Challenging the philosophy of partnership with parents: a grounded theory study

BACKGROUND: Parent participation is viewed as a pivotal concept to the provision of high quality nursing care for children and their families. Since the 1990's, the term 'partnership with parents' has increasingly been reported in the literature and adopted as a philosophy of care in most paediatric units in the United Kingdom. OBJECTIVES: To explore children's, parents', and nurses' views on participation in care in the healthcare setting. DESIGN: Using grounded theory, data were collected through in-depth interviews, and participant observation. Sample consisted of eleven children, ten parents and twelve nurses from four paediatric wards in two hospitals in England. RESULTS: Most nurses assumed that parents would participate in care and viewed their role as facilitators rather than 'doers'. Nurses reported that the ideology of partnership with parents did not accurately reflect or describe their relationships with parents. Parents could never be partners in care as control of the boundaries of care rested with the nurses. Parents felt compelled to be there and to be responsible for their children's welfare in hospital. CONCLUSIONS: The pendulum of parent participation has swung from excluding parents in the past to making parents feel total responsibility for their child in hospital. It is argued that the current models or theories on parent participation/partnership are inappropriate or inadequate because they do not address important elements of children's, parents' and nurses' experiences in hospital.     

Using Parents' Concerns to Detect and Address Developmental and Behavioral Problems

purpose . Half of all children with disabilities are not identified before school entrance, precluding their participation in early intervention programs with known value in reducing high school dropout rates, increasing employment, delaying child-bearing, and reducing criminal behavior. Screening tests that can greatly improve detection rates have not been popular in primary care. This article describes an alternative approach in an evidence-based technique relying on professional elicitation and interpretation of parents' concerns.
population . 971 children from pediatric practices, day-care centers, public schools, and their siblings.
conclusions . Research shows that parents' concerns are as accurate as quality screening tests and that parents are equally able to raise important concerns regardless of differences in education and child-rearing experience. Parents' concerns can be elicited quickly, and 92% of parents can answer questions in writing while in exam or waiting rooms. Parents' concerns can help make a range of other important decisions about children's developmental and behavioral needs.     

Parent’s experiences of their child’s withdrawal syndrome: a driver for reciprocal nurse-parent partnership in withdrawal assessment

Withdrawal assessment in critically ill children is complicated by the reliance on non-specific behaviours and compounded when the child’s typical behaviours are unknown. The existing approach to withdrawal assessment assumes that nurses elicit the parents’ view of the child’s behaviours.Objective and research methodologyThis qualitative study explored parents’ perspectives of their child’s withdrawal and preferences for involvement and participation in withdrawal assessment. Parents of eleven children were interviewed after their child had completed sedation weaning during recovery from critical illness. Data were analysed using thematic analysis.SettingA large children’s hospital in the Northwest of England.FindingsParents experienced varying degrees of partnership in the context of withdrawal assessment and identified information deficits which contributed to their distress of parenting a child with withdrawal syndrome. Most parents were eager to participate in withdrawal assessment and reported instances where their knowledge enabled a personalised interpretation of their child’s behaviours. Reflecting on the reciprocal nature of the information deficits resulted in the development of a model for nurse-parent collaboration in withdrawal assessment.ConclusionFacilitating nurse-parent collaboration in withdrawal assessment may have reciprocal benefits by moderating parental stress and aiding the assessment and management of withdrawal syndrome.     

Nurses' beliefs about family involvement in a children's hospital.

Children's hospitals throughout North America have implemented many changes during the past 15 years. In recognition of the central role of parents in the lives of their children, policies and procedures have been implemented to enable parents to participate in various aspects of their children's care. However, the extent to which attitudes of nurses have changed to support a more active parental role is less evident. In a project to formulate a philosophy of nursing for a children's hospital, 22 nurses were asked a wide range of questions about nursing and family-centered care. Although all nurses expressed explicit support for the concept of family-centered care, some of their practices and beliefs suggested otherwise. This article describes their responses and suggests recommendations for future research, education, and nursing practice.     

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.     

Parental influence on models of primary prevention of cardiovascular disease in children.

