Strategies for feeling secure influence parents' participation in care

This study investigates what makes parents of hospitalized children feel secure and factors influencing their level of participation. It also studies, whether the degree to which parents participate affects their child's pain and sleep during hospitalization. Questionnaires were distributed to a series of parents whose children were discharged from two paediatric surgical wards and one paediatric medical-surgical ward at two university hospitals in Sweden. Parental security is almost equally distributed among three given alternatives: security derived from trusting that professionals know how to take care of the child; security derived from having control over what is happening to the child; and security derived from being the one who knows the child best. Depending upon the strategy chosen, parents want to participate at different levels in their child's care. The results indicate a relationship between parental participation and their estimation of their child's pain. The study confirms a pattern, developed in a previous study, in how parents adopt different strategies affecting their participation during their child's hospitalization. Some parents who wanted to participate in more aspects of their child's care seemed to think that their child had less pain than parents who preferred more limited participation.     

A study of non-response in a questionnaire survey of parents' views of paediatric care

The aim of this study was to examine whether there were differences in quality ratings between respondents and non-respondents to a questionnaire concerning parents' views of paediatric care. This study also examined whether quality ratings differed when questionnaire respondents were asked to reassess certain aspects of hospital care in a follow-up questionnaire. A total of 1094 questionnaires were distributed to parents at the hospital. Three weeks later, follow-up questionnaires were sent home to a random sample of 140 parents who had visited the hospital during the 2 weeks when the main questionnaire was distributed. Forty-six per cent of respondents to the follow-up questionnaire had never received the original questionnaire in hospital, while only seven individuals in the follow-up sample were active non-respondents. Analysis of variance revealed that respondents to the follow-up questionnaire who had never received the main questionnaire did not differ significantly from respondents to the main questionnaire in their ratings of key quality domains. There were no statistically significant differences in quality ratings between parents who responded to both questionnaires and parents who responded to the main questionnaire. For hospital management, it is important to be able to trust questionnaire results. Non-response bias can jeopardize the validity of questionnaire results, which is why studies of non-response are important. The current study pinpoints a number of difficulties that need to be considered when conducting investigations of non-response.     

Patient participation in hospital care: Nursing staffs' point of view

The aim was to investigate nursing staff's perceptions related to patient participation and the parameters affecting it during nursing care. A cross‐sectional study with both a quantitative and qualitative orientation was conducted. The sample consisted of all nursing staff working in medical and surgical wards in three Greek hospitals. A questionnaire was developed and the data were analysed with exploratory factor analysis, whereas content analysis was used for qualitative data. Nursing staff perceived participation as the process of information giving to patients, communication of symptoms by patients and compliance with the staff's orders. ‘Information providing’ and ‘ability to influence and responsibility’ were significant aspects of the content of participation, whereas the parameters affecting participation were related to patients, nursing staff and the care context. These results support patient engagement in dialogue and shared decision‐making, while highlighting the need to implement participation systematically and stimulate changes in nursing care organization.     

Parent-nurse interactions: care of hospitalized children

BACKGROUND: An essential component of quality nursing care is nurses' ability to work with parents in the hospital care of their children. However, changes in the health care environment have presented nurses with many new challenges, including meeting family-centred care expectations. AIM OF THE PAPER: To report a research study examining the experiences of parents who interacted with nurses in a hospital setting regarding the care of their children. METHODS: A qualitative approach was employed for this study. In-depth audiotaped interviews were conducted with eight parents representing seven families. Data collection was completed over a 7-month period in 2001. FINDINGS: Parents characterized their experiences with nurses caring for their children as interactions, and identified the elements of establishing rapport and sharing children's care as key to a positive perception of the interactions. These elements were influenced by parental expectations of nurses. Changes in nurses' approach were reported by parents as the children's conditions changed. CONCLUSION: Nurses were able to work with families in the hospital care of their children in ways that parents perceived as positive. However, in parents' views, their interactions with nurses did not constitute collaborative relationships. A deeper understanding of these interactions may provoke new thinking about how to promote an agency's philosophy, and how nurses enact this philosophy in practice.     

