A descriptive study of the extent to which self-perceived needs of parents are met in paediatric units in Iceland

The purpose of this study was to identify the extent to which parents of 2-12-year-old hospitalized children perceive their needs to be met in paediatric units, what variables influence parents' perception, and whether parents need help from the hospital to meet their needs. Parents perceived that most of their needs were met fully or to some extent. The need to be able to stay with the child 24 h a day was perceived as fully met by all parents. Needs perceived as important but poorly met were as follows: written information about the child's health status, information about financial assistance and follow-up after discharge. Independent variables identified as being related to the extent to which individual needs were met were as follows: parents' age (p < or = 0.05), distance between home and hospital (p < or = 0.05), parents' education (p < or = 0.05), length of hospital stay (p < or = 0.01) and severity of child's illness (p < or = 0.01). Most parents perceived that they needed help from the hospital to meet their needs. These findings call for identification of effective interventions to meet parents' needs.     

Impact of chronic illness in children on parental living conditions. A population-based study in a Swedish primary care district.

In a geographically defined child population aged 0-15, every twelfth child suffered from chronic illness. Their parents and randomly selected control children's parents were asked about their living conditions using questionnaires. Non-responders (30%) had the same sociodemographic profile as responders. The socioeconomic level in index families (n = 95) was lower than in control families (n = 166). Both parents worked fewer hours in index than in control families. Index mothers had more health problems and sick days than control mothers. The parents' social relations were most hampered by having children with allergic disorders or mental retardation. Despite reduced hours, more absence from work to care for sick children, and reduced leisure activities, two thirds of the parents of moderately/severely disabled children found it difficult to cater adequately to the needs of their child. A family approach is recommended to provide comprehensive care of children with chronic illness, in which both specialized and primary care are needed.     

Children with a long-term illness: parents' experiences of care

A diagnosis of a long-term illness in a child will bring on a major upheaval in the lives of the whole family involved and leads to a long-standing relationship with health care personnel. The purpose of this study was to describe parents' experiences with their child's illness and treatment and with their relationships with health professionals during the process of learning to care for their child. Data were collected by conducting open-ended interviews with parents (N = 11) whose child had been diagnosed with a physical long-term illness at least 1 year previously and were analyzed using qualitative content analysis. Parents' needs for information and support varied and consisted of different components in different phases of the process. During the diagnostic phase, parents were recipients of information; it was important for them to receive consistent empathetically provided information. In the next phase, parents, having gained experience of day-to-day home care, engaged in a change toward a two-way flow of information with the professionals; mutual trust was essential for the exchange of information needed for a child's proper care. Without a permanent relationship with health professionals, parents showed lack of trust in professionals' knowledge of their child's condition and care. Professionals' lack of trust in parents' expertise in their child's care was also problematic. Health professionals should lay the groundwork for a partnership in which both parties acknowledge each other's competencies; parents' needs ought to be continuously reassessed. A permanent relationship between families and health care personnel is required to achieve this.     

Parental views on participation in their child's pain relief measures and recommendations to health care providers

The purpose of this study was to describe parental views on the factors influencing participation in their 8- to 12-year-old hospitalized child's surgical pain relief measures, and the recommendations to health care providers concerning alleviation of their child's pain. The data were collected by a questionnaire completed by parents (N = 192) whose child was hospitalized in one of the pediatric surgical wards in the five university hospitals of Finland. Results revealed that most of the parents (98%) agreed to having adequate opportunities to participate in their child's care according to their personal preferences; however, only 23% of the parents totally agreed that they had a clearly defined role in their child's pain relief measures. Feelings such as concern, fear, helplessness, anxiety, and depression were commonly experienced by the parents during their child's hospitalization. Most of the parents' recommendations concerned the topic of providing information. The findings of this study have implications for nursing practice.     

Parent-held child health records do not improve care: a randomized controlled trial in Norway

OBJECTIVE: To study the effects of a parent-held child health record (PHCHR) that was created by the Norwegian Board of Health with the purpose of introducing this to the whole country. DESIGN: Randomized controlled trial. SETTING: Maternal and child health centres in 10 municipalities in Norway. SUBJECTS: Parents of 309 children attending the National Preschool Health Surveillance Programme. INTERVENTION: Half of the parents were given a PHCHR and short instructions on how it was expected to be used. MAIN OUTCOME MEASURES: Parent-professional collaboration, healthcare utilization, and parents' knowledge about child health matters and illness. RESULTS: Some 73% of the intervention group used the PHCHR regularly when visiting the health centres, 79% reported that their own writing in the record was helpful, and 92% favoured the PHCHR being permanently adopted. Use of the record did not influence the utilization of healthcare services, parents' knowledge of their child's health, or parents' satisfaction with information or communication with professionals. CONCLUSIONS: The PHCHR was well accepted by parents and professionals but it had no effects on collaboration, healthcare utilization, or other measures that could justify the costs of introducing the record into common use. Therefore, the introduction of a parent-held child health record in Norway is being postponed.     

