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1.
Am J Hosp Palliat Care ; : 10499091241284262, 2024 Sep 10.
Artigo em Inglês | MEDLINE | ID: mdl-39254988

RESUMO

CONTEXT: For many, the perception of "hospice" is synonymous with "death." Even clinicians struggle to have conversations that distinguish between hospice and palliative care for fear that discussing hospice may diminish hope. To date, there are no existing measurement tools to evaluate patient and family perceptions of hospice care. OBJECTIVE: This research aimed to develop a Hospice Perceptions Instrument (HPI) to capture these perceptions among diverse patients and families. METHODS: Building on previous studies and literature, 79 potential items were drafted for the instrument. Our interprofessional team independently and collectively evaluated these, resulting in 36 items rated on a 5-point Likert scale. Overarching domains include (1) hospice philosophy and definitions; (2) hospice services; (3) values; and (4) counter-perceptions. Sixteen national subject matter experts from various professions and roles were invited to participate in the content-validity index and five hospice caregivers were invited to participate in face validity. RESULTS: Fourteen experts responded, with ten meeting inclusion criteria: one physician, four nurses, three social workers, and two chaplains. Six of the ten identified as Black. Three items were removed (I-CVI ranged from 0.5-06), and nine items were revised (I-CVI ranged from 0.6-07). The overall Content Validity Index (CVI) was 0.83, indicating excellent content validity. After revisions, five hospice caregivers assessed face validity and no changes were made based on feedback. CONCLUSION: Results reveal a disconnect between professional expertise and patient/family voices related to hospice perceptions. Development of this instrument invites a better understanding of perceptions leading to new opportunities for patient/family engagement.

2.
Support Care Cancer ; 32(6): 348, 2024 May 14.
Artigo em Inglês | MEDLINE | ID: mdl-38743085

RESUMO

PURPOSE: Describe spirituality's role in a sample of Hispanic adolescent and young adult (AYA) cancer survivors. METHODS: This phenomenology-informed convergent parallel mixed-methods study aimed to explore participants' lived experiences with hope during cancer treatments and cancer survivorship. A purposive sample of Hispanic AYAs who completed cancer treatments 2-5 years ago were virtually recruited for participation. Participants completed virtual semi-structured interviews about their experiences with hope during cancer treatments and cancer survivorship and prepared narratives about their experiences. Thematic analyses were iteratively performed across the data set to identify final themes. RESULTS: Ten Hispanic AYA cancer survivors (mean age 30.2, SD = 4.5) years participated in this pilot study. Seven participants (70%) were female, and three participants (30%) were male. Six participants (60%) experienced non-hematologic malignancies, and four participants (40%) experienced hematologic malignancies. Eight (80%) participants' language preference was Spanish, while two (20%) participants' language preference was English. The theme spirituality and subthemes living by faith, god as a resource, and spiritual gratitude were identified as concepts participants linked to their conceptualization of hope during cancer treatment and survivorship. CONCLUSIONS: Hope and spirituality may be conceptually linked to coping behaviors among Hispanic AYA cancer survivors. Hope through faith may be a learned spiritual value in Hispanic AYAs and might play a role in their spiritual and cognitive development. Further research is needed to explore the potentially protective value of hope and spirituality for the Hispanic AYA population.


Assuntos
Sobreviventes de Câncer , Hispânico ou Latino , Espiritualidade , Adolescente , Adulto , Feminino , Humanos , Masculino , Adulto Jovem , Adaptação Psicológica , Sobreviventes de Câncer/psicologia , Hispânico ou Latino/psicologia , Esperança , Neoplasias/psicologia , Neoplasias/terapia , Projetos Piloto , Pesquisa Qualitativa
3.
Semin Oncol Nurs ; 40(3): 151648, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38692968

