Looking back: Identifying supportive care and unmet needs of parents of children receiving specialist paediatric palliative care from the bereavement perspective
Children; Humans; Parents/psychology; Parents; Child; Cancer; Palliative Care/psychology; Palliative care; Grief; Bereavement; Supportive care needs; Neoplasms/psychology; Fin-ped ii; Support services
BACKGROUND: This study examined care needs and utilisation of psychosocial support services among parents of children who had received specialist paediatric palliative care, as well as the relationship between need fulfilment and grief. Possible differences between parents of children who died of cancer versus a non-cancer disease were explored. METHODS: This exploratory study, conducted in two specialist paediatric palliative care facilities, included parents who had lost a child within a period of 0.5 to 8 years before this investigation. From the bereavement perspective, parents reported their needs during paediatric palliative care using the Family Inventory of Needs - Peadiatric II (FIN-PED II). Utilisation of psychosocial support services during paediatric palliative care and after the child's death, as well as potential barriers to accessing services were assessed. Grief symptoms were measured using the Inventory of Complicated Grief - German Version (ICG-D). RESULTS: Overall, 56 of 157 approached parents participated in the study. Mean time interval after the child's death was 3.2 years. Of the 17 FIN-PED II needs, 13 needs were reported to be very/extremely important to more than 75% of the parents each. Highest ranked needs related to asking questions at any time (100%), sincere care for the child (100%), and information about changes in the child's condition (98%). The highest ranked unmet needs related to hope (61%), interactions with siblings (41-42%), and trust in the health care system (39%). Comparisons showed no significant differences between parents whose child died of cancer (n = 18) versus a non-cancer disease (n = 38). During paediatric palliative care, 61% of the parents had accessed at least one psychosocial support service and 84% had done so after the child's death. The most prominent barriers for accessing services were sufficient informal support (38%), no subjective need (23%), and lack of time (20%). Overall, 52% of the parents showed noticeable symptoms for complicated grief (ICG-D > 25). A higher level of grief symptoms significantly correlated with a lower fulfilment of the need to say goodbye to the child (p = .042) with a medium correlational effect. CONCLUSIONS: Our findings may help to guide health care professionals in their assessment of parental needs and provision of support to parents during paediatric palliative care.
Bronsema A; Theißen T; Oechsle K; Wikert J; Escherich G; Rutkowski S; Bokemeyer C; Ullrich A
BMC Palliative Care
2022
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/10.1186/s12904-022-00971-y" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-00971-y</a>
Adding Life to Their Years: The Current State of Pediatric Palliative Care in CKD
Adult; Child; chronic kidney disease; dialysis; end stage kidney disease; geriatric and palliative nephrology; Hospice and Palliative Care Nursing; Humans; kidney supportive care; Nephrology; Palliative Care/psychology; pediatric nephrology; pediatric palliative care; Quality of Life; Renal Insufficiency Chronic/therapy
Despite continued advances in medical treatment, pediatric CKD remains an unremitting, burdensome condition characterized by decreased quality of life and earlier death. These burdens underscore the need for integration of pediatric palliative care (PPC) into nephrology practice. PPC is an evolving field that strives to (1) relieve physical, psychologic, social, practical, and existential suffering; (2) improve quality of life; (3) facilitate decision making; and (4) assist with care coordination in children with life-threatening or life-shortening conditions. Integration of palliative care into routine care has already begun for adults with kidney disease and children with other chronic diseases; however, similar integration has not occurred in pediatric nephrology. This review serves to provide a comprehensive definition of PPC, highlight the unmet need in pediatric nephrology and current integration efforts, discuss the state of palliative care in adult nephrology and analogous chronic pediatric disease states, and introduce future opportunities for study.
House TR; Wightman A
Kidney360
2021
<a href="http://doi.org/10.34067/kid.0000282021" target="_blank" rel="noreferrer noopener">10.34067/kid.0000282021</a>
Making room for life and death at the same time - a qualitative study of health and social care professionals' understanding and use of the concept of paediatric palliative care
Alleviation; Child; Concept; Health care professionals; Hospice and Palliative Care Nursing; Humans; Life limiting; Paediatric; Palliative care; Palliative Care/psychology; Pediatric; Ppc; Qualitative Research; Quality of Life; Social Support; Terminal care
BACKGROUND: The concept of pediatric palliative care (PPC) is applied differently within the healthcare system and among healthcare professionals (HCPs). To our knowledge, no studies have investigated how multidisciplinary HCPs understand the concept of PPC and the aim of this study was to explore the concept of PPC from the view of HCP in a paediatric setting. METHODS: We employed an explorative and descriptive design and conducted four focus groups with a total of 21 HCPs working in hospitals with children in palliative care. The data were analysed using qualitative content analysis. RESULTS: The data analysis of the concept of pediatric palliative care resulted in two themes. The first theme "A frightening concept that evokes negative emotions," contains categories to explore the meaning, named "An unfamiliar and not meaningful concept, "A concept still associated with death and dying" and "Healthcare professionals' responsibility for introducing and using the concept and, to obtain a common meaning." The second theme was named "A broad and complementary concept," containing the categories "Total care for the child and the family," "Making room for life and death at the same time" and "The meaning of alleviation and palliative care." CONCLUSIONS: The included HCPs reflected differently around PPC but most of them highlighted quality of life, total care for the child and the child's family and interdisciplinary collaboration as core elements. Attention to and knowledge among HCPs might change the perception about PPC from a frightening concept to one that is accepted by all parties, implemented in practice and used as intended. However, our study reveals that there is still some work to do before PPC is understood and accepted by all those involved.
