Ebook Pediatric palliative care: Part 2
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Ebook Pediatric palliative care: Part 2
childrenMDPIArticleSupporting Parent Caregivers of Children with Life-Limiting IllnessKendra D. Koch * and Barbara L. JonesSteve Hicks School OÍ Socia Ebook Pediatric palliative care: Part 2al Work, University of Texas at Austin, 1925 San Jacinto Blvd., D.3500,Austin, fX 78712, USA; kirbardjvncs@muil.utexiis.edu* Correspondence: kdkoch@utcxus.edu; Tel.: tl 512 475 9367Received: 6 June 2018; Accepted: 20 June 2018; Published: 26 June 2018Abstract: The well-being of parents is essential Ebook Pediatric palliative care: Part 2to the well-being of children with life-limiting illness. Parents are vulnerable to a range of negative financial, physical, and psychosocial issues dEbook Pediatric palliative care: Part 2
ue to caregiving tasks and other stressors related to the illness OÍ their child. Pediatric palliative care practitioners provide good care to childrechildrenMDPIArticleSupporting Parent Caregivers of Children with Life-Limiting IllnessKendra D. Koch * and Barbara L. JonesSteve Hicks School OÍ Socia Ebook Pediatric palliative care: Part 2parent and family needs lor care coordination, respite, bereavement, and social and emotional support. No matter the design or setting of a pediatric palliative care team, practitioners can seek to provide lor parent needs by referral or intervention by the care learn.Keywords: palliative care; spec Ebook Pediatric palliative care: Part 2ial needs; parent; respite; life-limiting illness; caregiver; pediatric; psychosocial; stress; medically complex1Introduction: Available and Needed PeEbook Pediatric palliative care: Part 2
diatric Palliative Care ServicesPediatric palliative care (PPC) programs typically help children and families with decision-making, communication, psychildrenMDPIArticleSupporting Parent Caregivers of Children with Life-Limiting IllnessKendra D. Koch * and Barbara L. JonesSteve Hicks School OÍ Socia Ebook Pediatric palliative care: Part 2lliative care services has grown to include those who have lile-limiling, complex illnesses, recent research suggests that parents and families may need an expansion of these domains to include care coordination, respite, and education and support lor medical complexity J2J.As developments in treatm Ebook Pediatric palliative care: Part 2ent and lecluiology have led to prolonged life-spans lor children with life-threatening, complex, chronic conditions, patients and families have expreEbook Pediatric palliative care: Part 2
ssed a need for support in the broadest definition of palliative care beyond end-of-lile care [2 5J. Pediatric palliative care research anti practice childrenMDPIArticleSupporting Parent Caregivers of Children with Life-Limiting IllnessKendra D. Koch * and Barbara L. JonesSteve Hicks School OÍ Socia Ebook Pediatric palliative care: Part 2ld's life, from diagnosis to death, and all the life in between J2,6,7J.The American Academy of Pediatrics (AAP) recommends that patient- and family-centered care is an essential component of good pediatric palliative care practice [8Ị. Additionally, the International Meeting for Palliative Care in Ebook Pediatric palliative care: Part 2Children, Trento (IMPaCCT) standards developed by the 2006 consensus meeting of health professionals from Europe, Canada, the United States, and LebanEbook Pediatric palliative care: Part 2
on adopted the stance of the World Health Organization (WHO) that "Palliative care for children is the active total care of the child's body, mind andchildrenMDPIArticleSupporting Parent Caregivers of Children with Life-Limiting IllnessKendra D. Koch * and Barbara L. JonesSteve Hicks School OÍ Socia Ebook Pediatric palliative care: Part 2th Cancer and Their Families" [10J identified pediatric palliative care with an emphasis on care for the family, as one of its 15 essential standards of psychosocial care for children with cancer JI 1 J.Despite consensus, and although increasing in number and scope, Pediatric Palliative Care (PPC) s Ebook Pediatric palliative care: Part 2ervices internationally still do not meet the needs of many pediatric patients. International reviews ofChildren 2018, 5,85; doi:10.J39U/childri-n5ư7lEbook Pediatric palliative care: Part 2
X>85117www.mdpi.Com/journal/childrenChildren 2018, 5.85palliative care services find that even in countries with the most developed PPC programs, the childrenMDPIArticleSupporting Parent Caregivers of Children with Life-Limiting IllnessKendra D. Koch * and Barbara L. JonesSteve Hicks School OÍ Socia Ebook Pediatric palliative care: Part 2ices, lower- and middle-income countries are disproportionately challenged by lack of medical and financial resources, problems of access, lack of awareness of what PPC services offer, and lack of trained health can? and social workers. Proponents of PPC have developed a framework to overcome barrie Ebook Pediatric palliative care: Part 2rs which includes, (1) working at all levels from health centers to governments to increase advocacy and awareness; (2) educating health care and sociEbook Pediatric palliative care: Part 2
