Family-Centered Culture Care: Touched by an Angel
ethics; mental stress; morality; psychology; religion; attitude to death; child; cultural anthropology; empathy; ethnology; family nursing; Hinduism; human; human relation; Impatiens; infant; newborn; nursing staff; Touch; treatment refusal
An Asian Indian Hindu family chose no intervention and hospice care for their newborn with hypoplastic right heart syndrome as an ethical option, and the newborn expired after five days. Professional nursing integrates values-based practice and evidence-based care with cultural humility when providing culturally responsive family-centered culture care. Each person's worldview is unique as influenced by culture, language, and religion, among other factors. The Nursing Team sought to understand this family's collective Indian Hindu worldview and end-of-life beliefs, values, and practices, in view of the unique aspects of the situation while the team integrated evidence-based strategies to provide family-centered culture care. Parental care choices conflicted with those of the Nursing Team, and some nurses experienced moral distress and cultural dissonance when negotiating their deeply held cultural and religious views to advocate for the family. The inability to reconcile and integrate a stressful or traumatic experience impacts nurses' well-being and contributes to compassion fatigue. Nurses need to be intentional in accessing interventions that promote coping and healing and moral resilience. Reflection and cultural humility, assessment, and knowledge in context, increase evidence-based culture care and positive outcomes. U.S. society's views on ethical behavior continue to evolve, and some may argue that the law should place more limits on parents' right to choose or to refuse treatment for their infants and children. Moral distress can lead to moral resilience and satisfaction of compassion when nurses provide family-centered culture care with cultural responsiveness and integrate values-based practice with evidence-based care, and aim to first do no harm.
Hernandez JA
Journal of Clinical Ethics
2019
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).
Discussing Death as a Possible Outcome of PICU Care
attitude to death; death; child; critical illness; decision making; doctor patient relationship; family; female; human; interpersonal communication; male; pediatric intensive care unit; physician; psychology; risk assessment; terminal care; uncertainty
OBJECTIVES: To describe practical considerations related to discussions about death or possible death of a critically ill child. DATA SOURCES: Personal experience and reflection. Published English language literature. STUDY SELECTION: Selected illustrative studies. DATA EXTRACTION: Not available. DATA SYNTHESIS: Narrative and experiential review were used to describe the following areas benefits and potential adverse consequences of conversations about risk of death and the timing of, preparation for, and conduct of conversations about risk of death. <br/>CONCLUSION(S): Timely conversations about death as a possible outcome of PICU care are an important part of high-quality ICU care. Not all patients "require" these conversations; however, identifying patients for whom conversations are indicated should be an active process. Informed conversations require preparation to provide the best available objective information. Information should include distillation of local experience, incorporate the patients' clinical trajectory, the potential impact(s) of alternate treatments, describe possible modes of death, and acknowledge the extent of uncertainty. We suggest the more factual understanding of risk of death should be initially separated from the more inherent value-laden treatment recommendations and decisions. Gathering and sharing of collective knowledge, conduct of additional investigations, and time can increase the factual content of risk of death discussions. Timely and sensitive delivery of this best available knowledge then provides foundation for high-quality treatment recommendations and decision-making.
Gilleland JC; Parshuram CS
Pediatric Critical Care Medicine
2018
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/10.1097/PCC.0000000000001557" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000001557</a>
Protective and risk factors in the grieving process among cancer-bereaved
Parents; Female; Male; Risk Factors; Attitude to Death; Neoplasms; Quality of Life; Bereavement; Grief; Qualitative Studies; Human; Support Psychosocial; Thematic Analysis; Funding Source
This Norwegian nationwide study explored cancer-bereaved parents'
Rasouli O; Øglænd IS; Reinfjell T; Eilertsen MEB
Death Studies
2023
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/10.1080/07481187.2022.2142324" target="_blank" rel="noreferrer noopener">10.1080/07481187.2022.2142324</a>
Bereaved mothers' experience of expressing and donating breast milk: An interpretative phenomenological study
Female; Attitude to Death; Bereavement; Grief; Adult; Altruism; Mothers; Phenomenological Research; Human; Life Experiences; Evaluation; Northern Ireland; Thematic Analysis; Coping; Perinatal Death; Funding Source; Milk Banks; Milk, Human; Maternal Attitudes; Semi-Structured Interview; Psychosocial Factors; Maternal Role; Milk Ejection; Autonomy; Milk Expression
Abstract Perinatal loss is a devastating event for any mother. What is often overlooked is a mothers continued ability to lactate following the death of her child. Donor breast milk is a commodity highly sought after given its value for feeding sick babies resident in Neonatal Intensive Care Units. This study aimed to explore the lived experience of mothers who have expressed and donated their breast milk following the loss of their infant. Seven bereaved mothers who donated milk to the Human Milk Bank in Northern Ireland were recruited. These women took part in semistructured interviews, which explored their experiences of perinatal loss and the role that expression/donation played for them in their grief. Their accounts were analysed using a qualitative interpretative phenomenological analysis (IPA) method. After transcription and analysis, three superordinate themes emerged; (1) fulfilling the mother role; (2) the power of being able to 'Do'; (3) making good from the bad. The stories of these women reflect the independent and individual nature of grief. Each mother gained a great deal of comfort in having the ability to express milk. For some this created a physical connection to their child, for others, it created time alone to process what had happened and for all, it created a sense of autonomy and ownership in what was otherwise a very turbulent time in their lives.
Ward G; Adair P; Doherty N; McCormack D
Maternal & Child Nutrition
2023
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/10.1111/mcn.13473" target="_blank" rel="noreferrer noopener">10.1111/mcn.13473</a>
Definitely Mixed Feelings: The Effect of COVID-19 on Bereavement in Parents of Children Who Died of Cancer
bereavement; Bereavement; Female; Humans; Male; Parents/psychology; Attitude to Death; Adaptation Psychological; grief; Attitude to Death; pediatric cancer; bereaved parents; Neoplasms; Neoplasms; Adaptation Psychological/physiology; Parents -- Psychosocial Factors; Disease Outbreaks; Pandemics; Covid-19; Bereavement; Coronavirus Infections/psychology; Pneumonia Viral/psychology; Arthritis Impact Measurement Scales; Coronavirus Infections -- Psychosocial Factors; Pneumonia Viral -- Psychosocial Factors; Ways of Coping Questionnaire
Context: Coronavirus disease 2019 (COVID-19) has impacted most elements of daily life, including the provision of support after a child's death and the experience of parental bereavement.Objectives: This study aims to examine ways in which COVID-19 has affected the bereavement experiences of parents whose children died of cancer before the pandemic.Methods: Parents who participated in a survey-based study examining the early grief experience were invited to complete a semistructured interview. During the interview, which focused on examining the current support for parents and other family members within the first several years after the child's death, participants were asked how COVID-19 has impacted their life and bereavement.Results: Fifteen of 33 eligible parents completed the interview; 14 were white and non-Hispanic, five were males. Parents participated an average of 19 (range 12-34) months after their child's death. COVID-19 was addressed in 13 interviews. Eleven codes were used to describe interview segments; the most commonly used codes were change in support, no effect, familiarity with uncertainty/ability to cope, and change in contact with care/research team.Conclusion: Parents identified multiple and variable ways-both positive, negative, and neutral-how COVID-19 has affected their bereavement. Many parents commented on feeling more isolated because of the inability to connect with family or attend in-person support groups, whereas others acknowledged their experience has made them uniquely positioned to cope with the uncertainty of the current situation. Clinicians must find innovative ways to connect with and support bereaved parents during this unique time.
Helton G; Wolfe J; Snaman JM
Journal of Pain and Symptom Management
2020
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/10.1016/j.jpainsymman.2020.08.035" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.08.035</a>
Maternal Grief: A Qualitative Investigation of Mothers' Responses to the Death of a Child From Cancer
Adaptation; Attitude to Death; Bereavement; Childhood Neoplasms – Mortality; Complicated Grief; Coping; Female; Grief; Interviews; Mothers – Psychosocial Factors; Phenomenological Research; Psychological; Qualitative Studies; Self Concept; Social Environment
This study explored bereaved mothers' responses to the death of a child from cancer, with a focus on identifying adaptive and complicated grief reactions. To understand the unique meaning of their loss, in-depth interviews were conducted with 13 mothers at two time points. Interpretative phenomenological analysis—guided by meaning-making theories of loss—revealed five master categories: the perceptions of the child's life with cancer and death from the disease, changed self-identity, coping style, developing an ongoing relationship to the deceased child, and the postdeath social environment. Each of these master categories and associated subthemes provided insights into the characteristics of the bereaved mothers' adaptive and complicated grief responses to their loss. Given all the mothers evidenced multiple forms or types of these responses over time, they could not be categorized as adaptive or complicated grievers. However, the varying proportions of each of these responses highlighted differences in overall bereavement adaptation.