Winger A; Früh EA; Holmen H; Kvarme LG; Lee A; Lorentsen VB; Misvær N; Riiser K; Steindal SA
BMC Palliative Care
2022
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/10.1186/s12904-022-00933-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-00933-4</a>
Parents' experiences of pediatric palliative care and the impact on long-term parental grief.
Cross-Sectional Studies; Female; Humans; Male; Palliative Care; Adult; Middle Aged; Communication; Multivariate Analysis; Continuity of Patient Care; Children; retrospective studies; Neoplasms/therapy; cancer; Grief; Parents/psychology; Pediatrics; Palliative Care/psychology; parental grief; Surveys and Questionnaires; symptom management
CONTEXT: Approximately 25% of children diagnosed with cancer eventually die. Losing a child puts parents at increased risk for developing psychological problems. OBJECTIVES: To explore parents' perceptions of the interaction with health care professionals (communication, continuity of care, and parental involvement) and symptom management during the pediatric palliative phase, and to investigate the influence on long-term grief in parents who lost a child to cancer. METHODS: A total of 89 parents of 57 children who died of cancer between 2000 and 2004 participated in this retrospective cross-sectional study by completing a set of questionnaires measuring grief (Inventory of Traumatic Grief), parents' perceptions of the interaction with health care professionals (communication, continuity of care, and parental involvement), and symptom management during the palliative phase. Care was assessed on a five point Likert scale (1=disagree and 5=agree). RESULTS: Parents highly rated communication (4.6+/-0.6), continuity of care (4.3+/-0.6), and parental involvement (4.6+/-0.7) during the palliative phase. Parents' most often reported physical and psychological symptoms of their child during the palliative phase were fatigue (75%), pain (74%), anxiety to be alone (52%), and anger (48%). Higher ratings of parents on communication (beta=-9.08, P=0.03) and continuity of care (beta=-11.74, P=0.01) were associated with lower levels of long-term parental grief. The severity of the child's dyspnea (beta=2.96, P=0.05), anxiety to be alone (beta=4.52, P<0.01), anxiety about the future (beta=5.02, P<0.01), anger (beta=4.90, P<0.01), and uncontrolled pain (beta=6.60, P<0.01) were associated with higher levels of long-term parental grief. Multivariate models combining the interaction with health care professionals and symptom management showed a significant influence of both aspects on long-term parental grief. CONCLUSION: Both interaction with health care professionals, especially communication and continuity of care, and symptom management in children dying of cancer are associated with long-term parental grief levels.
2014-06
van der Geest IMM; Darlington Anne-Sophie E; Streng IC; Michiels EMC; Pieters R; van den Heuvel-Eibrink MM
Journal Of Pain And Symptom Management
2014
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Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2013.07.007" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2013.07.007</a>
The lived experience of physicians dealing with patient death.
Female; Humans; Male; Terminal Care; Adult; Emotions; Middle Aged; Communication; Attitude to Death; Palliative Care/psychology; Physician-Patient Relations; Attitude of Health Personnel; Clinical encounter; Psychological care; Terminal Care/psychology
BACKGROUND: A growing body of research indicates that physicians suffer high levels of stress, depression and burnout. Related literature has found that physician stress can negatively impact patient care. This study builds upon previous research that found some dying patients experienced 'iatrogenic suffering' caused by the way physicians communicated with them regarding terminal diagnoses and palliative treatment. The goal of this research was to explore physicians' experiences of dealing with patient death in order to understand how such experiences affect them and their communication with patients. METHODS: This study used qualitative methods to conduct and analyse 10 individual, semistructured interviews with senior physicians from several specialty areas at a large, tertiary care hospital. The resulting themes were validated using member checks and expert review. RESULTS: This article presents five essential themes that provide a concise description of the lived experience of patient death for these physicians. INTERPRETATION: These themes indicate that physicians can experience very strong and lasting emotional reactions to some patient deaths, and also that patient death can elicit intense experiences related to professional responsibility and competence. A key finding is the description of a complex process of managing the balance between personal and professional reactions in the face of patient death. The implication is that difficulties negotiating this balance may lead to unintended lapses in compassion and suboptimal outcomes in patient care.
