Exploring the Experiences of Community-based Children's Nurses Providing Palliative Care

Aim: To explore the experiences of community children’s nurses (CCNs) and children’s palliative care nurses (CPCNs) who provide end-stage palliative care to children with cancer in the family home. Method: A qualitative approach was adopted. One-to-one interviews and facilitated case discussions were undertaken with 30 community nurses who had provided palliative care to a child or young person with cancer. A grounded theory approachwas used for data analysis. Findings: Because of the relative rarity of childhood cancer many CCNs and CPCNs engage infrequently in the palliative care of children or young people. This makes it difficult for them to develop and maintain knowledge and skills. There is a variation in the out-of-hours service provision available to families. Conclusion: Further funding is needed to develop teams of trained, experienced CCNs and CPCNs who can provide palliative care for children and young people 24 hours a day and 365 days a year. Keywords Community nursing, oncology, out-of-hours services, palliative care

Caring for Children Dying from Cancer at Home: a Qualitative Study of the Experience of Primary Care Practitioners

Background. The rarity of childhood cancers makes providing palliative care in the community an unusual event for primary care practitioners. Providing this care requires effective interprofessional collaboration with the team that forms to provide the care often working together for the first and only time. Objective. To explore the experiences of primary care practitioners following their involvement in the palliative care of a child with cancer at home. Methods. The study design was a community-based qualitative study. The study location was the West Midlands region. Purposeful sample of GPs and community nurses involved in providing palliative care to 12 children. One-to-one in-depth interviews with 47 primary care professionals (10 GPs and 37 community nurses) and 5 facilitated case discussions were undertaken. Field notes were documented and grounded theory data analysis undertaken: chronological comparative data analysis identifying generated themes. Results. GPs had minimal input into the preceding care of children undergoing treatment for cancer but sought to re-establish their role at the child’s transition to palliative care. GPs felt they had a role to play and could add value to this phase of care, highlighted their continuing role with the child’s family and acknowledged that they had gained from the experience of contributing. However, lack of specialist knowledge and uncertainty about their role within the team made this more challenging. In contrast, community nurses were routinely involved in both active treatment and palliation care phases. There was little evidence of collaboration between the specialist and primary care professionals involved. There was considerable variation in out of hours provision across cases. Conclusions. Engaging primary care practitioners needs to be more actively anticipated and negotiated at the transition to palliation. Variation in out of hours care is another cause for concern. Enhancing inter-professional collaboration and planning during both active and palliative care phases may help. Keywords. Cancer, family medicine, palliative care, paediatric.

FAMILY CHARACTERISTICS, STATE PROGRAM EFFECTIVENESS, AND REPORT OF INADEQUATE CARE AMONG FAMILIES OF YOUNG CHILDREN WITH HEARING LOSS

Approximately 1.6 per 1,000 newborns in the U.S. are born with hearing loss. Congenital hearing loss poses a risk to their speech, language, cognitive, and social-emotional development. Early detection and intervention can improve outcomes. Every state has an Early Hearing Detection and Intervention program (EHDI) to promote and track screening, audiological assessments and linkage to early intervention. However, a large percentage of children are “lost to system (LTS),” meaning that they did not receive recommended care or that it was not reported. This study used data from the 2009-2010 National Survey of Children with Special Health Care Needs and data from the 2011 EHDI Hearing Screening and Follow-Up Survey to examine how 1) family characteristics; 2) EHDI program effectiveness, as determined by LTS percentages; and 3) the family conditions of education and poverty are related to parental report of inadequate care. The sample comprised 684 children between the ages of 0 and 5 years with hearing loss. The results indicated that living in states with less effective EHDI programs was associated with an increased likelihood of not receiving early intervention services (EIS) and of reporting poor family-centered communication. Sibling classification was associated with both receipt of EIS and report of unmet need. Single mothers were less likely to report increased difficulties accessing care. Poor and less educated families, assessed separately, who lived in states with less effective EHDI programs, were more likely to report non-receipt of EIS and less likely to report unmet need as compared to similar families living in states with more effective programs. Poor families living in states with less effective programs were more likely to report less coordinated care than were poor families living in states with more effective programs. This study supports the conclusion that both family characteristics and the effectiveness of state programs affect quality of care outcomes. It appears that less effective state programs affect disadvantaged families’ service receipt report more than that of advantaged families. These findings are important because they may provide insights into the development of targeted efforts to improve the system of care for children with hearing loss.

