Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 117
Filtrar
1.
Best Pract Res Clin Endocrinol Metab ; 38(5): 101932, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-39244492

RESUMEN

Detransition, the process of reverting to one's gender assigned at birth after a period of transition, or moving away from the original transition goal, presents unique challenges in healthcare. This paper introduces the clinical issue and provides a comprehensive overview of the ethical, psychological, legal, surgical, and endocrinological considerations involved in supporting individuals who choose to detransition. It emphasises the importance of patient-centred care, informed consent, and the need for expanded research to address the specific needs of this population. The paper highlights the complexities of endocrine management, surgical reversals, and the necessity for comprehensive support systems. Key psychotherapeutic interventions, including trauma-focused Cognitive Behavioural Therapy (CBT), Eye Movement Desensitization and Reprocessing (EMDR), and third-wave approaches like Compassion-Focused Therapy (CFT), are recommended to manage associated trauma and shame. By adopting a holistic approach, healthcare providers can better assist individuals navigating the complexities of detransition.


Asunto(s)
Atención Dirigida al Paciente , Humanos , Femenino , Masculino , Terapia Cognitivo-Conductual
2.
Semin Oncol Nurs ; 40(4): 151678, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38897857

RESUMEN

OBJECTIVES: This study aimed to assess the reliability and validity of the Psychosocial Needs Inventory (PNI) among Turkish oncology patients. METHODS: A methodological study was conducted with 1,547 oncology patients. This validation study was divided into two phases. Phase 1 included translation of the PNI according to World Health Organization recommendations, investigation of content validity by experts, and a pilot study involving 136 participants. Phase 2 included a validity and reliability analysis of the PNI. Data analysis comprised exploratory (EFA) and confirmatory factor analyses (CFA), Cronbach's alpha, test-retest reliability, Hotelling's T2 test and item-total score correlation, and the Content Validity Index (CVI). RESULTS: For the phase 1, the CVI for items and scale were >.75 and .883, respectively. Cronbach's alpha values of the subdimensions ranged between 0.84 and 0.94. The test-retest analyses of the subdimensions showed correlation coefficients based on the pilot test (p < .001). For the phase 2, based on the fit indices in confirmatory factor analysis, the structures of the dimensions "Importance" and "Satisfaction" were acceptable. Cronbach's alpha values of the subdimensions ranged between 0.84 to 0.94 in the "Importance" dimension and 0.86 to 0.94 in the "Satisfaction" dimension. As a result of EFA, the Kaiser-Meyer-Olkin, Bartlett's test (p < 0.001) and PNI Importance explained at 68.46% and PNI Satisfaction at 70.15% of the total variance by the six-factor structure. CFA showed that the indices and validity, including content validity, convergent validity were satisfactory. CONCLUSION: The PNI, which was found to be a valid and reliable measurement tool, can be used to determine the psychosocial needs of cancer patients. IMPLICATIONS FOR NURSING PRACTICE: Health professionals need to use the PNI to measure their importance to cancer patients' psychosocial needs and assess their satisfaction with meeting them to improve holistic care and support.


Asunto(s)
Neoplasias , Psicometría , Humanos , Turquía , Femenino , Masculino , Neoplasias/psicología , Persona de Mediana Edad , Reproducibilidad de los Resultados , Adulto , Encuestas y Cuestionarios/normas , Anciano , Proyectos Piloto
3.
Ann Med Surg (Lond) ; 86(6): 3357-3366, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38846850