Gerrish NJ; Bailey S
Omega
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0030222818762190" target="_blank" rel="noreferrer noopener">10.1177/0030222818762190</a>
Defining Legacy: The Perceptions of Pediatric Health Care Providers
Child; Female; Humans; Male; Adaptation Psychological; Attitude to Death; Child Hospitalized/psychology; Terminal Care/psychology; pediatrics; Parents/psychology; Physician's Role; Social Support; Pediatrics/standards; Terminally Ill/psychology; health care; legacy; perceptions; providers
Legacy building interventions like plaster hand molds are offered in most children's hospitals, yet little is known about how the concept of legacy is understood and described by pediatric health care providers. Therefore, this study explored pediatric health care providers' perceptions of legacy at an academic medical center to ensure that future legacy interventions are evidence-informed and theoretically grounded. An electronic survey featuring three open-ended questions and two multiple-choice questions with an option for free text response was completed by 172 medical and psychosocial health care providers. Analysis yielded four themes: (1) legacy is intergenerational, enduring, and typically associated with end-of-life; (2) legacies articulate the impacts on others for which one is known and remembered; (3) legacies can be expressed through tangible items or intangible qualities; and (4) legacies are informed and generated by family relationships and work experiences. By understanding legacy as a personally and professionally contextualized experience, health care providers can better assess and meet the legacy needs of hospitalized pediatric patients and families.
Boles J; Jones M; Dunbar J; Cook J
Clinical Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0009922820940808" target="_blank" rel="noreferrer noopener">10.1177/0009922820940808</a>
Factors During a Child's Illness Are Associated With Levels of Prolonged Grief Symptoms in Bereaved Mothers and Fathers
Humans; Adolescent; Child; Female; Male; Middle Aged; Sex Factors; Attitude to Death; grief; Adult; Surveys and Questionnaires; Parent-Child Relations; Mothers/psychology; Neoplasms/*psychology; Parents/*psychology; Fathers/psychology
PURPOSE: Previous research shows that bereaved parents are at an increased risk for intense and prolonged grief responses. To offer effective support to parents during a child's cancer treatment and after their child's death, more knowledge is needed about factors related to the child's illness trajectory that may contribute to prolonged grief in bereaved parents and about possible sex differences related to such factors. Therefore, we examined possible contributing factors associated with prolonged grief in cancer-bereaved mothers and fathers 1 to 5 years after their child died of cancer. METHODS: We studied data from a population-based nationwide survey, including 133 mothers and 92 fathers who had lost a child to cancer 1 to 5 years earlier, using univariable and multiple regression analyses to assess the associations between prolonged grief and possible contributing variables. RESULTS: The variables associated with lower levels of prolonged grief symptoms for mothers were being able to talk about feelings within the family (P = .00) and trusting that health care professionals made every possible effort to cure the child (P = .01). The statistically significantly associated variables for fathers were having said farewell to the deceased child in the way they wanted (P = .00) and feeling that they had received practical support from health care professionals during the child's illness trajectory (P = .01). CONCLUSION: We found factors during the illness of children with cancer that contributed to prolonged grief for parents; these were different for mothers and fathers. The results may have implications for design of family bereavement support within pediatric oncology care, including addressing the differing needs of mothers and fathers more effectively.
Pohlkamp L; Kreicbergs U; Sveen J
Journal of Clinical Oncology
2020
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/10.1200/jco.19.01493" target="_blank" rel="noreferrer noopener">10.1200/jco.19.01493</a>
Maternal Grief: A Qualitative Investigation of Mothers' Responses to the Death of a Child From Cancer
Female; Adaptation; Psychological; Attitude to Death; Bereavement; Self Concept; Social Environment; Interviews; Human; Phenomenological Research; Qualitative Studies; Coping; Grief; Complicated Grief; Childhood Neoplasms – Mortality; Mothers – Psychosocial Factors
This study explored bereaved mothers' responses to the death of a child from cancer, with a focus on identifying adaptive and complicated grief reactions. To understand the unique meaning of their loss, in-depth interviews were conducted with 13 mothers at two time points. Interpretative phenomenological analysis—guided by meaning-making theories of loss—revealed five master categories: the perceptions of the child's life with cancer and death from the disease, changed self-identity, coping style, developing an ongoing relationship to the deceased child, and the postdeath social environment. Each of these master categories and associated subthemes provided insights into the characteristics of the bereaved mothers' adaptive and complicated grief responses to their loss. Given all the mothers evidenced multiple forms or types of these responses over time, they could not be categorized as adaptive or complicated grievers. However, the varying proportions of each of these responses highlighted differences in overall bereavement adaptation.
Gerrish N J; Bailey S
Omega: Journal of Death & Dying
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0030222818762190" target="_blank" rel="noreferrer noopener">10.1177/0030222818762190</a>
When a child dies: a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief- and loss theories
Attitude to Death; Grief; Adaptation; Bereavement; Hospice Care/methods/psychology/standards; Humans; Interventions; Models theoretical; Paediatrics; Parenting/psychology; Parents; Parents/psychology; Psychological; Psychological Theory; Social Support; Systematic review
BACKGROUND: The availability of interventions for bereaved parents have increased. However, most are practice based. To enhance the implementation of bereavement care for parents, an overview of interventions which are replicable and evidence-based are needed. The aim of this review is to provide an overview of well-defined bereavement interventions, focused on the parents, and delivered by regular health care professionals. Also, we explore the alignment between the interventions identified and the concepts contained in theories on grief in order to determine their theoretical evidence base. METHOD: A systematic review was conducted using the methods PALETTE and PRISMA. The search was conducted in MEDLINE, Embase, and CINAHL. We included articles containing well-defined, replicable, paediatric bereavement interventions, focused on the parent, and performed by regular health care professionals. We excluded interventions on pathological grief, or interventions performed by healthcare professionals specialised in bereavement care. Quality appraisal was evaluated using the risk of bias, adapted risk of bias, or COREQ. In order to facilitate the evaluation of any theoretical foundation, a synthesis of ten theories about grief and loss was developed showing five key concepts: anticipatory grief, working models or plans, appraisal processes, coping, and continuing bonds. RESULTS: Twenty-one articles were included, describing fifteen interventions. Five overarching components of intervention were identified covering the content of all interventions. These were: the acknowledgement of parenthood and the child's life; establishing keepsakes; follow-up contact; education and information, and; remembrance activities. The studies reported mainly on how to conduct, and experiences with, the interventions, but not on their effectiveness. Since most interventions lacked empirical evidence, they were evaluated against the key theoretical concepts which showed that all the components of intervention had a theoretical base. CONCLUSIONS: In the absence of empirical evidence supporting the effectiveness of most interventions, their alignment with theoretical components shows support for most interventions on a conceptual level. Parents should be presented with a range of interventions, covered by a variety of theoretical components, and aimed at supporting different needs. Bereavement interventions should focus more on the continuous process of the transition parents experience in readjusting to a new reality. TRIAL REGISTRATION: This systematic review was registered in Prospero (registration number: CRD42019119241).
Kochen EM; Jenken F; Boelen PA; Deben LMA; Fahner JC; van den Hoogen A; Teunissen SCCM; Geleijns K; Kars MC
BMC Palliative Care
2020
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/s12904-020-0529-z" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-0529-z</a>
A Time to Live and a Time to Die: Heterotopian Spatialities and Temporalities in a Pediatric Palliative Care Team
Anthropology; Attitude to Death; child; communication; death; humans; palliative care; Parents/psychology; patient care team; pediatric hospitals; pediatrics; spatial analysis; time factors; uncertainty
The death of a child creates especially poignant feelings and extreme stress, distress, and devastation for family members and healthcare providers. In addition, serious or long-term illness forces a reconstruction of our experiences with time and space. In this paper, we report on a long-term ethnographic study of a Pediatric Palliative Care Team (PPCT). Using the concepts of spatiality and temporality; Deleuze's concepts of smooth and striated spaces; Innis's concepts of space and time biases; Foucault's concept of heterotopian space-places with multiple layers of meaning; and a related concept of heterokairoi-moments in time with multiple possibilities-we consider how the PPCT constructs and reconstructs meaning in the midst of chaos, ethical dilemmas, and heartbreaking choices.
