Needs of young children with cancer during their initial hospitalization: an observational study.

The aim of this study was to describe young (under the age of 7) children's needs as expressed by their behavior, body language and verbal expression through observations during their initial hospitalization after being diagnosed with cancer. Twelve children under the age of seven were followed during 26 hours with non-participant unstructured observations. Field notes were written after each observation and transcribed into a narrative text, which was analyzed by content analysis at both manifest and latent level. Five themes were identified, of which "need to have the parent close by" was the most prominent. The other themes were "need to play and feel joy," "need for participation in care and treatment," "need for a good relationship with the staff," and "need for physical and emotional satisfaction." The results indicate that the children needed their parents and the parents' presence helped the children to express other needs. Professionals need to support the child and his or her parents so that the parents in their turn can support and alleviate their child's hospitalization and cancer treatment.     

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.     

Psychosocial needs of parents of infants admitted to neonatal care: A qualitative study

This study aimed to explore the psychosocial needs of parents whose infants required neonatal care and to identify strategies to optimise parental psychosocial wellbeing. An exploratory qualitative study, comprising semi-structured interviews was undertaken with nineteen parents (mothers = 16, fathers = 3). The data were analysed thematically, and three themes and associated subthemes highlight interlinking issues in terms of parents’ needs for stability during a time of uncertainty; their needs for connection with staff, other parents, and their infant; and a need for flexibility in the type, and timing of support. Social connectedness theory offers a lens for how psychosocial support can be provided during neonatal care. This requires opportunities for parents to socialise and receive information, instrumental and/or emotional forms of social support via staff and peers, and to create a sense of belonging and value as parents.     

A study of parental involvement in pediatric hospital care: implications for clinical practice

BACKGROUND: Although it has become common practice for parents to stay with their sick child in hospital, most hospitals lack routines and staff guidelines for involving parents in care processes and decisions. AIM: To gain a deeper understanding of factors that influence parental involvement and to clarify the parental role in the hospital care of chronically ill children. METHODS: Semistructured interviews with 14 parents of chronically ill children. RESULTS: Four themes were identified: support, professionalism, work environment, and responsibility. These themes describe the experience and perceptions of parents who regularly spend time in the hospital with their children. CONCLUSIONS: Clinical practices regarding parental involvement need to be established to optimize the hospital care of chronically ill children.     

Concerns and needs of children with epilepsy and their parents

PURPOSE: Having epilepsy often interferes with a child's and his or her family's quality of life, but specific concerns have not been explored. The purpose of the study was to explore in-depth the self-reported concerns and needs of children with epilepsy and their parents. METHOD: A focus group methodology was used with 2 child groups and 2 parent groups. DATA ANALYSIS: Themes were independently identified by each investigator, who then met to discuss the themes until 100% agreement was reached. RESULTS: Child themes included "talking at my level" and "feeling different from others." Parent themes included "difficulties, struggles and problems," "need for information," and "fears and concerns." CONCLUSION: Findings from this study suggest that attention needs to be directed to assessing informational and emotional support needs during the diagnostic process. Ongoing assessment is also necessary because children and parents have continuing needs beyond the initial encounter with healthcare professionals.     

Integrative review: parent perspectives on care of their child at the end of life

This integrative review aims to describe parents' perspectives on end-of-life care for their children. Fifteen publications from a literature search of the Cochrane databases, CINAHL, MEDLINE, and PSYCHinfo were included in the review. Recurring themes included poor communication/lack of information, strained relationships/inadequate emotional support, parental need to maintain parent/child relationships in life and death, quality of care continues after the death of the child, influence of services/planning on parent/child impacts quality of life, and the difficult decision to terminate life support. No studies were identified that focused on parents' perspectives on the care their child received at the end of life. Further research that focuses on the special needs of parents at this difficult time is needed.     

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.     

Parental participation and mismanagement: A qualitative study of child care in Iran

The purpose of this study was to explore parents' and nurses' experiences of parental participation in child care in hospitals in Iran. Using thematic analysis, the data were collected through interviewing 14 parents and 11 nurses from two pediatric hospitals. The results showed that four major themes emerged, including the necessity of a parent's presence, the unplanned and informal delegation of care to the parents (which itself had five subthemes: the parents as nurses, the delegation of care without sufficient and planned parental training, informal parent-to-parent support, the continuum of parents' willingness to participate, and the neglect of parents' needs), the inconsistency of care, and the parents as informal evaluators of care. Based on the study's findings, effective communication by nurses with parents is required. Nurses need to make an ongoing assessment of parents' wishes for involvement and negotiate care accordingly, with enough support and supervision to warrant quality of care.     

