Parent involvement in children''s pain care: views of parents and nurses

AIM OF THE STUDY: This study investigated the views of parents and nurses about the involvement of parents in the management of their child's pain during the first 48 hours after surgery. BACKGROUND: Children's pain management has been found to be problematic and in need of improvement. Nurses are the key health care professionals with responsibility for managing children's pain. Parents can make important contributions to assessment and management of their child's pain. METHODS: Using a phenomenological approach, nurses and parents were interviewed about their perceptions of parent involvement in pain management. FINDINGS: The findings indicated that parental involvement in their child's pain management is superficial and limited in nature. Parents described a passive role in relation to their child's pain care and conveyed feelings of frustration. Only a minority of parents expressed satisfaction with their child's pain care. Nurses perceived that there was adequate involvement of parents and adequate pain management for children. CONCLUSIONS: These findings may be somewhat explained by differing views and a lack of effective communication between parents and nurses. There is a clear need for nurses to discuss parent involvement with parents and negotiate roles in relation to pain management.     

Impact of asthma education received from health care providers on parental illness representation in childhood asthma

The burden of asthma has increased dramatically despite increased understanding of asthma and new medication regimens. Data reported here are part of a larger study investigating factors that influence parental asthma illness representation and the impact of this representation on treatment outcomes, including the parent/health care provider relationship. We investigated the influence of asthma related education provided by health care providers on these outcomes. After interviewing 228 parents of children with asthma, we found that asthma education received from the child's health care providers positively influenced parental belief systems, especially attitudes towards anti-inflammatory medications and facts about asthma. Parents who reported receiving more education also reported stronger partnerships with their child's health care provider.     

Parental experiences: care of children with high and intermediate imperforate anus

In this study parental experiences of care of children with high and intermediate imperforate anus were evaluated. A group of 45 parents of children with high and intermediate imperforate anus and two control groups participated. Data collection with individual questionnaires concerning the child's hospital care, information to the parent and the child, and involvement in the care of the child were performed. Parents of children with imperforate anus reported being less satisfied with the care of their child, and they were less content with information about their child's treatment compared with the control groups. The parents had been extremely involved in the follow-up treatment. Constipation and fecal incontinence are common and involve suffering for the children and their parents. Parents have to be motivated and supportive and have a great deal of patience to be able to put up with caring for these children, and it seems as if health care professionals have underestimated their problems.     

Care of sick children by parents: a meaningful role

Parental involvement in their child's care in hospital has undergone great change over the last century. Studies have shown how 'maternal deprivation' and 'separation anxiety' expressed by children are detrimental to a child's recovery in hospital. Striving efforts have been made to develop family-centred care, promote normality of the family unit and continue with the normal routine of the child's life within the limitations of a hospital environment and the child's illness. Expectations of the parental role in hospital need to be identified and expressed from both the parents and staff to establish an understanding that will ultimately be best for the child. Many studies have highlighted benefits to both parent and child from parental participation in hospital. However, disadvantages have been identified from resident parents who feel captive to their new situation and role. Efforts for family-centred care are highly advocated now. Care-by-Parent units have been set up in some areas to promote this idea and, although many advantages have been identified, they are not without their problems. The success of parental involvement is dependent on both parents' and staff's attitudes, enthusiasm and willingness to work together.     

Parents' support and satisfaction with their child's postoperative care

It is recognized that parents' presence during their child's hospitalization is of benefit to the parents and the child. However, the level of parental involvement in their child's care may be influenced by many factors, such as the amount of support nurses provide for parents. This article reports on two themes from the findings of a larger study on parental involvement in children's postoperative pain management - parental support and parents' satisfaction with their child's postoperative pain management. The aim of the larger study was to explore both nurses' and parents' perceptions of parental involvement in their child's postoperative pain management. The methods used were both qualitative and quantitative. The qualitative method of phenomenology was used to guide 20 nurse and 20 parent interviews. Quantitative methods involved surveying the nurses and parents on their perceptions of how supportive the nurses were towards the parents. The charts of 20 children were reviewed for pain-related data. This article reports on the issues of parent support from the results of the survey, and on satisfaction relating to their child's postoperative pain management from the parent interviews. The findings demonstrated that nurses perceived that parents were receiving more support from them than that which parents felt they were receiving. Parents were more satisfied with their child's pain management and children received more analgesia when they were cared for by a lower grade nurse.     

