Editors: Goldman, Ann; Hain, Richard; Liben, Stephen
Oxford Textbook of
Copyright 2006 Oxford University Press, 2006 (Chapter 34: Danai Papadatou)
> Table of Contents > Section 3 - Symptom care > 17 - Symptoms in life-
Symptoms in life-threatening illness: Overview and assessment
J. John Collins
The aim of this chapter is to enhance and expand each reader's fund of knowledge with respect to the symptoms faced by children with life-limiting illnesses, particularly those with advanced and end-of-life illness. The chapter's
The prevalence of symptoms of children with life-limiting illnesses
The 1995 World Health Organization Report provided the dire statistics that 12.2 million children less than 5
What children experience as a result of their life-limiting illness is largely dependent upon where they live in the world. The causes of mortality
For example the treatment options available to children with HIV/AIDS varies according to geographical location. HIV/AIDS is known to cause pain and other systems from multiple causes, including the primary virus itself,
What frequently occurs in clinical practice is often not easily shared through the published literature. Parents and health care professionals develop ways of finding out how the child is feeling, tailored to the child. They may do this through trialing different language, facilitating their communication through the use of stuffed toys, through modeling, and
Table 17.1 Estimates of life-limiting conditions of childhood (in developed countries, based on UK surveys)
work has been primarily concentrated on pain in the oncology patient and pain assessment in the neonate. However, relative to the adult population, there remains a paucity of information about symptoms in the life-limiting illnesses of childhood. What is known comes largely from the oncology population, even though comprising only a third of childhood deaths. Where studies have been done, they tend to be focused on dying with an illness, inadequately addressing the child's experience of living with their illness.
The majority of studies have been based on caregiver report, whether that be a parent or health professional rather than from the perspective of the child experiencing the symptom. The pattern of symptoms, based on the self-report of US children aged 10 “18 treated for cancer, was studied. Inpatients reported more symptoms than outpatients, with a mean of 12.7 ±4.9 compared with 6.5 ±5.7, respectively. Recent administration of chemotherapy was associated with significant symptomatology. Children with solid
A similar survey was
In a review of the records of 157 US children with cancer who were referred for a
More than a decade has passed since studies confirmed the clinical
Pain relief for the vast majority of children with cancer should be achievable with what would be
Symptoms at the end of a child's life
Relative to the adult population, few surveys of the symptoms of children with life-limiting illnesses have been performed. Of these, most have consisted of small numbers of
Table 17.2 Compilation of retrospective reviews of children's end-of-life symptomology
out over several years. What is known about symptoms in dying children is frequently inferred from descriptive chart reviews that identify patients by age, diagnosis, and may include
A chart review study based in Japan, over a 6 “year period, examined the signs and symptoms occurring at the end-of-life in 28 children dying from cancer. The
A retrospective chart review from Canada gathered information about 77 infants and children whose deaths occurred at least 7 days since admission to hospital. The majority (83%), who ranged in age from 8 days to 16.8 years, died in the
Parents of children cared for at their end-of-life in several pediatric intensive care units retrospectively completed an anonymous questionnaire. Pain was only one component assessed and 55% of parents reported that their child was comfortable. Non-pain symptoms were not addressed [ 14 ].
The symptoms of children close to death were surveyed utilising the report of a proxy care-giver [
]. Respiratory failure and encephalopathy were noted as the most frequent physiologic disturbances, although they were not linked to how the child might feel as a consequence. The symptom profile in the last week of life demonstrated a significant constellation of 11.1 ±5.6 symptoms per child with six symptoms occurring in at least 50% of the children. The most frequently occurring symptoms included lack of energy, drowsiness, skin changes, irritability, pain, and
Over a 5 “year period, a Finnish study evaluated the pattern of end-of-life for children dying from cancer. Symptoms were largely inferred by the medications administered with the most detail for pain, as 89% of the children had received pain medication. Pain relief was reported by retrospective parental interview as inadequate in 19% of the children treated with analgesics [ 16 , 17 ].
Of the children cared for by a palliative home care program at a tertiary care hospital in Canada, a chart review documented that pain severe enough to require opioid therapy occurred in numbers approaching 90%. Parents reported that intractable pain, seizures, and dyspnea were the most distressing complications of their child's end-of-life phase [ 18 ].