Parents' roles in using non-pharmacological methods in their child's postoperative pain alleviation

Increasingly nowadays, parents participate more fully in the care of their hospitalized children. The purpose of this study was to describe parents' utilization of selected non-pharmacological methods in relieving their hospitalized child's (aged 8-12 years) postoperative pain, and factors related to this function. Data were collected by a questionnaire survey completed by parents (n=192) with a child hospitalized on a paediatric surgical ward in the five university hospitals of Finland. The response rate was 90%. Results indicated that non-pharmacological methods, such as emotional support and helping with daily activities, were well utilized whereas cognitive-behavioural and physical methods were less frequently used strategies. Certain background factors specific to the parents and their hospitalized children were significantly related to the non-pharmacological methods used by the parents. The hospitalized child's gender, the time of the surgical procedure, and the parents' assessments of their child's pain intensity, were especially significantly related to many of these strategies. The findings of this study could be used in clinical practice to improve guidance provided to parents regarding interventions for children's pain relief.     

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 7(1/2) 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.     

Supportive and palliative care needs of families of children who die from cancer: an Australian study

OBJECTIVE: To obtain feedback from parents of children who died from cancer about their understanding of palliative care, their experiences of palliative and supportive care received during their child's illness, and their palliative and supportive care needs. DESIGN: A qualitative study with semi-structured interviews. PARTICIPANTS: 24 parents from Perth (n = 10), Melbourne (n = 5), Brisbane (n = 5) and Sydney (n = 4). Setting: Five Australian tertiary paediatric oncology centres. Results Parents whose children died from cancer live within a context of chronic uncertainty and apprehension. Parents construed palliative care negatively as an independent process at the end of their children's lives rather than as a component of a wider and continuous process where children and their families are offered both curative and palliative care throughout the cancer trajectory. The concept of palliative care was perceived to be misunderstood by key health professionals involved in the care of the child and family. The importance and therapeutic value of authentic and honest relationships between health professionals and parents, and between health professionals and children were highlighted as a critical aspect of care. Also highlighted was the need to include children and adolescents in decision making, and for the delivery of compassionate end-of-life care that is sensitive to the developmental needs of the children, their parents and siblings. CONCLUSIONS: There is a need for health professionals to better understand the concept of palliative care, and factors that contribute to honest, open, authentic and therapeutic relationships of those concerned in the care of the dying child. This will facilitate a better understanding by both parents and their children with cancer, and acceptance of the integration of palliative and supportive care in routine cancer care.     

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.     

Children's participation in vaccine research: parents' views

AIM: Vaccine studies that evaluate the persistence of protection following immunisation require subjects to continue participation in a research protocol over many years. As parents' attitudes and opinions may change over time, and with experience of research, it is important to consider the factors influencing parents' decision-making about their child's continued participation in such prolonged vaccine studies. METHOD: Parental views about participation of their child in a one-year follow-up vaccine study were explored by means of a self-administered questionnaire. Of the 254 eligible parents, 187 took part (74 per cent). RESULTS: Parents who provided consent were more likely to agree that having a home visit to take blood was very helpful (p=0.005) and that information obtained during the earlier part of the study influenced their decision to take part in a follow-up study (p<0.0001). Parents who did not consent to their child's participation were more likely to report the presence of personal reasons as a variable influencing their decision (p<0.0001). CONCLUSIONS: The relationship between study staff and parents is the cornerstone for success in performing studies involving vaccines and children. Provision of clear study information (oral and written) and offering the convenience of home visits are important in retaining participants in paediatric vaccine trials.     

Touchpoints: changing the face of pediatric nurse practitioner education

Touchpoints is an interdisciplinary relational model of healthcare primarily used with parents and young children. The underlying premise of the Touchpoints approach is to support the parent/child relationship during the health encounter by enhancing parents' efforts to optimize their child's physical and psychological development. Nurse practitioners who use this approach in practice find they are able to connect quickly to the parents' most urgent concerns for their child. Our experience has been that a pediatric nurse practitioner program that uses Touchpoints as the underlying framework can assist students in achieving a holistic view of families by focusing the curriculum more directly on development and relationships. Students learn that building a relationship with parents, and joining them in the care of their child, produces an atmosphere in the health encounter of mutual respect and trust. Parents leave the encounter feeling satisfied their concern for their child has been heard and questions have been seriously discussed; students leave feeling competent and valued by their patients. Touchpoints provides a model for teaching and demonstrating the development of interpersonal relationships by using the language of the child's behavior.     

