Exploring The Spiritual Needs Of Families With Seriously Ill Children
Adolescent; Child; Cultural Characteristics; Family/psychology; Female; Humans; Male; Needs Assessment; Nursing Assessment; Palliative Care; Professional-family Relations; Qualitative Research; Spirituality
Nursing; Spirituality; Pediatrics; Palliative Care; Qualitative
Although we know that families of seriously ill children experience spiritual distress, especially at the end of the child's life, there is little information on the specific spiritual needs of families. In order to develop further training for nurses in paediatrics and help nurses develop skills for communicating about spirituality, this research examined the spiritual needs of families based on nurses' experiences with families of seriously ill children. Nurses' experiences revealed that families' anger with God, blame/regret, forgiveness, and ritual and cultural traditions are salient spiritual needs requiring effective nurse communication skills to support families of ill children.
Ferrell B
International Journal Of Palliative Nursing
2016
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).
http://dx.doi.org/10.12968/ijpn.2016.22.8.388
End of Life Care for Infants, Children and Young People with Life Limiting Conditions: Summary of Nice Guidance
Adolescent; Advance Care Planning; Child; Humans; Infant; Patient Care Team; Patient Participation; Practice Guidelines As Topic; State Medicine; Terminal Care; United Kingdom
Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years. This guideline recommends that end of life care be managed as a long term process that begins at the time of diagnosis of a life limiting condition and entails planning for the future. Sometimes it may begin before the child’s birth. It is part of the overall care of the child or young person and runs in parallel with other active treatments for the underlying condition itself.1 Finally, it includes those aspects related to the care of the dying.
This guideline was commissioned with the aim to standardise end of life care for infants, children, and young people living with a life limiting condition, and thus promote equity and consistency. Important themes are to involve children and young people and their parents or carers in decisions about their care, facilitate their care in their preferred location (most likely home), and plan for day and night care.
This article summarises the most recent guidance from the recent National Institute for Health and Care Excellence (NICE) on the planning and management of end of life care in infants, children, and young people.2 For a visual summary, please see infographic.
Villanueva G; Murphy; MS; Vickers D; Harrop E; Dworzynski K
British Medical Journal
2016
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://doi.org/10.1136/bmj.i6385">10.1136/bmj.i6385</a>
Life Transitions Of Adolescents And Young Adults With Life-limiting Conditions
Adaptation Psychological; Adolescent; Adolescent Development; Adult; Brain Neoplasms; Child; Cystic Fibrosis; Disease Progression; Emotions; Family; Health Status; Humans; Mental Health; Muscular Dystrophy Duchenne; Neurodegenerative Diseases; Terminally Ill; Young Adult
Adolescents; Young Adults; Life-limiting Conditions; Life Transitions
Aims:
A systematic review was conducted to appraise and classify evidence related to the life transitions of adolescents and young adults with life-limiting conditions.
Methods:
The databases searched were MEDLINE, CINAHL, PsycINFO, CancerLit, and AMED. Methodological quality was assessed using an established tool and the final articles included in the study were rated as moderate to high quality. Articles were then assessed based on the insight that they provided into life transitions for adolescents and young adults.
Results:
Eighteen studies were included in the final review, with two major life transitions identified as pertinent: ‘illness transition’ and ‘developmental transition’. These concurrent transitions were found to be relevant to adolescents and young adults with life-limiting conditions, generating complex needs. Sub-themes within the transitions were also identified. Furthermore, the illness transition was found to also impact significant others, namely family members, having physical, mental and emotional health implications and requiring them to make adaptations.
Conclusions:
Future research is needed to focus on adolescent and young adult perspectives to bring further insight into these key transitions, since such perspectives are currently underrepresented. Attention to the impact of the illness on the whole family would be useful to expand findings from this review.
Johnston; Jindal-Snape; Pringle J
International Journal Of Palliative Nursing
2016
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).
DOI: http://dx.doi.org/10.12968/ijpn.2016.22.12.608
Families' Priorities In Life-limiting Illness: Improving Quality With Online Empowerment
Adolescent; Child; Child Preschool; Disabled Children/psychology; Family; Female; Hospice; Humans; Infant; Internet; Longitudinal Studies; Male; Palliative Care; Parents/psychology; Power (psychology); Quality Of Life/psychology; Social Support; Surveys And Questionnaires; United Kingdom; Young Adult
Child; Hospice; Outcome; Parents; Quality Of Life
OBJECTIVE:
Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
INTERVENTION:
MyQuality is an online tool that enables families to choose and monitor parameters they identify as having an impact on their QOL, which aims to improve patient-professional communications and also to enhance patient empowerment within healthcare dialogues.
DESIGN:
A longitudinal, multisite mixed-method evaluation of MyQuality. Families were invited to use MyQuality and completed semi-structured interviews and a Family Empowerment Scale (FES) at T=0 and T+3 months.
PATIENTS AND SETTING:
Thirty-two families of children with LLIs, attending three children's hospices in one UK region.
OUTCOME MEASURES:
Website access, usage patterns and parameter choice, FES scores and qualitative evaluation of interviews.
RESULTS:
23/32 families chose to use the website. Mean duration of use was 106 days (range 2-301), with families choosing two or three parameters (range 1-15), most commonly seizures (24/32), constipation (9/32), pain (6/32) and sleep problems (6/32). Mean FES scores increased over time (3.45-3.85). Interview feedback confirmed the acceptability and ease of use of the website, and the value of a graphic record of change over time to support ongoing management and collaborative review of medical, nursing or social interventions.
CONCLUSIONS:
The identification and monitoring of patient-generated priorities via the MyQuality website empowers families and supports collaboration between parents and professionals to ensure that palliative care is truly patient and family centred.
Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
Harris N; Beringer A; Fletcher M
Archives Of Disease In Childhood
2016
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).
doi: 10.1136/archdischild-2015-308769
An Order Protocol For Respiratory Distress/acute Pain Crisis In Pediatric Palliative Care Patients: Medical And Nursing Staff Perceptions
Acute Pain/therapy; Adolescent; Adult; Advance Directives; Aged; Attitude Of Health Personnel; Canada; Child; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Medical Staff Hospital/psychology; Middle Aged; Nursing Staff Hospital/psychology; Palliative Care/standards; Pediatric Nursing/standards; Practice Guidelines As Topic; Respiratory Distress Syndrome Adult/therapy; Surveys And Questionnaires; Young Adult
BACKGROUND:
An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family, the OPD is prescribed by the attending physician whenever judged appropriate. The OPD can then be initiated by the bedside nurse when necessary; the physician is notified after the first dose is administered.
OBJECTIVES:
The study objectives were to evaluate the perceptions and experience of the medical/nursing staff towards the use of the OPD.
METHODS:
A survey was distributed to all physicians/nurses working on wards with pediatric palliative care patients. Answers to the survey were anonymous, done on a voluntary basis, and after consent of the participant.
RESULTS:
Surveys (258/548) were answered corresponding to a response rate of 47%. According to the respondents, the most important motivations in using the OPD were the desire to relieve patient's distress and the speed of relief of distress by the OPD; the most important obstacles were going against the patient's/his or her family's wishes and fear of hastening death. The respondents reported that the OPD was frequently (56%) or always (36%) effective in relieving the patient's distress. The respondents felt sometimes (16%), frequently (34%), or always (41%) comfortable in giving the OPD. They thought the OPD could never (12%), rarely (32%), sometimes (46%), frequently (8%), or always (1%) hasten death. Physicians were less favorable than nurses with the autonomy of bedside nurses to initiate the OPD before notifying the physician (p = 0.04). Overall, 95% of respondents considered that they would use the OPD in the future.
CONCLUSIONS:
Data from this survey shows that respondents are in favor of using the OPD at SJH and find it effective. Further training as well as support for health care professionals are mandatory in such palliative care settings.
Bidet G; Daoust L; Duval M; Ducruet T; Toledano B; Humbert N
Journal Of Palliative Medicine
2016
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).
DOI: 10.1089/jpm.2015.0100
Palliative Care Research - A Systematic Review Of Foci, Designs And Methods Of Research Conducted In Sweden Between 2007 And 2012.