The lived experience of parents enabling participation of their child with a physical disability at home,at school and in the community

Purpose: The aim of this study was to provide an in-depth exploration and understanding of parents’ thoughts, feelings and concerns they experience while reflecting on their actions, challenges and needs in enabling their child’s participation at home, at school and in the community. Method: A naturalistic inquiry with thirteen Dutch parents using interpretative phenomenological analysis. Results: Analysis revealed three super-ordinate themes: “Parents’ experiences and concerns about systems, laws and regulations”, “Parents’ experiences and thoughts about physical and/or social environment” and “Parents’ experiences and feelings of finding and/or enabling an activity”. Parents’ often expressed feelings of disappointment derived from being misunderstood, from dealing with the complexity of systems, from hindrance of participation of their children by the social and the physical environment, and from the lack of leisure activities for their child. It is primarily restrictions in the physical and social environments that urge them to take actions, to experience challenges and think of needs. Conclusions: In-depth exploration and understanding of parents’ articulated matters must be shared and taken seriously by policymakers and service providers. Parents’ knowledge and experiences should be of major relevance to improve paediatric rehabilitation and other services for children with a physical disability.

• Implications for Rehabilitation

• To achieve tailored pediatric rehabilitation, involvement and needs of parents in enhancing their child’s participation ought to be acknowledged.

• Active use of parents’ experiences and knowledge regarding the participation of their child on different levels of decision making may improve daily services in pediatric rehabilitation.

• Aiming for optimal participation of a child with a physical disability at home, at school and in the community, the focus of pediatric rehabilitation needs to shift towards enabling, social and physical, environments.

     

Consultation with children in hospital: children, parents' and nurses' perspectives

Aims and objectives. To explore children's, parents’ and nurses’ views on participation in care in the healthcare setting. Background. Children have a right to be consulted and involved in their care. Design. The grounded theory method was used and data were collected through in‐depth interviews, questionnaires and observation. Sample consisted of 11 children, 10 parents and 12 nurses from four paediatric wards in two hospitals in England. Results. Parents felt that children should be involved in the decision‐making process thereby enhancing and promoting children's self‐esteem and positive self‐regard, which would consequently enhance their overall welfare. Likewise, children expressed the need for consultation and information so that they could understand their illness; be involved in their care, and prepare themselves for procedures. However, children's own opinions and views were underused and they had varying experiences of being consulted about their care and treatment. Nurses appeared to hold varying and discrepant views on the involvement of children in decisions and for some nurses, the child's involvement seemed to be dependent on the child's cognitive maturity and being defined as a rational subject. Conclusion. Health professionals’ communication behaviour may reflect recognition of children's cognitive abilities rather than their competence to understand. The fact that children's nurses appeared to make decisions about involving children in decision making in the absence of a reliable framework was a significant finding and highlights a real problem in the current climate. Relevance to clinical practice. Nurses faced with workforce pressures may encounter considerable challenges to facilitating children's involvement in decisions about their care. Hence it is imperative that nurses’ examine the basis of their decisions and use more explicit criteria for determining children's involvement.     

Levels of anxiety in parents in the 24 hr before and after their child's surgery: A descriptive study

Aims and objectives

To (i) investigate pre‐ and postoperative anxiety levels in parents of surgical patients; (ii) identify factors that affect parental anxiety; and (iii) analyse assistance provided and overall parental satisfaction to assess whether and how this aspect can impact their anxiety level.

Background

Surgery as an event generates anxiety in children and their parents. Children who are anxious before surgery are likely to develop more postoperative psychological and physiological complications than those who are not. The role parents play in influencing emotional states of their children has been well demonstrated. However, specific national programmes aimed at helping parents develop new models for coping are relatively inexistent in Italy.

Study design

Longitudinal study.

Methods

One hundred and one parents of children undergoing surgery at a healthcare facility in Padua, Italy, completed the Italian version of the State‐Trait Anxiety Inventory Form Y questionnaire. They also answered questions about their parents' socio‐demographic situation, the amount and quality of preoperative information received, assistance provided and their overall satisfaction with this information.

Results

The preoperative level of anxiety in parents who were interviewed was higher than Italian normative data, especially in Pediatric Cardiac Surgery and Pediatric Urology departments. Mothers had a significantly higher level of anxiety than fathers. Communicating possible complications of surgical procedures increased anxiety, while providing information about pre‐ and postsurgery nutrition and pain management and providing local anaesthetic on children decreased parental anxiety. Parents expressed a sufficiently high level of satisfaction although they defined the hospital environment as uncomfortable.