RESUMO

OBJECTIVES: The aim of this completed pilot study was to evaluate the feasibility of implementing a family management program (FMP) for parents of children with acute lymphoblastic leukemia (ALL). DATA SOURCES: A convenience sample of 11 parents of preschool-aged children with ALL were recruited from an ambulatory chemotherapy-care clinic at a tertiary hospital in Thailand. Participants received three FMP sessions over 3 weeks. The FMP is based on two established family programs (ie, FMP-style framework and building on family strengths) and reviewed literature. The following measures were used to evaluate parents' responses at baseline, postintervention, and follow-up: Family Management Measure, Beach-Center Family Quality-of-Life Scale, and Pediatric Quality of Life Inventory. Data were analyzed using one-way repeated-measures analysis of variance. CONCLUSION: The study results provide promising evidence that the FMP is feasible and improves family management and quality of life for parents of enrolled children with ALL. IMPLICATIONS FOR NURSING PRACTICE: Educating pediatric oncology nurses and other healthcare professionals to replicate the FMP may help to provide better family management, and child quality of life support to future parents and other family members of young children diagnosed with ALL. This support should focus on educating parents about the potential effects of caring for a child with ALL on the family and fostering positive relationships within the family and offering guidance on effective family communications and decision-making processes.


Assuntos
Pais , Leucemia-Linfoma Linfoblástico de Células Precursoras , Qualidade de Vida , Humanos , Projetos Piloto , Leucemia-Linfoma Linfoblástico de Células Precursoras/enfermagem , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Feminino , Masculino , Pré-Escolar , Pais/psicologia , Pais/educação , Adulto , Tailândia , Criança , Pessoa de Meia-Idade , Estudos de Viabilidade
4.
J Hosp Palliat Nurs ; 26(2): 60-67, 2024 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-38227778

RESUMO

The untimely death of a child is an incredibly traumatic experience for parents and their loved ones. It uproots every aspect of their life, leading the bereaved parents to be far more likely to have poorer physical and mental health outcomes. This traumatic form of bereavement should have comprehensive grief-focused, high-quality interventions available for parents and extended family members. The purpose of this rapid review was to explore and describe the bereavement interventions available for parents and family that have been published within the past 5 years. Records identified 123 full-text articles that were reviewed, and 14 of those were included for data extraction and synthesis, using Cochrane Rapid Reviews Methods Group with the addition of keyword searches. The 14 articles were analyzed by evaluating description of bereaved parents, accessibility of interventions, who delivered interventions, and the type and delivery time of interventions. Four types of interventions were identified, including Web-based, community-based, hospital-based, and psychotherapy interventions. This rapid review has implications for clinical practice, research, and health care policy that can increase the availability of support and quality of interventions for bereaved parents and family members.


Assuntos
Luto , Pais , Humanos , Política de Saúde , Pais/psicologia , Apoio Social
5.
Nurs Res ; 73(2): 166-171, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38112626

RESUMO

BACKGROUND: Intervention fidelity is a critical element of randomized controlled trials, yet reporting of intervention fidelity among attention control arms is limited. Lack of fidelity to attention control procedures can affect study outcomes by either overestimating or underestimating the efficacy of the intervention under examination. OBJECTIVES: This brief report describes the approach researchers took to promote fidelity to the attention control arm of a pediatric palliative care randomized controlled trial funded by the National Institutes of Health. METHODS: The Informational Meetings for Planning and Coordinating Treatment trial aims to determine the efficacy of a communication intervention that uses care team dyads (i.e., physicians partnered with nurses or advanced practice providers) to engage parents of children with cancer who have a poor prognosis in structured conversations about prognostic information, goals of care, and care planning. The intervention is compared with an attention control arm, which provides parents with structured conversations on common pediatric cancer education topics, such as talking to their child about their cancer, clinical trials, cancer treatment, side effects, and so forth. National Institutes of Health guidelines for assessing and implementing strategies to promote intervention fidelity were used to design (a) the attention control arm of a randomized controlled trial, (b) related attention control arm training, and (c) quality assurance monitoring. RESULTS: Attention control study procedures were designed to mirror that of the intervention arm (i.e., same number, frequency, and time spent in study visits). Cluster randomization was used to allocate care team dyads to one arm of the randomized controlled trial. Care team dyads assigned to the attention control arm participated in online training sessions to learn attention control procedures, the different roles of research team members, and quality assurance methods. Fidelity to attention control procedures is assessed by both the interveners themselves and a quality assurance team. DISCUSSION: Study design, training, and delivery are all critical to attention control fidelity. Baseline training often needs to be supplemented with booster training when time gaps occur between study start-up and implementation. Quality assurance procedures are essential to determine whether interveners consistently deliver attention control procedures correctly.