Adolescent; Adult; Aged; Aged 80 And Over; Child; Female; History 21st Century; Humans; Male; Middle Aged; Palliative Care; Research Design; Sweden; Young Adult
Sweden; End-of-life Care; Palliative Care; Research Designs; Research Methods; Review
BACKGROUND:
In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci.
METHODS:
A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'.
RESULTS:
A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children <18 years of age.
CONCLUSIONS:
The trend is that Swedish palliative care research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes.
Henoch I; Carlander I; Holm M; James I; Kenne Sarenmalm E; Lundh Hagelin C
Scandinavian Journal Of Caring Sciences
2016
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).
DOI: 10.1111/scs.12253
“the Nice Thing About Doctors Is That You Can Sometimes Get A Day Off School”: An Action Research Study To Bring Lived Experiences From Children, Parents And Hospice Staff Into Medical Students’ Preparation For Practice.
Adolescent; Child; Clinical Competence/standards; Education Medical/standards; Female; Focus Groups; Health Services Research; Hospice Care/standards; Humans; Male; Pediatrics/education; Pediatrics/standards; Physician-patient Relations
Education And Training; Hospice Care; Pediatrics; Palliative Care; Qualitative Research
Abstract
Patient and public involvement in healthcare is important to ensure services meet their needs and priorities. Increasingly, patient experiences are being used to educate healthcare professionals. The potential contribution to medical education of children and parents using hospice services has not yet been fully explored.
OBJECTIVES:
(1) To explore perceptions of what medical students must learn to become 'good doctors' among children, parents and staff in a hospice. (2) To collaborate with children/parents and staff to develop educational materials based on their lived experiences for medical students. (3) To assess feasibility of student-led action research in a children's hospice to develop research skills.
METHODS:
Prospective ethical approval received. Volunteer children (n=7), parents (n=5) and staff (n=6) were recruited from a children's hospice. Data were generated in audio-recorded semistructured focus groups, individual interviews and/or activity workshops. Participants discussed what newly qualified doctors' needed to care for children with life-limiting conditions. Audio data were transcribed and combined with visual data for thematic analysis. Findings were refined by participant feedback. This paper presents thematic findings and educational material created from the project.
RESULTS:
Thematic analysis identified six learning themes: (1) treat children as individuals; (2) act as a person before being a doctor; (3) interpersonal communication; (4) appreciate the clinical environment; (5) learn from children, parents and other staff; (6) how to be a doctor as part of a team. The student researcher successfully developed qualitative research skills, coproducing materials with participants for sharing learning derived from lived experiences.
CONCLUSIONS:
All participants were willing and able to make valuable contributions, and believed that this was a worthwhile use of time and effort. Further work is required to understand how best to integrate the experiences of children in hospices into medical education.
Spalding J; Yardley S
Bmj Supportive & Palliative Care
2016
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).
Investing In Uncertainty: Young Adults With Life-limiting Conditions Achieving Their Developmental Goals.
Disabilities; Transition; Adolescent; Policy; Perspectives; Health-care; Palliative Care; Health Care Sciences & Services; Youth
BACKGROUND:
With improvements in pediatric care and technology, more young adults (YAs) with life-limiting conditions (LLCs) are surviving into adulthood. However, they have limited expectations to live beyond the first decade of adulthood. This study describes the monumental efforts required for YAs with LLCs to achieve their goals in an abbreviated life.
OBJECTIVES:
The experiences and aspirations of YAs with LLCs to achieve their goals are relatively unknown. This report focuses on their experiences of living with uncertainty and its impact on achieving developmental goals.
DESIGN:
This study is one component of a larger descriptive study using an innovative bulletin board focus group to examine life experiences of YAs with LLCs.
RESULTS:
YAs with LLCs share the aspirations and goals of all YAs. Some participants demonstrated a striking capacity to navigate system barriers and achieve their goals, whereas others "got stuck" resulting in lost opportunities. Successful personal life investments were possible if resources were made available, coordinated, navigable, and responsive to new and special requests. Transformative changes to health, social care, and community services are necessary to support their YA ambitions.
CONCLUSIONS:
This study gave voice to those who were previously unheard and demonstrates the monumental hurdles YAs with LLCs face to achieve their goals. A palliative approach to care can mitigate unnecessary hardships and support their goals.
Cook KA; Jack SM; Siden H; Thabane L; Browne G
Journal Of Palliative Medicine
2016
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).
Methadone Conversion In Infants
And Children: Retrospective Cohort Study Of 199 Pediatric Inpatients.
Administration Oral; Adolescent; Age Factors; Analgesics Opioid/administration & Dosage; Analgesics Opioid/adverse Effects; Child; Child Preschool; Consciousness/drug Effects; Drug Administration Schedule; Drug Dosage Calculations; Drug Monitoring; Drug Overdose/etiology; Drug Substitution; Hospitals Pediatric; Humans; Infant; Infant Newborn; Inpatients; Intubation Intratracheal; Methadone/administration & Dosage; Methadone/adverse Effects; Minnesota; Pain/diagnosis; Pain/drug Therapy; Pharmacy Service Hospital; Respiration Artificial; Retrospective Studies; Risk Factors; Substance Withdrawal Syndrome/etiology; Tertiary Care Centers; Time Factors; Treatment Outcome; Substances; Analgesics Opioid; Methadone
OBJECTIVE:
Methadone administration has increased in pediatric clinical settings. This review is an attempt to ascertain an equianalgesic dose ratio for methadone in the pediatric population using standard adult dose conversion guidelines.
SETTING:
US tertiary children's hospital.
PATIENTS:
Hospitalized pediatric patients, 0-18 years of age.
MAIN OUTCOME MEASURES:
A retrospective chart review was conducted for patients who were converted from their initial opioid therapy regimen (morphine, hydromorphone, and/or fentanyl) to methadone. The primary endpoint was whether or not a dose correction was needed for methadone in the 6 days following conversion using standard dose conversion charts for adults. Documented clinical signs of withdrawal, unrelieved pain, or oversedation were examined.
RESULTS:
The majority (53.7 percent) of the 199 children were converted to methadone on intensive care units prior extubation or postextubation. The mean conversion ratio was 23.7 mg of oral morphine to 1 mg of oral methadone (median, 18.8 mg:1 mg, SD=25.7). Most patients experienced an adequate conversion (n=115, 57.8 percent), while 83 (41.7 percent) appeared undermedicated, and one child was oversedated. There were no associations found with conversion ratios for initial morphine dose, days to conversion, or effect of withdrawal of concomitant agents with potential for withdrawal.
CONCLUSIONS:
Opioid conversion to methadone is commonly practiced at our institution; however, dosing was significantly lower compared to adult conversion ratios, and more than 40 percent of children were undermedicated. The majority of children in this study received opioids for sedation while intubated and ventilated; therefore, safe and efficacious pediatric methadone conversion rates remain unclear. Prospective studies are needed.
Fife A; Postier A; Flood A; Friedrichsdorf SJ
Journal Of Opioid Management
2016
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).
Parental Decision-making On
Utilisation Of Out-of- Home Respite In Children’s Palliative Care: Findings Of
Qualitative Case Study Research - A Proposed New Model.
Adolescent; Adult; Child; Child Preschool; Decision Making; Female; Humans; Ireland/epidemiology; Longitudinal Studies; Male; Palliative Care/psychology; Parents/psychology; Qualitative Research; Quality Of Health Care; Respite Care; Social Support; Terminally Ill/psychology
Children; Pediatrics; Palliative Care; Parents; Respite
Background
Respite in children's palliative care aims to provide a break for family's from the routine of caring. Parental decision-making regarding the utilisation of out-of-home respite is dependent on many interlinking factors including the child's age, diagnosis, geographical location and the family's capacity to meet their child's care needs. A proposed model for out-of-home respite has been developed based on the findings of qualitative case study research.
Methods
Utilising multiple, longitudinal, qualitative case study design, the respite needs and experiences of parents caring for a child with a life-limiting condition were explored. Multiple, in-depth interviews were undertaken with the parents identified by a hospital-based children's palliative care team. Data were analysed using thematic analysis. Each individual case consists of a whole study. Cross-case comparison was also conducted.
