Journal articles: 'Chronically ill children Care'

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Fox, Harriette B., and Paul W. Newacheck. "Private Health Insurance of Chronically III Children." Pediatrics 85, no. 1 (January 1, 1990): 50–57. http://dx.doi.org/10.1542/peds.85.1.50.

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Accurate information regarding the adequacy of private health insurance coverage available to the families of chronically ill children is scarce. A national survey was conducted of firms offering health insurance to employees and their dependents. Data were collected concerning private health insurance coverage of services needed by chronically ill children, including basic medical care services, ancillary therapies, mental health services, and long-term care. Nearly all surveyed firms offered health insurance. Coverage of inpatient hospital care, outpatient physician services, medical supplies and equipment, x-ra y stuies, laboratory services, and prescription medications was widespread, but coverage of services such as physical therapy, speech therapy, occupational therapy, and nutrition services was much less prevalent. More than two thirds of the firms covered comprehensive home health services but often with limits and only in lieu of more expensive inpatient care. Longterm care, such as skilled nursing home care, was covered by only one third of firms. Overall, the survey results, combined with information concerning recent trends in private health insurance, reveal increasing coverage of lower cost alternatives to hospital or institutional care and improved maximum lifetime benefits and stop-loss coverage but also increased cost-sharing requirements. These results suggest that, although families with chronically ill children may have access to a widening range of services such as home health care or individual benefits management, they may be forced to bear an increasing proportion of the cost.

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Moura, Flávia Moura de, Áderson Luiz Costa Júnior, Meryeli Santos de Araújo Dantas, Gilvan da Cruz Barbosa Araújo, and Neusa Collet. "Playful intervention with chronically-ill children: promoting coping." Revista Gaúcha de Enfermagem 35, no. 2 (June 2014): 86–92. http://dx.doi.org/10.1590/1983-1447.2014.02.41822.

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Chronic diseases can adversely affect the development process of children. This qualitative, action-research study had the aim to analyze the effects of activities in the manual "Como Hóspede no Hospital" (As a patient in the hospital) on the coping process of children with chronic diseases. Study participants included six children and adolescents aged seven to 13 years, who suffered from a chronic disease. Data were collected in the pediatric clinic of a public hospital in the Brazilian state of Paraíba, through participant observation and individual sessions with activities from the manual. Data interpretation followed the principles of thematic analysis. The activities from the manual encouraged participants' search for information about their disease and treatment, and increased their interest and participation in their health care process, thereby contributing to better coping. The study points to the need for comprehensive care for children with chronic diseases.

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Newacheck, Paul W., Dana C. Hughes, Jeffrey J. Stoddard, and Neal Halfon. "Children With Chronic Illness and Medicaid Managed Care." Pediatrics 93, no. 3 (March 1, 1994): 497–500. http://dx.doi.org/10.1542/peds.93.3.497.

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Incorporating these suggestions would necessitate a significant commitment of funds and other resources on the part of federal and state governments. This level of commitment is necessary if children with chronic conditions from low-income families are to receive appropriate care and their sponsors receive fair value. However, attending to the suggestions made in this commentary—while necessary—will not automatically assure that chronically ill children receive the services they need. All too often the emphasis of Medicaid managed care is on managing costs rather than managing care. It is only through a more enlightened perspective—one that places a greater emphasis on what is best for children and a lesser emphasis on what is best for budgets—that chronically ill children will receive the care they deserve.

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Piette, John D., Ann Marie Rosland, Maria Silveira, Mohammed Kabeto, and Kenneth M. Langa. "The case for involving adult children outside of the household in the self-management support of older adults with chronic illnesses." Chronic Illness 6, no. 1 (March 2010): 34–45. http://dx.doi.org/10.1177/1742395309347804.

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Objectives: This study sought to (1) identify barriers to spousal support for chronic illness self-care among community-dwelling older adults; and (2) describe the potential availability of self-care support from adult children living outside of the household. Methods: Nationally representative US sample of chronically ill adults aged 51+ were interviewed as part of the Health and Retirement Study (N = 14,862). Both participants and their spouses (when available) reported information about their health and functioning. Participants also reported information about their contact with adult children and the quality of those relationships. Results: More than one-third (38%) of chronically ill older adults in the US are unmarried; and when spouses are available, the majority of them have multiple chronic diseases and functional limitations. However, the vast majority of chronically ill older adults (93%, representing roughly 60 million Americans) have adult children, with half having children living over 10 miles away. Most respondents with children (78%) reported at least weekly telephone contact and that these relationships were positive. Roughly 19 million older chronically ill Americans have adult children living at a distance but none nearby; these children are in frequent telephone contact and respondents (including those with multiple chronic diseases) report that the relationships are positive. Discussion: As the gap between available health services for disease management and the need among community-dwelling patients continues to grow, adult children—including those living at a distance—represent an important resource for improving self-care support for people with chronic diseases.

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Plisková, Barbora, and Petr Snopek. "Primary School Teachers’ Awareness of Chronic Diseases of Children." Acta Educationis Generalis 7, no. 3 (December 20, 2017): 111–21. http://dx.doi.org/10.1515/atd-2017-0028.