A review of the deaths occurring over a 7 “year period in the inpatient wards at an Australian children's hospital was carried out through chart review. Where the 18
The palliative care service at a tertiary care pediatric hospital in the US described some of the characteristics of 154 infants, children, and young adults referred to the service over a 4-year period [ 20 ]. The majority of referrals were patients with cancer diagnoses with the balance being made up from a diverse array of childhood illnesses. Analgesic agents corresponding to Step “2 and 3 of the World Health Organization Ladder (WHO) [ 21 ] were provided for more than 80% of the patients. In addition to pain, another prominent symptom requiring intervention was sleep disturbance. 44% of the patients with cancer received chemotherapy concurrent with palliative care interventions. This dual model of care is representative of how palliative care in children is often best integrated with care directed to cure and/or to amelioration of the primary disease rather than either goal in isolation [ 22 ]. Of the 140 patients who died during the four years of the study period, 60% of them died at home.
The end-of-life care of patients more than 5 years of age and dying from cystic fibrosis was summarized through a chart review at a US tertiary care facility, where they had received their care [ 23 ]. Twenty-five percent of these patients had been receiving opioids for more than 3 months prior to their death for relief of chronic headache and/or chest pain. At end-of-life, the percentage of patients treated with opioids for dyspnea and/or chest pain increased to 86%.
Arthritis, headache, and chest pain are known sources of pain in patients living with cystic fibrosis. Osteoporosis may be a cause of pain, associated with protracted coughing with the risk of rib fractures. Headaches would be expected based on the physiology of hypercarbia and/or hypoxia, and/or sinus infection. The arthropathy seen in children with cystic fibrosis can be related to the hypertrophic pulmonary osteoarthropathy (HPOA), antibiotics, infections, or an associated kyphosis [ 24 ]. Of children dying of cystic fibrosis and reporting pain, 86% reported ˜serious pain with the most frequent locations being chest, headache, limb, abdomen, and back [ 25 ]. The increase in pain in their last three years of life may serve as a warning flag consistent with other signs of advanced, progressive disease [ 25 ].
Symptoms in children with neurodegenerative illnesses
While there have been missed opportunities to ask children how they feel in many life-limiting illnesses, many children with neurodegnerative illnesses have been even further marginalized. This population of children most often requires someone's assistance to observe and interpret how they feel. In a study at
Another study over an 11 “year period, at the same hospice, reviewed the care of 30 children admitted in their last month of life. Half of the children were non-communicative, with half of that
The assessment, diagnosis, and measurement of symptoms is fundamental to the care of any child with a life-limiting illness. Palliative therapeutics should generally be implemented concurrently while investigating, as appropriate, the underlying causative mechanisms, since therapies directed at the primary cause may ultimately have a more effective outcome for symptom management. Symptom assessment is complemented by symptom measurement. Measurement refers to the application of some metric to a specific element of a symptom. There is an increasing interest in the measurement of other domains of symptom experience beyond intensity, frequency and distress, for example.
A historical approach to the assessment and management of symptoms
Consider the child with cystic fibrosis or primary
The rationale for a focus on symptoms
When faced with the diagnosis of a life-limiting and chronic illness, the parents, health professionals, and the child, as developmentally appropriate, want to know what to expect [
]. What does the future hold? How will the child feel throughout the course of the illness? How can they best prepare for what is to come? A proactive approach, discussing, and planning for what symptoms may occur, confers some measure of control for all involved in the child's care, at a time of tremendous vulnerability. Being able to plan for the ˜what-ifs, to discuss the
Several end-of-life studies have involved parents monitoring their child's symptoms [
] Parents reported a greater
Understanding the link between symptoms and specific clinical conditions benefits the child through efforts directed to preventing the symptoms, lessening them, or helping a child and his/her family deal with them. Knowledge about these symptoms can also help health care professionals teach children how to identify and describe a symptom. Such information can further contribute to the prevention, amelioration, or resolution of symptoms.
Knowing the pattern of symptoms for a given life-limiting condition serves to drive interventions directed to relief of the symptom. Where existing therapies are either inadequate or absent, documentation of the symptom prevalence and associated distress can help advance research initiatives. For children who eventually die of their illness, the knowledge that their discomfort was proactively assessed and compassionately managed can, at best, ensure comfort for the bereaved survivors, or
Knowing what symptoms are likely to occur at the end-of-life and their time-course, may guide what supportive interventions might be recommended to
Symptoms and quality of life
It does not necessarily hold true that a child's quality of life is directly related to the degree of symptom burden. Quality of Life (QOL) is a complex, multifactorial, and a dynamic process. The words, meaning, and concepts used by quality of life assessment tools for adults require modifications unique to the illness, age and development of the child. In addition, the assessment is frequently delegated by default to someone other than the person whose QOL is being measured. This difficult task often
Despite the difficulties, there is a growing interest to supplement traditional
There is, therefore, a need for the development and use of a comprehensive tool for the measurement of symptoms in the context of quality of life assessment of children with cancer and non-cancer diagnoses.