Results
Nine families were recruited and followed for two years. A total of 19 in-depth interviews were conducted with mothers and fathers (one or both) caring for a child with a life-limiting condition in Ireland. Each family reported vastly different needs and experiences of respite from their own unique perspective. Cross-case comparison showed that for all parents utilising respite care, regardless of their child's age and condition, home was the location of choice. Many interlinking factors influencing these decisions included: past experience of in-patient care, and trust and confidence in care providers. Issues were raised regarding the impact of care provision in the home on family life, siblings and the concept of home.
Conclusion
Respite is an essential element of children's palliative care. Utilisation of out-of-home respite is heavily dependent on a number of interlinked and intertwined factors. The proposed model of care offers an opportunity to identify how these decisions are made and may ultimately assist in identifying the elements of responsive and family-focused respite that are important to families of children with life-limiting conditions.
Ling J; Payne S; Connaire K; McCarron M
Child: Care, Health And Development
2016
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).
Short Break And Emergency Respite Care: What Options For Young People With Life-limiting Conditions?
Adolescent; Adult; Emergency Medical Services; Focus Groups; Humans; Interviews As Topic; Respite Care; Terminally Ill; Young Adult
Life-limiting Conditions; Palliative Care; Respite Care; Short Breaks; Transition; Young People
BACKGROUND:
Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care.
OBJECTIVE:
To explore alternative short break and emergency respite care options to children's hospice care.
METHODS:
A two-phase evaluation with young people, families and professionals. Phase 1: qualitative semi-structured interviews and focus groups (n=53). Phase 2: mixed-method survey (n=82), qualitative findings only.
RESULTS:
There were few, or no, appropriate short break and emergency respite care alternatives when children's hospice care was not available that can meet the need of young people with life-limiting conditions, creating anxiety for children's hospice users and those leaving the service as a result of reaching transition age or through no longer meeting the children's hospice eligibility criteria.
CONCLUSION:
Access to appropriate short break and emergency respite care is required to prevent lifelong negative consequences for young people with life-limiting conditions, their family and society. Research is undoubtedly required to explore the impact and outcomes of children's hospice discharge for young people and their family. Particular attention should be paid to the lack of services for an increasing population making the transition from children's hospices.
Mitchell TK; Knighting K; O’Brien MR; Jack BA
International Journal Of Palliative Nursing
2016
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).
Protocol: Evaluating The Impact Of A Nation-wide Train-the-trainer Educational Initiative To Enhance The Quality Of Palliative Care For Children With Cancer
Adolescent; Canada; Child; Child Preschool; Curriculum/standards; Health Personnel/education; Humans; Neoplasms/therapy; Palliative Care/methods; Palliative Care/standards; Pediatrics/methods; Program Evaluation; Quality Of Life/psychology; Teaching/standards
Pediatrics; Palliative Care; Cancer Quality Care; Education Knowledge Translation
Background
There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a ‘Train-the-Trainer’ model.
Methods/design
In this study we are using a pre- post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, ‘Master Facilitators’ will train ‘Regional Teams’ affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC®-Pediatrics curriculum to ‘End-Users’ in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams.
Discussion
Through this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of the impact of EPEC®-Pediatrics both on dissemination outcomes and on care quality at a national level. Based on the anticipated success of our project we hope to expand the EPEC®-Pediatrics roll-out to health professionals who care for children with non-oncological life-threatening conditions.
Widger K; Friedrichsdorf SJ; Wolfe J; Liben S; Pole JD; Bouffet E; Greenberg M; Husain A; Siden H; Whitlock JA; Rapoport A
Bmc Palliative Care
2016
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).
DOI: 10.1186/s12904-016-0085-8
Staff Efficiency Trends Among Pediatric Hospices, 2002-2011.
Adolescent; California; Child; Child Preschool; Efficiency Organizational/statistics & Numerical Data; Female; Forecasting; Hospice Care/statistics & Numerical Data; Hospice Care/trends; Hospice Care/statistics & Numerical Data; Hospices/trends; Hospitals Pediatric/statistics & Numerical Data; Hospitals Pediatric; Humans; Infant; Infant Newborn; Male; Personnel Staffing And Scheduling/statistics & Numerical Data; Personnel Staffing And Scheduling/trends; Workload/statistics & Numerical Data; Young Adult
This study provided the first examination of staff efficiency trends among pediatric hospices. Although pediatric staff efficiency demonstrated large variability from 2002 to 2011, the general trend in efficiency from 2003 to 2010. The decline in efficiency means, on average, pediatric hospices had higher operating expenses and used more capacity, but greater amounts of these greater outputs as measured by visits per patient. The study also highlights the crucial role pediatric hospice nurse managers play in developing effective workforce strategies that allow for responsive changes to workload fluctuations. Due to the associations between efficiency, regulation, and growth, nurse leaders' abilities to develop effective strategies are more imperative than ever to ensure quality end-of-life care for children and their families.
Cozad MJ; Lindley LC; Mixer SJ
Nursing Economic$
2016
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).
PMCID: PMC5045247
Ethics, Emotions, And The Skills Of Talking About Progressing Disease With Terminally Ill Adolescents: A Review.
Parents; Young Adult; Prognostic Disclosure; Advanced Cancer; Of-life Care; Communication; Pediatric Palliative Care; Child; End; Pediatrics; Bad-news; Adolescent; Ethics; Communication; Emotions; Teenagers; Youth; Analysis; Psychological Aspects
IMPORTANCE:
For clinicians caring for adolescent patients living with progressive, life-threatening illness, discussions regarding prognosis, goals of care, and treatment options can be extremely challenging. While clinicians should respect and help to facilitate adolescents' emerging autonomy, they often must also work with parents' wishes to protect patients from the emotional distress of hearing bad news.
OBSERVATIONS:
We reviewed the ethical justifications for and against truth-telling, and we considered the published ethical and practice guidance, as well as the perspectives of patients, parents, and clinicians involved in these cases. We also explored particular challenges with respect to the cultural context, timing, and content of conversations at the end of adolescents' lives. In most cases, clinicians should gently but persistently engage adolescents directly in conversations about their disease prognosis and corresponding hopes, worries, and goals. These conversations need to occur multiple times, allowing significant time in each discussion for exploration of patient and family values. While truth-telling does not cause the types of harm that parents and clinicians may fear, discussing this kind of difficult news is almost always emotionally distressing. We suggest some "phrases that help" when clinicians strive to deepen understanding and facilitate difficult conversations with adolescents, parents, and other family members.
CONCLUSIONS AND RELEVANCE:
The pediatrician's opportunities to engage in difficult conversations about poor prognosis may be rare, but such conversations can be crucial. These discussions affect how patients live at the end of their lives, how they die, and how their families go on. Improved understanding of basic principles of communication, as well as augmented understanding of patient, family, and clinician perspectives may better enable us to navigate these important conversations.
Rosenberg AR; Wolfe J; Wiener L; Lyon M; Feudtner C
Jama Pediatrics
2016
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).
DOI: 10.1001/jamapediatrics.2016.2142
Nurses' Experiences Of Spiritual Communication With Seriously Iii Children.
Methods; Nurse's Role; Pediatric Nursing; Child; Adolescent; Health Promotion; Nursing & Ancillary Services; Electronic Books; Local; Children's Health; Health & Fitness
Palliative Care Nursing Issues; Pediatric Palliative Care; Spirituality
The goal of this study was to explore nurse experiences in communication with children about spiritual topics in order to develop training in this area.
BACKGROUND:
Although spiritual care is essential in pediatric palliative care, few providers receive training about communication with ill children about spirituality.
METHODS:
Researchers developed a brief survey to prompt nurses to reflect on pediatric palliative care experiences that included spiritual discussions. Nurses attending training courses voluntarily submitted stories. Qualitative data were thematically analyzed by members of the research team, consisting of two researchers with expertise in palliative care, spirituality, and communication and two expert pediatric palliative care clinicians.
RESULTS:
Nurses' spiritual conversations with children revealed that children question God and the reason for their illness, have a desire to talk about the afterlife as a way of understanding their limited lifespan, and to share descriptions of an afterlife, in these cases described as heaven. Nurses conveyed the importance of being present and engaging in spiritual communication with children.