Conclusions

Aspects of care that can make hospitalisation less traumatic for parents are as follows: greater support, involving them in the treatment process, improving hospital department admission procedures and providing thorough preoperative information.

Relevance to clinical practice

Healthcare professionals are encouraged to pay attention to communication modalities providing detailed information to parents.     

Children's participation in vaccine research: parents' views

AIM: Vaccine studies that evaluate the persistence of protection following immunisation require subjects to continue participation in a research protocol over many years. As parents' attitudes and opinions may change over time, and with experience of research, it is important to consider the factors influencing parents' decision-making about their child's continued participation in such prolonged vaccine studies. METHOD: Parental views about participation of their child in a one-year follow-up vaccine study were explored by means of a self-administered questionnaire. Of the 254 eligible parents, 187 took part (74 per cent). RESULTS: Parents who provided consent were more likely to agree that having a home visit to take blood was very helpful (p=0.005) and that information obtained during the earlier part of the study influenced their decision to take part in a follow-up study (p<0.0001). Parents who did not consent to their child's participation were more likely to report the presence of personal reasons as a variable influencing their decision (p<0.0001). CONCLUSIONS: The relationship between study staff and parents is the cornerstone for success in performing studies involving vaccines and children. Provision of clear study information (oral and written) and offering the convenience of home visits are important in retaining participants in paediatric vaccine trials.     

Hearing what older consumers say about participation in their care

A study exploring older people's participation in their care in acute hospital settings reveals both consumers' and nurses' views of participation. Using a critical ethnographic design, data were collected through participant observation and interviews from consumers in acute care settings who were over 70 years old and nurses who were caring from them. Thematic analysis identified that older people equated participation with being independent. Importantly, consumers highlighted the complexity of the notion of participation when describing situations where they were unable to participate in their own care. The difficulties in communicating with health professionals and an inability to administer their own medications in inpatient settings were identified as barriers to participation. Understanding what consumers believe participation means provides a starting point for developing meaningful partnerships between health professionals and people receiving care.     

Parental views on participation in their child's pain relief measures and recommendations to health care providers

The purpose of this study was to describe parental views on the factors influencing participation in their 8- to 12-year-old hospitalized child's surgical pain relief measures, and the recommendations to health care providers concerning alleviation of their child's pain. The data were collected by a questionnaire completed by parents (N = 192) whose child was hospitalized in one of the pediatric surgical wards in the five university hospitals of Finland. Results revealed that most of the parents (98%) agreed to having adequate opportunities to participate in their child's care according to their personal preferences; however, only 23% of the parents totally agreed that they had a clearly defined role in their child's pain relief measures. Feelings such as concern, fear, helplessness, anxiety, and depression were commonly experienced by the parents during their child's hospitalization. Most of the parents' recommendations concerned the topic of providing information. The findings of this study have implications for nursing practice.     

A comparison between parents' and therapists' views of their child's individual seating systems

Children with cerebral palsy are often prescribed adaptive seating systems for use in their wheelchairs for the purposes of improving posture and to help prevent the development of long-term deformity. However, clinical experience indicates that parents and the therapists who advocate the use of these systems do not always agree about the wheelchairs. This study discusses the development of questionnaires for both parents and therapists to measure differences in their opinions about the wheelchairs. The questions were developed through clinical experience, validation was through interviews to discuss topics important to the participants, and repeated application of the questionnaire ensured consistency. The reliability of the questions appears satisfactory and the interview responses demonstrate that the questions selected are important to both groups of stakeholders. However, it was found that parental concerns over their children's seating systems concentrated on functional and day-to-day management issues, whereas therapist concerns focused on technical issues and postural management. Both groups of stakeholders agreed that the questionnaires would be a useful precursor to attending a seating clinic appointment, as it could aid communication between the parent and provider and improve the efficiency and satisfaction of such an appointment. It appears the questionnaire has potential as an outcome measurement tool.     

The experiences and views of parents who care for ventilator-dependent children

Discussion in this paper is drawn from the literature examining the management of children with long-term assisted ventilation, and a study of parents' experiences and views of caring for their ventilator-dependent child at home. Difficulties in undertaking research into this group of children are highlighted. Recommendations are proposed regarding future multidisciplinary, multiagency service development in order to meet the needs of ventilator-dependent children and their families.