Other than the child: A bigger view on distress
There may be instances when the parent, family member, friend, or health professional may be the ones most distressed by what they perceive as the child's experience in the course of care. The child's perceptions should be the priority for the symptoms addressed but this is not to the exclusion of other's concern and distress. For example, the
When to assess symptoms and when to treat?
Ensuring comfort is a medical imperative throughout the child's entire illness, not one reserved for the period of time identified as solely ˜palliative or ˜end-of-life . Symptoms are not sequestered into a block of time identified as the palliative or end-of-life phase of a life-limiting illness. Rather, symptoms may predominate at diagnosis and any time throughout the entire course of the illness. A US-based study of pediatric oncology patients noted the greatest suffering in children who died of treatment-related complications [ 12 ]. Ensuring the relief of pain and other symptoms is the ˜right thing to do
Clinicians are poor predictors of when a child may be approaching end-of-life. One study of clinicians and parents caring for children living with and dying from cancer reported that the understanding that the child had no realistic chance for cure was
Physical symptoms may be related to different and multiple factors, including the underlying illness, varied treatment-related side-effects, or to causes unrelated to either the primary disease or its treatment. Symptoms, such as fatigue, anorexia, and agitation, tend to cross disease groupings and may have multi-factorial causation.
Symptoms may make a significant contribution to morbidity. Despite a high prevalence, many symptoms may be relatively easily treated with conventional management. This is important information, as there may be an assumption that one must live with certain common aspects of the illness. This misperception may prevent care-givers from initiating relatively simple measures to ensure that the child can feel well and be as active as they can while living with the illness. Even uncommon symptoms can have import because of the degree of associated distress. Breathlessness, pain, or fatigue confer a profound impact on the child's activities and overall QOL. The meaning and value linked with the symptom may carry broader implications, as in the familial anxiety engendered by anorexia and asthenia.
General principles of symptom assessment
A clinical history, detailing the associated aspects of a symptom, including temporal factors, exacerbating features,
Common symptoms of children with life-limiting illness
The adequate, proficient and
Dyspnea is the subjective sensation of shortness of breath and is a highly distressing symptom for children. The treatment for dyspneic relief is distinct from pain, where for the latter, quality of life is generally improved and function maximized with conventional doses of conventional analgesics. Relief of the
Nausea and vomiting are not uncommon in children receiving palliative care. Nausea and vomiting occur when the vomiting centre in the brain is activated by any of the following: cerebral
Fatigue is a noteworthy symptom because of its prevalence,
In the assessment of fatigue in a child, and the matrix of its potential causes, it is important to establish if this symptom is distressing to the child and/or his family. If so, potential remediable causes should be considered. Therapies directed at the primary cause should be instituted only if these therapies are not a substantial burden to the patient and/or his family.
Seizures in children with life-limiting illnesses may be anticipated and managed expectantly, as a component of a particular condition, such as in many of the neurodegenerative illnesses. Seizures may also newly present in a child with a known seizure history who previously had achieved control, as the child becomes more ill. They can also present denovo in an ill child related to biochemical abnormalities without other risk factors. Seizures may be distressing to the child or more evidently distressing for those who
Mitchell was an 11 year old with a brain tumor whose pattern of seizure would start in the fingers of one hand and then ˜
Several of the signs manifested by many of the pediatric cancers relate to the effect on the bone marrow either because of direct marrow involvement by the cancer or the treatment's suppression of the marrow's production of white cells, red
The use of platelet transfusions at home for children with end-stage cancer was reviewed over a 5 “year period by a UK children's hospital. 35 transfusions were provided to 12 children for the following
Repeated transfusions, particularly in areas without the capacity for transfusions at home, requiring the child to be in hospital or ˜hooked-up for intermittent and extended periods, may not be how the child and/or family want to
Confusion or delirium
Although lacking the prevalence data, clinicians'
The assessment of symptoms at different stages of child development
An infant's symptoms ”an
Proactive management of potential symptoms at end-of-life
Emily was a
At 15 days of age, in preparation for withdrawal of ventilatory support, Emily was pre-medicated with an anti-cholinergic as she was unable to manage her secretions. Emily also received an opioid and anxiolytic to ensure she did not experience distress related to not being able to adequately ventilate.
