It is estimated that one out of every five household with children in the United States includes a Child with Special Health Care Needs (CSHCN). Families of CSHCN face many challenges including financial burdens beyond that of other families and difficulty accessing much needed pediatric specialty care. Telemedicine provides a potential solution or, at the least, an alternative to the traditional system of care, for health care providers and communities to address access and financial concerns of families of CSHCN. A quasi-experimental research design was used in this study to examine the differences in cost, caring, and family-centered care in relation to pediatric specialty services utilizing telemedicine technology compared to traditional face-to-face care. The study sample included a convenience sample of 222 parents/ guardians of CSHCN residing in rural, remote and medically underserved areas of Southeast Florida enrolled in the Children's Medical Services (CMS) program. The sample was comprised of two study groups: traditional (n = 110) which included families receiving traditional face-to-face pediatric specialty care; and the telemedicine group (n = 112) which included families who have received telemedicine visits along with traditional face-to-face pediatric specialty care. Measures of cost, caring, and family-centered care were obtained using three instruments including a Family Cost Survey, Caring Professional Scale (CPS), and Measure of Processes of Care- 20 Item Scale (MPOC-20). Results indicated that there were no significant differences in family costs when telemedicine was available locally compared to traditional face-to-face care in the local community. Family costs were anticipated to be significantly higher if telemedicine was not available in their communities. There were no differences in the families' perceptions of care as caring for the telemedicine and traditional groups. Results indicated significant differences between the groups in regards to family-centered care, with telemedicine group parents/ guardians reporting more positive perceptions of the system of care as family-centered compared to families receiving traditional face-to-face pediatric specialty care. These results together underscore the importance of assuring and facilitating access to pediatric specialty care for CSHCN and their families by further reducing their burdens and costs. The use of innovative systems of care such as telemedicine has promise to promote caring, family-centered systems of care in their home communities. Future research is recommended to further examine nursing roles and interventions in telemedicine programs, measurement tools, and family perceptions of systems of care across different populations.

Children with complex health problems who are dependent upon medical technology require frequent hospitalizations, during which parents must make difficult decisions regarding their child’s care. Although principles of “family-centred care” have been widely adopted by paediatric hospitals, studies indicate that many parents are dissatisfied with their roles in decisions about their child’s care. Pierre Bourdieu’s Logic of Practice, specifically his concepts of field, capital, and habitus, as they relate to cultural and symbolic capital within the field of pediatric medicine, were used to guide the design of a parent briefing intervention aimed at improving parents’ satisfaction with decision making. Briefings were conducted during daily hospital rounds. Physicians and nurses were asked to sit while using a checklist as a communication guide. A two-part study was conducted to determine feasibility of a randomized controlled trial of a parent briefing. One component was a psychometric evaluation of an instrument to measure parents’ satisfaction with decision making. The other was a phase I single group, post-test study of the parent briefing. Eighty-two parents of children admitted to an in-patient unit in a large metropolitan pediatric health centre, with an expected length of stay ≥ 3 days, completed the Family Satisfaction with Decision Making (FS/DM) subscale and the Decisional Conflict Scale (DCS) prior to discharge. A subgroup of parents participated in the parent briefing study. The Cronbach’s alpha reliability coefficient of the FS/DM was 0.87, and it was inversely correlated with the DCS (r2= -0.635, p<0.0001). Eighteen physicians, 25 nurses, and 31 parents participated in the phase I trial of the briefing intervention. Sixty-eight out of an expected 93 briefings were carried out as per study protocol. Nineteen parents did not receive the required “dose” of the study intervention. Mean time to complete the intervention was 11.9 minutes (SD = 6.9). Parents and nurses rated the acceptability and usefulness of the intervention favourably, whereas physicians’ ratings were mixed. The FS/DM instrument is a suitable primary outcome measure for an RCT. However, more work needs to be done, to ensure the feasibility of the intervention, including more intensive clinician training.

