Caring for children with a life-threatening or disabling chronic disorder is a challenge that affects, often adversely, the entire family. The prevalence of severe disabilities among children is increasing,1 with approximately 1 of 20 children having a severe disability.2 As this group has lived longer, filled more of the beds in children’s hospitals, and demanded increasing ambulatory medical attention, costs of care have increased. Costs to families have also escalated both economically and with regard to socioemotional development. Current child health systems have responded vigorously to the physical health challenges of chronic childhood disease but less consistently to the challenges of proactively supporting the wellness of patients and family members. Pediatric chronic care medicine must more effectively deliver interventions that promote family wellness and resilience. Disabling chronic disease can be viewed constructively as a serious adverse experience that is unrelenting for many patients and families. A recent international, multicenter study of parents of children with cystic fibrosis determined that 40% of mothers and almost 30% of fathers had elevated symptoms of anxiety and depression during the 3 years after diagnosis by newborn screening.3 Divorce, substance use, and other health problems in family members also interfere with family life and the ability to meet care needs of a child with chronic disease. Maintaining daily treatment regimens is overwhelming for many, particularly if they lack key executive functioning skills, such as organization, and the emotional and behavioral stamina to adhere to prescribed regimens. Lack of social support and economic resources magnifies the level of stress and ability of parents to respond to family and patient needs. Chronic care teams are often interdisciplinary and have the expertise to address a broad spectrum of family needs. However, the usual care model reacts to problems, whethermedical,emotional,orsocial,anddoesnotinclude a proactive focus on patient and family wellness. Introduction of the importance of family wellness at the time of diagnosis is not a routine component of care. Quality of life and health for all members of the family is not often prioritized as a target for care team interventions. Families of children with chronic disorders can be given tools for managing persistent or frequently recurring stress. For example, relaxation and mindfulness training have been shown to be effective, can be taught to parents and children, and have been used as an effective intervention to manage stress.4 Brief interventions that can be used in a timely mode in the home, work, or school setting are most likely to be helpful and sustained. Screening patients and family members for anxiety, depression, and other behavioral problems and providing behavioral support in chronic care programs directly or by referral can be extended in the current care model to identify and respond to risks for problems and to early subclinical problems. Promotion of essential parenting skills is increasingly recognized as effectively delivered in the health care setting5 and is as applicable in subspecialty as in primary care. What dimensions of family life might be addressed with wellness promotion and behavioral health risk prevention? Insufficient and/or poor sleep is well recognized for families of children with chronic diseases. Studies of parents of children who are receiving mechanical ventilation at home show a high rate of parental sleep deprivation, and parents of children with common conditions, such as eczema and asthma, also may often be sleep deprived.6 Reasons for inadequate sleep include nocturnal awakening by disorder symptoms, erosion of parent sleep time by care needs of the child, and factors such as worries about health, finances, or other family problems. Assessment of individualized need and interventions for family sleep deficits have potential for enhancing family quality of life and health and improving family coping capacity. Other dimensions of family life should also be considered in the chronic care model. Physical activity can be promoted using family-focused guidelines or programs to improve stamina, sleep, and strength. Nutrition is often neglected as the result of inadequate time, money, or energy to prepare wholesome meals and can be addressed by dietary counseling and instruction on healthy food preparation and establishing mealtime routines. School attendance and performance of children with chronic illness can also be a source of family stress and should be monitored by members of the health care team who can facilitate school accommodations that meet the health, academic, and social needs of the child. Siblings frequently receive less attention, especially during acute illness periods, and their cognitive and behavioral health is important to monitor. Positive wellness outcomes are likely to be achieved by creating a mutually respectful partnership between health care professionals and family. Creation of evidence for feasibility and effectiveness of wellness-promoting interventions will be essential. Outcomes must be compelling because addition of another component to the long list of targets already addressed in the chronic care model is likely to encounter resistance. Both initial acceptance and willingness to sustain these activities will be based on early perceptions of benefit and convincing evidence in outcomes studies. Evidence of cost-effectiveness will also be required to justify payer support for the inclusion of wellness in the chronic care model. As bundled, value-based payVIEWPOINT