Emily was unable to express how she felt. Being unable to adequately ventilate is recognized as a likely distressing entity and knowing that she would be unable to cough or swallow her secretions, she was medicated prior to extubation. This approach is sometimes necessary in infants where what is known to be a
Fig.17.1 Emily, a new born with a congenital muscular disorder.
An adolescent's symptoms ”an adolescent's story
Whose symptom and whose associated distress?
Gina was a savvy, independent 16 “year-old, who enjoyed cheerleading and a wide circle of friends (
). She experienced many difficulties during treatment of Ewing's sarcoma. A feisty individual, she toughed it out through an
Gina's course was complicated by
Despite achieving good analgesia and managing her nephrostomy and self-catheterizations, Gina became despondent because of fecal incontinence secondary to involvement of the cauda equina from spinal cord metastases. She
With various techniques, Gina was able to achieve fecal continence, enabling her to relax in a hot tub, a goal Gina had for her trip to California with her boyfriend, father, and stepmother [ 52 ].
Fig.17.2 Gina a 16 “year-old who experienced many difficulties during treatment of Ewing's sarcoma.
The importance of Gina's story is that it is the patient's distress with any given symptom that is the priority. The assumption might have been that having her pain well controlled was the priority of care. Such interventions had no import for Gina's quality of life if she could not also achieve fecal continence.
Symptom measurement in children
Pain (See Also Chapter 20 , Pain: Assessment)
In the view of field experts, the best instruments for measuring the severity of pain are visual analogue scales using one of the preferred facial expression scales [ 53 ]. In the very young child (aged 3 to 4), the self-report should be simple, with a maximum of three to five options. In persistent, recurrent, or chronic pain, it is appropriate to consider multidimensional assessment, and because few self-report scales of this nature exist, semi structured interviews may be required.
Cognitively intact children aged 7 years and older can rate the severity of their pain or other symptoms with a modified Likert scale scored from 0 to 10, as used in the adult population. Self-report measures for the cognitively intact,
Modifications to these scales for non pain symptoms, although having clinical utility, have not generally been validated for this context.
Behavioral observation measures
The measurement of symptoms in children who are unable to self-report, because of their age, impaired cognition, or difficulty communicating with voice or by pointing requires
There is a paucity of measurement tools for pain that may be chronic or other non pain symptoms. The Gauvain-Piquard rating scale is designed for the assessment of chronic pain in oncology patients 2 “6 years-of-age. The modified scale consists of 15 observed items, 9 of which are specific to pain assessment, 6 are related to what is referred to as ˜psychomotor retardation', and 4 assess anxiety. There is a maximum possible score of 60 as each item is rated from 0 to 4, with a score greater than 12 indicative of pain [ 58 ].
The child with cognitive
The non-verbal child whose medical condition causes them to have facial grimacing, dystonic posturing, and/or spasticity accompanied by increased tone makes observational assessment of distress even more difficult. There have
Nausea and vomiting
Instruments for the assessment of nausea and vomiting have been studied in the context of childhood cancer. A rating scale for nausea and vomiting utilising verbal descriptors was used in a series of assessment studies in children with cancer aged 5 “18 [ 61 , 62 , 63 , 64 ]. Children younger than 10 years had faces included above numbers on the scale. There was 80% agreement between parent and child rating when they were assessed independently.
A comparison of child and parental ratings of children's nausea and emesis symptoms was assessed among 33 children (aged 1.7 “17.5 years, median 4.7 years) with acute lymphoblastic leukemia receiving identical chemotherapy [
]. The measures utilised nausea and vomiting vignettes designed to assess the frequency and severity of nausea and emesis symptoms as reported by children and their parents based on the previous chemotherapy experience of the child. The vignettes, based on the work of Zeltzer [
], consisted of 12 questions separately assessing nausea and emesis at three time intervals: prior to, during, and after chemotherapy. A 5-point Likert-type rating scale
Recent work developing valid measures of child or adolescent cancer-related fatigue should help establish prevalence and incidence data about fatigue in children with varied life-limiting illnesses [
]. A new Children's Fatigue Scale (CFS), was
The many tools assessing apparent breathlessness have not been found to correlate with the patient's report of dyspnea, which is based on the self-report of a subjective sensation. Rather, these tools, such as the physiologic measures of respiratory rate, carbon dioxide or
For quantitative self-report, pictorial scales were developed for self-rating the sensation of dyspnea, based on focus groups of children living with asthma and cystic fibrosis. These four, 7-item scales were subsequently trialed in children with respiratory illnesses. Also evaluated were ratings of pain, fear, and sleep. Referred to as the ˜Dalhousie Dyspnea Scale , this visual analogue scale has been shown to have reliability for self-rating the intensity of one's breathlessness for children 6 years of age and older [ 72 ].