Assuntos
Comunicação , Pais , Humanos , Criança , Cuidados Paliativos , Projetos de Pesquisa , Ensaios Clínicos Controlados Aleatórios como Assunto
6.
Cancer Nurs ; 47(1): 12-19, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-36624566

RESUMO

BACKGROUND: Symptom distress is related to decreased quality of life (QOL) among children with cancer, with high levels of pain, nausea, and anxiety reported. Creative arts therapy (CAT) has been related to improved QOL and symptoms in pediatric oncology, but the quality of evidence is mixed. OBJECTIVE: This article aims to examine the QOL symptom subscales in relation to CAT over time in children during the first year of cancer treatment. METHODS: A secondary analysis of prospective data was performed with linear mixed modeling on 267 observations with predictors of 2 groups: No CAT (n = 18) vs CAT (n = 65). The covariate of time (6 months) was used to explore the CAT relationship with the Pediatric Quality of Life Inventory (PedsQL) symptom subscales (pain and hurt, nausea, procedural anxiety, treatment anxiety, worry, cognitive problems, perceived physical appearance, and communication). RESULTS: Children (n = 83) were between 3 and 17 years old (M = 6), 51.2% female, and 32% minority. All tumor types were represented: liquid (37.3%), solid (24.1%), and central nervous system (38.6%). Reduced child report of procedural anxiety was significantly related to receiving CAT with a medium magnitude of association (adjusted effect size = 0.58, P = .01). CONCLUSION: Creative arts interventions were associated with a longitudinal improvement in anxiety in children with cancer. Further work is needed to target interventions to the appropriate specific burdensome symptoms. IMPLICATION FOR PRACTICE: Pediatric oncology nurses can advocate for CAT as an effective intervention to ameliorate the burdensome procedural anxiety experienced by patients.


Assuntos
Neoplasias , Qualidade de Vida , Criança , Humanos , Feminino , Pré-Escolar , Adolescente , Masculino , Qualidade de Vida/psicologia , Avaliação de Sintomas , Estudos Prospectivos , Neoplasias/complicações , Neoplasias/terapia , Neoplasias/psicologia , Dor , Ansiedade/etiologia , Ansiedade/terapia , Náusea
7.
J Pediatr Hematol Oncol Nurs ; 40(4): 245-258, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37063060

RESUMO

Hope's role in the care of adolescents and young adults (AYAs) who have advanced cancer (AC) is not well understood. This study aimed to conceptualize the essence of hope among AYAs who have AC based on their lived experiences and illustrate hope through verbal and artistic depictions of the AYA's lived experiences. Fifteen AYAs, aged 12 to 21 years, diagnosed with AC completed two semistructured interviews to share their lived experiences of hope perspectives in the form of a descriptive narrative and a creative-art outcome. Participants who chose to draw pictures narrated the conceptual meanings based on elements of each picture. A board-certified art therapist performed a post hoc analysis of the drawings and participants' verbatim descriptions of their meanings. Five of the 15 AYA participants created drawings depicting their lived experiences of hope. The artistic process of mapping their cancer journey revealed distinct views of hope through nature landscapes and metaphors. Participants provided titles for their drawings such as "Over the Rainbow," "Growth in the Valley," and "The Light at the End of the Tunnel." The pictures embodied the AYAs' thoughts, perceptions, and lived experiences related to hope and its role during their cancer journey. Drawing is one simple art form that can facilitate an AYA's expression of well-being (including hope) beyond what may be verbally articulated. Creative art should be further researched as a screening tool to assess how AYAs with AC cope with an uncertain future and psychological and/or existential distress symptoms.