Children with complex health problems who are dependent upon medical technology require frequent hospitalizations, during which parents must make difficult decisions regarding their child’s care. Although principles of “family-centred care” have been widely adopted by paediatric hospitals, studies indicate that many parents are dissatisfied with their roles in decisions about their child’s care. Pierre Bourdieu’s Logic of Practice, specifically his concepts of field, capital, and habitus, as they relate to cultural and symbolic capital within the field of pediatric medicine, were used to guide the design of a parent briefing intervention aimed at improving parents’ satisfaction with decision making. Briefings were conducted during daily hospital rounds. Physicians and nurses were asked to sit while using a checklist as a communication guide. A two-part study was conducted to determine feasibility of a randomized controlled trial of a parent briefing. One component was a psychometric evaluation of an instrument to measure parents’ satisfaction with decision making. The other was a phase I single group, post-test study of the parent briefing. Eighty-two parents of children admitted to an in-patient unit in a large metropolitan pediatric health centre, with an expected length of stay ≥ 3 days, completed the Family Satisfaction with Decision Making (FS/DM) subscale and the Decisional Conflict Scale (DCS) prior to discharge. A subgroup of parents participated in the parent briefing study. The Cronbach’s alpha reliability coefficient of the FS/DM was 0.87, and it was inversely correlated with the DCS (r2= -0.635, p<0.0001). Eighteen physicians, 25 nurses, and 31 parents participated in the phase I trial of the briefing intervention. Sixty-eight out of an expected 93 briefings were carried out as per study protocol. Nineteen parents did not receive the required “dose” of the study intervention. Mean time to complete the intervention was 11.9 minutes (SD = 6.9). Parents and nurses rated the acceptability and usefulness of the intervention favourably, whereas physicians’ ratings were mixed. The FS/DM instrument is a suitable primary outcome measure for an RCT. However, more work needs to be done, to ensure the feasibility of the intervention, including more intensive clinician training.

Diss. (sammanfattning) Linköping : Univ., 2004. / Härtill 4 uppsatser.

In the theoretical part the terms hospice, home hospice care and palliative care are defined. History, principles, objectives and the concept of hospice care in the Czech Republic are mentioned. The phases of psychological responses to a serious illness undergone by a patient and the patients´ reaction to impending death are described. The traditional model of dying in the Czech Republic in the home environment, the gradual institutionalization and the taboos surrounding death, and the new inception of humane methods in the care for the dying after the year 1989 are particularized. The current types of hospice care in the Czech Republic and especially home hospice care are described in detail, and also the needs of the dying and those of their loved ones, which is the main topic of my thesis. The aim of this work is to survey the availability of palliative home care services in the Vysočina region, to compare the range of offered services, to map the users´ experience and to identify the risk factors in providing this care. In the realized qualitative research the availability of these services was surveyed through the content analysis of data by the technique of official documents and virtual data analysis. In order to map the users´ experience, managers of two agencies providing home hospice care in the town of Třebíč were addressed, as well as the users or their families to whom these agencies provide their services. The interview method, the technique of a semi-structured interview was used. There are eight providers of home hospice care in the Vysočina region. The Vysočina region supports not only home hospice care, but also supported the establishment of residential hospice services in the Long-Term Care Hospitals in three towns in the Vysočina region and the Palliative Care Department in the Jihlava hospital. These facilities have partially substituted a non-existent hospice in the Vysočina region. Hospice care in the Vysočina region is relatively new. It is necessary to get some experience and discover possible shortcomings. The complexity of the care for the seriously ill can be extended, which may enable the seriously ill patients to stay at home with their relatives as long as possible. Although home hospice care has its limits in terms of pain alleviation and complications resulting from a disease, the users´ experience is satisfactory and meets their expectations. The contribution of the thesis lies in uncovering deficiencies in home hospice care and the provision of identified information to the care providers and other health care workers, thus enhancing the awareness of this care among health professionals and family members of seriously ill patients.

