Parents' journey through treatment for their child's obesity: a qualitative study.

BACKGROUND: Treatment for childhood obesity is characterised by patient non-attendance and drop-out, and widespread failure to achieve weight maintenance. Qualitative methods may improve our understanding of patient perceptions and so improve treatment for childhood obesity. AIM: To provide insight into the perceptions of parents of obese children as they "journey" from pre-treatment to end of treatment. METHODS: We used purposive sampling and studied 17 parents of children (mean (SD) age 8.4 (2.1) years) attending 6-month outpatient treatments for obesity (BMI>98th percentile). Parent's perceptions were explored by in-depth interviews, analysed using Framework methods. RESULTS: Parents were characterised as being unaware of their child's weight, in denial or actively seeking treatment. Parents were consistently motivated to enter treatment due to perceived benefits to their child's self-esteem or quality of life, and weight outcomes appeared typically less important. During treatment parents felt there was a lack of support for lifestyle changes outside the clinic, and noted that members of the extended family often undermined or failed to support lifestyle changes. Parents generally felt that treatment should have continued beyond 6 months and that it had provided benefits to their child's well-being, self-esteem and quality of life, and this is what motivated many to remain engaged with treatment. DISCUSSION: This study may help inform future treatments for childhood obesity by providing insights into the aspects of treatment of greatest importance to parents. Future treatments may need to consider providing greater support for lifestyle changes within the extended family, and may need to focus more on psycho-social outcomes.     

Your child is dead]

To determine parents' views on how the death of their child should have been handled, a retrospective questionnaire survey was carried out among parents who had experienced the death of a child: 120 bereaved parents, all members of a charitable organisation of bereaved parents participated voluntarily in the study; 122 children's deaths were described; the largest single group was due to road traffic accidents, 16 were suicides, and eight were murders. Twice as many interviews were rated as sympathetically or reasonably handled than badly or offensively handled (68 vs 34). The interview ratings depended on the sensitivity and personal skills of the interviewers rather than on their previous contact or professional position; police were rated as more sympathetic than doctors and nurses. Of 109 respondents, 81 had seen their child's body, 44 of whom thought that sufficient time had been denied. Of the 28 parents who did not see the body, 17 subsequently stated their regret. In 82 parents, organ donation had not been discussed. Only 16 parents recorded any follow-up support from hospital staff and very few support at the time. The consistency of the responses suggests a serious need to revise the in-service training and education of the police and health professionals in their approach to informing of death; organ donation should be discussed sensitively and parents allowed time with their dead child with fewer restrictions.     

Difficult and unlikeable parents.

Children of parents who are perceived as difficult or unlikeable are at risk of receiving less good medical care. Therefore a postal questionnaire was sent to 100 hospital doctors dealing with children asking which features made them consider a parent to be difficult or unlikeable. Seventy eight responded. Most problems arose from parents who displayed aggression, disparagement of their child, unacknowledged anxiety, or fixed ideas about the medical condition and its management. Other unpopular parental features were poor compliance, failure to listen, and the attendance of more than one accompanying adult. Respondents graded 16 features in order of their detrimental effect on the child's care. A major factor was if the child had a condition for which the doctor could offer no treatment; less important was the fact that the child might have a condition not understood by the doctor. Parents originating from the Indian subcontinent posed additional problems, in particular the common unavailability of interpreters. Doctors of all grades understood why parents behaved in awkward ways, but lacked strategies for dealing with them. A similar survey of nurses and therapists produced a poor response (51% returns). Only the most senior acknowledged that some parents were difficult or unlikeable and that, as a consequence, the child's care might be affected. Nurses acknowledged difficulty with parents who were violent or who abused their children physically.     