Davis C S; Snider M J; King L; Shukraft A; Sonda J D; Hicks L; Irvin L
Health Communication
2019
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/10.1080/10410236.2018.1443262" target="_blank" rel="noreferrer noopener">10.1080/10410236.2018.1443262</a>
Fifteen-minute consultation: Not the whole story-considering children's spirituality and advance care planning
Humans; Adolescent; Child; Female; Male; Middle Aged; palliative care; Attitude to Death; Preschool; Adult; Attitude to Health; Spirituality; Practice Guidelines as Topic; Pediatrics/*standards; Advance Care Planning/*standards; United Kingdom; Family/*psychology; paediatric practice; Palliative Care/*psychology/*standards
In a society of diverse views, faiths and beliefs, what can paediatric palliative care contribute to our understanding of children's spirituality? By failing to recognise and respond to their spirituality in this work, we risk missing something of profound importance to children and their families. We overlook their search for wholeness in the absence of cure and fall short of offering truly holistic care. This paper explores how developments in advance care planning and related documentation are addressing these issues. Since children's spirituality is elusive and rarely explored in practice, it aims to clarify our understanding of it with a variety of examples and contains suggestions for hearing the voice of the child amid the needs of parents and professionals.
Clayton M; Aldridge J
Archives of Disease in Childhood - Education and Practice
2019
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/10.1136/archdischild-2017-314525" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-314525</a>
Trauma to Transformation: the lived experience of bereaved parents of children with chronic life-threatening illnesses in Singapore
Asia; Attitude to Death; Bereavement – Singapore; Chinese; Critical Illness – Singapore; Ethnic Groups; Grounded Theory; Human; India – Ethnology; Interviews; Life Experiences – Evaluation – Singapore; Palliative Care – Singapore; Parent-Child Relations – Singapore; Parents – Psychosocial Factors – Singapore; Pediatric Care – Singapore; Posttraumatic Growth; Psychological – Prevention and Control – Singapore; Psychological Well-Being; Psychosocial; Qualitative Studies; Rituals and Ceremonies; Singapore; Single Parent – Psychosocial Factors; Spouses – Psychosocial Factors; Support
Background: In 2016, over 6.6 million children died globally, and 245 children died in Singapore. Chronic illnesses are prevalent causes of child mortality around the world. Despite growing research that examines the lived experience of parents bereaved by their child's chronic life-threatening illness, there is no such study within the Asian context. Methods: To bridge this knowledge gap, meaning-oriented, strength-focused interviews were conducted with 25 parental units (i.e. 6 couples, 13 lone mothers, 4 lone fathers, and 2 primary parental figures) who lost their child to chronic life-threatening illness in Singapore (N = 31), including those of Chinese (n = 17), Malay (n = 10) and Indian ethnicities (n = 4), between August 2017 and April 2018. Results: Data analysis adhering to the grounded theory approach revealed 7 themes and 25 sub-themes that were organized into a Trauma-to-Transformation Model of Parental Bereavement. This model shows the major milestones in participants' lived experience of their child's chronic life-threatening illness and death, starting from the diagnosis of their child's chronic life-threatening illness and the subsequent emotional turmoil (Theme 1), the mourning of their child's death and the losses which accompanied the death (Theme 3) and participants' experience of posttraumatic growth through reflection of their journey of caregiving and child loss (Theme 5). The model further describes the deliberate behaviors or 'rituals' that helped participants to regain power over their lives (Theme 2), sustain an intimate bond with their child beyond death (Theme 4), and transcend their loss by deriving positive outcomes from their experience (Theme 6). Finally, the model denotes that the lived experiences and well-being of participants were embedded within the health-and-social-care ecosystem, and in turn impacted by it (Theme 7). Conclusion: These themes and their corresponding sub-themes are discussed, with recommendations for enhancing culturally sensitive support services for grieving Asian parents around the globe.
Dutta O; Tan-Ho G; Choo P Y; Low X C; Chong P H; Ng C; Ganapathy S; Ho A H Y
BMC Palliative Care
2020
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/s12904-020-00555-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00555-8</a>
Bereaved mothers' and fathers' prolonged grief and psychological health 1 to 5 years after loss-A nationwide study
Adaptation; Adult; Attitude to Death; Child; childhood cancer; depression; Depression/psychology; fathers; Fathers/*psychology; Female; Grief; Humans; insomnia; Male; Mental Health/*statistics & numerical data; Middle Aged; Mothers; Mothers/*psychology; Parents/psychology; pediatric oncology; Pgd; Posttraumatic stress; prolonged grief disorder; Psychological
OBJECTIVE: To assess differences in prolonged grief, depression, posttraumatic stress, and sleep disturbances in bereaved parents across years since loss (1-5 years) and by gender and to assess potential interactive effects of time since loss and gender on bereavement outcomes. METHODS: This study examined symptom levels of prolonged grief disorder, depression, posttraumatic stress, and insomnia in bereaved parents. A sample, including 133 mothers and 92 fathers who had lost a child to cancer 1 to 5 years previously, subdivided to five subsamples, one for each year since loss. Analysis of variance (ANOVA) was used to assess differences in symptom levels, related to years since loss, and gender. RESULTS: Regardless of how many years had passed since the loss, symptom levels of prolonged grief, depression, posttraumatic stress symptoms, and insomnia were elevated in all subsamples. Mothers showed higher symptom levels of prolonged grief, depression, and posttraumatic stress than fathers. However, no significant interaction effects were found between years since loss and gender on any of the symptom levels. CONCLUSIONS: Cancer-bereaved mothers and fathers are vulnerable to prolonged grief and psychological symptoms up to 5 years after the death of their child. Findings highlight that bereaved parents may need long-term support, and the results deserve further attention in research and clinical care.
Pohlkamp L; Kreicbergs U; Sveen J
Psycho-Oncology
2019
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/10.1002/pon.5112" target="_blank" rel="noreferrer noopener">10.1002/pon.5112</a>
How The Fault in Our Stars illuminates four themes of the Adolescent End of Life Narrative
Adolescent; Adolescent Behavior/psychology; advance care planning; Attitude to Death; Critical Illness/*psychology; Female; Humans; literature; literature and medicine; Male; Medicine in Literature; Modern; narrative ethics; narrative medicine; paediatrics; Terminal Care/*psychology
Adolescents who face life-limiting illness have unique developmental features and strong personal preferences around end of life (EOL) care. Understanding and documenting those preferences can be enhanced by practising narrative medicine. This paper aims to identify a new form of narrative, the Adolescent End of Life Narrative, and recognise four central themes. The Adolescent EOL Narrative can be observed in young adult fiction, The Fault in Our Stars, which elucidates the notion that terminally ill adolescents have authentic preferences about their life and death. Attaining narrative competence and appreciating the distinct perspective of the dying adolescent allows medical providers and parents to support the adolescent in achieving a good death. By thinking with the Adolescent EOL Narrative, adults can use Voicing my CHOiCES, an EOL planning guide designed for adolescents, to effectively capture the adolescent's preferences, and the adolescent can make use of this type of narrative to make sense of their lived experience.
