Parental perceptions of health care for children with chronic illness--a population-based study in a Swedish primary care district.

The division of responsibilities between specialized and primary health care for children with chronic illness is unclear. The utilization and perceptions of primary and specialized care were examined by means of a questionnaire mailed to the parents of all chronically ill children and a randomly selected control group. No difference in sociodemographic variables of responders (70%) and nonresponders was found. The study comprised 98 index and 168 control children. The index children utilized both primary and specialized care more than controls. The overall satisfaction with health care was high, but primary care did not come up to the expectations of many chronically ill children's parents. Satisfaction with specialized care but not with primary care had improved during the previous 15 years. Recognition in primary care of childhood chronic illnesses and their psychosocial consequences is important. In co-operation, the two health care levels together could enable a comprehensive, well-coordinated, and continuous care for these children.     

Managing Chronic Disease in Affordable Primary Care

National agencies are calling for quality improvement in primary care health care services and across the United States health care system. Changes would be directed toward improving quality of life for the chronically ill and decreasing their financial burden and that placed on society. Nurse practitioners, based on their expertise and preparation in patient education, are ideal health care providers to establish partnerships with motivated, informed, chronically ill patients and to promote change in health care policy, guidelines, and meeting patient educational needs. Within worksite primary care, nurse practitioners can, through the Chronic Care Model framework, provide chronic disease management and affordable health care access.     

Health Care Utilization and Costs Associated With Pediatric Chronic Pain

The population prevalence of pediatric chronic pain is not well characterized, in part because of a lack of nationally representative data. Previous research suggests that pediatric chronic pain prolongs inpatient stay and increases costs, but the population-level association between pediatric chronic pain and health care utilization is unclear. We use the 2016 National Survey of Children's Health to describe the prevalence of pediatric chronic pain, and compare health care utilization among children ages 0 to 17 years according to the presence of chronic pain. Using a sample of 43,712 children, we estimate the population prevalence of chronic pain to be 6%. In multivariable analysis, chronic pain was not associated with increased odds of primary care or mental health care use, but was associated with greater odds of using other specialty care (odds ratio [OR]?=?2.01, 95% confidence interval [CI] = 1.62–2.47; P?<?.001), complementary and alternative medicine (OR?=?2.32, 95% CI = 1.79–3.03; P?<?.001), and emergency care (OR?=?1.62, 95% CI = 1.29–2.02; P?<?.001). In this population-based survey, children with chronic pain were more likely to use specialty care but not mental health care. The higher likelihood of emergency care use in this group raises the question of whether better management of pediatric chronic pain could reduce emergency department use.

Parents' perspectives of health-care delivery to their chronically ill children during school

This study sought to identify parents' perspectives about issues relating to the provision of health care to their chronically ill children while they are at school. A survey of parents with school-aged children attending the paediatric subspecialty outpatients clinic in a large teaching hospital was designed to collect both qualitative and quantitative data about this topic. Findings included that 48% (n =161) of parents participating in the study said their child required some form of care or attention while at school. Highest scoring areas of need included supervision of meals (36%), administering insulin (19%), and administering nebulizers/puffers (19%). In addition, 75% of parents with children requiring health care while in school said that special knowledge and skill was required to deliver this care; 56% of these parents did not feel that teachers had the knowledge that would enable them too look after their chronically ill child during school hours.     

The impact of care on family and health-related quality of life of parents with chronically ill and disabled children

Purpose: Parents of disabled and/or chronically ill children are more vulnerable regarding their health compared to parents of healthy children. This study examines how far the burden of care is associated with health-related quality of life (QoL) in parents, across different illnesses and disabilities. Moreover, it is unclear whether and to which extent familial resources can explain the association between parents’ care burden and health. Method: Data stem from a survey with the German Children’s Network, a self-help umbrella organization of parents and families of chronically ill and disabled children. Data collection was conducted nationwide with a standardized online questionnaire, which included children’s diagnoses and severity, burden of care, family and socioeconomic status, health-related QoL (SF-12) and family impact (Impact on Family Scale, IFS). 1567 parents participated. Results: A higher burden of care is associated with higher risks for poor health-related QoL. Especially, social impact and financial burden, which are both associated with care, can help to explain these associations. Conclusions: Future interventions should focus not only on the affected child but also on the whole family system and its social integration, as this seems likely to relief parents from burden of care. Therefore, a sustainable cooperation of health care institutions and professionals with self-help groups and parental initiatives is recommended.

