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2.
J Sch Psychol ; 106: 101345, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39251319

RESUMO

Violent extremism in the United States has surged over the past 25 years, with attacks on and threats to major governmental and other institutions, infrastructure (e.g., electric grid), and specific segments of the population, including immigrant and BIPOC (Black, Indigenous, and other People of Color) communities. Violent extremism can take multiple and diverse forms, such as bombings in public spaces or specific sites (e.g., house of worship, governmental office), mass and more targeted types of shootings, bombings, fire setting, and vehicle-based ramming attacks. This article provides an overview of key issues surrounding terrorism and violent extremism, especially as they can impact youth, schools, and families. Characteristics of violent extremism, radicalization processes, subsequent types of harm, and prevention approaches are discussed. Issues impacting students and schools and the work of school psychologists are also considered. The article closes with broader recommendations for moving forward.


Assuntos
Instituições Acadêmicas , Terrorismo , Violência , Humanos , Estados Unidos , Terrorismo/psicologia , Violência/psicologia , Adolescente , Família/psicologia , Estudantes/psicologia
4.
Nephrol Nurs J ; 51(4): 377-388, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39230467

RESUMO

The objective of this systematic review was the evaluation of the burden of family caregivers of patients on hemodialysis and its correlation with caregivers' quality of life. Articles from PubMed and Scopus published between 2012 to 2022 were retrieved from using the key words burden, family caregivers, quality of life, and hemodialysis patients. Articles reviewed included quantitative data indicating the family caregiver burden ranged from moderate to severe. The correlation between burden and quality of life was negative. Nephrology nurses in hemodialysis units should contribute to the design and implementation of educational programs and support strategies for family caregivers of patients on hemodialysis to support caregivers, reduce their burden, and improve their quality of life.


Assuntos
Cuidadores , Qualidade de Vida , Diálise Renal , Humanos , Cuidadores/psicologia , Efeitos Psicossociais da Doença , Falência Renal Crônica/enfermagem , Falência Renal Crônica/terapia , Família/psicologia , Sobrecarga do Cuidador/psicologia
5.
Cogn Sci ; 48(9): e13484, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39228272

RESUMO

When people talk about kinship systems, they often use co-speech gestures and other representations to elaborate. This paper investigates such polysemiotic (spoken, gestured, and drawn) descriptions of kinship relations, to see if they display recurring patterns of conventionalization that capture specific social structures. We present an exploratory hypothesis-generating study of descriptions produced by a lesser-known ethnolinguistic community to the cognitive sciences: the Paamese people of Vanuatu. Forty Paamese speakers were asked to talk about their family in semi-guided kinship interviews. Analyses of the speech, gesture, and drawings produced during these interviews revealed that lineality (i.e., mother's side vs. father's side) is lateralized in the speaker's gesture space. In other words, kinship members of the speaker's matriline are placed on the left side of the speaker's body and those of the patriline are placed on their right side, when they are mentioned in speech. Moreover, we find that the gesture produced by Paamese participants during verbal descriptions of marital relations are performed significantly more often on two diagonal directions of the sagittal axis. We show that these diagonals are also found in the few diagrams that participants drew on the ground to augment their verbo-gestural descriptions of marriage practices with drawing. We interpret this behavior as evidence of a spatial template, which Paamese speakers activate to think and communicate about family relations. We therefore argue that extending investigations of kinship structures beyond kinship terminologies alone can unveil additional key factors that shape kinship cognition and communication and hereby provide further insights into the diversity of social structures.


Assuntos
Cognição , Comunicação , Família , Gestos , Humanos , Masculino , Feminino , Família/psicologia , Adulto , Fala , Pessoa de Meia-Idade
7.
J Fam Nurs ; 30(3): 255-266, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-39268852

RESUMO

This study aimed to assess the feasibility of a complex family nursing intervention (SAFIR©) designed to support families of patients with acquired brain injuries during the early phase of hospitalization, using a one-group pre- and post-test design with a one-month follow-up. Family members participated in four family meetings. Quantitative data were collected using an intervention protocol checklist and questionnaires. Qualitative data were gathered through semi-structured interviews, written open-ended questions, and note-taking. Feasibility outcomes revealed a family recruitment rate of 15.4% and a retention rate of 100%. Protocol adherence ranged from 94% in Phase 1 to 78% in Phase 3. Our results indicated that the intervention was meaningful and suitable for family members (n=7), healthcare provider (n=1), and nursing managers (n=6). From a sustainability perspective, our findings suggest the need to formally involve the entire inter-professional team in the intervention. Further evaluation of the intervention is warranted through a large-scale experimental.