2014-09
Whitehead PR
Bmj Supportive & Palliative Care
2014
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Journal Article
<a href="http://doi.org/10.1136/bmjspcare-2012-000326" target="_blank" rel="noreferrer">10.1136/bmjspcare-2012-000326</a>
Parental explicit heuristics in decision-making for children with life-threatening illnesses
Child; Female; Humans; Male; Young Adult; Cohort Studies; Prospective Studies; Professional-Family Relations; Communication; Choice Behavior; Problem Solving; Hospitals; Pediatric; adolescent; Preschool; Psychological; decision making; infant; Parents/psychology; Palliative Care/psychology; Philadelphia; Parent caregivers; Chronic Disease/psychology/therapy; Interview; Judgment; Aphorisms and Proverbs as Topic; Critical Illness/psychology/therapy
OBJECTIVE: To identify and illustrate common explicit heuristics (decision-making aids or shortcuts expressed verbally as terse rules of thumb, aphorisms, maxims, or mantras and intended to convey a compelling truth or guiding principle) used by parents of children with life-threatening illnesses when confronting and making medical decisions. METHODS: Prospective cross-sectional observational study of 69 parents of 46 children who participated in the Decision-making in Pediatric Palliative Care Study between 2006 and 2008 at the Children's Hospital of Philadelphia. Parents were guided individually through a semistructured in-depth interview about their experiences and thoughts regarding making medical decisions on behalf of their ill children, and the transcribed interviews were qualitatively analyzed. RESULTS: All parents in our study employed explicit heuristics in interviews about decision-making for their children, with the number of identified explicit heuristics used by an individual parent ranging from tens to hundreds. The heuristics served 5 general functions: (1) to depict or facilitate understanding of a complex situation; (2) to clarify, organize, and focus pertinent information and values; (3) to serve as a decision-making compass; (4) to communicate with others about a complex topic; and (5) to justify a choice. CONCLUSIONS: Explicit heuristics played an important role in decision-making and communication about decision-making in our population of parents. Recognizing explicit heuristics in parent interactions and understanding their content and functions can aid clinicians in their efforts to partner with parents in the decision-making process.
Renjilian CB; Womer JW; Carroll KW; Kang T; Feudtner C
Pediatrics
2013
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Journal Article
<a href="http://doi.org/10.1542/peds.2012-1957" target="_blank" rel="noreferrer">10.1542/peds.2012-1957</a>
A Qualitative Investigation of Fathers' Experiences of Looking After a Child with a Life-Limiting Illness, In Process and In Retrospect
Child; Female; Humans; Male; Grief; Adult; Attitude to Death; Professional-Family Relations; Life Change Events; Adaptation; Psychological; Caregivers/psychology; Palliative Care/psychology; social support; Gender Identity; Interview; Chronic Disease/psychology; Terminal Care/psychology; Marriage/psychology; Home Nursing/psychology; Fathers/psychology; father experience; Father-Child Relations
Child life-limiting illnesses are those from which there is no reasonable hope of cure and from which children will die. Only recently have these illnesses been recognized as a discrete category and thus relatively little research has focused specifically upon this group of children and their families. This study utilized qualitative methods to investigate the experience of fathers, a group who are often under-represented in child illness research. The research aim was to gain an understanding of fathers' experiences of having a child with a life-limiting illness, its impact upon them, and their perceptions of service provision. The data from eight interviews was analysed using Interpretative Phenomenological Analysis. Four main themes emerged highlighting the fathers' feeling that their world had been turned upside down, how they lived with the knowledge their child would die, how men perceive themselves as different from women, and the fathers' wish to contribute to changing and improving how other fathers might cope with a child with a life-limiting illness. The results are discussed particularly in relation to gender issues. Various implications for clinical practice and service provision are considered. Suggestions are also made for future research.