• Implications for Rehabilitation

• Parents of disabled and chronically ill children are a vulnerable group regarding their health-related quality of life.

• A higher burden of care is associated with less social contacts, higher financial burden and higher help-needs in the household, which significantly contribute to higher health risks.

• Rehabilitation should take these constraints into account and put a stronger focus on the family of disabled and chronically ill children to support their inclusion.

• A sustainable and formally anchored collaboration with self-help and patient groups is recommended.

     

Awareness of parental illness: a grounded theory of upholding family equilibrium in parents on long-term sick-leave in primary health care

ObjectiveTo understand the main concern of chronically ill parents and how they resolve this concern in relation to their children.DesignGrounded theory.SettingThree primary health care clinics in Sweden.SubjectsThirty-two interviewed parents and their children.Main outcome measuresProcesses and typologies of upholding family relationships.ResultsA concern of chronically ill parents is sustaining family equilibrium, achieved through a process of upholding family relationships. How a parent upholds depends upon his/her comprehension of the illness and of their child’s need for parenting. In response to the parent’s upholding behaviours, children mirror the effect of the illness to the parent, the child’s specific behaviour depending on his/her level of comprehension regarding the parent’s illness. Their combined behaviours create an awareness context that may be closed, concealed, suspicious, conflicted, mutual pretence or open.When the parent drives and facilitates the evolution of comprehension, the context quickly evolves from closed to open. When the parent hinders the process by masking and resisting the child responds by probing and proving and they become locked into a suspicious or conflicted awareness context with high relational tension. To create family equilibrium the parent needs to reveal and facilitate the awareness process.ConclusionParents on long-term sick leave in primary health care can need assistance to facilitate the awareness context of themselves and their child.Implications: Clinicians can identify the current awareness context of their patient and help their patient towards increased understanding of their illness; their child’s needs and the parental capacities needed to reveal the illness and its impacts.

Key Points

• Children are affected when parents are ill; they wish for information on their parent’s illness. Effective interventions are available in settings other than primary health care and possibilities seen by GPs and families in Scandinavian primary health care have been previously described. There is a knowledge gap in how parents view themselves and their parenting when ill in primary health care. An analysis grounded in interviews was needed to generate a hypothesis (theory) of parental concerns and behaviours.
• This theory proposes that an important concern of chronically ill parents is to sustain family equilibrium, which they attempt to do by upholding family relationships.
• Specific upholding behaviours include masking, resisting, colluding, and revealing. In response, children will engage in mirroring behaviours. Which paired behaviours are enacted will depend upon the respective levels of comprehension of parent and child regarding the illness and on the child’s need for parenting. In their interactions, parent and child create one of six awareness contexts.
• Identifying the current awareness context in the family about chronic parental illness provides clinicians with a conceptual tool to better support those families locked in suspicious or conflicted awareness contexts.

     

Impact of chronic illness in children on parental living conditions. A population-based study in a Swedish primary care district.

In a geographically defined child population aged 0-15, every twelfth child suffered from chronic illness. Their parents and randomly selected control children's parents were asked about their living conditions using questionnaires. Non-responders (30%) had the same sociodemographic profile as responders. The socioeconomic level in index families (n = 95) was lower than in control families (n = 166). Both parents worked fewer hours in index than in control families. Index mothers had more health problems and sick days than control mothers. The parents' social relations were most hampered by having children with allergic disorders or mental retardation. Despite reduced hours, more absence from work to care for sick children, and reduced leisure activities, two thirds of the parents of moderately/severely disabled children found it difficult to cater adequately to the needs of their child. A family approach is recommended to provide comprehensive care of children with chronic illness, in which both specialized and primary care are needed.     