RESUMEN

Background: A mental disorder is characterized by a clinically significant impairment of cognition, emotion regulation, or behavior. As a result of the shift in care from medical centers and hospitals to home care, we now see a change in the treatment of patients with chronic mental disorders. Consequently, families have become the main support system in the progressive care of these patients, leading to psychological and social problems. The current qualitative study investigated the social and psychological health needs and problems of family caregivers of patients with chronic mental disorders in Iran's cultural and social context. Methods: This was a content analysis qualitative study. The study was conducted in three psychiatric hospitals in Farabi, Noor, Modares. Purposive sampling was done and continued until data saturation. Semi-structured, face-to-face, and individual interviews were conducted with 49 participants (15 family caregivers of patients with CMD and 34 members of the mental health care team). Data analysis was done using the conventional content analysis method. Results: Eight hundred seventy-five primary codes were obtained, which were classified into 10 subcategories and 3 main categories of 'health challenges of caregiver', 'confused concept of care' and "the need for a coherent support system. Conclusion: In Iranian society, after the patient is discharged from the hospital or care center, family members will change their role to the most important caregivers of these patients. The psychological and social health of these caregivers is destroyed because of the problems they have in providing care for their patients and their needs, which are not met.

4.
Curr Oncol ; 31(5): 2620-2635, 2024 05 05.
Artículo en Inglés | MEDLINE | ID: mdl-38785478

RESUMEN

Chinese patients face higher risks of gastrointestinal (GI) cancers and greater cancer-related deaths than Canadian-born patients. The older population encounters barriers to quality healthcare, impacting their well-being and survival. Previous studies highlighted Chinese immigrant perceptions of not requiring healthcare support. During the COVID-19 pandemic, their underutilization of healthcare services garnered attention. The present study explores the experiences of older Chinese cancer patients to improve culturally sensitive cancer care. A total of twenty interviews carried out in Cantonese and Mandarin were conducted with Chinese immigrants, aged 60 or above, diagnosed with Stage 3 or 4 GI cancer. These interviews were transcribed verbatim, translated, and subjected to qualitative descriptive analysis. Among older Chinese immigrant patients, a phenomenon termed "Premature Acceptance: Normalizing Death and Dying" was observed. This involved four key themes: 1. acceptance and letting go, 2. family first, 3. self-sufficiency, and 4. barriers to supportive care. Participants displayed an early acceptance of their own mortality, prioritizing family prosperity over their own quality of life. Older Chinese patients normalize the reality of facing death amidst cancer. They adopt a pragmatic outlook, acknowledging life-saving treatments while willingly sacrificing their own support needs to ease family burdens. Efforts to enhance health literacy require culturally sensitive programs tailored to address language barriers and differing values among this population. A strengths-based approach emphasizing family support and practical aspects of care may help build resilience and improve symptom management, thereby enhancing their engagement with healthcare services.


Asunto(s)
COVID-19 , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Pueblo Asiatico/psicología , Actitud Frente a la Muerte , Canadá , China/etnología , COVID-19/psicología , Pueblos del Este de Asia , Emigrantes e Inmigrantes/psicología , Neoplasias Gastrointestinales/psicología , Neoplasias/psicología , Neoplasias/mortalidad , Investigación Cualitativa , SARS-CoV-2
5.
Support Care Cancer ; 32(6): 337, 2024 May 10.
Artículo en Inglés | MEDLINE | ID: mdl-38727728

RESUMEN

PURPOSE: The challenges of fertility loss owing to cancer treatment persist long after treatment. However, psychosocial care for fertility among cancer survivors who have completed cancer treatment is insufficient. This systematic review examined psychosocial experiences related to the potential loss of fertility and unsuccessful pregnancy after treatment in cancer survivors of reproductive age to identify psychosocial care needs. METHODS: A systematic review was conducted using the online databases PubMed, Cochrane Library, PsycINFO, CINAHL, and Ichushi-Web between August and December 2022 to identify studies that addressed psychosocial experiences after fertility loss or failure to conceive among young cancer survivors. Study quality was assessed using the Mixed Methods Appraisal Tool. RESULTS: Forty studies were included, revealing psychosocial experiences across five categories: subjective fear of (potential) fertility loss, impact on romantic relationships, alternative methods for family building, reliance on social support, and specialized care. Only one study addressed the psychosocial aspects after complete loss of fertility in young cancer survivors. CONCLUSIONS: The possibility and uncertainty of fertility loss led to stress and depression, loss of identity, decreased opportunities to meet a new partner, and damaged relationships established before diagnosis. The needs encompass fertility preservation, sexuality, approaches to building a family, partner communication, and other diverse needs.


