Family management of childhood chronic conditions consists of 6 family factors: (1) the family's view of the child's daily life, (2) the impact of the condition on family life, (3) the difficulty of family life, (4) the family's effort managing the child's condition, (5) the family's ability managing the child's condition, and (6) parental mutuality. Recently, the Family Management Measure (FaMM), which measures family management of children with chronic conditions (excluding cancer), was validated. The purpose of this descriptive study was to examine the comparability of these 6 factors in families with childhood brain tumor survivors. First, 14 advanced practice nurses who are experts in neuro-oncology and survivorship rated items on the FaMM as relevant and clear to families of brain tumor survivors. Second, 22 cognitive interviews with parents of brain tumor survivors described family management as comparable with families of children with other chronic illness. In this report, 2 hypothetical, contrasting case studies of family management are used to illustrate family management within the context of brain tumor survivors.Keywords childhood brain tumor survivors; adolescent and young adults; family management Standardized measures of family functioning present a mixed picture of the effects of illness on family life in pediatric oncology populations. This is due to the complexity of the science as well as the need for increased theoretical coherency and methodological sophistication (Klassen et al., 2007). A recent meta-analysis reported that mothers of children with cancer perceived more family conflict than mothers of physically healthy children. Because increased family conflict is predictive of adjustment problems in children with cancer, these findings are of concern for both the families and children. Limited specificity of family measures, however, makes it difficult to ascertain the genesis of family conflicts and how they may relate to the children's cancer. Additionally, authors of the meta-analysis suggested that more precise methods are needed to describe and measure family functioning related to childhood cancer (Pai et al., 2007).The Family Management Framework was developed on the basis of more than 20 years of conceptual, empirical, and methodological work to describe how the family functions to care for their child's condition (Knafl, Deatrick, & Gallo, 2008 Management Measure (FaMM): (1) the child's daily life, (2) the, impact of the condition on family life, (3) the difficulty of family life, (4) the effort managing the condition, (5) the ability managing the condition, and (6) parental mutuality (Knafl et al., in press; see Table 1). The instrument has 53 total items for partnered parents and 45 items for nonpartnered parents. Families of children with cancer and developmental disabilities were beyond the scope of the validation study (Knafl et al., in press).It is likely that family management characteristics are similar for childhood cancer survivors as for children with other c...
K E Y W O R D S :end-of-life care, handoff, hospice, palliative care, pediatric oncology, sign out New trials, targeted agents, and immunotherapy provide families and oncologists with great hope. Yet, for the 20% of pediatric patients who will die of cancer, many reach a point where no further lifeelongating or curative treatments are available. 1 When the hope of living as long as possible is no longer realistic, goals may shift to living as well as possible, with a focus on providing comfort and ongoing care at home. Effective communication, accurate prognostic understanding, early palliative care (PC), and hospice services can help support and guide families through these difficult transitions.Despite variable quality and availability of pediatric hospice services, nearly 50% of children who die of cancer utilize home hospice. 2 Hospice, which cares for over 1.65 million Americans and over 8,000 children and young adults annually, is considered to be the model for quality, compassionate care for people with a life-limiting illness. 3 Hospice is best poised to help children at the end of life by utilizing a teamoriented approach to tailor expert medical care, pain management, and emotional and spiritual support. 3 For the majority of families who prefer that their child's end-of-life care and death occur at home, 4 hospice significantly increases the odds of a peaceful home death. 2,4 Most hospice patients are adults with cancer who receive hospice services for a short time only after foregoing all cancer-related treatments. Children and families, however, generally wish to keep seeing their pediatric oncology team, so hospice is frequently added as a home-based team while families are still pursuing therapy, thereby lengthening the time a child receives hospice care. 2,5 The oncology and hospice teams not only need to communicate effectively during hospice enrollment, but collaborate over many months as children often receive both disease-directed and hospice care through Concurrent Care for Children, a requirement of the Affordable Care Act. 6 While adding hospice services to the care team is in the best interest of the patients and their families, the time of hospice referral is Abbreviations: EMR, electronic medical record; PC, palliative care often a high risk time for families. One parent stated: "The transition [to hospice] didn't go well; it was absolutely abysmal. That's one of the things medicine needs to fix… There needs to be a better way of making sure that when a child is ready to go home with hospice, all the Ts are crossed, all the Is are dotted, and the game plan is made." This period can be marred by provider confusion about overlapping roles of multiple specialists and home care agencies, shock if the oncology team has not prepared the family for the difficult hospice intake questions, frustration by a family who has already explained their values or expected care that is not available, and missed opportunities for excellent communication and care. 6 Families often have a great relationship a...
AimAcute hypercapnic respiratory failure (AHRF) is a medical emergency.1,2 Data from National COPD Audit Programme identified that median time from admission to Non-Invasive Ventilation (NIV) is 4.1 hours and only 42.7% of patients requiring ventilatory support receive it in under 3 hours. We utilised a novel human factors approach, reviewing AHRF case examples and undertaking multi-disciplinary discussion, to review current systems and develop interventions to improve the recognition and management of AHRF.MethodsMulti-disciplinary workshops were undertaken across emergency medicine, acute medicine, and specialist medicine to discuss case examples of AHRF. Attendees discussed the identification and management of AHRF based on the presented cases and their clinical experience. Output from the workshops and case reviews were analysed and informed the development of a Bow-Tie model that reviewed current systems in AHRF. The model identified barriers which usually facilitate effective management of these patients and threats to barriers which compromise patient care (figure 1) Interventions to address threats were developed and implemented.Abstract P133 Figure 1Bow-tie model identifying barriers and threats in the recognition and management of acute hypercapnic respiratory failure.Outcome/ResultsInterventions resulting from the multidisciplinary workshops and novel application of Bow-Tie analysis (figure 1) included: automated flag of Results showing AHRF on electronic Results software; AHRF management and referral checklists; multifaceted training of teams in management of AHRF (simulation training, capillary blood gases training, ward based training).ConclusionsThe novel application of this human factors approach in a healthcare setting allowed the identification of specific threats and development of interventions to strengthen barriers targeted at improving patient care and reducing harm.ReferencesAhmad N, et al. Acute hypercapnic respiratory failure (AHRF): Looking at long-term mortality, prescription of long-term oxygen therapy and chronic non-invasive ventilation (NIV). Clin Med (Lond)2012;12(2):188.Kaul S, et al. Non-invasive ventilation (NIV) in the clinical management of acute COPD in 233 UK hospitals: Results from the RCP/BTS 2003 national COPD audit. COPD2009;6(3):171–6.
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