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Abstract Introduction: More and more children and adolescents suffering from chronic diseases are included in common school education. Unfortunately, teachers do not feel confident enough about how to cope, fulfil and satisfy the needs of these children in the educational, social and emotional spheres. The aim ofp this part of research was to discover how teachers work with chronically ill children of younger school-age. There were three aims. The first aim was to investigate if teachers have basic awareness and knowledge about selected chronic diseases in children of younger school-age. The second aim was to discover what experience and attitudes towards chronically ill children of younger school-age teachers have. The third aim was to discover, how the quality of school care of chronically ill children of younger school-age can be improved. Methods: We used qualitative research methodology. Data were processed and gathered from semi-structured interviews. Interviews were conducted with 12 teachers. Results: Our findings revealed that teachers should be acquainted with the disease itself and its consequences in all aspects. In some cases, teachers must be acquainted also with the practical aspects of a chronic disease, e.g. first aid and application of drugs and aids in order to assist children if necessary. Discussion: The study offers unique insights into primary teachers’ views and experiences with chronically ill children, how teachers work with chronically ill pupils of younger school-age and how the quality of school care of chronically ill children of younger school-age can be improved. Limitations: The research is still being conducted and therefore, it is not possible to provide more detailed results and conclusions. However, our main aim was to draw attention to the very problem from the point of view of teachers themselves and to highlight their vivid experiences. Conclusions: It is necessary to create interconnected networks of experts and families who will cooperate and communicate and who will participate in satisfying needs of a child together. These networks will ensure that children will be integrated into common school life in spite of their disease without serious consequences affecting their development and education.

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Johnson, Emmanuel Janagan, and Samantha Onieka Mendoza. "Care-giving Coping Strategies Among Mothers with Chronically Ill Children." Journal of Social Service Research 44, no. 3 (May 27, 2018): 400–413. http://dx.doi.org/10.1080/01488376.2018.1476289.

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Brill, Nancy, Sarale Cohen, Mary Fauvre, Nancy Klein, Sue Clark, and Linda Garcia. "Caring for Chronically Ill Children: An Innovative Approach for Care." Children's Health Care 16, no. 2 (September 1987): 105–13. http://dx.doi.org/10.1207/s15326888chc1602_6.

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Fauman, Karen R., Kenneth J. Pituch, Yong Y. Han, Matthew F. Niedner, Janella Reske, and Ann Marie LeVine. "Predictors of Depressive Symptoms in Parents of Chronically Ill Children Admitted to the Pediatric Intensive Care Unit." American Journal of Hospice and Palliative Medicine® 28, no. 8 (March 30, 2011): 556–63. http://dx.doi.org/10.1177/1049909111403465.

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Objective: To identify factors in the pediatric intensive care unit (PICU) patient population that may result in increased risk of depressive symptoms in their parents. Design: Six-month, prospective, observational study in a tertiary-level PICU on parents of chronically ill children admitted to PICU. Parents were assessed by background questionnaire and standardized depression scale. Results: Data was compared to various markers such as child’s diagnosis, admission reason, palliative care diagnosis type (ACT code), and course/length of disease. Incidence of depressive symptoms in parents was inversely correlated with duration of child’s chronic illness. Parents of children admitted for planned postoperative management were more likely to report depressive symptoms compared to parents of children admitted for acute changes in health. Conclusion: Parents of certain chronically ill children may benefit from routine screening for depression.

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Mukhida, K. "67. Loving your child to death: Considerations of the care of chronically-ill children and euthanasia in Emil Sher's Mourning Dove and implications for medical educations." Clinical & Investigative Medicine 30, no. 4 (August 1, 2007): 65. http://dx.doi.org/10.25011/cim.v30i4.2828.

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How do parents cope when their child is ill or dying, when he or she experiences constant pain or suffering? What do parents think of the contributions that medical professionals make to the care of their chronically or terminally ill child? Is it possible for a parent to love a child so much that the child is wished dead? The purpose of this paper is to explore those questions and aspects of the care of chronically or terminally ill children using Mourning Dove’s portrayal of one family’s attempt to care for their ill daughter. A play written by Canadian playwright Emil Sher, Mourning Dove is based on the case of Saskatchewan wheat farmer Robert Latimer who killed his 12 year old daughter Tracy who suffered with cerebral palsy and lived in tremendous pain. Rather than focusing on the medical or legal aspects of the care of a chronically ill child, the play offers a glimpse into how a family copes with the care of such a child and the effects the child’s illness has on a family. Reading and examination of non-medical literature, such as Mourning Dove, therefore serve as a useful means for medical professionals to better understand how illness affects and is responded to by patients and their families. This understanding is a prerequisite for them to be able to provide complete care of children with chronic or terminal illnesses and their families. Nuutila L, Salanterä S. Children with long-term illness: parents’ experiences of care. J Pediatr Nurs 2006; 21(2):153-160. Sharman M, Meert KL, Sarnaik AP. What influences parents’ decisions to limit or withdraw life support? Pediatr Crit Care Med 2005; 6(5):513-518. Steele R. Strategies used by families to navigate uncharted territory when a child is dying. J Palliat Care 2005; 21(2):103-110.

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Dubé, Eve, Dominique Gagnon, Caroline Huot, Renée Paré, Solange Jacques, Alexandra Kossowski, Caroline Quach, and Monique Landry. "Influenza immunization of chronically ill children in pediatric tertiary care hospitals." Human Vaccines & Immunotherapeutics 10, no. 10 (October 3, 2014): 2935–41. http://dx.doi.org/10.4161/21645515.2014.970498.

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Johnston, Emily E., Erin R. Currie, Yanjun Chen, Erin E. Kent, Katherine A. Ornstein, Smita Bhatia, J. Nicholas Dionne-Odom, and Abby R. Rosenberg. "Palliative Care Knowledge and Characteristics in Caregivers of Chronically Ill Children." Journal of Hospice & Palliative Nursing 22, no. 6 (September 18, 2020): 456–64. http://dx.doi.org/10.1097/njh.0000000000000685.

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Günüşen, Neslihan Partlak, Marian Wilson, and Burcu Aksoy. "Secondary Traumatic Stress and Burnout Among Muslim Nurses Caring for Chronically Ill Children in a Turkish Hospital." Journal of Transcultural Nursing 29, no. 2 (January 30, 2017): 146–54. http://dx.doi.org/10.1177/1043659616689290.

