Education needs in palliative care

A literature review confirms a need for improved medical educationon death, dying, terminal illness, and bereavement, and so palliativecare, from 1900 until the present time in the UK, Australia,New Zealand, USA, and Canada. The origins of the hospice movementand its influence are also discussed. Current palliative careteaching is recorded in a table of the courses initiated inmedical schools which demonstrates a lack of formal courses.An appreciation of the issues surrounding these topics is requiredfor the appropriate provision of palliative care, most importantlygood communication and symptom control. These together withthe issues of development of attitudes towards death, deliveringbad news of serious illness, recognition of palliative careas a philosophy, psychosocial aspects of care and counsellingthe bereaved are included in the recommendations for co-ordinatedinterdepartmental teaching. This acquisition of knowledge, developmentof attitudes, and improvement of skills in palliative care canbe achieved through the use of small group work and role-playexercises as well as formal lectures and experience at a hospice.Rectification of these curricula omissions will provide futuredoctors in a caring and competent manner with the ability topermit a dignified and ‘good’ death for the terminallyill.     

A systematic review of decision support needs of parents making child health decisions

Objective  To identify the decision support needs of parents attempting to make an informed health decision on behalf of a child.
Context  The first step towards implementing patient decision support is to assess patients' information and decision-making needs.
Search strategy  A systematic search of key bibliographic databases for decision support studies was performed in 2005. Reference lists of relevant review articles and key authors were searched. Three relevant journals were hand searched.
Inclusion criteria  Non-intervention studies containing data on decision support needs of parents making child health decisions.
Data extraction and synthesis  Data were extracted on study characteristics, decision focus and decision support needs. Studies were quality assessed using a pre-defined set of criteria. Data synthesis used the UK Evidence for Policy and Practice Information and Co-ordinating Centre approach.
Main results  One-hundred and forty nine studies were included across various child health decisions, settings and study designs. Thematic analysis of decision support needs indicated three key issues: (i) information (including suggestions about the content, delivery, source, timing); (ii) talking to others (including concerns about pressure from others); and (iii) feeling a sense of control over the process that could be influenced by emotionally charged decisions, the consultation process, and structural or service barriers. These were consistent across decision type, study design and whether or not the study focused on informed decision making.     

Assessing the symptoms,anxiety and practical needs of HIV/AIDS patients receiving palliative care

We report the work of two community teams who care for people with AIDS/HIV related illness, the characteristics of patients referred, and the impact of the teams on four aspects of quality of life. Data was collected on 140 patients (85 St. Mary's Home Support Team, 55 Bloomsbury Community Care Team) who were referred to and remained in the care of these teams until death. All patients were male, mean age 37.9 years, 116 were homosexual. Most referrals were from genito-urinary medicine clinics (48%) or AIDS wards (41%). There was a wide range of reasons for referral. At referral 62% were in hospital and 35% at home. Mean time in care was 31 weeks 5 days. Fifty-seven per cent died in hospital, 22% at home and 21% in a hospice. The Support Team Assessment Schedule (STAS), consisting of 17 items of care, was used by the teams to measure aspects of quality of life. Throughout care until death four STAS items: pain control, symptom control, patient anxiety and practical aid are reported in detail. Symptom control was a commonly severe problem at referral and although the teams had some success in improving this item it remained a serious problem throughout care. Patient anxiety, also a commonly severe problem at referral, improved significantly throughout care. Pain control was less commonly severe at referral and improved significantly throughout care. Practical aid, in contrast, was rarely a severe problem at any stage of care.     

Experiences and support needs of siblings of children with cancer

The diagnosis and treatment of childhood cancer places considerable demands on family life. Siblings have been shown to be at risk for development of emotional and behavioural problems. However, most studies have relied on parents' reports, and less is known about siblings' own views of their experiences. This paper presents findings from interviews with 94 siblings of children with cancer, at 6 and 18 months after diagnosis of the illness. Results show that, six months after diagnosis, siblings reported a number of problems: loss of attention and status; loss of their own and their families' usual activities and routines; loss of certainty and security; and loss of companionship of the ill child. For many, problems had resolved 18 months after diagnosis, but problems remained or had arisen for some. These were not confined to those whose brothers or sisters had relapsed or continued to have treatment. Supportive relationships were reported to be important resources, providing an opportunity for siblings to express their own feelings and needs, and information about the illness and treatment helped them to understand why family life was disrupted. Positive effects were also apparent: gains in maturity, understanding and compassion, and closer family relationships. The findings point to the need for support for siblings to provide information to help them make sense of the situation; opportunities to express their own feelings and reassurance to avoid fear and guilt; attention to feel valued and maintain self-esteem; and help to keep up their own interests and activities. Attention of parents and professionals in contact with the families was generally paid to the ill child. There is a need for health professionals, particularly those in the family's home community, to take a holistic approach to family support, to ensure that information and support is available to siblings.     

