Families of Children with Serious Emotional Disorder: Maternal Reports on the Decision and Impact of Their Child's Placement in Residential Treatment

Findings are reported regarding maternal experiences of their seriously emotionally disordered child both prior to and following a stay in a residential children's mental health treatment facility. Prior to placement, these parents had exhausted all nonresidential forms of intervention and, increasingly, became concerned not only for their identified child's welfare, but also for that of themselves and other siblings in the home. Regardless of whether their child's stay in residential treatment yielded positive or negative treatment outcomes, these parents unilaterally viewed the intensive short-term treatment of their child as an extremely valuable and necessary service. Parental recommendations for improvement in residential services include a reduced waitlist period, availability of services to children at a younger age, more parental education regarding effective child management strategies, and increased support for caregivers. The results are discussed as they relate to policy and practice for residential treatment providers.     

Parents of adult children with long-term mental disorder: Their experiences of the mental health professionals' approach and feelings of alienation – A cross sectional study

The aim was to describe how parents of adult children suffering from long-term mental disorder experience the mental health professionals' approach and any feelings of alienation regarding the provision of care. A further aim was to investigate any differences according to the parents' gender or the child's age. 93 mothers and 37 fathers participated. A majority experienced the mental health professionals' approach toward them as being negative and they felt alienated from the professional care. Regardless of the age of the children, parents have a considerable need for a positive approach from the professionals that can enable them to choose how they should act and what they should do, in order to help and support their adult child.     

Evaluation of a school re-entry nursing intervention for children with cancer

A retrospective qualitative design was used to identify and compare the concerns parents, teachers, and children have regarding school re-entry after a cancer diagnosis and to describe the impact of a school re-entry program on parents', teachers', and children's concerns. Audiotaped, semistructured interviews were obtained from a convenience sample of 10 children with cancer (ages 5 to 13 years), 10 mothers, and nine teachers. All participants were positive about the school re-entry nursing intervention, which is described. Results of content analyses indicate that before the intervention, mothers were concerned about their child's safety and peer teasing; teachers were concerned about their own knowledge and peers' adjustment, and children were concerned with keeping up with school activities. After the intervention, mothers were less concerned about peer teasing but continued to be worried about their child's safety in the school setting and began to have concerns about academic progress and physical stamina; teachers reported increased concerns for the child's safety and academic progress, and a desire to return to normal routines in the classroom; and the children continued to have concerns with maintaining academic and physical progress. Clinical and research implications are discussed.     

Bourdieu at the bedside: briefing parents in a pediatric hospital

The philosophy of family‐centered care (FCC) promotes partnerships between families and staff to plan, deliver, and evaluate services for children and has been officially adopted by a majority of pediatric hospitals throughout North America. However, studies indicated that many parents have continued to be dissatisfied with their decision‐making roles in their child's care. This is particularly salient for parents of children with chronic ongoing complex health problems. These children are dependent upon medical technology and require frequent hospitalizations during which parents must contribute to difficult decisions regarding their child's care. Given this clinical issue, an alternative theoretical perspective was explored to redress this problem. Pierre Bourdieu's theoretical concepts of field, capital, and habitus were used to analyze the hierarchical relationships in pediatric acute care hospitals and to design a briefing intervention aimed at improving parents' satisfaction with decision making in that health care setting.     

Parents' perceptions of the use of medication with children who are autistic

We investigated parents' perceptions of the use of medication with their children who have been diagnosed with PDD/autism. Seven children referred to an outpatient behavior management clinic for children with developmental disabilities and who were currently receiving medication for behavor problems were included in the study. Perceptions were measured using a 15-item likert-type rating scale addressing general changes in the child's behavioral and physical symptomatology, parent's perceived input into pharmacological treatment decisions, and other issues pertaining to the use of medication with their child. The results of this study indicate that the parents generally felt comfortable with the concept of using medication as a treatment intervention with their children. However, these parents also held generally unfavorable attitudes regarding the effectiveness of pharmacological treatment for their children's behavior problems.     

Catastrophizing about their children's pain is related to higher parent–child congruency in pain ratings: An experimental investigation

Little is known about the variables that account for why parents underestimate the pain of their child. In the present experiment, the joint impact of parental catastrophizing about their child's pain and children's facial pain expressions was examined upon pain estimates of their child undergoing a pressure pain test. In line with previous research, parents underestimated their children's pain. Interestingly, it was found that pain was estimated as higher when the child showed more facial pain expressions and when parents catastrophized more about their child's pain. An intriguing finding was that catastrophizing about their child's pain was related to less parent–child incongruence in pain ratings. The discussion addresses the possible functions of catastrophizing of parents about their children's pain, and delineates avenues for future research.     

Parental views from rural Cambodia on disability causation and change

Purpose.?This study explored the beliefs of Cambodian parents of children with cerebral palsy regarding disability causation and their perceptions of the effectiveness of interventions in bringing about change in their child.