DISCUSSION:
Communication training is needed and should prepare providers to respond to a child's spiritual questioning, assist parents when the child initiates discussion about the afterlife, and help parent and child understand the spiritual meaning of their illness. Chaplains serve as spiritual care experts and can help train nurses to screen for spiritual distress, have greater competence in spiritual communication, and to collaborate with chaplains in care. Quality palliative care is incomplete without attention to spiritual care.
Ferrell B; Wittenberg E; Battista V; Walker G
Journal Of Palliative Medicine
2016
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).
DOI: 10.1089/jpm.2016.0138
Pediatric Palliative Care And Child Psychiatry: A Model For Enhancing Practice And Collaboration.
Adolescent; Advanced Cancer; Of-life; Consultation; Services; National-survey; End; Depression; Recognition; Associations; Health Care Sciences & Services
As the field of Pediatric Palliative Care continues to develop, it is important to consider the scope of practice and the utility of collaboration with other specialties, including child and adolescent psychiatry. The integration of psychiatry and palliative medicine has been explored in adult practice, but has not yet been elaborated in pediatrics. This article proposes a clinical model of care that highlights the overlapping and unique expertise that each discipline brings, in a continuum of collaboration, and proposes an integrated care model for the most complex patients and families. Case examples are used to define specific professional skills and roles, and to describe shared and distinct clinical approaches used by pediatric palliative care and child psychiatry. Effective collaboration provides opportunities for cross-disciplinary educational exchange and enhanced care of children and families with comorbid mental health issues and serious illness.
Muriel AC; Wolfe J; Block SD
Journal Of Palliative Medicine
2016
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).
DOI: 10.1089/jpm.2015.0354
Perceptions Of The Pediatric Hospice Experience Among English- And Spanish-speaking Families
Adolescent; Adult; Attitude To Death/ethnology; Caregivers/psychology; Child; Child Preschool; Communication; Ethnic Groups/psychology; European Continental Ancestry; Group/psychology; Family/psychology; Female; Hispanic Americans/psychology; Hospice Care/psychology; Humans; Infant; Male; Middle Aged; Neoplasms/nursing; Neoplasms/psychology; Young Adult
OBJECTIVE:
Many children who die are eligible for hospice enrollment but little is known about parental perceptions of the hospice experience, the benefits, and disappointments. The objective of this study was to explore parental perspectives of the hospice experience in children with cancer, and to explore how race/ethnicity impacts this experience.
STUDY DESIGN:
We held 20 semistructured interviews with 34 caregivers of children who died of cancer and used hospice. Interviews were conducted in the caregivers' primary language: 12 in English and 8 in Spanish. Interviews were recorded, transcribed, and analyzed using accepted qualitative methods.
RESULTS:
Both English and Spanish speakers described the importance of honest, direct communication by medical providers, and anxieties surrounding the expectation of the moment of death. Five English-speaking families returned to the hospital because of unsatisfactory symptom management and the need for additional supportive services. Alternatively, Spanish speakers commonly stressed the importance of being at home and did not focus on symptom management. Both groups invoked themes of caregiver appraisal, but English-speaking caregivers more commonly discussed themes of financial hardship and fear of insurance loss, while Spanish-speakers focused on difficulties of bedside caregiving and geographic separation from family.
CONCLUSIONS:
The intense grief associated with the loss of a child creates shared experiences, but Spanish- and English-speaking parents describe their hospice experiences in different ways. Additional studies in pediatric hospice care are warranted to improve the care we provide to children at the end of life.
Thienprayoon R; Marks E; Funes M; Martinez-Puente LM; Winick N; Lee SC
Journal Of Palliative Medicine
2016
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).
DOI: 10.1089/jpm.2015.0137
How Parents And Physicians Experience End-of-life Decision-making For Children With Profound Intellectual And Multiple Disabilities.
Adolescent; Adult; Attitude Of Health Personnel; Attitude To Health; Cerebral Palsy; Child; Child Preschool; Decision Making; Disabled Children; Dissent And Disputes; Female; Humans; Infant; Infant Newborn; Intellectual Disability; Male; Middle Aged; Neurologists; Palliative Care; Parents; Pediatricians; Professional-family Relations; Qualitative Research; Resuscitation Orders; Retrospective Studies; Severity Of Illness Index; Terminal Care; Young Adult
Caregiver; End Of Life; Healthcare Professional; Intellectual Disability; Qualitative Research; Shared Decision-making
BACKGROUND:
End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions.
AIMS:
The objective of this research was to investigate the experiences of the parents and the involved physician during the end-of-life decision-making (EoLDM) process for children with PIMD.
METHODS:
In a retrospective, qualitative study, we conducted semi-structured interviews with the physicians and parents of 14 children with PIMD for whom an EoLD was made within the past two years.
RESULTS:
A long-lasting relationship appeared to facilitate the EoLDM process, although previous negative healthcare encounters could also lead to distrust. Parents and physicians encountered disagreements during the EoLDM process, but these disagreements could also improve the decision-making process. Most parents, as well as most physicians, considered the parents to be the experts on their child. In making an EoLD, both parents and physicians preferred a shared decision-making approach, although they differed in what they actually meant by this concept.
CONCLUSION:
The EoLDM process for children with PIMD can be improved if physicians are more aware of the specific situation and of the roles and expectations of the parents of children with PIMD.
Zaal-Schuller IH; Willems DL; Ewals FV; van Goudoever JB; de Vos MA
Research In Developmental Disabilities
2016
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).
DOI: 10.1016/j.ridd.2016.09.012
Acceptability Of Family-centered Advanced Care Planning For Adolescents With Hiv
Adolescent Health Services/sn [statistics & Numerical Data]; Advance Care Planning; Family/px [psychology]; Hiv Infections/th [therapy]; Patient Acceptance Of Health Care/sn [statistics & Numerical Data]; Adolescent; Family Nursing; Female; Hiv Infections/px [psychology]; Humans; Male; Prospective Studies; Surveys And Questionnaires; United States; Young Adult
BACKGROUND AND OBJECTIVE: Small pilot studies support the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). We do not yet know if pACP is acceptable, feasible, and worthwhile, even if emotionally intense, in a fully powered randomized controlled trial. METHODS: We conducted a prospective 2-arm randomized controlled trial at 6 US urban hospitals. Adolescent/family member dyads were randomized to receive the 1-session-a-week 3-session FAmily-CEntered Advance Care Planning (FACE) pACP intervention (1, ACP Survey; 2, Goals of Care Conversation/Treatment Preferences; 3, Completion of Advance Directive) or active comparator (1, Developmental History; 2, Safety Tips; 3, Nutrition/Exercise). The Satisfaction Questionnaire was administered to participants independently after each session by a blinded research assistant. RESULTS: We enrolled 53% of eligible participants and intervened with 97 adolescent/family dyads. Adolescents ranged in age from 14 to 21 years; 54% were male individuals; 93% African American; and 73% perinatally infected. Attendance was 99% for all 3 sessions in each arm. At session 3, FACE adolescents and family dyad members, respectively, found the session useful (98%, 98%) and helpful (98%, 100%), despite feelings of sadness (25%, 17%). FACE adolescents' improvement in the total subscale A score (useful, helpful, like a load off my mind, satisfied, something I needed to do, courageous, worthwhile) was better than control adolescents at session 3 (beta = 1.16, P = .02). There were no adverse events. CONCLUSIONS: FACE enabled worthwhile conversations, while simultaneously eliciting intense emotions. No participants withdrew, 99% of those enrolled completed each session, and there were no adverse events, evidence of pACP's feasibility, acceptability, and safety.
Dallas R H; Kimmel A; Wilkins M L; Rana S; Garcia A; Cheng Y I; Wang J; Lyon M; Adolescent Palliative Care Consortium
Pediatrics
2016
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10.1542/peds.2016-1854
End-of-life Transitions And Hospice Utilization For Adolescents: Does Having A Usual Source Of Care Matter?