2007
Ware J; Raval H
Clinical Child Psychology And Psychiatry
2007
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Journal Article
<a href="http://doi.org/10.1177/1359104507080981" target="_blank" rel="noreferrer noopener">10.1177/1359104507080981</a>
Disease trajectories and ACT/RCPCH categories in paediatric palliative care
Child; Female; Humans; Male; Palliative Care; Family; Attitude to Health; Interviews as Topic; Professional-Family Relations; Disease Progression; caregivers; Qualitative Research; Focus Groups; Wales; Caregivers/psychology; Family/psychology; PEDI Study; Palliative Care/psychology; Attitude to Health; Disease Progression
The objective of this study was to provide a preliminary description of trajectories of life-limiting conditions (LLCs) using qualitative experiential data. Semi-structured interviews were conducted with families of children with LLCs, selected to encompass all Association for Children's Palliative Care (ACT)/Royal College of Paediatrics and Child Health (RCPCH) categories, using a schedule developed from focus groups of professionals. Thirty out of 76 families agreed to participate. Four of these were unsuitable. In nine out of 26 families, their child had died. In eight out of the 26, two individuals were interviewed. Twenty-four mothers, nine fathers, one sibling and two foster-carers were interviewed in total. The interview schedule was developed from data from four themed focus groups, comprising 25 professionals from 14 backgrounds. Thirty-four milestones in five phases were identified: Diagnosis, Loss of normality, Adjusting to new normality, Palliative phase and Death. Many milestones were common to all categories, suggesting that the ACT/RCPCH system encompasses related conditions. Others occurred in only some, suggesting trajectories in the categories are distinct. Significant themes emerging from qualitative data were: becoming expert in their child, concerns about service provision, information needs and relationships with health professionals. By presenting qualitative descriptive data regarding the lived experience of families of children with LLCs, this study provides preliminary evidence that the ACT/RCPCH categories are suitable tools for research and service development.;
2010-12
Wood F; Simpson S; Barnes E; Hain R
Palliative Medicine
2010
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Journal Article
Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations
Child; Humans; infant; Parent-Child Relations; Questionnaires; Professional-Family Relations; Communication; Pediatric; adolescent; Preschool; Non-U.S. Gov't; Research Support; PedPal Lit; decision making; infant; Newborn; Parents/psychology; Intensive Care Units; Palliative Care/psychology; Terminal Care/psychology
OBJECTIVE: Despite recognition that dying children and their families have unique palliative care needs, there has been little empirical inquiry of parent perspectives to improve the quality of end-of-life care and communication. The purpose of this study was to identify and describe the priorities and recommendations for end-of-life care and communication from the parents' perspective. METHODS: This was a qualitative study based on parental responses to open-ended questions on anonymous, self-administered questionnaires, conducted at 3 pediatric ICUs in Boston, Massachusetts. Fifty-six parents whose children had died in PICUs after withdrawal of life support participated in this study. We measured parent-identified priorities for end-of-life care and communication. RESULTS: Parents identified 6 priorities for pediatric end-of-life care including honest and complete information, ready access to staff, communication and care coordination, emotional expression and support by staff, preservation of the integrity of the parent-child relationship, and faith. CONCLUSIONS: Parental priorities and recommendations offer simple yet compelling guidance to improve pediatric end-of-life clinical practice and research.
2006
Meyer EC; Ritholz MD; Burns JP; Truog RD
Pediatrics
2006
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Journal Article
At the crossroads: making the transition to hospice
Female; Humans; Male; Adult; Parent-Child Relations; Interpersonal Relations; Questionnaires; Aged; Middle Aged; Family Relations; Non-U.S. Gov't; Research Support; U.S. Gov't; Caregivers/psychology; decision making; Connecticut; Palliative Care/psychology; Narration; Hospice Care/psychology; Neoplasms/nursing; Non-P.H.S.
OBJECTIVE: Previous studies reveal that many terminally ill patients never receive hospice care. Among those who do receive hospice, many enroll very close to the time of death. Nationally, between 1992 and 1998, the median length of stay at hospice declined 27%, from 26 to 19 days. In our prior study of 206 patients diagnosed with terminal cancer and using hospice, we found that one-third enrolled with hospice within 1 week prior to death. Late hospice enrollment can have deleterious effects on patients and their family members. The aim of the present study was to characterize common experiences of patients and primary family caregivers as they transition to hospice, focusing on caregiver perceptions of factors that might contribute to delays in hospice enrollment. METHODS: We conducted in-depth interviews with a purposive sample of 12 caregivers selected from a population of primary family caregivers of patients with terminal cancer who enrolled with hospice in Connecticut between September 2000 and September 2001. Respondents represented different ages, genders, and kinship relationships with patients. Respondents were asked about the patient's care trajectory, how they first learned about hospice, and their experiences as they transitioned to hospice. NUD*IST software was used for qualitative data coding and analysis. RESULTS: Constant comparative analysis identified three themes common to the experience of transitioning to hospice: (1) caregivers' acceptance of the impending death, (2) challenges in negotiating the health care system across the continuum of care, and (3) changing patient-family dynamics. SIGNIFICANCE OF RESULTS: Identification of these themes from the caregivers' perspective generates hypotheses about potential delays in hospice and may ultimately be useful in the design of interventions that are consistent with caregivers' needs.
