The social network of children with special healthcare needs in the (in)visibility of nursing care

This study aimed to identify the (in)visibility of nursing care and discuss ways of (dis)articulating this care with family care in the social network of children with special healthcare needs. A qualitative research was performed with health professionals at a pediatric hospital, four units of the Family Medical Program (FMP), and children's relatives living in Niterói (RJ). The field work was put in practice after IRB approval (HESFA/EEAN), consisting of five semi-structured interviews and two group dynamics. Critical Discourse Analysis indicated that nursing care is visible in the child's social network through the nurse's educational and care activities and home visits by the nurisng aide of the FMP. Due to errors in the national health system's referral and counter-referral, mothers articulate the network and not the health service; thus, the reorganization of the system in the State would foster social networks that are less wearing for their families.     

Children's experiences of acute hospitalisation to a paediatric emergency and assessment unit - A qualitative study

Short-stay treatment has become a popular form of care as a strategy to cope with increased demands on health care. There is little research that considers children's experiences of acute hospitalisation to a short-stay care facility such as a Paediatric Emergency and Assessment Unit (PEAU). This study explored the experiences of eight children aged 8-10 years. Semi-structured interviews were carried out to investigate the children's own experiences of being hospitalised in a PEAU. Thematic content analyses were used. Three major themes were identified: the children's understanding of disease, treatment and procedures; the children's experiences of health-care personnel and the PEAU and transformation of everyday life into the settings of the hospital. The children identified the hospital stay as an overall positive experience. The children took part in leisure activities as they would at home and enjoyed time together with their parents while in hospital. In their conversations with staff they adapted to professional terms that they did not necessarily understand. They did not differentiate between professionals. Further work should be considered to clarify the consequences of this. This study has provided some limited insight into the child's experiences of acute hospitalisation, which should inform nursing care.     

The psychosocial experience of parents receiving care closer to home for their ill child

Current health policy in England regarding the management of childhood illness advocates for care to be delivered as close to home as possible. The aim of this article is to report findings from a qualitative component of a larger study evaluating models of care closer to home (CCTH) for children and young people who are ill. The focus is on parents' psychosocial experience of receiving CCTH for their ill child. A qualitative case study design was used, with four Primary Care Trusts in England as the case study sites. In-depth, semi-structured interviews were conducted with 27 parents and one extended family caregiver of children using CCTH services within the case study sites. Interviews were conducted face-to-face and audio-recorded with permission. Data were collected in 2009. There was an overall preference for CCTH over hospital-based care where possible. The parents in this study experienced differing levels of responsibility as part of this care, and responded to this in different ways. Being supported emotionally and socially by practitioners was an important part of receiving CCTH for parents, especially when they had increased responsibility as part of this care. Developing relationships with practitioners appeared to be a medium through which parents received support. If the provision of CCTH continues to expand in line with current policy, provision of support for parents should be considered a fundamental aspect of service development.     

Systematic ethnography of school-age children with bleeding disorders and other chronic illnesses: exploring children's perceptions of partnership roles in family-centred care of their chronic illness

Purpose In this qualitative study, school-age children between 7 and 11 years, living with a bleeding disorder or other chronic illness, defined how they understand their partnership role in family-centred care (FCC), and recommended FCC strategies. Methods This systematic ethnography had three phases: unstructured interviews explored how children understood FCC partnership roles (phase I); document review provided FCC institutional context (phase II); and validation interviews generated FCC partnership recommendations (phase III). This study took place within the area served by a Western Canadian children's hospital. Interviews were held at the hospital or children's home. In phase I, purposive sampling was used to recruit children receiving outpatient care for a bleeding disorder (n= 4) or another chronic illness (n= 4). In phase II, policies and legislation were compared with how children understand their FCC partnership role. In phase III, validation interviews were conducted with children (n= 3) to confirm domains and generate FCC supporting strategies. Data collection and analysis were based on domain analysis and qualitative ethnographic content analysis. Results Phase I outcomes included seven domains regarding how children understood their role as partners in FCC: my best interests, virtues, talking and listening, being involved, knowing, making decisions and being connected. Phase II outcomes revealed how these domains were represented in institutional contexts. Phase III outcomes confirmed domains and generated key strategies to support children's role as FCC partners through graphic representation of FCC as a treasure map, interactive workshop and online game. Conclusions School-age children, living with a bleeding disorder or other chronic illness, similarly want to learn how to be FCC partners by developing competence as healthcare team members, identifying their own best interests, learning how to communicate with 'grown-ups', clarifying roles and goals, and guided opportunities for decision making. Facilitating school-age children's FCC partnership roles is worthy to explore in youth transition programmes.     