Parents' perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer

BACKGROUND: In the present study, we investigated the situation of children who had succumbed to their malignancy in Germany as perceived by their parents. Specifically, we were interested in bereaved parents' perspective on five essential areas: 1) symptoms and quality of life, 2) characteristics of the child's death, 3) anticipation of their child's death and care delivery, 4) end-of-life decisions and 5) impact of the child's death on the parents and perceived social support by the health care team. MATERIALS AND METHODS: We contacted all existing departments for paediatric oncology in the German federal state of Nordrhein Westfalen and asked them to contact all parents for participation in our study who had lost their child to cancer in 1999 and 2000. Upon agreement, we interviewed the parents utilising a validated semi-structured interview on distressing symptoms and quality of life of their children during the end-of-life care period. RESULTS: Six of the 19 departments agreed to participate. Parents of 48 children (31 boys, 17 girls) were interviewed. The main distressing symptoms were fatigue, pain, loss of appetite, and dyspnoea according to the parents. While parents perceived pain and constipation to have been treated successfully, loss of appetite and anxiety were not treated effectively. 75% of the children died due to a progression of their malignancy. Of these, 50% obtained cancer-directed therapy at the end of life, which was negatively rated by the parents in hindsight. 48% of the children died at home even though 88% of the parents chose 'at home' as the most appropriate locale of death in hindsight. Parents anticipated their child's death on average 9 weeks prior to the child's death. 41% of the parents provided palliative home care for their child and the majority (88%) rated the quality of care as good or very good. 64% discussed end-of-life decisions with the health care team, 36% did not have a discussion. Parents were clearly affected by their child's death. However, 15% of the parents were not contacted by the health care team following the child's death. CONCLUSIONS: The present study demonstrated that psychological symptoms (e.g. anxiety) are frequent symptoms in the end-of-life care period and cause severe suffering in the children. Questions in terms of benefits and costs of cancer-directed therapy in the end-of-life care period need to be addressed in future prospective studies. Parents' perspective on their child's death and related end-of-life decisions highlighted the importance of communication between parents and the health care team. Future studies need to investigate potential barriers in the communication between parents and the team to optimise end-of-life decisions and hence, reduce parents' long-term distress. In line with the previous, the present data demonstrated that there is still a lack of routine contact from the health care team following the child's death despite existing guidelines. Research is therefore needed into the implementation of guidelines for routine contact into clinical practice following a child's death.     

Promoting safety of young children with guided participation processes.

The infant's complete dependence on others for protection and the young child's desire to explore the world puts them in harm's way without the caregiver's vigilance and commitment to practices that promote safety. Using a car seat, placing an infant in the supine position for sleep, and watching and monitoring a child's activities within the home are just a few of the safety practices required of a young child's caregiver. Safety information alone may not be adequate to develop a caregiver's competencies for safe practice. A process of clinician-caregiver co-participation to support competency development for current and future caregiving safety practice is described for clinicians who are in a position to support development of these competencies, including public health nurses and nurse practitioners.     

The life of parents with handicapped children

Based on personal experience and the results of a survey among 78 families, the author analyses the psychological, social and economical consequences of severe mental retardation for the parents of the sick child. The most important consequences are psychological and socio-economic: guilt feelings, social isolation and risk of parental separation. The disclosure of the child's handicap yields to various reactions: psychological shock at first, then denial of the handicap, depression, followed in some parents with acceptance and fear for the future of their child after their own death.     

The importance of parents' concerns about their child's development

Parents are often concerned about their child's development, but it is unknown whether concerns indicate actual developmental problems. Pilot studies within 96 families showed that parents' concerns about their children's development took the form of value judgments, could be classified into commonly accepted developmental domains, and related to performance on screening tests. In our study, 100 families seeking pediatric care were asked to list any concerns about their child's development while their children received developmental screening. Eighty percent of the children who failed screening had parents with concerns about articulation, language, fine-motor skills, or global development. Ninety-four percent of the children who passed screening had parents with no concerns or concerns in other developmental areas. The types of concerns parents raised did not vary significantly with level of education, experience in child rearing, or other demographic variables. These results suggest that parental concerns may be a helpful adjunct to standardized developmental screening.     

Use of the internet by parents of paediatric outpatients.

AIMS: (1) To establish how many parents of children seen in paediatric outpatient departments use the internet to find information about their child's medical condition. (2) To ascertain what information is sought and found, and what proportion of all parents had access to the internet at home or elsewhere. METHODS: Over a six week period in 2000, parents of children attending general paediatric outpatient clinics in the district general hospital in Bath and in the 10 associated community hospitals, were asked to complete a questionnaire survey. RESULTS: Of the 577 questionnaires distributed, 485 were returned, a response rate of 84%. A total of 332 (69%) families owned a computer and 248 (51%) had internet access; 107 (22%) had looked on the internet for information about the problem for which their child was being seen in clinic that day. Parents who knew their child's diagnosis were more likely to have used the internet than those who named their child's symptoms only. A health professional had suggested that parents seek information on the internet in 6% of cases. These parents were more likely to use the internet than parents to whom this had not been suggested (67% v 20%, p < 0.001). Eighty nine (84%) parents who had used the internet prior to this clinic appointment found it useful. Thirty six (34%) parents had discussed or were planning to discuss the information they had found with their doctors. CONCLUSION: A significant proportion of parents have access to the internet and use it to find information about their child's medical condition. The parents who discuss what they find with the clinic doctor are in the minority. Doctors should be prepared to ask parents about their information needs and discuss use of the internet.     

