Establishment of a family-centred care programme with follow-up home visits: implications for clinical care and economic characteristics.

BACKGROUND: Elternberatung Frühstart is a family-centred care programme for very preterm infants and seriously ill neonates and their parents. The uniqueness of this programme is in its consistency and continuity in parental counselling from pregnancy at risk to follow-up home visits. PATIENTS AND METHODS: Family-centred care is provided by specialised nurses, a social education worker, a case manager, a psychologist and neonatologists. They give support and information to parents and facilitate transition to home including co-ordination of health care services and support networks. The programme starts with information for parents at risk of preterm delivery to lessen their anxieties and worries. After birth, parental bonding is encouraged and parents are involved in daily care procedures. The following weeks focus on communication, information and education in order to enhance parental competence. Discharge planning and coordinated follow-up visits involve the family doctor and several members of the welfare and health care system. One of the key objectives is to prevent re-hospitalisation. Over a 4 year period 330 families participated. Funding is provided by: 1) the hospital, from admission to discharge equivalent to one full-time nursing staff, 2) charity donations for follow-up visits and 3) health care insurance for social medical aftercare (Bunter Kreis) following §43, 2 SGB V in severe cases. RESULTS: As a result of this programme, the median length of stay was reduced by 24 days; the number of patients that stayed longer than average were reduced by 64% in the group of patients born < 1 500 g. At the same time the patient throughput increased from 243 to 413. CONCLUSION: To conclude, a family-centred care programme with coordinated follow-up increases parental satisfaction, reduces the length of the hospital stay and is therefore profitable.

Behavior change following implementation of home-based life-saving skills in Liberia, West Africa.

INTRODUCTION: Home-Based Life-Saving Skills (HBLSS) has been fully integrated into Liberia's long-term plan to decrease maternal and newborn mortality and morbidity, coordinated through the Ministry of Health and Social Welfare. The objective of this article is to disseminate evaluation data from project monitoring and documentation on translation of knowledge and skills obtained through HBLSS into behavior change at the community level. METHODS: One year after completion of HBLSS training, complication audits were conducted with 434 postpartum women in 1 rural county in Liberia. RESULTS: Sixty-two percent (n = 269) of the women were attended during birth by an HBLSS-trained traditional midwife or family member, while 38% (n = 165) were attended by a traditional midwife or family member who did not receive HBLSS training. Home-Based Life-Saving Skills-trained birth attendants performed significantly more first actions (life-saving actions taught to be performed after every birth) than the attendants not HBLSS trained. Fourteen percent of our sample (n = 62) reported too much bleeding following the birth. Of these women, approximately half (n = 29) were attended by an HBLSS-trained traditional midwife or family member. There was a significant difference in secondary actions (those actions taught to be performed when a woman experiences too much bleeding following childbirth) that were reported to have been performed by HBLSS-trained attendants (mean 5.26, standard deviation [SD] 1.88) and untrained attendants (mean 2.73, SD 1.97; P < .0001). DISCUSSION: Our findings suggest that HBLSS knowledge is being transferred into behavior change and used at the community level by traditional midwives and family members.

Home-based lymphedema treatment in patients with cancer-related lymphedema or noncancer-related lymphedema.

PURPOSE/OBJECTIVES: To compare treatment protocol adherence, satisfaction, and perceived changes in emotional and functional status between patients with lymphedema with and without cancer using the home-based Flexitouch (Tactile Systems Technology, Inc.) system for lymphedema self-care. DESIGN: Quasi-experimental, pre- and post-test design. SETTING: Private homes in the continental United States and Alaska. SAMPLE: 155 community-dwelling individuals with lymphedema: 93 with cancer-related lymphedema and 62 with noncancer-related lymphedema. METHODS: A survey was completed before use of the Flexitouch system. Participants received in-home education about device use, safety precautions, and the two-phase therapy protocol. A post-therapy survey was completed during the maintenance phase of the protocol. MAIN RESEARCH VARIABLES: Use of the Flexitouch system, treatment protocol adherence, participant satisfaction, and emotional and functional status. FINDINGS: Participants without cancer were more adherent to the prescribed protocol. Both groups were satisfied with the system, perceived it to be effective, and reported improvement in physical and emotional status. Participants' use of professional manual lymphatic drainage (MLD) therapy, self-MLD, and bandaging declined after they initiated use of the Flexitouch system. CONCLUSIONS: Patients using the Flexitouch system were satisfied with the device and perceived it to be beneficial in management of their lymphedema. IMPLICATIONS FOR NURSING: Patients using the Flexitouch system should be assessed for adherence to the prescribed treatment protocol and use of other self-care treatments. Healthcare professionals should facilitate communication among members of the lymphedema treatment team and the patient when problems are noted.

