Caprice Knapp

Priorities for global research into children's palliative care: results of an International Delphi Study.

BackgroundThere is an urgent need to develop an evidence base for children’s palliative care (CPC) globally, and in particular in resource-limited settings. Whilst the volume of CPC research has increased in the last decade, it has not been focused on countries where the burden of disease is highest. For example, a review of CPC literature in sub Saharan Africa (SSA) found only five peer-reviewed papers on CPC. This lack of evidence is not confined to SSA, but can be seen globally in specific areas, such as an insufficient research and evidence base on the treatment of pain and other symptoms in children. This need for an evidence base for CPC has been recognised for some time, however without understanding the priorities for research in CPC organisations, many struggle with how to allocate scarce resources to research.MethodThe International Children’s Palliative Care Network (ICPCN) undertook a Delphi study between October 2012 and February 2013 in order to identify the global research priorities for CPC. Members of the ICPCN Scientific Committee formed a project working group and were asked to suggest areas of research that they considered to be important. The list of 70 areas for research was put through two rounds of the Delphi process via a web-based questionnaire. ICPCN members and affiliated stakeholders (nu2009=u2009153 from round 1 and nu2009=u200995 from round 2) completed the survey. Participants from SSA were the second largest group of respondents (28.1xa0% round 1, 24.2xa0% round 2) followed by Europe.ResultsA list of 26 research areas reached consensus. The top five priorities were: Children’s understanding of death and dying; Managing pain in children where there is no morphine; Funding; Training; and Assessment of the WHO two-step analgesic ladder for pain management in children.ConclusionsInformation from this study is important for policy makers, educators, advocates, funding agencies, and governments. Priorities for research pertinent to CPC throughout the world have been identified. This provides a much needed starting place for the allocation of funds and building research infrastructure. Researchers working in CPC are in a unique position to collaborate and produce the evidence that is needed.

Adverse childhood experiences and dental health in children and adolescents.

OBJECTIVEnThis study seeks to explore the how specific toxic stressors, specifically adverse childhood experiences (ACEs), and their frequencies may be associated with tooth condition and the presence of caries.nnnMETHODSnData from the 2011-12 National Survey for Child Health (NSCH), a nationally representative survey of child health, were used in this study. Pediatric dental health was measured using parent report of two characteristics: condition of teeth and having a toothache, decayed teeth, and/or unfilled cavities in the past 12 months. ACEs were measured by asking about a childs exposure to the divorce of a parent, parental incarceration, domestic violence, neighborhood violence, drug and alcohol abuse, mental illness, and financial hardship. Analyses were adjusted by sociodemographic characteristics, healthcare access and utilization, and comorbid chronic conditions.nnnRESULTSnThe presence of even one ACE in a childs life increased the likelihood of having poor dental health. Additionally, having multiple ACEs had a cumulative negative effect on the condition of their teeth and the presence of dental caries (Odds Ratios 1.61-2.55). Adjusted models show that racial and socioeconomic factors still play a significant role in dental health.nnnCONCLUSIONSnIn addition to the known disparities in dental caries, this study demonstrates that there is significant association between childhood psychosocial issues and dental health. Preventive dental care should be considered incorporating the screening of multiple biological stressors, including ACEs, in routine dental visits as a means of identifying and reducing dental health inequities.

Pediatric Palliative Care: Global Perspectives

Palliative care has long been a model of care that focuses on both patients with life-limiting illnesses and their family members. This is especially true in pediatrics where parents, siblings, grandparents and others are affected by a child’s illness. Yet, provision of pediatric palliative care around the world is scant. There are of course many reasons for this such as finances, lack of trained professionals, and a lack of general awareness by the public or policymakers. Despite these barriers, and many others, many countries have found ways to provide this care and those countries are both resource-rich and resource-poor. It is important for these countries to share their stories, which include valuable information on how barriers were overcome and programs were developed and implemented. Only through information dissemination will countries with no programs be able to learn from others and to identify strategies that they can use to help advance the pediatric palliative care movement worldwide.

