Cline and Greene's Parenting children with health issues: essential guidance (original) (raw)
Related papers
The experience of parenting children with chronic health conditions: a new reality
Journal of Nursing and …, 2010
The experience of parenting children with chronic health conditions: a new reality Aim. This study was undertaken to synthesise recent qualitative literature in the years 2000 to 2009, exploring the phenomenon of parents' experiences of parenting a child with one or more chronic health conditions. Background. The experience of parenting children with chronic health conditions has been predominantly studied by examining the effects of specific illnesses such as sickle cell anaemia and cystic fibrosis. While the chronic conditions may differ, the parents of children with any chronic illness appear to experience similar phenomena as they care for and parent their affected children. Method. Metasynthesis is an exacting process of analysis of focused qualitative research results aimed at advancing knowledge and concept development through the synthesis and summation of themes and concepts extracted from the included studies.
Care for Families of Children with Chronic Disease
2018
Objective: to know what has been produced about the care provided for families of children with chronic disease. Method: integrative review that sought to survey the publications of the last 10 years in the MEDLINE, LILACS, BDENF, INDEX PSICOL databases and in the virtual library SciELO. After reading the selected articles, we analyzed data of the studies regarding authorship, objectives, year of publication, method and level of evidence. Results: the findings led to two thematic categories << Facing the diagnosis of a chronic disease, change of habits and family reorganization >> and << Care routines of families with children with chronic conditions >>. Conclusion: Families of children with chronic diseases have their routines modified, often losing control over their lives. We believe that if families are well informed about the pathology and if they are empowered to care for the child, they will be able to develop autonomy over the organization of their li...
Integrating Parents of Children with Special Health Care Needs into the Pediatric Medical Home
2017
The medical home is an approach to providing comprehensive and coordinated care to children and families, including those impacted by special health care needs (CSHCN); it supports families with both medical and non-medical needs. Connecting families to non-medical community support services is challenging for many clinical providers. The Parent Partner Program was designed to train parents of CSHCN to work in their community pediatricians’ practices and help other families of CSHCN navigate clinical and social support services. The Parent Partner Program was implemented in eight pediatric primary care clinics across Montana and Wyoming in 2012. Three surveys were implemented to investigate the perceptions of participating providers, Parent Partners, and parents. The surveys indicated medium to high levels of satisfaction with the Parent Partner Program among all stakeholder groups. Despite limited perceived family awareness, the program has shown early successes in providing emotio...
Pediatrics in Review, 2007
Background Advances in the care of children who have chronic illness have allowed many more children to survive and live longer. Although there are many definitions of chronic illness, the American Academy of Pediatrics (AAP) has endorsed the broad definition proposed by the Maternal and Child Health Bureau (MCHB), which defines children who have special health care needs (CSHCN) as "those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally." (1) For the purposes of this article, we define CSHCN broadly by adopting this MCHB definition. CSHCN does not encompass just those children who have complex disorders or who require technology; children who have attention-deficit/hyperactivity disorder, diabetes, emotional disorders, and autism also can be included in this broad definition. CSHCN are estimated to comprise 13% of the pediatric population and account for 70% of pediatric health-care expenditures. Based on the MCHB definition and the prevalence of CSHCN, all child health clinicians will care for children who have special health-care needs at some time during their practice experiences. Good evidence shows that care for CSHCN delivered in specialized centers can improve clinical outcomes, as measured by hospitalizations, emergency department use, and detection of rare complications. Unfortunately, such speciality centers frequently are confined to academic centers that may be far from the community in which CSHCN and their families reside. The specialized care may be inaccessible to many families because of such barriers as language, culture, distance, cost, and transportation. There also is evidence that some of the basic primary care needs of CSHCN and families may not be well addressed in these subspecialty settings. (2) Primary care physicians and families who find themselves caring for increasing numbers of CSHCN often have inadequate support and knowledge of community resources and limited capacity for care coordination. Recognizing this paradox, the AAP advocates that care for all children, including CSHCN, be provided in a medical home. (3) The medical home requires a partnership between physicians and families and collaboration with the community. Although the medical home may be based in a specialist's office, it most often is based in the child's primary care office. The primary care office may offer advantages such as being located in the child's community and having a clinician who knows the child's family and is able to provide continuity of care as well as coordination with schools and local community resources. What is a Medical Home? Why is it Needed? The AAP defines care given in the context of a medical home as care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective. A medical home is not a structure or a building; rather, it is an approach and philosophy to providing care. A medical home is a partnership with families that promotes access to all of the services and community supports necessitated by their children's care. The medical home approach does not simply entail change on an individual level, with physicians single-handedly working harder or faster. Rather, providing a medical home requires change on a systems level, including practice changes as well as improved communication and collaboration with families, schools, specialists, and community agencies.