Asunto(s)
Supervivientes de Cáncer , Humanos , Supervivientes de Cáncer/psicología , Femenino , Embarazo , Apoyo Social , Neoplasias/psicología , Neoplasias/complicaciones , Neoplasias/terapia , Preservación de la Fertilidad/métodos , Preservación de la Fertilidad/psicología
6.
Eur Arch Otorhinolaryngol ; 281(9): 4913-4920, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-38704510

RESUMEN

INTRODUCTION: Cancer is among the most frequent pathologies and a major cause of death and disability. Scientific research and surgeons focus mainly on aspects relating to etiopathogenesis, diagnosis, and treatment, but often neglect the psychological needs of patients and related social factors. The aim of this study is to investigate the psychological and social needs of patients affected by head and neck cancer to improve patient management and achieve more empathetic care. MATERIALS AND METHODS: The Need Evaluation Questionnaire (NEQ) was administered to adult patients who had to undergo surgery in 4 Italian tertiary head and neck cancer centers the day before the operation. RESULTS: 188 patients affected by stage I-IV head and neck tumors were enrolled. The main needs expressed by patients fall under the categories of either "information and dialogue", (64.3% more information about future conditions, 50% more information about treatments, 45% more information about the diagnosis, 44% more reassurance) or "spiritual support" (50% need to talk to someone who had the same experience as them). CONCLUSIONS: Common methods of explaining diagnosis, treatment, and prognosis have proven unsatisfactory to patients and most also require more psychosocial support. This highlights the need to implement interventions and activities that are increasingly geared toward supporting the psychological and relational aspects of the care journey.


Asunto(s)
Neoplasias de Cabeza y Cuello , Evaluación de Necesidades , Humanos , Masculino , Femenino , Persona de Mediana Edad , Anciano , Neoplasias de Cabeza y Cuello/psicología , Neoplasias de Cabeza y Cuello/terapia , Encuestas y Cuestionarios , Adulto , Italia , Apoyo Social , Anciano de 80 o más Años , Educación del Paciente como Asunto
7.
Acad Pediatr ; 24(7): 1133-1140, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38609015

RESUMEN

OBJECTIVE: Provide an in-depth and psychometrically rigorous profile of the emotional well-being and sleep-related health of family caregivers of children with medical complexity (CMC). METHODS: Cross-sectional survey study of family caregivers of CMC receiving care from a pediatric complex care center between May 2021 and March 2022. Patient Reported Outcomes Measurement Information System Short-Forms (PROMIS-SF) assessed global mental health, emotional distress (anxiety, depression, anger), psychological strengths (self-efficacy, emotional regulation, meaning and purpose), and sleep-related health (fatigue, sleep-related impairment). Student's t-tests compared the sample's mean T-scores to US population norms. Pearson's correlation coefficient (ρ) examined associations between measures of psychological strengths and emotional distress. Unadjusted linear regression analyses explored relationships between well-being outcomes and child and caregiver characteristics. RESULTS: Compared to US population norms, caregivers of CMC (n = 143) reported significantly lower global mental health and emotional regulation ability as well as elevated symptoms of anxiety, depression, anger, fatigue, and sleep-related impairment (all P < .01). Whereas participants reported a significantly higher sense of meaning and purpose (P < .05), levels of self-efficacy were not significantly different from population norms. We observed moderate-to-strong inverse relationships between psychological strengths and emotional distress (ρ range, -0.39 to -0.69); with the strongest inverse associations found between emotional regulation ability and emotional distress. In exploratory analyses, caregiver race and ethnicity, socioeconomic status, and child health insurance type were significantly associated with caregiver well-being. CONCLUSION: Family caregivers of CMC report poor well-being, most notably, increased symptoms of anxiety and reduced global mental health and sleep-related health.