Kirkman A O; Hartsock J A; Torke A M
Medical Humanities
2019
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/10.1136/medhum-2017-011400" target="_blank" rel="noreferrer noopener">10.1136/medhum-2017-011400</a>
Mothers of angels: (re)living the death of the child as a coping strategy
Adult; Attitude to Death; Child; Coping; Data Analysis Software; Death -- In Infancy and Childhood; Descriptive Research; Exploratory Research; Focus Groups; Hardiness; Human; Mother-Child Relations; Mothers -- Psychosocial Factors; Qualitative Studies; Thematic Analysis
Objective: To describe the experiences lived by mothers facing the death of their children. Method: A qualitative, exploratory and descriptive research conducted in Guarapuava-PR, with six participants of the "Marias" group that brings together mothers who lost their children and share their experiences to spontaneously help other women in the process of mourning. Data collection took place from May to August 2017, through a focus group. The speeches were organized by the Iramuteq® software and analyzed according to Creswell. Results: Age ranged from 28 to 40 years old, and most participants were married and catholic. The categories express the need to strengthen bonds and to create ways in which women can express themselves; the importance of the social network to accommodate mourning; the relevance of ethical and humanized care; and group identity as an element to promote resilience. Conclusion and implications for practice: Describing the potentialities and weaknesses in the process of loss and grief enables a qualifying and humanizing care, overcoming care gaps, stimulating the creation of creative and dialogical spaces in maternal care. These results may guide the professional approach by considering the sociocultural context and the risk factors experienced by the mothers, by supporting the development of resilient skills and enabling a humanized and individualized care. Objetivo: Describir las experiencias vivenciadas por las madres frente a la muerte de sus hijos. Método: Investigación descriptiva, exploratoria y cualitativa realizada en Guarapuava-PR, con seis participantes del grupo "Marías" que reúne a madres que perdieron a sus hijos y comparten sus vivencias además de ayudar a otras mujeres espontáneamente en el proceso de duelo. Los datos se recolectaron entre mayo y agosto de 2017, por medio de un grupo focal. Las conversaciones se organizaron por medio del software Iramuteq® y se analizaron según Creswell. Resultados: La edad varió entre 28 y 40 años, y la mayoría de las participantes estaban casadas y eran católicas. Las categorías expresan la necesidad de fortalecer vínculos y de crear medios con los que las mujeres puedan expresarse; la importancia de la red social para sobrellevar el duelo; la relevancia de una atención ética y humanizada y la identidad grupal como elemento promotor de la resiliencia. Conclusión e implicaciones para la práctica: Describir las potencialidades y debilidades en el proceso de pérdida y duelo permite calificar y humanizar el cuidado, superando las lagunas asistenciales y estimulando la creación de espacios creativos y de diálogo en el cuidado materno. Estos resultados pueden orientar el enfoque profesional al considerar el contexto sociocultural y los factores de riesgo que experimentan las madres, apoyando el desarrollo de habilidades resilientes y haciendo posible un cuidado humanizado e individualizado. Objetivo: Descrever as experiências vivenciadas pelas mães frente à morte do filho. Método: Pesquisa descritiva exploratória qualitativa realizada em Guarapuava-PR, junto a seis participantes do grupo "Marias" que reúne mães que perderam seus filhos e compartilham suas vivências além de ajudar outras mulheres espontaneamente no processo de luto. A coleta de dados ocorreu de maio e agosto/2017, por meio de grupo focal. As falas foram organizadas pelo software Iramuteq® e analisada segundo Creswell. Resultados: Idade variou entre 28 a 40 anos, maioria casadas e católicas. As categorias expressam a necessidade fortalecer vínculos e criar meios em que possam se expressar; importância da rede social para acolher o luto; relevância do atendimento ético e humanizado e a identidade grupal como elemento promotor da resiliência. Conclusão e implicações para a prática: Descrever as potencialidades e fragilidades no processo de perda e luto possibilita qualificar e humanizar o cuidado, com a superação de lacunas assistenciais estimulando a criação de espaços criativos e dialógicos no acolhimento materno. Estes resultados podem orientar a abordagem profissional ao considerar o contexto cultural, social e fatores de risco em que as mães vivenciam, ao apoiar o desenvolvimento de habilidades resilientes e possibilitando um cuidado humanizado e individualizado.
Gramazio Soares L; Kuchla É; de Azevedo Mazza V; Gramazio Soares L; Raimondo Ferraz M I; Padilha Mattei A
Anna Nery School Journal of Nursing / Escola Anna Nery Revista de Enfermagem
2020
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/10.1590/2177-9465-EAN-2019-0030" target="_blank" rel="noreferrer noopener">10.1590/2177-9465-EAN-2019-0030</a>
Mortality in parents after the death of a child
Attitude to Death; Bereavement; Child Mortality; Genetics; Heart Diseases -- Mortality; Human; Life Expectancy; Middle Age; Mortality -- Risk Factors; Parental Attitudes; Peer Group; Public Health; Twins; United States
The death of a child is a traumatic stressor that takes a toll on the health of parents. This study examined long-term impacts of the death of a child on the risk of early mortality in bereaved parents. In a follow-up analysis, a twin subsample was analyzed to examine potential genetic confounding. We analyzed data from the Midlife in the United States (MIDUS) study. The primary sample consists of two groups of MIDUS 2 participants (2004–06); (1) parents who experienced the death of a child prior to MIDUS 2 (n = 451) and (2) comparison parents who had not experienced death of any children (n = 1804) (mean age = 63). We also analyzed 52 twin pairs in which one twin experienced the death of a child and 271 twin pairs in which both twins had all living children. Mortality status of parents was assessed in 2017. Parents who had experienced the death of a child had a 32% higher likelihood of early mortality (defined as dying earlier than life expectancy) than their peers who did not have any deceased children, and they were more likely to die of heart disease. Analyses of the twin subsample revealed significantly lower concordance for early mortality among the pairs with a bereaved twin than among control twins, consistent with non-genetic effects. The findings suggest that the death of a child has lasting impacts on the risk of early mortality in bereaved parents. This study provides the first U.S. estimate of bereavement effects on mortality extending through the parents' full life course, with significant public health implications. In addition, analysis of concordance of early death rates in the twin subsample suggests the impact on mortality of parental bereavement, net of genetic factors. • 32% higher rate of mortality in bereaved parents than non-bereaved parents. • Parental mortality effect confirmed in twin sample. • Highest death rates from heart disease in bereaved parents.
Song J; Mailick M R; Greenberg J S; Floyd F J
Social Science & Medicine
2019
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/10.1016/j.socscimed.2019.112522" target="_blank" rel="noreferrer noopener">10.1016/j.socscimed.2019.112522</a>
Grief reactions and coping strategies of trainee doctors working in paediatric intensive care
Attitude of Health Personnel; pediatrics; Intensive Care Units; grief; Adaptation Psychological; attitude to death; physicians - psychosocial factors
Background: The death of a child can have significant emotional effects on doctors responsible for their care. Trainee doctors working in the paediatric intensive care unit (PICU) may be particularly vulnerable. The aim of this study was to examine the emotional impact of, and grief reactions to, a child's death in PICU trainee doctors, along with coping strategies they used.Methods: In a prospective, cross-sectional, observational study, qualitative and quantitative data were recorded on anonymised, written questionnaires. Grief severity was assessed using the Texas Revised Inventory of Grief. Emotional impact was assessed using the shortened Impact of Event Scale. The BriefCOPE tool was used to assess coping strategies. Qualitative data was analysed using conventional content analysis. Data are presented as median (inter-quartile range) or number (%).Results: All invited trainee doctors (23 anaesthetists; 5 paediatricians) completed the questionnaire (age, 30 [29-34] yr; 13/28 [46%] female). Two (7%) doctors experienced severe grief (Texas Revised Inventory of Grief score <39), with five (18%) doctors severely affected by the deaths as measured by the Impact of Event Scale. Qualitative analysis revealed prominent themes of sadness, helplessness, guilt, shock, and concern for the bereaved family. There was limited use of coping strategies. Speaking with another trainee doctor was the principal coping strategy. Requests for debriefing sessions, greater psychological support and follow-up with the patient's family were frequently suggested.Conclusions: Paediatric deaths evoke significant grief and emotional reactions in a subset of PICU trainee doctors. Trainee PICU doctors highlighted a lack of professional support and tailored debriefs.
ffrench-O'Carroll R; Feeley T; Crowe S; Doherty E M
BJA: The British Journal of Anaesthesia
2019
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/10.1016/j.bja.2019.01.034" target="_blank" rel="noreferrer noopener">10.1016/j.bja.2019.01.034</a>
Disparities in location of death of adolescents and young adults with cancer: A longitudinal, population study in California
Neoplasms; Death; Male; Hospital Mortality; Young Adult; Humans; Adult; Adolescent; Female; Retrospective Studies; Attitude to Death; Hospital Mortality/td [Trends]; California; Hospices/sn [Statistics & Numerical Data]; Patient Preference/sn [Statistics & Numerical Data]; Nursing Homes/sn [Statistics & Numerical Data]; Residence Characteristics/sn [Statistics & Numerical Data]
BACKGROUND: Patients with a terminal illness should have access to their chosen location of death. Cancer is the leading cause of non-accidental death among adolescents and young adults (AYAs; those aged 15-39 years). Although surveys have suggested that a majority of these patients prefer a home death, to the authors' knowledge, little is known regarding their barriers to accessing their preferred location of death. As a first step, the authors sought to determine, across a large population, 20-year trends in the location of death among AYA patients with cancer. METHODS: Using the Vital Statistics Death Certificate Database of the California Office of Statewide Health Planning and Development, the authors performed a retrospective, population-based analysis of California patients with cancer aged 15 to 39 years who died between 1989 and 2011. Sociodemographic and clinical factors associated with hospital death were examined using multivariable logistic regression. RESULTS: Of 30,573 AYA oncology decedents, 57% died in a hospital, 33% died at home, and 10% died in other locations (eg, hospice facility or nursing facility). Between 1989 and 1994, hospital death rates decreased from 68.3% to 53.6% and at-home death rates increased from 16.8% to 35.5%. Between 1995 and 2011, these rates were stable. Those individuals who were more likely to die in a hospital were those aged <30 years, of minority race, of Hispanic ethnicity, who lived <=10 miles from a specialty center, and who had a diagnosis of leukemia or lymphoma. CONCLUSIONS: Overall, the majority of AYA cancer deaths occurred in a hospital, with a 5-year shift to more in-home deaths that abated after 1995. In-hospital deaths were more common among younger patients, patients of minority race/ethnicities, and those with a leukemia or lymphoma diagnosis. Further study is needed to determine whether these rates and disparities are consistent with patient preferences. Cancer 2017;123:4178-4184. � 2017 American Cancer Society.
