Taking the call-bell home: a qualitative evaluation of Tele-HomeCare for children

Tele-HomeCare (THC) delivers health care at home using telephone technologies. A THC service was developed as an adjunct to existing hospital and community care systems. It connected healthcare providers to children and families at home, during the initial transition from hospital to home, using video-conferencing phones and remote vital signs monitors. The goal was to support the transition from hospital to home, for children with subacute healthcare needs. This paper reports the qualitative evaluation of THC and describes the experiences of families supported by THC. A total of 16 mothers, four fathers and two adolescents from 16 families participated in a series of interviews conducted before, during and after THC. The interviews focused on the impact of THC on the children, on the families, and on their overall healthcare experience. Analysis of their accounts identified three subthemes: the stable child, a sense of security, and the healthcare-proficient parent. These subthemes were consistent across all time points and participants. Together they contributed to the overall effect of THC: the timely reunification of the family at home. THC was consistently reported to be an important resource that supported children and families during the transition from hospital to home. The benefits to children and families observed in this study may have also been a consequence of returning to their home environment, since THC allowed these children to be discharged home at a much earlier period. However, our findings are consistent with previous reports of the benefits of THC. Thus, THC is a successful method of healthcare service delivery that enables a safe return home with professional support provided remotely.     

Medical care experiences of children with autism and their parents: A scoping review

Children with autism spectrum disorder (ASD) and their families may benefit from the provision of additional supports in health care settings, particularly when preparing for and attending medical appointments. This review examined literature that describes experiences in medical care settings from the perspective of patients under age 18 with ASD and their caregivers. A scoping review was conducted to examine the experiences of children with ASD and their families in medical care settings. Twenty‐nine studies meeting inclusion criteria were identified and reviewed. The review indicated a number of challenges (e.g., parent‐reported problems in parent‐provider communication and overwhelming environments) as well as factors that facilitate positive experiences (e.g., providing positive reinforcement and explaining exam steps) during medical appointments. Children with ASD and their families are faced with many challenges while receiving care in medical settings. The present review identified many challenges families face, as well as facilitators of positive experiences. Understanding the unique experiences of patients with ASD and their parents will help to improve experiences in medical care settings for children, caregivers, and health care providers.     

Paediatric spinal fusion surgery and the transition to home‐based care: provider expectations and carer experiences

There are more than 12 million children with special healthcare needs (CSHCNs) in the United States, many of whom require specialised health‐care to treat chronic physical and developmental conditions. This study is a qualitative investigation of programme, surgical and at‐home recovery experiences among CSHCNs and their family carers who participated in a spine surgical care programme at a paediatric hospital in the Western United States. The programme is designed to manage increased surgical risk and the transition of care from hospital to home for children with severe scoliosis undergoing spinal fusion surgery. We conducted 30 semi‐structured in‐depth interviews with 14 surgical team members and 16 family carers of children who had programme evaluations and spinal surgeries in 2006. Data were collected in 2008 and 2009 in hospital or at home locations to gather programme participation feedback from families and inform the adequacy of programme support to families during at‐home recovery. Data were analysed by reflexive team and content analysis methodologies. Results showed the programme was effective at improving preoperative surgical evaluation and helping families to anticipate some aspects of the surgical experience and hospital discharge. However, the impact of spinal fusion surgery and the subsequent transition to home‐based care was profoundly emotional for patients and their carers. Our data indicate that programme providers underestimated the extent of emotional trauma experienced by patients and families, particularly during the at‐home recovery process. The data also suggest meaningful differences in providers' and carers' expectations for surgery. Carers' disappointment with their recovery experiences and the perceived lack of post‐discharge support impacted their interpretations of and perspectives on their surgical experience. Implications of this research for surgical care programmes include the need for assessment and provision of support for physical, social, and emotional burdens experienced by patients and carers at pre‐surgical, surgical and at‐home recovery phases.     

Advance directive communication: nurses' and social workers' perceptions of roles

As a facet of advance care planning for future health care, advance directive communication represents an important aspect of professional health care practice with older patients. Nurses and social workers routinely discuss advance directives in acute care settings; however, communication practices by discipline are not well understood. This qualitative study explored differences in advance directive communication practices by comparing and contrasting nurses' and social workers' perceptions of their roles. Focus group interviews were conducted with nurses (n = 6) and social workers (n = 5). Five key themes emerged from the data. Findings suggest that both professions perceive primary educational roles, though their informational practices differed in content. The professionals reported differential pathways that led to their practices with patients. Both disciplines identified advocacy roles with families and providers. The practitioners reported distinct roles with families. There was mutual recognition of interdisciplinary roles. The findings suggest that nurses and social workers engage in both parallel and complementary advance care planning practices with their patients.     