Parents' refusal of medical treatment based on religious and/or cultural beliefs: the law, ethical principles, and clinical implications

When parents apply religious or cultural beliefs concerning spiritual healing, faith healing, or preference for prayer over traditional health care for children, concerns develop. Medical care is considered one of the most basic of all human needs, and yet parents may elect to apply religious or cultural beliefs in place of traditional Western medical care for their children. Because memberships in religious groups that have beliefs concerning prayer and health care for children are increasing, the topic is of great importance for pediatric health professionals. This article describes parental refusal of medical care, and it discusses the legal, ethical, and clinical implications.     

Negotiating lay and professional roles in the care of children with complex health care needs

BACKGROUND: Children with complex health care needs are now being cared for at home as a result of medical advances and government policies emphasizing community-based care. The parents of these children are involved in providing care of a highly technical and intensive nature that in the past would have been the domain of professionals (particularly nurses). AIMS OF THE PAPER: To assess how the transfer of responsibility from professionals to parents was negotiated, the tensions and contradictions that can ensue, and the implications for professional nursing roles and relationships with parents. DESIGN: Using a Grounded Theory methodology, in-depth interviews were conducted with 23 mothers, 10 fathers and 44 professionals to gain insight into the experience of caring for children and supporting families in the community. FINDINGS: From the parents' perspective, their initial assumption of responsibility for the care of their child was not subject to negotiation with professionals. Prior to discharge, parents' feelings of obligations, their strong desire for their child to come home, and the absence of alternatives to parental care in the community, were the key motivating factors in their acceptance of responsibility for care-giving from professionals. The professionals participating in the study had concerns over whether this group of parents was given a choice in accepting responsibility and the degree of choice they could exercise in the face of professional power. However, it was following the initial discharge, as parents gained experience in caring for their child and in interacting with professionals, that role negotiation appeared to occur. CONCLUSION: This study supports other research that has found that professionals' expectations of parental involvement in the care of sick children role can act as a barrier to negotiation of roles. In this study, parental choice was also constrained initially by parents' feelings of obligation and by the lack of community services. Nurses are ideally placed to play the central role not only in ensuring that role negotiation and discussion actually occurs in practice, but also by asserting the need for appropriate community support services for families. Being on home territory, and in possession of expertise in care-giving and in managing encounters with professionals, provided parents with a sense of control with which to enter negotiations with professionals. It is important that changes in the balance of power does not lead to the development of parent-professional relationships that are characterized by conflict rather than partnership.     

Shared decision making in school age children with asthma

Shared decision making in health care is a mutual partnership between the health care provider and the patient. Traditionally, children have had little involvement during their medical care visits or in decisions regarding their health care. Shared decision making in children with asthma may enhance their self-confidence as well as improve their self-management skills. Allowing the child to participate during the visit requires assessing the child's competence at different ages and abilities. Specific communication techniques to use with children during medical encounters include visual aids, turn-taking, clarifying communication, and role modeling. Providers additionally can offer strategies to parents on how to provide general information about asthma and treatments based on the child's questions and interest. The goal for school age children with asthma is to change dyadic interactions between the provider and parent into triadic interactions to improve the child's asthma management.     

Grandparents of children with developmental disabilities: perceptions,beliefs, and involvement in their care

This exploratory study evaluated the perceptions and beliefs of grandparents regarding their grandchild with a developmental disability and their involvement in his/her care and the impact of the child's disability on their lives and on their relationship between them. The sample included 16 grandparents of children with a severe developmental disability ranging in age from 5-10 who were studying in a special school. Data was collected by using semistructured interviews in the home of the grandparents. The findings indicated that grandparents' involvement and satisfaction with their role were a function of their attitudes towards disabilities in children in general and their relationship with their adult children, as well as their own life experiences. Their involvement with their grandchild with developmental disability served to strengthen the relationship between the grandparents. An important implication of the study is that professionals should plan interventions to support and encourage grandparents to be more involved in the care of the child with developmental disability.     

The experience of stress in parents of children hospitalized with long-term disabilities

This paper discusses parents' perceptions of their stress when their children are hospitalized with long-term disabilities. The study used a qualitative method. Data were collected with 40 parents through in-hospital interviews, and were analysed using the method of constant, comparative analysis. Parents' own interpretation of their stress experience is considered in relation to their perception of their role. The data suggest that the hospitalization of a child requires parents to make changes in their usual parenting role. In describing the nature of the changes required, parents identified the need to understand the illness experience; become familiar with the hospital environment; adapt to their changing relationship with the child and other family members; and negotiate with health professionals about their child's care. Verbatim accounts are used in this paper to illustrate parents' interpretations of their hospital experience. Parents perceive their role in their hospitalized child's care differently than health professionals do, and it would appear that much parental stress is attributable to the 'space' between health care workers' understanding of parents' experience, and parents' own comprehension. If nurses understood parents' own perception of their hospital-related stress better, more effective nursing care could be developed. Further research is needed in this important area.     