2004
Schulman-Green D; McCorkle R; Curry L; Cherlin E; Johnson-Hurzeler R; Bradley E
Palliative & Supportive Care
2004
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Journal Article
<a href="http://doi.org/10.1017/s1478951504040477" target="_blank" rel="noreferrer">10.1017/s1478951504040477</a>
Issues in end-of-life care: patient, caregiver, and clinician perceptions
Female; Humans; Male; Cohort Studies; Adult; Attitude of Health Personnel; Interpersonal Relations; Aged; Middle Aged; Attitude to Death; Physicians; Qualitative Research; Quality of Health Care; Cost of Illness; Washington; 80 and over; Non-U.S. Gov't; Research Support; Caregivers/psychology; Interviews; Family/psychology; Palliative Care/psychology; Terminal Care/psychology; Patients/psychology
CONTEXT: Review of published research indicates the need to better incorporate patient and caregiver perceptions when providing end-of-life (EOL) care. Although considerable research regarding patient and caregiver experience of EOL has been done, little research has studied patients, caregivers, and clinicians as a connected system. OBJECTIVE: To study the perceptions of patients, caregivers, and physicians who are already connected with one another in an EOL care experience. DESIGN: Qualitative study consisting of in-depth, open-ended, face-to-face interviews and content analysis. SETTING: Community family practice residency programs in rural and urban settings in the Affiliated Family Practice Residency Network of the Department of Family Medicine, University of Washington School of Medicine. PARTICIPANTS: Forty-two patients and 39 caregivers facing EOL were interviewed either alone or together after referral by their physicians. Additionally, results of previously published findings from interviews with 39 family practice faculty were included. OUTCOME MEASURES: Perceptions of participants on EOL issues. RESULTS: Participants identified four primary issues related to their experience of EOL care: awareness of impending death, management/coping with daily living while attempting to maintain the management regimen, relationship fluctuations, and the personal experiences associated with facing EOL. Participants expected their physicians to be competent and to provide a caring relationship. CONCLUSIONS: Awareness of these crucial patient and caregiver EOL issues and expectations and how they differ from clinician perspectives can assist clinicians to appropriately explore and address patient/caregiver concerns and thereby provide better quality EOL care.
2003
Farber SJ; Egnew TR; Herman-Bertsch JL; Taylor TR; Guldin GE
Journal Of Palliative Medicine
2003
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Journal Article
<a href="http://doi.org/10.1089/10966210360510082" target="_blank" rel="noreferrer">10.1089/10966210360510082</a>
Relationship between three palliative care outcome scales
Female; Hospitalization; Humans; Male; Adult; England; Questionnaires; Aged; Middle Aged; Socioeconomic Factors; Psychometrics; Sickness Impact Profile; 80 and over; Adaptation; Psychological; Caregivers/psychology; Family/psychology; Palliative Care/psychology; Quality of Life/psychology; home care services; Neoplasms/physiopathology/psychology/therapy; Outcome Assessment (Health Care)/methods
BACKGROUND: Various scales have been used to assess palliative outcomes. But measurement can still be problematic and core components of measures have not been identified. This study aimed to determine the relationships between, and factorial structure of, three widely used scales among advanced cancer patients. METHODS: Patients were recruited who received home or hospital palliative care services in the south of England. Hope, quality of life and palliative outcomes were assessed by patients in face to face interviews, using three previously established scales - a generic measure (EQoL), a palliative care specific measure (POS) and a measure of hope (Herth Hope Index). Analysis comprised: exploratory factor analysis of each individual scale, and all scales combined, and confirmatory factor analysis for model building and validation. RESULTS: Of 171 patients identified, 140 (81%) consented and completed first interviews; mean age was 71 years, 54% were women, 132 had cancer. In exploratory analysis of individual means, three out of the five factors in the EQoL explained 75% of its variability, four out of the 10 factors in POS explained 63% of its variability, and in the Hope Index, nine out of the 12 items explained 69% of its variability. When exploring the relative factorial structure of all three scales, five factors explained 56% of total combined variability. Confirmatory analysis reduced this to a model with four factors - self-sufficiency, positivity, symptoms and spiritual. Removal of the spiritual factor left a model with an improved goodness of fit and a measure with 11 items. CONCLUSION: We identified three factors which are important outcomes and would be simple to measure in clinical practice and research.