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Purpose: This study investigated secondary traumatic stress and its relationship to burnout among nurses working at a Turkish hospital. Design: A mixed-methods design included a cross-sectional survey administering the Professional Quality of Life instrument and Maslach Burnout Inventory to 106 nurses. Interviews with a subgroup of eight participants explored nurses’ experiences and coping strategies related to caring for chronically ill pediatric patients. Results: High risk levels of secondary traumatic stress existed among 40.6% participants, and those over the age of 40 years were at greater risk. Two main interview themes emerged that identified (a) consequences and (b) coping strategies while caring for chronically ill children. Nurses experience emotional burdens and may purposefully distance themselves from chronically ill children. Social support from nurse colleagues and spiritual beliefs assist coping. Implications: Workplaces should acknowledge stressors inherent in chronic pediatric nursing care. Environments that welcome spiritual practices and actively encourage social support could address job hazards.

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Krener, Penelope. "Parent Salvage and Parent Sabotage in the Care of Chronically Ill Children." Archives of Pediatrics & Adolescent Medicine 142, no. 9 (September 1, 1988): 945. http://dx.doi.org/10.1001/archpedi.1988.02150090043020.

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Hall, Barry L. "The Role of Adult Children in Helping Chronically Ill Hospitalized Parents." Canadian Journal on Aging / La Revue canadienne du vieillissement 8, no. 1 (1989): 68–78. http://dx.doi.org/10.1017/s071498080001120x.

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ABSTRACTThe study identified the types of help provided by 27 adult children to their hospitalized chronically ill parents. The investigation further examined the child's helping behavior in relation to stress and strain, as well as dependence of the parent on the child. The results demonstrated that despite profound stress and strain felt by children, they still provided a range of helping behaviors within the formal caregiving structures of the acute care hospital. Dependence was a weak indicator of the adult child's helping behavior, while stress was a stronger indicator.

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Hall, Barry L. "Families of the Hospitalized Elderly: Untapped Resources." Canadian Journal of Community Mental Health 9, no. 1 (April 1, 1990): 179–89. http://dx.doi.org/10.7870/cjcmh-1990-0013.

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Many acute-care hospital beds are increasingly being occupied by chronically ill older persons. The hospital health-care team must begin to view the family of elderly patient along with their community contacts as an important resource in the delivery of services. A questionnaire was mailed to 27 adult children to determine the type of help they provide to their hospitalized chronically ill elderly parents. The results indicate that adult children are a major resource for the older person. Despite the formal caregiving structures of the hospital the adult child provides the most amount of help in the areas of psychological support, personal care, and bureaucratic mediation services. Not only do adult children provide help to the parent inside the hopsital, but through tasks carried out on behalf of the parent outside of the hospital they are able to maintain the elderly parent's link to their community network. This involvement offers many therapeutic opportunities for professional staff to link hospital resources with the resources of the community-based family.

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Wright-Sexton, Laura, Carrie Henderson, and CAROLINE COMPRETTA. "868: PICU PROVIDER PERCEPTIONS OF ISOLATION IN CAREGIVERS OF CHRONICALLY CRITICALLY ILL CHILDREN." Critical Care Medicine 46, no. 1 (January 2018): 418. http://dx.doi.org/10.1097/01.ccm.0000528877.15395.16.

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Ross-Degnan, Dennis, Stephen B. Soumerai, Jerry Avorn, Rhonda L. Bohn, Rosalie Bright, and Louis M. Aledort. "Hemophilia Home Treatment: Economic Analysis and Implications for Health Policy." International Journal of Technology Assessment in Health Care 11, no. 2 (1995): 327–44. http://dx.doi.org/10.1017/s0266462300006930.

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AbstarctThis analysis describes the development of technology for home self-infusion of factor VIII in the treatment of hemophilia and its clinical, economic, and social consequences, and uses the case study of such home care treatment to illustrate the potentials and pitfalls of formal economic analyses of programs to treat chronically ill children. A comprehensive review of all original data on hemophilia programs, their related costs, and outcomes, conducted from 1966 through 1993, examined the economic outcomes for two hypothetical cohorts, one aged 0–4 years and the other aged 30–34 years. Including the measurement of treatment effects on the productivity of parental caregivers substantially increases the benefit-cost relationship of an intervention directed at chronically ill children. Increased economic productivity and societal return resulting from such a program for young adults exceeds those for a cohort of children, primarily due to assumptions related to discounting. However, estimation of quality-adjusted life years favors the younger age cohort, since children survive for a longer period of time and with each year survived comes a higher quality of life. Unlike simpler instances in which economic benefits can be shown to outweigh resource costs, policy decisions concerning services for chronically ill children raise an additional set of complex analytic issues. Inclusion of the benefits in productivity experienced by family caregivers provides an important added dimension to such analyses. The development of cost-benefit or cost-effectiveness analyses of these programs illustrates the importance of careful measurement of outcomes and explicit statements of underlying assumptions. Such an analysis of home care for children with hemophilia therefore demonstrates both the strengths and the limitations of this approach.

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Chesler, Mark A. "Guest Editorial: Active Roles for Parents in the Care of Chronically Ill Children." Children's Health Care 14, no. 1 (June 1985): 4–5. http://dx.doi.org/10.1207/s15326888chc1401_1.

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Meltzer, Lisa J., and Suzanne Bennett Johnson. "Summer Camps for Chronically Ill Children: A Source of Respite Care for Mothers." Children's Health Care 33, no. 4 (December 2004): 317–31. http://dx.doi.org/10.1207/s15326888chc3304_5.

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Notaras, Elizabeth, Diana Keatinge, James Smith, Judith Cordwell, Dianne Cotterell, and Elizabeth Nunn. "Parents' perspectives of health-care delivery to their chronically ill children during school." International Journal of Nursing Practice 8, no. 6 (December 2002): 297–304. http://dx.doi.org/10.1046/j.1440-172x.2002.00383.x.