Assuntos
Arteterapia , Neoplasias , Adolescente , Humanos , Adulto Jovem , Neoplasias/terapia , Criança
8.
Am J Hosp Palliat Care ; 40(1): 34-42, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-35535490

RESUMO

BACKGROUND: Recurrent or refractory cancer often results in substantial and extensive physical, emotional, psychosocial, and spiritual burdens for children and their families. However, the therapeutic benefits of legacy interventions in children with recurrent or refractory cancer have been examined only recently, with limited attention to specific effects on children's coping abilities. OBJECTIVE: The purpose of this study was to determine the effects of a digital storytelling-legacy intervention on the adaptive coping of children with recurrent or refractory cancer. METHODS: This study used a 2-arm randomized, waitlist-controlled trial design. A total of 150 children with recurrent or refractory cancer and their parents were recruited via Facebook advertisements. RESULTS: The analysis sample included 92 dyads (35-intervention group, 57-control group). The legacy intervention showed small and statistically nonsignificant effects on primary-control and disengagement coping strategies among children with recurrent or refractory cancer. CONCLUSIONS: Legacy interventions using readily accessible digital storytelling have the potential to enhance the adaptive coping skills among children with recurrent or refractory cancer. Further research should determine how to enhance interventions tailored to this population to optimize the benefits.


Assuntos
Adaptação Psicológica , Neoplasias , Criança , Humanos , Pais/psicologia , Neoplasias/terapia , Neoplasias/psicologia , Emoções , Internet
9.
J Hosp Palliat Nurs ; 24(4): 225-231, 2022 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-35550435

RESUMO

Heart failure affects an estimated 6.2 million adults in the United States. African Americans have a higher incidence of heart failure at an earlier age and more rapid disease progression than other ethnicities. African Americans also often receive lower-quality, end-of-life care and less often receive palliative and advanced-care planning than Whites. Several barriers exist for effective heart failure evaluation and treatment among African Americans, including ineffective patient-provider communication, mistrust, health care providers' lack of understanding of palliative care services, and potential downstream effects of social determinants of health (eg, access barriers to healthy food and community health promotion resources). Despite the recognized benefits of palliative care, few adults with heart failure are receiving early discussions about palliative and advanced care planning to ensure delivery of goal-concordant care. This article presents a fictitious case study focused on an African American woman, Ms T, with heart failure who has been given 6 months to live. Racial inequities are presented surrounding Ms T's inadequate access to necessary health care resources and in receiving delayed communication about palliative and advanced care services. The case study also highlights ethical principles of concern, the role of an interdisciplinary team approach for patients with heart failure, and the advocacy role of nurses.


Assuntos
Insuficiência Cardíaca , Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Adulto , Negro ou Afro-Americano , Feminino , Insuficiência Cardíaca/complicações , Insuficiência Cardíaca/terapia , Humanos , Cuidados Paliativos , Estados Unidos
10.
J Pediatr Hematol Oncol Nurs ; 39(3): 178-184, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35467436

RESUMO

Background: Researchers and clinicians must collaborate to consider alternative approaches to conduct standard protocol activities and deliver interventions during the pandemic. The COVID-19 pandemic has required researchers at many institutions to modify traditional in-person research to virtually delivered activities and still adhere to healthcare ethical principles of beneficence, justice, and respect for persons. Our objective is to describe ethical considerations faced by nurse investigators who modified research conducted in pediatric oncology during the COVID-19 pandemic. Methods Review of research case examples. Results Two research study case examples are presented, including remote-participant recruitment via Facebook advertising and a virtually delivered web-based legacy intervention in a pediatric oncology randomized clinical trial. Challenges to modifying in-person approaches to remote strategies are also discussed, with examples of advantages and disadvantages presented from a study testing a human-animal interaction intervention for children with cancer. Discussion Our case information may assist other investigators in planning virtually delivered behavioral strategies for populations that may prefer the convenience of remote participation in research studies because of multiple family responsibilities in the care of a family member, during the pandemic and after. As researchers understand more about subjects' preferences to receive protocol activities (i.e., virtual vs. in-person delivery), they may be able to reduce risks of being unable to collect data because eligible subjects declined or withdrew from a study due to multiple-home responsibilities during the care of a family member with a serious or life-limiting condition.