Salivary cortisol level and uncooperative behavior in pediatric dental practice

Aim: To investigate the relation between uncooperative behavior and salivary cortisol level in children who underwent preventive dental care. Methods: The sample was composed by 10 children of both sexes aged 40 to 52 months, presenting uncooperative behavior during dental preventive treatments. The saliva collection was performed using a cotton wheel and an Eppendorf tube (Sarstedt Salivete®) in 3 different moments: a) at home, on a day without dental treatment and at the same time on the day of the sessions treatment; b) 30 min after the end of the session, when there was manifestation of uncooperative behavior; c) 30 min after the end of the session, when there was a cooperative behavior of the child. A sample of saliva was centrifuged for 5 minutes at 2400 rpm, 1 of mL of saliva was pipetted in an Eppendorf tube and stored in a freezer at -20 ° C. For the determination of the levels of salivary cortisol was used an Active® kit for cortisol enzyme immunoassay (EIA) DSL-10-67100, composed of specific rabbit antibody anti-cortisol. Data were analyzed statistically for the uncooperative behavior issued in the beginning and at the end of sessions, using the paired t test (p<0.05) and for cortisol levels in saliva samples at home, after the beginning and at the end of sessions, using repeated-measures ANOVA and Tukey’s test (p<0.05). Results: During expression of uncooperative behavior in preventive dental care sessions the salivary cortisol level was significantly higher (0.65 ± 0.25 μg/dL) compared with expression of collaborative behavior (0.24 ± 0.10 μg/dL). Conclusions: It is possible to conclude that, even under preventive intervention, the stress must be controlled in order to reduce dental anxiety and fear.

Children with Special Health Care Needs: Comparison of the Effects of Home Care Setting, Prescribed Pediatric Extended Care Setting, and Long-Term Care Setting on Child and Family Health Outcomes and Health Care Service Use

Technological advances during the past 30 years have dramatically improved survival rates for children with life-threatening conditions (preterm births, congenital anomalies, disease, or injury) resulting in children with special health care needs (CSHCN), children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally. There are approximately 10.2 million of these children in the United States or one in five households with a child with special health care needs. Care for these children is limited to home care, medical day care (Prescribed Pediatric Extended Care; P-PEC) or a long term care (LTC) facility. There is very limited research examining health outcomes of CSHCN and their families. The purpose of this research was to compare the effects of home care settings, P-PEC settings, and LTC settings on child health and functioning, family health and function, and health care service use of families with CSHCN. Eighty four CSHCN ages 2 to 21 years having a medically fragile or complex medical condition that required continual monitoring were enrolled with their parents/guardians. Interviews were conducted monthly for five months using the PedsQL TM Generic Core Module for child health and functioning, PedsQL TM Family Impact Module for family health and functioning, and Access to Care from the NS-CSHCN survey for health care services. Descriptive statistics, chi square, and ANCOVA were conducted to determine differences across care settings. Children in the P-PEC settings had a highest health care quality of life (HRQL) overall including physical and psychosocial functioning. Parents/guardians with CSHCN in LTC had the highest HRQL including having time and energy for a social life and employment. Parents/guardians with CSHCN in home care settings had the poorest HRQL including physical and psychosocial functioning with cognitive difficulties, difficulties with worry, communication, and daily activities. They had the fewest hours of employment and the most hours providing direct care for their children. Overall health care service use was the same across the care settings.