BACKGROUND: Lifestyle behaviors such as overeating and physical inactivity contribute significantly to CVD, the leading cause of morbidity and mortality among adults globally. CVD risk factors that begin in children often track into adulthood. Parents are believed to influence the health behaviors of their children. OBJECTIVE: To review the literature on parental influence on children's health beliefs and behaviors, particularly eating and exercise behaviors as indicators of CV health, school-based CVD risk reduction programs, and racial/ethnic, gender and socioeconomic considerations for models of primary prevention of CVD in children. METHODS: Seventeen studies that included parents as either a source of information, change agent or participant in a CVD risk reduction intervention were identified searching the Medline, CINAHL and PsycINFO databases from 1980 through 2002. RESULTS: Children's lifestyle health beliefs and behaviors are significantly influenced by positive parental modeling and involvement in exercise and healthy eating; parental influence on children's behavior lasts beyond adolescence; parents are effective teachers of health habits at home when prompted by health educators; and parental influences vary by ethnicity/race, socioeconomics and gender. CONCLUSIONS: A broader base of knowledge that is socioculturally sensitive must be developed about what parents and children believe is healthy, how parents model beliefs and behaviors for their children, and how to build self-efficacy for positive health behaviors.     

Parental attitude and coping behaviors in families of children with epilepsy

This study investigated the relationship between parental attitudes toward their children's epilepsy and parental coping patterns. Subjects were 27 parents whose children had epilepsy. Parental attitude was measured using the Fishbein Expectancy-Value Model, while coping was measured using the Coping Health Inventory for Parents. Significant positive correlations were found between parental attitude and the coping pattern of Maintaining Family Integration, Cooperation and Optimistic Definition of the Situation (r = .42, p less than .02). Parental attitude was also positively related to the coping pattern of Maintaining Social Support, Self-esteem and Psychological Stability (r = .32, p less than .05). Results suggest parents with positive attitudes toward their children's epilepsy use more positive coping behaviors than parents with less positive attitudes.     

Is the sufficiency of discharge instructions related to children's postoperative pain at home after day surgery?

BACKGROUND: Parents are expected to alleviate their children's pain at home after day surgery, and the methods of pain alleviation should be taught to the parents by the hospital staff. However, the lack of information related to children's pain alleviation has been pointed out in several studies. AIM: To describe the relationship between the parent-rated sufficiency of discharge instructions and the postoperative pain behaviours of 1- to 6-year-old children at home after day surgery. METHOD: Questionnaires were handed out to mothers (n = 201) and fathers (n = 114) whose child had undergone minor day surgery in 10 Finnish central hospitals. Percentages and cross-tabulation with chi-square test were used in data analysis. ETHICAL ISSUES: The ethical board in each hospital accepted the study. Parental participation was voluntary. RESULTS: The parents considered the discharge instructions to be fairly sufficient, but criticized their content, method of providing and timing. Insufficiency of the instructions was related to children's postoperative pain behaviours at home. STUDY LIMITATIONS: The fairly low response rate of this study prevents generalization of the findings to all Finnish parents. CONCLUSIONS: Both the content, the methods of providing and the timing of discharge instruction need to be developed in children's day surgery. Special attention should be paid to written instructions, which should be given to the parents prior to the day of the child's surgery. Further research is needed to explore the skills of hospital staff in advising the parents and other factors explaining children's postoperative pain at home.     

Parental attitudes toward death education for young children

An exploratory study was conducted to ascertain perceptions of parents toward the role of early childhood educators in teaching young children about aspects of death education. A secondary objective was to contrast perceptions of parents with those of teachers toward death education for young children utilizing data from a previous study. Although parents of young children generally agreed with statements depicting the need for early childhood educators' self-development, communication with children, interaction with children's parents, and curriculum planning, they expressed significantly less support than teachers for death education as a part of early childhood education. Moreover, although parents acknowledged the importance of children acquiring an ecumenical understanding of and respect for others' beliefs about death, they did not wish teachers to share their personal philosophical or religious beliefs about death with young children. Parents also exhibited a more protective attitude than teachers relative to children's questions and expressed concerns about death.     

Parents' perceptions of their 1-6-year-old children's pain.

BACKGROUND OF THE STUDY: Parents' perceptions of children's pain may have influence on how children's postoperative pain is alleviated at home after discharge from hospital. PURPOSE OF THE STUDY: To describe parents' perceptions of 1-6-year-old children's pain. METHODS: Mothers (N=201) and fathers (N=114) whose child had undergone a day surgery in 10 Finnish central hospitals between October 2000 and September 2001 filled in a questionnaire including statements of pain perceptions, a Visual Analogue Scale to assess children's pain intensity and Parents' Postoperative Pain Measure (PPPM) to measure children's pain behaviours. RESULTS: Most of the parents suggested that adults have the responsibility to alleviate child's pain and that alleviation of child's postoperative pain prevents the child's fears during future visits in child welfare clinic. However, majority of parents described that postoperative pain decreases every day or that pain is always a part of surgery. Differences in parents' perceptions were found by both parents' and children's background variables. Parents' perceptions of children's pain were related to children's pain intensity and pain behaviours after surgery. CONCLUSIONS: Parents' perceptions of children's pain were related to children's pain after surgery at home. Adequate information of children's pain should be provided to the parents before discharge to promote children's pain alleviation at home. Special attention should be paid on parents' expectations of boys' higher pain tolerance.     

