Psychosocial Experiences of Parents of a Child With Imperforate Anus

PURPOSE.  This study aims to examine the psychosocial experiences of parents of children with imperforate anus (IA) and to describe their potential positive experiences.
DESIGN AND METHODS.  Parents of IA children and a comparison group answered a questionnaire, which was analyzed quantitatively and with manifest content analysis.
RESULTS.  Social relationships and respect for the child's will were more affected among IA mothers. Positive experiences were revealed in relation to the child, the parent, and the family.
PRACTICE IMPLICATIONS.  Support to parents in caring for a child with IA should be individualized and occasionally undertaken through collaboration with experts from child and adolescent psychiatry.     

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.     

Parental guidance and counselling by doctors and nursing staff: parents' views of initial information and advice for families with disabled children

This paper describes changes that have taken place, over a period of 10 years, in the way physicians and nursing staff in Finland give initial information and advice to the parents about their child's disability. It also discusses the association between quality of information given and parents' feelings of insecurity or helplessness. In the study, we compared the experiences of parents of older (aged 12-17) disabled children with those of parents with younger (aged 7-9 years) disabled children. There were 85 children, whose disabilities were either learning or physical, or, in a few cases, both. Parents completed a questionnaire and were interviewed by a social worker. According to these reports, the initial information and advice received by the parents with younger children about their child's disability and its treatment, and on coping with the child at home, was better than that received by the parents of the older children. The parents of the younger children also reported feeling better prepared to take care of their child. Those parents who reported having received little information and practical advice on coping with their child at home experienced feelings of insecurity and helplessness five times as often as those who were satisfied with the information and advice.     

Mommy first

Parents of children with special health care needs are often required to assume responsibility for the complex care of their children. It is important for pediatric nurses to remember these parents are, first and foremost, the child's parents and primarily responsible for loving their child, providing a safe and secure home, and fostering their child's development as a person. Pediatric nurses should support the parents in the medical/nursing care of their child in whatever way possible so the parents have more time to parent. This account from a mother of a child with developmental delay helps remind us of our need to help support parents in being "parents first."     

Social Issues Among Children With High or Intermediate Imperforate Anus: A Proxy Perspective

PROBLEM:  Children with imperforate anus (IA) may be psychosocially affected.
METHODS:  Parents of children with IA and parents in two comparison groups rated their children using a study-specific questionnaire and the Competence Scales in the Child Behavior Checklist (CBCL). Teachers rated Academic and Adaptive Functioning Scales in the Teacher's Report Form (TRF).
FINDINGS:  School items were rated favorably by the fathers of children with IA, and mothers reported less expression of their children's will. Children with IA were socially competent according to CBCL, although they received lower ratings on the TRF.
CONCLUSIONS:  Psychosocial issues seem to be challenging for children with IA, and this needs attention in care management.     

How a family is affected when a child is born with anorectal malformation. Interviews with three patients and their parents

Increased knowledge about families with a malformed child affects nursing practice. This study illuminates the experiences and psychosocial situation of 3 patients with imperforate anus and their parents. A qualitative method has been used to analyze the data. We found that the parents' experiences of suffering were overwhelming and that the 3 patients had been depressed during periods. The patients were not as open as their parents; we need to devise better tools to explore and understand children's experiences. The children and their parents need special care and an opportunity to express their anxieties.     

Using focus groups to explore the views of parents whose children are in hospital

Parents of children in hospital were invited to attend focus group discussions to give their views on: the experience of attending hospital with their children; information provision; facilities; and relationships with staff. The aim of the study was to inform an action plan to identify good practice and improve aspects of service delivery identified as of concern to parents. Themes identified from recorded discussions of 15 parents in four sessions were categorised as: They should be listening to parents; Stress of staying with their child; Feeling safe; Waiting; Parents as partners in care. Actions were planned to address physical aspects of care, such as provision of parent information, and staff to care for parents waiting with their child. Cultural aspects of care were addressed, as well as the invisible aspects of caring for children and their parents including attitudes and communication. The research indicates that parents appreciate the opportunity to tell their story and supports the idea of holding focus groups in the future.     

Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: evidence to guide the development of a palliative care service

OBJECTIVE: To obtain feedback from families of children receiving palliative and supportive care about their care needs in hospital and in community settings. DESIGN: A two-phase combined quantitative and qualitative study. SETTING: Western Australia. PARTICIPANTS: 134 parents and 20 service providers. RESULTS: Analysis indicated the concept of palliative care is poorly understood by health professionals and by parents. Many families are affected emotionally, financially and physically by the burden of caring for children with life threatening or chronic conditions requiring complex care at home. Parents indicated the need for clear and honest information about their child's condition and prognosis throughout the trajectory of illness and perceived this had been lacking. Families required financial and practical assistance with providing care from their children at home. Parents also wanted more practical resources and information to assist with the management of their child's nutrition and pain, as well as support for their other children. The level of respite (in home and residential) was perceived to be insufficient and inequitable. Parents also required access to, and advice from, multidisciplinary health professionals when caring for their child at home. There was a perceived lack of coordination between community services and the hospital. CONCLUSION: Education of health professionals and parents regarding the concepts and introduction of palliative and supportive care is required. Care for children and their families should be coordinated by a multidisciplinary team in consultation with children and their families, and linked and integrated with the treating hospital in collaboration with community services. More inclusive criteria are required for community services including practical aids and respite care.     

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.     

Pediatric brain tumor patients: their parents' perceptions of the hospital experience.

Studies have shown that admission to the hospital of a child can induce feelings of fear and helplessness in parents, challenging usual patterns of coping and parenting competence. Stress has been associated with parents' need to establish effective communication with staff and their need for information, ready access to their children, and participation in decision making relating to their child's care. This study of coping and adjustment was undertaken with the parents, including mothers and fathers, of children under 18 years of age diagnosed with a brain tumor, presenting at Royal Children's Hospital, Melbourne, between 2001 and 2002 (N=53). It was a prospective study using repeated measures over time. Participants in the study were involved in a questionnaire interview at 4 different points: at the time of diagnosis, 6 months postdiagnosis, 1 year postdiagnosis, and 2 years postdiagnosis, in which they were asked, among other things, about their experience of the hospital. The point of diagnosis was marked by a high level of dependence, with parents coping with rapid decision making and shock, and the surrender of care of their child. Parents identified high levels of information need but noted that they were often too stressed to take in information early on, and that this information need persisted up to the 2-year postdiagnosis point. More parents expressed dissatisfaction with the hospital and particularly with their interactions with the health care team at the 6-month post-diagnosis period, reflecting a possible reduction in attention given to families once they had settled into the treatment routine and the crisis of diagnosis had passed.     

Nurses as moral practitioners encountering parents in neonatal intensive care units

Historically, the care of hospitalized children has evolved from being performed in isolation from parents to a situation where the parents and the child are regarded as a unit, and parents and nurses as equal partners in the child's care. Parents are totally dependent on professionals' knowledge and expertise, while nurses are dependent on the children's emotional connection with their parents in order to provide optimal care. Even when interdependency exists, nurses as professionals hold the power to decide whether and to what extent parents should be involved in their child's care. This article focuses on nurses' responsibility to act ethically and reflectively in a collaborative partnership with parents. To illuminate the issue of nurses as moral practitioners, we present an observation of contemporary child care, and discuss it from the perspective of the Danish moral philosopher KE L?gstrup and his book The ethical demand.     

Parental perspectives on end-of-life care in the pediatric intensive care unit

OBJECTIVE: To identify priorities for quality end-of-life care from the parents' perspective. DESIGN: Anonymous, self-administered questionnaire. SETTING: Three pediatric intensive care units in Boston. PARTICIPANTS: Parents of children who had died after withdrawal of life support. MEASUREMENT AND MAIN RESULTS: Parents' views of the adequacy of pain management, decision making, and social support during and after the death of their child were measured with the Parental Perspectives Questionnaire. Of 96 eligible households, 56 (58%) responded. In 90% of cases, physicians initiated discussion of withdrawal of life support, although nearly half of parents had considered it independently. Among decision-making factors, parents rated the quality of life, likelihood of improvement, and perception of their child's pain as most important. Twenty percent of parents disagreed that their children were comfortable in their final days. Fifty-five percent of parents felt that they had little to no control during their child's final days, and nearly a quarter reported that, if able, they would have made decisions differently. There were significant differences (p < .001) between the involvement of family, friends, and staff members at the time of death and greater agreement (p < .01) about the decision to withdraw support between parents and staff members than with other family members. CONCLUSIONS: Parents place the highest priorities on quality of life, likelihood of improvement, and perception of their child's pain when considering withdrawal of life support. Parents make such decisions and garner psychosocial support in the context of a social network that changes over time and includes healthcare professionals, family, and friends.     