Multidimensional symptom assessment tools for children
The Memorial Symptom Assessment Scale (MSAS) 10 “18 is a 30 “item patient-rated instrument adapted from a previously validated adult version to provide multidimensional information about the symptoms experienced by children with cancer aged 10 “18 [ 5 ]. The scale was created to enable children to rate their own symptoms in terms of severity, frequency and distress. The analyses supported the reliability and validity of the MSAS 10 “18 subscale scores as measures of physical, psychological, and global symptom distress, respectively. The majority of patients could easily complete the scale in a mean of 11 min.
A revised MSAS was created as an instrument for the self-assessment of symptoms by children with cancer aged 7 “12 years [ 6 ]. Validity was evaluated by comparison with the medical record, parental report, and concurrent assessment on visual analogue scales for selected symptoms. The data provide evidence of the reliability and validity of MSAS (7 “12) and demonstrated that children as young as 7 years with cancer could report clinically relevant and consistent information about their symptom experience. The completion rate for MSAS 7 “12 was high and the majority of children completed the instrument in a short period of time and with little difficulty. The instrument appeared to be age appropriate and may be helpful to older children unable to independently complete MSAS 10 “18.
Fig.17.3 Daniel a 5 ½ “year-old with metastatic neuroblastoma.
Fig.17.4 Daniel's chest X-ray.
A child's symptoms ”a child's story
Breathlessness by whose assessment?
Daniel was a 5 ½ “year-old with metastatic neuroblastoma, having relapsed following treatment with chemotherapy, radiation, surgery, and a bone marrow
Daniel would describe his nausea as feeling ˜like I have to spew and ˜tummy cramps . His nausea and vomiting were managed with regular antiemetics including a pro-kinetic agent. Following
When Daniel developed a pleural effusion compounded by anemia with a hemoglobin of 62, he was reported as looking distressed with apparent breathlessness. However, he was unable to identify if he was ˜breathless or had ˜trouble with his breathing , nor could he say if his ˜breathing was bothering him (
). His parents noted that he was self-restricting his activity and arranging himself on the
Daniel did not find supplemental oxygen help him feel better. His apparent breathlessness was managed with a blood trans-fusion, opioids, anxiolytics, and physical measures, such as positioning, and cool air to his face. His parents rearranged the family room, so that Daniel could continue to enjoy watching the family activity in comfort.
Daniel required modifications to the developmentally appropriate pain scale. His mother tailored the visual analogue scale so that it was both acceptable to him and able to provide useful information about his pain. Fastidious observers of their children, parents are reliable sources of information about how their child may be behaving differently. They can help interpret for the health professional what behaviors may be indicative of physical distress.
Barriers to symptom assessment
Children and their families need to be provided with the rationale for the questions detailing the assessment. They may tire of the questions, particularly if they do not see an outcome that seems to be of benefit. Children may believe, ˜If I tell them how I feel they're only going to poke at me and do more tests.
There may be an assumption that symptoms are an expected part of the child's illness, and therefore, symptoms may not be reported. Congruent with this perception may be the child's or family's assumption that because the health professionals have a diagnosis, these clinicians would also know what the child would be experiencing. Children and families may have a view that the clinician would be addressing their symptoms if there was something that could be done about them [ 72 ].
Barriers specific to childhood development
The tools developed for use in the adult population are generally not applicable to pediatrics because of several factors. The items typically scored in adult symptom and QOL assessments would not be
Where assessment tools exist for children' symptoms and QOL, they are from the frequently narrow focus of a particular illness not easily generalizable or extrapolated to other illnesses. Life-limiting conditions of childhood are frequently unusual, uncommon, with an unclear
Whether and how children understand what is happening to their bodies and whether they perceive that they have any control over the situation can influence their degree of distress [ 72 ]. On occasion, illness can cause regression in the child's ˜usual capacity to understand and interact.