Adolescent; End-of-life; Hospice; Pediatric; Transition
Adolescents with life-limiting illnesses have intensive end-of-life trajectories and could benefit from initiation of hospice services. The medical home model, which includes having a usual source of primary care, may help facilitate quality outcomes at the end-of-life for adolescents. The purpose of this study was to determine the relationship between having a usual source of primary care on hospice utilization and end-of-life transitions among adolescents between 15-20 years with a life-limiting illness. A retrospective cohort design used 2007-2010 California Medicaid claims data (n=585). Our dependent variables were hospice utilization (i.e., hospice enrollment, hospice length of stay) and the independent variable was usual source of primary care. Multivariate regression techniques including least squares regression, multivariate logistic regression, and negative binomial regression were used in the analysis of the relationship between usual source of primary care and hospice utilization and end-of-life transitions. Ten percent of our sample utilized hospice services. Having a usual source of primary care was associated with an increase in hospice enrollment, hospice length of stay, and end-of-life transitions. Adolescents with a cancer diagnosis were more likely to enroll in hospice services. For adolescents at the end of life, having a usual source of primary care had a significant impact on hospice enrollment and length of stay. This study is among the first to demonstrate a relationship between primary care and hospice use among this vulnerable population.
Keim-Malpass J; Lindley LC
Journal Of Hospice And Palliative Nursing
2017
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DOI: 10.1097/NJH.0000000000000361
Pediatric Primary Care Involvement In End-of-life Care For Children
Primary Health Care/sn [statistics & Numerical Data]; Terminal Care/sn [statistics & Numerical Data]; Adolescent; Age Factors; California; Child; Child Preschool; Female; Home Care Services/sn [statistics & Numerical Data]; Hospice Care/sn [statistics & Numerical Data]; Humans; Infant; Male; Retrospective Studies; Young Adult
OBJECTIVES: To examine the relationship between pediatric primary care involvement and hospice and home health care use at end of life. METHODS: California Medicaid data were used to estimate the relationship between pediatric primary care involvement and use of hospice and home health care using generalized estimating equations. RESULTS: Of the 2037 children who died between 2007 and 2010, 11% used hospice and 23% used home health. Among all children, primary care was not related to hospice use and was associated with home health use, usual source of care (OR = 1.83, P < .05), comprehensive care (OR = 1.60, P < .05), and continuous care (low: OR = 1.49, P < .05; moderate: OR = 2.57, P < .05; high: OR = 2.12, P < .05). Primary care for children aged 15 to 20 years was related to hospice use, usual source of care (OR = 4.06, P < .05) and continuous care (low: OR = 4.92, P < .05; moderate OR = 4.09, P < .05; high OR = 3.92, P < .05). Primary care for children under 5 years was associated with home health use, usual source of care (OR = 2.59, P < .05), comprehensive care (OR = 2.49, P < .05), and continuous care (low: OR = 2.22, P < .05; moderate: OR = 3.64, P < .05; high: OR = 3.62, P < .05). For children aged 6 to 14 years, this association was seen with continuous care (moderate: OR = 2.38, P < .05; high: OR = 2.13, P < .05). Home health for children aged 15 to 20 years was related to continuous care (moderate: OR = 2.32, P < .05). CONCLUSION: Primary care involvement affected hospice use among older age-groups and home health use among younger age-groups. These findings underscore the need for clinical knowledge about end-of-life care for children of all ages among primary care providers.
Lindley LC; Nageswaran S
American Journal Of Hospice And Palliative Medicine
2017
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10.1177/1049909115609589
Spirituality In Adolescent Patients
Adolescent; Illness; Spirituality
Adolescence, the transition between childhood and adulthood, represents a time of rapid biological, neurocognitive, and psychosocial changes. These changes have important implications for the development and evolution of adolescent spirituality, particularly for adolescents with chronic or life-limiting illnesses. To contribute positively to adolescent spiritual formation, palliative care teams benefit from understanding the normative changes expected to occur during adolescence. This paper provides a narrative review of adolescent spirituality while recognizing the role of religious, familial, and cultural influences on spiritual development during the teenage years. By giving explicit attention to the contextual norms surrounding adolescence and still recognizing each adolescent-aged patient as unique, palliative care teams can help adolescents transition toward meaningful and sustainable spiritual growth. This paper reviews the clinical and research implications relevant to integrating adolescent spiritual health as part of comprehensive palliative care.
Weaver M; Wratchford D
Annals Of Palliative Medicine
2017
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DOI: 10.21037/apm.2017.05.09
Place Of Death Of Children With Complex Chronic Conditions: Cross-national Study Of 11 Countries
Cause Of Death; Palliative Therapy; Adolescent; Belgium; Cancer Epidemiology; Child; Controlled Study; Cultural Value; Death Certificate; Female; Girl; Human; Logistic Regression Analysis; Major Clinical Study; Male; Malignant Neoplastic Disease; Mexico; Neuromuscular Disease; South Korea; Sweden
Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with complex chronic conditions (CCC) die and to investigate associations between places of death and sex, cause of death and country. The study used death certificate data of all deceased 1- to 17-year-old children (n = 40,624) who died in 2008, in 11 European and non-European countries. Multivariable logistic regression was performed to determine associations between place of death and other factors. Between 24.4 and 75.3% of all children 1-17 years in the countries died of CCC. Of these, between 6.7 and 42.4% died at home. In Belgium and the USA, all deaths caused by CCC other than malignancies were less likely to occur at home, whereas in Mexico and South Korea, deaths caused by neuromuscular diseases were more likely to occur at home than malignancies. In Mexico (OR = 0.91, 95% CI: 0.83-1.00) and Sweden (OR = 0.35, 95% CI: 0.15-0.83), girls had a significantly lower chance of dying at home than boys. Conclusion: This study shows large cross-national variations in place of death. These variations may relate to health system-related infrastructures and policies, and differences in cultural values related to place of death, although this needs further investigation. The patterns found in this study can inform the development of paediatric palliative care programs internationally.(Table presented.) Copyright © 2017 Springer-Verlag Berlin Heidelberg
Hakanson C; Ohlen J; Kreicbergs U; Cardenas-Turanzas M; Wilson DM; Loucka M; Frache S; Giovannetti L; Naylor W; Rhee Y; Ramos MR; Teno J; Beernaert K; Deliens L; Houttekier D; Cohen H
European Journal Of Pediatrics
2017
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10.1007/s00431-016-2837-0
Volunteer Activity In Specialist Paediatric Palliative Care: A National Survey
Statistics And Numerical Data; Adolescent; Adult; Cross-sectional Study; England; Female; Health Care Survey; Home Care; Hospice; Hospice Care; Hospital Volunteer; Human; Internet; Male; Organization And Management; Palliative Therapy; Pediatrics; Procedures; Questionnaire; Specialization; Young Adult
OBJECTIVE: To assess the involvement of volunteers with direct patient/family contact in UK palliative care services for children and young people. METHOD: Cross-sectional survey using a web-based questionnaire. SETTING: UK specialist paediatric palliative care services. PARTICIPANTS: Volunteer managers/coordinators from all UK hospice providers (n=37) and one National Health Service palliative care service involving volunteers (covering 53 services in total). MAIN OUTCOMES: Service characteristics, number of volunteers, extent of volunteer involvement in care services, use of volunteers' professional skills and volunteer activities by setting. RESULTS: A total of 21 providers covering 31 hospices/palliative care services responded (30 evaluable responses). Referral age limit was 16-19 years in 23 services and 23-35 years in seven services; three services were Hospice at Home or home care only. Per service, there was a median of 25 volunteers with direct patient/family contact. Services providing only home care involved fewer volunteers than hospices with beds. Volunteers entirely ran some services, notably complementary therapy and pastoral/faith-based care. Complementary therapists, school teachers and spiritual care workers most commonly volunteered their professional skills. Volunteers undertook a wide range of activities including emotional support and recreational activities with children and siblings. CONCLUSIONS: This is the most detailed national survey of volunteer activity in palliative care services for children and young people to date. It highlights the range and depth of volunteers' contribution to specialist paediatric palliative care services and will help to provide a basis for future research, which could inform expansion of volunteers' roles.
Burbeck R; Low J; Sampson E L; Scott R; Bravery R; Candy B
Bmj Supportive & Palliative Care
2015
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).