Planning and evaluation

Introduction: The core business of public health is to protect and promote health in the population. Public health planning is the means to maximise these aspirations. Health professionals develop plans to address contemporary health priorities as the evidence about changing patterns of mortality and morbidity is presented. Officials are also alert to international trends in patterns of disease that have the potential to affect the health of Australians. Integrated planning and preparation is currently underway involving all emergency health services, hospitals and population health units to ensure Australia's quick and efficient response to any major infectious disease outbreak, such as avian influenza (bird flu). Public health planning for the preparations for the Sydney Olympics and Paralympic Games in 2000 took almost three years. ‘Its major components included increased surveillance of communicable disease; presentations to sentinel emergency departments; medical encounters at Olympic venues; cruise ship surveillance; environmental and food safety inspections; bioterrorism surveillance and global epidemic intelligence’ (Jorm et al 2003, 102). In other words, the public health plan was developed to ensure food safety, hospital capacity, safe crowd control, protection against infectious diseases, and an integrated emergency and disaster plan. We have national and state plans for vaccinating children against infectious diseases in childhood; plans to promote dental health for children in schools; and screening programs for cervical, breast and prostate cancer. An effective public health response to a change in the distribution of morbidity and mortality requires planning. All levels of government plan for the public’s health. Local governments (councils) ensure healthy local environments to protect the public’s health. They plan parks for recreation, construct traffic-calming devices near schools to prevent childhood accidents, build shade structures and walking paths, and even embed drafts/chess squares in tables for people to sit and play. Environmental Health officers ensure food safety in restaurants and measure water quality. These public health measures attempt to promote the quality of life of residents. Australian and state governments produce plans that protect and promote health through various policy and program initiatives and innovations. To be effective, program plans need to be evaluated. However, building an integrated evaluation plan into a program plan is often forgotten, as planning and evaluation are seen as two distinct entities. Consequently, it is virtually impossible to measure, with any confidence, the extent to which a program has achieved its goals and objectives. This chapter introduces you to the concepts of public health program planning and evaluation. Case studies and reflection questions are presented to illustrate key points. As various authors use different terminology to describe the same concepts/actions of planning and evaluation, the glossary at the back of this book will help you to clarify the terms used in this chapter.

What causes childhood leukaemia? Some beliefs of parents of affected children

The theories of parents about the cause of their children's leukaemia have been documented in the course of a case-control study. From a sample of 175 children who were diagnosed as having acute lymphoblastic leukaemia, 91.4% of their parents put forward their theories. Some of these theories were related clearly to material that had been published and therefore had some scientific validity. Other theories often had no apparent scientific basis. Persons who are involved in the care of children with leukaemia should be aware of the wide variety of theories that are held by their parents so that they may provide counselling which could be of help in the relief of feelings of anxiety or guilt among the parents. Parents should always be afforded the opportunity to put forward their own theories so that they may be discussed on a rational basis. It is conceivable that some parents might put forward new hypotheses about leukaemogenesis that could be tested scientifically.

Submission to National Inquiry into Children in Immigration Detention from The Australian Psychological Society

