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1.
Hum Reprod ; 39(8): 1591-1598, 2024 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-38890127

RESUMO

In medically assisted reproduction (MAR) success has mostly been measured in terms of achieving (healthy) livebirths. We argue this focus is too narrow and that success should be measured in terms of alleviating patient suffering caused by an unfulfilled child wish. The major implication is that clinics must better tailored care to effectively support patients who do not have child(ren) with treatment. First, we argue that clinics have a duty of care towards patients for whom MAR does not result in children because this is a common treatment outcome, because treatment is burdensome and creates new losses for patients, and because the field has the necessary expertise to provide support and it is part of patient-centred care. Then, we examine concerns about the adequacy of addressing the possibility that treatment may end without children, namely, that this may hinder patients' hope and put them off doing treatment, and that it may be perceived as a sign of clinical incompetence, as well as concerns about the required skill set. We end with a set of research-informed recommendations to promote healthy adjustment to ending fertility treatment without children. These focus on the need to reconceptualize 'success' and 'failure' in MAR, to promote open discussion about the possibility of treatment not resulting in children and encourage patients to develop 'plan(s) B', to support patients who end treatment without children, and to create the organizational structures needed to support clinics and healthcare professionals in this endeavour.


Assuntos
Clínicas de Fertilização , Técnicas de Reprodução Assistida , Humanos , Feminino , Gravidez , Infertilidade/terapia , Assistência Centrada no Paciente
2.
Epilepsy Behav ; 156: 109828, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38761447

RESUMO

Youth with epilepsy (YWE) are at elevated risk for anxiety, yet anxiety is often undetected and understudied in this population. Most research on anxiety in YWE is based on parent proxy-report and broad-band measures with limited sensitivity. The aim of the current study was to: 1) examine rates of anxiety symptoms in YWE using a diagnosis-specific, self-report measure of anxiety symptoms, 2) assess differences in anxiety symptoms by sociodemographic and medical variables, and 3) evaluate changes in anxiety symptoms following a brief behavioral health intervention delivered within an interdisciplinary epilepsy clinic visit. As part of routine clinical care, 317 YWE [Mage=13.4+2.5 years (range 7-19 years); 54% female; 84% White: Non-Hispanic] completed the Multidimensional Anxiety Scale for Children, self-report (MASC-10), with a subset completing the MASC-10 at a second timepoint (n=139). A retrospective chart review was completed and sociodemographic, medical variables and behavioral health interventions were collected. Thirty percent of YWE endorsed elevated anxiety symptoms, with higher rates in those who were younger. YWE who received a behavioral health intervention for anxiety (n=21) demonstrated greater decreases in anxiety symptoms from Time 1 to Time 2 compared to those who did not receive a behavioral intervention (n=108). The integration of psychologists into pediatric epilepsy clinics may have allowed for early identification of anxiety symptoms, as well behavioral interventions to address these symptoms, which has the potential to decrease the need for more intensive services.


Assuntos
Ansiedade , Epilepsia , Autorrelato , Humanos , Feminino , Adolescente , Masculino , Criança , Epilepsia/terapia , Epilepsia/psicologia , Epilepsia/diagnóstico , Ansiedade/terapia , Ansiedade/diagnóstico , Ansiedade/etiologia , Adulto Jovem , Escalas de Graduação Psiquiátrica , Estudos Retrospectivos , Terapia Comportamental/métodos
3.
Aust N Z J Psychiatry ; 58(3): 201-206, 2024 03.
Artigo em Inglês | MEDLINE | ID: mdl-38130026

RESUMO

The advent of dopamine (D2) receptor-blocking medications over 70 years ago, ushered in a new era of biological treatment for schizophrenia. However, we argue that little subsequent progress has been made in translating this into fulfilled and fulfilling lives for people with schizophrenia. This Viewpoint asks why this is the case, and suggests ways forward for capitalising on extant and emerging new treatments for psychotic disorders, to the betterment of the lives of people living with schizophrenia.


Assuntos
Antipsicóticos , População Australasiana , Transtornos Psicóticos , Esquizofrenia , Humanos , Antipsicóticos/uso terapêutico , Esquizofrenia/tratamento farmacológico , Austrália , Transtornos Psicóticos/tratamento farmacológico
4.
Health Promot Int ; 39(1)2024 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-38217454

RESUMO

How frontline care professionals interpret and fulfill their health promotion roles is of great importance for the health of the vulnerable clients they work with. While the literature on health promotion is limited to describing the roles of healthcare professionals, this study examines the health promotion roles held by various frontline professionals when working with clients with combined psychosocial problems and how this is associated with professional identity. Based on ethnographic data from Dutch frontline professionals in social welfare, general healthcare and mental healthcare, this article shows how various frontline professionals promote health by reframing and customizing health problems and that this is associated with how they identify as pragmatic or holistic professionals.