Strategies of Families in the Care of Children with Chronic Diseases
Texto & Contexto - Enfermagem, 2015
ABSTRACTthis study aimed to know the strategies of families in the care of children with chronic diseases. A descriptive and exploratory research was carried out using a qualitative approach, in a Pediatric Unit of a university hospital in the south of Brazil, during the first and second halves of 2013. The study involved 15 participating families. Data were collected by means of interviews subjected to thematic analysis. It was identified as strategies: balance work, study and care, share tasks throughout the day, adapt the physical area of the house, engage the child in their own care, seek resources in the network of social support and faith, seek assistance in another city; and engage in physical activity to reduce stress. It was concluded that it is necessary that the nurses participate of the family support network, as a support source for the strengthening of the family to the care, acquiring skills and expertise to a positive coping of the child's chronic disease.
Patient- and Family-Centered Care and the Pediatrician's Role
Pediatrics, 2012
Drawing on several decades of work with families, pediatricians, other health care professionals, and policy makers, the American Academy of Pediatrics provides a definition of patient- and family-centered care. In pediatrics, patient- and family-centered care is based on the understanding that the family is the child’s primary source of strength and support. Further, this approach to care recognizes that the perspectives and information provided by families, children, and young adults are essential components of high-quality clinical decision-making, and that patients and family are integral partners with the health care team. This policy statement outlines the core principles of patient- and family-centered care, summarizes some of the recent literature linking patient- and family-centered care to improved health outcomes, and lists various other benefits to be expected when engaging in patient- and family-centered pediatric practice. The statement concludes with specific recommen...
Living with a rare disease - experiences and needs in pediatric patients and their parents
Orphanet Journal of Rare Diseases, 2023
Background A rare disease (RD) diagnosis and therapy can affect the family's quality of life and mental health. A lack of information and missing care options lead to helplessness and psychological stress within families. This work aims to identify patients' and parents' experiences in daily life and with the health care system as well as their needs and current pathways to psychosocial care to develop implementation strategies adapted to the families' needs. Methods The present analysis is part of the national multicenter study "Children Affected by Rare Disease and Their Families-Network (CARE-FAM-NET). " We conducted semi-structured telephone interviews with children, adolescents, and young adults with RD (aged 12 to 21 years) and parents of children with RD (aged 0 to 17 years). We analyzed the transcribed and anonymized interviews using the method of focused interview analyses to identify previous experiences with medical and psychosocial care and possible needs for improvement and support. Results Seventy-four parents of children with RD and 15 children, adolescents, and young adults with RD participated. Five main themes emerged. Daily life with an RD: RD affects the everyday and social life of the respondents, negatively impacting mental well-being. Experiences with the health care system: The long diagnostic path is stressful for families. Professionals' lack of information/education leads to inadequate care for those affected. Psychosocial support: Families do not know about psychosocial care services. In some cases, the families take advantage of psychosocial support services (such as support groups or advocacy groups), which are predominantly very helpful. Difficulties and barriers: Time, socio-legal and organizational problems burden families and lead to advantages in using psychosocial services. Improvements for patient-oriented support: Those affected wished for timely, preventive support (especially in administrative and socio-legal matters) and education regarding psychosocial care services. Conclusion RD represent a great challenge for all family members-patients, parents, and siblings. The patients' and parents' previous experiences in daily life, medical and psychosocial care show a need for target-group specific support, including training of health care professionals and low-threshold access care services and practical help for all family members.