Understanding coordination of care from the consumer's perspective in a regional health system

OBJECTIVE: To understand and develop a model about the meaning of coordination to consumers who experienced a transition from acute care to home care. STUDY DESIGN: A qualitative, exploratory study using Grounded Theory. DATA SOURCES/ANALYSIS: Thirty-three consumers in the Calgary Regional Health Authority who had experienced the transition from an acute care hospital back into the community with home care support were interviewed. They were asked to describe their transition experience and what aspects of coordination were important to them. Interviews were recorded, transcribed, and analyzed using constant comparison. The coding and retrieval of information was facilitated by the computer software program Nud*ist. PRINCIPAL FINDINGS: The resulting model has four components: (1) the meaning of coordination to consumers; (2) aspects of health care system support that are important for coordination; (3) elements that prepared consumers to return home; and (4) the components of a successful transition experience. Consumers appeared to play a crucial role in spanning organizational boundaries by participating in the coordination of their own care. CONCLUSIONS: Consumers must be included in health care decisions as recipients of services and major players in the transition processes related to their care. Health care providers need to ensure that consumers are prepared to carry out their coordination role and managers need to foster a culture that values the consumer "voice" in organizational processes.     

Is There a Difference Between Center and Home Care Providers’ Training, Perceptions, and Practices Related to Obesity Prevention?

To compare the obesity related training, practices, and perceptions of home child care providers and center care providers. A self-administered survey was collected from child care providers who attended local child care training workshops in east central Illinois from March 2009 to August 2010. Study results were based on responses from 88 home care providers and 94 center providers. The survey questions addressed child care providers?? training in the prior year, their obesity prevention practices including written policies, their perceptions of influences on children??s health, and factors determining food menu selection. Paired t tests and Chi-square tests were used to compare the difference by child care type. 81.9% of home care providers and 58.6% of center care providers received nutrition training, while 66.7 and 43.0% of these providers received physical activity training, respectively. Nutrition content, guidelines or state regulations, and food availability were the most important factors that influenced both types of care providers?? food service menus. Both care provider types perceived they have less influence on children??s food preferences, eating habits, and weight status compared to the home environment. However, home care providers perceived a smaller discrepancy between the influences of child care and home environments compared to center care providers. Compared to center providers, home care providers were more likely to have had training, be involved with health promotion activities, and rate their influence higher on children??s health behaviors. Findings underscore the need for obesity prevention efforts in both types of child care settings.     

Discrepancy in the preferences of place of death between terminally ill cancer patients and their primary family caregivers in Taiwan

There is a worldwide common preference for dying at home. However, death at home does not come without significant challenges and potential consequences for families. Given the interactive nature of decisions regarding the place of death, the family's perspective is important and needs to be investigated. The purposes of this study were to compare (1) Taiwanese terminally ill cancer patients' and their family caregivers' preferences for the patient's place of death; and (2) important factors that are considered in choosing the preferred place of death from both points of view. A total of 617 dyads of terminally ill cancer patients and their family caregivers were surveyed. The majority of both terminally ill cancer patients and their family caregivers preferred to die at home (61.0% and 56.9%, respectively). A higher proportion of the family caregivers indicated a preference for hospital death for the patients. There was a moderate association between the two respondents in the preferences of place of death. Results underscore discrepancies between patients and their families in the importance given to cultural concerns, quality of health care, worries of being a burden to others, lack of availability of families, relationships with health care providers, and being surrounded by the home environment. Effective interventions need to be developed which can lighten the caregiving burden and help families retain dying patients at home, avoid unnecessary re-hospitalizations and unfavorable hospital deaths, and improve accordance with the patient's wishes.     