Decisions about life‐sustaining measures in children: in whose best interests?

As the community of physicians and nurses dedicated to the care of critically ill children has gained ever more well-developed skill sets, the decision to either continue or forego life-sustaining measures has become less time-sensitive. As a result, there is greater opportunity for careful consideration and discussion. The core principle in making decisions about whether to continue or forego life-sustaining measures is the best interests of the child. However, there are many clinical situations wherein factors other than the child's best interests may influence treatment decisions. The present report seeks to examine the notion that in the arena of paediatric critical care medicine, the decision-making process regarding life-sustaining measures may place insufficient priority upon the child's best interests. We examine actual, de-identified clinical situations, encountered in the critical care arena in two categories: (i) cases that challenge the imperative to act in the child's best interests, and (ii) cases that compromise the ability of parents and caregivers to use child-centred, best-interests approaches to decision-making. Clarity surrounding the implications of a clinical decision for the patient is essential. Decisions that are not focused squarely on the child's best interests may compromise the delivery of optimally ethical end-of-life care. CONCLUSION: The cases and analysis may benefit parents and caregivers as they struggle with the difficult ethical issues that accompany decisions to continue or forego life-sustaining measures in children.     

Emotional complications of adolescent grand mal epilepsy.

Adolescents who have grand mal epilepsy and their parents were interviewed, and the adolescents were evaluated neurologically. Better seizure control and less neurologic disability were unexpectedly associated with less open communication between the adolescents and their families and friends, and with a poorer self-image and poorer expectations for the future. These findings were unrelated to IQ or school performance. This outcome is consistent with other studies of invisible defects and stigmatization, and suggests that youngsters who have relatively mild defects involving social disability may be more troubled than those with more apparent defects, for which denial may be operative. An incidental finding in the study was that a question more predictive of overall family, social, and academic function than the neurologic findings was simply whether or not the youngster was attending the appropriate grade in school for his or her age.     

Parental perceptions in egg allergy: Does egg challenge make a difference?

The aim of the study was to determine the effect of an oral egg challenge in egg sensitized children on parental perceptions relating to their child's allergy. A questionnaire was completed by parents for 167 children attending a tertiary paediatric clinic with egg sensitization. The questionnaires included 10 questions concerning parental perceptions of their child's egg allergy. Parental perceptions of those children who had not had an egg challenge (n = 83) were compared with those whose children had a positive (n = 27) and those with a negative (n = 57) egg challenge. A significant difference (p = ≤0.02) was observed between challenge positive(CP) and challenge negative (CN) subjects in reported changes to lifestyle and the fact that more parents in the CN group expected little or no future inconvenience for the child. The responses of parents whose child had undergone an egg challenge differed significantly (p = ≤0.005) from those not challenged with a significant reduction in the following parameters; the effect on out-of-home care arrangements, the perception of being more severe as compared to other common childhood illnesses, whether they found egg allergy to be moderately or very stressful, whether their lifestyle was changed, the expectation of little or no future discomfort for the child and whether others treated the child differently. The performance of an egg challenge was associated with reduced adverse parental concerns. For 6/10 parameters, expectations concerning egg allergy in children who had been challenged were significantly better than those who had never been challenged irrespective of the challenge outcome. The greater certainty provided by the performance of a food challenge may be a positive outcome in both CP and CN children.     

Methodological considerations in the assessment of health-related quality of life in children

Health-related quality of life (HRQL) can be described as the psychological and social aspects of a patient's health, and as the patient's view of his or her condition and its treatment. Doctors, parents and children have different views of a child's HRQL. This is not because one has the right perception and the others are wrong, but because they see different aspects of the child's HRQL. Only the children themselves can provide a subjective perception of their HRQL. The practical and conceptual considerations required when assessing children's HRQL are discussed.     