10.1136/bmjspcare-2012-000355
Problems And Hopes Perceived By Mothers, Fathers And Physicians Of Children Receiving Palliative Care
Hope; Palliative Therapy; Physician; Problem Solving; Psychology; Adolescent; Child; Decision Making; Father; Female; Human; Human Relation; Infant; Male; Mother; Newborn; Preschool Child; Quality Of Life; Young Adult
BACKGROUND: The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child. OBJECTIVE: (i) Describe the problems and hopes reported by mothers, fathers and physicians of children receiving palliative care; (ii) examine the observed concordance between participants; (iii) examine parental perceived agreement; and (iv) examine whether parents who identified specific problems also specified corresponding hopes, or whether the problems were left 'hopeless'. METHOD: Seventy-one parents and 43 physicians were asked to report problems and hopes and perceived agreement for 50 children receiving palliative care. Problems and hopes were classified into eight domains. Observed concordance was calculated between parents and between each parent and the physicians. RESULTS: The most common problem domains were physical body (88%), quality of life (74%) and medical knowledge (48%). The most common hope domains were quality of life (88%), suffering (76%) and physical body (39%). Overall parental dyads demonstrated a high percentage of concordance (82%) regarding reported problem domains and a lower percentage of concordance on hopes (65%). Concordance between parents and physicians regarding specific children was lower on problem (65-66%) and hope domains (59-63%). Respondents who identified problems regarding a child's quality of life or suffering were likely to also report corresponding hopes in these domains (93 and 82%, respectively). CONCLUSION: Asking parents and physicians to talk about problems and hopes may provide a straightforward means to improve the quality of shared decision making for critically ill children.
Hill D L; Miller V A; Hexem K R; Carroll K W; Faerber J A; Kang T; Feudtner C
Health Expectations
2015
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10.1111/hex.12078
'Why Does It Happen Like This?' Consulting With Users and Providers Prior to an Evaluation of Services for Children with Life Limiting Conditions and their Families
Family; Patient Referral; Rehabilitation; Supply And Distribution; Adolescent; Child; Child Health Care; Handicapped Child; Health Service; Health Services Research; Human; Information Processing; Interview
Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and local professionals to gain a more informed picture of issues affecting them prior to preparing a bid to evaluate services in the area. Multiple methods included focus groups, face-to-face and telephone interviews and participatory activities. Recordings and products from activities were analysed for content to identify areas of relevance and concern. An overarching theme from parents was 'Why does it happen like this?' Services did not seem designed to meet their needs. Whilst children and young people expressed ideas related to quality of environment, services and social life, professionals focused on ways of meeting the families' needs. The theme that linked families' concerns with those of professionals was 'assessing individual needs'. Two questions to be addressed by the evaluation are (1) to what extent are services designed to meet the needs of children and families and (2) to what extent are children, young people and their families consulted about what they need? Consultations with families and service providers encouraged us to continue their involvement as partners in the evaluation.
Hunt A; Brown E; Coad J; Staniszewska S; Hacking S; Chesworth B; Chambers L
Journal Of Child Health Care : For Professionals Working With Children In The Hospital And Community
2015
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<a href="https://doi.org/10.1177/136749351351063">10.1177/1367493513510630</a>
Experiences Of Healthcare Professionals In The Community Dealing With The Spiritual Needs Of Children And Young People With Life-threatening And Life-limiting Conditions And Their Families: Report Of A Workshop
Health Personnel Attitude; Psychology; Religion; Adolescent; Adult; Child; Health Care Personnel; Human; Human Relation; Palliative Therapy; Young Adult
OBJECTIVE: We sought to understand how healthcare professionals (HCP) conceptualise spirituality among seriously ill children and young people (CYP) and their families, and their experiences in dealing with spiritual issues that emerge in practice. METHOD: We analysed thematically presentations and small group discussions with HCP that took place as part of a day-long workshop exploring the place of spirituality in paediatric healthcare. RESULTS: (1) HCP conceptualised spirituality as highly individualised searches for meaning, hope and connectedness to self, others and the world. They saw spirituality within a developmental context. (2) HCP described spiritual concerns that were tied to their own conceptualisations of spirituality, centring on ideas of loss, including loss of hope or meaning. (3) HCP approached spiritual concerns of CYP and families by 'being there' and supporting spiritual enquiry. (4) Challenges to their work included managing hopes of CYP and families in the face of poor prognoses, discussions about miracles and issues with their own faith. Spiritual care was seen as different to other areas of care which HCP felt had a greater prescription in delivery. CONCLUSIONS: The findings underscore the complexity of spirituality in times of illness and the challenges faced in its management. HCP should be alerted to the myriad ways spirituality emerges in serious illness and opportunities for developing confidence in attending to spiritual issues with CYP and families through training. Research should explore with patients, families and HCP how tensions among CYP, autonomy, the maintenance of hope and miracle beliefs are best approached within care.
Llewellyn H; Jones L; Kelly P; Barnes J; O'Gorman B; Craig F; Bluebond-Langner M
Bmj Supportive & Palliative Care
2015
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<a href="https://doi.org/10.1136/bmjspcare-2012-000437" target="_blank" rel="noreferrer"><span class="highlight">10.1136</span>/bmjspcare-2012-000437</a>
The Family's Experience Of The Child And/or Teenager In Palliative Care: Fluctuating Between Hope And Hopelessness In A World Changed By Losses
Bereavement; Family Health; Family/px [psychology]; Hope; Palliative Care; Adolescent; Child; Child Preschool; Female; Humans; Male; Young Adult
OBJECTIVES: to understand the family's experience of the child and/or teenager in palliative care and building a representative theoretical model of the process experienced by the family. METHODOLOGY: for this purpose the Symbolic Interactionism and the Theory Based on Data were used. Fifteen families with kids and/or teenagers in palliative care were interviewed, and data were collected through semi-structured interviews. RESULTS: after the comparative analysis of the data, a substantive theory was formed "fluctuating between hope and hopelessness in a world changed by losses", composed by: "having a life shattered ", "managing the new condition", "recognizing the palliative care" and "relearning how to live". Hope, perseverance and spiritual beliefs are determining factors for the family to continue fighting for the life of their child in a context of uncertainty, anguish and suffering, due to the medical condition of the child. Along the way, the family redefines values and integrates palliative care in their lives. CONCLUSION: staying with the child at home is what was set and kept hope of dreaming about the recovery and support of the child's life, but above all, what takes it away even though temporarily is the possibility of their child's death when staying within the context of the family.
Misko M D; dos Santos M R; Ichikawa C R; de Lima R A; Bousso R
Revista Latino-americana De Enfermagem
2015
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10.1590/0104-1169.0468.2588
On The Child's Own Initiative: Parents Communicate With Their Dying Child About Death
Adolescent; Adult; Attitude To Death; Behavioral Research; Child; Child Behavior; Child Care/psychology; Child Preschool; Female; Humans; Infant; Male; Neoplasms/psychology; Neoplasms/therapy; Palliative Care/psychology; Parent-child Relations; Parents/psychology; Qualitative Research; Sweden; Terminally Ill/psychology
Open and honest communication has been identified as an important factor in providing good palliative care. However, there is no easy solution to if, when, and how parents and a dying child should communicate about death. This article reports how bereaved parents communicated about death with their child, dying from a malignancy. Communication was often initiated by the child and included communication through narratives such as fairy tales and movies and talking more directly about death itself. Parents also reported that their child prepared for death by giving instructions about his or her grave or funeral and giving away toys.