Adult children of parents with mental illness: Dehumanization of a parent – ‘She wasn't the wreck in those years that she was to become later’

Children who have lived with parental mental illness experience long‐standing reduced health and social outcomes, alongside ongoing personal distress. While there has been some dialogue regarding interventions to support children who are living with parental mental illness, there remains a paucity of knowledge regarding adult children's experiences and potential needs. Given this, the aim of the present study was to establish parenting narratives of adult children who had experienced childhood parental mental illness. This included their experiences of being parented alongside their own subsequent parenting roles. Three men and 10 women, ranging from 30 to 78 years old, met individually with a researcher to tell their stories. Narratives were thematically analysed to establish themes. The findings of the study demonstrated that individuals who have lived with childhood parental mental illness dehumanized their parent with mental illness. The authors argue that all mental health services should be underpinned with a whole of family assessment and care philosophy. There is also a need for all mental health services to consider how policies and procedures might inadvertently dehumanize clients who are parents, which could contribute to familial dehumanization. This could prevent the dehumanization of parents who experience mental illness to preserve parental and child relationships.     

The needs of parents of pediatric oncology patients during the palliative care phase

The death of a child is considered one of the greatest stresses a parent can experience. It has been suggested that death from childhood malignancies is more stressful for parents than death due to other chronic diseases. The purpose of this qualitative study is to identify parents' perceptions of their needs while their child was dying of cancer. Twelve parents of eight children, who died of various types of cancer 1 to 3 years ago, were interviewed by the primary investigator. These children died either in hospital or at home. Interviews were tape recorded, transcribed and analyzed by the investigators. Three needs were identified: (1) The need to have the child recognized as special while retaining as much normality within the child's and family's lives as possible; (2) The need for caring and connectedness with health care professionals; and (3) The need to retain responsiblity of parenting their dying child. Findings suggest that parental needs are similar regardles of where the death occurred. Implications for nursing practice and areas for further research were identified.     

Parental support needs during pediatric resuscitation: A systematic review

BackgroundResuscitation of a child is one of the most critical times that parents need support, and parental support is fundamental to providing family-centered care in high acuity settings. The aim of this systematic review was to appraise and synthesize studies conducted to examine the support needs of parents during resuscitation of their child from their own perspective.MethodThe PRISMA model guided the systematic literature search of Google Scholar, PubMed, Cochrane, Scopus, and Ovid for studies published until the end of 2020. Keywords used were: family support, family-centered care, family needs, resuscitation, CPR, children, neonatal, pediatric, family presence, family-witnessed, and parents.ResultsThere were 787 articles located. After reviewing for relevancy, 21 articles met criteria and were included in this review. Findings indicate the needs of parents during resuscitation of their child include: Spiritual and cultural support; Communication with the child before and after resuscitation; Professional behavior from staff; Receiving information; Presence at resuscitation; Trust in the resuscitation team; and Having physical and mental needs met.ConclusionParents have differing support needs when their child is resuscitated in the hospital, and meeting these needs is critical for providing family-centered care.     

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.     

Wonders and worries of parenting a child with Asperger syndrome & nonverbal learning disorder

PURPOSE: To describe the prevalent joys and pressing concerns of parents of children with Asperger syndrome (AS) and nonverbal learning disorder (NLD). DESIGN AND METHODS: An exploratory study of written responses of 103 matched couples from survey data gathered in a larger study that examined the parental experiences of raising a child with AS and NLD. Participants were recruited from two national Internet Web sites for parents of children with AS and NLD. Data were qualitatively analyzed to develop categories and themes. RESULTS: Prevalent joys of mothers and fathers included child characteristics such as personality traits of the child, observing their child happy, and watching him/her grow, mature, and succeed. Parents' most pressing worries focused on adulthood and the future of their child. CLINICAL IMPLICATIONS: The findings of this study can inform the care given by nurses in the pediatric, family, and mental health settings. Family nurses are in a unique position to assess and respond to the special adaptive needs of families of children with learning disorders such as AS/NLD. As part of routine health screening and well-child visits, providers can ask about the joys and assess the beliefs and worries parents have; this could lead to reinforcement of their strengths and motivations and better meeting of their needs.     

Parents' perceptions of care-giving to a child with attention deficit hyperactivity disorder: an exploratory study

Attention deficit hyperactivity disorder (ADHD) is the most common neurobehavioral childhood disorder in which parental care-giving is found very stressful. Limited qualitative research is found on their care-giving experiences. This study aimed to explore Chinese parents' experiences of care-giving to a child with ADHD at home. It was conducted at one Child and Adolescent Mental Health Unit in Hong Kong using qualitative exploratory approach. A purposive sample of 12 parents was recruited. Semi-structured interviews were conducted, each lasting about one hour. Content analysis was used to analyze the data. From the interview data, four themes were identified, including: concept of the illness, barriers to child care in ADHD, psychological effects in care-giving, and positive aspects of care-giving. The parents indicated a variety of life problems and health concerns in care-giving. The findings may help nurses understand the perceptions and barriers towards parental care of a child with ADHD in a Chinese population and consider parents' educational needs in care-giving.     