Adult survivors of childhood cancer and their parents: experiences with survivorship and long-term follow-up

To compare the perspectives of adult childhood cancer survivors and their parents in terms of: (1) parental involvement in the survivor's healthcare, (2) thoughts and discussion about their own or their son's/daughter's childhood cancer, (3) concern about the survivor's current health status, and (4) perceived benefits of follow-up care. Forty-two adult survivors and their parents completed a semistructured audio-taped interview via the phone responding to a parallel set of questions. Thirty-eight percent of survivors reported that one of their parents attended the adult survivor clinic with them; in 41% of patient-parent dyads the parent expressed more concern than their child about the child's health status; 45% of the parents reported thinking about the cancer experience more often than their child. The results suggest that some parents continue to worry about their child's health status into adulthood, and in turn may choose to stay involved in their adult child's healthcare. Additional research is needed to understand the survivorship needs of the adult survivor and their family. Including parents in important healthcare decisions and discussions may be a consideration when caring for this unique population of patients.     

Quality of life following allogeneic stem cell transplantation, comparing parents' and children's perspective

There is insufficient knowledge about the quality of life (QoL) among children after allogeneic stem cell transplantation (SCT). We recently reported an overall, good self-assessed QoL and health in 52 children who were three yr or more beyond SCT. The focus of this paper is the QoL as assessed by their parents, of whom 42 participated in the study. Using Swedish child health questionnaire (SCHQ)-PF50, parents rated their children's QoL lower on both the psychosocial (p<0.001) and physical summary scales (p<0.001) than the normative group of parents of children without chronic disease. Although essentially following each other, parent scores tended to be lower than children's own SCHQ-CF87 scores, particularly in the domains 'role socially due to physical limitations' (p<0.01) and 'self-esteem' (p<0.05). In the 'bodily pain' domain, patients' and parents' low scores agreed. The child's condition had a greater impact on parents' emotional situation than in the norm population (p<0.001). The severity of the child's physician-rated late effects (p<0.05) or of self-assessed subjective symptoms (p<0.01-0.05) was associated with a lower parental rating of the child's QoL. High Lansky or Karnofsky scores corresponded, respectively, to higher psychosocial (p<0.05) and physical (p<0.05) summary scores. It is concluded that as children, parents, and clinicians do not necessarily adopt similar views of a child's illness and of its impact on the child's life, clarity with regard to who is responsible for assessing the child's QoL is crucial when interpreting pediatric QoL studies.     

Perceptions of quality health care among parents of children with bleeding disorders.

INTRODUCTION: This study examined how parents of children with bleeding disorders defined quality health care, their expectations for care at the clinic, and indicators of quality health care important to them. METHODS: Parents (N = 54) answered two open-ended questions and completed the Quality Health Care Questionnaire, which examined the importance of 33 indicators of quality care. RESULTS: The most important indicators of quality care to parents were being included in decisions about their child's care (M = 4.98), being cared for by nurses who are competent and up-to-date (M = 4.94), and being cared for by doctors who are competent and up-to-date (M = 4.94). DISCUSSION: The results of this study are consistent with earlier research involving other groups of consumers. Parents view quality care as being included in decisions about their child's care and having competent and caring providers with whom they can communicate. In contrast to earlier research, however, waiting time was the least important indicator of quality care.     

Parental reporting of smelly urine and urinary tract infection.

BACKGROUND: Parents often report that young children have "smelly urine" or a particular urinary odour. There is little evidence that these observations are relevant to the diagnosis of urinary tract infection (UTI). AIMS: To determine whether parental reporting of smelly urine is of any relevance to the diagnosis of UTI in children less than 6 years of age. METHODS: Parents whose children were having urine collected as part of their admission to a large district hospital were given a simple questionnaire to complete regarding the current smell of their child's urine. Parents were asked whether their child's urine smelled different from usual or had a particular smell. Microscopy and culture results of the child's urine were compared to their parent's questionnaire answers to see if there was a association between parental reporting of a different or particular urine smell and a diagnosis of UTI. RESULTS: One hundred and ten questionnaires and urine samples were obtained. Fifty two per cent of parents thought that their child's urine smelled different from usual or had a particular smell. Only 6.4% of children were diagnosed as having a UTI. There was no statistically significant association between parental reporting of abnormal urine smell and diagnosis of UTI. CONCLUSION: In determining whether a young child has a UTI, asking parents about urine smell is unlikely to be of benefit.     

What influences parents' decisions to limit or withdraw life support?