Nurse Care Coordination in Community-Based Long-Term Care

PURPOSE: To evaluate the clinical outcomes of a nurse care coordination program for people receiving services from a state-funded home and community-based waiver program called Missouri Care Options (MCO). DESIGN: A quasi-experimental design was used to compare 55 MCO clients who received nurse care coordination (NCC) and 30 clients who received MCO services but no nurse care coordination. METHODS: Nurse care coordination consists of the assignment of a registered nurse who provides home care services for both the MCO program and Medicare home health services. Two standardized datasets, the Minimum Data Set (MDS) for resident care and planning and the Outcome Assessment Instrument and Data Set (OASIS) were collected at baseline, 6 months, and 12 months on both groups. Cognition was measured with the MDS Cognitive Performance Scale (CPS), activities of daily living (ADL) as the sum of five MDS ADL items, depression with the MDS-Depression Rating Scale, and incontinence and pressure ulcers with specific MDS items. Three OASIS items were used to measure pain, dyspnea, and medication management. The Cochran-Mantel-Haenszel (CMH) method was used to test the association between the NCC intervention and clinical outcomes. FINDINGS: At 12 months the NCC group scored significantly better statistically in the clinical outcomes of pain, dyspnea, and ADLs. No significant differences between groups were found in eight clinical outcome measures at 6 months. CONCLUSIONS: Use of nurse care coordination for acute and chronic home care warrants further evaluation as a treatment approach for chronically ill older adults.     

Development of My Health Companion© to Enhance Self‐Care Management of Chronic Health Conditions in Rural Dwellers

ABSTRACT Appropriate self‐management support is needed to help individuals and their families meet the challenges of living with chronic health conditions. Such support is characterized by productive interactions between informed, active individuals, and their health care providers. The purposes of this paper are to describe the challenges to achieving self‐management support and a tool, My Health Companion^© (MHC), which was developed to meet that challenge. The MHC is a paper personal health record designed to help rural women with chronic health conditions to better manage and understand their health information. The selection of content for the MHC was based on the literature, input from health care experts, and chronically ill individuals, and its development incorporated principles of personal health record and clear communication. The MHC was anecdotally shown to be useful to rural women with chronic health conditions in preparing for and enhancing their visits with health care providers. As a source of information, the MHC had potential for: being beneficial to providers in recommending appropriate treatment; contributing to more informed health decision making by ill individuals; and serving as a vehicle for the establishment of more productive interactions that contributed to the achievement of true client‐provider partnerships in health care.     

Parenting foster children with chronic illness and complex medical needs

The experience of parenting foster children with chronic illness and complex medical needs was explored in a phenomenological inquiry with 10 foster families. Thirteen participants currently fostering chronically ill children with complex medical needs were interviewed. Recorded interviews were transcribed and analyzed using van Manen's method. Data analysis yielded five essential themes: Foster parents described being committed to the child in their care, coming to know the needs of a medically complex foster child, and identifying effective and ineffective interventions encountered through day-to-day living with a medically complex child. Furthermore, they shared what it was like to experience loss of a child through relinquishment and death. Last, for these parents, fostering children with complex health care needs was a life-changing experience. The findings show that parenting a chronically ill foster child with complex medical needs is a multifaceted experience having implications for multiple disciplines.     

Care of patients with chronic obstructive pulmonary disease in primary health care

Aim.  This paper is a report of a study of nurses' perceptions of caring for patients with chronic obstructive pulmonary disease.
Background.  Chronic obstructive pulmonary disease is a global health problem and the number of patients being treated with this disease in primary healthcare settings is increasing. This places new demands on the nurses involved.
Method.  A phenomenographic approach was adopted, using a purposive sample. Data were generated between February and May 2003 from 20 interviews with district nurses and general nurses who cared for patients in primary healthcare settings with chronic obstructive pulmonary disease.
Findings.  In most cases, nurses cared for older people with moderate to severe chronic obstructive pulmonary disease. They described this care from two overall orientations: task and individual. The nurses' perceptions of the care of these patients were described as creating commitment and participation by establishing a good relationship with patients and supporting them in their personal care, educating patients by supplying information and knowledge in various ways, co-operation by co-operating with or referring to other caregivers, and arranging and implementing clinical examinations and treatments.
Conclusion.  The type of care depended on who the patient met: either a task-oriented nurse or an individual-oriented nurse. Therefore, nursing programmes should pay special attention to the support and guidance of new and inexperienced and task-oriented nurses. Healthcare planners should take into consideration the need for individualized care when organizing care and allocating resources for chronically ill people.     

