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.     

Hospital staff perceptions of parental involvement in paediatric hospital care

AIM: This paper reports a study of hospital staff perceptions of parental involvement in children's hospital care. BACKGROUND: Previous research has shown that parents are expected and encouraged by hospital staff to be actively involved in the care of their hospitalized children. At the same time, parents have expressed a need for improved communication with paediatric hospital staff to clarify both parental and staff expectations and preferences about this involvement. Few studies, however, have studied hospital staff perceptions of parental involvement in the care of hospitalized children and their implications for clinical work. METHODS: A cross-sectional questionnaire study was conducted among paediatric hospital staff in October of 2003. Questionnaires were distributed to a total of 338 staff, including all physicians, Registered Nurses and nursing auxiliaries working on oncology, surgery and neurology units in three university children's hospitals in Sweden. RESULTS: A total of 207 questionnaires were returned, yielding a response rate of 61%. Exploratory and confirmatory factor analyses of the 26-item questionnaire resulted in the creation of two indices, Work Routines and Work Strain. Oncology staff reported having better work routines for involving parents in their children's care and they experienced less strain from parental demands compared with staff on other paediatric units. Staff perceptions and workplace routines regarding parental involvement did not differ statistically significantly by profession or by length of work experience. CONCLUSION: Staff perceptions of parental involvement may be related to clinical specialty. Oncology units may find it easier to establish routines for parental involvement, thereby experiencing less work strain in their interactions with parents. There is a need to further study staff perceptions of parental involvement and their implications for the staff work situation in both Sweden and other countries.     

Parenting foster children with chronic illness and complex medical needs

The experience of parenting foster children with chronic illness and complex medical needs was explored in a phenomenological inquiry with 10 foster families. Thirteen participants currently fostering chronically ill children with complex medical needs were interviewed. Recorded interviews were transcribed and analyzed using van Manen's method. Data analysis yielded five essential themes: Foster parents described being committed to the child in their care, coming to know the needs of a medically complex foster child, and identifying effective and ineffective interventions encountered through day-to-day living with a medically complex child. Furthermore, they shared what it was like to experience loss of a child through relinquishment and death. Last, for these parents, fostering children with complex health care needs was a life-changing experience. The findings show that parenting a chronically ill foster child with complex medical needs is a multifaceted experience having implications for multiple disciplines.     

Parents' perspectives of health-care delivery to their chronically ill children during school

This study sought to identify parents' perspectives about issues relating to the provision of health care to their chronically ill children while they are at school. A survey of parents with school-aged children attending the paediatric subspecialty outpatients clinic in a large teaching hospital was designed to collect both qualitative and quantitative data about this topic. Findings included that 48% (n =161) of parents participating in the study said their child required some form of care or attention while at school. Highest scoring areas of need included supervision of meals (36%), administering insulin (19%), and administering nebulizers/puffers (19%). In addition, 75% of parents with children requiring health care while in school said that special knowledge and skill was required to deliver this care; 56% of these parents did not feel that teachers had the knowledge that would enable them too look after their chronically ill child during school hours.     

The impact of care on family and health-related quality of life of parents with chronically ill and disabled children

Purpose: Parents of disabled and/or chronically ill children are more vulnerable regarding their health compared to parents of healthy children. This study examines how far the burden of care is associated with health-related quality of life (QoL) in parents, across different illnesses and disabilities. Moreover, it is unclear whether and to which extent familial resources can explain the association between parents’ care burden and health. Method: Data stem from a survey with the German Children’s Network, a self-help umbrella organization of parents and families of chronically ill and disabled children. Data collection was conducted nationwide with a standardized online questionnaire, which included children’s diagnoses and severity, burden of care, family and socioeconomic status, health-related QoL (SF-12) and family impact (Impact on Family Scale, IFS). 1567 parents participated. Results: A higher burden of care is associated with higher risks for poor health-related QoL. Especially, social impact and financial burden, which are both associated with care, can help to explain these associations. Conclusions: Future interventions should focus not only on the affected child but also on the whole family system and its social integration, as this seems likely to relief parents from burden of care. Therefore, a sustainable cooperation of health care institutions and professionals with self-help groups and parental initiatives is recommended.

• Implications for Rehabilitation

• Parents of disabled and chronically ill children are a vulnerable group regarding their health-related quality of life.