Results.?Beliefs around disability causation were mixed, with equal numbers of participants attributing their child's disability to biomedical causes as to traditional causes incorporating elements of Theravada Buddhism, animism and Brahmanism. While many participants had initially sought traditional interventions for their child, few found them to be effective and most had subsequently utilised medical and rehabilitation services. Parents whose children were moderately or severely impaired perceived both traditional interventions and rehabilitation to be less effective than parents of children with mild impairments. Participants generally judged the effectiveness of interventions based on functional changes in their child.

Conclusions.?The complexity of Khmer belief systems was reflected in the range of participants' perceptions of the cause of their child's disability, yet beliefs around disability causation did not appear to have determined their care-seeking behaviour or their perceptions of effectiveness of interventions.     

PARENTING AND CHILDHOOD BEHAVIOR PROBLEMS: MOTHERS' AND FATHERS' VOICES

Through thematic analysis of interviews, we explored parents' perceptions of their child's behaviors and their own parenting. A purposive sample of four mothers and four fathers who reported behavior problems for their 7½ year-old-child was selected from a larger study. Parents appraised their child positively despite episodic behavior problems, and described parenting in the context of financial difficulties, marital conflict, chronic illness, lack of support for parenting, and abuse in the parent's family of origin. Data suggest a need for timely mental health services to assist parents with managing their child's behaviors within the context of the family's situation.     

Hope and Siege: The Experiences of Parents Whose Children Were Placed in Residential Care

This qualitative study focused on research into the impact on parents of children's out-of-home placement. Twelve couples (24 parents) were interviewed. Three major themes emerged: (a) parents' perception of out-of-home placement as necessary because of children's destructive behavior and parents' victimhood; (b) parents' acknowledgment of positive changes in the child and the family, their pain surrounding the child's pressurizing to return home and fear of regression if this should come about; (c) guilt as a major emotion that impacts their couple relationship. The study results are evaluated in the context of research on parents' reactions to children's removal from home.     

Parental satisfaction,involvement, and presence after pediatric intensive care unit admission

Purpose

To describe satisfaction, involvement, presence, and preferences of parents following their child's admission to an intensive care unit (ICU).

Methods

A survey, administered 1 month after their child's ICU admission, described perceptions of parental satisfaction with their interaction with healthcare providers, their presence during resuscitation, involvement in treatment decision-making, and preferences if events were to be re-enacted.

Results

One hundred three parents of 91 patients were enrolled; 64 primary parents (70%) completed the survey at 1 month. The mean (SD) satisfaction rating was 87.6 (± 14.8) and involvement rating was 70.2 (± 34.4) on a scale from 0 (not satisfied/involved) to 100 (completely satisfied/involved). There were no differences in satisfaction (P = .46), involvement (P = .69) and change in preferences (P = .97) between parents who were present and not present. After adjusting for child's baseline illness, receipt of more ICU therapies was associated with worse parental satisfaction (P = .03). Twenty-four (38%) parents reported that if events were repeated, they would have changed their preferences.

Conclusions

Overall, parental satisfaction ratings were high, lower in parents of children receiving more ICU therapies, and not associated with presence during resuscitation. These data contrast the American Heart Association's recommendation and suggestion of benefit from parental presence during periods of intensive therapies.     

Distraction for children of different ages who undergo repeated needle sticks

A distraction intervention for pain management and behavioral distress was implemented for six children with chronic illnesses and their parents as the children underwent repeated needle sticks. The children ranged in age from two to eight years. Several different cognitive distractors were used for the children based on their respective developmental levels. The needle stick procedures during which treatment was implemented included intramuscular injections, implanted port accesses, and intravenous placements. Nine sessions of distraction were provided in which a therapist taught parents to coach their children to use distraction techniques. Dependent measures included the child's behavioral distress and heart rate, parent ratings of the child's fear before the procedure, parent self-ratings of feeling upset during the procedure, and nurse ratings of the child's cooperation. Reductions in child behavioral distress during the distraction treatment program were observed in five out of the six cases. Concomitant improvements in parental reports of child distress, nurse estimates of child cooperation, and parents' self-report of feeling upset during the medical procedures also were found. Follow-up data were available for one of the successfully treated children. His improvements were maintained for both intramuscular injections and portacatheter accesses over 16 weeks without therapist involvement. [copy ] 2002 by Association of Pediatric Oncology Nurses     

“It's not everyday that parents get a chance to talk like this”: Exploring parents' perceptions and expectations of speech-language pathology services for children with intellectual disability

Tailoring the delivery of disability services to the preferences and requirements of service users allows for more effective partnerships. The aim of this research was to explore parents' perceptions and the expectations of their child's speech-language pathology (SLP) within an intellectual disability service. Parents of school-aged children with intellectual disability who received a SLP service in Ireland participated in the research: 17 parents participated in focus groups and 103 parents answered questionnaires. The core themes from the focus groups, which subsequently informed the questionnaire design, were: experience of the SLP service, communication difficulties, expectations of the SLP service, and future developments. The key questionnaire results indicated that parents viewed their SLP as the “expert” and viewed school-based and clinic-based services differently. Parents were more likely to believe that their child would always need therapy if they received a school-based service. Whereas, parents were more likely to think that their child's speech was improving as they got older and were more likely to be aware of therapy activities if therapy was clinic-based. The findings have implications for the delivery of SLP services suggesting that clarification of parents' roles and expectations are required.     