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Miller, Bruce D. "Promoting healthy function and development in chronically ill children: A primary care approach." Family Systems Medicine 13, no. 2 (1995): 187–200. http://dx.doi.org/10.1037/h0089248.

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Davis, Anne J., and Ida Martinson. "Care for chronically ill children and elderly in the People's Republic of China." Nursing and Health Sciences 1, no. 4 (December 1999): 229–33. http://dx.doi.org/10.1046/j.1442-2018.1999.00029.x.

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Sanderson, Brittney, and Doug Henry. "Learning from Parents of Children with Childhood Asthma." Practicing Anthropology 41, no. 1 (January 1, 2019): 43–47. http://dx.doi.org/10.17730/0888-4552.41.1.43.

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Abstract Families of children with asthma have to shoulder immense burdens as part of care, and yet the social science literature on their experiences is not well developed or up-to-date. As part of a class project in Anthropology and Public Health, we interviewed eleven parents about their experiences with a chronically ill child and uncovered important themes about emotions, learning, assessments of risk, and control. We assert that asking parents about their experiences providing and monitoring and care can provide important data that could inform asthma management programs in the establishment of better support, education, and care.

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Sterling, Yvonne M. "Chronically Ill Children and Their Families/issues an the Care of Children With Chronic Illness (book)." Children's Health Care 16, no. 4 (March 1988): 299–300. http://dx.doi.org/10.1207/s15326888chc1604_10.

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Denova, L. D., D. D. Ivanov, R. R. Andrunevich, O. M. Korzh, and E. K. Krasyuk. "Nephrological care in the conditions of martial law in Ukraine." KIDNEYS 11, no. 3 (September 24, 2022): 122–35. http://dx.doi.org/10.22141/2307-1257.11.3.2022.372.

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During armed conflicts (AC) and other disasters, the elderly, women, children, the infirm and the chronically ill patients are the most vulnerable population, with a high risk to health and life. Chronically ill people with kidney diseases, including those with kidney failure, deserve special attention due to their complete dependence on available functional infrastructure, and access to vital drugs and well-trained personnel. Currently, there is little information on the effects of AC on patients with kidney damage compared to the available data about the effects of other disasters. Mechanisms of injuries in AC and natural or man-made disasters have similar and distinctive features. Distinctive features: during AC — mainly gunshot and mine blast injuries, bleedings, poisonings by toxic substances, during disasters — hypothermia or burns, mechanical injuries, etc. Similar features include damage to infrastructure, particularly health care facilities, shortage of medicines, medical personnel, humanitarian and other crises, and a large number of injured and traumatized people in the hospitals. In this article, we systematized the material obtained during the military conflict, as well as reviewed domestic and foreign articles on this topic in order to optimize the work of nephrologists in the conditions of martial law and limited resources.

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McLoone, Jordana, Claire E. Wakefield, Glenn M. Marshall, Kristine Pierce, Adam Jaffe, Ann Bye, Sean E. Kennedy, Donna Drew, and Raghu Lingam. "It’s made a really hard situation even more difficult: The impact of COVID-19 on families of children with chronic illness." PLOS ONE 17, no. 9 (September 1, 2022): e0273622. http://dx.doi.org/10.1371/journal.pone.0273622.

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Objective For over two years, the global COVID-19 pandemic has forced major transformations on health, social, and educational systems, with concomitant impacts on mental health. This study aimed to understand the unique and additional challenges faced by children with chronic illness and their families during the COVID-19 era. Method Parents of children receiving treatment for a chronic illness within the neurology, cancer, renal and respiratory clinics of Sydney Children’s Hospital were invited to participate. We used qualitative methodology, including a semi-structured interview guide, verbatim transcription, and thematic analysis supported by QSR NVivo. Results Thirteen parents of children receiving tertiary-level care, for nine chronic illnesses, participated. Parents reported intense fears relating to their ill child’s additional vulnerabilities, which included their risk of developing severe COVID-19 disease and the potential impact of COVID-19-related disruptions to accessing clinical care, medications, allied health support and daily care protocols should their parent contract COVID-19. Parents perceived telehealth as a highly convenient and preferred method for ongoing management of less complex healthcare needs. Parents reported that the accrual of additional stressors and responsibilities during the pandemic, experienced in combination with restricted social interaction and reduced access to usual support networks was detrimental to their own mental health. Hospital-based visitation restrictions reduced emotional support, coping, and resilience for both parents and children and in some cases led to marital discord, sibling distress, and financial loss. Supportive factors included increased time spent together at home during the pandemic and improved hygiene practices at school, which dramatically reduced the incidence of non-COVID-19-related communicable illnesses in chronically ill children. Discussion For families caring for a chronically ill child, COVID-19 made a difficult situation harder. The pandemic has highlighted the need for targeted psychosocial intervention for vulnerable families, to mitigate current mental health burden and prevent chronic psychological distress.

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Sharkey, Tracy. "The Effects of Uncertainty in Families With Children Who Are Chronically Ill." Home Healthcare Nurse: The Journal for the Home Care and Hospice Professional 13, no. 4 (July 1995): 37–45. http://dx.doi.org/10.1097/00004045-199507000-00006.

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Martinez, Natalie Harris, Mary Louise Schreiber, and Ellyn Wade Hartman. "Pediatric nurse practitioners: Primary care providers and case managers for chronically ill children at home." Journal of Pediatric Health Care 5, no. 6 (November 1991): 291–98. http://dx.doi.org/10.1016/0891-5245(91)90003-9.

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O’Mahony, Sean, James Gerhart, Ira Abrams, Michelle Greene, Rory McFadden, Sara Tamizuddin, and Mitchell M. Levy. "A Multimodal Mindfulness Training to Address Mental Health Symptoms in Providers Who Care for and Interact With Children in Relation to End-of-Life Care." American Journal of Hospice and Palliative Medicine® 34, no. 9 (July 21, 2016): 838–43. http://dx.doi.org/10.1177/1049909116660688.