Assuntos
COVID-19 , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Humanos , Neoplasias/terapia , Cuidados Paliativos , Pandemias
11.
J Pain Symptom Manage ; 63(4): 581-589, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-34890726

RESUMO

OBJECTIVES: 1. Describe the concept of hope based on perspectives of AYAs who experienced advanced cancer. 2. Differentiate the role hope has for AYAs before, during, and after experiencing cancer. CONTEXT: In clinical care, addressing patients' hopes may stimulate conversations about their goals, concerns, and values; helping clinicians focus on patient-centered interventions to support the patient's psychological, spiritual, and existential needs. METHODS: This descriptive qualitative study used a phenomenology informed approach to depict experiences with hope by AYAs who have advanced cancer. The participants completed two semi-structured audio-recorded virtual interviews and co-created narratives and drawings about the role of hope before, during, and after experiencing cancer. Thematic analyses were performed on the narratives. RESULTS: Fifteen AYAs aged 12-21 years were recruited from an academic medical center and an online non-profit organization. During data collection participants had either completed treatments (60%), or were actively receiving treatments (40%). Approximately 67% of the sample experienced at least one relapse. A main theme identified from the narratives was Transitions of Hope. Participants described differences in their hope before and after experiencing cancer. Participants who experienced a relapse reported their past experiences helped them build hope during their relapse. Participants described a new sense of purpose after experiencing cancer, such as starting a non-profit organization, giving back to others, doing "what I'm passionate about", and honoring the legacies of others. CONCLUSION: Transitions in the role of hope occurred over time, becoming a source of mental sustenance during cancer treatment, and a source of altruism after experiencing cancer. This study adds to the understanding of hope for AYAs who have advanced cancer.


Assuntos
Neoplasias , Adolescente , Comunicação , Humanos , Narração , Neoplasias/psicologia , Neoplasias/terapia , Pesquisa Qualitativa , Recidiva , Adulto Jovem
12.
Prog Palliat Care ; 29(5): 264-271, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34737490

RESUMO

Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can help address these recruitment challenges for pediatric palliative care clinical trials. This study (a) describes Facebook recruitment procedures targeting children with cancer and their parents for a pediatric palliative intervention randomized clinical trial, (b) reports recruitment results, and (c) discusses successful strategies to recruit pediatric populations via Facebook advertisements. Researchers used Facebook advertisements to recruit children with advanced cancer (aged 7 to 17 years) for a web-based legacy intervention. Between years 2015 and 2018, our research team enrolled 150 child-parent dyads (N= 300) to participate in the web-based legacy program. Results suggest that Facebook advertisements can be a successful tool to access and recruit pediatric populations with life-threatening conditions. Further research is needed to determine how innovative social-media recruitment strategies could be used in other populations of patients with serious illnesses and their caregivers to further advance the science in palliative care.