Enquiry about the needs of children whose mothers are admitted to psychiatric hospitals

The objective of this study is to assess whether children's needs are taken into consideration in female patients who are admitted to an adult psychiatric hospital. A retrospective case note audit of 100 female inpatients aged between 18 and 55 years over a 6-month period were randomly selected. The medical and nursing case notes of patients with children aged between 0 and 17 were assessed using a proforma. The information collected on mothers consisted of diagnosis of illness, type of admission (whether voluntary or detained), duration of admission, previous psychiatric admissions, patient age, marital status, whether or not employed, relationship with partner, mental health of partner, history of violence, medical history of relevance, family history of mental illness, and whether other agencies were involved. Children data collected consisted of number of children per patient and their ages, an enquiry into the child's welfare, emotional and behavioural development, educational/cognitive development, physical health and development, relationship with family and peers, children's knowledge of parent's illness, alternative care arrangements for child during mother's admission and their relationship to carer, child's involvement in their parents' illness as a carer and actions taken on behalf of the child. Of the 100 patients, 62 had children aged between 0 and 17 years. There was an enquiry into children's welfare in 15 (24%) cases and an enquiry into children's knowledge of their parents' illness in three (4.8%). Actions were taken on behalf of children in 13 (21%) cases, in five cases this was not necessary as children resided elsewhere, and in one case a social work assessment was requested but no subsequent documentation of this being completed. There was no documentation of actions taken in the remaining 43 (69.4%) cases. The results of this retrospective case note audit suggest that children's welfare is not routinely enquired about in female patients admitted to psychiatric hospitals. Actions taken on behalf of children occurred often when there was social services involvement. As a result of this study guidance was issued to all new junior psychiatric staff as part of their induction process to make enquiries about children and their welfare.     

Children's regard for nurses and nursing: a mosaic of children's views on community nursing

In the past decade there has been both an increase in the number of children who receive nursing care in their communities rather than in hospitals, and an increasing willingness to listen to children. This qualitative study used Clark's Mosaic approach to elicit children's views of community children's nursing. Twenty-one children took part in total, with seven children making up a core group who participated in a number of activities for over a year. A non-core group of 14 children were observed receiving care from six community children's nurses. The children had diverse medical conditions, were aged from 11 months to 17 years old and came from diverse social, ethnic and cultural backgrounds. Some children expressed a positive regard for nurses and nursing. Some children a negative regard, others were ambiguous. From these data it is proposed that there is a continuum of regard for nurses. How children regarded nurses did not seem to be related to the nurse's actions, but to the child's understanding of their illness and their involvement in care. Further study is required to clarify the concept and should focus on what effect children's regard for nurses and nursing has on health outcomes.     

Parental concerns about disclosure of a child's HIV/AIDS status in Singapore

A qualitative study was conducted to examine parental concerns over the issue of disclosure with those whose children were diagnosed with HIV/AIDS. Semi-structured interviews were conducted with seven parents and the main issues that arose from the interviews were (a) parents' explanation of their children's medical condition; (b) factors that influence disclosure; (c) factors that hinder disclosure; and (d) parents' perception on the appropriate time for disclosure. Parents viewed disclosure as a single event, as opposed to an ongoing process where varying levels of information on the illness was to be provided in accordance to the children's individual cognitive and emotional development.     