Assuntos
Lesões Encefálicas , Família , Estudos de Viabilidade , Hospitalização , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Lesões Encefálicas/enfermagem , Adulto , Família/psicologia , Idoso , Inquéritos e Questionários , Enfermagem Familiar/métodos , Enfermagem Familiar/normas , Pesquisa Qualitativa
9.
Sci Rep ; 14(1): 20510, 2024 09 03.
Artigo em Inglês | MEDLINE | ID: mdl-39227747

RESUMO

Cancer is a deadly disease that affects millions of people worldwide and is a source of great difficulty, stress, and trauma not only for patients but also for their caregivers. The physical and emotional suffering that patients experience by patients can lead their caregivers to cope with constant anxiety, sadness, and uncertainty. Moreover, during the cancer treatment process, caregivers must make a great effort to meet the needs of patients and support them. This situation may negatively affect the quality of life and psychological health of cancer patients' caregivers and may lead them to experience trauma. The aim of this cross-sectional study was to examine posttraumatic growth's relationship with age, the transformative power of suffering, and hope in family caregivers of cancer patients. Participants consisted of 314 Turkish family caregivers of cancer patients (73.2% women; Mage = 39.89 years) selected by using convenience sampling method. Participants answered a data collection tool consisting of a demographic information form, the Posttraumatic Growth Inventory, Trait Hope Scale, and Transformative Power of Suffering Scale. Data were analyzed using descriptive statistics, the Pearson product-moment correlation coefficient analysis, simple mediation analysis, and moderated mediation analysis. The results of this study revealed that hope mediated the association between the transformative power of suffering and posttraumatic growth in family caregivers of cancer patients, whereas age moderated this relationship. Psychosocial support programs for cancer caregivers could benefit from incorporating interventions that explore the transformative potential of suffering and cultivate hope. Tailoring these interventions to address the specific needs of different age groups may enhance their effectiveness. Future researchers should investigate the factors associated with posttraumatic growth in caregivers across diverse cultures, age ranges, and cancer diagnoses.


Assuntos
Cuidadores , Neoplasias , Crescimento Psicológico Pós-Traumático , Humanos , Feminino , Masculino , Cuidadores/psicologia , Neoplasias/psicologia , Adulto , Turquia , Pessoa de Meia-Idade , Estudos Transversais , Qualidade de Vida , Adaptação Psicológica , Inquéritos e Questionários , Idoso , Adulto Jovem , Família/psicologia , Esperança , Estresse Psicológico/psicologia
10.
J Neuroeng Rehabil ; 21(1): 151, 2024 Sep 04.
Artigo em Inglês | MEDLINE | ID: mdl-39227911

RESUMO

BACKGROUND: Worldwide, children with cerebral palsy (CP) living in underserved communities face barriers to accessing motor therapy services. This study assessed the implementation and effectiveness of an 8-week, upper limb (UL) home-based intervention with a movement-tracking videogame (Bootle Blast) in Costa Rican children with CP. METHODS: Children established a weekly playtime goal and two UL activities of daily living (ADLs) that they would like to improve on. A multiple-baseline, single-case experimental design, was used with the Performance Quality Rating Scale (PQRS) as the repeated measure to track changes in performance of the selected ADLs between the baseline (usual care) and intervention (Bootle Blast) phases. The Canadian Occupational Performance Measure (COPM), the Box and Blocks Test (BBT) and the Children's Hand-Use Experience Questionnaire (CHEQ) were collected before and after the intervention. Technical barriers were documented during weekly video calls with a monitoring therapist. Treatment effect size, slope changes and percentage of non-overlapping data were identified for the PQRS. Descriptive statistics summarized results for the BBT, CHEQ, videogame logs (e.g., playtime) and technical barriers. RESULTS: Fifteen children participated and 13 completed the intervention. Both participants who dropped out did so after completing baseline assessments, but before experiencing Bootle Blast. Children's mean active playtime (i.e., mini-games targeting the UL) across the 8-weeks was 377 min, while mean total time spent engaging with Bootle Blast (active + passive play time [e.g., time navigating menus, reviewing rewards]) was 728 min. In total, eight technical issues (from five children) were reported, and all but three were resolved within 48 h. Partial effectiveness was associated with the intervention. Specifically, 85% of participants improved on the PQRS and 69% achieved clinically important improvements ≥ 2 points in performance on the COPM. Children improved by 1.8 blocks on average on the BBT, while on the CHEQ, five children had a clinically important increase of 10% of the total number of UL activities performed with both hands. CONCLUSION: Bootle Blast is a feasible and effective option to facilitate access and engage children with cerebral palsy in UL home rehabilitation. Trial registration Trial registration number: NCT05403567.