• A higher burden of care is associated with less social contacts, higher financial burden and higher help-needs in the household, which significantly contribute to higher health risks.

• Rehabilitation should take these constraints into account and put a stronger focus on the family of disabled and chronically ill children to support their inclusion.

• A sustainable and formally anchored collaboration with self-help and patient groups is recommended.

     

Coping in parents of children who are chronically ill: strategies for assessment and intervention

Estimates indicate that approximately 31% of children are affected by one or more chronic illnesses. Furthermore, caring for a chronically ill child imposes a host of long-term stressors for parents that need to be addressed by sensitive, evidence-based interventions. This article will: (a) review stressors of childhood chronic illness for parents over time; (b) provide a summary of tools that can be used to assess parental coping, (c) delineate important nursing assessments, (d) review interventions that have resulted in improved parental coping outcomes, and (e) describe a theoretical framework that can be used to assess and intervene with parents of chronically ill children.     

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.     

小儿心脏术后监护期间父母压力及焦虑状况调查

目的 :探讨先天性心脏病 (CHD)小儿父母亲在小儿术后监护期间的压力及焦虑状态。方法 :应用状态 -特质焦虑量表(State -TraitAnxietyInventory ,STAI)及Miles监护病房父母压力量表 ,通过问卷调查方法对 34例CHD小儿父母的压力感受及情绪状态进行评估。结果 :父母亲在小儿监护期间压力主要有 5种 :小儿身体状况 ,与患儿分离 ,父母亲角色的改变 ,与医护人员的沟通 ,医疗费用 ;母亲所感受的压力程度大于父亲。结论 :小儿心脏术后监护期间父母亲的压力及焦虑状况应引起护理人员的重视 ,护理人员有必要为父母亲提供心理支持及健康教育     

Parental perceptions of health care for children with chronic illness--a population-based study in a Swedish primary care district.

The division of responsibilities between specialized and primary health care for children with chronic illness is unclear. The utilization and perceptions of primary and specialized care were examined by means of a questionnaire mailed to the parents of all chronically ill children and a randomly selected control group. No difference in sociodemographic variables of responders (70%) and nonresponders was found. The study comprised 98 index and 168 control children. The index children utilized both primary and specialized care more than controls. The overall satisfaction with health care was high, but primary care did not come up to the expectations of many chronically ill children's parents. Satisfaction with specialized care but not with primary care had improved during the previous 15 years. Recognition in primary care of childhood chronic illnesses and their psychosocial consequences is important. In co-operation, the two health care levels together could enable a comprehensive, well-coordinated, and continuous care for these children.     

Parental Perceptions of Health Care for Children with Chronic Illness-A Population-based Study in a Swedish Primary Care District

The division of responsibilities between specialized and primary health care for children with chronic illness is unclear. The utilization and perceptions of primary and specialized care were examined by means of a questionnaire mailed to the parents of all chronically ill children and a randomly selected control group. No difference in sociodemographic variables of responders (70%) and nonresponders was found. The study comprised 98 index and 168 control children. The index children utilized both primary and specialized care more than controls. The overall satisfaction with health care was high, but primary care did not come up to the expectations of many chronically ill children's parents. Satisfaction with specialized care but not with primary care had improved during the previous 15 years. Recognition in primary care of childhood chronic illnesses and their psychosocial consequences is important. In co-operation, the two health care levels together could enable a comprehensive, well-coordinated, and continuous care for these children.     

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.     

Growing up and living with cystic fibrosis: everyday life and encounters with the health care and social services--a qualitative study

The purpose of this qualitative study was to illuminate experiences of growing up and living with cystic fibrosis (CF). The patients' and their families' encounters with health care and social services were of particular interest. Four focus groups (adults with CF and parents of children with CF) were conducted. Three main themes emerged from the analysis: "From uncertainty to certainty," "A demanding but normal life," and "A wish for continuity, stability, and respect." As also documented by other studies on the chronically ill, normalization seems to be an important strategy, a strategy that seems not to be fully understood by the helpers.     