An Internet Discussion Board for Parents of Mentally Ill Young Children

PURPOSE: This paper reports parents' use of electronic bulletin board for social support during a pilot study of an Internet intervention. METHODS: Parents participated for a mean of 13.83 weeks. The convenience sample consisted of six parents. Data were from site access information and parents' postings. FINDINGS: Excluding one mother who checked frequently for messages, mothers have an average of 5.2 postings. Excluding this one mother, the postings/ accesses ratio was greater than 60%. Parents made postings in four categories of "child's illness" having 37 comments and 36 comments for "group maintenance". CONCLUSIONS: While the study findings cannot be generalized, these results suggest that parents will use electronic discussion boards.     

Disciplinary practices with children: parental sources of information,attitudes, and educational needs

Although parenting is one of the most important roles undertaken during an individual's lifetime, the amount of information and education that parents receive for this role is variable and often minimal. Parenting behaviors are influenced by a variety of factors and conditions such as knowledge levels, and parenting abilities vary with parents' own childhood experiences, value systems, education levels, and other life experiences. One ongoing parenting issue is the management of and appropriate response to child misbehavior. A review of the topics of discipline and physical punishment are discussed in this article in relation to definitions, practice, and outcomes. A study of parents' attitudes regarding physical punishment and their sources and needs for related parenting education are presented. Findings from this study (N = 170) indicate that parents receive parenting information from a variety of sources, most frequently through discussions with other parents, books on parenting, and their own experiences. The topics identified most frequently by respondents are age-appropriate disciplinary responses and expected child development and behaviors. These areas of information should be made available on a wide basis to parents of young children.     

Online solutions to support needs and preferences of parents of children with asthma and allergies

Many families of children with asthma and allergies experience support deficits and isolation. However, support interventions have not been designed to meet their needs. Consequently, parents' intervention preferences were elicited, and an online peer support group intervention was designed based on these preferences and piloted in the study described. In-depth interviews with 44 parents elicited preferences for support interventions for both children and parents. Many said they felt alone and wanted support from others in similar situations. Based on the parents' preferences for accessible online peer support groups, a pilot online intervention was designed and implemented. Parents received information and reassurance from other parents in peer support sessions. Parents appreciated the accessibility and anonymity of the online support group. This innovative online peer support intervention, informed by parents' preferences, could be adapted and tested in intervention trials and guide programs and practice for families affected by asthma, allergies, and other chronic conditions.     

Parents' views about infant pain in neonatal intensive care

OBJECTIVE: The purpose of this study was to describe parents' perceptions and feelings about their infant's pain experience and pain care in the neonatal intensive care unit. METHOD: Thematic content analysis was used to encode the qualitative information contained in parents' written comments on a questionnaire about their views on infant pain and pain care. The questionnaire was completed by 257 parents from 9 neonatal units in the United Kingdom (n = 196) and 2 neonatal units in the United States (n = 61). RESULTS: Parents' comments indicated that they saw medical procedures as the major source of their infant's pain, wanted more information, and generally desired more involvement in this aspect of their infant's care. Parents' comments indicated that their infant's pain affected them emotionally and that they worried about their future relationship with their infant. Parents also articulated specific ways in which health care professionals could assist them and their infants in coping with neonatal intensive care unit-related pain. DISCUSSION: The findings from this study expand knowledge about how parents understand and respond to the difficult situation in which their newborn infant is subjected to essential but painful procedures. The findings provide direction for research and clinical practice interventions aimed at: 1) helping parents to gain knowledge and correct their misperceptions; 2) engaging parents in meaningful dialog about their concerns and preferences for involvement; and 3) helping parents to develop effective coping strategies to reduce psychologic distress related to their infant's pain.     

Expectations and experiences of accessing and participating in services for childhood speech impairment

Speech impairment (speech sound disorder) is a high prevalence condition that responds well to early intervention provided by speech-language pathologists (SLPs). However, not all children in Australia are able to access necessary speech-language pathology services. The aim of this research was to investigate Australian parents' experiences of accessing and engaging in speech-language pathology services for their children with speech impairment. Two studies were conducted to achieve this aim. In Study 1, questionnaires were completed by 109 parents of pre-school children who had been identified with concerns about their speech. Only a third (n = 34, 31.2%) of the parents had previously accessed speech-language pathology services for assessment of their children's speech and just 29 of these (26.6% of the entire sample) reported their children had received intervention. Two thirds (n = 68, 62.4%) of the parents had not sought speech-language pathology services and half of these (n = 35, 32.1% of the entire sample) reported that "services were not needed". There was a small number of parents (n = 7, 6.4%) who had attempted to access services but had been unsuccessful. Parents identified teachers, family, friends, and doctors as important sources of information about their children's speech. In Study 2, interviews were conducted with 13 of the parents to discuss their experiences of speech impairment and service delivery in greater depth. Parents expected that others would make them aware of their child's speech impairment and that they should be able to access speech-language pathology services when required. Consequently, there is a need to raise awareness about speech impairment and speech-language pathology services to ensure appropriate identification, referral, and service provision for children at risk.     

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."