Poverty and pediatric palliative care: what can we do?
Child Poverty Tool and Resource Guide; content validity; life limiting illness; Pediatric palliative care; qualitative methods; social determinants of health
It has been recognized that families of children with life-limiting health conditions struggle with significant financial demands, yet may not have awareness of resources available to them. Additionally, health care providers may not be aware of the socioeconomic needs of families they care for. This article describes a mixed-methods study examining the content validity and utility for health care providers of a poverty screening tool and companion resource guide for the pediatric palliative care population. The study found high relevance and validity of the tool. Significant barriers to implementing the screening tool in clinical practice were described by participants, including: concerns regarding time required, roles and responsibilities, and discomfort in asking about income. Implications for practice and suggestions for improving the tool are discussed. Screening and attention to the social determinants of health lie within the scope of practice of all health care providers. Social workers can play a leadership role in this work.
2014
Beaune L; Leavens A; Muskat B; Ford-Jones L; Rapoport A; Zlotnik SR; Morinis J; Chapman LA
Journal of Social Work in End-of-Life & Palliative Care
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1080/15524256.2014.906375" target="_blank" rel="noreferrer">10.1080/15524256.2014.906375</a>
Posttraumatic growth in parents caring for a child with a life-limiting illness: A structural equation model.
Human Development; Adult; Aged; Caregivers/psychology; Child; Disabled Children/psychology; Humans; Male; Middle Aged; Models Psychological; Palliative Care/psychology; Parents/psychology; Young Adult
When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into adulthood and beyond. For those parents who have a child who is born with or is later diagnosed with a life-limiting illness, parents also become caregivers in ways that parents of predominantly well children do not. While the circumstances are undisputedly stressful, for some parents benefits can co-occur along with the negative outcomes. This article tests two structural equation models of possible factors that allow these parent caregivers to experience growth in the circumstances. The diagnosis and illness of a child in the context of pediatric palliative care is a very complex experience for parents. The stresses are numerous and life-changing and yet the parents in this research demonstrated growth as measured by the Post Traumatic Growth Inventory. It appears that particular personal resources reflected in personal well-being are a precursor to the process of positive meaning making, which then, in turn, contributes to growth. The path to posttraumatic growth is not a simple one, but this research contributes to further elucidating it.
Cadell S; Hemsworth D; Smit QT; Steele R; Davies E; Liben S; Straatman L; Siden H
The American Journal Of Orthopsychiatry
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1037/h0099384" target="_blank" rel="noreferrer">10.1037/h0099384</a>
Mortality trends for pediatric life-threatening conditions.
Pediatrics; Adolescent; British Columbia; Cause Of Death; Child; Child Mortality/trends; Child Preschool; Female; Hospice; Hospice Care/statistics & Numerical Data; Humans; Illness; Infant; Infant Newborn; Life-threatening Conditions; Male; Mortality; Palliative; Palliative Care/statistics & Numerical Data; Pediatric
Internal data from the sole pediatric hospice in British Columbia were utilized to investigate mortality trends among children dying from life-threatening conditions. Characteristics of the sample (hospice) were compared to that of the population (province) for individuals aged 0 to 18 years from 2002 to 2011. The provincial death rate was 2.30 per 10 000. The sample did not significantly vary with respect to sex and geographic distribution when compared to the population. Infants contributed to a significantly larger proportion of pediatric deaths in the population. Children referred to the hospice were more likely to be diagnosed with cancer and diseases of the nervous system. Only 15% of all pediatric deaths due to disease in the province were cared for by the hospice, calling for the strengthening of interdisciplinary palliative care programs.
Chavoshi N; Miller T; Siden H
The American Journal Of Hospice & Palliative Care
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1049909114524476" target="_blank" rel="noreferrer">10.1177/1049909114524476</a>
Mortality Trends for Pediatric Life-Threatening Conditions
hospice; mortality; illness; life-threatening conditions
Internal data from the sole pediatric hospice in British Columbia were utilized to investigate mortality trends among children dying from life-threatening conditions. Characteristics of the sample (hospice) were compared to that of the population (province) for individuals aged 0 to 18 years from 2002 to 2011. The provincial death rate was 2.30 per 10 000. The sample did not significantly vary with respect to sex and geographic distribution when compared to the population. Infants contributed to a significantly larger proportion of pediatric deaths in the population. Children referred to the hospice were more likely to be diagnosed with cancer and diseases of the nervous system. Only 15% of all pediatric deaths due to disease in the province were cared for by the hospice, calling for the strengthening of interdisciplinary palliative care programs.
2014-03
Chavoshi N; Miller T; Siden H
The American Journal Of Hospice & Palliative Care
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1049909114524476" target="_blank" rel="noreferrer">10.1177/1049909114524476</a>
An integrative approach to music therapy in pediatric palliative care.