al work professionals at different levels of expertise from a general approach to a specialist level of pediatric palliative care; (3) continuing to achildrenMDPIArticleSupporting Parent Caregivers of Children with Life-Limiting IllnessKendra D. Koch * and Barbara L. JonesSteve Hicks School OÍ Socia Ebook Pediatric palliative care: Part 2ffering resource, geographic, cultural, and disease-specific need; and (5) prioritizing pragmatic and translational research that acknowledges the need for culturally- and regionally-specific studies to provide medical and social best practices for providers [12].Even in more integrated programs, re Ebook Pediatric palliative care: Part 2ferrals may be more likely to be made at the end-ol-lile and consider end-of-life concerns from the healthcare provider. Providers using a lifespan phEbook Pediatric palliative care: Part 2
ilosophy O1 palliative care would Oller more holistic care Hull is closer to the lime oi a child's diagnosis O1 a lile-tinea lening illness [15]. IllichildrenMDPIArticleSupporting Parent Caregivers of Children with Life-Limiting IllnessKendra D. Koch * and Barbara L. JonesSteve Hicks School OÍ Socia Ebook Pediatric palliative care: Part 2tinue to implement and refer to services that arc holistic, comprehensive, and timely. Screening instruments may also be used by providers to standardize referrals, increasing the likelihood that patients and families will have the benefit of palliative care support [16].Depending on the model ol th Ebook Pediatric palliative care: Part 2e pediatric palliative care service, healthcare professionals may not be able to directly provide needed services for families, however, PPG teams shoEbook Pediatric palliative care: Part 2
uld be prepared to intervene or offer referrals for issues that further stress families, even if they do not seem to be covered by the umbrella 01 wlichildrenMDPIArticleSupporting Parent Caregivers of Children with Life-Limiting IllnessKendra D. Koch * and Barbara L. JonesSteve Hicks School OÍ Socia Ebook Pediatric palliative care: Part 2en primary stressors for parent caregivers are addressed, including: (1) care coordination; (2) respite care; (3) peer and emotional support; (4) insurance and employment benefits; and (5) health and related supports [17]. Research outcomes for these five areas support (1) streamlining services and Ebook Pediatric palliative care: Part 2(2) minimizing the effects 01 caregiving burden. In addition, intervention research emphasizes healthy and intentional collaborations between healthcaEbook Pediatric palliative care: Part 2
re professionals and families [17],2Parents as CaregiversUnderstanding the types of caregiving that parents offer their children may help to guide thechildrenMDPIArticleSupporting Parent Caregivers of Children with Life-Limiting IllnessKendra D. Koch * and Barbara L. JonesSteve Hicks School OÍ Socia Ebook Pediatric palliative care: Part 2 medical, and emotional [18]. Instrumental, personal, and informational support are social supports. Instrumental caregiving, also known as instrumental activities of daily living (1ADL) are those supports that allow a person (in this case a child) to live and engage in community'. For example, goin Ebook Pediatric palliative care: Part 2g to schEbook Pediatric palliative care: Part 2
to the social well-being of the child. Personal caregiving or personal activities of daily living (also known as habilitation) include those tasks of childrenMDPIArticleSupporting Parent Caregivers of Children with Life-Limiting IllnessKendra D. Koch * and Barbara L. JonesSteve Hicks School OÍ Socia Ebook Pediatric palliative care: Part 2ng is generally managing information, medical or otherwise, for issues that need to be addressed by the person for whom the caregiver is caring. Although, this generally applies to geriatric populations. Medical decision-making, information on diagnosis, can? coordination, and other information-spec Ebook Pediatric palliative care: Part 2ific exchanges might be the pediatric equivalent of this caregiving type. Emotional caregiving is what it seems—it is the care provided to the child tEbook Pediatric palliative care: Part 2
o address emotional needs. In the world of children who receive ITC services, emotional care may reflect more specifically a parent's need to address childrenMDPIArticleSupporting Parent Caregivers of Children with Life-Limiting IllnessKendra D. Koch * and Barbara L. JonesSteve Hicks School OÍ Socia Ebook Pediatric palliative care: Part 2ks associated with medical care, for example: changing a g-tube, tube feeding, suctioning, administering nebulizer treatments, managing a tracheostomy, adhering to a medicine regimen, positioning a child, or monitoring seizure activity 118]. Often overlooked is self-care. Self-care is a factor in ca Ebook Pediatric palliative care: Part 2regiving because it promotes that caregivers also prioritize their own care. For many caregivers, this domain is the easiest to overlook. Primary careEbook Pediatric palliative care: Part 2
givers may react with amusement or anger to suggestions that they care for themselves, because for them the word "care" implies not an affective stateGọi ngay
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