Nursing care needs of the caregiver of persons under palliative care

The purpose was to identify needs for nursing care of caregiver of the person in the terminal stage and nursing interventions, using a systematic review of the literature. A research in EBSCO and ProQuest and sought Full Text scientific articles, published between 1998 and 2008, using the following keywords: "Palliative care", "Family", "Nursing" and "Needs" was made. The method PI[C]OD was used to select 14 items of total 77. The care needs the person in the terminal stage are: communication, relationship of trust and security, recognition and operationalization of desires; preparation for mourning; needs for information, training, involvement in care, emotional needs, spiritual needs and resting needs. It was concluded that the family has different needs that require personal intervention of the nurse, through the establishment of a trust relationship.     

Participation of disadvantaged parents in child care research

AIM: To assess the level to which parents from deprived and socially dysfunctional families collaborate in complex and time-consuming research. DESIGN: Home-based study, of early physiological development in infants from a severely deprived area. Overnight continuous recordings of deep-body temperature with twice daily urine collection, parental daily diary of life-events and completion of child care social and psychological assessment by interview questionnaire. Measurements taken between age 6-12 weeks, each lasted 8-12 h per night, averaging four nights per baby. Level of parental participation assessed in relation to ongoing lifestyle pressures. Setting Home based. Inner city deprived estate. PARTICIPANTS: Random sample of mothers with newborn healthy infants. MEASUREMENTS: A total of 87 overnight deep body temperature recordings were made on 22 infants each lasting 8-12 h; 174 urine samples were taken; and 22 sets of questionnaires were completed. RESULTS: Of 62 inner city deprived parents, 39 (62%) agreed to participate. 22 (35%) completed the study. Ongoing lifestyle pressures were high including incidents of burglary, fire and family violence. Family and partner pressures and life crises overwhelmed 10 non-participations. CONCLUSIONS: Research partnerships can be developed with underprivileged families facing severe life-events. Parents were highly motivated to complete what they perceived as important infant care research.     

Meeting the child care needs of low-income families

Recent public policy changes have focused attention on the child care needs of families who are struggling to become or remain economically self-sufficient. This review essay describes public policies designed to assist low-income families, and it examines the ways in which the child care problems those families face differ from those of more advantaged families. Studies of child care choices show that low-income families value the same child-oriented characteristics of child care arrangements as do more advantaged families, but their choices are limited by pressing adult needs for care of acceptable quality that is affordable, available at odd hours, and offered at accessible locations. Steps that child care professionals can take to work with public agencies and low-income parents to address the child care needs of this vulnerable group are discussed.     

Ethical and legal considerations in the provision of nutritional support to the perioperative patient

Despite the extensive current literature on ethics, very few publications have specifically addressed the ethical issues surrounding the provision of nutrition to perioperative patients. Four publications are particularly relevant and highly recommended [1-4]. This review is an attempt to draw attention to those ethical issues that are relevant to the use of nutritional support in the perioperative patient and offer guidance on appropriate action by clinicians. Emphasis is on adult patients rather than children and not on the issues that surround the terminally ill patient. General principles are discussed first and then the application of these principles.     

Providing regular relief; considerations for palliative care in the Netherlands]

Over the last few decades the attention devoted to the palliative aspects of medicine, particularly those in hospital care, has declined due to the emphasis on medical technology. In Anglo-Saxon countries a review of this development resulted in structured palliative care that benefited terminally ill patients with a progressive fatal disease, especially cancer patients. Due to increasing national and international criticism of both the practice of euthanasia (assumed to be too liberal) and the lack of attention devoted to structured palliative care in the Netherlands, the Dutch government decided to improve the structure of palliative care. The government's viewpoint is based on the assumption that good palliative care that includes adequate pain control benefits patient care and might eventually lead to fewer requests for euthanasia. The improvements to palliative care should be realised by means of improvements in the structure, training and knowledge. Six academic medical clusters have been designated as Centres for the Development of Palliative Care (Dutch acronym: COPZ) for a 5-year period. Each COPZ must develop the various aspects needed to improve palliative care within the region it serves and ensure that its activities are carefully coordinated with those in the other centres. Research will focus on measuring the efficacy of palliative care as well as ethical and epidemiological aspects. A government committee will assess the appropriateness of the activities undertaken by each of the centres.     

Bridging the continuum: nutrition support in palliative and hospice care.

Clinicians and patients in today's technically focused healthcare environment are often faced with decisions of what should be done vs what could be done. The decision to provide or not provide nutrition support during palliative care and hospice care requires an understanding of and respect for patient wishes, an appreciation for the expectations of the patient and family, and open and effective communication. There can be confusion and disagreement concerning what nutrition therapies should be continued and which ones stopped. These decisions can be facilitated by answering the question: When do the burdens of nutrition support outweigh the benefit to the patient? The patient, family members, and healthcare providers should openly discuss and agree upon the goals of nutrition support during palliative care and hospice care.     

Parental employment and rural school-age child care needs

School-age child care needs and problems in rural communities were investigated for 3,648 families. Parental employment status was found to influence types of child care utilized and the types of care problems experienced by parents. Less than 1% of all children were found to receive only parental in-home after-school care. One of every five children received patchwork care of three or more types. Implications for community-based policy decisions are discussed.Parts of this research were funded by the College of Human Resources and Family Sciences and the Institute of Agriculture and Natural Resources of the University of Nebraska. Journal Series No. 10533, Agricultural Research Division, University of Nebraska.     