Rajeshuni N; Johnston EE; Saynina O; Sanders LM; Chamberlain LJ
Cancer
2017
<a href="http://doi.org/%2010.1002/cncr.30860" target="_blank" rel="noreferrer noopener">10.1002/cncr.30860</a>
Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology
Neoplasms/psychology; Medical Oncology; Middle Aged; Male; Disease Progression; dying; Child; Humans; Adult; Qualitative Research; Pediatrics; Adolescent; Parents; palliative care; Female; Attitude to Death; Attitude to Health; Narration; Switzerland; narrative; Leukemia/psychology; paediatric oncology; stories; lived experience; Oncologists; Bone Neoplasms/psychology; Sarcoma/psychology; Soft Tissue Neoplasms/psychology
Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this meaning-giving process interacts with cultural dominant stories on cancer and dying. The presented data come from 16 open-ended face-to-face interviews with palliative paediatric patients, their parents and physicians. The interviews were carried out in eight paediatric oncology centres in Switzerland. Data analysis followed Arthur Frank's dialogical narrative analysis. Quest narratives were relatively rare compared to both chaos and restitution stories. All participants welcomed chaos stories as a liminal haven between quest and restitution. The possibility that the child could die was either ignored or briefly contemplated, but then immediately pushed away. Except for one patient, children never directly addressed the topic of death. The way in which death was presented raises important questions about how the social discourse on dying is framed in terms of choice, autonomy and individuality. This discourse not only determines the way in which children and adults relate to the minor's death, it also constitutes an obstacle to children's participation in decision-making.
De CE; Elger BS; Wangmo T
European Journal of Cancer Care
2017
<a href="http://doi.org/%2010.1111/ecc.12651" target="_blank" rel="noreferrer noopener">10.1111/ecc.12651</a>
Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers' experiences
Hospital Mortality; Bereavement; Human; Communication; Anxiety; Stress Psychological; Palliative Care; Canada; Attitude to Death; Emotions; Adult Children; Life Change Events; Interviews; Interpersonal Relations; Memory; Collaboration; Narratives; Home Health Care; Purposive Sample; Support Psychosocial; Life Experiences; Patient Care Plans; Quality of Life; Content Analysis; Thematic Analysis; Advance Care Planning; Patient Attitudes; Accountability; Caregiver Attitudes; Health Facilities -- Canada; Idiopathic Pulmonary Fibrosis -- Prognosis; Idiopathic Pulmonary Fibrosis -- Therapy -- Canada; Pulmonologists; Spouses
Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital. Aim: The purpose of this study was to explore bereaved caregivers' experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic. Design: A narrative approach was used, with thematic and content analysis of open-ended interviews. Setting/participants: The clinic is located in a large western Canadian city. Caregivers of deceased patients were recruited through purposive sampling. The eight participants were either spouses or adult children. Results: Five major themes were identified: Having a Terminal Disease; Planning Goals and Wishes for Care; Living Life and Creating Memories; Feeling Strain and Responsibility; and Nearing the End. Caregivers had little understanding of prognosis prior to advance care planning conversations at the clinic. Advance care planning conversations enabled caregivers to know and support patients' goals and wishes. Caregivers described feeling informed, prepared, and supported when death was near. They expressed neither distress nor anxiety related to patients' symptoms or strain of relationships. Conclusion: Collaboration and close communication among caregivers, respirologists, and home care enabled effective symptom management and out of hospital deaths. Patients and caregivers had opportunities to enjoy events, create memories, determine preferences, and make plans. Further research on an early integrated palliative approach in Idiopathic Pulmonary Fibrosis is warranted related to quality of life, experience with death and dying, and caregiver bereavement.
Pooler C; Richman-Eisenstat J; Kalluri M
Palliative Medicine
2018
<a href="http://doi.org/10.1177/0269216318789025" target="_blank" rel="noreferrer noopener">10.1177/0269216318789025</a>
Comparison of mothers and grandmothers physical and mental health and functioning within 6 months after child NICU/PICU death
Attitude to Death; Bereavement; Blacks; Checklists; Chi Square Test; Cross Sectional Studies; Depression; Employment Status; Grandparents Psychosocial Factors; Grief; Health Status; Hispanics; Human; Intensive Care Units; Interviews; Mental Health; Mothers Psychosocial Factors; Neonatal; Paired T-Tests; Pediatric; Physical Fitness; Post-Traumatic; Psychological Tests; Psychosocial; Stress Disorders; Support
Losing a child is devastating for parents and grandparents. Family and friends generally focus on comforting and supporting the bereaved parents, unintentionally ignoring the bereaved grandparents. Grandmothers and grandfathers often struggle with wanting to help their adult children (deceased child’s parents) without usurping the parents’ responsibilities and decisions regarding the deceased child. Research on mothers’ and grandmothers’ health at about the same time after the same child’s death in the neonatal or pediatric intensive care unit is lacking. The aim of this study was to compare mothers and grandmothers on physical health, mental health, and functioning in the first 1–6 months after the same child’s death in a neonatal or pediatric intensive care unit.
Youngblut JM; Brooten D
Italian Journal of Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1186/s13052-018-0531-8" target="_blank" rel="noreferrer noopener">10.1186/s13052-018-0531-8</a>
Child’s Play: The Role of Play in Mitigating the Fear of Death Among Pediatric Palliative Care Team Patients, Families, and Caregivers
Terror Management Theory (TMT), derived from Ernest Becker’s The Denial of Death (1974), maintains that humans are motivated by the desire to overcome our fear of death by constructing meaning and significance in our lives in various ways, including making light of our mortality. In this paper, we examine the role of play as seriously ill children involved with a hospital-based palliative care team live out what may be the remainder of their lives. We question the function that play has, if any, in mitigating the fear of death among dying children and their caregivers. We explore formal and informal manners of therapeutic play among children and adults occurring in moments of terrible stress, pain, and the looming threat of death. We draw on playful representations of death from popular culture and from extended field research conducted with a pediatric palliative care team in a large regional children’s hospital caring for seriously ill children and their families, as patients, families, and caretakers struggle to make sense of their suffering, fear and loss.
Crane JL; Davis CS
Journal of Loss & Trauma
2018
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/10.1080/15325024.2018.1446271" target="_blank" rel="noreferrer noopener">10.1080/15325024.2018.1446271</a>
Parental Concordance Regarding Problems and Hopes for Seriously Ill Children: A Two-Year Cohort Study
pediatrics; Attitude to Health; Adolescent; Adult; Attitude to Death; Child; Cohort Studies; Female; Health Surveys; Humans; Infant; Longitudinal Studies; Male; Middle Aged; Only Child; Parents/ psychology; Pediatrics; Prevalence; Quality of Life/ psychology; Terminal Care/ psychology; Young Adult; decision-making; problems; Parent-Child Relations; Hope; Preschool; serious illness; child; female; male; young adult; adult; Child Health/statistics & numerical data; Critical Illness/epidemiology/ psychology; hopes; parental concordance; Philadelphia/epidemiology
CONTEXT: Parents of a seriously ill child may have different concerns and hopes for their child, and these concerns and hopes may change over time. OBJECTIVES: In a mixed-method prospective cohort of parental dyads of children with serious illness, to describe the major problems and hopes perceived for their child, examine the degree of concordance between parents, and assess whether prevalence and concordance change over time. METHODS: Eighty-four parents (42 dyads) of seriously ill children reported the major problems and hopes for their children at baseline. Thirty-two parents (16 dyads) answered the same questions at 24 months. Problems and hopes were classified into nine domains. Observed concordance was calculated between parents on each domain. Data for parents of 11 children who died are reported separately. RESULTS: The most common major problem and hope domains at baseline were physical body, quality of life, future health and well-being, and medical care. Parental dyads demonstrated a moderately high percentage of concordance (69%) regarding reported problem domains and a slightly lower percentage of concordance on hopes (61%), with higher concordance for more common domains. Domain prevalence and concordance changed considerably at 24 months. Parents of children who later died showed markedly different patterns of domain prevalence and more extreme patterns of concordance. CONCLUSION: Parents of children with serious illness may have different perspectives regarding major problems and hopes, and these perspectives change over time. Parents of sicker children are more likely to be in either complete agreement or disagreement regarding the problems and hopes they identify.