Assuntos
Antropologia Cultural , Promoção da Saúde , Humanos , Países Baixos , Pessoal de Saúde , Seguridade Social
5.
J Cancer Educ ; 2024 Aug 07.
Artigo em Inglês | MEDLINE | ID: mdl-39107671

RESUMO

Pediatric cancer is one of the most burdensome chronic diseases, necessitating a variety of severe medical interventions. As a result, the disease and its treatment cause numerous acute and long-term medical, psychological, and socioeconomic strains for young patients and their families. Therefore, psychosocial care using evidence-based interventions (EBIs) before, during, and after medical treatments is essential to ensure that patients receive adequate information and to minimize the adverse emotional and psychosocial impacts such as insecurity, fear, and shame. The present study reports the first promising results of applying cancer-specific psychosocial methods developed in the quality improvement project "My Logbook." The four assessed tools are specifically designed to adequately prepare pediatric cancer patients for surgery, chemotherapy, radiotherapy, and stem cell transplantation. Self and proxy ratings were used to assess the patients' subjective knowledge and emotional well-being before and after each intervention session. The results showed that patient-centered interventions using various creative and developmentally adapted methodologies (e.g., psychoeducation, crafting, games) have the potential to effectively enhance patient health literacy (V = 120.5, p < .001, r = 0.33) and well-being as manifested in more positive (slope = 0.121, p = .016) and less negative (slope = - 0.350, p < .001) or neutral emotions (slope = - 0.202, p = .002). These findings highlight the importance of developing and implementing psychosocial tools in pediatric oncology to prevent psychological overload and negative emotions and to increase subjective control beliefs, autonomy, and empowerment. Moreover, the effective application and systematic evaluation of evidence-based psychosocial tools can facilitate the establishment of standardized guidelines for psychosocial care in pediatric oncology. Thereby, the final goal is to ensure the quality of care and to use education to increase the quality of life for all pediatric cancer patients.Trial registration: ClinicalTrials.gov Identifier: NCT04474678 (July 17, 2020).