Ethical considerations related to the provision of care and treatment in vaccine trials

Ethical principles of beneficence and justice combined with international human rights norms and standards create certain obligations on researchers, sponsors and public health authorities. These include treatment provision for participants enrolled in clinical trials of vaccines, drugs and other new preventive and curative technologies and methods. However, these obligations are poorly defined in practical terms, inconsistently understood or inadequately applied. Vaccine clinical trial designs normally define standards of prevention applicable to the population where the trial is to take place. The present document addresses specifically the setting of standards applicable to care and treatment in vaccine trials. The lack of clear guidance on how to achieve the optimal synergy between the development of new health technologies, on the one hand, and the promotion and protection of ethical and human rights principles, on the other, is a barrier to the progress of health research and therefore to the advancement of public health. The World Health Organization and UNAIDS have engaged in a series of consultations in Africa, the Americas, Asia and Europe to reflect on how this aim could best be achieved. This document highlights the outcome of these consultations. It proposes a structured approach to consensual decision making in the context of the clinical trial of vaccines against such public health challenges as HIV and newly emerging or threatening epidemics. A structured approach involving investigators and sponsors in a consultative process with trial communities and other stakeholders in research will ensure that the needs and legitimate expectations of trial participants are appropriately met, obligations towards them are delivered and, as a result, ethical research is facilitated in the interest of public health.     

A maternal and child health program to prepare and support parents in the postpartum

The Maternal and Child Health Program Kit has been developed to prepare and support parents in the postpartum. The kit responds to four objectives: to help families to get to know their babies; develop feelings of competence; set realistic expectations for the postpartum; and to identify and use supports and resources. In developing the kit, two target groups have been identified--the primary group, the parents; the transmitter group, the educators. The kit includes question booklets at the bedside that encourage mothers to ask questions; resource cards for health professionals that facilitate consistency in information giving; information sheets to provide concise information on topics that cover detailed information or emotional areas; four slide-tape shows on breastfeeding and a coloring book for siblings. The Maternal and Child Health Program Kit is currently being evaluated.     

Improving nutrition and physical activity in child care: what parents recommend

A large percentage of children in the United States spend part of their day in out-of-home child care. As rates of obesity continue to rise, especially among young children, child care has become a focus for nutrition and physical activity intervention. Parental involvement is an important component of these efforts. During summer 2006, parents of children in child care were surveyed to better understand their perceived quality of meals, snacks, and physical activity at the child-care center, and their recommendations for improvement. Parents of children who attended 94 licensed child-care centers in North Carolina were invited to complete a brief survey of perceived quality of meals, snacks, and physical activity at their centers using close-ended questions. Open-ended questions were used to identify suggestions for improvement. Five hundred eight parents from 91 child-care centers completed the questionnaire. The majority of parents reported quality of meals and snacks at the center as either excellent (30% meals, 27% snacks) or good (42% meals, 46% snacks). The main recommendations for improving meals and snacks were to increase fruits and vegetables and provide a variety of healthful foods. The majority of parents categorized the quality of physical activity at the center as excellent (36%) or good (46%), and suggested more structured, outdoor activities for children. Findings from this study provide insight into key areas of concern for parents regarding the nutrition and activity environment of child-care centers. This information may be used to create or modify interventions or policies and to help motivate parents to become advocates for change in child care.     

The information and support needs of Iranian parents of children with autism spectrum disorders

Internationally, increasing numbers of children are being diagnosed with an autism spectrum disorder (ASD), but there is a dearth of studies outside more affluent countries as to parents’ understanding of this condition and the support they receive. Forty-three parents were recruited from schools and clinics in Tehran and interviewed individually using a structured interview schedule. Thematic content analyses identified a lack of parental understanding about autism and its causes, along with parents’ reactions to the diagnostic process and the dearth of information available to them. The majority of parents were dissatisfied with the professional assistance provided for their children and many lacked informal support from their families. The provision of accurate information through informal parent-to-parent support seems to be the most feasible means of assisting Iranian families to adjust to having a child with ASD within the family.     

Employer-supported child care: Assessing the need and potential support

Three hundred and fifty randomly-selected employees of a large state-supported university were surveyed about the effects of their own and others' child care problems on their work, and about their need for and willingness to support an on-site child care center. Almost half of the respondents reported that their work had been disrupted by child care problems of other employees. A high proportion of employees with children said their work had recently been disrupted by their own child care problems and that many of these disruptions could have been avoided had an on-site center been available. Men were as likely as women to be late, miss work, and leave work early to care for children. Employee support for on-site child care was strong, as indexed by widespread willingness, among all categories of employees, to make a financial contribution to a center. These data suggest that employers should not consider company-sponsored day care as a special-interest benefit.The authors would like to express their appreciation to Robert G. Gehling for generating the random sample of employees.