2004
Higginson IJ; Donaldson N
Health And Quality Of Life Outcomes
2004
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Journal Article
<a href="http://doi.org/10.1186/1477-7525-2-68" target="_blank" rel="noreferrer">10.1186/1477-7525-2-68</a>
Exploring documentation of end-of-life care of children with cancer
Child; Female; Male; Disease Progression; Child Psychology; Medical Records; adolescent; Preschool; infant; Palliative Care/psychology; Human; Terminal Care/psychology; Neoplasms/nursing
This article presents the findings of a study that explored documentation surrounding the end-of-life care of children with cancer. An in-depth history audit of 18 children with cancer, who died from disease progression at a single tertiary paediatric centre during 1999, was performed to explore the extent and the ways in which the shift from cure to palliation was reflected in the child's medical record. The study found that while physical aspects of care were documented there was little evidence of the human-to-human aspects of care or processes of decision-making when cure was no longer a possibility. Relapse and disease progression were identified as critical junctures for families and health professionals and an important area for future research. Further, the medical records documented ill-defined periods of palliation, with the child's approaching death appearing as a gradual awareness rather than a distinct shift in goals of care from cure to palliation.
2002
De Graves SD; Aranda S
International Journal Of Palliative Nursing
2002
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Journal Article
Helping a child to live whilst dying
Child; Female; Grief; Attitude of Health Personnel; Attitude to Death; Child Psychology; Parents/psychology; Palliative Care/psychology; Human; Case Report; Pain/drug therapy; Neoplasm Metastasis; Terminal Care/psychology; Hospitalized/psychology; Brachial Plexus; Hospital Units/standards; Sarcoma/drug therapy/radiotherapy
1980
Chapman JA; Goodall J
Lancet
1980
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Journal Article
Comfort care for terminally ill patients. The appropriate use of nutrition and hydration
Female; Humans; Male; Withholding Treatment; Prospective Studies; Aged; Middle Aged; New York; Risk Assessment; Fluid Therapy; Parenteral Nutrition; quality of life; 80 and over; Empirical Approach; Death and Euthanasia; Hunger; Nursing Homes/standards; Nutrition; NY); Palliative Care/psychology; Psychological; St. John's Home (Rochester; Stress; Terminal Care/methods/psychology/standards; Thirst; Xerostomia/therapy
OBJECTIVE--To determine the frequency of symptoms of hunger and thirst in a group of terminally ill patients and determine whether these symptoms could be palliated without forced feeding, forced hydration, or parenteral alimentation. DESIGN--Prospective evaluation of consecutively admitted terminally ill patients treated in a comfort care unit. SETTING--Ten-bed comfort care unit in a 471-bed long-term care facility. PARTICIPANTS--Mentally aware, competent patients with terminal illnesses monitored from time of admission to time of death while residing in the comfort care unit. MAIN OUTCOME MEASURES--Symptoms of hunger, thirst, and dry mouth were recorded, and the amounts and types of food and fluids necessary to relieve these symptoms were documented. The subjective level of comfort was assessed longitudinally in all patients. RESULTS--Of the 32 patients monitored during the 12 months of study, 20 patients (63%) never experienced any hunger, while 11 patients (34%) had symptoms only initially. Similarly, 20 patients (62%) experienced either no thirst or thirst only initially during their terminal illness. In all patients, symptoms of hunger, thirst, and dry mouth could be alleviated, usually with small amounts of food, fluids, and/or by the application of ice chips and lubrication to the lips. Comfort care included use of narcotics for relief of pain or shortness of breath in 94% of patients. CONCLUSIONS--In this series, patients terminally ill with cancer generally did not experience hunger and those who did needed only small amounts of food for alleviation. Complaints of thirst and dry mouth were relieved with mouth care and sips of liquids far less than that needed to prevent dehydration. Food and fluid administration beyond the specific requests of patients may play a minimal role in providing comfort to terminally ill patients.
1994
McCann RM; Hall WJ; Groth-Juncker A
Jama
1994
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Journal Article
<a href="http://doi.org/10.1001/jama.1994.03520160047041" target="_blank" rel="noreferrer">10.1001/jama.1994.03520160047041</a>
Satisfaction with palliative care: what should we be aware of?