Satisfaction with care: a study of parents of children with congenital heart disease and parents of children with other diseases

AIM: We compared parents of children with congenital heart disease (PCCHD, n=1092) with parents of children with other diseases (PCOD, n=112) regarding satisfaction with their children's care (SCC). We also examined the association between parental/patient characteristics and SCC. METHOD: The parents completed a questionnaire about such areas as satisfaction with care, children's health status, and financial situation. The design was cross-sectional and data were gathered over 20 consecutive days. RESULTS: The univariate and multivariate analyses showed that PCCHD were more satisfied with their children's medical care and waiting period for treatment of their ill children than PCOD, although the difference was only modest. Furthermore, mothers were less satisfied with staff attitudes than fathers, with the lowest satisfaction among mothers of children with CHD. However, the multivariate analysis indicated that less satisfaction with care was more associated with decreasing child age, unemployment, financial burden of disease, social isolation and psychological distress than with children's diseases, their severity and parental gender. CONCLUSION: We corroborated some previous findings and may have provided new insights regarding determinants of SCC among parents. Interventions to improve SCC may need to address issues of parental psychological distress, socialization, and financial burden of illness. Possible ways of achieving this are discussed. Finally, research in a longitudinal format is needed to further scrutinize determinants of parental SCC.     

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.     

Awareness of parental illness: a grounded theory of upholding family equilibrium in parents on long-term sick-leave in primary health care

ObjectiveTo understand the main concern of chronically ill parents and how they resolve this concern in relation to their children.DesignGrounded theory.SettingThree primary health care clinics in Sweden.SubjectsThirty-two interviewed parents and their children.Main outcome measuresProcesses and typologies of upholding family relationships.ResultsA concern of chronically ill parents is sustaining family equilibrium, achieved through a process of upholding family relationships. How a parent upholds depends upon his/her comprehension of the illness and of their child’s need for parenting. In response to the parent’s upholding behaviours, children mirror the effect of the illness to the parent, the child’s specific behaviour depending on his/her level of comprehension regarding the parent’s illness. Their combined behaviours create an awareness context that may be closed, concealed, suspicious, conflicted, mutual pretence or open.When the parent drives and facilitates the evolution of comprehension, the context quickly evolves from closed to open. When the parent hinders the process by masking and resisting the child responds by probing and proving and they become locked into a suspicious or conflicted awareness context with high relational tension. To create family equilibrium the parent needs to reveal and facilitate the awareness process.ConclusionParents on long-term sick leave in primary health care can need assistance to facilitate the awareness context of themselves and their child.Implications: Clinicians can identify the current awareness context of their patient and help their patient towards increased understanding of their illness; their child’s needs and the parental capacities needed to reveal the illness and its impacts.

Key Points

• Children are affected when parents are ill; they wish for information on their parent’s illness. Effective interventions are available in settings other than primary health care and possibilities seen by GPs and families in Scandinavian primary health care have been previously described. There is a knowledge gap in how parents view themselves and their parenting when ill in primary health care. An analysis grounded in interviews was needed to generate a hypothesis (theory) of parental concerns and behaviours.
• This theory proposes that an important concern of chronically ill parents is to sustain family equilibrium, which they attempt to do by upholding family relationships.
• Specific upholding behaviours include masking, resisting, colluding, and revealing. In response, children will engage in mirroring behaviours. Which paired behaviours are enacted will depend upon the respective levels of comprehension of parent and child regarding the illness and on the child’s need for parenting. In their interactions, parent and child create one of six awareness contexts.
• Identifying the current awareness context in the family about chronic parental illness provides clinicians with a conceptual tool to better support those families locked in suspicious or conflicted awareness contexts.

     

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.     

Voices of Parents of Children with Neurofibromatosis 1(NF)

This presentation, phase I of an American Nurses’ Foundation funded study, is based on unanalyzed qualitative data from a prior study (Dylis, 2003) exploring family functioning in a large international sample of parents of children with Neurofibromatosis 1 (NF), the most common single gene disorder involving the nervous system. The purpose of this study was to identify themes from parental responses to two questions: ‘What do parents of children with NF want from health care providers?’ and ‘What were parental experiences at the initial time of their child’s NF diagnosis.’ Preliminary content analysis themes included parental desires for provider sensitivity and for providers to provide holistic care, accurate information, appropriate communication, referrals, support, and respect. Diagnostic experience themes were symptom management based on the NF diagnostic criteria or specific system manifestations, expressed concern from others resulting in health care intervention, and stories of diagnostic delays, inaccuracies, and dismissal of parental knowledge. The results from this phase might provide beginning qualitative evidence to assist in the future development of individualized nursing interventions aimed at improving the quality of life for families having a member(s) with NF. Knowledge of parental differences and similarities is essential in developing these interventions.