Jalmsell L; Kontio T; Stein M; Henter JI; Kreicbergs U
Death Studies
2015
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DOI: 10.1080/07481187.2014.913086
Understanding Death With Limited Experience In Life: Dying Children's And Adolescents' Understanding Of Their Own Terminal Illness And Death
Adolescent; Attitude To Death; Child; Communication; Fear; Humans; Palliative Care/organization & Administration; Palliative Care/psychology; Professional-family Relations; Prognosis; Terminal Care/organization & Administration; Terminal Care/psychology; Terminally Ill/legislation & Jurisprudence; Terminally Ill/psychology; Time Factors
PURPOSE OF REVIEW: An up-to-date summary of the literature on children's and adolescents' understanding of their own terminal illness and death. RECENT FINDINGS: Clinicians still find it difficult to speak with pediatric patients about death even though guidelines for facilitating communication on the topic exist. As a result, pediatric patients are less likely to develop a clear understanding of their illness and there is a disconnect between clinicians and parents about prognosis, even when clinicians have concluded there is no longer possibility for cure. Insufficient communication and poor understanding may increase the risk of patients feeling isolated, mistrustful and anxious, and deprive them of a role model who can communicate about painful issues or share difficult feelings. Despite these complexities, young people often show remarkable resiliency in the face of death and want to get the most out of the remaining time they have. SUMMARY: In addition to these most recent findings, this review examines the challenges in researching this topic, obstacles to patients receiving information about prognosis, and how physical symptoms affect patients' ability to develop an understanding. It also reviews sources of insight into pediatric patients' understanding including the development of concepts of death, fears about their own death, legal interpretations of what patients understand, and how terminally ill young people continue to treasure life. It concludes by addressing ways clinicians can use the knowledge we have to communicate well with dying children and adolescents and their families.
Bates Alan T; Kearney Julia A
Current Opinion In Supportive And Palliative Care
2015
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10.1097/SPC.0000000000000118
A Longitudinal, Randomized, Controlled Trial Of Advance Care Planning For Teens With Cancer: Anxiety, Depression, Quality Of Life, Advance Directives, Spirituality
Adolescent; Adult; Advance Care Planning/statistics & Numerical Data; Advance Directives/psychology; Advance Directives/statistics & Numerical Data; Anxiety/complications; Anxiety/psychology; Depression/complications; Depression/psychology; Family; Feasibility Studies; Female; Follow-up Studies; Humans; Longitudinal Studies; Male; Neoplasms/complications; Neoplasms/psychology; Patient Satisfaction/statistics & Numerical Data; Quality Of Life/psychology; Spirituality; Surveys And Questionnaires; United States; Young Adult
Adolescent; Advance Care Planning; Advance Directive; African-american; Cancer; Communication; Decision-making; End Of Life; Family Intervention; Pediatric Palliative Care
To test the feasibility, acceptability and safety of a pediatric advance care planning intervention, Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC).
METHODS:
Adolescent (age 14-20 years)/family dyads (N = 30) with a cancer diagnosis participated in a two-armed, randomized, controlled trial. Exclusion criteria included severe depression and impaired mental status. Acceptability was measured by the Satisfaction Questionnaire. General Estimating Equations models assessed the impact of FACE-TC on 3-month post-intervention outcomes as measured by the Pediatric Quality of Life Inventory 4.0 Generic Core Scale, the Pediatric Quality of Life Inventory 4.0 Cancer-Specific Module, the Beck Depression and Anxiety Inventories, the Spiritual Well-Being Scale of the Functional Assessment of Chronic Illness Therapy-IV, and advance directive completion.
RESULTS:
Acceptability was demonstrated with enrollment of 72% of eligible families, 100% attendance at all three sessions, 93% retention at 3-month post-intervention, and 100% data completion. Intervention families rated FACE-TC worthwhile (100%), whereas adolescents' ratings increased over time (65%-82%). Adolescents' anxiety decreased significantly from baseline to 3 months post-intervention in both groups (β = -5.6; p = .0212). Low depressive symptom scores and high quality of life scores were maintained by adolescents in both groups. Advance directives were located easily in medical records (100% of FACE-TC adolescents vs. no controls). Oncologists received electronic copies. Total Spirituality scores (β = 8.1; p = .0296) were significantly higher among FACE-TC adolescents versus controls. The FACE-TC adolescents endorsed the best time to bring up end-of-life decisions: 19% before being sick, 19% at diagnosis, none when first ill or hospitalized, 25% when dying, and 38% for all of the above.
CONCLUSIONS:
Family-Centered Advance Care Planning for Teens With Cancer demonstrated feasibility and acceptability. Courageous adolescents willingly participated in highly structured, in-depth pediatric advance care planning conversations safely.
M.E. Lyon; Wang J
Journal Of Adolescent Health
2014
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DOI: 10.1016/j.jadohealth.2013.10.206
Resilience And Death: The Nursing Professional In The Care Of Children And Adolescents With Life-limiting Illnesses
Adaptation Psychological; Adolescent; Attitude Of Health Personnel; Attitude To Death; Child; Chronic Disease; Humans; Nurses; Pediatric Nursing; Resilience Psychological; Terminal Care
The purpose of this article is to analyze the resilience of the nursing staff in providing care for children and adolescents with chronic diseases, including coping with their deaths. The participants of this qualitative research were nursing professionals working in the pediatric ward of a hospital in the city of Rio de Janeiro, Brazil. The data collection was obtained by applying the resilience scale, by returning the scales in groups, and by semi-structured interviews. The relationship between professional resilience and coping with the process of children and adolescent's deaths stood out in the analysis based on data obtained from group and individual interviews. The care given to children and adolescents with life-limiting illnesses triggers resilience-related answers concerning alternatives that oscillate between individual reactions (religious and psychological support), and the search for an incipient collective support based on personal relationships. This study points out that this subject must be strategically handled to train this professional, who must be able to rely on support from the collective environment, presumed within the professional health care training and in the management of humanization at the hospital.
dos Santos Rosilene Aparecida; Moreira Martha Cristina Nunes
Ciencia & Saude Coletiva
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).
End- Of- Life Decisions And Minors: Do Minors Have The Right To Refuse Life Preserving Medical Treatment? A Comparative Study
Decision Making; Minors/lj [legislation & Jurisprudence]; Treatment Refusal/lj [legislation & Jurisprudence]; Adolescent; Canada; Child; Europe; Humans; Informed Consent/lj [legislation & Jurisprudence]; Terminally Ill/lj [legislation & Jurisprudence]; Treatment Refusal; United States
The principles of the right to informed consent and informed refusal are quite clear for competent adult patients. The right of a competent adult patient to give his informed consent before medical treatment can be started, is a patients' right that is recognised all over the world. The logical corollary of the right to informed consent is the right to informed refusal. A competent adult patient also has the right to refuse medical treatment by simply withholding or withdrawing his consent. A physician who starts medical treatment without the informed consent of his patient will be held liable for battery. Can these same principles be applied to minors? In other words: do minors also have the right to refuse medical treatment? Can a minor refuse even life preserving care? The interests of the involved parties (minor, parents and state) have to be weighed against each other case by case. A thorough examination of the available case law shows that the best interests of the minor are paramount. This "best interests" standard guides judges in their making of a decision. However, this is certainly not always in accordance with reality. In fact, minors can be mature enough to refuse treatment at a much earlier time than the age of legal majority, whatever the consequences of that refusal may be.
Lemmens C
Medicine & Law
2009
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).
Key Factors Affecting Dying Children And Their Families
Bereavement; Family/px [psychology]; Palliative Care/st [standards]; Professional-family Relations; Quality Of Health Care; Terminal Care/st [standards]; Adolescent; Bereavement; Child; Communication; Decision Making; Humans; Only Child; Stress Psychological/et [etiology]; Terminal Care
The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships, and may be the basis for health care providers' decisions to exit direct care roles. Thus, facilitating a "good death"-an obvious care priority for all involved with the dying child-ought also to be a priority for the health of bereaved families and affected health care providers. Making this a care priority is complicated by a serious lack of data, as details of the last hours or weeks of a dying child or adolescent's life are largely unknown. The purpose of this paper is to identify key factors that affect the course of dying children and adolescents and that of their bereaved survivors, and to link those key factors to needed research that could produce clinically relevant findings to improve the care of these patients. Key factors described here include suffering (physical, psychological, and spiritual), communication, decision making, prognostic ambiguities, ability of the seriously ill child to give assent to research participation, and educational preparation of health care providers to give competent end-of-life care. [References: 75]
Hinds PS; Schum L; Baker J; Wolfe J
Journal Of Palliative Medicine
2005
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).