Humans; Prospective Studies; Research Design; Patient Satisfaction; Quality of Health Care; retrospective studies; Palliative Care/psychology; Palliative Care/standards; Outcome Assessment (Health Care)/organization & administration
This review addresses some of the methodological, theoretical and technical issues related to using satisfaction as an outcome measure of the quality of palliative care. The components of palliative care are presented, and the different approaches for evaluation discussed. The limitations of using prospective or retrospective designs are stated with emphasis on the bias resulting from using either patients or carers (proxies) as informants. The role of expectations, aspirations, and perceived health status as antecedents of patient satisfaction is discussed, as are the problems associated with using these to explain satisfaction with palliative care. The limitations of adapting the dimensions of patient satisfaction with medical care to satisfaction with palliative care when designing instruments are discussed. All this highlights the need to develop separate models of satisfaction with palliative care for patients and carers, and to design instruments which are specific to patients or carers. [References: 68]
1998
Fakhoury WK
International Journal Of Nursing Studies
1998
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Journal Article
<a href="http://doi.org/10.1016/s0020-7489(98)00026-1" target="_blank" rel="noreferrer">10.1016/s0020-7489(98)00026-1</a>
Facilitating day-to-day decision making in palliative care
Female; Humans; Male; Adult; Questionnaires; Aged; Middle Aged; Nurse-Patient Relations; 80 and over; Non-U.S. Gov't; Research Support; decision making; Palliative Care/psychology; Oncologic Nursing; Nursing Process
As part of a larger grounded theory study investigating the process by which palliative care patients make everyday choices, a secondary analysis of data was conducted to investigate the ways nurses support or restrict patients' participation in their care. Constant comparative methods were used to generate a detailed, contextually grounded description of nurses' strategies that influenced patients' participation in making everyday choices about their personal and nursing care. Data consisted of field notes derived from observations of patients and their caregivers in two hospital-based palliative care units and from 23 transcripts of interviews with participating nurses and patients. Nurses' efforts to support patients' participation in decision making were described as a four-phase process: getting to know the patient, enhancing opportunities for choice, being open to patient choice, and respecting choice. Factors influencing nurses' use of supportive behaviors and behaviors that restricted patients' participation in everyday choices were identified. Given the importance patients attributed to making choices, these findings provide a foundation for the design of nursing interventions that hold great potential for directly influencing quality of life.
2000
Bottorff JL; Steele R; Davies B; Porterfield P; Garossino C; Shaw M
Cancer Nursing
2000
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/10.1097/00002820-200004000-00011" target="_blank" rel="noreferrer">10.1097/00002820-200004000-00011</a>
The need for palliative care for patients with non-cancer diseases: a review of the evidence
Humans; Health Services Needs and Demand; Research Design; Patient Education as Topic; Palliative Care/psychology; Psychological; Stress; Terminal Care/psychology
The palliative care needs of patients with cancer are understood and managed well by specialist palliative care services. Patients dying of non-cancer diseases are rarely offered these services. A literature review was conducted to determine the physical and psychosocial problems of patients dying from non-cancer diseases. Studies were identified using a systematic keyword search of six electronic databases. Fourteen studies were identified and assessed according to rigour of design. Findings suggest that some patients dying of non-cancer have needs comparable with those dying of cancer. Low response rates, subject bias, and measurement bias mean that findings should be viewed with caution. More prospective, rigorously designed research is necessary to identify which patients with non-cancer diagnoses may benefit from specialist palliative care.
2001
Luddington L; Cox S; Higginson I; Livesley B
International Journal Of Palliative Nursing
2001
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/10.12968/ijpn.2001.7.5.12635" target="_blank" rel="noreferrer">10.12968/ijpn.2001.7.5.12635</a>
End-of-life decisions in perinatal care: A view from health-care providers in Mexico
Attitude Of Health Personnel;decision Making;perinatal Care;terminal Care/psychology; Abortion; Adult; Aged; Attitude To Death; Euthanasia; Female; Fetal Diseases; Humans; Induced/psychology; Infant; Male; Mexico; Middle Aged; Newborn; Nurses/psychology; Palliative Care/psychology; Passive/psychology; Perinatal Death; Physicians/psychology; Pregnancy; Religion; Social Workers/psychology; Young Adult
OBJECTIVE: To examine the opinions of a perinatal health team regarding decisions related to late termination of pregnancy and severely ill newborns. MATERIALS AND METHODS: An anonymous questionnaire was administered to physicians, social workers, and nurses in perinatal care. Differences were evaluated using the chi square and Student's t tests. RESULTS: When considering severely ill fetuses and newborns, 82% and 93% of participants, respectively, opted for providing palliative care, whereas 18% considered feticide as an alternative. Those who opted for palliative care aimed to diminish suffering and those who opted for intensive care intended to protect life or sanctity of life. There was poor knowledge about the laws that regulate these decisions. CONCLUSIONS: Although there is no consensus on what decisions should be taken with severely ill fetuses or neonates, most participants considered palliative care as the first option, but feticide or induced neonatal death was not ruled out.