Predictors of adherence to a skill-building intervention in dementia caregivers.

BACKGROUND: Treatment adherence is a widely recognized problem in health services but understudied in caregiver intervention research. This study examines caregiver sociodemographic and psychological characteristics, patient illness severity, and treatment implementation factors as predictors of caregiver adherence to a skills training intervention to help families manage dementia care problems at home. METHODS: The sample consisted of 105 caregivers randomized to the Home Environmental Skill-Building Program at the Philadelphia site of the National Institutes of Health (NIH) Resources for Enhancing Alzheimer's Caregiver Health (REACH I). The intervention, implemented by occupational therapists, consisted of education, problem solving, communication, environmental and task simplification techniques, and home modifications. Adherence was measured by a proportion score representing the percentage of strategies used by participants compared to the total number of strategies prescribed during intervention (Strategy Use). RESULTS: Regression analysis with intraclass correlation adjustment for interventionist effects revealed that caregivers with better physical health (p <.001), greater treatment exposure (p <.001), more problem areas addressed (p =.012), and for whom more active therapeutic techniques (role play) were used (p =.004) demonstrated greater adherence. Other caregiver characteristics, patient cognitive impairment, and troublesome behaviors were not significantly related to caregiver adherence. CONCLUSIONS: Modifiable caregiver and treatment implementation factors, including active engagement of caregivers, were associated with adherence, whereas patient characteristics were not. Caregivers with poor health may be at risk for not benefiting from intervention, suggesting that efforts, including instruction in preventive care and allocating time to attend to their own health care needs, be directed towards improving their health.

A training and support programme for caregivers of children with disabilities: an exploratory study.

Our aim was to conduct an exploratory evaluation of an intervention designed to equip caregivers with simple massage skills that they could use with their children in the home. The sample comprised 82 parents and 82 children with disabilities. Data were collected by self-administered questionnaires at two points in time: baseline, and immediately post-programme (after 8 weeks). Qualitative data were collected through Home Record Sheets and Monitoring Forms completed by caregivers and therapists, respectively. Results revealed statistically significant improvements in caregivers' self-efficacy in their ability to conduct massage, in managing children's psychosocial wellbeing and in levels of anxious mood. Caregiver reports of children's sleeping patterns and eating showed significant improvements. Qualitative data confirmed that caregivers believed that children's sleep patterns improved and also suggested improvements in children's bowel movements, awareness of their bodies, movement, and communication; factors that could be included in future evaluation.

[Short bowel syndrome in children--treatment with home parenteral nutrition]. / Síndrome do intestino curto na criança--tratamento com nutrição parenteral domiciliar.

BACKGROUND: In 1979 the author first utilized the method of home parenteral nutrition in a child in Brazil. The purpose of this paper is to present the experience, during the last 23 years, of treatment of children with short bowel utilizing home parenteral nutrition. METHODS: Nineteen children with short bowel syndrome (resection of more than 75% of total intestinal length) were initially treated in the hospital and then nutrition therapy was continued at home. Total duration of nutrition therapy ranged from 4 months to 4 years and a half, while periods of home nutrition therapy ranged from 1 week to 4 years (median 8 months). Complete nutrition mixtures containing amino acids, glucose, lipid emulsion, electrolytes, vitamins and micro-elements were administered through Broviac or Hickman central venous catheters. Solutions were infused during the day or the night according to preference of the parents. RESULTS: In all cases weight gain, growth and development similar to normal children under oral nutrition were verified. Catheter occlusion, liver dysfunction and sepsis related to the catheter were the most frequent complications. Seven children (37%) are alive and treatment free. Twelve children died (ten of them with resection of the entire small bowel and cecum), 11 due to parenteral nutrition complications (nine due to catheter sepsis and two due to massive pulmonary embolization) and one child died with neurological complications after a combined liver and small bowel transplantation. CONCLUSION: Home parenteral nutrition is sometimes the only therapeutic choice for children with short bowel syndrome and promotes a maximal level of comfort to the patient and to the parents. Furthermore it reduces the period of hospitalization, while adaptation of the remaining small bowel occurs with maintenance of the nutritional status by oral route.