13.
J Child Neurol ; 36(10): 901-910, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34048290

RESUMO

BACKGROUND: The objective of this qualitative methods study was to develop the domains and items to support the content validity for the Pediatric Quality of Life Inventory (PedsQL) Multiple Sclerosis Module for youth with pediatric-onset multiple sclerosis. METHODS: A literature review of multiple sclerosis-specific questionnaires and clinical research was conducted to generate domains. An expert panel composed of 12 neurologists who were pediatric-onset multiple sclerosis specialists provided feedback on the conceptual framework. Focus interviews with 9 youth with pediatric-onset multiple sclerosis and 6 parents were conducted to develop the relevant domains and item content from the patient and parent perspective. In the cognitive interviews phase, 9 youth with pediatric-onset multiple sclerosis and 6 parents provided feedback on item content, relevance, importance, and understandability of the pediatric-onset multiple sclerosis-specific domains and items. The final interview phase with 5 youth with pediatric-onset multiple sclerosis and 5 parents comprised a pilot testing of the new PedsQL MS Module. RESULTS: Eighteen domains were derived from the qualitative methods with item content saturation achieved at 100 items based on 40 interviews with 23 youth with pediatric-onset multiple sclerosis aged 10-21 years and 17 parents. The domains derived include general fatigue, sleep/rest fatigue, cognitive functioning, tingling sensations, numbness sensations, physical weakness, pain, speech, balance, fine motor, vision, urination, constipation, bowel incontinence, worry, communication, treatment, and medicines. CONCLUSIONS: Qualitative methods involving 23 youth with pediatric-onset multiple sclerosis and 17 parents in the domain and item development process support the content validity for the new PedsQL MS Module. Future plans include a national field test of the PedsQL MS Module scales and items.


Assuntos
Esclerose Múltipla/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Reprodutibilidade dos Testes , Adulto Jovem
14.
Oncol Nurs Forum ; 48(3): 309-316, 2021 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-33855995

RESUMO

OBJECTIVES: To examine the effects of a legacy intervention for children with advanced cancer and their parents on parental coping strategies. SAMPLE & SETTING: The authors recruited 150 children with advanced cancer and their parents via Facebook. METHODS & VARIABLES: Child-parent dyads were randomly assigned to the intervention or usual care. Children in the intervention group created electronic digital storyboards to assist in documenting their legacies. Parents completed the Responses to Stress Questionnaire at baseline/preintervention (T1) and postintervention (T2). Linear regressions were used to test for differences between the groups in the amount of change from T1 to T2 for each parent coping score. RESULTS: Although not statistically significant, the legacy intervention showed trends toward increasing use of primary control and disengagement coping strategies in parents over time relative to usual care. IMPLICATIONS FOR NURSING: Nurses can help to facilitate opportunities for parents to use adaptive coping strategies. More work is needed to determine how legacy interventions in pediatric oncology can facilitate adaptive coping strategies for parents of children with cancer.


Assuntos
Adaptação Psicológica , Neoplasias , Pais , Adulto , Criança , Humanos , Internet , Inquéritos e Questionários
15.
J Pain Symptom Manage ; 60(2): 417-421, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32315752

RESUMO

CONTEXT: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL). OBJECTIVES: To examine the effects of COMPLETE: a communication plan early through EOL to increase hospice enrollment in children with cancer at EOL. METHODS: This is a two-phase, single-arm, two-center, and prospective pilot study of hospice enrollment in children with cancer whose parents received COMPLETE. COMPLETE is a series of medical doctor (MD)/registered nurse (RN)-guided discussions of goals of care using visual aids that begin at diagnosis. COMPLETE training for MD/RNs in Phase II was revised to increase their use of empathy. Preintervention/postintervention measurements for child include: time of hospice enrollment, pain, high-intensity medical interventions at EOL, and location of death; and for parent the following: uncertainty and hope. RESULTS: Twenty-one parents of 18 children enrolled in the study, and 13 children were followed through EOL. At EOL, 11 (84.6%) died on home hospice or inpatient hospice, and only two (15%) received high-intensity medical interventions. Similar to published findings in the initial 13 parents enrolled in Phase I, parents in Phase II (n = 7) had improvement in hope and uncertainty, and child pain was decreased. Revised training resulted in significant improvement in MD/RN (N = 6) use of empathy (11% in Phase I vs. 100% in Phase II; P = 0.001). CONCLUSION: COMPLETE resulted in increased hospice enrollment in children with cancer at EOL compared with historical controls. In preanalysis/postanalysis, COMPLETE decreased child pain while supporting hope and reducing uncertainty in their parents.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Assistência Terminal , Criança , Comunicação , Morte , Humanos , Neoplasias/terapia , Projetos Piloto , Estudos Prospectivos
16.
Am J Hosp Palliat Care ; 36(12): 1124-1133, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31269799