Eating habits and physical activity of adolescents in Katowice - the teenagers' declarations vs. their parents' beliefs

Aims and objectives. To analyse eating and physical activity preferences among adolescent school children and to compare the teenagers' lifestyle declarations with their parents' beliefs. Background. Unfavorable behavior in eating habits and physical activity may result in serious dysfunctions and diseases, such as eating disorders and incorrect body mass. Design. A retrospective cross-sectional study conducted in 2010-2011. Methods. The data was collated from 711 pupils and 266 parents. The survey included questions on: breakfast consumption, types of food eaten for breakfast, time of supper, the daily number of meals, the quantity of fruit and vegetables, food products purchased in the school shop, as well as the type and level of physical activity. Results. In the population of children aged 14-15?years, 10% do not eat 1st breakfast and 15% do not eat 2nd breakfast, 50% eat dairy products for 1st breakfast, 70% have sandwiches for 2nd breakfast, 45% most frequently buy snacks in the school shop, 65% prefer physical activity in the form of team games, and 90% willingly participate in PE classes. The parents' beliefs differ from their children's declarations with regard to: breakfast consumption, the number of meals a day, the quantity of fruit, and participation in PE classes. Conclusions. The lifestyle of the studied adolescents is within the norms recommended for their age group, although there is a tendency to skip breakfast. A positive aspect is the adolescents' engagement in physical activity. Parents underestimate their children's level of physical activity and overestimate their daily number of meals. Relevance to clinical practice. The study confirms the validity of conducting health education, addressed to both children and their parents, with regard to correct eating habits and physical activity, as well as prevention of eating disorders.     

Caring for parents of hospitalized children: a hidden area of nursing work

Children are the recognized patients when admitted to hospital but their parents can also present demands for care by nurses. Involvement in care can be stressful for parents, particularly when children are required to undergo unpleasant procedures. Parents turn to their families for support in the first instance but some also look for care from nurses. Consequently parents can present a need for care of themselves to nurses whose primary patients are children. In this paper the experiences of a group of parents who became co-clients of nurses are considered along with the views of nurses working on the same ward. The discussion arises out of a larger study of the experiences of the parents of children admitted to a surgical ward in a children's hospital. The principal purpose of the study was to examine parents' and nurses' perceptions of their participation in the care of hospitalized children. The work of caring for parents is found to be ad hoc and unpredictable. The implications of the study for practice and policy are considered.     

Parent or nurse? The experience of being the parent of a technology‐dependent child

AIMS: This paper reports a study exploring parents' experiences of caring for a child who is dependent on medical technology, and in particular of performing clinical procedures on their own children. BACKGROUND: A group of children with a continuing need for the support of medical technology have emerged in community settings as a result of medical advances and government policies. Caring for these children has a significant social and emotional impact on parents, because of their specialized and intensive care needs. Obtaining appropriate and coordinated home support services is problematic. METHODS: Grounded theory techniques were used, and in-depth interviews were conducted with the parents of 24 children. FINDINGS: Parents' accounts revealed that their constructions of parenting were shaped by the nature of their role in caring for their child and by the transformation of their homes by medical equipment and personnel. They described themselves as having a role that had both parenting and nursing dimensions. Parents managed this tension and defined their role and relationship to their child to be primarily one of parenting by differentiating parental care-giving and its underpinning knowledge from that of professionals, particularly nurses. CONCLUSIONS: Parenting a technology-dependent child alters the meaning of parenting. Professionals need to recognize that providing care has a substantial emotional dimension for parents, and that they need opportunities to discuss their feelings about caregiving and what it means for their parenting identity and their relationship with their child. A key professional nursing role will be giving emotional support and supporting parents' coping strategies. Parents' perceptions of nurses raise questions about whether nurses' caregiving is individualized to the needs of the child and family, and whether parental expertise is recognized.     