Síndrome do intestino curto na criança: tratamento com nutrição parenteral domiciliar / Short bowel syndrome in children: treatment with home parenteral nutrition

OBJETIVO: Em 1979 o autor utilizou, pela primeira vez no Brasil, a nutrição parenteral prolongada domiciliar em criança. O objetivo deste trabalho é o de apresentar a experiência da utilização deste método no tratamento de crianças com síndrome do intestino curto nos últimos 23 anos. MÉTODOS: Dezenove crianças com esta afecção (ressecção de mais de 75 por cento do comprimento intestinal) foram tratadas inicialmente em hospital e a seguir no próprio domicílio. Os períodos totais de terapia nutricional variaram de quatro meses a quatro anos e meio, enquanto que as crianças permaneceram em nutrição parenteral domiciliar por períodos que variaram de uma semana a quatro anos, com mediana de oito meses. As soluções nutrientes completas, contendo aminoácidos, glicose, emulsão lipídica, eletrólitos, vitaminas e micro-elementos foram administradas através de catéteres venosos centrais do tipo Broviac ou Hickman. No domicílio, as soluções foram administradas durante o período diurno ou noturno, segundo a preferência dos familiares. RESULTADOS: Em todos os casos verificou-se ganho ponderal, crescimento e desenvolvimento satisfatórios, semelhantes aos obtidos durante nutrição oral. Obstruções do cateter, alterações hepáticas e infecção devida ao cateter foram as complicações mais freqüentes. Sete crianças (37 por cento) sobreviveram e estão fora de tratamento. Doze crianças faleceram (dez com resecção total do intestino delgado), sendo 11 por complicações relacionadas à nutrição parenteral (nove por infecção sistêmica e dois por embolia pulmonar maciça) e uma por complicação neurológica, dois meses após transplante duplo de intestino e fígado. CONCLUSAO: A nutrição parenteral domiciliar em crianças com síndrome do intestino curto traz indiscutíveis benefícios, permite redução do período de internação hospitalar, tornando possível a adaptação funcional do intestino remanescente e manutenção do estado nutricional com a via oral exclusiva.

Cultural health practices of South African Vatsonga people on the home care of children with measles.

The purpose of this research study was to identify the cultural health practices of the Vatsonga in relation to the home care of children with measles. It was undertaken in the Giyani District of the Limpopo Province, in the Republic of South Africa. The qualitative, explorative and contextual design was used to conduct this project. Data was collected from nine key informants and nineteen general informants. Data was collected using individual interviews with key-informants and focus group interviews with general informants. Observations were also made. The findings revealed that the Vatsonga still provide home care for children with measles. Those who care for the sick children are women--either the mother of the sick child or an elderly woman with knowledge of the disease. There are different cultural practices that the Vatsonga observe when there is a child suffering from measles. These include isolation of the child, restriction of sexual intercourse, giving of a milk diet to the sick child and performance of a cultural ceremony at the resolution of the disease. Similarities and differences between hospital and home-based care were identified. Recommendations were made using Leininger's three modes of decision making as explained in the Sunrise Model, which include the following: cultural care preservation of maintenance; cultural care accommodation or negotiation; cultural care repatterning or restructuring.

Voicing the strengths of Pacific Island parent caregivers of children who are medically fragile.