Asunto(s)
Ansiedad , Cuidadores , Depresión , Salud Mental , Autoinforme , Humanos , Masculino , Cuidadores/psicología , Femenino , Estudios Transversales , Niño , Adulto , Ansiedad/psicología , Adolescente , Depresión/psicología , Persona de Mediana Edad , Fatiga/psicología , Autoeficacia , Trastornos del Sueño-Vigilia/psicología , Preescolar , Ira , Adulto Joven , Distrés Psicológico , Enfermedad Crónica
8.
Front Psychiatry ; 15: 1305691, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38510801

RESUMEN

Introduction: After an acute infection with the corona virus 10-20% of those affected suffer from ongoing or new symptoms. A causal therapy for the phenomenon known as Long/Post-COVID is still lacking and specific therapies addressing psychosocial needs of these patients are imperatively needed. The aim of the PsyLoCo-study is developing and piloting a psychotherapeutic manual, which addresses Long/Post-COVID-related psychosocial needs and supports in coping with persistent bodily symptoms as well as depressive or anxiety symptoms. Methods and analysis: This pilot trial implements a multi-centre, 2-arm (N=120; allocation ratio: 1:1), parallel group, randomised controlled design. The pilot trial is designed to test the feasibility and estimate the effect of 1) a 12-session psychotherapeutic intervention compared to 2) a wait-list control condition on psychosocial needs as well as bodily and affective symptoms in patients suffering from Long/Post-COVID. The intervention uses an integrative, manualized, psychotherapeutic approach. The primary study outcome is health-related quality of life. Outcome variables will be assessed at three timepoints, pre-intervention (t1), post-intervention (t2) and three months after completed intervention (t3). To determine the primary outcome, changes from t1 to t2 are examined. The analysis will be used for the planning of the RCT to test the efficacy of the developed intervention. Discussion: The pilot study will evaluate a 12-session treatment manual for Long/Post-COVID sufferers and the therapy components it contains. The analysis will provide insights into the extent to which psychotherapeutic treatment approaches improve the symptoms of Long/Post-COVID sufferers. The treatment manual is designed to be carried out by psychotherapists as well as people with basic training in psychotherapeutic techniques. This approach was chosen to enable a larger number of practitioners to provide therapeutic support for Long/Post-COVID patients. After completion of the pilot study, it is planned to follow up with a randomized controlled study and to develop a treatment guideline for general practitioners and interested specialists. Trial registration: The pilot trial has been registered with the German Clinical Trials Register (Deutsches Register Klinischer Studien; Trial-ID: DRKS00030866; URL: https://drks.de/search/de/trial/DRKS00030866) on March 7, 2023.

9.
Disabil Rehabil ; 46(6): 1034-1044, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-36861777

RESUMEN

PURPOSE: To identify the experiences and needs of dependent children who have a parent with an acquired brain injury (ABI) using a systematic review and thematic synthesis. MATERIALS AND METHODS: A systematic search of Medline, Embase, PsycINFO, CINAHL Plus, and Web of Science was conducted. The search included variants of: "children," "parents," "acquired brain injury," and "experiences" or "needs." Eligible articles reported on the experiences/needs of dependent children who have a parent with an ABI, from the child's perspective. Thematic analysis was used to identify themes. RESULTS: A total of 4895 unique titles were assessed, and 9 studies met inclusion. Four themes were identified: (1) Sustained Emotional Toll (subthemes: (i) Initial Shock and Distress; (ii) Ongoing Loss and Grief; (iii) Present-Day Stress and Emotions), (2) Responsibilities Change and Children Help Out, (3) Using Coping Strategies (subtheme: Talking Can Help), and (4) Wanting Information about the Injury. CONCLUSION: Themes highlighted significant disruption and challenges to children's wellbeing across development, with ongoing and considerable impacts many years after the parent's injury. The nature of the experiences shifted with time since the parent's injury. These children need ongoing support starting shortly after their parent's injury that is grounded in their particular experiences.IMPLICATIONS FOR REHABILITATIONWhen a parent has an acquired brain injury (ABI), dependent children and adolescents face emotional upheaval, significant stressors, increased responsibilities, and lack of information about their parent's injury that persist even many years after injury.The nature of these experiences and therefore their needs change based on the acute versus later stages of the parent's injury.Children often do not ask questions or tell others how they feel, which means that they need support that asks about, and listens and responds to their needs.Support for children needs to start soon after the parent's injury, be grounded in the lived experiences of this group, consider their parent's recovery stage, and be embedded as part of service provision rather than rely on children or families to make service contact.