6.
Hum Reprod ; 38(7): 1332-1344, 2023 07 05.
Artigo em Inglês | MEDLINE | ID: mdl-37196325

RESUMO

STUDY QUESTION: Are patients willing to discuss the possibility of treatment being unsuccessful as part of routine care offered at clinics, and what are the factors associated with this willingness? SUMMARY ANSWER: Nine in every 10 patients are willing to discuss this possibility as part of routine care, with willingness being associated with higher perceived benefits, lower barriers, and stronger positive attitudes towards it. WHAT IS KNOWN ALREADY: Fifty-eight percent of patients who complete up to three cycles of IVF/ICSI in the UK do not achieve a live birth. Offering psychosocial care for unsuccessful fertility treatment (PCUFT), defined as assistance and guidance on the implications of treatment being unsuccessful, could reduce the psychosocial distress patients experience when it happens, and promote positive adjustment to this loss. Research shows 56% of patients are willing to plan for an unsuccessful cycle, but little is known about their willingness and preferences towards discussing the possibility of definitive unsuccessful treatment. STUDY DESIGN, SIZE, DURATION: The study was of cross-sectional design, comprising a theoretically driven and patient-centred bilingual (English, Portuguese) mixed-methods online survey. The survey was disseminated via social media (April 2021-January 2022). Eligibility criteria included being aged 18 or older, waiting to or undergoing an IVF/ICSI cycle, or having completed a cycle within the previous 6 months without achieving a pregnancy. Out of 651 people accessing the survey, 451 (69.3%) consented to participate. From these, 100 did not complete 50% of the survey questions, nine did not report on the primary outcome variable (willingness), and 342 completed the survey (completion rate 75.8%, 338 women). PARTICIPANTS/MATERIALS, SETTING, METHODS: The survey was informed by the Health Belief Model (HBM) and Theory of Planned Behaviour (TPB). Quantitative questions covered sociodemographic characteristics and treatment history. Quantitative and qualitative questions gathered data on past experiences, willingness, and preferences (with whom, what, how and when) to receive PCUFT, as well as theory-informed factors hypothesized to be associated with patients' willingness to receive it. Descriptive and inferential statistics were used on quantitative data about PCUFT experiences, willingness, and preferences, and thematic analysis was applied to textual data. Two logistic regressions were used to investigate the factors associated with patients' willingness. MAIN RESULTS AND THE ROLE OF CHANCE: Participants were, on average, 36 years old and most resided in Portugal (59.9%) and the UK (38.0%). The majority (97.1%) were in a relationship for around 10 years, and 86.3% were childless. Participants were undergoing treatment for, on average, 2 years [SD = 2.11, range: 0-12 years], with most (71.8%) having completed at least one IVF/ICSI cycle in the past, almost all (93.5%) without success. Around one-third (34.9%) reported having received PCUFT. Thematic analysis showed participants received it mainly from their consultant. The main topic discussed was patients' low prognosis, with the emphasis being put on achieving a positive outcome. Almost all participants (93.3%) would like to receive PCUFT. Reported preferences indicated that 78.6% wanted to receive it from a psychologist/psychiatrist/counsellor, mostly in case of a bad prognosis (79.4%), emotional distress (73.5%), or difficulties in accepting the possibility of treatment being unsuccessful (71.2%). The preferred time to receive PCUFT was before initiating the first cycle (73.3%), while the preferred format was in an individual (mean = 6.37, SD = 1.17; in 1-7 scale) or couple (mean = 6.34, SD = 1.24; in 1-7 scale) session. Thematic analysis showed participants would like PCUFT to provide an overview of treatment and all possible outcomes tailored to each patient's circumstances and to encompass psychosocial support, mainly focused on coping strategies to process loss and sustain hope towards the future. Willingness to receive PCUFT was associated with higher perceived benefit of building psychosocial resources and coping strategies (odds ratios (ORs) 3.40, 95% CI 1.23-9.38), lower perceived barrier of triggering negative emotions (OR 0.49, 95% CI 0.24-0.98), and stronger positive attitudes about PCUFT being beneficial and useful (OR 3.32, 95% CI 2.12-5.20). LIMITATIONS, REASONS FOR CAUTION: Self-selected sample, mainly composed of female patients who had not yet achieved their parenthood goals. The small number of participants unwilling to receive PCUFT reduced statistical power. The primary outcome variable was intentions, and research shows a moderate association between intentions and actual behaviour. WIDER IMPLICATIONS OF THE FINDINGS: Fertility clinics should provide patients with early opportunities to discuss the possibility of their treatment being unsuccessful as part of routine care. PCUFT should focus on minimizing suffering associated with grief and loss by reassuring patients they can cope with any treatment outcome, promoting coping resources, and signposting to additional support. STUDY FUNDING/COMPETING INTEREST(S): M.S.-L. holds a doctoral fellowship from the Portuguese Foundation for Science and Technology, I.P. [Fundação para a Ciência e a Tecnologia] (FCT; SFRH/BD/144429/2019). R.C. holds a post-doctoral fellowship supported by the European Social Fund (ESF) and FCT (SFRH/BPD/117597/2016). The EPIUnit, ITR and CIPsi (PSI/01662) are also financed by FCT through the Portuguese State Budget, in the scope of the projects UIDB/04750/2020, LA/P/0064/2020 and UIDB/PSI/01662/2020, respectively. Dr Gameiro reports consultancy fees from TMRW Life Sciences and Ferring Pharmaceuticals A/S, speaker fees from Access Fertility, SONA-Pharm LLC, Meridiano Congress International and Gedeon Richter, grants from Merck Serono Ltd, an affiliate of Merck KgaA, Darmstadt, Germany. TRIAL REGISTRATION NUMBER: N/A.