Research is deficient regarding the strengths of Pacific Island parents of children who are medically fragile. The purpose of this qualitative ethnographic study was to explore the strengths of Pacific Island parents of these children. Audiotaped interviews were analyzed using Text Smart and peer review. The core theme reflecting strength was positive energy. Participants believed that parents needed to have the ability to handle emotional feelings, solve problems, connect with their spirituality, find meaning, take care of themselves, use family support, use community support, use a positive attitude, be resourceful, meet a challenge, interact with nature, and focus on the present. Themes were affirmed by the literature with the exception of interacting with nature, which may be indigenous to the population's cultural orientation.

Knowledge and home management of malaria fever by mothers and care givers of under five children.

This study documents the knowledge and home management practices of 376 mothers and care givers of under five children on malaria fever. Results revealed that both the knowledge and case management practices were poor as only 179 (46.8%) knew how malaria was transmitted. Of those who knew malaria could be prevented, clearing of bushes and gutters was the commonly stated method (78 or 21.8%), followed by the use of traditional herbs. 'Agbo' by 75(20.9%) mothers. The elders and friends were stated to be the major source of knowledge about malaria by 141(37.5%) mothers. Knowledge scores was significantly higher in older mothers, among the educated, and skilled mothers (P<0.05). As regards practices, self-medication with modern drugs was common, these drugs had been given in the home by 265(70.5%) mothers while "Agbo", had been used by 95(25.5%) mothers before presenting at the clinic. Paracetamol was the modern drug often used (217 or 81.8%). Followed by chloroquine (57 or 21.5%). However, drug treatment practice were often incorrect. Chloroquine was prescribed correctly by 15(26.3%) mothers, while 109(50.2%) gave the correct dose of paracetamol. Only 16(4.3%) of the children received anti-malarial on the day the illness began. There is the need for education programmes on malaria for mothers, especially for young, illiterate and unskilled mothers, including the family elders.

Knowledge, attitudes, and practices of parents of asthmatic children in Cape Town.

To obtain information useful to asthma care in a relatively poor, high asthma prevalence population, a focus group study was undertaken with 72 parents of children with asthma or recurrent wheezing. There was a reasonable level of understanding of the causes of asthma, although variable acceptance of the diagnosis. Willingness to undertake home management of acute episodes and environmental control measures was high. Reported treatment was characterized by reliance on syrups, use of home remedies, resistance to inhaled therapy, and relatively low compliance with prescribed treatment. There was agreement on the poor level of service offered by doctors and public sector clinics. Asthma education in this population needs to build on what parents know and accept, but stress the relative safety of inhaled therapy, the need for maintenance therapy, and the value of pre-exercise prophylaxis, house dust mite control, and smoking cessation. There is an urgent need to improve the quality of asthma care provided by public sector clinics.

KAP study on mothers of children with Down syndrome.

We evaluated 50 mothers of children with Down syndrome attending Genetic Clinic of the Institute of Child Health and Hospital for Children, Madras, with special reference to their knowledge, belief and attitudes in the care of these children. After evaluation, they were educated individually and in groups with demonstration, picture cards and pamphlets, on the causation, expected health problems, developmental potential of Down syndrome and the ways and means to help the child to attain the maximum developmental potential. They were taught on preventive aspects of Down syndrome as well. Re-evaluation was done after three months, and considerable improvement was noted in the mother's knowledge, and attitude towards bringing up such a child. The mothers also showed an improvement in the skills in providing developmental enrichment to these children. Thus this study has formulated a programme in the management of such children, which can be practised on any population, anywhere, especially, in rural areas, and by less affluent folk, with poor educational background.