Asunto(s)
Lesiones Encefálicas , Padres , Niño , Humanos , Adolescente , Padres/psicología , Emociones , Pesar , Habilidades de Afrontamiento
10.
Front Oncol ; 13: 1246844, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37954077

RESUMEN

Radiotherapy is an important modality for cancer treatment. About 50% of cancer patients receive radiotherapy, and one-third of radiotherapy recipients were identified as having unmet psychosocial needs. The unmet psychosocial needs worsen the patient's quality of life and treatment effectiveness. This review aims to identify the psychosocial needs of post-radiotherapy cancer survivors and their direct caregivers. Systematic research of Embase, Scopus and PubMed was done and 17 studies were selected for analysis. The results show that patients encounter distress and fear due to treatment immobilization and unfamiliarity with procedures respectively. Information provision is a common need raised by patients and caregivers. Patients and caregivers report relationship problems due to affected sexual functions. To facilitate future studies, solutions to each identified psychosocial need are proposed in the discussion based on the 17 selected papers and other supporting literature. This review proposes art therapy to alleviate psychological distress, and pre-treatment information sessions to reinforce information delivery. Creative interventions such as a sexual rehabilitation program are recommended. Future studies are warranted to examine the interventions and thus improve the patients' and caregivers' well-being.

11.
Scand J Trauma Resusc Emerg Med ; 31(1): 77, 2023 Nov 10.
Artículo en Inglés | MEDLINE | ID: mdl-37946286

RESUMEN

BACKGROUND: Caring for people who are ill or injured in pre-hospital environments is emotionally draining and physically demanding. This article focuses on the Psychosocial and Mental Health Programme commissioned by the Faculty of Pre-Hospital Care (FPHC) at the Royal College of Surgeons of Edinburgh (RCSEd) in 2018 to investigate the experiences and needs of responders to pre-hospital emergencies and make recommendations. It summarises the report to FPHC published in 2022, and adds material from research published subsequently. METHOD: FPHC appointed a team to undertake the work. Team members conducted a literature review, and a systematic review of the literature concerning the impacts on the mental health of pre-hospital practitioners. They conducted fieldwork, participated in training and had conversations with trainees and established practitioners, and took evidence from the Pre-hospital Emergency Medicine Trainees Association (PHEMTA). RESULTS: The Results summarise the evidence-based theoretical background derived from the programme and practical guidance for practitioners, professional organisations, and employers who deliver pre-hospital care on the implications of, preventing and intervening with pre-hospital providers who experience psychosocial and mental health problems. CONCLUSION: This paper summarises the outputs from a multidisciplinary programme of scholarship, research, and fieldwork. The authors condense the findings and the guidance developed by the Programme Team to provide a summary of the report and guidance on implementation. They believe that the recommendations are applicable to all healthcare organisations and particularly those that employ responders to emergencies and provide pre-hospital care.


Asunto(s)
Urgencias Médicas , Rehabilitación Psiquiátrica , Humanos , Atención a la Salud , Hospitales , Salud Mental
12.
BMC Pregnancy Childbirth ; 23(1): 736, 2023 Oct 17.
Artículo en Inglés | MEDLINE | ID: mdl-37848824