Hospitalized children with chronic illness: parental caregiving needs and valuing parental expertise

Parents who care for a child with a chronic illness are forced to relinquish much of the control of the child's care when the child is hospitalized. By using the family systems theory as the underlying framework, the amount of control that parents of children with chronic illness wanted over their hospitalized child's care, and the degree to which parents felt health care professionals valued their expertise, was examined in a national sample of 50 parent caregivers. Participation in information sharing and technical care were areas over which parents wanted the most control. Nurses and attending physicians were rated highest in valuing parental expertise. Content analysis of an open-ended question on parental control revealed that parents felt a higher quality care was given at home than in the hospital; nurses were too busy or understaffed to provide optimal care in the hospital; and the child's control of care and decision making should increase as the child grew older.     

Nurses’ attitudes towards perinatal bereavement care

Title. Nurses’ attitudes towards perinatal bereavement care. Aim. This paper is a report of a study conducted to explore the factors associated with nurses and midwives’ attitudes towards perinatal bereavement care. Background. Caring for and supporting parents whose infant has died is extremely demanding, difficult and stressful. In some situations nurses may experience personal failure, feel helpless, and need to distance themselves from bereaved parents because they feel unable to deal with the enormity of the parental feelings of loss. Method. A correlational questionnaire study using convenience sampling was carried out in Singapore in 2007 with 185 nurses/midwives in one obstetrics and gynaecology unit. Results. Regression models showed that nurses/midwives with religious beliefs and those with more positive attitudes to the importance of hospital policy and training for bereavement care were statistically significantly more likely to have a positive attitude towards perinatal bereavement care. Nurses emphasized their need for increased knowledge and training on how to cope with bereaved parents and requested greater support from team members and the hospital. Conclusion. Bereavement counselling education and preceptorship supervision are recommended to reduce this stressful experience, increase the confidence and expertise of novices, and lead to increased quality of care for bereaved parents.     

Exploring the role of partnership in the home care of children with special health needs: qualitative findings from two service evaluations

BACKGROUND: Advances in therapeutics and the increasing survival rate among premature infants means that more parents now have to adapt to caring at home for children with special health needs. Community paediatric nurses require a wide range of specialist skills and the concept of partnership appears to be foundational to their care of parents and children. OBJECTIVES: Drawing on data gathered during the course of two service evaluations of community paediatric nursing care of children with special health needs, this paper explores the extent to which a concept analysis of partnership can be verified empirically. EVALUATION METHODS: In-depth interviews were carried out with parents, a range of professionals and members of different agencies who received training from the nursing team. The sample comprised 17 parents and 20 professionals. FINDINGS: Respect for parental routine was strongly evidenced in both areas, was highly valued in the training of carers and contributed to mothers' confidence. Parents acknowledged that nurses' interactional strategies engendered trust, demonstrated respect for them and empathy for their child. These features of care resonate strongly with partnership attributes identified in the conceptual analysis. Nursing support of parents demonstrated a deep understanding of different styles of adult learning, of how to alleviate psychological and emotional stress and of parental vulnerability. In addition, there was evidence of extensive partnership working across health and social care boundaries. The findings demonstrated the wide range of such collaboration, the time necessary to make it work and the benefit that accrues to the families. CONCLUSIONS: It was possible to make empirical links with the partnership attributes identified in the concept analysis although the data highlight the complexity of some of the individual attributes. While there may be overlap between professional-parent partnership and partnership at the level of service co-ordination, there may also be important differences which merit further enquiry. In terms of policy and practice, findings suggest that partnership in the community setting is central to effective service delivery but is knowledge, skill and resource intensive.     

Culture, communication and child health

Cultural beliefs and values implicitly and explicitly shape every aspect of the way we parent our children and how we communicate about parenting. To appropriately support parents in this new and challenging role, child health services for parents in Australia need to do more than acknowledge a diverse range of cultural practices. While many health professionals believe they act in culturally sensitive ways, we need to closely examine this belief, question the cultural assumptions implicit in the information we give, and assess the extent to which our interactions are culturally appropriate. In this paper, we present a critical review of the literature on health care provision for migrant women and families. We then suggest a need to re-examine the values, beliefs and attitudes within cultural frameworks that inform how child health professionals communicate. Specifically, communication between child health professionals and migrant parents requires further analysis. We suggest that professionals need to reflect on the cultural self rather than solely on the culture of others.     