Parents’ Perceptions of the Impact of Information at a Voiding Cystourethrogram of Their Child: An Example of Person-Centered Care in Radiography

Voiding cystourethrogram (VCUG) is a common pediatric invasive diagnostic imaging examination to assess the urinary tract. The examination is associated with a high level of distress for both the child and the parents. Parents' ability to manage their child's situation depends, among other things, on the information they receive from the health care provider. The aim of the study was to explore the impact of information at a VCUG of a child as perceived by the parent. Phenomenography was used for the study design and analysis. A face-to-face semistructured interview with open-ended questions was conducted with 12 parents after their child's VCUG. Two categories of parents' perception of the impact of information emerged: keeping the child in focus and establishing a relationship. When receiving information before and during the VCUG, the parents perceived that they could be present for and support the child and make decisions in relation to the child's needs. The parents perceived that the radiology nurse had the expertise to provide information in a professional manner, which established a relationship between the parties. The results revealed that by accepting, questioning, and understanding VCUG health care information, the parents were able to be attentive to their child and were an integral part of person-centered care. The radiology nurse is pivotal in promoting person-centered care by tailoring VCUG health care information to enable shared decision-making and establish a relationship with parents in the best interest of the child during the examination.     

Concerns of Parents With Children Receiving Home-Based Pediatric Palliative Care

ContextCaring for a child who will die from a life-limiting illness is one of the most difficult experiences a parent may face. Pediatric palliative care (PPC) has grown as a specialty service to address the unique needs of children and families with serious illness. However, gaps remain between the needs of families in PPC and the support received.ObjectivesThe objective of this study was to explore the concerns of parents who have a child in home-based PPC.MethodsSemistructured interviews were conducted with 25 mothers and 10 fathers from 25 families shortly after their child's referral to home-based PPC. Children (57% male, M_age = 10.5 years, SD = 3.95, range = 4–18 years) had a range of diagnoses. Data were analyzed using inductive content analysis.ResultsParents' concerns clustered into four main themes: 1) ensuring that their child's remaining days were spent living well physically, emotionally, and socially; 2) uncertainty regarding their child's diagnosis, prognosis, and treatments; 3) their child's death (e.g., the process of dying and when it will occur); and 4) the family, including the impact of the child's illness and death on siblings and wanting to cherish as much time together with family as possible.ConclusionParents of children receiving home-based PPC expressed concerns across a range of domains, both about their seriously ill child and the broader family. These results highlight salient worries among parents of children in PPC and point to critical areas for intervention for seriously ill children and the broader family.     

Negotiation of parental roles within family-centred care: a review of the research

Aims and objectives. To review research published in the past 15 years about how children's nurses’ negotiate with parents in relation to family‐centred care. Background. Family‐centred care is a basic tenet of children's nursing and requires a process of negotiation between health professionals and the family, which results in shared decision‐making about what the child's care will be and who will provide this. The literature highlights inconsistencies in the degree to which nurses are willing to negotiate with parents and allow them to participate in decisions regarding care of their child. There is need to explore further the extent to which nurses communicate and negotiate shared care with children and their parents. Conclusions. Three themes emerged from this review of the literature relating to whether role negotiation occurred in practice, parental expectations of participation in their child's care and issues relating to power and control. Parents wanted to be involved in their child's care but found that nurses’ lack of communication and limited negotiation meant that this did not always occur. Nurses appeared to have clear ideas about what nursing care parents could be involved with and did not routinely negotiate with parents in this context. Relevance to clinical practice. For family‐centred care to be a reality nurses need to negotiate and communicate with children and their families effectively. Parents need to be able to negotiate with health staff what this participation will involve and to negotiate new roles for themselves in sharing care of their sick child. Parents should be involved in the decision‐making process. However, research suggests that a lack of effective communication, professional expectations and issues of power and control often inhibit open and mutual negotiation between families and nurses.     

U SE OF E MERGENCY M EDICAL S ERVICES BY C HILDREN WITH S PECIAL H EALTH C ARE N EEDS

Objective. This study describes emergency medical services (EMS) responses for children with special health care needs (CSHCN) in an urban area over a one-year period. Methods. A prospective surveillance system was established to identify EMS responses for children, 21 years of age or younger, with a congenital or acquired condition or a chronic physical or mental illness. Responses related to the special health care needs of the child were compared with unrelated responses. Results. During a one-year period, 924 responses were identified. Fewer than half of the responses were related to the child's special health care need. Younger children were significantly more likely to have a response related to their special needs than older children. Among related responses, seizure disorder was the most common diagnosis, while asthma was more common for unrelated responses. Almost 58% of the responses resulted in transport of the child to a hospital. Conclusions. Emergency medical services responses related to a child's special health care needs differ from unrelated responses. The most common special health care needs of children did not require treatment beyond the prehospital care provider's usual standard of care. These results are relevant for communities providing EMS services for CSHCN.