RESUMEN

BACKGROUND: If the purpose of maternal education is for women to take control of their own health and that of their family in the process, it is essential to have a simple instrument that allows them to self-assess, globally, how prepared they are to face future childbirth and maternity. As there is nothing similar in our area, the objective of this study was to design a complete, specific measurement questionnaire, with good metric quality and in digital format, for the assessment of perinatal psychosocial needs. METHODS: A cross-sectional study was carried out, to evaluate the psychometric properties of a digital measurement questionnaire. The questionnaire was developed in 4 steps following the recommendations of the International Test Commission. The participants were 263 pregnant women who were recruited in primary health care appointments in the Basque Healthcare Service (Osakidetza); they completed the newly created questionnaire and all the test selected as gold standard. Their mean age was 33.55 (SD = 4.73). The analysis of the psychometric characteristics was based on mixed expert judgment procedures (focus group of healthcare professionals, item assessment questionnaire and interviews with users) and quantitative procedures (EFA, CFA, association with the gold standard and classification agreement index, ordinal alpha and McDonald's omega). RESULTS: The final version of the questionnaire was made up of 55 items that evaluate 8 aspects related to perinatal psychosocial well-being (anxious-depressive symptoms, pregnancy acceptance, partner support, coping, internal locus of control, childbirth self-efficacy, perception of childbirth as a medicalized event, and fear of childbirth). Various tests were made of the validity and reliability of the scores, providing metric guarantees for their use in our context. CONCLUSIONS: The use of this complete, quick-to-use tool with good psychometric properties will allow pregnant women to take stock of their situation, assess whether they have the necessary resources in the psychological and social sphere, and work together with midwives and other health professionals in the areas that are lacking.


Asunto(s)
Parto , Femenino , Embarazo , Humanos , Adulto , Psicometría/métodos , Reproducibilidad de los Resultados , Estudios Transversales , Parto/psicología , Encuestas y Cuestionarios
13.
Semin Oncol Nurs ; 39(5): 151475, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37633761

RESUMEN

PURPOSE: Cancer has a major impact on the individual patient and their family, especially children. However, little is known about the needs of adolescents (10-19 years) whose parent is diagnosed with cancer, especially breast cancer. Insights into psychosocial needs are important to develop appropriate guidance and support for these adolescents. The aim of this study is to explore the psychosocial needs of adolescents whose parent is diagnosed with breast cancer to improve the support for these adolescents. DATA SOURCES: This is an exploratory, qualitative study. In-depth interviews were conducted, and an interview guide was designed with the following topics: experiences, needs, and support. Participants were selected purposively and approached via the parent(s) after consultation. Interviews were audiotaped, transcribed, and thematically analyzed by using the software program NVivo. CONCLUSION: Fourteen adolescents (12-19 years) were interviewed, which resulted in five themes: distraction, support, being able to talk about it, information, and continuing a normal life. Adolescents whose parent is diagnosed with breast cancer need the best possible preservation of their normal lives. It is important for them to be able to share their story and find support from someone close to them. IMPLICATION FOR NURSING PRACTICE: The route to the adolescent is always through the parent. Healthcare professionals can discuss the well-being of the adolescent during regular consultation with the parent. If there are concerns, healthcare professionals can advise the parent about the possible needs of the adolescent and could coach the parent in supporting the adolescent to discuss their needs.


Asunto(s)
Neoplasias de la Mama , Niño , Humanos , Adolescente , Femenino , Neoplasias de la Mama/diagnóstico , Apoyo Social , Padres/psicología , Investigación Cualitativa
14.
Clin Obes ; 13(5): e12610, 2023 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-37431181

RESUMEN

Bariatric surgery is the most medically and cost-effective treatment for adults with obesity and type 2 diabetes mellitus (T2DM). Our findings suggest initial improvements in health-related quality of life that may decline as support from follow-up care ends. How patients experience long-term support is not well described. This study therefore aimed to investigate how adults with previous T2DM perceived different sources of support 2 years after bariatric surgery. In this qualitative study, individual interviews were conducted with 13 adults (10 women) 2 years after surgery. Using thematic analysis, one overarching theme (compiling complementary elements of support after gastric-bypass surgery), four themes and nine subthemes emerged. The results show that support was given and received from various sources, support needs varied over time depending on where the patient was in the process and that the sources of support were complementary. To conclude, our results show that support needs change in adults who have undergone bariatric surgery. Long-term professional and day-to-day support from family and other networks are essential and complementary elements of support. Healthcare staff should consider these findings, especially during the early follow-up period.