Executive Summary The Australian Psychological Society categorically condemns the practice of detaining child asylum seekers and their families, on the grounds that it is not commensurate with psychological best practice concerning children’s development and mental health and wellbeing. Detention of children in this fashion is also arguably a violation of the UN Convention on the Rights of the Child. A thorough review of relevant psychological theory and available research findings from international research has led the Australian Psychological Society to conclude that: • Detention is a negative socialisation experience. • Detention is accentuates developmental risks. • Detention threatens the bonds between children and significant caregivers. • Detention limits educational opportunities. • Detention has traumatic impacts on children of asylum seekers. • Detention reduces children’s potential to recover from trauma. • Detention exacerbates the impacts of other traumas. • Detention of children from these families in many respects is worse for them than being imprisoned. In the absence of any indication from the Australian Government that it intends in the near future to alter the practice of holding children in immigration detention, the Australian Psychological Society’s intermediate position is that the facilitation of short-term and long-term psychological development and wellbeing of children is the basic tenet upon which detention centres should be audited and judged. Based on that position, the Society has identified a series of questions and concerns that arise directly from the various psychological perspectives that have been brought to bear on estimating the effects of detention on child asylum seekers. The Society argues that, because these questions and concerns relate specifically to improvement and maintenance of child detainees’ educational, social and psychological wellbeing, they are legitimate matters for the Inquiry to consider and investigate. • What steps are currently being taken to monitor the psyc hological welfare of the children in detention? In particular, what steps are being taken to monitor the psychological wellbeing of children arriving from war-torn countries? • What qualifications and training do staff who care for children and their families in detention centres have? What knowledge do they have of psychological issues faced by people who have been subjected to traumatic experiences and are suffering high degrees of anxiety, stress and uncertainty? • What provisions have been made for psycho-educational assessment of children’s specific learning needs prior to their attending formal educational programmes? • who are suffering chronic and/or vicarious trauma as a result of witnessing threatening behaviour whilst in detention? • What provisions have been made for families who have been seriously affected by displacement to participate in family therapy? • What critical incident debriefing procedures are in place for children who have witnessed their parents, other family members, or social acquaintances engaging in acts of self-harm or being harmed while in detention? What psychotherapeutic support is in place for children who themselves have been harmed or have engaged in self- harmful acts while in detention? • What provisions are in place for parenting programmes that provide support for parents of children under extremely difficult psychological and physical circumstances? • What efforts are being made to provide parents with the opportunity to model traditional family roles for children, such as working to earn an income, meal preparation, other household duties, etc.? • What opportunities are in place for the assessment of safety issues such as bullying, and sexual or physical abuse of children or their mothers in detention centres? • How are resources distributed to children and families in detention centres? • What socialization opportunities are available either within detention centres or in the wider community for children to develop skills and independence, engage in social activities, participate in cultural traditions, and communicate and interaction with same-age peers and adults from similar ethnic and religious backgrounds? • What access do children and families have to videos, music and entertainment from their cultures of origin? • What provisions are in place to ensure the maintenance of privacy in a manner commensurate with usual cultural practice? • What is the Government’s rationale for continuing to implement a policy of mandatory detention of child asylum seekers that on the face of it is likely to have a pernicious impact on these children’s mental health? • In view of the evidence on the potential long-term impact of mandatory detention on children, what processes may be followed by Government to avoid such a practice and, more importantly, to develop policies and practices that will have a positive impact on these children’s psychological development and mental health?

Informal kinship care in rural China : the influence of Confucianism and attachment

This article examines the role of informal kinship care in addressing the emotional needs and mental health, along with relationships, of school-age children left behind in rural China. Rural–urban migration in China has caused many rural children to be left behind in their local communities. Based on semi-structured interview data, this article explores Confucianism’s impact on Chinese kin caregivers’ understandings of children’s needs and their childrearing practices to address these needs. Through the lens of attachment theory, this study identified a close affective bond between children left behind and their kin caregivers. This relationship is underpinned by kin caregivers’ high commitment and love for children, and the Confucian concept of ‘benevolence’. It not only provides children left behind with a sense of belonging, it also alleviates their trauma/grief due to separation from their parents

Oral health behaviour, conditions and care among dentate elderly patients in Lithuania: preventive aspects

