfare case workers about mental and emotional therapeutic management; and (e) education of foster parents and youth about mental health issues and appropriate treatments.     

Risks and benefits of parent/child bed sharing

Purpose: To recognize the concerns for and against parent/child bed-sharing (co-sleeping) practices.
Data sources: Review of the literature and the clinical experiences of the authors.
Conclusions: The decision to bed share ultimately lies with the parent, but it is the responsibility of the nurse practitioner (NP) to discuss risks and benefits of parent preferences and to help families make a safe decision regarding the sleeping arrangement for their child.
Implications for practice: If NPs know the benefits and risks regarding co-sleeping and bed sharing, they can better promote safe and culturally congruent family centered care.     

Early support needs of Finnish families with small children

AIMS: This study describes the early needs for support that families with small children have in the context of their own life situations. The study population consisted of Finnish families (n = 551) who participated in a project titled 'Families with Children' (1996-2001). The project supplemented the existing public services. The information provided by the study was utilized in supporting families and developing family work in seven experimental areas. METHODS: The data were collected between 1997 and 2000 using family service plans and client reports. The data were analysed with inductive content analysis and using the SPSS software (version 7.5). FINDINGS: The families needed support in the areas of parenthood, upbringing and child care, marital problems and social support networks. The need for early support was also connected to health problems of the children or the parents, problems with work or studies, unemployment, problems in economic or living conditions, or family crises. In addition to support, the families searched for help from family workers in disputes over child custody and visitation rights, intoxicant abuse and violence, and problems in adjusting to society. Each family had 4-5 needs for early support. CONCLUSIONS: The results demonstrate that families with small children have many needs for which they seek help when there are available services supplementing the existing public services. The information provided by the study can be utilized in maternity and child welfare clinics, in social services and in family work provided by civic organizations to define the early needs of families for support and to develop services.     

Rearing the Child Who Is Technology Dependent: Perceptions of Parents and Home Care Nurses

ISSUES AND PURPOSE. Most children who are dependent on technology for survival live with their families at home. This study explores the perceptions of parents and home care nurses regarding rearing the technology-dependent child.
DESIGN AND METHODS. In this qualitative study, interviews were conducted with 16 parents whose child is technology dependent and 15 registered nurses who provided home care.
RESULTS. Rearing the child who is technology dependent is similar to but different from raising other children. Parental communication and negotiation of child-rearing expectations with home care nurses is essential.
PRACTICE IMPLICATIONS. Improved collaboration and communication between parents and nurses may reduce parental stress and enhance development for children who are dependent on technology.     

Lebanese parents’ experiences with a child with cancer

BackgroundThe impact of childhood cancer on the family has been studied in different cultures and continues to be an object of study and concern, In Lebanon, a country of 4 million people 282 new pediatric cases of cancer age <20 years diagnosed in 2004 were reported in 2008.ObjectivesThe purpose of this study was to explore the experiences of Lebanese families living with a child with cancer.MethodThe study followed purposeful sampling in which 12 parents (mother or father) of a child with cancer were interviewed. Data were analyzed following the hermeneutical process as described by Diekelmann and Ironsides (1998).ResultsA constitutive pattern “It is a continuous battle” and five themes emerged from the data analysis. Living with the shock of the diagnosis; Alterations in the quality of the family’s life; Living with added burdens; Disease impact on the family and sibling dynamics; Living with uncertainty represent the major themes that emerged from the participants’ experiences while living with a child with cancer.ConclusionThe study contributes to the knowledge that would help health care professionals understand the experiences and challenges that are faced by Lebanese families living with a child with cancer. This awareness would serve as a basis for health care professionals in general and nurses in particular to understand parents’ experiences, and offer support, elicit communication of feelings, and examine possibilities for forming a partnership during the challenging course of the child’s illness. Supported parents are more likely to provide more effective care to their child with cancer.     

Comparing Psychological Adaptation to having a Disease Gene in Affected Individuals and Unaffected Carrier Parents

Health care professionals are in an ideal situation to help families inform their children about genetic conditions. In families where there is a child with a known genetic condition, parents make decisions about when and how to convey information to their children, however, little is known about how parents make these decisions. The purpose of this qualitative analysis was to examine parents' beliefs and strategies related to sharing information with their children. The sample consisted of 139 parents of children with sickle cell disease, phenylketonuria, cystic fibrosis, Marfan syndrome, neurofibromatosis, hemophilia, and von Willebrand disease. Audio recorded, semi-structured interviews were transcribed verbatim, processed, and coded using the ATLAS.ti software. Thematic analysis found: parents share information and develop specific strategies within a context of normalizing the child's life; parents' decisions to share information are based on a developmental framework; parental strategies for sharing information with children may differ when the child has a potentially life-limiting genetic condition. Findings emphasize the need to use a family developmental perspective when working with families of children with genetic conditions. These findings will provide new information about how families manage information and provide direction for care of families in which a child has a genetic condition.     

Palliative care for children and young people: a community paediatric nursing perspective

Community children's nursing services are well placed to provide palliative care for children and young people living with life-limiting conditions. The provision of home support can make a real difference to the quality of life for these families. Yet families report that services are fragmented and difficult to access. The range of professionals involved in the care of a child with life-limiting conditions can be daunting for both the child and the family. The key worker role has been identified as advantageous in co-ordinating care. The community children's nursing team is in a prime position to take on this role. Best practice is achieved through an integrated approach to service provision.     

Asymmetry in the intensive care unit: redressing imbalance and meeting the needs of family

Aims and objectives:  The purpose of this study was to develop a way for nurses to understand how they negotiate and work with families in the intensive care unit (ICU).
Background:  The importance of family to the critically ill patient is described in previous research; however, research exploring how to work with families in the clinical context of ICU is modest and there is little information and research to understand how the nurse might work to integrate family and understand family needs in the clinical context.
Design:  The study was designed using action research methodology where an action research group of registered nurses from ICU proposed changes to how the family are defined, assessed and understood.
Methods:  In the action research group and reflective conversations, the group planned new assessment tools to use in ICU to work with the family.
Results:  Exploring their pragmatic knowledge of the context, the action research group suggested ways of working with families that did not impede the clinical work of the ICU. Families provided information about themselves and the patient that helped the nurse to plan care that redressed some of the asymmetrical nature of the relationship in the ICU.
Conclusions:  This research created novel ways of viewing family and offers strategies to address asymmetry between families and ICU professionals.
Relevance to clinical practice:  Positive steps to redress asymmetrical relationships can help ensure that family care is better integrated into ICU practice.     

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.     

Learning to nurse: the family as the unit of care*

How can we prepare nurses who will have as their focus of practice, the health of the family unit? This paper describes the learning outcomes which were generated from a short term experience in a curriculum where the major thrust is learning to nurse families in a health promoting way. Students were provided with experience with families who were undergoing an important family event, e.g., coping with the short term hospitalization of a child. An exploration and analysis of these experiences revealed for students the content of nursing families who are in the process of dealing with this particular event of family living. This content related to the acquisition of nursing skills of an interpersonal, technical and decision-making nature as well as the development of knowledge which provides the basis for nursing the family as the unit of care.