中文翻译：

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慢性健康障碍儿童家庭的健康

照顾患有危及生命或致残的慢性疾病的儿童是一项挑战，通常会对整个家庭产生不利影响。儿童中重度残疾的患病率正在增加，1 20 名儿童中约有 1 人患有重度残疾。2 由于这一群体的寿命更长，儿童医院的床位越来越多，并且需要越来越多的门诊医疗，护理费用也随之增加。增加。在经济和社会情感发展方面，家庭的成本也在上升。当前的儿童卫生系统对慢性儿童疾病的身体健康挑战做出了积极的反应，但在积极支持患者和家庭成员的健康方面的挑战却不太一致。儿科慢性病护理医学必须更有效地提供促进家庭健康和复原力的干预措施。可以建设性地将慢性病致残视为一种严重的不良经历，对许多患者和家庭来说是无情的。最近一项针对囊性纤维化儿童父母的国际多中心研究确定，40% 的母亲和近 30% 的父亲在新生儿筛查诊断后的 3 年内出现焦虑和抑郁症状。 3 离婚、物质滥用和其他家庭成员的健康问题也会影响家庭生活和满足慢性病儿童护理需求的能力。维持日常治疗方案对许多人来说是压倒性的，特别是如果他们缺乏关键的执行功能技能，例如组织、以及遵守规定方案的情绪和行为耐力。缺乏社会支持和经济资源会放大父母应对家人和患者需求的压力和能力。慢性病护理团队通常是跨学科的，拥有满足广泛家庭需求的专业知识。然而，通常的护理模式对问题做出反应，无论是医疗、情感还是社会问题，并不包括对患者和家庭健康的积极关注。在诊断时介绍家庭健康的重要性并不是护理的常规组成部分。家庭所有成员的生活质量和健康质量通常不是护理团队干预的优先目标。可以为患有慢性疾病的儿童的家庭提供管理持续或经常反复出现的压力的工具。例如，放松和正念训练已被证明是有效的，可以教授给父母和孩子，并已被用作管理压力的有效干预措施。 4 可以在家庭、工作或学校适时使用的简短干预措施设置最有可能是有益的和持续的。筛查患者和家庭成员的焦虑、抑郁和其他行为问题，并直接或通过转诊在慢性病护理计划中提供行为支持，可以在当前的护理模式中扩展，以识别和应对问题的风险和早期的亚临床问题。越来越多地认识到，在医疗保健环境中有效地提供了基本的育儿技能5，并且在亚专科和初级保健中同样适用。健康促进和行为健康风险预防可以解决家庭生活的哪些方面？患有慢性病的儿童的家庭普遍认识到睡眠不足和/或睡眠不足。对在家中接受机械通气的儿童父母的研究表明，父母睡眠不足的比例很高，患有湿疹和哮喘等常见疾病的孩子的父母也可能经常睡眠不足。 6 睡眠不足的原因包括夜醒障碍症状、父母睡眠时间因孩子的照顾需求而减少，以及对健康、财务或其他家庭问题的担忧等因素。对家庭睡眠不足的个性化需求和干预措施的评估具有提高家庭生活质量和健康以及提高家庭应对能力的潜力。在慢性病护理模式中还应考虑家庭生活的其他方面。可以使用以家庭为中心的指导方针或计划来促进身体活动，以提高耐力、睡眠和力量。由于准备健康膳食的时间、金钱或精力不足，营养往往被忽视，可以通过膳食咨询和健康食品制备指导以及建立进餐时间来解决。患有慢性病的儿童的上学和表现也可能是家庭压力的一个来源，应由卫生保健团队的成员进行监测，他们可以促进满足儿童健康、学术和社交需求的学校住宿。兄弟姐妹经常受到较少的关注，尤其是在急性疾病期间，因此监测他们的认知和行为健康很重要。通过在医疗保健专业人员和家庭之间建立相互尊重的伙伴关系，可能会实现积极的健康结果。为促进健康的干预措施的可行性和有效性提供证据至关重要。结果必须令人信服，因为在长期护理模型中已经解决的一长串目标中添加另一个组件可能会遇到阻力。最初的接受度和维持这些活动的意愿都将基于对收益的早期认知和结果研究中令人信服的证据。还需要成本效益的证据来证明付款人支持将健康纳入慢性病护理模式的合理性。作为捆绑的，基于价值的payVIEWPOINT 为促进健康的干预措施的可行性和有效性提供证据至关重要。结果必须令人信服，因为在长期护理模型中已经解决的一长串目标中添加另一个组件可能会遇到阻力。最初的接受度和维持这些活动的意愿都将基于对收益的早期认知和结果研究中令人信服的证据。还需要成本效益的证据来证明付款人支持将健康纳入慢性病护理模式的合理性。作为捆绑的，基于价值的payVIEWPOINT 为促进健康的干预措施的可行性和有效性提供证据至关重要。结果必须令人信服，因为在长期护理模型中已经解决的一长串目标中添加另一个组件可能会遇到阻力。最初的接受度和维持这些活动的意愿都将基于对收益的早期认知和结果研究中令人信服的证据。还需要成本效益的证据来证明付款人支持将健康纳入慢性病护理模式的合理性。作为捆绑的，基于价值的payVIEWPOINT 最初的接受度和维持这些活动的意愿都将基于对收益的早期认知和结果研究中令人信服的证据。还需要成本效益的证据来证明付款人支持将健康纳入慢性病护理模式的合理性。作为捆绑的，基于价值的payVIEWPOINT 最初的接受度和维持这些活动的意愿都将基于对收益的早期认知和结果研究中令人信服的证据。还需要成本效益的证据来证明付款人支持将健康纳入慢性病护理模式的合理性。作为捆绑的，基于价值的payVIEWPOINT