Assuntos
Atividades Cotidianas , Paralisia Cerebral , Estudos de Viabilidade , Jogos de Vídeo , Humanos , Paralisia Cerebral/reabilitação , Criança , Masculino , Feminino , Adolescente , Resultado do Tratamento , Extremidade Superior/fisiopatologia , Família , Estudos de Caso Único como Assunto , Serviços de Assistência Domiciliar
11.
Health Expect ; 27(5): e14178, 2024 10.
Artigo em Inglês | MEDLINE | ID: mdl-39229799

RESUMO

BACKGROUND: Children with medical complexity (CMC) have high healthcare utilization and face unique challenges during hospital admissions. The evidence describing their experiences of inpatient care is distributed across disciplines. The aim of this scoping review was to map the evidence related to the inpatient experience of care for CMC and their families, particularly related to key aspects and methodological approaches, and identify gaps that warrant further study. METHODS: This scoping review was conducted in accordance with JBI methodology and included all studies that reported experiences of acute hospital care for CMC/families. All study designs were included. Databases searched included EMBASE, CINAHL Plus with Full Text, Web of Science, MEDLINE(R) and APA PsycInfo from 2000 to 2022. Details about the participants, concepts, study methods and key findings were abstracted using a data abstraction tool. A thematic analysis was conducted. RESULTS: Forty-nine papers were included: 27 qualitative studies, 10 quantitative studies, six mixed methods studies, two descriptive studies and four reviews. Some quantitative studies used validated instruments to measure experience of care, but many used non-validated surveys. There were a few interventional studies with a small sample size. Results of thematic analysis described the importance of negotiating care roles, shared decision-making, common goal setting, relationship-building, communication, sharing expertise and the hospital setting itself. CONCLUSION: CMC and families value relational elements of care and partnering through sharing expertise, decision-making and collaborative goal-setting when admitted to hospital. PATIENT OR PUBLIC CONTRIBUTION: This review was conducted in alignment with the principles of patient and family engagement. The review was conceptualized, co-designed and conducted with the full engagement of the project's parent-partner. This team member was involved in all stages from constructing the review question, to developing the protocol, screening articles and drafting this manuscript.


Assuntos
Pacientes Internados , Humanos , Criança , Família , Hospitalização
12.
Child Adolesc Psychiatr Clin N Am ; 33(4): 709-728, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39277321

RESUMO

Medications for opioid use disorder (MOUD) are the most effective treatment for OUD. Many patients struggle with adherence, but young adults face unique developmental barriers and experience higher relapse rates. The Youth Opioid Recovery Support (YORS) intervention is a developmentally informed behavioral approach to increase medication adherence through assertive outreach, family involvement, low-barrier access to extended-release MOUD, and contingency management. Early studies have shown promising results, and a randomized controlled trial is underway. Here we describe the implementation of YORS using case examples, offer guidance on adapting YORS to real-world clinical settings, and explore future directions for research and practice.


Assuntos
Transtornos Relacionados ao Uso de Opioides , Humanos , Transtornos Relacionados ao Uso de Opioides/terapia , Adolescente , Serviços Comunitários de Saúde Mental/métodos , Adesão à Medicação , Tratamento de Substituição de Opiáceos/métodos , Adulto Jovem , Família
13.
Int J Older People Nurs ; 19(5): e12647, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39277879