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Aim: Medical providers may face unique emotional challenges when confronted with the suffering of chronically ill, dying, and bereaved children. This study assessed the preliminary outcomes of participation in a group-based multimodal mindfulness training pilot designed to reduce symptoms of burnout and mental health symptoms in providers who interact with children in the context of end-of-life care. Methods: A total of 13 medical providers who care for children facing life-threatening illness or bereaved children participated in a 9-session multimodal mindfulness session. Mental health symptoms and burnout were assessed prior to the program, at the program midpoint, and at the conclusion of the program. Results: Participation in the pilot was associated with significant reductions in depressive and posttraumatic stress disorder (PTSD) symptoms among providers ( P < .05). Conclusion: Mindfulness-based programs may help providers recognize and address symptoms of depression and PTSD. Additional research is needed to enhance access and uptake of programming among larger groups of participants.

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Cook, Barbara A., Jeffrey P. Krischer, and Randy Kraft. "Health care provider and family acceptance of a rural community-based nursing service for chronically ill children." Journal of Community Health 11, no. 2 (June 1986): 98–110. http://dx.doi.org/10.1007/bf01321511.

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Glad-Timmons, Jenni, and Teddie Potter. "Communication With Patients and Families as a Global Determinant of Health: Lessons From Care of Children With Special Health Care Needs." Creative Nursing 22, no. 4 (2016): 276–82. http://dx.doi.org/10.1891/1078-4535.22.4.276.

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Until recently, patients and families were not considered by all providers to be valued members of the health care team. Many providers made decisions away from the bedside and then told the patient and family what they could expect from the plan of care. This top-down approach is not limited to one country or culture but reflects an attitude prevalent in biomedicine around the globe. However, the paradigm is beginning to shift. Skyrocketing health care costs have prompted value-based purchasing, in which third-party payment is linked to patient outcomes and satisfaction. Providers and health care organizations are scrambling for evidence-based models to improve communication and other satisfaction-related criteria. This article proposes that teaching patients and families use of the Situation/Background/Assessment/Recommendations (SBAR) tool, traditionally used among health care professionals, will improve communication, enhance patient and family satisfaction, and potentially improve patient outcomes overall. The SBAR4Patients project demonstrates the positive impact SBAR can have on parents of chronically ill children.

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Lukemeyer, Anna, Marcia K. Meyers, and Timothy Smeeding. "Expensive Children in Poor Families: Out-of-Pocket Expenditures for the Care of Disabled and Chronically Ill Children in Welfare Families." Journal of Marriage and Family 62, no. 2 (May 2000): 399–415. http://dx.doi.org/10.1111/j.1741-3737.2000.00399.x.

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Bernard, Didem S. M., Stacy L. Farr, and Zhengyi Fang. "National Estimates of Out-of-Pocket Health Care Expenditure Burdens Among Nonelderly Adults With Cancer: 2001 to 2008." Journal of Clinical Oncology 29, no. 20 (July 10, 2011): 2821–26. http://dx.doi.org/10.1200/jco.2010.33.0522.

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Purpose To compare the prevalence of high out-of-pocket burdens among patients with cancer with other chronically ill and well patients, and to examine the sociodemographic characteristics associated with high burdens among patients with cancer. Methods The sample included persons 18 to 64 years of age who received treatment for cancer, taken from a nationally representative sample of the US population from the 2001 to 2008 Medical Expenditure Panel Survey. We examined the proportion of persons living in families with high out-of-pocket burdens associated with medical spending, including insurance premiums, relative to income, defining high health care (total) burden as spending more than 20% of income on health care (and premiums). Results The risk of high burdens is significantly greater for patients with cancer compared with other chronically ill and well patients. We find that 13.4% of patients with cancer had high total burdens, in contrast to 9.7% among those with other chronic conditions and 4.4% among those without chronic conditions. Among nonelderly persons with cancer, the following were associated with higher out-of-pocket burdens: private nongroup insurance, age 55 to 64 years, non-Hispanic black, never married or widowed, one child or no children, unemployed, lower income, lower education level, living in nonmetropolitan statistical areas, and having other chronic conditions. Conclusion High burdens may affect treatment choice and deter patients from getting care. Thus, although a detailed patient-physician discussion of costs of care may not be feasible, we believe that an awareness of out-of-pocket burdens among patients with cancer is useful for clinical oncologists.

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BULL, MARGARET J. "Interventions for Women As Family Caregivers." Annual Review of Nursing Research 19, no. 1 (January 2001): 125–42. http://dx.doi.org/10.1891/0739-6686.19.1.125.

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Family caregivers are the mainstay of long-term care, as they enable chronically ill elders and children to remain at home. The majority of family caregivers are women and historically their caregiving role has been viewed as an extension of their roles as wife and mother. Although numerous studies report the stresses associated with family caregiving and are predictors of burden, less attention has been given to interventions for family caregivers. The objective of this review is to examine reports of interventions to reduce family caregiver burden, to consider their implications for nursing practice, and to identify directions for future nursing research.

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Sočan, Gregor, Katja Groleger Sršen, Gaj Vidmar, and Anton Zupan. "Model-based validation of the Slovenian 20-item version of the Measure of Processes of Care." European Journal for Person Centered Healthcare 5, no. 1 (May 23, 2017): 88. http://dx.doi.org/10.5750/ejpch.v5i1.1220.