The impact of managed care enrollment on emergency department use among children with special health care needs

BACKGROUND: Many states recently have experimented with managed care as a way both to control costs and to enhance continuity of care in their publicly financed programs. A few states have applied managed care models to the care of chronically ill children. One marker for the effects of managed care is changes in use of the emergency department (ED). OBJECTIVE: We sought to determine whether a managed care program can reduce ED use for children with chronic health problems. SUBJECTS: We studied chronically ill children who were dually enrolled in Michigan's Title V program for children with special health care needs and Medicaid and who were enrolled in a managed care option at some time during the study period. The managed care model emphasized care coordination and did not include strong financial incentives for utilization and cost control. Sample consisted of 8580 person-months. METHOD: We used a fixed-effect negative binomial Poisson regression model to compare ED use before and after joining a managed care plan to test whether managed care use was associated with reduced likelihood of ED use. RESULTS: Managed care enrollment was associated with a 23% reduction in the incidence of ED use among children dually enrolled in Medicaid and Title V. CONCLUSIONS: A managed care model is associated with statistically significant and substantive reductions in observed use of ED care within an important population of children facing chronic illness.     

Communication Patterns of Primary Care Pediatricians,Parents, and Children with and Without Special Health Care Needs

The purpose of this study was to compare the communication patterns of pediatricians with parents of children with special health care needs (CSHCN) and parents of healthy children to explore whether there were significant differences in communication patterns and satisfaction. Ten pediatricians were audiotaped during 97 outpatient medical encounters. Analyses of variance (ANOVAs) were used to examine communication patterns based on children’s health status. Results showed that although pediatricians did not differ in their frequencies of communications, parents of CSHCN contributed more medical-related information and had higher rates of social exchanges and questions than parents of healthy children. CSHCN also participated more than healthy children. Children’s health status did not influence pediatrician or parent satisfaction ratings of the visit. Pediatricians’ satisfaction ratings were higher in medically oriented encounters, whereas parents’ satisfaction ratings were not related to communication patterns. The results of this study underscore the role of parents of CSHCN in communicating medical information, as well as the importance of pediatrician–family relationships to families of CSHCN.     

. . . on Foster Care International Society of Psychiatric-Mental Health Nurses

PROBLEM:  Mental health problems are particularly widespread for foster children. There are approximately 700,000 youth in foster care and nonfamily settings in the United States. The mean entry age is 3 years. The average stay is 2 years. Experts estimate that between 30% and 85% of youngsters in out-of-home care have significant emotional disturbances. Foster care children represent 5% of Medicaid enrollees but use approximately 40% of Medicaid funds. A substantial number of these children have psychological problems so serious that they require residential placement. Adolescents living with foster parents or in group homes have about four times the rate of serious psychiatric disorders than those living with their own families (2009a). Despite this level of need, less than one-third of children in the child protective system are receiving mental health services (2009a).
SOURCES:  Child psychiatric nurse advocates from the Association of Child and Adolescent Psychiatric Nurses Division of the International Society of Psychiatric-Mental Health Nurses compiled this position statement for adoption by the Board of Directors as the Association's formal statement on the plight of children and adolescents in foster care.
CONCLUSIONS:  Areas that need to be addressed include (a) lack of consistent and comprehensive service planning; (b) communications across agencies and with the youth, their foster parents, and key stakeholders; (c) use of evidence-based interventions to prevent and reduce the incidence of disability; (d) education of child welfare case workers about mental and emotional therapeutic management; and (e) education of foster parents and youth about mental health issues and appropriate treatments.     