A study of the effectiveness of a pain management education booklet for parents of children having cardiac surgery.

Parents need education about pain so they can support their hospitalized child and manage their child's pain at home. The purpose of this study was to examine the effectiveness of a pain booklet on parental pain support to children experiencing postoperative pain. A randomized, repeated measures, experimental design using a pain education booklet and a standard care comparison group was used to study parents of 51 children (3 to 16 years of age) having cardiac surgery. Measurement techniques used to assess differences in parental pain management included: attitudes about pain medication, child and parent pain ratings (Oucher), opioids used, recovery, satisfaction, and comfort in communication. Results indicate that children do report moderate levels of pain postoperatively. Parents who were exposed to the pain assessment and management for parents education booklet preoperatively significantly increased their knowledge and attitudes toward pain medication scores from pre- to post-test, whereas those in the control group remained stable. Post-test scores were not significantly different between groups. Child and parent pain ratings were significantly and positively correlated. Practice implications include the use of an educational booklet about pain with parents before surgery to increase their knowledge about and attitudes toward pain management. Additionally, a parent may provide an alternative pain report when a child is unable to or unwilling to self-report their pain.     

Attitudes of mental health professionals towards service user involvement

Patient‐centred care and user involvement in healthcare services are much emphasised globally. This study was the first step in a multicentre research project in Finland to improve service users' and carers' opportunities to be more involved in mental health services. The aim of the study was to assess attitudes of professionals towards service user involvement. The data were collected via an online questionnaire from 1069 mental health professionals in four hospital districts. Altogether, 351 professionals responded. Data were analysed using appropriate statistical methods. According to the results, attitudes of healthcare professionals were more positive towards service users' involvement in their own treatment than in other levels of services. There were also differences in gender, age groups, working places and experiences in the attitudes of professionals concerning service users' involvement in their own treatment. These should be taken into account in the future when planning education for mental health professionals. In spite of governmental guidance on service user involvement and the growing body of knowledge of the benefits associated with it, change in attitudes towards user involvement is slow. Special attention should be paid to the attitudes of professionals working in inpatient care and of those with less working experience.     

Nurses' perceptions of parental involvement in hospital care

Parental involvement is an essential element of quality of care for children in hospital. However, there is often confusion in role perception between parents and nurses which may be affected by nurses' attitudes, their ability to provide information, their communication and interpersonal skills and willingness to relinquish control. AIM: This study examined nurses' perceptions of parental involvement and communication with parents of children in hospital and explored differences in perceptions of recent graduate nurses and more experienced nurses. METHOD: Two focus groups were carried out at a university paediatric hospital in Sweden, one with experienced paediatric nurses (n = 7) and one with recent nursing graduates (n = 6). FINDINGS: Analysis of the discussions identified five themes: clarifying roles, information, work environment, support and clinical competence. These nurses confirmed the belief that involving parents in the child's care is an important part of nursing in paediatric care and suggested that the nurses should play the role of being the communicator with the parents. CONCLUSION: Nurses need to be aware of the impact their communication has on parents and help them to clarify their role as parents in hospital.     

Children with a long-term illness: parents' experiences of care

A diagnosis of a long-term illness in a child will bring on a major upheaval in the lives of the whole family involved and leads to a long-standing relationship with health care personnel. The purpose of this study was to describe parents' experiences with their child's illness and treatment and with their relationships with health professionals during the process of learning to care for their child. Data were collected by conducting open-ended interviews with parents (N = 11) whose child had been diagnosed with a physical long-term illness at least 1 year previously and were analyzed using qualitative content analysis. Parents' needs for information and support varied and consisted of different components in different phases of the process. During the diagnostic phase, parents were recipients of information; it was important for them to receive consistent empathetically provided information. In the next phase, parents, having gained experience of day-to-day home care, engaged in a change toward a two-way flow of information with the professionals; mutual trust was essential for the exchange of information needed for a child's proper care. Without a permanent relationship with health professionals, parents showed lack of trust in professionals' knowledge of their child's condition and care. Professionals' lack of trust in parents' expertise in their child's care was also problematic. Health professionals should lay the groundwork for a partnership in which both parties acknowledge each other's competencies; parents' needs ought to be continuously reassessed. A permanent relationship between families and health care personnel is required to achieve this.