RESUMO

BACKGROUND: Due to rapid increases in the number of Korean people with dementia, dementia has become a priority health issue in South Korea. Likewise, the well-being of family caregivers of people with dementia has also become an issue of concern. However, little is known about the resilience of Korean family caregivers because there is a lack of review studies from a Korean cultural perspective about the resilience of family caregivers of people with dementia. OBJECTIVES: The purpose of this scoping review was to investigate quantitative studies related to resilience theories, measurement instruments, correlates and resilience interventions for family caregivers of people with dementia. METHOD: This review was conducted according to the Joanna Briggs Institute based on Arksey and O'Malley. Nine databases were searched to retrieve evidence published in English or Korean between January 2000 and September 2022. Studies with a quantitative research design reporting the resilience of family caregivers of people with dementia based on a resilience theory framework were included. RESULTS: A total of 13 studies were included in this review. All studies used either a modified McCubbin and McCubbin's family stress, adjustment and adaptation model or Walsh's family resilience model. All resilience instruments were used without cross-cultural adaptation. Family adaptation, social support, life satisfaction, family (di)stress and caregiver burden were associated with resilience among family caregivers. A few family resilience-enhancing programmes showed a positive effect on caregiver resilience. CONCLUSION: This review noted that all the resilience measures documented in this study need to test for cultural adaptation in a Korean context. Further research is required to develop and implement family-based, culturally tailored interventions to effectively enhance Korean resilience for family caregivers of people with dementia. IMPLICATIONS FOR PRACTICE: Gerontological nurses should include Korean family caregivers in their nursing care and assess whether family caregivers have depression or suicidal thoughts to promote better health outcomes for caregivers and their family members.


Assuntos
Cuidadores , Demência , Resiliência Psicológica , Humanos , Cuidadores/psicologia , Demência/enfermagem , Demência/etnologia , República da Coreia/etnologia , Adaptação Psicológica , Apoio Social , Família/psicologia
14.
Sci Rep ; 14(1): 21357, 2024 09 12.
Artigo em Inglês | MEDLINE | ID: mdl-39266693

RESUMO

When individuals face life pressure or significant family changes, individuals with better family adaptation can better survive the crisis. Although the influencing factors of family adaptation have been investigated, the application of potential profile analysis has yet to be found. This analytical approach can reveal different potential categories of family adaptation, providing new perspectives for theoretical development and interventions. This study used latent profile analysis to explore family adaptation levels in breast cancer patients and identify different latent categories, examining their characteristic differences. A cross-sectional study was conducted in Jinzhou, China, from July 2023 to March 2024. The questionnaire included Sociodemographic and clinical characteristics, Benefit Finding Scale (BFS), Dyadic Coping Scale (DCI), Chinese Perceived Stress Scales (PSS), and Family adaptability and cohesion evaluation scales (FACES). Mplus8.3 and SPSS26.0 software were used for data analysis. The latent profile analysis (LPA) method was used to fit the family adaptations of breast cancer patients. Three latent categories of family adaptation were identified: low-level family adaptation (21.5%), medium level family adaptation (47.8%), and high-level family adaptation (30.6%). All 14 items with high levels of family adaptation scored higher than the other two groups. In particular, out of all the categories, item 9, "The idea of educating children is sound," scored highest. Compared with the low-level group, the influential factors of family adaptation in the high-level group were BFS, DCI, PSS, relapse and personal monthly income; The factors influencing family adaptation at the middle level are DCI, BFS, breast cancer type, family history of breast cancer, and personal monthly income. Compared with the medium level group, PSS and DCI were the influential factors of family adaptation in the high-level group. Family adaptation in breast cancer patients can be divided into three categories: low-level, medium-level, and high-level. There were significant differences among different categories of family adaptation levels in "personal monthly income", "family history of breast cancer", "type of breast cancer", "recurrence", "dyadic coping", "benefit finding", and "perception stress".


Assuntos
Adaptação Psicológica , Neoplasias da Mama , Humanos , Feminino , Neoplasias da Mama/psicologia , Estudos Transversais , Pessoa de Meia-Idade , Adulto , China , Inquéritos e Questionários , Família/psicologia , Estresse Psicológico/psicologia , Idoso
15.
Psychiatry Res Neuroimaging ; 344: 111884, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39236485

RESUMO

Obsessive-compulsive disorder (OCD) is characterized by structural alteration within white matter tissues of cortico-striato-thalamo-cortical, temporal and occipital circuits. However, the presence of microstructural changes in the white matter tracts of unaffected first-degree relatives of patients with OCD as a vulnerability marker remains unclear. Therefore, here, diffusion-tensor magnetic resonance imaging (DTI) data were obtained from 29 first-degree relatives of patients with OCD and 59 healthy controls. We investigated the group differences in FA using whole-brain analysis (DTI analysis). For additional regions of interest (ROI) analysis, we focused on the posterior thalamic radiation and sagittal stratum, shown in recent meta-analysis of patients with OCD. In both whole-brain and ROI analyses, using a strict statistical threshold (family-wise error rate [FWE] corrected p<.05 for whole-brain analyses, and p<.0125 (0.05/4) with Bonferroni correction for ROI analyses), we found no significant group differences in FA. Subtle reductions were observed in the anterior corona radiata, forceps minor, cingulum bundle, and corpus callosum only when a lenient statistical was applied (FWE corrected p<.20). These findings suggest that alterations in the white matter microstructure of first-degree relatives, as potential vulnerability markers for OCD, are likely subtle.