It is essential to the child's care that symptoms are anticipated and expectantly managed. Generally, compared with adults, children have little patience with medications that may make them feel some way they don't like, even if they are
Care of the pediatric population includes those who are non verbal by virtue of their age and others with cognitive impairment, both unable to use even those scales
Clinicians'obstacles to optimal symptom assessment
Despite the knowledge that medications exist to safely and adequately manage pain and other symptoms, clinicians do not necessarily use them appropriately or in a timely fashion. Despite the fact that opioids can be used safely and long-
Some clinicians continue to inappropriately choose to keep such agents ˜in reserve , when the child ˜really needs them or restrict their use to a time that is clearly end-of-life. Perhaps physicians may find that
If clinicians feel they are unable to conduct an accurate assessment of a child's pain or other symptom, they may be reluctant to trial an intervention, such as an opioid or an adjuvant for pain relief. The concern for potential adverse effects is generally greatly disproportionate to the reality. Unfortunately, such lack of understanding continues to be a formidable foe of excellent and appropriate care, being notably resilient, obstinate in the face of comprehensive evidence to the contrary.
Resources for symptoms in the life-limiting conditions of childhood
In addition to various references in the expanding literature relating to pediatric palliative care [
], some of the best current resources about symptoms in life-limiting conditions are through disease-specific
To help with the symptom profile of various illnesses
To help with the assessment and management of symptoms
A listserv accessible worldwide through e-mail/internet for issues relating to pediatric palliative care is accessible by sending an e-mail to firstname.lastname@example.org with subscribe as the subject line.
A listserv accessible worldwide through e-mail/internet for issues relating to pediatric pain is accessible by sending an e-mail to LISTSERV@is.dal.ca with the message SUB PEDIATRIC-PAIN and your first then last
www.act.org.uk and www.cnpcc.ca are two comprehensive web sites with excellent resources, including policies and educational materials and links for palliative care for children.
www.childendoflifecare.org A web-based resource with information, including audio clips for health care professionals, and families.
www.ich.ucl.ac.uk/cpap An initiative of the Institute of Child's Health and based at Great Ormond Street Hospital for Children, has developed The Children's Pain Assessment Project. Has links to other internet and paper-based resources.
www.ippcweb.org The Initiative for Pediatric Palliative Care ”A comprehensive website with curricula and resources.
UNIPAC Eight A Hospice/Palliative Medicine Approach to caring for Pediatric Patients. A paper-based, self-study curriculum from the American Academy of Hospice and Palliative Medicine.
ChIPPS Curriculum, from a collaboration between the Children's International Project on Palliative/Hospice Services and the National Hospice and Palliative Care Organization, www.nhpco.org.
To help with support for patients and their families (Information, Resources)
In addition to those listed above www.Bravekids.org www.faculty.fairfield.edu/fleitas/contents.html (also known as ˜Bandaids and Blackboards ). www.virtualhospice.ca Canadian Virtual Hospice is an interactive network for people dealing with life-threatening illness and loss.
Final thoughts and future directions
A recent study reported that 76% of the parents interviewed had noted that pain or discomfort was very important in guiding their decision to forgo life support for their children being cared for in several US-based pediatric intensive care units [
]. It should be contested that symptoms or the lack of their adequate management not be the driving force behind the decision-making in end-of-life care. The solace imagined to be offered by suggesting that, ˜at least their child is no longer suffering provides a
The numbers of children
To improve this aspect of care, at least five things must happen
If what is already known about what can help relieve pain and other symptoms is applied in every location where children experience distressing symptoms, from tertiary care in patient units, intensive care units, at home and in small rural community
The focus needs to be grounded first with the child. Efforts put into finding the right words and methods understandable and acceptable to the child should drive research initiatives on pain- and symptom-assessment in pediatrics. Systematic research directed to finding out how the children feel, from the children
The enthusiasm with which health professionals face the challenge of curing the child's illness needs to be shared with addressing how the child's feels living with and dying from their illness.
Granting for any clinical research should be incumbent on ensuring the study has clinical utility and the
Research granting agencies need to develop and strengthen their commitment to funding beyond the research, to ensure the study results advance care.
The human and
Grateful thanks are extended to the families of Emily, Mitchell Fraser, Daniel Penman, and Gina Smith, who very generously allowed their children's stories and pictures to be shared.
The kind contribution of Pamela S. Hinds PhD, RN, CS, Director of Nursing Research at St Jude Children's Research Hospital, Tennessee, is very much appreciated through the generous sharing of her work and review of the draft manuscript.
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