The Comorbidity of Physical, Mental, and Developmental Conditions Associated with Childhood Adversity: A Population Based Study

Objective Adverse childhood experiences (ACEs) are associated with myriad health conditions and risk behaviors in both adolescents and adults. In this study we examine the association between ACEs and specific physical, mental, and developmental conditions, as well as their comorbidity, in a nationally representative sample of children 0–17xa0years. Methods Data from the 2011–2012 National Survey for Child Health (NSCH) were used. A total of 95,677 random-digit-dial interviews with parents of children 0–17xa0years were conducted across all 50 states and the District of Columbia. Outcomes included singular condition domains (physical, mental, and developmental) as well as combinations of condition domains (e.g., physical plus mental, mental plus developmental, etc.). Results Twenty-three percent of parents reported that their child experienced 1 ACE; 9.2xa0% experienced 2 ACEs, and 10.3xa0% experienced three or more. Across all three condition domains and combinations of domains, children who experienced at least one ACE were more likely than children who experienced 0 ACEs to have at least one condition. Additionally, greater ACEs was associated with increased likelihood of at least one condition in each domain and in multiple domains. Conclusions for practice These findings support the extension of existing family environment screening tools in pediatric practices as well as the establishment of a system for monitoring ACEs in families with multiple or complex conditions.

Expanding the Oncofertility Workforce: Training Allied Health Professionals to Improve Health Outcomes for Adolescents and Young Adults

As cancer survivors live longer, fertility and reproductive health become important health concerns. Like other secondary effects of cancer treatment, these anticipated health risks should be addressed before the initiation of cancer treatment. While existing and emerging technologies may prevent or reduce risk of infertility (e.g., sperm, oocyte, embryo, or tissue banking), the lack of a trained workforce knowledgeable about oncology and reproductive health poses a barrier to care. The allied health professional (AHP) is a target of opportunity because of the direct and sustained patient relationships. Thus, developing tailored educational programs for nurses, social workers, psychologists, and physician assistants is an urgent unmet need toward field building. In this report, we outline results from a pilot study evaluating AHP perceptions of an oncology and reproductive health curriculum originally developed for nurses and adapted to meet the needs of several other AHP groups.

Factors Associated with Having a Medical Home for Children At-Risk of Experiencing Negative Events: Results from a National Study

AbstractObjectivesnAlthough the Patient Centered Medical Home is a considered an optimal model for care, some children still do not receive care in this model. Beyond the clinical and practitioner factors known to affect having a medical home, family and environmental risks [referred to as adverse childhood experiences (ACE)] may also be associated with having a medical home. This study’s purpose was to examine whether family and environment risks are associated with children having a medical home.MethodsData from the nationally representative, cross-sectional 2011–2012 National Survey of Children’s Health telephone survey were used (Nxa0=xa095,677). Analyses were conducted to describe the sample characteristics and determine the association between family and environmental risks and whether a child has a medical home. A subset of risks were modeled from the seminal study of ACEs.ResultsNearly one-quarter of parents reported that their children experienced at-least one ACE. Compared to children who experienced no ACEs, children who experienced at least one ACE, or other family and environmental risks, had lower odds of having a medical home than those whom did not. Logistic regressions showed that cumulative ACEs (odds ratio (OR) 0.76; 95xa0% confidence interval (CI) 0.65–0.90) as well as other family and environmental risks (OR 0.36, 95xa0% CI 0.26–0.51) were related to lower odds of having a medical home.ConclusionsThis study suggests that family and environmental risks, including ACEs, impact parental report of a child having a medical home and that a dosage effect may exist. ACEs and other risk factors must be considered when providers care for children at-risk of experiencing negative events, particularly multiple negative events.