Assuntos
Coeficiente de Natalidade , Fertilização in vitro , Gravidez , Humanos , Feminino , Adulto , Estudos Transversais , Fertilização in vitro/métodos , Resultado do Tratamento , Nascido Vivo , Taxa de Gravidez
7.
Psychooncology ; 32(5): 760-778, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36944593

RESUMO

OBJECTIVE: To synthesize and examine current literature on survivorship experiences and psychosocial oncologic care programs of individuals affected by cancer in sub-Saharan Africa (SSA). METHODS: This was a systematic review guided by the PRISMA 2020 guidelines. We searched 6 databases for articles published from inception to 21 October 2021. Articles were appraised using the Johanna Briggs Institute's Checklist for Qualitative Research. For data synthesis, we used the World Health Organization (WHO) quality of life framework [WHOQOL] to organize experiences into 6 domains/themes. RESULTS: Twenty-five qualitative studies were included in the synthesis. Studies focused on psychosocial care of adults (>18 years) affected by cancer in SSA. The common WHOQOL domains were social relations, spirituality/religion/personal beliefs, and psychological. CONCLUSION: Findings echo need for individuals with cancer and their caregivers. Healthcare professionals are an essential resource for information and support services that can be tailored to individuals need. This synthesis highlighted caregiver stress and stressors from the community that could impact care of individuals with cancer. A holistic approach is needed that incorporates professional and social aspects of care.


Assuntos
Sobreviventes de Câncer , Neoplasias , Adulto , Humanos , Cuidadores , Qualidade de Vida , Pesquisa Qualitativa , Pessoal de Saúde , Neoplasias/terapia
8.
CA Cancer J Clin ; 66(5): 398-407, 2016 09.
Artigo em Inglês | MEDLINE | ID: mdl-27145249

RESUMO

This article highlights key findings from the "Comprehensive Cancer Care for Children and Their Families" March 2015 joint workshop by the Institute of Medicine (IOM) and the American Cancer Society. This initiative convened more than 100 family members, clinician investigators, advocates, and members of the public to discuss emerging evidence and care models and to determine the next steps for optimizing quality-of-life outcomes and well-being for children and families during pediatric cancer treatment, after treatment completion, and across the life spectrum. Participants affirmed the triple aim of pediatric oncology that strives for every child with cancer to be cured; provides high-quality palliative and psychosocial supportive, restorative, and rehabilitative care to children and families throughout the illness course and survivorship; and assures receipt of high-quality end-of-life care for patients with advancing disease. Workshop outcomes emphasized the need for new pediatric cancer drug development and identified critical opportunities to prioritize palliative care and psychosocial support as an integral part of pediatric cancer research and treatment, including the necessity for adequately resourcing these supportive services to minimize suffering and distress, effectively address quality-of-life needs for children and families at all stages of illness, and mitigate the long-term health risks associated with childhood cancer and its treatment. Next steps include dismantling existing silos and enhancing collaboration between clinical investigators, disease-directed specialists, and supportive care services; expanding the use of patient-reported and parent-reported outcomes; effectively integrating palliative and psychosocial care; and clinical communication skills development. CA Cancer J Clin 2016;66:398-407. © 2016 American Cancer Society.


Assuntos
Educação/organização & administração , Família , National Academies of Science, Engineering, and Medicine, U.S., Health and Medicine Division , Neoplasias/terapia , Cuidados Paliativos , Qualidade de Vida , Adulto , American Cancer Society/organização & administração , Criança , Humanos , Oncologia , National Academies of Science, Engineering, and Medicine, U.S., Health and Medicine Division/organização & administração , Neoplasias/reabilitação , Sistemas de Apoio Psicossocial , Estados Unidos
9.
Support Care Cancer ; 31(8): 475, 2023 Jul 19.
Artigo em Inglês | MEDLINE | ID: mdl-37466723

RESUMO

PURPOSE: There is a growing interest in mindfulness-based expressive arts interventions in oncology, to help patients process their experiences, learn how to live with cancer, and ameliorate psychological distress. Our research purpose was to explore how patients with cancer experience a mindfulness-based expressive arts group intervention, and to articulate individual and contextual factors influencing their experiences. METHODS: We conducted a constructivist grounded theory study and recruited 32 participants who experienced a 10-week mindfulness-based expressive arts group intervention at a tertiary cancer center in mid-Western Canada. We gathered socio-demographic data and descriptions of their experiences through semi-structured interviews. Participants brought art they had created to facilitate art elicitation. Socio-demographic data were analyzed with descriptive statistics and all other data with grounded theory methods. RESULTS: Our findings revealed how entering the group and meaning making processes through mindfulness enabled participants to let go of their ruminations and calm their minds so they could fully engage in arts activities. Participants found inspiration for their artistic expressions in mindfulness meditation which allowed them to express themselves in new ways. Although this work was challenging, combining mindfulness and the arts created a unique healing space in which individual work was nested within group processes. There were notable personal factors and perspectives that influenced participants' experiences, as well as factors related to the group design and facilitator. CONCLUSIONS: Our findings provide insight into how and when this intervention was meaningful for patients, and have important implications to guide ongoing intervention development, implementation, and evaluation.