Parents' motivation for seeing a physician

OBJECTIVE: To explore situations in which parents with an ill child consult a physician and to identify trigger factors for consultation. DESIGN AND SETTINGS: Qualitative interviews with parents of young children. Parents were asked to describe the situation in which the decision to contact the physician was made. SUBJECTS: A total of 20 families selected from a birth cohort from Frederiksborg County. The cohort numbered 194 of 389 children born between 1 and 28 February 2001. The cohort was followed prospectively from the age of 9 to 12 months by diary (January-April), and retrospectively from birth to the age of 9 months by questionnaire. Families were chosen on the basis of information provided in a questionnaire, diary illness pattern and a telephone conversation. RESULTS: Nine trigger factors associated with physician contacts were identified. Parents' answers demonstrated how their feelings and logical reasoning while caring for an ill child led them to consult the physician. The main reasons for consultation were children's protracted or aggravated symptoms. Parents initially tried to handle the situation but when unsuccessful information and advice was sought by consulting a physician. CONCLUSIONS: Parents consult the physician when they feel overtaxed, afraid, or inadequately prepared to care for their ill child. They considered seriously whether to consult a physician or not.     

Chinese parent's use of nonpharmacological methods in children's postoperative pain relief

Parental participation in paediatric postoperative care is common in China. However, the knowledge is limited on what methods parents use to relieve their children's postoperative pain in hospital. The purpose of this study was to describe what nonpharmacological methods parents use to relieve their children's postoperative pain and factors related to this. A previously validated Scandinavian questionnaire survey was conducted in five provincial hospitals in Fujian, China, in 2004. Parents (n = 206) whose children had undergone operation were asked to complete questionnaires concerning nonpharmacological methods for children's pain relief. The response rate was 88%. Results show that the most commonly used methods by parents were emotional support strategies, helping with daily activities, distraction and imagery. Breathing technique was the method used least frequently. Fathers and parents who were older, more educated, employed and with earlier hospitalization experience with their children used pain alleviation methods more frequently than mothers and parents without these characteristics. Moreover, parents used some methods more frequently with boys, younger children, as well as children admitted for selective operations, with longer duration of hospitalization and with moderate or severe pain. Parents utilized various nonpharmacological methods for children's pain relief, especially those easy to use. This study may serve to focus healthcare providers' efforts on educating parents with respect to various nonpharmacological pain alleviation methods available for postoperative pain. Furthermore, this study provides parents an opportunity to be aware of their role in their children's pain management.     

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.     

Comparisons of parent cardiovascular knowledge, attitudes, and behaviors based on screening and perceived child risks

Questionnaire reports and universal screening procedures from 244 children (kindergarten, 5th grade, and 9th grade) were used to explore differences in parent health knowledge and attitudes of cardiovascular risks among children and parental involvement in promoting healthy lifestyles relative to whether their children were identified as being overweight or at risk of being overweight. The knowledge, attitudes, and behaviors of the parents of children who were identified as being at risk or overweight were further examined based on their perceptions of their children's level of risk. Parents' reports demonstrated significantly greater parent encouragement and knowledge of issues related to eating healthier foods and ways to cut calories among parents of children who were identified as being at risk or already overweight. A significant portion of parents underestimated their children's weight risks. Differences in parents' appraisals of their children's overweight risks were associated with differences in their knowledge, attitudes, and behaviors. These findings illustrate the need to address inaccuracies in parents' assessments of their children's overweight risks to improve parent investment and involvement in children's health modification programs.     

Parent-child interaction: a comparison of parents' perceptions in three groups

PURPOSE: To evaluate a children's version of the ICF that takes children's dependency on their parents and a developmental perspective into consideration. METHOD: This study explored how 91 parents perceived child participation in terms of parent/child immediate interaction, and desires for ideal interaction in relation to body impairments and activity limitations. Similarities and differences were investigated in three matched groups of families through questionnaires. Group 1 consisted of parents of children with profound multiple disabilities, Group 2 was developmentally matched and Group 3 was matched according to chronological age. RESULTS: The children with profound multiple disabilities expressed the same amount of emotions as the other groups, but they had difficulties expressing more complex emotions. Parents perceived the children's behaviour styles in a similar way in the three groups. There were significant differences in how the immediate interaction was perceived with parents to children of Group 1 perceiving difficulties in maintaining joint attention and directing attention. CONCLUSIONS: The results suggest that parental perceptions of the interaction with their children with profound multiple disabilities in the immediate setting to a certain extent are related to the body impairments of the children but not strongly to communicative skills /activity limitations. Thus, to focus communication intervention on participation and interaction, assessment and questions to parents have to be focused directly on these issues.     

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.     

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.