Across the health-social care divide: elderly people as active users of health care and social care

Several ways in which elderly people may assume an active role when using welfare services are discussed here. Selected findings are presented from a study that explored the experience and behaviour of elderly people on discharge from inpatient care with regard to criteria indicating user influence or control (namely participation, representation, access, choice, information and redress). Data were collected via semistructured interviews with service users (n = 30) soon after their return home from hospital. A number of differences were revealed between health care and social care in relation to users being provided with opportunities to assume an active role and in being willing and able to assume an active role. These differences were manifest in elderly service users accessing services, seeking information, exercising choice and acting independently of service providers. It appeared paradoxical that contact points were more easily defined with regard to health care yet users were more likely to exercise choice and act independently in securing social care. It is suggested that social care needs and appropriate service delivery are more easily recognised than making the link between perceived health care needs and appropriate services. In addition, it appeared that informal and private providers are more widely available and accessible for social care. If comprehensive continuing care is to be provided, incorporating both health and social care elements, greater uniformity appears to be required across the welfare sector. Lessons for social care provision from the delivery of health care suggest the clear definition of contact points to facilitate service use. Making health care more accessible, however, does not appear to be easily attainable due to the monopoly provision of health care and the lack of direct purchasing power by potential users.     

Carrying: parental experience of the hospital transfer of their baby

Some hospital practices that are routine for hospital staff may carry unintended significance for patients and their families. The transfer of neonatal infants between hospitals and hospital environments is one such practice that may be covered by perfectly acceptable rules and regulations but that, at times, gives rise to unsuspected anxieties, pain, and worries in the parent. In this phenomenological study, I explored meaning aspects of the phenomenon transfer to reveal a lived experience of carrying--a carrying across from here to there; a carrying between changing places; a carrying contact of parent-child in-touchness that is enabled or compromised in this experience; a carrying with care; and a carrying as a search for place as home. The concluding recommendations speak to the need for understanding the experiences of hospitalized babies' parents, and speak to the tactful sensitivities required of the health care team during the transfer of child and family.     

Preventing Obesity and Eating Disorders in Adolescents: What Can Health Care Providers Do?

This article describes five research-based recommendations for health care providers to help prevent both obesity and eating disorders among adolescents that they see within clinical, school, or other settings. The recommendations are based primarily upon findings from Project EAT, a large, population-based study of eating and weight-related issues in adolescents. Recommendations include the following: 1) discourage unhealthy dieting; instead encourage and support the use of eating and physical activity behaviors that can be maintained on an ongoing basis; 2) promote a positive body image; 3) encourage more frequent, and more enjoyable, family meals; 4) Encourage families to talk less about weight and do more at home to facilitate healthy eating and physical activity; and 5) assume that overweight teens have experienced weight mistreatment and address this issue with teens and their families. These recommendations stress the importance of helping adolescents and their families focus less on weight and more on sustained behavioral change.     

Health Training and Information Needs of Child Day Care Providers

This study sought to determine day care providers (day care center directors and family day care home providers) knowledge of the health status of children in their care, the availability of first and and emergency procedures, the management of acute conditions and illness, and provider interest in training and information on child health Although both types of providers need additional training, the needs of family day care home providers seem greater There was limited interest in topics that have become increasingly important, e g, care of children with disabilities or with chronic conditions To meet these health training and informational needs of day care providers, community-based health professionals and health agencies should become more involved as advocates, consultants, and resources for health promotion and disease prevention practices in day care settings.     

Understanding the role of health care providers during the transition of adolescents with disabilities and special health care needs.

PURPOSE: To evaluate the role of health care providers in the transition from pediatric to adult health care for adolescents with disabilities and special health care needs (SHCN) from both the families' and providers' perspectives. METHODS: A total of 753 parents of adolescents with SHCN (e.g. developmental, physical, behavioral/emotional, learning, or health-related disabilities) were surveyed by questionnaire to assess their perceptions of their health care provider's level of involvement in various transition activities and the extent to which they felt it was the provider's responsibility to assist in a particular activity. One hundred forty-one health care providers (primarily pediatricians) completed a parallel survey to assess their level of participation in the same transition activities and the extent to which they felt it was their responsibility to assist with each transition activity. The questionnaire listed 13 different transition activities health providers may engage in to help young people prepare for adulthood and also asked questions about areas such as employment and health insurance. To investigate whether parents and providers share the same views regarding the involvement and responsibility of providers across the 13 transition activities, two sets of Student's t-tests were calculated. RESULTS: There were significant differences between providers and parents concerning both the level of provider involvement and the extent to which it was the provider's responsibility to assist in various transition activities (e.g., health providers reported significantly more involvement than did parents for 11 of the 13 transition activities and, compared with parents, providers reported that it was more within their role to assist in these 11 transition activities). CONCLUSIONS: The findings suggest a need for health care providers and parents to have open discussions about the nature and extent to which providers assist families in key transition activities.     