Hospices; Music Therapy; Palliative Care; Adolescent; British Columbia; Child; Child Preschool; Female; Humans; Infant; Male; Program Development; Program Evaluation; Young Adult
Clark BA; Siden H; Straatman L
Journal Of Palliative Care
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://www.ncbi.nlm.nih.gov/pubmed/25265742" target="_blank" rel="noreferrer">25265742</a>
Innovations in Research with Medically Fragile Populations: Using Bulletin Board Focus Groups
Bulletin Board Focus Group; Case Studies; Complexity; Disability/Disabled Persons; End-Of-Life Issues; Focus Groups; Illness and Disease; Young Adults
A new group of medically fragile young adults are graduating from pediatric palliative care programs with limited expectations to live beyond early adulthood, and no comparable adult services to support their complex needs. Accessing this population is difficult because of the complexity of their conditions, the extensive personal and equipment supports that limit feasibility for travel, and divergent communication abilities. Therefore, we undertook a descriptive case study using an asynchronous modification of an online focus group, a bulletin board focus group (BBFG). The greatest strengths of the BBFG are the appeal of this methodology for young adults and the multi day focus group becomes both a community and an intervention. An important limitation of this method was participant follow through on discussion threads. This BBFG provided rich and varied types of data, and very positive participant experiences. Keywords: Bulletin Board Focus Group, Case Studies, Complexity, Disability/Disabled Persons, End-Of-Life Issues, Focus Groups, Illness and Disease, Young Adults
Cook K; Jack S; Siden H; Thabane L; Browne G
The Qualitative Report
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://nsuworks.nova.edu/tqr/vol19/iss39/1/" target="_blank" rel="noreferrer">tqr/vol19/iss39/1</a>
Excluding parental grief: A critical discourse analysis of bereavement accommodation in Canadian labour standards
BACKGROUND: Grief following child loss is profoundly destabilizing with serious long-term repercussions for bereaved parents. Employed parents may need time away from work to deal with this loss.OBJECTIVE: The purpose of this study was to reflect upon the ways labour policies and practices respond to parental bereavement.METHODS: Critical discourse analysis was used to examine labour policies and practices related to employment leave for bereaved parents in Canada. Results were compared to international labour standards.RESULTS: Universally, employment policies provide only for the practical issues of bereavement. Commonly, leave is three days, unpaid, and meant to enable ceremonial obligations. Policies do not acknowledge the long-term suffering caused by grief or the variable intensity of different kinds of loss. Managerial, moral, normative and neoliberal values embedded in these policies efface the intensely personal experience of grief, thereby leaving employees at risk for serious health and workplace safety issues.CONCLUSIONS: Bereavement leave currently understands grief as a generic, time-limited state with instrumental tasks and ceremonial obligations. In contrast, research characterizes responses to child loss as intense, highly personal experiences for which healing and recovery can take years. This disconnect is especially problematic when viewed through the lens of employee wellbeing, reintegration and workplace productivity.
2014-09
Macdonald ME; Kennedy K; Moll S; Pineda C; Mitchell LM; Stephenson PH; Cadell S
Work (reading, Mass.)
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.3233/WOR-141957" target="_blank" rel="noreferrer">10.3233/WOR-141957</a>
Using colors to assess pain in toddlers: validation of "the rainbow pain scale"-a proof-of-principle study.