RESUMO

AIMS: The purpose of this systematic literature review is to describe the interventions for bereaved parents, evaluate intervention effectiveness through study methodology rigor, replicability, and theoretical foundations. METHODS: We searched MEDLINE via PubMed (1966-2018), CINAHL (1937-present), PsycINFO (1887-present), and Embase (1947-present) using various search words and MeSH terms related to the study purpose. A blinded screening of title/abstract was performed, with conflicting inclusion decisions resolved through group discussions. Matrices for remaining articles were created and discussed among the team. The levels of evidence of the 9 records were rated from very low to high based on the Grading of Recommendations Assessment, Development, and Evaluation guidelines. RESULTS: Our initial pool included 1025 articles. After the screening of titles/abstracts, 63 articles were retained for full-text reviews. Evaluated based on the inclusion/exclusion criteria, 9 records met the review criteria. Of the 9 records, 1 was graded as very low, 3 low, and 5 low to moderate. The interventions for bereaved parents varied from using single-model interventions such as expressive arts therapy and telephone support to multimodal interventions that combined resources (ie, peer support, resource packets, and health-care support). Only 1 study explicitly illustrated how its bereavement intervention was designed based on the proposed theoretical model. CONCLUSIONS: This review highlights the need for individualized, well-tested, and effective bereavement care interventions to support bereaved parents. In summary, the state of the science on interventions for bereaved parents is poor and much work needs to be done to effectively address the needs of bereaved parents, including both their physical and emotional health needs.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Pais/psicologia , Luto , Cuidados Paliativos na Terminalidade da Vida/métodos , Humanos
17.
J Christ Nurs ; 36(3): E40-E42, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31180970

RESUMO

The oldest sins in Scripture and resultant fall of humankind relate to temptation, deception, coercion, and disobedience. These same ethical issues are ever-present in conducting research. The purpose of this article is to draw on lessons from Genesis to avoid the common pitfalls of the original sins when engaging in nursing research.


Assuntos
Cristianismo , Consentimento Livre e Esclarecido , Pesquisa em Enfermagem , Enfermagem Paroquial , Humanos
18.
Clin J Oncol Nurs ; 23(3): 295-300, 2019 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-31099799

RESUMO

BACKGROUND: Research on parent understanding of homecare management of external central venous access devices (CVADs) for children with cancer is limited. OBJECTIVES: The goal was to investigate whether the use of a DVD education intervention reduced adverse complications and improved parent education for homecare management of CVADs for pediatric patients with cancer. METHODS: Participants were randomized to an experimental group (DVD and nurse teaching) or a control group (nurse teaching). Postintervention evaluation included parent satisfaction and CVAD knowledge proficiency, blood infection rates, use of alteplase, and CVAD replacement. FINDINGS: Fifty-four enrolled caregiver-patient dyads completed the study measures, with 21 dyads assigned to the control group and 33 assigned to the experimental group. Alteplase was ordered significantly less often in the experimental group. No other findings were significant.


Assuntos
Serviços de Assistência Domiciliar/organização & administração , Neoplasias/tratamento farmacológico , Pais/educação , Educação de Pacientes como Assunto/métodos , Gravação em Vídeo , Adolescente , Antineoplásicos/administração & dosagem , Cuidadores/educação , Infecções Relacionadas a Cateter/prevenção & controle , Cateterismo Venoso Central/efeitos adversos , Cateterismo Venoso Central/métodos , Cateteres Venosos Centrais , Criança , Feminino , Hospitais Pediátricos , Humanos , Masculino , Neoplasias/diagnóstico , Segurança do Paciente , Análise e Desempenho de Tarefas , Centros de Atenção Terciária
19.
J Pediatr Oncol Nurs ; 36(3): 178-190, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30939966