Pain in Children with Down Syndrome: Assessment and Intervention by Parents

The aims of this study were: 1) to describe how parents assess pain in their child with Down syndrome; and 2) to examine the relationship between pain assessment and decisions by parents to intervene to relieve pain in the child. Twelve parents of school-age children with Down syndrome (ages 6-12 years) were interviewed. Data analysis followed Spradley's Developmental Research Sequence (1979). This included domain analysis, taxonomic analysis, componential analysis, and theme development. Four themes emerged from the data analysis. Theme 1: Being sensitive to verbal and behavioral attributes of pain in the child. Parents reported that they assessed pain in their child with Down syndrome through the child's use of words to express pain, pointing or showing pain location, crying, changes in usual activities, and seeking closeness to the parent. Theme 2: Recognizing emotional and social responses to pain. Parents reported that emotional responses (e.g., anger, fear, frustration, acting out) were part of the pain expressions of their child with Down syndrome. Theme 3: Identifying differences in pain expressions between child and siblings. Parents used strategies to assess pain based on their beliefs that the child was less verbal, slower to complain, and less bothered by pain than siblings. Strategies included questioning the child to elicit self-reporting of pain and observing the child's behaviors. Theme 4: Making decisions to intervene. Parents reported that actions to relieve pain in their child with Down syndrome included more psychologic measures than physical measures, but otherwise no differences were noted in the actions taken for the child and the child's siblings.     

Symptom care flowcharts: a case study

Parents who have a child with a life-limiting condition face the painful prospect of seeing their child's health deteriorate and of becoming involved on a practical level with increasingly complex care. An example of a child with a rare genetic disorder requiring palliative care is used to illustrate how one aspect of the support needs of parents can be met through the use of therapeutic flow charts. The case study shows how a symptom management flowchart was developed to help one family feel more confident in caring for their dying child. It enabled them to focus less on the illness and more on spending quality time as a family. The development of symptom care flowcharts enabled the professional team and parents to think through problems before they arose and to make joint decisions. They boosted the confidence of family and carers by providing them with clear information and advice. Flowcharts of this kind can help support parents and carers in ongoing situations where multiple carers are involved and the child's care needs change over time.     

Parent's involvement in decisions when their child is admitted to hospital with suspected shunt malfunction: study protocol

Title.  Parent's involvement in decisions when their child is admitted to hospital with suspected shunt malfunction: study protocol.
Aim.  This paper outlines the protocol for a study aimed at exploring parent's involvement during professional–parent interactions and decisions about their child's care in the context of suspected shunt malfunction.
Background.  Hydrocephalus is a long-term condition treated primarily by the insertion of a shunt that diverts fluid from the brain to another body compartment. Shunts frequently malfunction, and parents of children with shunted hydrocephalus are responsible for recognizing and responding to shunt complications. Parents feel that interactions with professionals when they seek healthcare advice for their child do always not encourage active participation in care decisions.
Methods.  The study design is based on qualitative methodologies: a combination of conversation analysis applied to consultation recordings of professional–parent interactions when a child is admitted to hospital with suspected shunt malfunction, and semi-structured follow-up interviews with the same participants within 2 weeks of the consultation.
Participants.  This is a prospective study and participants will be purposefully selected. Parents of children who have been admitted to hospital with suspected shunt malfunction and healthcare professionals responsible for the initial assessment of the child will be invited to participate.
Discussion.  The study will identify how decisions about a child's care are negotiated between parents and healthcare professionals at key stages of the care pathway. In addition, examining interactions between healthcare professionals and parents may identify approaches that support or hinder parents in contributing to the decision-making processes when they seek advice from healthcare professionals.