Color; Age Factors; Child; Child Preschool; Female; Humans; Infant; Inpatients/psychology; Male; Neoplasms/psychology; Oncology; Oncology Nursing/methods; Outpatients/psychology; Pain; Pain/diagnosis/psychology; Pain Measurement/methods; Pain Scale; Pediatric Nursing/methods; Preschool Children; Psychometrics/instrumentation; Self Report
Self-report, when available, is considered the ideal way to assess the intensity and other aspects of pain in children. However, self-report scales are often too complex cognitively for preschool-aged children (2-4 years). The Rainbow Pain Scale (RPS) was developed to provide individualized self-reported pain ratings for preschool-aged children. The psychometric properties of this scale have yet to be evaluated. To ensure validity, our first step was to compare RPS scores to a well-validated scale in older children who were able to self-report their pain. The purpose of this study was to assess the concurrent validity of the RPS in children aged 5 to 10 years as proof of principle. We compared ratings of 49 children's pain using the RPS with those on the Faces Pain Scale-Revised (FPS-R). Participants suffering from pain related to cancer and cancer treatment were recruited to complete both scales at 3 time points, during both inpatient and outpatient clinic visits. Pearson's r and Cohen's kappa were used to evaluate the level of association between the scales. The association between RPS and the
Mahon P; Holsti L; Siden H; Strahlendorf C; Turnham L; Giaschi D
Journal Of Pediatric Oncology Nursing : Official Journal Of The Association Of Pediatric Oncology Nurses
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1043454214555197" target="_blank" rel="noreferrer">10.1177/1043454214555197</a>
Using Colors to Assess Pain in Toddlers: Validation of "The Rainbow Pain Scale"-A Proof-of-Principle Study
Self-report, when available, is considered the ideal way to assess the intensity and other aspects of pain in children. However, self-report scales are often too complex cognitively for preschool-aged children (2-4 years). The Rainbow Pain Scale (RPS) was developed to provide individualized self-reported pain ratings for preschool-aged children. The psychometric properties of this scale have yet to be evaluated. To ensure validity, our first step was to compare RPS scores to a well-validated scale in older children who were able to self-report their pain. The purpose of this study was to assess the concurrent validity of the RPS in children aged 5 to 10 years as proof of principle. We compared ratings of 49 children's pain using the RPS with those on the Faces Pain Scale-Revised (FPS-R). Participants suffering from pain related to cancer and cancer treatment were recruited to complete both scales at 3 time points, during both inpatient and outpatient clinic visits. Pearson's r and Cohen's κ were used to evaluate the level of association between the scales. The association between RPS and the FPS-R was greater than .7 at all 3 visits; r = .96 between the scales at the first clinic visit, .97 at the second visit, and .93 at the third visit. Cohen's κ between scales was 1.0 at the first clinic visit, .95 at the second visit, and .87 at the third visit. The RPS shows excellent concurrent validity with the FPS-R in school-aged children. The next step will be to examine the psychometric properties of the RPS in preschool-aged children.
2014-11
Mahon P; Holsti L; Siden H; Strahlendorf C; Turnham L; Giaschi D
Journal Of Pediatric Oncology Nursing
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1043454214555197" target="_blank" rel="noreferrer">10.1177/1043454214555197</a>
Improving Quality of life in Hospitalized Children
Children; quality of life; Hospital; Distress
There are many ways to add to children's quality of life within the hospital environment. Inpatient settings offer both opportunities and challenges with respect to providing care to children with life-threatening illnesses. The barriers to pediatric palliative care (PPC) on hospital wards, as with those in other settings, frequently stem from misconceptions. However, some barriers are intensified by characteristics of acute inpatient centers. Yet some characteristics of the inpatient setting, including the availability of human resources and unique interventions, offer creative ways to ease distress and improve quality of life for children and their families.
2014-08
Rapoport A; Weingarten K
Pediatric Clinics Of North America
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.pcl.2014.04.010" target="_blank" rel="noreferrer">10.1016/j.pcl.2014.04.010</a>
Characteristics of a pediatric hospice palliative care program over 15 years.
British Columbia/epidemiology; Child; Child Preschool; Cohort Studies; Demographics; Female; Hospice Care; Hospices/methods/trends; Humans; Life Threatening; Male; Palliative Care; Palliative Care/methods/trends; Patient Care Team/trends; Pediatrics/methods/trends; Retrospective Studies; Survival Rate/trends; Time Factors
OBJECTIVES: Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children's Hospice (CPCH) is North America's first freestanding pediatric hospice. This study describes the characteristics of and services delivered to all children on the CPCH program from 1996 to 2010. METHODS: A retrospective review of all patient medical records CPCH was conducted. Analyses examined trends and correlations between 40 selected data points: linear regression modeling was used to assess trends over time; t tests were used to examine significant associations between independent means; and the Kaplan-Meier method was used to measure survival probabilities. RESULTS: The study cohort included 649 children. The majority of diagnoses belonged to cancers (30%), and diseases of the neuromuscular (20%), and central nervous systems (18%). The majority of deaths occurred among the cancer (45%), central nervous system (15%), and metabolic disease groups (14%). By study end date, 24% of children were still alive, 61% died, and 15% transitioned to adult services (more than half of whom were cognitively competent). On average, 1024 days were spent on the CPCH program (median = 301). The majority of inpatient hospice discharges were for respite (82%); only 7% were for end-of-life care. Location of death was shared between CPCH (61%), hospital (22%), and home (16%). CONCLUSIONS: Diagnostic groups largely determine the nature and magnitude of services used, and our involvement with pediatric life-threatening conditions is increasing. Reviews of pediatric palliative programs can help evaluate the services needed by the population served.
Siden H; Chavoshi N; Harvey B; Parker A; Miller T
Pediatrics
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2014-0381" target="_blank" rel="noreferrer">10.1542/peds.2014-0381</a>
Lexicon of Terms in Pediatric Palliative Care
This Lexicon has been developed through a collaborative process by the PedPalASCNET network members as a tool for clinicians and researchers to standardize the usage of common terms in the field of pediatric palliative care. The Lexicon reflects the use of these words in Canada in the context of care for children with chronic complex and life-threatening conditions.