Mindfulness-based interventions with social workers and the potential for enhanced patient-centered care: A systematic review of the literature

The use of mindfulness-based interventions (MBIs) is well documented in the mental health, medical, and education literature. There is minimal research on the use of mindfulness with social workers. As demonstrated in other professional and helping fields, mindfulness may enhance clinical skills, reduce burnout, and increase job satisfaction among social workers. In the health care field mindfulness appears integral to patient and family relationships and personal resilience. The evolving and expanding role of hospital social workers may lead to increased work stress and greater demands from both the medical system and patients and families. Research with medical providers, such as physicians and nurses, suggests mindfulness may help in reducing stress, enhancing relationships, and fostering the self-reflection required to provide patient-centered care. We systematically reviewed the existing literature to begin understanding both mindfulness qualities and practices and the effectiveness of MBIs among social workers as well as the relationship of mindfulness to patient-centered care.     

Delivery and postpartum practices among new mothers in Laputta,Myanmar: intersecting traditional and modern practices and beliefs

Myanmar is witnessing increased access to modern maternity care, along with shifting norms and practices. Past research has documented low rates of facility-based deliveries in the country, along with adverse maternal and child health outcomes. Research has also documented diverse traditional practices in the postpartum period, related to maternity care and maternal food intake. Through 34 qualitative interviews with women who recently gave birth and their mothers-in-law in one township in Myanmar (Laputta), we explore factors influencing decision-making around postpartum care and the practices that women engage in. We find that women use both modern and traditional providers because different types of providers play particular roles in the delivery and postpartum period. Despite knowledge of about healthy foods to eat postpartum, many women restrict the intake of certain foods, and mothers-in-laws’ beliefs in these practices are particularly strong. Findings suggest that women and their families are balancing two different sets of practices and beliefs, which at times come in conflict. Educational campaigns and programmes should address both modern and traditional beliefs and practices to help women be better able to access safe care and improve their own and their children’s health.     

Guidelines for planning home enteral feedings

Tube feeding at home is a viable option for maintaining optimum nutriture when oral intake is inadequate or impossible. Qualifying patients and their caretakers can be instructed in formula preparation, feeding administration, and related care techniques. Extra hospital support systems, including insurance agencies, home medical suppliers, and public health nurses, are available to facilitate the transition from hospital to home care. For patients who require enteral nutrition but not acute or extended medical care, home tube feeding can promote a less disrupted family unit, improved quality of life, and diminished health care costs.     

AIDS stigma in health services in the Eastern Caribbean

Stigma obstructs HIV/AIDS prevention and care worldwide, including in the Caribbean, where the prevalence of AIDS is second only to sub-Saharan Africa. To contextualise the experience of AIDS stigma in health services in Grenada and Trinidad and Tobago, we conducted eight focus groups with 51 people living with HIV/AIDS (PLHA), families, and service providers. Quasi-deductive content analysis revealed consonance with Western and Northern conceptualisations of AIDS stigma wherein stigma is enacted upon marginalised populations and reinforced through psycho-sociological processes comparing 'in' and 'out' groups. Socially constructed to be physically contagious and socially deviant, PLHA are scorned by some service providers, especially when they are perceived to be gay or bisexual. PLHA and providers identified passive neglect and active refusal by hospital and clinic staff to provide care to PLHA. Institutional practices for safeguarding patient confidentiality are perceived as marginally enforced. Interventions are needed to reduce provider stigma so the public will access HIV testing and PLHA will seek treatment.     

Posthospital needs of elderly people at home: findings from an eight-month follow-up study.

In a study of 737 elderly hospital patients discharged to their homes in suburban areas northwest of Chicago, Illinois, 60 percent were assessed as needing help with personal care or housekeeping. Only 19 percent were referred by the hospital to community service agencies and, in the immediate postdischarge period, a large proportion of help in both personal care and housekeeping was given by relatives. Eight months after discharge, however, the proportion of care provided by relatives had decreased and the proportion of paid help had increased. The use of help at both points in time was strongly related to limitations in the basic activities of daily living (ADL) at time of hospital discharge. Many patients were unaware of available community services, and 64 percent said that no one in the hospital had talked with them about managing at home. These findings indicate the need for rethinking criteria for hospital discharge planning, more effective communication between service providers and patients, and community focus of attention on elders coming home from the hospital.