Assuntos
Atenção Plena , Neoplasias , Humanos , Atenção Plena/métodos , Teoria Fundamentada , Emoções , Neoplasias/terapia , Neoplasias/psicologia , Canadá
10.
Women Health ; 63(8): 599-614, 2023 09 14.
Artigo em Inglês | MEDLINE | ID: mdl-37642347

RESUMO

Although gynecological cancers are among the most common cancers worldwide, these diagnoses are among the most traumatic experiences in women's lives. This study aimed to examine the effects of logotherapy-based, nurse-guided meaning attribution conversations (MACs) on traumatic stress symptoms, post-traumatic growth, spiritual well-being, and life meaning attribution in gynecological cancer patients. This single-blind, randomized controlled trial consisted of face-to-face interviews with 68 women with gynecological cancer who received chemotherapy at Karadeniz Technical University Health Application And Research Center Farabi Hospital in 2019. Women in the intervention group underwent seven MAC sessions, whereas women in the control group only received routine nursing care. Data were collected using the Personal Information Form (PIF), the Traumatic Stress Symptom Scale (TSSS), the Post-Traumatic Growth Inventory (PTGI), the Meaning in Life Questionnaire (MLQ), and the Spiritual Well-Being Scale (SWBS). Descriptive statistics and parametric and nonparametric tests (Mann - Whitney U-test, Friedman test, Chi-squared test, and Fisher's exact test) were used to analyze the data. The study was registered at ClinicalTrials.gov (NCT05246462). We observed statistically significant differences in the post-intervention and follow-up mean TSSS, PTGI, and MLQ scores (p = .000) between groups. However, mean total SWBS scores were not significantly different between groups (p = .145). This study demonstrated that MACs decreased the traumatic stress symptoms of women with gynecological cancer and increased their post-traumatic growth and ability to attribute meaning to life, but did not affect their spiritual well-being.


Assuntos
Ginecologia , Neoplasias , Feminino , Humanos , Projetos Piloto , Logoterapia , Método Simples-Cego , Comunicação
11.
BMC Nurs ; 22(1): 392, 2023 Oct 19.
Artigo em Inglês | MEDLINE | ID: mdl-37853417

RESUMO

BACKGROUND: Psychosocial care is an integral component of holistic nursing practices. This study aimed to examine how fourth-year nursing students at Mutah University perceive various care characteristics, specifically psychosocial care. METHODS: A quantitative cross-sectional study was conducted using the Caring Dimension Inventory (CDI). Data were obtained from 105 nursing students before graduating from a Jordanian public educational institution. Data analyzed using the scoring of CDI and descriptive statistics. RESULTS: The mean scores in the professional and technical domain of care were statistically higher for fourth-year nursing students (4.69 ± 0.25). This exceeded their scores in the psychosocial domain of care (3.37 ± 1.20). This suggests that fourth-year nursing students prioritize professional and technical care over psychosocial care. CONCLUSIONS: Fourth-year nursing students tended to perceive the technical aspects of care as more significant than the psychosocial aspects. This highlights the need for nursing schools and healthcare providers to reconsider their focus and prioritize the importance of psychosocial care.

12.
BMC Nurs ; 22(1): 304, 2023 Sep 05.
Artigo em Inglês | MEDLINE | ID: mdl-37670261

RESUMO

BACKGROUND: Meeting inpatients' psychosocial care needs is essential for their wellbeing, recovery, and positive experiences. This study aimed to describe and compare surgical inpatients' subjective perceptions of the importance of fundamental psychosocial and overall care received. METHODS: A descriptive study with a convenient sample was conducted from September 2019 to April 2020. A total of 194 surgical inpatients from Norway and Denmark answered a perioperative user participation questionnaire on the day of discharge. The questionnaire was previously face- and content validated. The questionnaire assessed patients' sociodemographic characteristics and four dimensions of fundamental care domains: Psychosocial, Relational, Physical, and System level. This study reports the results from the psychosocial domain. Descriptive statistics including frequencies, percentages, means, and standard deviations were used to analyze background information variables. The congruency between participants' expectations of and experiences with psychosocial care is presented. RESULTS: The inpatients expected (and experienced) the healthcare personnel to treat them with respect and dignity, and to be involved and informed throughout their perioperative care. The average ratings regarding these aspects of psychosocial care needs were 72.1-93.8%. There was congruency between patients' perceptions of the subjective importance (SI) of psychosocial fundamental care and their perceived reality (PR) of care. Congruency between high SI and high PR ranged from 59.1 to 92.2%, and congruency between low SI and low PR ranged from 0 to 6.6%. Incongruency between SI and PR varied between 5.9 and 39.6% and was mainly related to higher PR than SI. We found no association between education level, sex, length of stay, age, and patient expectations of or experiences with psychosocial care needs. CONCLUSIONS: Surgical inpatients in Norway and Denmark experience respectful and dignified treatment, and they feel involved and informed in their perioperative care. It is important to include patient perspectives in further research to avoid missed care and disconnection between what patients prefer and what healthcare personnel plan to do. Understanding patient preferences might also lead to less stress and workload for healthcare personnel.