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Rationale and aims: The Measure of Processes of Care (MPOC-20) is a self-administered questionnaire for parents of chronically ill or disabled children to report on their experiences of the care process. The aim of this study was to investigate the construct validity of the Slovenian adaptation of MPOC-20. Method: One hundred and seventy-four parents of children with a chronic illness/disability, treated at 7 public healthcare institutions in Slovenia, completed MPOC-20 and a questionnaire about their child, themselves and their family. Results: The slightly modified measurement model fitted well to the data. The model was then extended into a structural regression model, which included several predictors of MPOC-20 latent factors. The child’s gender and the presence of a key worker emerged as the most relevant predictors. Conclusions: We propose a small change in the scoring of MPOC-20. The presence of a key worker improves the parents’ evaluation of the processes of care for their child.

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Correale, C., M. Di Pastena, I. Tondo, F. Milo, F. Santato, G. Amodeo, T. Grimaldi Capitello, F. Vigevano, and S. Cappelletti. "Prevalence of depressive and anxiety symptoms in chronically ill children and adolescents during COVID-19 pandemic and lockdown: Preliminary findings of a pediatric hospital in Italy." European Psychiatry 64, S1 (April 2021): S272. http://dx.doi.org/10.1192/j.eurpsy.2021.731.

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Introduction Psychological problems are common among the pediatric population suffering from a chronic illness, especially compared to the normal population. Stressful life events, such as social distancing measures implemented to counter the COVID-19 pandemic emergency, can strongly influence their epidemiology.ObjectivesThe aim of this study was to assess the prevalence rate of depressive and anxiety symptoms among an Italian pediatric population affected by chronic illness and already under a Children Hospital psychological follow-up program during COVID-19 lockdown.MethodsWe conducted a cross-sectional study among 54 Italian children and adolescents affected by chronic illness (mean age: 15y; range: 8.9-18y) during the COVID-19 epidemic period. We assessed depressive and anxiety symptoms with the Patient Health Questionnaire (PHQ-9) and the Generalized Anxiety Disorders (GAD-7) questionnaire during scheduled follow-up checks or teleconsulting.ResultsPreliminary results showed an elevated prevalence of depressive and anxiety symptoms (51% and 48% respectively) among chronically ill children during the COVID-19 outbreak. When compared with a non-ill pediatric population (Zhou et al. 2020), rates are + 7.3% higher for depression and + 10.6% for anxiety.ConclusionsChronic ill pediatric patients are a vulnerable group and require careful consideration. For this reason, the healthcare system should be able to implement and guarantee adequate mental health support programs and continuity of care. Further research is necessary since the COVID-19 outbreak could be repeated.

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Tamlyn, Deborah, and Margaret M. Arklie. "A Theoretical Framework for Standard Care Plans: A Nursing Approach for Working with Chronically Ill Children and Their Families." Issues in Comprehensive Pediatric Nursing 9, no. 1 (January 1986): 39–45. http://dx.doi.org/10.3109/01460868609094394.

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Ranade-Kharkar, Pallavi, Charlene Weir, Chuck Norlin, Sarah A. Collins, Lou Ann Scarton, Gina B. Baker, Damian Borbolla, Vanina Taliercio, and Guilherme Del Fiol. "Information needs of physicians, care coordinators, and families to support care coordination of children and youth with special health care needs (CYSHCN)." Journal of the American Medical Informatics Association 24, no. 5 (March 24, 2017): 933–41. http://dx.doi.org/10.1093/jamia/ocx023.

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Abstract Objectives: Identify and describe information needs and associated goals of physicians, care coordinators, and families related to coordinating care for medically complex children and youth with special health care needs (CYSHCN). Materials and Methods: We conducted 19 in-depth interviews with physicians, care coordinators, and parents of CYSHCN following the Critical Decision Method technique. We analyzed the interviews for information needs posed as questions using a systematic content analysis approach and categorized the questions into information need goal types and subtypes. Results: The Critical Decision Method interviews resulted in an average of 80 information needs per interview. We categorized them into 6 information need goal types: (1) situation understanding, (2) care networking, (3) planning, (4) tracking/monitoring, (5) navigating the health care system, and (6) learning, and 32 subtypes. Discussion and Conclusion: Caring for CYSHCN generates a large amount of information needs that require significant effort from physicians, care coordinators, parents, and various other individuals. CYSHCN are often chronically ill and face developmental challenges that translate into intense demands on time, effort, and resources. Care coordination for CYCHSN involves multiple information systems, specialized resources, and complex decision-making. Solutions currently offered by health information technology fall short in providing support to meet the information needs to perform the complex care coordination tasks. Our findings present significant opportunities to improve coordination of care through multifaceted and fully integrated informatics solutions.

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Fernandez, A. S. "A Comparative Study on the Levels of Anxiety of Pediatric Oncology Patients With and Without Exposure to the Kythe Child Life Program." Journal of Global Oncology 4, Supplement 2 (October 1, 2018): 114s. http://dx.doi.org/10.1200/jgo.18.44500.

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Background: In the Philippines, there is a growing number of young children diagnosed with life-limiting illnesses. A survey conducted by the Philippine Cancer facts and estimates (2006) found out that some 3500 Filipino children are diagnosed with cancer yearly. However, there is a dearth of hospital-based programs that aim at addressing the psychosocial needs of pediatric chronically ill patients and their families. Aim: The study looked at the level of anxiety of school-aged children with hematologic and oncologic illnesses exposed to a hospital-based child life program for at least six months, as well as, those of school-aged children with hematologic and oncologic illnesses who have not had any exposure to a hospital-based child life program. A comparison was made between the levels of anxiety of the two groups. The study aims to show the value of a hospital-based psychosocial program and hypothesized that chronically ill children exposed to the services of a hospital-based child life program have lower levels of anxiety compared with the children who have not had any exposure to such. Methods: This quantitative, quasi-experimental study employing a posttest only group design, compared the levels of anxiety of 80 children ages 5-11 years old diagnosed with hematologic and oncologic illnesses who were exposed to a hospital-based child life program for at least six months against those of children with hematologic and oncologic illnesses who have not had any exposure to such a program. The Child Drawing: Hospital, a validated and reliable tool used to provide a measure of the anxiety level of the hospitalized child as expressed by the child himself was used. Results: Using independent t-test to analyze the data, the levels of anxiety between the two groups show a significant difference. Results show that children who have been exposed to a hospital-based child life program had low levels of anxiety while those who have not had exposure to the such a program had average to high levels of anxiety. Conclusion: Children who have access to the services of a hospital-based child life program experienced significantly lower levels of anxiety as compared with their counterparts who are not exposed to such a program. The results support the value of child life services and, as such, should be considered an integral part of quality pediatric health care and essential in family-centered care and best-practice models of health care delivery for children.

