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1.
Clin Rehabil ; 38(8): 1118-1129, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38747978

RESUMO

OBJECTIVE: This study aimed to understand the impact of pain management programmes, focusing on the unwanted effects and their influence on patients' long-term use of self-management strategies. DESIGN: Qualitative study. SETTING: Specialist musculoskeletal hospital in North London, England. PARTICIPANTS: Patients with chronic musculoskeletal pain that have completed a pain management programme. INTERVENTION: Multidisciplinary pain management programmes. MAIN MEASURES: Data were collected regarding patients' experiences and unwanted effects from the pain management programme using semi-structured interviews. Data were analysed using thematic analysis. RESULTS: Fourteen participant interviews were included in the analysis (median age 54 years, 12 females). Four themes were generated from the data: Benefits and burdens, Pain management programme and real life, Social support and Healthcare interventions. Unwanted effects included heightened anxiety related to negative interactions with peers, being in a new environment, worries about ability to cope with the programme, social anxiety from being in a group, the strain on families due to participants being away from home and a sense of abandonment at end of the programme. Burdens associated with implementing pain management strategies were identified, including the emotional burden of imposing their self-management on close family and competing demands with time and energy spent on self-management at the expense of work or home commitments. CONCLUSIONS: Pain management programmes have an important role in helping patients to learn how to self-manage chronic pain. Their unwanted effects and the treatment burdens associated with long-term self-management may be an important consideration in improving the longevity of their beneficial effects.


Assuntos
Dor Crônica , Manejo da Dor , Pesquisa Qualitativa , Humanos , Feminino , Masculino , Pessoa de Meia-Idade , Manejo da Dor/métodos , Dor Crônica/terapia , Idoso , Adulto , Dor Musculoesquelética/terapia , Dor Musculoesquelética/reabilitação , Dor Musculoesquelética/psicologia , Autogestão , Adaptação Psicológica , Entrevistas como Assunto , Apoio Social , Equipe de Assistência ao Paciente , Autocuidado
2.
Public Health ; 230: 183-189, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38565064

RESUMO

OBJECTIVES: To examine the associations between food insecurity and health, access to care, affordability of care, financial burden of care, and financial hardships among US adults during the COVID-19 pandemic and examine whether the associations were less pronounced among adults with safety nets. STUDY DESIGN: We conducted a retrospective longitudinal cohort study using the 2020-2021 Medical Expenditure Panel Survey. METHODS: Linear probability models were used to assess the associations between food insecurity in one year and the outcomes of interest in the following year while adjusting for baseline characteristics. We performed the analyses for the entire population and then conducted stratified analyses for adults with and without Supplemental Nutrition Assistance Program (SNAP) benefits or Medicaid coverage. RESULTS: Compared with food-secure adults, food-insecure adults were 9.1 percentage points less likely to report life satisfaction and 9.9, 10.2, and 13.2 percentage points more likely to experience delays in getting medical care, postpone or forgo medical care because of cost, and struggle with paying medical bills. Food-insecure adults were 30.4, 27.2, and 23.5 percentage points more likely to face challenges in affording necessities, paying utility bills, and meeting rent or mortgage payments on time than food-secure adults. Notably, the strengths of these associations were attenuated among adults with SNAP benefits or Medicaid coverage. CONCLUSIONS: Food insecurity was associated with poor health, limited access to and affordability of care, and a greater financial burden of care among US adults during the pandemic. Nevertheless, safety net programs can play a critical role in alleviating adverse consequences.


Assuntos
COVID-19 , Assistência Alimentar , Adulto , Estados Unidos/epidemiologia , Humanos , Estresse Financeiro , Pandemias , Estudos Longitudinais , Estudos Retrospectivos , Abastecimento de Alimentos , COVID-19/epidemiologia , Insegurança Alimentar , Custos e Análise de Custo , Acessibilidade aos Serviços de Saúde
3.
Arch Psychiatr Nurs ; 51: 95-101, 2024 08.
Artigo em Inglês | MEDLINE | ID: mdl-39034101

RESUMO

Evidence shows that caring for a family member with a psychotic disorder generates a significant emotional impact and repercussions on social functioning. However, this caregiving experience can be influenced by cultural factors. The aim of this study is to explore the experience and perception of a group of family caregivers of patients with psychotic disorders of different durations regarding the emotional and social functioning repercussions of caregiving on them in Andalusia. Three focus groups (28 participants) were conducted. Data were subject to a thematic analysis. Three themes emerged from the data: 1) Emotional invasion; 2) Disruption in the caregiver's life project; and 3) Changes in the family system. Participants reported experiencing sadness, fear, overwhelm, hopelessness, and uncertainty. Caregivers' accounts reflected an interruption of their daily tasks, as well as the need to reformulate plans or goals outside the family life that require long-term commitment, such as professional development or even their residence. The narratives indicated an impact on all roles within the family system, particularly for the mother. The results are consistent with existing research. Healthcare professionals and programs should take into account the costs associated with caregiving in order to minimize them, given the impact it has on both the patient's and the caregivers' health.