13.
J Perianesth Nurs ; 2023 Dec 04.
Artigo em Inglês | MEDLINE | ID: mdl-38054913

RESUMO

PURPOSE: This study aimed to determine the subjective psychological well-being levels and sociodemographic and psychosocial factors affecting the psychological well-being of preoperative surgical patients. DESIGN: This was a cross-sectional study. METHODS: This study was conducted between January 15, 2021 and July 15, 2021. The sample consisted of 236 surgical patients in a public hospital in the Thrace region of Turkey. Data were collected using a personal information form and the five-item World Health Organization Well-Being Index (WHO-5). The data were analyzed using numbers, percentages, mean, standard deviation, independent samples t test, one-way analysis of variance, Tukey's multiple comparison test, and linear regression analysis. FINDINGS: Participants had a mean WHO-5 score of 10.76 ± 6.21, indicating low subjective psychological well-being. Economic status, chronic disease status, history of surgery, having been on psychiatric medication or receiving professional psychological support, tobacco use, experiencing a significant life change in the last 3 months, and reporting experiencing frequent stress in everyday life were significant predictors of WHO-5 scores. CONCLUSIONS: Preoperative surgical patients have low subjective psychological well-being, and their sociodemographic and psychosocial factors affect their psychological well-being.

14.
Omega (Westport) ; 86(4): 1371-1387, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-33853447

RESUMO

Little is known about support experiences and needs in the dyads of (1) terminally ill adult children and their parent caregivers and (2) terminally ill parents and their adult child caregivers. The current study aimed at investigating the experiences and needs of adult children and parents in end of life situations regarding their provision and receipt of support. The study employed a convergent parallel mixed-methods design, combining explorative qualitative interviews with the quantitative self-report Berlin Social Support Scales. Sixty-five patients (dyad 1: 19; dyad 2: 46) and 42 family caregivers (dyad 1: 13; dyad 2: 29) participated in the study (02/2018-11/2019). Results show that ill adult children felt less (well) supported than ill parents. Parent caregivers were often limited in the support they could provide, due to their age and health conditions. Hypotheses were deduced from patients' and family caregivers' notions to inform dyad-specific recommendations for support interventions.


Assuntos
Filhos Adultos , Pais , Feminino , Humanos , Adulto , Cuidadores , Apoio Social , Morte , Pesquisa Qualitativa
15.
Pediatr Blood Cancer ; 69(9): e29809, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35674474

RESUMO

To provide the standard of psychosocial care for children with cancer and hematological disorders and their families, multidisciplinary teams must clearly define their scope and collaborate in ways that optimize the quality and efficiency of care. A new organizational structure was leveraged to delineate roles and scope for each psychosocial discipline at our institution. We developed a document, the scope of psychosocial care (SPC), that serves as a platform for making patient care decisions and provides opportunities for the reevaluation of programming. Herein, we present the process and outcome of the SPC and make recommendations for identifying roles in pediatric psychosocial hematology-oncology.