The present cross-sectional study aimed to assess oral health behaviour, dental and periodontal conditions, dental care, and their relationships among elderly dentate patients in Lithuania. The target population in the study were dentate patients aged 60 and older attending public dental services in Kedainiai, Lithuania. The data collection took place between the autumn of 1999 and the winter of 2001. Data were collected by means of a self-administered questionnaire for all (n=174) and a clinical examination targeting about half of the subjects (n=100). The questionnaire inquired about oral health behaviour, the life-first and also the most recent dental treatments, sources on and self-assessed knowledge of oral self-care, a self-reported number of teeth, and socio-demographic information. The clinical examination included basic dental and periodontal conditions. A total of 82 women and 92 men completed the questionnaire; their mean age was 69.2 and their average number of teeth was 16.2 (CI 95% 15.4-17.1). In all, 25% had 21 or more teeth and 32% indicated wearing removable dentures. The oral health behaviour, the participants reported, was poor: 30% reported twice daily toothbrushing, 57% responded that they always use fluoride toothpaste, 19% indicated daily interdental cleaning, nearly all said they take sugar in their coffee and tea, and 30% indicated going for check-ups. As the main source of information on oral self-care, the subjects indicated health professionals (82%), followed by social contacts (72%), broadcasted media (58%), and printed media (42%). A total of 34% assessed their knowledge of oral self-care as good, and their self-assessed knowledge correlated (r=0.52) with professional guidance they had received about oral self-care. In their most recent treatment, conservative (39%) and non-conservative (34%) treatments dominated, and preventive ones were the least reported (7%). Regarding guidance in oral self-care, 54% reported having received such about toothbrushing, 32% about interdental cleaning, and 33% had been given visual information. Clinical examinations revealed the presence of plaque, calculus, bleeding on probing and deepened pockets in all of the subjects; 70% of the subjects were diagnosed with pockets of 6mm and deeper, 94% with caries, and 73% with overhangs of restorations. Those subjects assessing their knowledge of oral self-care as good and reporting a higher intensity of guidance in oral self-care as received, indicated practicing the recommended oral self-care more frequently. Twice daily toothbrushing was associated with good self-assessed knowledge of oral self-care (OR 4.1, p<0.001) and a university education (OR 5.6, p<0.001). Those subjects with better oral health behaviour had a greater number of teeth. Having 21 or more teeth was associated with good self-assessed knowledge of oral self-care (OR 4.1, p=0.03). Better periodontal conditions were associated with a higher frequency of toothbrushing. The presence of periodontal pockets of 6mm and deeper was associated with the level of self-assessed knowledge of oral self-care being below good (OR=3.0, p=0.04) and the level of dental cleanliness being poor (OR=2.7, p=0.02). To conclude, oral health behaviour and conditions call for improvement in elderly subjects in Lithuania. To improve the oral health of their elderly dentate patients, dentists should apply all the available tools of chair-side prevention and active guidance. The latter would be an effective means of updating the knowledge of oral self-care and supporting recommended oral health behaviour. A preventive approach should be strongly emphasized in countries with limited resources for oral health care, such as Lithuania. Author’s address: Sonata Vyšniauskaite, Department of Oral Public Health, Institute of Dentistry, University of Helsinki, P.O.Box 41, FI-00014 Helsinki, Finland. E-mail: sonata.vysniauskaite@helsinki.fi

Application of the Intervention Mapping protocol to develop Keys, a family child care home intervention to prevent early childhood obesity.

BACKGROUND: Many families rely on child care outside the home, making these settings important influences on child development. Nearly 1.5 million children in the U.S. spend time in family child care homes (FCCHs), where providers care for children in their own residences. There is some evidence that children in FCCHs are heavier than those cared for in centers. However, few interventions have targeted FCCHs for obesity prevention. This paper will describe the application of the Intervention Mapping (IM) framework to the development of a childhood obesity prevention intervention for FCCHs METHODS: Following the IM protocol, six steps were completed in the planning and development of an intervention targeting FCCHs: needs assessment, formulation of change objectives matrices, selection of theory-based methods and strategies, creation of intervention components and materials, adoption and implementation planning, and evaluation planning RESULTS: Application of the IM process resulted in the creation of the Keys to Healthy Family Child Care Homes program (Keys), which includes three modules: Healthy You, Healthy Home, and Healthy Business. Delivery of each module includes a workshop, educational binder and tool-kit resources, and four coaching contacts. Social Cognitive Theory and Self-Determination Theory helped guide development of change objective matrices, selection of behavior change strategies, and identification of outcome measures. The Keys program is currently being evaluated through a cluster-randomized controlled trial CONCLUSIONS: The IM process, while time-consuming, enabled rigorous and systematic development of intervention components that are directly tied to behavior change theory and may increase the potential for behavior change within the FCCHs.