Assuntos
Imagem de Tensor de Difusão , Família , Transtorno Obsessivo-Compulsivo , Substância Branca , Humanos , Transtorno Obsessivo-Compulsivo/diagnóstico por imagem , Transtorno Obsessivo-Compulsivo/patologia , Transtorno Obsessivo-Compulsivo/genética , Substância Branca/diagnóstico por imagem , Substância Branca/patologia , Masculino , Adulto , Feminino , Imagem de Tensor de Difusão/métodos , Encéfalo/diagnóstico por imagem , Encéfalo/patologia , Pessoa de Meia-Idade , Adulto Jovem
16.
BMC Palliat Care ; 23(1): 226, 2024 Sep 12.
Artigo em Inglês | MEDLINE | ID: mdl-39266990

RESUMO

BACKGROUND: Delivering serious news is usually challenging for healthcare professionals and the pandemic of COVID-19 and related restrictions brought additional challenges in this process. AIMS: To explore the experience of bereaved relatives with receiving serious news from healthcare professionals during the pandemic COVID-19. DESIGN: A qualitative study using thematic analysis and a codebook approach of data collected in semi-structured interviews with bereaved relatives. SETTING/PARTICIPANTS: Data were collected from July to August 2022 in person/via phone with bereaved relatives who lost their relatives during the pandemic (from March 2020 to March 2022). Participants were recruited using a convenience sample and snowball method through social media and through one university hospital palliative care unit that invited bereaved relatives of deceased patients treated at the unit to participate in this study. RESULTS: A total of 22 participants, consisting of 4 men and 18 women, were interviewed for this study. Most of the participants were sons or daughters of individuals who had died (5 grandchildren, 14 sons/daughters, 2 spouses, 1 great-niece). Six themes were identified: Burden caused by visit ban, Fear of COVID-19, Inappropriate behaviour and communication of healthcare professionals, High need for emotional support, Need for detailed and honest communication, Tendency to make excuses for mistakes and lapses by healthcare professionals. CONCLUSIONS: Delivering serious news during a pandemic was negatively influenced by a lack of contact with patients and a lack of support and empathetic communication with staff. Overcoming these circumstances can be achieved by frequent communication using various communication tools (such as videoconferences or phone calls), and maintaining empathy and honesty in the communication process.


Assuntos
Luto , COVID-19 , Família , Pandemias , Pesquisa Qualitativa , Humanos , COVID-19/psicologia , COVID-19/epidemiologia , Feminino , Masculino , Pessoa de Meia-Idade , Família/psicologia , Adulto , Idoso , SARS-CoV-2 , Entrevistas como Assunto/métodos , Comunicação , Apoio Social
17.
BMC Health Serv Res ; 24(1): 1058, 2024 Sep 12.
Artigo em Inglês | MEDLINE | ID: mdl-39267018

RESUMO

BACKGROUND: Effective communication between patients and healthcare providers in the emergency department (ED) is challenging due to the dynamic nature of the ED environment. This study aimed to trial a chat service enabling patients in the ED and their family members to ask questions freely, exploring the service's feasibility and user experience. OBJECTIVES: To identify the types of needs and inquiries from patients and family members in the ED that could be addressed through the chat service and to assess the user experience of the service. METHODS: We enrolled patients and family members aged over 19 years in the ED, providing the chat service for up to 4 h per ED visit. Trained research nurses followed specific guidelines to respond to messages from the participants. After participation, participants were required to complete a survey. Those who agreed also participated in interviews to provide insights on their experiences with the ED chat service. RESULTS: A total of 40 participants (20 patients and 20 family members) sent 305 messages (72 by patients and 233 by family members), with patients sending an average of 3.6 messages and family members 11.7. Research nurses resolved 41.4% of patient inquiries and 70.9% of family member inquiries without further healthcare provider involvement. High usability was reported, with positive feedback on communication with healthcare workers, information accessibility, and emotional support. CONCLUSIONS: The ED chat service was found to be feasible and led to positive user experiences for both patients and their family members.