Parental and Child Anxiety Perioperatively: Relationship,Repercussions, and Recommendations

PurposeElective surgical procedures predictably cause stress and anxiety for children and their parents. This can have a negative effect on the child's short-term and long-term psychological and physiological outcomes. This narrative review examines perioperative child anxiety and existing interventions to reduce child and parent perioperative anxiety. The aim was to identify a need and gaps in knowledge for future study.DesignPeer-reviewed articles were examined to identify themes in the literature on interventions in place to reduce child and parent perioperative anxiety and to identify any gaps in knowledge for future study.MethodsA narrative review of 62 peer-reviewed articles was conducted.FindingsEvidence of themes aimed at lowering perioperative child anxiety using medication, cognitive educational, and play therapy approaches emerged through the literature search. A relationship between parental anxiety and the effect on the child's anxiety was supported, yet interventions that target the parent were limited cognitive education interventions and were found to be implemented only in a small number of hospitals.ConclusionsA clear gap is the lack of research on the effects of parental interventions on the short-term and long-term negative behavioral and physiological outcomes of child perioperative anxiety. Research is needed to further explore the effect of a preoperative psychotherapeutic intervention to allow parents to express anxieties and discuss them with a trained professional in the absence of children. A systematic review or further research would help determine if a psychotherapeutic intervention for the parents would lower child anxiety perioperatively.     

An observational study of the level at which parents participate in decisions during their child's hospitalization

When a child is hospitalized, the parents find themselves in an unfamiliar environment and their parental role changes. They are in a stressful and often anxiety-filled situation and it may be difficult for them to participate in decisions. The purpose of this study was to examine the extent to which parents participate in decisions during the course of events when their child is hospitalized. Thirty-five parents of 24 children (aged 5 months to 18 years) were followed by mobile observation during their child's hospitalization in a paediatric department in Sweden. Three researchers analysed field notes in three steps, using manifest and latent coding. In step 1, 119 situations that included a decision process were identified. In step 2, the situations were assessed according to a five-level scale concerning how the parents' wishes, desires or values had been respected. In step 3, each situation was scrutinized with respect to factors influencing the extent of the parents' participation. The results showed that parents have varying ability to be involved in decision making. Professionals need to communicate more openly with them in order to identify and satisfy their needs because some parents are unwilling or incapable of expressing them.     

School re-entry for the child with chronic illness: parent and school personnel perceptions

PURPOSE: The number of children returning to school with chronic illnesses has increased during the past decade. Studies have suggested that school personnel are not well informed about chronic illness, receive little or no training, and feel unprepared to deal with these children in the classroom. Few studies address the concerns of parents when their children return to school. The purpose of the study was to identify and describe specific concerns and educational needs of parents and school personnel. METHOD: Telephone interviews were conducted with 21 parents. Twenty-four questionnaires were completed by school personnel, social workers, principals, psychologists, teachers, and school nurses. Content analysis was used to explore the data for recurrent themes. FINDINGS: Five areas of concern were evident in the survey responses of parents and school personnel: (a) how parents informed the school about the child's illness (breaking the news), (b) the processes related to the child's actual re-entry into the school (making the transition), (c) the ongoing monitoring of the child's health status both parents and teachers felt necessary (watching the child), (d) the need to teach school personnel about unexpected health problems (teaching the teachers), and (e) school personnel's expectations for the child (working with the child). Specific examples of positive and negative experiences related to these themes are provided.     

Relationships of family history of disease and child weight status to child routines: Multi‐mediating effect of parental feeding practices and perception of child's weight

The present study is a secondary data analysis of a cross‐sectional survey conducted among 129 parents of preschoolers from northwest Florida, USA. It examined the multi‐mediating effect of parental feeding practices and parents' perception of child's weight in the relationships of family history of disease and child's weight to child routines. Children's height and weight were measured, and body mass index was calculated. Path analyses were performed to test the mediation model using AMOS 25.0. The mediating analysis revealed that restriction mediates the relationship between family history of disease and child routines. Restriction and monitoring were significant mediators between child's weight and routines. Given the critical impact of parents on childhood obesity, understanding the mediating roles of parental feeding practices is imperative, as such practices might be susceptible to intervention. Health‐care providers should assess parental feeding practices in their practice settings.