Hill DL; Nathanson PG; Fenderson RM; Carroll KW; Feudtner C
Journal of Pain and Symptom Management
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).
<a href="http://doi.org/10.1016/j.jpainsymman.2016.11.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2016.11.007</a>
Developing a process to support perinatal nurses after a critical event
Humans; Terminal Care; Attitude to Death; Neonatal Nursing; social support; Clinical Competence; Perinatal Care; Program Development; Needs Assessment; Nursing Methodology Research; Self Care; Risk Management; Family Nursing; Staff Development; Stress; Adaptation; Psychological; Models; Grief; Emergencies; Crisis Intervention
The work of perinatal nurses sometimes includes emergencies involving death, or near death, which can leave health care providers with feelings of stress and grief. After experiencing a particularly stressful period, nurses at our organization identified processes to help themselves recover and to support each other. The result of this work is a written plan to facilitate the support of perinatal nurses after critical events. This article describes the development and implementation of this plan.
2014-03
Foreman S
Nursing For Women's Health
2014
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Journal Article
<a href="http://doi.org/10.1111/1751-486X.12094" target="_blank" rel="noreferrer">10.1111/1751-486X.12094</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>
Bereavement support used by mothers in Ireland following the death of their child from a life-limiting condition
Child; Female; Humans; infant; Male; bereavement; mothers; Adult; Attitude to Death; social support; Self Care; Ireland; Stress; Preschool; Adaptation; Psychological; Newborn; Grief
BACKGROUND: Children's palliative care is a rapidly developing specialism internationally. Bereavement support is an integral component of children's palliative care but to date little research has investigated the bereavement support that mothers in Ireland use following the death of their child. OBJECTIVE: The aim of this study was to explore mothers' experiences of bereavement support in Ireland following the death of their child from a life-limiting condition. METHOD: A descriptive qualitative design was used. The study sample was ten mothers who had been bereaved in the previous 5 years. All mothers were recruited to the study by a gatekeeper from a voluntary organisation. Data were obtained through unstructured single interviews and analysed using conventional content analysis. RESULTS: The findings indicate that the mothers relied on a combination of informal and formal bereavement support. In addition to depending on others to provide support, the mothers described their ability to self-support. CONCLUSIONS: The findings show that mothers in Ireland use a variety of sources of support following the death of their child from a life-limiting condition. Health professionals involved in caring for families and children with a life-limiting condition should have an understanding of these sources.
2014-04
Jennings V; Nicholl H
International Journal Of Palliative Nursing
2014
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Journal Article
<a href="http://doi.org/10.12968/ijpn.2014.20.4.173" target="_blank" rel="noreferrer">10.12968/ijpn.2014.20.4.173</a>
Giving hope to families in palliative care and implications for practice
Child; Female; Humans; infant; Male; Attitude to Death; Communication; Family Nursing; Hope; Hospice and Palliative Care Nursing
Caring for a dying child and the family is one of the greatest nursing challenges. The way in which care is delivered will shape the experience they are about to face. Hope plays a crucial role in helping people cope, and healthcare professionals can foster appropriate hopes ethically, while maintaining open and honest communication. If palliative care is discussed with clients and families from the time of diagnosis, they can face realistic decisions better and not feel that they are 'giving up'. They need to know that everything possible is being done to improve the quality of the time left to them.
2014-06
Smith H
Nursing Children And Young People
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.7748/ncyp.26.5.21.e412" target="_blank" rel="noreferrer">10.7748/ncyp.26.5.21.e412</a>
Parent and clinician preferences for location of end-of-life care: Home, hospital or freestanding hospice?
adolescent; Child; Female; Humans; Male; Neoplasms; Terminal Care; home care services; hospice care; Parents; Prognosis; Questionnaires; Follow-Up Studies; Attitude to Death; Physicians; Choice Behavior; Residence Characteristics; Hospitals; quality of life; Preschool
BACKGROUND: Current options for location of end-of-life (EOL) care for children with cancer include home, hospital, and freestanding pediatric hospice (FSPH). However, access to these options varies greatly depending on geographical location. We aimed to determine bereaved parent and clinician preferences for location to EOL care and death. PROCEDURE: We administered questionnaires to 75 bereaved parents (response rate 54%) and 48 pediatric oncology clinicians (response rate 91%) at a large teaching hospital. Main outcome measure was parent and clinician ranking for preferred location of EOL care and death if given the options of home, hospital or FSPH. RESULTS: Majority of parents and clinicians ranked home as their first choice for EOL care (70.2% and 87%, respectively) and death (70.8% and 89.1%, respectively). Compared to clinicians, parents gave a higher ranking to hospital (P < 0.01) and lower ranking to FSPH (P < 0.01) as the preferred location for EOL care and death. Congruence between actual and preferred location of EOL care was more likely when a palliative care team was involved (P < 0.01) and less likely for children with haematologic malignancies (P = 0.03). CONCLUSIONS: Parents and clinicians prefer home as the location for EOL care and death for children with cancer. Hospital based palliative care is a preferred alternative if home is not desired. FSPH is a relatively recent phenomena and further research needs to be directed towards understanding its cost benefit in comparison to home and hospital-based EOL care. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013-11
Kassam A; Skiadaresis J; Alexander S; Wolfe J
Pediatric Blood & Cancer
2013
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Journal Article
<a href="http://doi.org/10.1002/pbc.24872" target="_blank" rel="noreferrer">10.1002/pbc.24872</a>
Suffering indicators in terminally ill children from the parental perspective
Child; Female; Humans; Male; Neoplasms; Terminal Care; Terminally Ill; Adult; Parent-Child Relations; Parents; Interviews as Topic; Attitude to Death; Qualitative Research; Spain; Stress; quality of life; Adaptation; Psychological
PURPOSE: Suffering is a complex multifaceted phenomenon, which has received limited attention in relation to children with terminal illness. As part of a wider study we interviewed parents of children with terminal illness to elicit their perspectives on suffering, in order to provide initial understanding from which to develop observational indicators and further research. METHODS: Qualitative descriptive study with semi-structured interviews made "ad hoc". Selection through deliberate sampling of mothers and fathers of hospitalised children (0-16 years old) with a terminal illness in Granada (Spain). KEY RESULTS: 13 parents were interviewed. They described children's suffering as manifested through sadness, apathy, and anger towards their parents and the professionals. The isolation from their natural environment, the uncertainty towards the future, and the anticipation of pain caused suffering in children. The pain is experienced as an assault that their parents allow to occur. CONCLUSIONS: The analysis of the interview with the parents about their perception of their ill children's suffering at the end of their lives is a valuable source of information to consider supportive interventions for children and parents in health care settings. An outline summary of the assessed aspects of suffering, the indicators and aspects for health professional consideration is proposed.
2013-12
Montoya-Juárez R; García-Caro MP; Schmidt-Rio-Valle J; Campos-Calderón C; Sorroche-Navarro C; Sánchez-García R; Cruz-Quintana F
European Journal Of Oncology Nursing: The Official Journal Of European Oncology Nursing Society
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.ejon.2013.04.004" target="_blank" rel="noreferrer">10.1016/j.ejon.2013.04.004</a>
The attitudes of neonatal professionals towards end-of-life decision-making for dying infants in Taiwan
Cross-Sectional Studies; Female; Humans; infant; Male; Intensive Care Units; Terminal Care; decision making; referral and consultation; Adult; Attitude of Health Personnel; Education; Medical Staff; Withholding Treatment; Questionnaires; Middle Aged; Attitude to Death; Resuscitation Orders; Self Report; Neonatology; Medical; Neonatal; Nursing Staff; Newborn; Clinical; Ethics Committees; Taiwan; Hospital; continuing
The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and neonatal nurses in Taiwan. Research was a cross-sectional design and a questionnaire was used to reach different research purposes. A convenient sample was used to recruit 24 physicians and 80 neonatal nurses from four neonatal intensive care units in Taiwan. Most participants agreed with suggesting a do not resuscitate (DNR) order to parents for dying neonates (86.5%). However, the majority agreed with talking to patients about DNR orders is difficult (76.9%). Most participants agree that review by the clinical ethics committee is needed before the recommendation of 'DNR' to parents (94.23%) and nurses were significantly more likely than physicians to agree to this (p=0.043). During the end-of-life care, most clinicians accepted to continue current treatment without adding others (70%) and withholding of emergency treatments (75%); however, active euthanasia, the administration of drug to end-of-life, was not considered acceptable by both physicians and nurses in this research (96%). Based on our research results, providing continuing educational training and a formal consulting service in moral courage for neonatal clinicians are needed. In Taiwan, neonatal physicians and nurses hold similar values and attitudes towards end-of-life decisions for neonates. In order to improve the clinicians' communication skills with parents about DNR options and to change clinicians' attitudes for providing enough pain-relief medicine to dying neonates, providing continuing educational training and a formal consulting service in moral courage are needed.