Assuntos
Serviço Hospitalar de Emergência , Família , Humanos , Masculino , Feminino , Adulto , Família/psicologia , Pessoa de Meia-Idade , Comunicação , Idoso , Satisfação do Paciente , Inquéritos e Questionários , Adulto Jovem
18.
Rev Med Chil ; 152(1): 36-48, 2024 Jan.
Artigo em Espanhol | MEDLINE | ID: mdl-39270095

RESUMO

INTRODUCTION: The COVID-19 pandemic marked a milestone in the history of medicine worldwide. Together with the humanitarian drama it represented, the problems that arose are promoting lines of research in multiple fields. One of these fields is the aspects related to medical communication and end-of-life care. This paper reports the experiences and perceptions of relatives of patients who died during the pandemic with a psychospiritual support intervention in a public hospital in the Metropolitan Region, Chile, called "farewell". METHODS: A qualitative study was conducted with a phenomenological approach based on in-depth interviews. From this, categories were derived that allowed a systematization of the observation of the experiences. RESULTS: Among the results, the impact of the circumstances and the communication provided by the medical team on grief should be highlighted. The use of the word "farewell" emerges as a useful, albeit ambiguous, communicative tool when it comes to adequately framing an end-of-life process. CONCLUSIONS: It is argued that the end of life is an area that requires physical and psychospiritual spaces, and adequate training at all levels to do justice to a highly relevant moment in the care of people.


Assuntos
COVID-19 , Família , Pesquisa Qualitativa , Assistência Terminal , Humanos , COVID-19/psicologia , COVID-19/epidemiologia , Chile/epidemiologia , Família/psicologia , Assistência Terminal/psicologia , Masculino , Feminino , SARS-CoV-2 , Atitude Frente a Morte , Adulto , Pandemias , Pessoa de Meia-Idade , Pesar , Entrevistas como Assunto , Idoso , Comunicação
19.
Int J Palliat Nurs ; 30(8): 444-450, 2024 Aug 02.
Artigo em Inglês | MEDLINE | ID: mdl-39276140

RESUMO

BACKGROUND: In Indonesia, the diagnosis of a serious illness is often mediated through the patient's family, reflecting the cultural importance of family involvement in the patient's care and collective decision-making. AIM: To use a case study to show the difficulty that healthcare professionals face telling the patient the truth about their condition in Indonesia. METHOD: The Kagawa-Singer and Blackhall ABCDE framework was used during truth-telling dilemmas to assess patients' and families' attitudes (A), beliefs (B), contexts (C), decision-making styles (D) and environments (E). FINDINGS: Studies have shown that family involvement in health-related communications can alleviate the stress associated with the disclosure of a serious illness. Palliative care nurses must acknowledge the importance of family in the patient's cultural context, by involving them in the disclosure of a diagnosis and disease trajectory by integrating every element of the ABCDE model in palliative care.


Assuntos
Cuidados Paliativos , Revelação da Verdade , Humanos , Indonésia , Relações Profissional-Família , Feminino , Tomada de Decisões , Masculino , Família/psicologia , Adulto , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Atitude do Pessoal de Saúde
20.
Sci Rep ; 14(1): 21171, 2024 09 11.
Artigo em Inglês | MEDLINE | ID: mdl-39256441

RESUMO

Understanding what matters to people with Parkinson's and their family is essential to derive relevant clinical outcome measures and guide clinical care. The purpose of this study was to explore what is important to people with Parkinson's disease vs. family over time. A qualitative content-analysis of online survey data collected by Parkinson's UK was conducted to identify types and frequencies of important symptoms and impacts of Parkinson's for people with the disease vs. family of people with Parkinson's. Independent T-tests were used to identify significance of between group differences for patients vs. family at < 2, 2-5, 6-10, 11-20, > 20-year durations. ANOVA was used to assess for within group differences by disease duration. We found that symptom priority changed significantly over time with longer disease duration. Tremor was reported less often later on, whereas mobility, dyskinesias, gait and speech/communication symptoms gained priority. In general, patients identified movement-related symptoms (e.g., walking, bradykinesia) as the most bothersome at all durations while family more strongly prioritized the physical and psychosocial impacts of disease (e.g., mobility, safety, interpersonal interactions, independence, and family impact). We conclude that important differences exist between family and patient perspectives of what matters and change over time with longer duration of disease.


Assuntos
Família , Doença de Parkinson , Humanos , Doença de Parkinson/psicologia , Doença de Parkinson/fisiopatologia , Masculino , Feminino , Família/psicologia , Pessoa de Meia-Idade , Idoso , Inquéritos e Questionários , Qualidade de Vida
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