PIP: Between May-October 1989, physicians selected 50 mothers of low socioeconomic and educational background with Down Syndrome (DS) children who attended the Genetic Clinic at the Institute of Child Health and Hospital for Children in Madras, India for a study to evaluate their knowledge, attitude, and practices. The study consisted of a preevaluation, education and genetic counseling, and reevaluation at 3 months. Only 18% of the mothers knew that their children had DS. Physicians had diagnosed it at birth in these cases. Most mothers (62%) came to the hospital because they had noticed developmental delay. Most (64%) did not know what caused DS. 36% believed DS occurred due to various prenatal events including poor diet, weakness, injury, abortifacients, abdominal pain, vomiting, and long birth intervals. Family tended to blame the mothers for the child's disability which evoked social and emotional problems. When 52% learned of their children's handicap, they suffered depression. 80% did not know that their children required special care. Once learning this, however, most mothers (88%) wanted either themselves or someone else to care for their children. 96% breast fed their children and weaned them properly. 90% of the children had received immunizations. After genetic counseling and health education, all mothers understood their children's condition. 75% worked with their children at home doing passive exercises and developing their vocabulary. The rearing practices of the DS children were the same as those of the normal children. The mothers learned via the health education and genetic counseling that family planning and amniocentesis could prevent the birth of a DS child. The health education and genetic counseling program improved mothers knowledge, attitude, and practices toward child-rearing practices of DS children. This program can be duplicated among poor and illiterate parents in rural areas.

AIDS caregiving crisis: a proactive approach.

Within the next few years, it is very likely that AIDS will personally affect almost everyone in the United States in some manner. A relative, neighbor, friend, acquaintance, or coworker may develop AIDS. It is estimated that 1 to 1.5 million people in the United States are presently infected with the human immunodeficiency virus and may develop AIDS. AIDS is, indeed, a major public health problem. With the high cost of hospital care, home care is an effective health care alternative for people with AIDS. Obviously, people feel more comfortable in their own homes. Professional home care services are available for many people with AIDS but cannot always meet their needs 24 hours a day. The Home Nursing Course for Caregivers of Persons With AIDS is an example of an effective way to begin to deal with the present and future caregiving crisis. Nurses serve as both teachers and role models while presenting the course. This type of course presents a challenge for nurses to use their knowledge, experiences, and creativity to continue to address AIDS and other health care crises in similar ways.

Practical aspects of teaching home parenteral nutrition therapy.

With the implementation of the prospective pricing system there has been a greater emphasis on discharging patients on home health care therapy. Home parenteral nutrition (HPN) has been a successful method of treating patients with compromised gastrointestinal tracts. The key to the success of these programs remains patient and family training. Adequate knowledge and skills must be demonstrated and documented in the areas of aseptic technique, procedures of catheter care, complications, and equipment, prior to discharge. This paper describes the various aspects of identifying and training patients for HPN, and some of the problems and complications that may occur.

Training young parents to identify and report their children's illnesses.

We developed a comprehensive training program to teach young parents what symptoms to look for to judge the severity of their children's illnesses, what to do at home to comfort their children, and when to consult their children's physician or take them for emergency treatment. Three pairs of subjects received training that included written handouts, verbal instructions, modeling, positive practice, and verbal reinforcement. Skill acquisition was assessed by a behavioral test in which parents assessed, treated, or reported a simulated illness in a child. Written materials when used alone did not improve the parent's ability to identify and report children's illnesses. Modeling and role-playing followed by positive practice were successful in teaching these parents skills that were maintained for 3 months without additional training or instruction.

Care of the patient receiving antineoplastic drugs.

Caring for patients who receive chemotherapeutic agents is among the most challenging and potentially rewarding dimensions of oncologic nursing practice. The nurse must possess sound knowledge of not only the biologic and behavioral sciences, but also of current oncologic nursing practices, pathology, and the pharmaceutics of antineoplastic drugs. However, comprehensive nursing care must counterbalance clinical expertise with sensitivity to the unique problems patients with cancer and their families experience. Because the nurse is often the only health care professional with whom the patient and family have consistent contact, clinical expertise and sensitivity are of critical importance to the well-being of patients and their families during therapy. Through accurate, ongoing assessment and identification of problems, prompt recognition of learning needs, and intelligent, supportive, and creative interventions, nurses can do much to assure that patients and families receive the comprehensive care to which they are entitled. It is the purpose of this paper to discuss essential aspects of antineoplastic drug therapy and the important role of the nurse in caring for patients receiving this type of treatment.