2013-06
Huang L-C; Chen CH; Liu Hsin-Li; Lee Ho-Yu; Peng Niang-Huei; Wang Teh-Ming; Chang YC
Journal Of Medical Ethics
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1136/medethics-2011-100428" target="_blank" rel="noreferrer">10.1136/medethics-2011-100428</a>
End-of-life decision making in Taiwan: healthcare practice is rooted in local culture and laws that should be adjusted to patients' best interests
Female; Humans; Male; Terminal Care; decision making; Attitude of Health Personnel; Medical Staff; Attitude to Death; Resuscitation Orders; Neonatology; Nursing Staff; Hospital
The observed Taiwanese neonatal professionals' more conservative attitudes than their worldwide colleagues towards end-of-life (EOL) decision making may stem from cultural attitudes toward death in children and concerns about medicolegal liability. Healthcare practice is rooted in local culture and laws; however that should be adjusted to patients' best interests. Improving Taiwanese neonatal professionals' knowledge and competence in EOL care may minimize ethical dilemmas, allow appropriate EOL care decision making, avoid infants' suffering, and ease parents' bereavement grief.
2013-06
Tang Siew Tzuh
Journal Of Medical Ethics
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1136/medethics-2012-100760" target="_blank" rel="noreferrer">10.1136/medethics-2012-100760</a>
Parents' perspectives on the deaths of their children in two Brazilian paediatric intensive care units
Child; Female; Humans; infant; Male; Intensive Care Units; Terminal Care; decision making; Adult; Parents; Attitude of Health Personnel; Attitude to Death; Professional-Family Relations; Communication; Brazil; Pediatric; Preschool; Quality of Health Care
OBJECTIVES: To evaluate the quality of care offered to terminally ill children and their families in the last days of life in two Brazilian Paediatric Intensive Care Units (PICUs) from the parents' perspectives. METHODS: This was a qualitative, exploratory study. Parents of a child who had died in one of the PICUs 6-12 months previously were invited to take part in two interviews: a private meeting with the PICU assistant physician who cared for their child, to discuss and review any outstanding issues related to the diagnosis, treatment, and prognosis, and a recorded interview with a researcher who was not involved in the child's treatment. Data from the interviews with the researcher were posteriorly grouped in categories according to recurrent terms. RESULTS: Six categories emerged, three of which are reported here. The quality of communication was low; the medical staff frequently used technical terms, limiting understanding. Parental participation in the decision-making process was scarce; decisions were based on the medical perspective. Finally, families reported uncompassionate attitudes from the medical staff and excessive technology in the final moments surrounding the child's death, although nurses were highly involved with palliative care measures and demonstrated sympathetic and supportive postures. CONCLUSION: The interviews uncovered deficiencies in the care provided to parents in the PICUs, indicating a need for changes in practice.
2013-10
Abib El Halal Gilda MC; Piva JP; Lago PM; El Halal MGS; Cabral FC; Nilson C; Garcia Pedro CR
International Journal Of Palliative Nursing
2013
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Journal Article
<a href="http://doi.org/10.12968/ijpn.2013.19.10.495" target="_blank" rel="noreferrer">10.12968/ijpn.2013.19.10.495</a>
Opinions of members of the National Civil (Family Proceedings) and Criminal Courts in withholding or withdrawing of life support situations in pediatrics
Attitude to Death; Argentina; Child; Cross-Sectional Studies; decision-making; ethics; Health Care Surveys; Humans; legislation and jurisprudence; Life Support Care/ legislation & jurisprudence; Pediatric intensive care unit; Pediatrics/ legislation & jurisprudence; Withholding Treatment; Withholding Treatment/ legislation & jurisprudence
INTRODUCTION: The possibility of sustaining life functions makes it difficult to distinguish between a dying patient and a patient with chances of survival, raising a dilemma for everyone around them. On the one side, continuing with life support techniques that would only extend an irreversible process and result in physical and psychological damage and harm their dignity. On the other side, withholding or withdrawing life support without an adequate reflection and diagnostic-therapeutic effort which may lead to the death of a potentially recoverable child. In addition, making decisions in this context implies facing barriers that hinder the possibility of pursuing the patient's best interest. Among such barriers, the fear of litigation plays a major role. To what extent is this fear justified? OBJECTIVE: To explore the opinions of the members of the National Judiciary regarding the approach to withholding or withdrawing of life support from a legal stance. POPULATION AND METHODS: Professionals working in the criminal, civil and forensic medicine settings. Semistructured survey on three hypothetical case histories that implied making a decision to withhold or withdraw life support. RESULTS: One hundred and eighty-five surveys were distributed; 68 (36.76%) were partially completed and 51 (30.3%), in full. Twenty-eight (55%) survey respondents did not criminalize any of the three cases presented. Thirteen (25%) respondents considered that the decisions made in the three cases constituted a crime; 6 (12%), only in one case; and 4 (8%), in two out of the three. Crimes described by survey respondents included intentional homicide, wrongful death, and failure to render assistance. CONCLUSIONS: Forty-five percent of survey respondents considered that decisions made involved some form of crime.
2016-08
Selandari JO; Ciruzzi MS; Roitman AJ; Ledesma F; Menendez C; Garcia HO
Archivos Argentinos De Pediatria
2016
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<a href="http://doi.org/10.5546/aap.2016.298" target="_blank" rel="noreferrer">10.5546/aap.2016.298</a>
Palliative care of children with brain tumors: a parental perspective
adolescent; Child; Female; Humans; infant; Male; Young Adult; Palliative Care; home care services; Adult; Parents; Middle Aged; Attitude to Death; Qualitative Research; Focus Groups; Activities of Daily Living; Spirituality; Practice; Preschool; Adaptation; Psychological; Attitudes; Brain neoplasms; Health Knowledge; PEDI Study
OBJECTIVE: To explore the end-of-life experience of children with brain tumors and their families. DESIGN: Qualitative analysis of focus group interviews. SETTING: Children's Hospital, London Health Sciences Center. PARTICIPANTS: Twenty-five parents of 17 children who had died of brain tumors. INTERVENTION: Parents participated in 3 semistructured focus group interviews. MAIN OUTCOME MEASURES: Themes identified through thematic analysis of interview transcripts. RESULTS: Qualitative analysis identified 3 primary themes. (1) Parents described the dying trajectory of their child as characterized by progressive neurologic deterioration, with the loss of the ability to communicate as a turning point. Parental coping mechanisms included striving to maintain normality and finding spiritual strength through maintaining hope and in the resilience of their child. (2) Parental struggles during this phase included balancing competing responsibilities and speaking with their child about death. (3) Barriers to achieving a home death included suboptimal symptom management, financial and practical hardships, and inadequate community support. A fourth, secondary theme concerned the therapeutic benefits of the interview. CONCLUSION: The neurologic deterioration that characterizes the dying trajectory of children with brain tumors may create significant challenges for health care professionals and the children's parents, supporting the need for increased awareness of the distinct issues in the palliative care of children with brain tumors and for early anticipatory guidance provided for families.