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Burayzat, Salma M., Muna Kilani, Redab Al-Ghawanmeh, Mohnad Odeh, Omar Assi, and Karem H. Alzoubi. "Evaluation of the Effect Coronavirus Lockdown had on Chronic Disease Management Care in Pediatrics: A Survey of Jordanian Pediatricians." International Journal of Clinical Practice 2022 (October 6, 2022): 1–7. http://dx.doi.org/10.1155/2022/8710176.

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The outbreak of the COVID-19 pandemic puts a great strain on the healthcare system, as the national and global infection rates increased rapidly. Efforts were devoted to minimizing the effects of the spreading pandemic without overwhelming the already stretched healthcare system. The study objective was to establish how coronavirus lockdown was affecting chronic disease care among pediatric patients admitted to hospitals in developing countries. For that purpose, a cross-sectional survey of registered pediatricians was carried out. Findings showed that the mortality rate from COVID-19 in children seemed to be low. However, children with chronic illnesses were likely to be gravely affected by the disturbance of repetitive healthcare services. About 79% of pediatricians treated a child with a chronic condition during the lockdown. Furthermore, 15% of patients with chronic diseases visiting pediatricians exhibited uncontrolled emerging complications. In addition, 9% of pediatricians reported one to five fatalities among children under their care due to delay or lack of appropriate medical care in the period of the lockdown. Residents (48.9%) reported a significantly (p < 0.001) higher proportion of providing face-to-face services compared with consultants (17.9%) and specialists (13.6%). In conclusion, the care of chronically ill children should be taken into consideration when implementing lockdown and/or social distancing, thus minimizing the negative effects of lockdown and/or social distancing on children with chronic diseases.

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McNab, Justin, Janis Paterson, Joanne Fernyhough, and Rod Hughes. "Role of the GP liaison nurse in a community health program to improve integration and coordination of services for the chronically ill." Australian Journal of Primary Health 22, no. 2 (2016): 123. http://dx.doi.org/10.1071/py14089.

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This paper explores the role of the General Practitioner Liaison Nurse (GPLN) in improving integration and coordination of services within Primary Health Care. This position can play a major role in care coordination and cultural change. The GPLN within HealthOne Mt Druitt (HOMD) identifies patients’ needs and facilitates communication, case conferencing and care coordination between health and other providers. The priority areas of children and their families at risk or with significant unmet needs, and chronic aged and complex care, were identified as target areas. This paper focuses on the GPLN within the chronic aged and complex care service model. The GPLN within HOMD was able to improve coordination and integration of services for patients of the facility. Activities included organising multidisciplinary services and addressing psychosocial issues. Patients and community health staff identified the importance of the role for improving coordination and integration of services. Decision and policy makers saw the position as vital to the implementation, operation and sustainability of HOMD.

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Vonneilich, Nico, Daniel Lüdecke, and Christopher Kofahl. "The impact of care on family and health-related quality of life of parents with chronically ill and disabled children." Disability and Rehabilitation 38, no. 8 (June 23, 2015): 761–67. http://dx.doi.org/10.3109/09638288.2015.1060267.

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Mukhida, Karim. "Loving your child to death: Considerations of the care of chronically ill children and euthanasia in Emil Sher's Mourning Dove." Paediatrics & Child Health 12, no. 10 (December 2007): 859–65. http://dx.doi.org/10.1093/pch/12.10.859.

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Alonso, Windy Williams, Lisa A. Kitko, and Judith E. Hupcey. "Intergenerational Caregivers of Parents With End-Stage Heart Failure." Research and Theory for Nursing Practice 32, no. 4 (November 2018): 413–35. http://dx.doi.org/10.1891/1541-6577.32.4.413.

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Purpose:The purpose of this study was to longitudinally explore the experiences of young adult, adult, and older adult intergenerational caregivers caring for a parent with end-stage heart failure (HF).Design:This study was a secondary analysis of qualitative data collected during a longitudinal study that sought to determine the palliative care needs of individuals with end-stage HF and their family caregivers.Methods:Longitudinal interviews from 23 young adult, adult, and older adult children who were caring for a parent with end-stage HF were selected for thematic analysis. Researchers individually analyzed the interviews and then, as a group, came to a consensus about themes.Findings:Five major themes were identified: caregiver resources, role management, caregiver–parent relationships, filial responsibility, andpersonal benefits and challenges.Conclusions:These intergenerational caregivers struggled to balance their busy lives and caregiving roles. However, most felt supported by other family members or external resources. Longitudinal findings support a need for improved employer-based support for intergenerational caregivers and special attention to young carers in research and practice. Recognition of and advocacy for intergenerational caregivers providing care for a chronically ill parent is needed.

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Harris, Tomika, and Cheryl L. Samuels. "Comprehensive Care for High-Risk Chronically Ill Children Utilizing Pediatric Nurse Practitioners in an Enhanced Medical Home: A Randomized Control Trial." Journal of Pediatric Health Care 29, no. 4 (July 2015): 312–13. http://dx.doi.org/10.1016/j.pedhc.2015.04.004.