Mothers' view on late postoperative pain management by the nursing team in children after cardiac surgery

Postoperative pain management in children is a complex, multidimensional and subjective phenomenon. It represents a challenge for children, parents and health professionals. This study aimed to understand how mothers assess their children's pain management by the nursing team in the late postoperative phase of cardiac surgery. Empirical data collection was carried out through semistructured interviews with 17 mothers who accompanied their children. Data were subject to qualitative analysis, revealing that, for the mothers, taking good care results from the confidence they vest in the nursing team and from the observation of the medication interventions this team performs. Not taking good care of their children is a consequence of lack of information or inadequate communication between the team and the mothers. The results of this study permit identifying aspects that strengthen and weaken nursing care for these clients, contributing to the improvement of the delivered care.     

Receiving care at home at end of life: characteristics of patients receiving Hospice at Home care

BACKGROUND: Specialist Hospice at Home (HAH) services play an important role in the provision of care for people who choose to die at home. METHODS: A pilot evaluation of a new HAH scheme in East Midlands, UK was carried out between January and December 2003, in which routine data were collected and analysed. RESULTS: In 2003, 155 people received the HAH service. Most patients (83%) were over the age of 60 and had a cancer diagnosis (92%). Almost one-third of patients waited for 2 days or longer to receive care from the HAH scheme. These patients were around three times as likely to be in an inpatient hospice (RR=3.27; 95% CI=1.19-8.95) or an acute hospital (RR=2.85; 95% CI=1.33-6.09) when they were referred. The median length of service use was 4 days. CONCLUSIONS: The HAH service enabled people to die at home in the last days of life. Given the aging population, we would expect the demand for such services to further increase. Shortcomings identified included delay in receiving care for people moving to home from hospices and acute hospitals.     

Understanding an Aboriginal and Torres Strait Islander child’s journey through paediatric care in Western Australia

Objective: To explore caregiver perspectives of their children’s journey through the specialist paediatric service, the Aboriginal Ambulatory Care Coordination Program (AACC), and non‐AACC services at the Perth Children’s Hospital. Methods: Eighteen semi‐structured interviews with families of Aboriginal children were completed. Indigenous research methodology and a phenomenological approach guided data collection and analysis. Results: Four key themes were identified from interviews: hospital admissions, discharge and follow‐up outpatient appointments; communication; financial burden; and cultural issues. Our findings suggest Aboriginal children and their caregivers using the AACC program had more positive and culturally secure experiences than those using non‐AACC services. However, barriers relating to health providers’ understanding of Aboriginal cultural issues and lived experience were commonly discussed, regardless of which service families received. Conclusions: Australian Aboriginal children have an increased use of tertiary hospital care compared to non‐Indigenous children. Healthcare programs specifically designed for Aboriginal children and their families can improve their experience of care in hospital. However, improvements in cultural awareness for other hospital staff is still needed. Implications for public health: Dedicated Aboriginal programs in mainstream services can successfully improve cultural care to their clients, which is fundamental to improving service delivery for families.     