Grether P; Lisker R; Loria A; Alvarez-del-Rio A
Salud Publica De Mexico
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://www.ncbi.nlm.nih.gov/pubmed/26679311" target="_blank" rel="noreferrer">26679311</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>
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
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
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: 10.1080/07481187.2014.913086
More Than Medication: Perinatal Palliative Care
Decision Making/ethics; Humans; Infant Extremely Premature; Infant Newborn; Intensive Care Units Neonatal; Maternal-fetal Relations/psychology; Palliative Care/ethics; Palliative Care/legislation & Jurisprudence; Palliative Care/psychology; Parental Consent/ethics; Parental Consent/legislation & Jurisprudence; Parental Consent/psychology; Patient Rights/ethics; Patient Rights/legislation & Jurisprudence; Perinatal Care/ethics; Perinatal Care/legislation & Jurisprudence; Perinatal Care/standards; Personhood; Professional-family Relations; Resuscitation Orders/ethics; Resuscitation Orders/legislation & Jurisprudence; Resuscitation Orders/psychology
Editorial
Carter BS
Archives Of Disease In Childhood. Fetal And Neonatal Edition
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/apa.13529
Listening To Parents: The Role Of Symptom Perception In Pediatric Palliative Home Care
Adult; Cross-sectional Studies; Death; Dyspnea/diagnosis; Dyspnea/psychology; Female; Home Care Services/standards; Humans; Male; Pain/diagnosis; Pain/psychology; Palliative Care/methods; Palliative Care/psychology; Parents/psychology; Pediatrics/methods; Perception; Quality Of Life/psychology; Retrospective Studies; Surveys And Questionnaires; Symptom Assessment/psychology
End-of-life Symptoms; Pediatric Palliative Home Care; Symptom Perception
OBJECTIVE:
This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children.
METHODS:
In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase).
RESULTS:
Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R 2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0-10) and rated the child's death as highly peaceful (median 9). Significance of the results: The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and palliative care.
Vollenbroich R; Borasio GD; Duroux A; Grasser M; Brandstatter M; Fuhrer M
Palliative & Supportive 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: 10.1017/S1478951515000462
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).
Development And Evaluation Of A Palliative Care Curriculum For Cystic Fibrosis Healthcare Providers.
Attitude Of Health Personnel; Curriculum; Cystic Fibrosis/psychology; Cystic Fibrosis/therapy; Disease Management; Female; Health Personnel/education; Health Personnel/psychology; Humans; Male; Middle Aged; Needs Assessment; Palliative Care/methods; Palliative Care/psychology; Quality Of Life; Surveys And Questionnaires; Terminal Care/methods; Terminal Care/psychology; United States
Cystic Fibrosis; Education; End-of-life Care; Palliative Care
BACKGROUND:
Primary palliative care refers to basic skills that all healthcare providers can employ to improve quality of life for patients at any stage of disease. Training in these core skills is not commonly provided to clinicians caring for cystic fibrosis (CF) patients. The objective of this study was to assess change in comfort with core skills among care team members after participation in CF-specific palliative care training focused on management of burdensome symptoms and difficult conversations.
METHODS:
A qualitative needs assessment was performed to inform the development of an 18-hour curriculum tailored to the chronicity and complexity of CF care. A 32-question pre- and post-course survey assessed CF provider comfort with the targeted palliative care skills in 5 domains using a 5-point Likert scale (1=very uncomfortable, 3=neutral, 5=very comfortable).
RESULTS:
Among course participants (n=16), mean overall comfort score increased by 0.9, from 3 (neutral) to 3.9 (comfortable) (p<0.001). Mean comfort level increased significantly (range 0.8 to 1.4) in each skill domain: use of supportive care resources, pain management, non-pain symptom management, communication, and psychosocial skills.
CONCLUSIONS:
CF-specific palliative care training was well received by participants and significantly improved self-assessed comfort with core skills.
Linnemann RW; O’Malley PJ; Friedman D; Georgiopoulos AM; Buxton D; Altstein
LL
Journal Of Cystic Fibrosis
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.jcf.2015.03.005
Predictors Of Intention To Refer To Pediatric Palliative Or Hospice Care
Adult; Age Factors; Attitude Of Health Personnel; Attitude To Death; Continental Population Groups; Female; Hospice Care/psychology; Hospitals Pediatric/statistics & Numerical Data; Humans; Intensive Care Units Neonatal/statistics & Numerical Data; Intention; Male; Middle Aged; Nurses Pediatric/psychology; Palliative Care/psychology; Referral And Consultation/statistics & Numerical Data; Regression Analysis; Sex Factors
Andersen; Behavioral Model; Health Service Use; Hospice; Nurse; Palliative Care; Pediatrics; Referral
The purpose of this descriptive correlational study was to determine whether nurse characteristics, level of comfort with care of the dying, and spirituality predict intention to refer and timing of referral to pediatric palliative/hospice care. The Behavioral Model of Health Services Use served as the framework for this study. Data were collected from 105 pediatric nurses recruited from 7 patient units of one pediatric hospital. Regression analysis revealed several nurse factors (practice unit, years of experience, age, race/ethnicity) that predicted intent to refer and timing of referral to pediatric palliative/hospice care. The relationship between nurse characteristics and intent to refer was specific to certain medical conditions (HIV, extreme prematurity, brain injuries). Healthcare providers can use these findings to improve care for children with life-limiting illnesses.
N E Conner; N Uddin
American Journal Of Hospice And 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: 10.1177/1049909115593062