RESUMO

The purpose of this study was to describe pediatric oncology nurse managers' (NMs) perspectives of palliative care/end-of-life (PC/EOL) communication. The study, guided by group-as-a-whole theory and empirical phenomenology, was part of a larger, multisite study aimed at understanding pediatric oncology nurses' experiences of PC/EOL communication. Nurses were assigned to focus groups based on length or type of experience (i.e., nurses with <1, 2-5, or >5 years' work experience and NMs). Eleven NMs from three Midwestern pediatric hospitals with large oncology programs participated in one focus group. The participants' mean years of experience was 15.8 in nursing and 12 in pediatric oncology; 90% had a BSN or higher degree; all had supervisory responsibilities. The authors identified 2,912 meaning statements, which were then analyzed using Colaizzi's method. Findings include NMs' overall experience of "Fostering a Caring Climate," which includes three core themes: (1) Imprint of Initial Grief Experiences and Emotions; (2) Constant Vigilance: Assessing and Optimizing Family-Centered Care; and (3) Promoting a Competent, Thoughtful, and Caring Workforce. Findings indicate that pediatric oncology NMs draw on their own PC/EOL experiences and their nursing management knowledge to address the PC/EOL care learning needs of nursing staff and patient/family needs. NMs need additional resources to support nursing staff's PC/EOL communication training, including specific training in undergraduate and graduate nursing programs and national and hospital-based training programs.


Assuntos
Comunicação , Neoplasias/enfermagem , Enfermeiros Administradores/psicologia , Enfermagem Oncológica , Cuidados Paliativos/psicologia , Assistência Terminal/psicologia , Adulto , Feminino , Grupos Focais , Humanos , Pessoa de Meia-Idade
20.
Cancer Nurs ; 42(4): E22-E30, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-29620556

RESUMO

BACKGROUND: Parents of children diagnosed with cancer may experience decision regret about cancer treatment decisions and dissatisfaction with the perceived clarity in information received from their child's providers. OBJECTIVE: The aim of this study was to describe parental perspectives about receiving an early palliative care and end-of-life (PC/EOL) communication intervention titled "Communication Plan: Early through End of Life Intervention" (COMPLETE) from an interprofessional team of physician and registered nurse providers. METHODS: Ten parents participated in semistructured interviews after receiving the COMPLETE intervention. The COMPLETE intervention included 3 sessions delivered shortly after diagnosis and at the next 2 cancer treatment evaluations. Sessions of COMPLETE focused on early PC/EOL care discussions at diagnosis and after tumor response evaluations with their child's providers. RESULTS: Results included 2 theme categories: (1) COMPLETE nurtures realistic hope and meaningful dialogue by parents connecting with healthcare providers as a dyad, and (2) benefits of COMPLETE helped parents to make informed decisions. In addition, there were offered suggestions to improve COMPLETE. CONCLUSION: The COMPLETE intervention provided a unique mechanism to foster early discussions about PC/EOL options between parents and an interprofessional team during the first 6 months of the child's cancer treatment. Future study is needed using a randomized clinical control-group design to evaluate COMPLETE with a large sample of parents. IMPLICATIONS FOR PRACTICE: Findings provide promising evidence of parents' preference and receptivity to receive early information about PC/EOL care options for a child with a brain tumor with a poor prognosis. The COMPLETE intervention provided a mechanism to help encourage parental consideration of realistic hoped-for goals for their child's condition and care.


Assuntos
Cuidados para Prolongar a Vida/psicologia , Neoplasias/psicologia , Pais/psicologia , Assistência Terminal/psicologia , Adulto , Atitude Frente a Morte , Neoplasias Encefálicas/psicologia , Criança , Pré-Escolar , Tomada de Decisões , Feminino , Assistência Domiciliar/psicologia , Humanos , Lactente , Masculino , Cuidados Paliativos/psicologia , Relações Profissional-Família , Assistência Terminal/métodos
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