Assuntos
Doenças Hematológicas , Hematologia , Neoplasias , Reabilitação Psiquiátrica , Criança , Doenças Hematológicas/terapia , Humanos , Oncologia , Neoplasias/terapia
16.
Pediatr Blood Cancer ; 69(2): e29456, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34854538

RESUMO

BACKGROUND: Psychosocial morbidity in pediatric oncology patients and their caregivers is widely recognized. Although routine systematic psychosocial screening has been proposed as a standard of care, screening is still limited. The present study assessed whether supplying the patient's treating team of healthcare providers with psychosocial risk screening information near diagnosis would increase the rate of documented psychosocial contacts, particularly for patients/families with elevated risk. The effect of demographic and clinical factors was also examined. PROCEDURES: Ninety-three families with a child/youth newly diagnosed with cancer participated. Families were randomly assigned to a care as usual control group (n = 44) or an intervention group (n = 49) where the treating team was provided with a summary of family psychosocial risk, measured by the Psychosocial Assessment Tool (PAT). The PAT was completed by the primary caregiver, who also provided demographic information. The number of psychosocial intervention contacts documented in the medical charts was examined. RESULTS: The rate of psychosocial intervention did not significantly differ between the groups (P > 0.05). The intensity of the child's cancer treatment was found to be the only significant predictor of the number of documented psychosocial intervention contacts (ß = 0.396, P < 0.001). CONCLUSIONS: Clinical factors appear to be more predictive of the rate of psychosocial intervention provided to pediatric oncology patients and their families than informing the treating team of family psychosocial risk. Additional research is required to address the gap between psychosocial risk screening, psychosocial intervention, and family outcomes.


Assuntos
Oncologia , Neoplasias , Adolescente , Cuidadores/psicologia , Criança , Pessoal de Saúde , Humanos , Programas de Rastreamento , Neoplasias/psicologia , Neoplasias/terapia
17.
Support Care Cancer ; 30(6): 5311-5318, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-35278137

RESUMO

OBJECTIVE: Rates of depression identification in oncology settings and referral to psychosocial services remain low. Patients with lung cancer face an elevated risk of depression relative to patients with other cancers. This study explored perceptions of somatic and affective symptoms and psychosocial care utilization among younger and older lung cancer survivors. METHODS: We conducted in-depth interviews with 20 adults at two academic medical centers in Boston, MA, who had received a lung cancer diagnosis in the past 24 months. A semi-structured interview guide was used to assess experiences with, and perceptions of, depression symptoms and psychosocial services. Interviews were audio-recorded, transcribed, and coded to identify themes. We also explored differences between younger (<65years; N=9) and older (>65years; N=11) patients. RESULTS: Participants commonly described somatic symptoms (i.e., changes in appetite, sleep, or energy levels) and affective symptoms (i.e., worry, fear, sadness) as side effects of cancer treatment. Older participants more commonly contextualized these symptoms with information about how they impacted daily life. Both younger and older participants faced barriers to accessing psychosocial services, with older adults more commonly referencing stigma of service referral and utilization. DISCUSSION: Patients with lung cancer associated both somatic and affective symptoms with their cancer and its treatment, with age differences in how symptoms were described and how psychosocial referrals may be perceived. More systematic integration of psychosocial care into cancer care may help to increase the identification of depression in lung cancer and reduce barriers to psychosocial service utilization.


Assuntos
Sobreviventes de Câncer , Neoplasias Pulmonares , Reabilitação Psiquiátrica , Sintomas Afetivos , Idoso , Humanos , Neoplasias Pulmonares/psicologia , Sobreviventes/psicologia
18.
Support Care Cancer ; 30(12): 10051-10065, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36227504

RESUMO

PURPOSE: A cancer diagnosis poses unique challenges for moms with young children who must balance illness-management alongside existing paid (e.g., employment) and unpaid (e.g., domestic/caregiving) work. The goal of this study was to improve understanding of the support needs of mothers living with cancer and their experiences receiving psychosocial and childcare support from a community organization, the Nanny Angel Network (NAN). METHODS: Mothers who accessed NAN services during their cancer treatment and/or recovery (N = 20) participated in qualitative semi-structured interviews. Thematic analysis was used to inductively and deductively identify emerging patterns in the data and theoretical abduction was applied to further interpret participants' accounts using a feminist political economy framework. RESULTS: Participants expressed how balancing the demands of patienthood and parenthood was challenging and how cancer treatment created new needs for support with care work. Mothers explained that NAN offered indispensable family-centered support largely missing from the health care system, promoting improved physical, psychosocial, and relational health for them and their families. While accessible from a cost-perspective, participants identified different pathways, including awareness, cross-system collaboration, and stable funding, that limited timely access to NAN. CONCLUSION: Access to family-centered care, such as that offered through NAN, was vital to the health and healing of the study participants and their families. Improved collaboration with and investment in community organizations like NAN that have a strong infrastructure to support moms living with cancer offers a practical, feasible, and immediate solution to help address some of the distinct challenges this population faces.