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Guragain, Parth, Hem Sagar Rimal, and Tara Kumari Kafle. "Knowledge, Attitude and Practice of Care Givers with Children Under Five Years of Age about Vaccination in Sunsari District, Nepal." Birat Journal of Health Sciences 4, no. 2 (September 4, 2019): 702–6. http://dx.doi.org/10.3126/bjhs.v4i2.25464.

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Introduction: Immunization has shown major preventive aspects of infectious diseases, disability and death. Care giver is a person who provides direct care for children, elder people and chronically ill. Objectives: To assess the Knowledge, Attitude and Practice (KAP) of caregivers in Sunsari district about vaccination of under five children brought for vaccination at different private and government vaccination centers. Methodology: It is a cross sectional study that was carried out among 100 care givers from different places of Sunsari district for 3 months. The care givers completed a semi structured questionnaire that contains 4 different parts about the demographics, knowledge, attitude and practice of care givers toward immunization. Results: Most of the care givers have high level of awareness and importance of vaccination, which shows positive attitude and practice. The overall KAP was good among most of the caregivers (87.2%). The higher KAP level was positive associated with female gender, higher educational degree and having higher number of children. Conclusion: Most of caregivers from three different places of Sunsari districts had good KAP (in sense that most of the caregivers have awareness for quality and basic health standard) towards immunization which was associated with female gender and higher educational degrees. However, educational programs like community awareness and mobilizing Female Community Health Volunteers for providing appropriate knowledge of vaccination which increases the caregivers' knowledge, which might have change cognitive behavior. This study reflects the overall knowledge of caregivers towards immunization process which is very essential in childhood for prospective healthy future of the child.

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Richardson, Frank J., Richard C. Baker, and Robert Kastenbaum. "Development, Reliability, and Validity of the Children's Questions about Death Scale." OMEGA - Journal of Death and Dying 36, no. 4 (January 1, 1997): 343–57. http://dx.doi.org/10.2190/3ux3-591n-wybc-w6g8.

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Most measures of parent-child communication about death are specific only to families of chronically ill children. In contrast, The Children's Questions About Death Scale (CQADS) was constructed to assess how effectively mothers respond to questions about death that their healthy children are likely to ask them. The CQADS originated from a pool of 237 questions that mothers ( N = 116) reported they had been asked by their children regarding death. Final item selection was determined by categorizing the questions using four categories (essence, intentionality, loss of relationship, and self-oriented) and selecting a representative set of four items in each category that demonstrated adequate response variability and inter-rater agreement. The scoring criteria for the CQADS were established on the basis of expert opinion in the literature. Operationally defined scoring criteria were developed so that mothers' written responses to each of the questions on the CQADS could be rated for effectiveness on a scale from 1 ( not at all effective) to 5 ( very effective). Total scores could range from 16 to 80, with higher scores indicating greater effectiveness in responding to children's questions about death. The CQADS has excellent test-retest reliability ( r = .95, p < .05), and inter-rater reliability greater than .80.

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Rodríguez-Rieiro, Cristina, Mª Felicitas Domínguez-Berjón, María D. Esteban-Vasallo, Luis Sánchez-Perruca, Jenaro Astray-Mochales, Domingo Iniesta Fornies, Dolores Barranco Ordoñez, and Rodrigo Jiménez-García. "Vaccination coverage against 2009 seasonal influenza in chronically ill children and adults: Analysis of population registries in primary care in Madrid (Spain)." Vaccine 28, no. 38 (August 2010): 6203–9. http://dx.doi.org/10.1016/j.vaccine.2010.07.013.

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Mambelli, Lorenzoiara, Agnese Menghi, Camilla Lama, and Federico Marchetti. "Il vissuto di bambini e adolescenti con artrite idiopatica giovanile." Medico e Bambino 39, no. 10 (December 15, 2020): 638–41. http://dx.doi.org/10.53126/meb39638.

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Chronically ill children show an increased risk of developing a psychological-psychiatric disorder, with an important impact on their quality of life. The paper describes all the cases of Juvenile Idiopathic Arthritis (JIA) in the Paediatric Rheumatology Unit in Ravenna with documented psychological-behavioural problems. 23% of juvenile idiopathic arthritis patients have psychological-behavioural problems and 9% have requested cognitivebehavioural therapy, with good results. One of the most significant aspects is the treatment with methotrexate (MTX), which is an important drug in the management of JIA cases and, as it is known, is burdened with side effects such as malaise and vomiting, even before its intake. Half of the patients on MTX therapy show this "intolerance", which sometimes also leads to the voluntary withdrawal of the drug. Therefore, an anticipatory approach to these issues and an adequate and timely psychological care are increasingly necessary.

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Andrews, Susan Good. "Informing Schools About Children's Chronic Illnesses: Parents' Opinions." Pediatrics 88, no. 2 (August 1, 1991): 306–11. http://dx.doi.org/10.1542/peds.88.2.306.

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Parents of 217 chronically ill children and adolescents were surveyed concerning their opinions about disclosing medical information to schools. The sample consisted of parents of more than one third of the children and adolescents meeting inclusion criteria who were seen at a university-based pediatric clinic during a 10-week period. Parents were asked (1) whether schools need information about 16 health items, (2) who in the school should know, and (3) who should provide this information. Parents' willingness to disclose information was compared with family and child demographic data. Parents strongly believed that (1) teachers need to be informed and (2) parents should be the primary informers. The consensus that schools need information did not vary with family and child demographics. However, parents of children with poor illness prognosis, greater likelihood of emergencies, and visible illnesses were more supportive of disclosure. Most parents indicated that physicians should provide information on 10 of the 16 items. Physicians were viewed as particularly appropriate informers about recognizing emergencies and medication effects. Only 21% of the parents were aware of any prior contact between the medical care giver and the school concerning their child's illness. Thus, parents want schools informed and believe physicians should be involved in providing information.

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Journal articles on the topic 'Chronically ill children Care'

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