Assuntos
Cuidadores , Grupos Focais , Transtornos Psicóticos , Pesquisa Qualitativa , Humanos , Cuidadores/psicologia , Transtornos Psicóticos/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Adulto , Espanha , Emoções , Família/psicologia , Efeitos Psicossociais da Doença , Adaptação Psicológica
4.
J Surg Res ; 283: 550-558, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36442254

RESUMO

INTRODUCTION: Patient burden of cancer care can be significant, especially for cancers like melanoma where patients are living longer, even with advanced disease. The purpose of this study is to compare the burden of treatment of melanoma patients with in-transit metastases (ITM). There are multiple treatment options for ITM, but no standard due to lack of large cohort comparative studies; thus, the anticipated burden of care may influence therapy choice. METHODS: Included patients had in-transit melanoma without distant metastasis and were managed at our institution from July 1, 2015 through December 31, 2020 using a combination of surgery, systemic, intralesional, and radiation therapy. We compared treatment burden, (number of treatments, clinic visits, inpatient hospital days, and distance traveled) and response rates using Kruskal-Wallis and chi-squared tests. Recurrence-free survival and estimated charges were exploratory endpoints. RESULTS: There were 42 patients who met the inclusion criteria. As initial treatment, patients had surgery (n = 20), surgery with adjuvant (n = 6), systemic (n = 9), and intralesional therapy (n = 2). Surgery had the lowest treatment burden (median of 1 treatment, 3 clinic visits, and 0 inpatient days) while surgery with adjuvant systemic therapy had the highest burden (median of 13 treatments, 12 clinic visits, and 0 inpatient days). Systemic, intralesional, and radiation therapy were used more often for recurrent ITM. Travel distance (P = 0.88) and response rates did not statistically differ between the four options for first line therapy (P = 0.99). At a median follow-up time of 8.8 mo, 22 (52%) of the cohort required more than 1 therapy to manage recurrent or progressive disease and 14 (33%) progressed to distant disease. CONCLUSIONS: Treatment of in-transit melanoma is associated with high burden of care and often requires multiple therapies, even with maximally effective first treatment choice. Factors evaluated in this study may be used to set expectations of treatment course for newly diagnosed patients and may aid in patients' decisions on therapy selection.


Assuntos
Melanoma , Neoplasias Cutâneas , Humanos , Neoplasias Cutâneas/patologia , Melanoma/patologia , Terapia Combinada , Resultado do Tratamento
5.
Epilepsy Behav ; 145: 109297, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37336137

RESUMO

AIM: This study was conducted to examine the relationship between coping with stress status and the burden of care of the caregivers of patients with epilepsy. MATERIALS AND METHODS: This descriptive correlational study was carried out with a total of 230 voluntary caregivers of patients with epilepsy who visited the neurology clinics and outpatient clinics of a training and research hospital in the southeastern part of Turkiye between March 2022 and February 2023. Study data were collected through the Personal Information Form, the Zarit Caregiver Burden Assessment and the Ways of Coping Scale. Descriptive statistics and multiple regression analysis were used for the evaluation of the data. FINDINGS: While the mean score of the caregivers from the Zarit Caregiver Burden Assessment was 41.20 ± 12.44, they had mean scores of 12.12 ± 3.25, 8.93 ± 1.93, 12.24 ± 3.61, 8.77 ± 3.17, and 7.89 ± 1.95, respectively, from the self-confident approach, optimistic approach, helpless approach, submissive approach, and social support-seeking approach sub-dimensions. In the study, a moderate positive statistically significant relationship was found between the caregivers' burden of care and the mean scores of the helpless and submissive approach sub-dimensions(p < 0.05). CONCLUSION: The caregivers' burden of care and coping with stress were at moderate levels. The helpless approach, which is one of the ineffective methods of coping with stress, was found to be higher. The helpless and submissive approaches were found to increase in this study as the caregivers' burden of care increased. IMPLICATIONS: The use of effective coping skills to reduce the level of personal burden of care would improve the caregiver's physical health and psychological well-being.