Spicer S, MacDonald ME, Vadeboncoeur C, Davies D, Siden H
PedPalASCNET
2014
© PedPalASCNET
Impact of research participation on parents of seriously ill children.
Biomedical Research; Child Health Services; Adolescent; Adult; Child; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Middle Aged; Palliative Care; Parents/psychology; Severity Of Illness Index; Surveys And Questionnaires; Young Adult
BACKGROUND: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns about further burdening families. Yet, there is some evidence that research participation can have positive effects for families. OBJECTIVE: To obtain parents' perceptions about their experience of participating in one of two research studies. DESIGN: Descriptive, quantitative survey. SETTING/SUBJECTS: Caregivers of children with life-threatening conditions (n=323) who were caring for the child at home. MEASUREMENTS: Researcher-designed Impact of Participation questionnaire. RESULTS: Few differences between the two groups were found on Impact responses. Not a single parent reported regretting participating in their study and almost all (96.3%) reported that conducting research about family's experiences in pediatric palliative care had value. Just over three-quarters (76.2%) did not find participation at all painful, and 73.7% reported that participation was about as painful as expected, with 23.2% reporting less painful. Approximately half (50.5%) said that participation had at least some positive effect and only three parents reported any negative effect. An overwhelming majority (93.4%) would recommend participation to other parents in a similar situation. CONCLUSIONS: Participation in research for families with children who have a life-threatening condition is not only acceptable to parents, but may in fact have a positive effect. Although clinicians and Institutional Review Boards may be hesitant to fully support such research, it is clear that conducting research in the field of pediatric palliative care is important.
Steele R; Cadell S; Siden H; Andrews GS; Smit QT; Feichtinger L
Journal Of Palliative Medicine
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2013.0529" target="_blank" rel="noreferrer">10.1089/jpm.2013.0529</a>
Impact of research participation on parents of seriously ill children
caregivers; research participation
Abstract Background: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns about further burdening families. Yet, there is some evidence that research participation can have positive effects for families. Objective: To obtain parents' perceptions about their experience of participating in one of two research studies. Design: Descriptive, quantitative survey. Setting/Subjects: Caregivers of children with life-threatening conditions (n=323) who were caring for the child at home. Measurements: Researcher-designed Impact of Participation questionnaire. Results: Few differences between the two groups were found on Impact responses. Not a single parent reported regretting participating in their study and almost all (96.3%) reported that conducting research about family's experiences in pediatric palliative care had value. Just over three-quarters (76.2%) did not find participation at all painful, and 73.7% reported that participation was about as painful as expected, with 23.2% reporting less painful. Approximately half (50.5%) said that participation had at least some positive effect and only three parents reported any negative effect. An overwhelming majority (93.4%) would recommend participation to other parents in a similar situation. Conclusions: Participation in research for families with children who have a life-threatening condition is not only acceptable to parents, but may in fact have a positive effect. Although clinicians and Institutional Review Boards may be hesitant to fully support such research, it is clear that conducting research in the field of pediatric palliative care is important.
2014-07
Steele R; Cadell S; Siden H; Andrews GS; Smit Quosai T; Feichtinger L
Journal Of Palliative Medicine
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/jpm.2013.0529" target="_blank" rel="noreferrer">10.1089/jpm.2013.0529</a>
Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions
PEDI Study; Metabolic; Neurodisability; Genetics
Background Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis, yet, little is known about their patterns of symptoms and functional abilities.Aim To describe these children's symptoms, as well as how the children's condition affects them physically.Design Cross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, that followed 275 children and their families.Setting/participants Seven tertiary care children's hospitals in Canada, 2 in the USA. Families were eligible based on the child's condition. A total of 275 children from 258 families participated.Results The 3 most common symptoms in these children were pain, sleep problems, and feeding difficulties; on average, they had 3.2 symptoms of concern. There was a pattern of under-reporting of children's symptoms for clinicians compared with parents. Regardless of use of associated medications, pain, feeding and constipation symptoms were often frequent and distressing. Children with a G/J tube had a higher total number of symptoms, and respiratory problems, pain, feeding difficulties and constipation were more likely to occur. They also tended to have frequent and distressing symptoms, and to need extensive mobility modifications which, in turn, were associated with higher numbers of symptoms.Conclusions These children experience multiple symptoms that have been previously documented individually, but not collectively. Effective interventions are needed to reduce their symptom burden. Future longitudinal analyses will examine which disease-modifying interventions improve, or do not improve, symptom burden.
2014-08
Steele R; Siden H; Cadell S; Davies B; Andrews GS; Feichtinger L; Singh M
Archives Of Disease In Childhood
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1136/archdischild-2013-305246" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2013-305246</a>