Asunto(s)
Cirugía Bariátrica , Diabetes Mellitus Tipo 2 , Derivación Gástrica , Obesidad Mórbida , Humanos , Adulto , Femenino , Diabetes Mellitus Tipo 2/cirugía , Calidad de Vida , Cirugía Bariátrica/métodos , Obesidad/cirugía , Resultado del Tratamiento , Obesidad Mórbida/cirugía
15.
Omega (Westport) ; : 302228231186358, 2023 Jul 05.
Artículo en Inglés | MEDLINE | ID: mdl-37408104

RESUMEN

Understanding the perceptions and experiences related to the end of life (EoL) of boys and men with Duchenne muscular dystrophy from their own and/or family perspective is limited based on the available qualitative empirical studies. This systematic review was done with a thematic synthesis of qualitative evidence according to the PRISMA Statement Guidelines and the SPIDER search tool. The review included empirical, qualitative, and relevant full-text studies published in 2000-2023 in the EBSCO Discovery Service, ISI Web of Science, Scopus, PubMed, and ProQuest databases. From o total of eight included qualitative studies, four main key themes were identified: "Being a parent/caregiver" - psychosocial aspects, needs, and experiences; "Communication about EoL with healthcare and other professionals" - positive experiences and personal shortcomings; "Discussions about…" - the issue of EoL, dying and death; and "End of life" - end-of-life care, planning and the need for palliative care.

16.
Front Psychiatry ; 14: 1074805, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37484664

RESUMEN

Background and aims: Suicide risk assessment protocols have traditionally been developed by clinical or research experts in suicidology, with little formal involvement of those with a lived experience of suicide. This study broadly aimed to seek lived experience perspectives of the Systematic Tailored Assessment for Responding to Suicidality (STARS) protocol A further aim was to elicit lived experience suggestions for wording and language used in the existing items within sections of the STARS protocol (STARS-p). Method: Participants were 33 adults (Female = 64%) with a lived experience of suicide, who attended a virtual research workshop at the National Lived Experience of Suicide Summit (2021). After being educated about STARS-p, participants provided their overall perceptions of STARS-p as well as suggestions for rewording and language use across the sections of STARS-p. Their responses were gathered using a virtual online platform for live electronic data collection. A three-phase process of qualitative content analysis was used, engaging both inductive and deductive approaches to explore study aims one and two, respectively. The Consolidated Criteria for Reporting Qualitative Research was followed to enhance quality of reporting. Results: Qualitative content analysis of participants' views of the STARS-p reflected three main categories, namely, STARS philosophy; What STARS aspires to; and Continuity of care and meeting needs. Responses characterized participants' perceptions of the core purpose of STARS-p and ways for refining or adapting it to suit diverse needs and settings. Based on deductive content analysis, suggested modifications to wording of items and additional items to extend sections were identified. Conclusion: The study yielded novel perspectives from those with a lived experience of suicide, which will inform improvements to the next edition of STARS-p. The STARS training (required for licensed use of the protocol) will be updated accordingly, in line with these results.

17.
Nurs Open ; 10(10): 7025-7037, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37515393

RESUMEN

AIM: To reach a consensus on question items for early identification of unmet psychosocial needs of school-aged siblings of children with cancer and blood disease. DESIGN: Modified Delphi method. METHODS: Twenty-three studies were reviewed to extract question items, which were classified into seven categories. A total of 39 question items were selected for this study. The selected question items were carefully considered using the modified Delphi method. The participants were 28 medical staff from a childhood cancer hub hospital and 20 sibling support group staff members. The first round consisted of a questionnaire (n = 48); the second, a focus group interview (n = 8) and the third, another questionnaire (n = 8). The first and third rounds used a 5-point Likert scale. This survey was conducted from July to October 2021. RESULTS: A total of 38, 26, and 24 question items were included in the first, second, and third rounds respectively. A total of 24 question items were extracted using the modified Delphi method to identify siblings' unmet psychosocial needs: relationship with family members, 3; daily life issues, 4; stress, 6; emotions, 3; information, 3; relationships with medical staff, 1 and social and medical resources, 4. Seven categories and 24 question items were confirmed as items for identifying the unmet psychosocial needs of school-aged siblings of children with cancer and blood disease.