Assuntos
Cuidadores , Epilepsia , Humanos , Cuidadores/psicologia , Sobrecarga do Cuidador , Adaptação Psicológica , Estresse Psicológico/etiologia , Estresse Psicológico/psicologia , Efeitos Psicossociais da Doença
6.
BMC Health Serv Res ; 23(1): 1356, 2023 Dec 05.
Artigo em Inglês | MEDLINE | ID: mdl-38053176

RESUMO

BACKGROUND: Family carers face challenges that could significantly affect their health and the health of those they care for. However, these challenges are not well documented in low-income settings, including Uganda. We explored the challenges of caring for someone with chronic non-communicable disease (NCD) in Uganda. METHODS: We conducted a qualitative exploratory study at Hospice Africa, Uganda (an urban setting) and Hampton Health Center (a rural setting) in Uganda in February and March 2021. Family carers (n = 44) were recruited using snowball and purposive sampling techniques. Data were collected using focus group discussions and in-depth interviews, gathering family carer perspectives of (a) their caring role (b) their support needs, and (c) attitudes of the wider community. In total, four focus group discussions and 10 individual interviews were completed. RESULTS: The average age of carers was 46 years old. The majority of family care was provided by female relatives, who also experienced intersectional disadvantages relating to economic opportunities and employment. Family carers carried a huge burden of care, experiencing significant challenges that affected their physical health, and material and emotional well-being. These challenges also affected the quality of care of the patients for whom they cared. Carers struggled to provide for the basic needs of the patient including the provision of medication and transport to health facilities. Carers received no formal training and limited support to carry out the caring role. They reported that they had little understanding of the patient's illness, or how best to provide care. CONCLUSIONS: As NCDs continue to rise globally, the role of family caregivers is becoming more prominent. The need to support carers is an urgent concern. Family carer needs should be prioritised in policy and resource allocation. The need for a carer's toolkit of resources, and the enhancement of community support, have been identified.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Doenças não Transmissíveis , Humanos , Feminino , Pessoa de Meia-Idade , Cuidadores/psicologia , Doenças não Transmissíveis/terapia , Uganda , Pobreza , Família/psicologia
7.
Allergol Immunopathol (Madr) ; 51(5): 48-56, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37695230

RESUMO

OBJECTIVE: The present study aimed to evaluate the quality of life in children with food allergies, the accompanying depression and anxiety disorders, and caregiving burden of their mothers. MATERIAL AND METHODS: A total of 168 children with food allergy visiting our clinic and their mothers were included in the study group. The control group included 152 children who visited the healthy child follow-up clinic of our hospital and their mothers. Studying mothers' opinions, the Food Allergy Quality of Life Questionnaire Parent Form (FAQLQ-PF) was used for evaluating children, and the Beck's Depression Inventory, Beck's Anxiety Inventory, Temperament Evaluation of Memphis, Pisa, Paris, San Diego Auto-questionnaire, and Zarit Caregiver Burden Scales were used for evaluating mothers. RESULTS: No differences were noticed between the study and control group regarding mean age and gender distribution (P > 0.05). In the study, the FAQLQ-PF total and subscale scores of children with food allergies were determined according to the opinions of their mothers, and scores tended to increase with age (P < 0.0001). In addition, it was determined that mothers of children with food allergies had higher levels of anxiety, depression, and caregiving burden than mothers of the control group (P < 0.0001). CONCLUSION: In order to develop a multidisciplinary approach for children with food allergies, we conceived as appropriate to inform their families about the difficulties of caregiving and psychosocial disorders that could develop over time. They also must be informed to take preventive measures as well as the medical aspects of their children's disease.