Assuntos
Mães , Neoplasias , Criança , Feminino , Humanos , Pré-Escolar , Mães/psicologia , Cuidado da Criança , Pesquisa Qualitativa , Emprego , Neoplasias/terapia
19.
Eur J Pediatr ; 181(9): 3545-3548, 2022 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-35804198

RESUMO

The neonatal intensive care unit (NICU) is a high-acuity, stressful unit for both parents and staff. Up to 50% of mothers and partners experience emotional distress (i.e., depression, anxiety, or posttraumatic stress) during NICU hospitalization and 30-60% continue to experience distress after discharge. Similarly, up to 50% of NICU staff report burnout and emotional distress. Although healthcare providers have developed interdisciplinary guidelines to enhance psychosocial resources for parents and staff, standardized psychosocial services are lacking. The purpose of this short communication is to describe: (1) the need for psychosocial interventions for NICU parents and staff; (2) existent psychosocial programs and their gaps and limitations; and (3) future directions for psychosocial care in NICU settings. We reviewed the current literature and propose a new conceptual model to inform psychosocial interventions for the NICU. We argue that brief, evidence-based, resiliency, and relationship-based programs are needed to enhance parent and staff outcomes and, ultimately, child development and the NICU unit culture. CONCLUSION: Given the lack of standardized psychosocial care, new interventions for NICU families and staff are needed more than ever. Resiliency, relationship-based interventions that leverage multidisciplinary support may be an innovative way to enhance NICU outcomes and care. WHAT IS KNOWN: • 40-50% of parents in the NICU report elevated emotional distress and 30-50% of staff report burnout. • Psychosocial interventions for parents and staff are needed, yet lacking. WHAT IS NEW: • Interventions that focus on resiliency and relationships may improve the culture of the NICU. • New multidisciplinary collaborations and approaches are needed to improve implementation.


Assuntos
Unidades de Terapia Intensiva Neonatal , Pais , Emoções , Feminino , Pessoal de Saúde , Humanos , Recém-Nascido , Mães , Pais/psicologia
20.
Health Expect ; 25(6): 2902-2913, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36128606

RESUMO

INTRODUCTION: Many people undergo fertility treatment to have biological children, but around four in ten patients complete all treatment cycles without having the children they desire. This triggers intense grief from which patients report taking on average 2 years to recover. Fertility guidelines and regulators stress the need to support patients through this process, but there is a scarcity of evaluated interventions to this end and evidence about when and how to offer care is lacking. This study explored patients' and healthcare professionals' (HCPs) experiences of and views about provision of psychosocial care (to patients facing unsuccessful fertility treatment, i.e., care provided by a mental health professional to address the emotional, cognitive, behavioural, relational and social needs that patients have at this stage of treatment). METHODS: Five qualitative online focus groups were conducted with Portuguese participants: three with patients waiting to initiate or undergoing their last cycle of in vitro fertilization/intracytoplasmic sperm injection or having completed it within the last 2 months without achieving a pregnancy and two with HCPs working at fertility clinics. Focus groups were recorded and transcribed verbatim, and data were analysed with Framework Analysis. RESULTS: Thirteen patients and nine HCPs participated. Analysis resulted in 1293 codes, systematically organized into 13 categories, 4 themes and 1 metatheme. The latter showed high consensus about the need for psychosocial care for unsuccessful treatment, but perceived challenges in its implementation. Themes reflected (1) consensual demand for psychosocial care at all stages of treatment but particularly at the end, (2) high perceived acceptability of integrating preventive care initiated during treatment with early psychosocial care only for those patients who experience unsuccessful treatment, (3) perceived challenges of implementing psychosocial care for unsuccessful treatment at clinics and (4) suggestions to promote its acceptability and feasibility. CONCLUSION: Patients and HCPs perceive that clinics should improve care provision across the whole treatment pathway and in particular for unsuccessful fertility treatment. Suggestions were made to inform future research focusing on the development and evaluation of psychosocial interventions to this end. PATIENT OR PUBLIC CONTRIBUTION: Patients and HCPs participated in the focus groups. Two HCPs also revised the manuscript.


Assuntos
Reabilitação Psiquiátrica , Criança , Humanos , Masculino , Estudos de Viabilidade , Sêmen , Pessoal de Saúde/psicologia , Grupos Focais , Pesquisa Qualitativa
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