Asunto(s)
Enfermedades Hematológicas , Neoplasias , Humanos , Niño , Hermanos/psicología , Consenso , Técnica Delphi , Neoplasias/diagnóstico
18.
Korean J Fam Med ; 44(3): 168-176, 2023 May.
Artículo en Inglés | MEDLINE | ID: mdl-37225442

RESUMEN

BACKGROUND: This study explored the psychosocial needs of family caregivers of persons with spinal cord injuries from the perspective of rehabilitation professionals. METHODS: An exploratory qualitative approach was used, and a total of 14 rehabilitation professionals from various backgrounds participated in face-to-face interviews. All interviews were audio recorded, and session notes were added to the existing data and later transcribed. Thematic analysis was used to identify key themes. RESULTS: Nine need themes emerged: informational, psychological, personal care, financial, social support, welfare, vocational, telemedicine, and referral. CONCLUSION: The findings of this study will aid the design or development of need-based customized psychosocial interventions for family caregivers of persons with spinal cord injuries in India. Multiple stakeholders involved in spinal cord injury management should understand the importance of meeting the needs of family caregivers of persons with spinal cord injuries and the timely delivery of customized psychosocial interventions.

19.
Patient Prefer Adherence ; 17: 1117-1130, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37102126

RESUMEN

Background: Psychosocial, lifestyle and practical needs are not routinely attended to during outpatient hepatology management, and little is known about the type and effectiveness of support services accessed by patients with cirrhosis. We quantified the type and use of community and allied health services in patients with cirrhosis. Methods: The study included 562 Australian adults with a diagnosis of cirrhosis. Health service use was assessed via questionnaire and via linkage to the Australian Medicare Benefits Schedule. Patient needs were assessed using the Supportive Needs Assessment tool for Cirrhosis (SNAC). Results: Although most patients (85.9%) used at least one community/allied health service for support with their liver disease, many reported requiring additional help with psychosocial (67.4%), lifestyle (34.3%) or practical needs (21.9%) that were not met by available services, or patients did not access services. A multidisciplinary care plan or case conference (in the 12 months prior to recruitment) was accessed by 48% of patients, 56.2% reported the use of a general practitioner for support with cirrhosis, and a dietician was the allied health clinician most accessed by patients (45.9%). Despite the high prevalence of psychosocial needs, there was relatively limited use of mental health and social work services (14.1% of patients reported the use of a psychologist), confirmed by a low prevalence of use of mental health services (17.7%) in the linked data. Conclusion: Patients with cirrhosis who have unmet complex physical and psychosocial needs require better strategies to increase their engagement with allied health and community services.

20.
Otolaryngol Clin North Am ; 56(2): 403-412, 2023 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-37030951

RESUMEN

Patients with laryngeal cancer undergo life-changing interventions that impact their individual and social well-being. There remains to be an in-depth characterization of the multidimensional symptom burden faced by patients with laryngeal cancer at the end of life. Care at end of life must attend to symptoms that manifest earlier in the course of illness. This article characterizes the suffering experienced by patients with laryngeal cancer, including societal shame, poor mental health, and inequitable outcomes. For patients with advanced laryngeal cancer, surgical palliative care provides a necessary and helpful paradigm for caregiver support, goals-of-care conversations, and treatment counseling.


Asunto(s)
Neoplasias Laríngeas , Neoplasias , Humanos , Neoplasias Laríngeas/cirugía , Cuidados Paliativos/métodos , Neoplasias/psicología , Neoplasias/terapia , Muerte , Salud Mental , Consejo , Calidad de Vida/psicología
SELECCIÓN DE REFERENCIAS
DETALLE DE LA BÚSQUEDA