2010-03
Zelcer S; Cataudella D; Cairney A; Elizabeth L; Bannister SL
Archives Of Pediatrics & Adolescent Medicine
2010
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Journal Article
<a href="http://doi.org/10.1001/archpediatrics.2009.284" target="_blank" rel="noreferrer">10.1001/archpediatrics.2009.284</a>
Shifting place of death among children with complex chronic conditions in the United States, 1989-2003
Child; Female; Humans; infant; Male; Attitude to Death; adolescent; Preschool; infant; Newborn; retrospective studies; United States/epidemiology; Chronic Disease/mortality; Hospitals/statistics & numerical data; Palliative Care/statistics & numerical data; Residence Characteristics/statistics & numerical data; Terminally Ill/statistics & numerical data
CONTEXT: The place where children with complex chronic conditions are dying may be shifting toward residential homes due to the evolving epidemiology of life-threatening childhood conditions, advances in home-based medical technology, and changes in attitudes about pediatric palliative care and hospice services. OBJECTIVES: To determine whether pediatric deaths attributed to complex chronic conditions are increasingly occurring in the home and to assess race and ethnicity disparities in the location of death. DESIGN, SETTING, AND PARTICIPANTS: Retrospective national-level case series drawn from the National Center for Health Statistics' Multiple Cause of Death Files spanning 1989-2003. Participants included all deceased individuals aged 19 years or younger with a complex chronic condition excluding injury and noncomplex chronic conditions (as classified by International Classification of Diseases, Ninth Revision or International Classification of Diseases, Tenth Revision). MAIN OUTCOME MEASURE: Place where death occurred. RESULTS: Among the 22.1% of deaths (198 160 of 896 509 total deaths) attributed to a complex chronic condition between 1989 and 2003, the percentage of individuals dying at home increased significantly (P<.001) over time for infants (aged <1 year) (4.9% in 1989 and 7.3% in 2003); 1- to 9-year-olds (17.9% and 30.7%); and for 10- to 19-year-olds (18.4% and 32.2%). Adjusting for decedent characteristics, the odds of dying at home increased significantly each year (odds ratio, 1.04; 95% confidence interval, 1.03-1.04) and were reduced among both black and Hispanic decedents (odds ratio, 0.50; 95% confidence interval, 0.48-0.52 and odds ratio, 0.52; 95% confidence interval, 0.50-0.54, respectively) compared with white decedents. CONCLUSIONS: Children who die with underlying complex chronic conditions increasingly are dying at home. Racial and ethnic disparities regarding place of death may represent important limitations and opportunities for improvement in the current systems of pediatric chronic and palliative care.
2007
Feudtner C; Feinstein JA; Satchell M; Zhao H; Kang T
Journal Of The American Medical Association
2007
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Journal Article
<a href="http://doi.org/10.1001/jama.297.24.2725" target="_blank" rel="noreferrer">10.1001/jama.297.24.2725</a>
Symptoms in the palliative phase of children with cancer
adolescent; Child; Female; Humans; infant; Male; retrospective studies; Palliative Care; Neoplasms; Pain; Pain Management; Terminal Care; Physician-Patient Relations; Parent-Child Relations; Parents; Emotions; Questionnaires; Attitude to Death; Professional-Family Relations; social support; Age Factors; caregivers; Fatigue; Fear; Anorexia; Leukemia; Treatment Failure; Gastrointestinal Diseases; Stress; Preschool; Psychological; Brain neoplasms; Mobility Limitation
BACKGROUND: The aim of the study was to make a comprehensive inventory of the physical, psychological, and social symptoms of children with cancer and their parents during the palliative phase and the extent to which health professionals address those symptoms. PROCEDURE: Forty parents of children who died 1-3 years prior to data collection (structured questionnaire) were invited to participate in the study. RESULTS: The response rate was 32 out of 40 parents (80%). Most frequently mentioned physical symptoms were pain, poor appetite, and fatigue. The children's most mentioned psychological symptoms were sadness, difficulty in talking to their parents about their feelings regarding illness and death and fear of being alone. The symptoms of fear of death of the child and fear of physical symptoms were most frequently mentioned parents' psychological symptoms. Health professionals addressed 82% of the children's physical symptoms, 43% of the children's psychological symptoms, and 56% of the parents' psychological symptoms. Parents indicated that after professional attention the proportion of children's physical symptoms that were completely or partially resolved was 18 and 26%, respectively. For children's psychological symptoms the figures were 9 and 25%, respectively, and for parents' psychological symptoms 2 and 23%, respectively. CONCLUSIONS: The burden of symptoms of the child with cancer during the palliative phase and their parents is high. Health professionals focus mainly on the physical symptoms of the child. Relief of symptoms could not be achieved for a large proportion of symptoms. Further prospective research is necessary to investigate the kind, frequency and intensity of symptoms in order to tailor optimal palliative care to the needs of both child and parent.
2007-08
Theunissen JMJ; Hoogerbrugge PM; van Achterberg T; Prins JB; Vernooij-Dassen M; van den Ende CHM
Pediatric Blood & Cancer
2007
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Journal Article
<a href="http://doi.org/10.1002/pbc.21042" target="_blank" rel="noreferrer">10.1002/pbc.21042</a>
Factors influencing parental readiness to let their child with cancer die
Child; Female; Humans; Male; Grief; Adult; Parent-Child Relations; Middle Aged; Attitude to Death; Professional-Family Relations; adolescent; Preschool; infant; Parents/psychology; Parent caregivers; Neoplasms/psychology; Attitude to Death; Grief; Professional-Family Relations; Neoplasms/psychology; Parents/psychology
BACKGROUND: One in four cases of childhood cancer is incurable. In these cases death can usually be anticipated and therefore preceded by a phase of palliative care. For parents, preparing to let their child die is an extraordinarily painful process. Most struggle to preserve their child. This study identified, from a parental perspective, the main factors that influence the transition from preserving life to letting go. PROCEDURE: A multi-centre, qualitative research, study was undertaken during the end-of-life (EoL) phase, comprising single or repeated interviews with 44 parents of 23 children with incurable cancer. RESULTS: We discovered that uncertainty, fragmentation and anxiety underpin the preserving life perspective. A perspective of letting go could be supported by a variety of factors. These included: Certainty that the child cannot be cured, postponed grief, the perception of suffering, the ability to disentangle needs and the ability to parent meaningfully. Hope, creating a peaceful parent-child relationship, and the attitude of professionals, could support movements in either direction. Of these, certainty, and in most cases postponed grief, were pre-conditions for the transition towards letting go. Strategies such as not challenging the parents' suppression of grief, creating certainty about the child's condition and supporting parents in efforts to redefine their parental role, supported progress towards accepting a letting go perspective. CONCLUSIONS: Parents' internal struggle between a preserving frame of mind and one of letting go is influenced by a combination of factors. However, professionals can influence some of these factors in order to facilitate this transition.
Kars MC; Grypdonck MH; Beishuizen A; Meijer-van den Bergh EM; van Delden JJ
Pediatric Blood & Cancer
2010
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Journal Article
<a href="http://doi.org/10.1002/pbc.22532" target="_blank" rel="noreferrer">10.1002/pbc.22532</a>
Death by request in the Netherlands: facts, the legal context and effects on physicians, patients and families
Humans; Attitude of Health Personnel; Euthanasia; Netherlands; Religion and Medicine; Suicide; Active; Attitude to Death; Euthanasia; Physicians/px [Psychology]; Suicide; Assisted/es [Ethics]; Assisted/lj [Legislation & Jurisprudence]; Assisted/px [Psychology]; Ethical Review/lj [Legislation & Jurisprudence]; Physician Assisted Dying PAD; Voluntary/es [Ethics]; Voluntary/lj [Legislation & Jurisprudence]; Voluntary/px [Psychology]
2010
Kimsma GK
Medicine, Health Care And Philosophy
2010
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Journal Article
<a href="http://doi.org/10.1007/s11019-010-9265-0" target="_blank" rel="noreferrer">10.1007/s11019-010-9265-0</a>
Factors associated with congruence between preferred and actual place of death
Female; Humans; Male; Terminal Care; Ethnic Groups; Aged; Attitude to Death; Death; Hospices; Environment; Hospitals; social support; location of death
Congruence between preferred and actual place of death may be an essential component in terminal care. Most patients prefer a home death, but many patients do not die in their preferred location. Specialized (physician, hospice, and palliative) home care visits may increase home deaths, but factors associated with congruence have not been systematically reviewed. This study sought to review the extent of congruence reported in the literature and examine factors that may influence congruence. In July 2009, a comprehensive literature search was performed using MEDLINE, PsychInfo, CINAHL, and Web of Science. Reference lists, related articles, and the past five years of six palliative care journals were also searched. Overall congruence rates (percentage of met preferences for all locations of death) were calculated for each study using reported data to allow cross-study comparison. Eighteen articles described 30%-91% congruence. Eight specialized home care studies reported 59%-91% congruence. A physician-led home care program reported 91% congruence. Of the 10 studies without specialized home care for all patients, seven reported 56%-71% congruence and most reported unique care programs. Of the remaining three studies without specialized home care for all patients, two reported 43%-46% congruence among hospital inpatients, and one elicited patient preference "if everything were possible," with 30% congruence. Physician support, hospice enrollment, and family support improved congruence in multiple studies. Research in this important area must consider potential sources of bias, the method of eliciting patient preference, and the absence of a single ideal place of death.
2010
Bell CL; Somogyi-Zalud E; Masaki KH
Journal Of Pain And Symptom Management
2010
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Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2009.07.007" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2009.07.007</a>