OBJECTIVE: Decisions to forgo life support from critically ill children are commonly faced by parents and physicians. Previous research regarding parents' perspectives on the decision-making process has been limited by retrospective methods and the use of closed-ended questionnaires. We prospectively identified and described parents' self-reported influences on decisions to forgo life support from their children. Deeper understanding of parents' views will allow physicians to focus end-of-life discussions on factors important to parents and help resolve conflicts. DESIGN: Prospective, qualitative pilot study. SETTING: Pediatric intensive care unit of a university-affiliated children's hospital. PARTICIPANTS: A total of 14 parents of ten children whose pediatric intensive care unit physician had made a recommendation to limit or withdraw life support. INTERVENTIONS:: In-depth, semistructured interviews were conducted with parents during their decision-making process. MEASUREMENTS AND MAIN RESULTS: Factors influencing the parents in this study in their decision to forgo life support included their previous experience with death and end-of-life decision making for others, their personal observations of their child's suffering, their perceptions of their child's will to survive, their need to protect and advocate for their child, and the family's financial resources and concerns regarding life-long care. Parents in this study expressed the desire to do what is best for their child but struggled with feelings of selfishness, guilt, and the need to avoid agony and sorrow. Physician recommendations, review of options, and joint formulation of a plan helped parents gain a sense of control over their situation. Parents of eight children agreed to forgo life support and parents of two did not. CONCLUSIONS: Prospective interviews with open-ended questions identified factors influencing parents' decision making not previously described in the critical care literature such as parents' past experiences with end-of-life decisions and their anticipated emotional adjustments and future resources. Inclusion of these factors into discussions is important to parents and may facilitate decisions regarding the limitation or withdrawal of life support.     

Morbidity following minor head trauma in children

Head trauma, the most common form of accidental injury among children, is a source of concern for parents and pediatricians. Parents worry about a child's loss of intellectual function. Pediatricians often see the well-documented sequelae of severe head trauma as a basis for parental instructions on observation of a child after minor head injury. A prospective study of 321 children, 6 months to 14 years of age, who had sustained minor head injury within the previous 24 hours was conducted in the emergency department of the Children's Hospital of Philadelphia. Parents of all children completed a ten-minute triage questionnaire and received discharge instructions after their child had received standard medical management. One month after the injury, a questionnaire was administered in a telephone interview to assess the child's physical health status, social or functional limitations, and behavior problems. Physical morbidity was rare, and headache, the most frequent complaint, occurred in only 7% of the children. However, parents reported substantial functional morbidity, and there were significantly more behavioral problems in the 2- to 14-year-old head trauma patients than reported for the standard normal population. Therefore, children who have sustained minor head trauma manifest substantial functional morbidity despite the rarity of physical sequelae. This functional morbidity probably reflects parental overreaction and possibly family dysfunction. It is recommended that pediatricians who have determined that a child's head injury is mild should focus parental education on the rarity of physical sequelae and the importance of the child's returning to a normal routine.     

MMR: marginalised, misrepresented and rejected? Autism: a focus group study.

OBJECTIVE: To explore how the measles, mumps, and rubella (MMR) vaccine controversy impacted on the lives of parents caring for children with autism. DESIGN: Qualitative focus group study. SETTING: United Kingdom. PATIENTS: A purposively selected sample of 38 parents took part in 10 focus group discussions between March 2003 and May 2005. RESULTS: Many parents felt that the MMR vaccine could be too potent for children who are susceptible to developing autism. Of the parents whose children received the MMR vaccine, many felt guilty that they may have caused or contributed to their child's autism. Some parents felt frustrated by health professionals' lack of understanding of the negative impact the MMR controversy has had on them. Some parents were anxious about subsequent MMR decision-making for their children. CONCLUSIONS: The controversy has had a negative impact on some parents of children with autism. This has implications for health professionals, who need to be particularly aware of the issues these parents face in future MMR decision-making for their affected child and younger siblings. It is anticipated that these findings will raise awareness among health professionals of the difficulties faced by such parents. More generally, there is a need to promote a greater awareness of the important role health visitors can play in parental decision-making and for research examining whether health professionals feel they receive sufficient training in communication skills. It is also essential that the latest scientific research findings are disseminated quickly to these parents and to those health professionals advising parents on matters of vaccine safety.     

Coping with distressed and aggressive parents

Illness is distressing, not only for the sick child but for parents worried simultaneously about their child's prognosis and the hospital system they are caught up in. Staff may become just as distressed as those in their care. When badly handled, such distress is easily turned into distrust, to anger and to blame, in parents who feel their complaints are unheard, who feel they have no-one close to turn to, who feel kept in the dark or assaulted by bad news insensitively given, who feel left out of the care of their child and decisions about the future, and who feel discriminated against. The challenge for the paediatrician is to get beyond the defensive stereotypes, to try to understand why the parents of a child have become so angry, and to learn from the experience. Three archetypal ‘cases’ are offered for discussion.