10.1089/jpm.2005.8.s-70
End-of-life Practices Among Tertiary Care Picus In The United States: A Multicenter Study
Adolescent;Cause Of Death;Child;Child Preschool;Female;Hospital Mortality;Humans;Infant;Intensive Care Units Pediatric;Length Of Stay;Male;Practice Patterns Physicians';Prospective Studies;Terminal Care/methods;Terminal Care/statistics & Numerical Data;Tertiary Healthcare;Tissue And Organ Procurement/statistics & Numerical Data;United States
OBJECTIVE: To describe variability in end-of-life practices among tertiary care PICUs in the United States. DESIGN: Secondary analysis of data prospectively collected from a random sample of patients (n = 10,078) admitted to PICUs affiliated with the Collaborative Pediatric Critical Care Research Network between December 4, 2011, and April 7, 2013. SETTING: Seven clinical centers affiliated with the Collaborative Pediatric Critical Care Research Network. PATIENTS: Patients included in the primary study were less than 18 years old, admitted to a PICU, and not moribund on PICU admission. Patients included in the secondary analysis were those who died during their hospital stay. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Two hundred and seventy-five (2.7%; range across sites, 1.3-5.0%) patients died during their hospital stay; of these, 252 (92%; 76-100%) died in a PICU. Discussions with families about limitation or withdrawal of support occurred during the initial PICU stay for 173 patients (63%; 47-76%; p = 0.27) who died. Of these, palliative care was consulted for 67 (39%; 12-46%); pain service for 11 (6%; 10 of which were at a single site); and ethics committee for six (3%, from three sites). Mode of death was withdrawal of support for 141 (51%; 42-59%), failed cardiopulmonary resuscitation for 53 (19%; 12-28%), limitation of support for 46 (17%; 7-24%), and brain death for 35 (13%; 8-20%); mode of death did not differ across sites (p = 0.58). Organ donation was requested from 101 families (37%; 17-88%; p < 0.001). Of these, 20 donated (20%; 0-64%). Sixty-two deaths (23%; 10-53%; p < 0.001) were medical examiner cases. Of nonmedical examiner cases (n = 213), autopsy was requested for 79 (37%; 17-75%; p < 0.001). Of autopsies requested, 53 (67%; 50-100%) were performed. CONCLUSIONS: Most deaths in Collaborative Pediatric Critical Care Research Network-affiliated PICUs occur after life support has been limited or withdrawn. Wide practice variation exists in requests for organ donation and autopsy.
Meert KL; Keele L; Morrison W; Berg RA; Dalton H; Newth CJL; Harrison R; Wessel DL; Shanley T; Carcillo J; Clark A; Holubkov R; Jenkins T L; Doctor A; Dean JM; Pollack M
Pediatric Critical Care Medicine
2015
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).
10.1097/PCC.0000000000000520
Consistency in end of life care
Adolescent; Child; Child Preschool; Communication; Decision Making; Hospice And Palliative Care Nursing/ Standards; Humans; Infant; Nurse-patient Relations; Patient Participation; Pediatric Nursing/ Standards; Practice Guidelines As Topic
Draft guidelines address regional variations, but there are worries over terminology, the needs of family members and implementation. The death of a child is a comparatively rare event in the UK. Even so, more than 3,000 infant and 2,000 children and young people age 1-19 years died in England and Wales in 2012.
Allen D
Nursing Children And Young People
2016
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://journals.rcni.com/doi/full/10.7748/ncyp.28.8.8.s8" target="_blank" rel="noreferrer">10.7748/ncyp.28.8.8.s8</a>
How holistic nursing can enhance the quality of life of children with cystic fibrosis
Adolescent; Child Health; Cystic Fibrosis; Cystic Fibrosis/ Nursing/psychology; Family/psychology; Female; Holistic Nursing/ Methods; Humans; Life-limiting Illness; Paediatrics; Quality Of Life; Respiratory System; Siblings/psychology; Well-being
Cystic fibrosis (CF) is one of the most common life-limiting genetic conditions. Ellen Bolton (not her real name) is a teenager with one of the rarer presentations of CF. This case study explores the experiences of Ellen and her family. It discusses the effects of CF on the patient and her family, and how it affects their quality of life (QoL) and well-being.
Tointon K; Hunt J
Nursing Children And Young People
2016
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://dx.doi.org/10.7748/ncyp.2016.e753" target="_blank" rel="noreferrer"><span>http://dx.doi.org/</span><span>10.7748</span><span>/</span><span>ncyp</span><span>.</span><span>2016</span><span>.</span><span>e753</span></a>
Children with life-shortening conditions are denied the support they need, says charity
Healthcare Financing; Palliative Care; Respite Care; Adolescent; Charities; Child; Child Preschool; England; Hospice And Palliative Care Nursing; Humans; Infant; Infant Newborn; State Medicine; Young Adult
Children who require palliative care are being 'short changed or ignored', according to a survey of services in England by the charity Together for Short Lives.
[No authors listed]
Nursing Children And Young People
2016
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).
<span><span></span><span><a href="https://doi.org/10.7748/ncyp.28.7.7.s6">10.7748/ncyp.28.7.7.s6</a></span></span><span><span><br /></span></span>
Psychosocial Health Outcomes for Family Caregivers Following the First Year of Bereavement
Bereavement; Adolescent; Adult; Aged; Caregivers/ Psychology; Depression/epidemiology/etiology; Health Status; Humans; Middle Aged; Psychiatric Status Rating Scales; Psychological Tests; Psychology; Social Adjustment; Spouses/psychology; Stress Psychological/epidemiology; Stress Psychological/etiology; Time Factors; Young Adult
The authors examined psychosocial outcomes following the first year of bereavement, for 51 family caregivers, including both spouses and offspring. Researchers assessed caregivers during palliative care and again during the second year of bereavement, for social functioning, depression, and distress. For all family caregivers, only depression scores declined significantly between T1 and T2 (p < 0.05). Caregiver relationship and gender did not make a difference in recovery. Results demonstrate that poor psychosocial health outcomes exist beyond the first year of bereavement. Early identification of these caregivers is necessary to provide mental health professionals the opportunity to intervene proactively.
Masterson MP; Hurley KE; Zaider T; Corner G; Schuler T; Kissane DW
Death Studies
2015
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://doi.org/10.1080/07481187.2014.985406">10.1080/07481187.2014.985406</a>
The Impact of Mortality on Total Costs Within the ICU
Hospital Mortality; Adolescent; Adult; Aged; Aged 80 And Over; Age Factors; Bed Occupancy/economics; Female; Hospital Costs/ Statistics & Numerical Data; Humans; Intensive Care Units/ Economics; Length Of Stay/economics; Male; Middle Aged; Patient Discharge/economics; Respiration Artificial/economics; Retrospective Studies; Severity Of Illness Index; Sex Factors; United States; Young Adult
OBJECTIVES: The high cost of critical care has engendered research into identifying influential factors. However, existing studies have not considered patient vital status at ICU discharge. This study sought to determine the effect of mortality upon the total cost of an ICU stay. DESIGN: Retrospective cohort study. SETTING: Twenty-six ICUs at 13 hospitals in the United States. PATIENTS: 58,344 admissions from January 1, 2012, to June 30, 2016, obtained from a commercial ICU database. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The median observed cost of a unit stay was $9,619 (mean = $16,353). A multivariable regression model was developed on the log of total costs for a unit stay, using severity of illness, unit admitting diagnosis, mortality in the unit, daily unit occupancy (occupying a bed at midnight), and length of mechanical ventilation. This model had an r of 0.67 and a median difference between observed and expected costs of $437. The first few days of care and the first day receiving mechanical ventilation had the largest effect on total costs. Patients dying before unit discharge had 12.4% greater costs than survivors (p < 0.01; 99% CI = 9.3-15.5%) after multivariable adjustment. This effect was most pronounced for patients with an extended ICU stay who were receiving mechanical ventilation. CONCLUSIONS: While the largest drivers of ICU costs at the patient level are day 1 room occupancy and day 1 mechanical ventilation, mortality before unit discharge is associated with substantially higher costs. The increase was most evident for patients with an extended ICU stay who were receiving mechanical ventilation. Studies evaluating costs among ICUs need to take mortality into account.
Kramer AA; Dasta JF; Kane-Gill SL
Critical Care Medicine
2017
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).
10.1097/ccm.0000000000002563