Using Bayesian Imputation to Assess Racial and Ethnic Disparities in Pediatric Performance Measures

OBJECTIVEnTo analyze health care disparities in pediatric quality of care measures and determine the impact of data imputation.nnnDATA SOURCESnFive HEDIS measures are calculated based on 2012 administrative data for 145,652 children in two public insurance programs in Florida.nnnMETHODSnThe Bayesian Improved Surname and Geocoding (BISG) imputation method is used to impute missing race and ethnicity data for 42 percent of the sample (61,954 children). Models are estimated with and without the imputed race and ethnicity data.nnnPRINCIPAL FINDINGSnDropping individuals with missing race and ethnicity data biases quality of care measures for minorities downward relative to nonminority children for several measures.nnnCONCLUSIONSnThese results provide further support for the importance of appropriately accounting for missing race and ethnicity data through imputation methods.

Factors Associated with a Patient Centered Medical Home among Obese and Overweight Children

Objective: This study aims to determine the frequency of overweight and obese children that have a Patient Centered Medical Home (PCMH), the factors associated, and the effect of having one on several common child outcomes. nMethods: 43,501 children from the 2011-2012 National Survey of Children’s Health were analysed for this study. Descriptive, bivariate, and multivariate analyses were conducted. nResults: Parents report that 54% of overweight and obese children have a patient centered medical home. Results from the multivariate models suggest that just being overweight and obese was not associated with having a medical home. However, when comorbidities were accounted for overweight and obese children were less likely to have a medical home and had decreased outcomes as compared to their underweight/healthy weight peers. Obese and overweight children with comorbidities were more likely to have a personal doctor but less likely to have effective care coordination. nConclusions: The PCMH is a model that could be used to improve health and health outcomes for the most vulnerable children. However, obesity should be taken as a chronic condition just as other conditions and addressed on a routine bases. The PCMH model offers a vehicle to develop and implement population-based processes to identify, assess, and manage care for these children.

Adapting a perinatal empathic training method from South Africa to Germany

BackgroundMaternal mental health conditions are prevalent across the world. For women, the perinatal period is associated with increased rates of depression and anxiety. At the same time, there is widespread documentation of disrespectful care for women by maternity health staff. Improving the empathic engagement skills of maternity healthcare workers may enable them to respond to the mental health needs of their clients more effectively. In South Africa, a participatory empathic training method, the “Secret History” has been used as part of a national Department of Health training program with maternity staff and has showed promising results. For this paper, we aimed to describe an adaptation of the Secret History empathic training method from the South African to the German setting and to evaluate the adapted training.MethodsThe pilot study occurred in an academic medical center in Germany. A focus group (nu2009=u20098) was used to adapt the training by describing the local context and changing the materials to be relevant to Germany. After adapting the materials, the pilot training was conducted with a mixed group of professionals (nu2009=u200915), many of whom were trainers themselves. A pre-post survey assessed the participants’ empathy levels and attitudes towards the training method.ResultsIn adapting the materials, the focus group discussion generated several experiences that were considered to be typical interpersonal and structural challenges facing healthcare workers in maternal care in Germany. These experiences were crafted into case scenarios that then formed the basis of the activities used in the Secret History empathic training pilot. Evaluation of the pilot training showed that although the participants had high levels of empathy in the pre-phase (100% estimated their empathic ability as high or very high), 69% became more aware of their own emotional experiences with patients and the need for self-care after the training. A majority, or 85%, indicated that the training was relevant to their work as clinicians and trainers, that it reflected the German situation, and that it may be useful ultimately to address emotional distress in mothers in the perinatal phase.ConclusionsOur study suggests that it is possible to adapt an empathic training method developed in a South African setting and apply it to a German setting, and that it is well received by participants who may be involved in healthcare worker training. More research is needed to assess adaptations with other groups of healthcare workers in different settings and to assess empathic skill outcomes for participants and women in the perinatal period.

Project Redemption: Conducting Research with Informal Workers in New York City

Informal workers are a challenging group to work with, due to geographically dispersed locations, undocumented migrants, and other forms of vulnerability. We discuss the process through which we gained entry to work with informal workers in New York City. We work with “canners”, a population which collects recyclables and deposits them at a redemption center to collect cash refunds. Partnering with a nonprofit organization solves issues of group organization, but difficulties remain in building relationships with individuals. We used a combination of in-person meetings, an iterative and collaborative research design, and incentives to lay the groundwork for multi-method research with this group.