Technological advances during the past 30 years have dramatically improved survival rates for children with life-threatening conditions (preterm births, congenital anomalies, disease, or injury) resulting in children with special health care needs (CSHCN), children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally. There are approximately 10.2 million of these children in the United States or one in five households with a child with special health care needs. Care for these children is limited to home care, medical day care (Prescribed Pediatric Extended Care; P-PEC) or a long term care (LTC) facility. There is very limited research examining health outcomes of CSHCN and their families. The purpose of this research was to compare the effects of home care settings, P-PEC settings, and LTC settings on child health and functioning, family health and function, and health care service use of families with CSHCN. Eighty four CSHCN ages 2 to 21 years having a medically fragile or complex medical condition that required continual monitoring were enrolled with their parents/guardians. Interviews were conducted monthly for five months using the PedsQL TM Generic Core Module for child health and functioning, PedsQL TM Family Impact Module for family health and functioning, and Access to Care from the NS-CSHCN survey for health care services. Descriptive statistics, chi square, and ANCOVA were conducted to determine differences across care settings. Children in the P-PEC settings had a highest health care quality of life (HRQL) overall including physical and psychosocial functioning. Parents/guardians with CSHCN in LTC had the highest HRQL including having time and energy for a social life and employment. Parents/guardians with CSHCN in home care settings had the poorest HRQL including physical and psychosocial functioning with cognitive difficulties, difficulties with worry, communication, and daily activities. They had the fewest hours of employment and the most hours providing direct care for their children. Overall health care service use was the same across the care settings.

Background: Previous studies have shown that an integrated care approaches for older people with complex care needs comes with less hospitalization and the reduced cost for the community (Eklund &amp; Wilhelmssons, 2009). Since the new reform about coordinated care (2017:612) took place higher demand was put on the professionals in the health care system to collaborate. The reform indicates that a coordinated care plan should be establish to people with complex care needs when they go from in- to outpatient care (SKR, 2018) Aim: To describe health professionals in municipality, institutional care and primary experience of coordinated care plans to older people with complex care needs and describe their opinion of which elements that facilitated and embarrass the process.Method: The study was conducted whit a qualitative study design in form of interviews. Nine respondents were included in the study. A content analysis with a deductive approach was used (Elo &amp; Kyngäs’s. 2018). Widmarks et al; s (2011) model was used as a theoretical framework.Result: The key factors: allocation of responsibilities, confidence and the professional encounter was found in the analyses. And there were areas in al of them were barriers to collaboration occurred and made collaboration difficult. Conclusion: The result indicates that there is a lack of clarity due to the guidelines of the collaboration process. These guidelines must be improved to facilitate collaboration for older people with complex care needs.

This research explores final year dental students’ knowledge and attitudes towards the treatment and management of patients with Intellectual and Developmental Disabilities (I/DD) as related to variations in the dental practices in Special Health Care Needs (SHCN) training they received. A quantitative, non-experimental study was conducted, employing survey data collection methods, to address descriptive, comparative, and correlational questions. One cohort, Class 2020, attended extramural rotations in specialized clinics for patients with I/DD and in-person lecture concerning this topic. However, due to the COVID-19 pandemic and its health-related restrictions, another cohort, Class 2021, did not have the same opportunity as rotations were cancelled and the lecture was prerecorded and viewed online. Responses from a 35-item survey, distributed through an online platform, were obtained from both cohorts (n= 14 for Class 2020; n= 19 for Class 2021), addressing descriptive, comparative, and correlational research questions. Results revealed higher levels of knowledge and more positive perceptions of the program from Class 2020, the group that received clinical guidance, than Class of 2021. Analysis revealed positive relationships between students’ confidence levels and whether they had examined, assisted, or treated patients with I/DD. Associations were also found between students’ confidence and willingness to treat patients with I/DD. Although only correlational, this study’s findings suggest ways to foster students’ confidence and induce positive attitudes in dental school graduates that are likely to improve equitable access to healthcare for those with I/DD.

No description available.

No description available.