Australian parents' views on their 5-6-year-old children's food choices

The home food environment is central to the development of healthy eating behaviours, but associations between the home food environment and children's food choices are not yet fully understood. The aims of this study were to explore parents' views regarding factors that influence children's food choices and parents' decision-making regarding the food they provide to their children. In-depth one-on-one interviews were conducted using a semi-structured interview schedule. Key concepts and themes were coded independently by two investigators. Participants include seventeen parents (16 mothers and 1 father) of children in their first year of formal schooling (aged 5-6 years). Five main themes emerged from the interviews: food marketing, food availability/food exposure, feeding strategies, modelling of eating and opportunities for food involvement. Parents believed that food marketing influenced their child's food preferences but differed in the ways they managed these influences. The food made available to children was also seen to influence what a child ate. Yet, although some parents believed it was the parents' role to determine what foods were made available to their child, others offered food on the basis of the child's tastes or preferences. The use of food as a reward was a feeding strategy employed by many parents. Family mealtimes were seen as an important opportunity for modelling of eating behaviour by parents. Peers were also seen to influence children's food preferences and eating behaviour. Finally, many parents believed that involving children in the preparation of food had a positive impact on children's food choices. Associations between the home food environment and children's food choices are complex and involve multiple mediators. Parents' views on the promoters and reinforcers of their decision-making regarding food and their child's food choices provide useful insights into these mediating factors. Increased understanding of these relationships is likely to enhance obesity prevention efforts.     

7岁以下流动和常住儿童卫生服务现状及需求调查

目的:了解7岁以下流动和常住儿童卫生服务现状及需求。方法:采取多阶段抽样方法,抽取武汉市江岸和硚口区的两个社区内7岁以下儿童作为对象,用自拟“7岁以下儿童卫生服务现状及需求调查”问卷对其父母进行调查。结果:共调查509名流动儿童和500名常住儿童,其中:①流动儿童免疫接种建卡率(88.62%)低于常住儿童(98.76%);25.40%的流动儿童未接受过体检,体检者其体检次数较常住儿童少;家长对其身体健康关心程度亦低于常住儿童,主要就诊机构也较常住儿童差(P<0.01)。②流动儿童父母对儿童保健知识的总体需求低于常住儿童父母,近1/2的流动儿童父母不了解儿童保健知识,了解者其了解程度亦低于常住儿童父母(P<0.01)。③影响儿童保健服务的主要因素有是否为流动人口家庭、父母文化程度和职业、家庭经济状况等。结论:流动儿童卫生服务状况及需求均较常住儿童差,应采取多种措施提高其保健水平。     

Family relationships in two types of terminal care

This study investigated parent's perception of family relationships in 87 parents from 48 families during the terminal illness and first year following a child's death from cancer. Using the Family Relationships Index, parents' perception of family relationships were compared: (a) to normative data and (b) between home and hospital terminal care. Data collection occurred before death during the terminal phase, and two weeks, four months, and one year post death. The results of data analyses by confidence intervals and t-tests generally indicated that (a) parents' perceived family relationships to differ from "normal" families and (b) hospital based terminal care families presented evidence of better family relationships than home care based terminal care families.     

Family-centred care and health-related quality of life of patients in paediatric neurosciences

Background   Little is known about the influence of contextual factors such as health services characteristics on health-related quality of life (HRQL) for children with a neurological condition. To address this gap, we conducted an exploratory study of the relationship between family-centred care (FCC) and HRQL outcomes in children from neurosciences clinics in a large acute care hospital.
Methods   A total of 187 family caregivers completed questionnaires regarding their socio-demographic status, the severity of their children's condition (FIM™), perceptions of their children's HRQL (PedsQL 4.0) and their experiences of FCC (MPOC-20). Hierarchical regression analyses explored the hypothesis that FCC is a significant predictor of children's HRQL, independent of illness severity.
Results   Illness severity and FCC jointly explained one-third of the variance in children's total HRQL. When FCC was controlled for illness severity, it remained a significant predictor of physical, psychosocial and total HRQL scores.
Conclusions   This study provides evidence that the level of FCC is positively related to paediatric HRQL independent of neurological illness severity. The implication is that the uptake of FCC practices by service providers can positively impact the quality of life of children with neurological disorders.     

A cost study of a general practitioner hospital in the Netherlands

Objective: To perform a cost study of the first general practitioner (GP) hospital in the Netherlands.