Individual care plans for chronically ill patients within primary care in the Netherlands: Dissemination and associations with patient characteristics and patient-perceived quality of care

Objective. To examine the use of individual care plans (ICPs) within primary chronic illness care in the Netherlands, and to explore the relationships between ICP use, patient characteristics, and patient-perceived quality of care. Design. Cross-sectional study using survey data from a panel of chronically ill patients and medical registration data provided by their general practices. Setting and subjects. A sample of 1377 patients with somatic chronic disease(s) randomly selected in general practices throughout the Netherlands, supplemented with a sample of 225 COPD patients, also recruited from general practices. Main outcome measures. (i) Percentage of ICP use based on self-report by chronically ill patients, and (ii) patient-perceived quality of care as assessed using the Patient Assessment of Chronic Illness Care (PACIC). Results. ICP use among the total generic sample was low (9%), but slightly higher (13%) among patients diagnosed with diabetes or COPD, diseases for which disease management programmes have been set up in the Netherlands. Patients with a low educational level and patients with poor(er) self-rated health were more likely to have an ICP. Compared with patients without an ICP, patients with an ICP more often reported that the care they received was patient-centred, proactive, planned, and included collaborative goal setting, problem-solving, and follow-up support. Conclusion and implications. Findings reveal a discrepancy between practice and policy aspirations regarding ICP use in primary chronic illness care. More research is needed to gain insight into the effectiveness of ICPs to improve the quality of chronic illness care in various patient populations.     

A study of parental involvement in pediatric hospital care: implications for clinical practice

BACKGROUND: Although it has become common practice for parents to stay with their sick child in hospital, most hospitals lack routines and staff guidelines for involving parents in care processes and decisions. AIM: To gain a deeper understanding of factors that influence parental involvement and to clarify the parental role in the hospital care of chronically ill children. METHODS: Semistructured interviews with 14 parents of chronically ill children. RESULTS: Four themes were identified: support, professionalism, work environment, and responsibility. These themes describe the experience and perceptions of parents who regularly spend time in the hospital with their children. CONCLUSIONS: Clinical practices regarding parental involvement need to be established to optimize the hospital care of chronically ill children.     

Chronic sorrow in mothers of chronically ill and disabled children.

A qualitative study is presented following the hybrid model of concept development to examine the emotions present in mothers who care for their chronically ill children at home. In particular the study attempts to examine the presence or nonpresence of chronic sorrow in three mothers through the use of observation and intensive interview techniques and by following the Schatzman and Strauss (1973) method of field research. The population for this study varied in diagnosis, sex, age, prognosis, and family structure. The commonalities included an uncertain future, a significantly changed life-style as a result of the child's illness, and the presence of nursing care in the home. The emotion called chronic sorrow, introduced in 1962 by Olshansky, has had limited exposure in the literature. The concept was originally intended for examinations of parents of severely mentally retarded children. Recently it has been examined in varied populations. Although many different reactions have been presented in the literature regarding the emotions of parents of chronically ill children, chronic sorrow has not been one of them. The examination of this emotion has been disease specific. The presence of this emotion in this population has implications for nurses working in all care settings.     

Maternal Time and the Care of Disabled Children

Caring for disabled children has become increasingly the responsibility of parents, even when the medical care is complex. To assess the time commitment required, 133 mothers of disabled children were asked to estimate by specific task categories the extra time required to care for the children. Total average daily care time was reported at 12 hours and 6 minutes, with 6 hours and 30 minutes consumed in "vigilant" tasks (i.e., watching a child who cannot be left alone and/or providing emotional support). Multiple regression analysis showed an increase in total caregiving hours associated with a younger child who was more physically and mentally impaired, and who required more medical treatments. The amount of time required by parents to care for their chronically ill children of necessity results in lost opportunities. Because this burden is experienced primarily by women and because professional nurses could alleviate some of the burden, this issue deserves further study.     

健康教育在小儿哮喘护理中的临床应用效果

目的：评价健康教育在小儿哮喘护理中的临床应用效果。方法：取我院哮喘患儿90例展开调查,依据电脑随机分配法分组,对照组(常规护理)和观察组(健康教育)各45例,评价对比两组患儿干预效果。结果：干预前两组患儿的肺功能指标和各项生活质量对比差异无意义,干预后观察组患儿的各指标与对照组比较,统计差异有意义(P<0.05);观察组患儿干预后的各项遵医行为评分均显著比对照组高,统计结果P<0.05;相比于对照组,观察组患儿家长对健康知识的掌握度更高,结果P<0.05。结论：在小儿哮喘护理中实施个性化健康教育,不仅能规范患儿的治疗行为,还能提高其生活质量,改善肺功能,值得临床推广。