Methods: We conducted a cost study in a GP hospital in the Netherlands. Data on healthcare utilisation from 218 patients were collected for a period of one year. The costs of admission to the GP hospital were compared with the expected costs of the alternative mode of care. In the GP hospital three types of bed categories were distinguished: GP beds (admission and discharge by GPs, n=131), rehabilitation beds (recovery from hospital surgery, n=62) and nursing home beds (hospital patients awaiting a vacancy in a nursing home, n=25). GPs were interviewed to indicate the best alternative form of healthcare for the GP bed patients in the absence of a GP hospital (dichotomised for this study into ‘hospital’ or ‘home care’). For the ‘rehabilitation’ and ‘nursing home’ patients the alternative care mode was admission to a hospital.

Results: The mean length of stay was 15 days for the GP beds, 31 days for the rehabilitation beds and 90 days for the nursing home beds. For the GP bed patients the costs were ?2533 per admission compared with ?3792 for hospital stay. For the group of GP bed patients for whom ‘home care’ was the best alternative, the costs were ?2494 for GP hospital days compared with ?2814, the average cost for home care of patients of 65 years and older. For rehabilitation patients the costs per patient were ?4744 compared with ?8041 in a hospital. For patients waiting for admission to a nursing home, these costs were ?13,143 and ?22,670, respectively.

Conclusion: The GP hospital might be a cost-saving alternative for elderly patients in need of intermediate medical and nursing care between hospital and home care. Further research on the cost-effectiveness of the GP hospital compared with home care and nursing home care is needed.     

Mothers' fear of child death due to acute diarrhoea: a study in urban and rural communities in northern Punjab, Pakistan.

The investigation of cultural models of diarrhoeal illness which are employed by mothers and their emotional responses to children's illnesses is presented in a study of 595 households in urban and rural communities in Punjab, Pakistan. The household survey of mothers of children 0-36 months was complemented with in-depth interviews of a subsample of 70 mothers. Findings indicate that diarrhoea must be regarded not only as a disease but as a symptom belonging to several popular illness categories. Mothers' emotional responses to symptoms are in part shaped by the illness categories to which they assign a child's diarrhoea episode, and maternal fears that symptoms of diarrhoea may be life threatening are associated with previous experiences with death of children, with treatment choices and help-seeking. A significantly higher proportion of mothers who fear diarrhoea to be life threatening to their children than mothers with other concerns choose to use NIMKOL, the Pakistan ORS. The necessity of recognizing the complexity of interpretive and emotional processes which shape the care of children and the home treatment of childhood disease is emphasized.     

Providing a children's palliative care service in the community through fixed-term grants: the staff perspective

BACKGROUND: Children's palliative care services have recently been awarded fixed-term grants, aimed at improving the provision of care for children with life-limiting conditions in the community. We report findings of a qualitative study to investigate the experience of a cohort of community children's nurses from teams involved in setting up or extending community-based children's palliative care services. The purpose of the study was to identify factors that affect service delivery, from the staff perspective, and to suggest ways of promoting their sustainable development. METHODS: Semi-structured telephone interviews were conducted with 21 nurses from 12 different teams providing palliative care for children at home and in hospices. Participants were questioned about the services they provided and their own roles in that provision. NVIVO qualitative data analysis software was used to explore themes arising from the transcribed recorded interviews. FINDINGS: Key findings were the importance of physical location in facilitating multidisciplinary communication, the importance of defining role boundaries between existing and new providers of children's palliative care, and the potentially detrimental impact of insecure funding on referral patterns and recruitment to posts. Staff named the opportunity to offer direct 'hands-on' care to families, access to work-based support and networking opportunities as important factors in helping them cope with the stresses involved in managing finite resources and the emotional challenges of their work. CONCLUSIONS: The maintenance of a mixed caseload with a significant proportion of direct care, provision of ongoing support and clearly defined roles are recommended as means of bolstering the ability of staff to develop their services. The deliberate locating of services to enhance communication between staff and guidance on the preparation of funding applications may further contribute to the sustainability of these services.     

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.