Assuntos
Hipersensibilidade Alimentar , Qualidade de Vida , Criança , Humanos , Feminino , Sobrecarga do Cuidador , Mães , Ansiedade/epidemiologia , Hipersensibilidade Alimentar/epidemiologia
8.
Artigo em Alemão | MEDLINE | ID: mdl-36749365

RESUMO

BACKGROUND: The consequences of the COVID-19 pandemic have posed major challenges to different groups. One of these are informal caregivers. This study investigates the changes the pandemic has caused for informal caregivers and the extent to which quality of life and burden of care have changed for specific subgroups. METHODS: Data for this cross-sectional study was gathered in the summer of 2020 in a convenient sample of informal caregivers (< 67 years of age, N = 1143). In addition to sociodemographic data, information on the care situation, compatibility of care and work, as well as stress and quality of life was collected in an online survey. The analysis of care situations and compatibility of care and work is done descriptively. Logistic regression models are used for a subgroup analysis of quality of life and care burden. RESULTS: The care situation has changed for 54.7% of participants and has become more time consuming. For 70.8% of respondents, the COVID-19 pandemic has made it even more difficult to balance care-giving and work. However, most respondents were satisfied with their employers' pandemic management (65.9%). A sharp decline in the quality of life and an increase in the burden of care for informal caregivers was ascertained. Both developments are stronger for young and female caregivers and for those caring for people with a greater need of support. DISCUSSION: The results indicate that living situations worsened for a substantial proportion of informal caregivers during the COVID-19 pandemic. Policymakers should recognize additional challenges that informal caregivers have faced since the outbreak of the COVID-19 pandemic and how they vary by subgroups. It is important to include home-based informal care as well as other care settings in future pandemic concepts.


Assuntos
COVID-19 , Cuidadores , Humanos , Feminino , Qualidade de Vida , Pandemias , Estudos Transversais , Efeitos Psicossociais da Doença , Alemanha/epidemiologia , COVID-19/epidemiologia , Inquéritos e Questionários
9.
Curr Psychol ; 42(11): 9427-9439, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-34465971

RESUMO

The study aimed to understand the nature and context of mental health stigma among people living with a mental health condition and the subsequent effect on their caregivers. Semi-structured qualitative face to face interviews were conducted by trained mental healthcare professionals with mental health service users (n = 26) and caregivers (n = 24) in private rooms at a tertiary health facility, where service users were admitted. Following transcription and translation, data was analysed using framework analysis. There was limited knowledge about their mental health diagnosis by service users and generally low mental health literacy among service users and caregivers. Mental health service users reported experiences of stigma from their own families and communities. Caregivers reported withholding the patient's diagnosis from the community for fear of being stigmatised, and this fear of stigma carries the risk of negatively affecting care treatment-seeking. Limited mental health knowledge, coupled with a high prevalence of perceived family and community stigma among caregivers and service users, impedes the capacity of caregivers to effectively cope in supporting their family members living with mental illness. There is a need for interventions to provide psychoeducation, reduce community stigma, and support coping strategies for caregivers and people with mental health conditions.

10.
Genet Med ; 24(4): 831-838, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-35034852

RESUMO

PURPOSE: To better understand health care utilization and develop decision support tools, methods for identifying patients with suspected genetic diseases (GDs) are needed. Previous studies had identified inpatient-relevant International Classification of Diseases (ICD) codes that were possibly, probably, or definitely indicative of GDs. We assessed whether these codes identified GD-related inpatient, outpatient, and emergency department encounters among pediatric patients with suspected GDs from a previous study (the North Carolina Clinical Genomic Evaluation by Next-Generation Exome Sequencing [NCGENES] study). METHODS: Using the electronic medical records of 140 pediatric patients from the NCGENES study, we characterized the presence of ICD codes representing possible, probable, or definite GD-related diagnoses across encounter types. In addition, we examined codes from encounters for which initially no GD-related codes had been found and determined whether these codes were indicative of a GD. RESULTS: Among NCGENES patients with visits between 2014 and 2017, 92% of inpatient, 75% of emergency department, and 63% of outpatient encounters included ≥1 GD-related code. Encounters with highly specific (ie, definite) GD codes had fewer low-specificity GD codes than encounters with only low-specificity GD codes. We identified an additional 32 ICD-9 and 56 ICD-10 codes possibly indicative of a GD. CONCLUSION: Code-based strategies can be refined to assess health care utilization among pediatric patients and may contribute to a systematic approach to identify patients with suspected GDs.


Assuntos
Serviço Hospitalar de Emergência , Classificação Internacional de Doenças , Criança , Registros Eletrônicos de Saúde , Genômica , Humanos , Aceitação pelo Paciente de Cuidados de Saúde
11.
Pain Med ; 23(6): 1075-1083, 2022 05 30.
Artigo em Inglês | MEDLINE | ID: mdl-34387353

RESUMO

OBJECTIVE: This study examined factors influencing lay perceptions of a provider's clinical burden in providing care to a person with chronic pain. DESIGN: In a between-subjects design that varied three levels of pain severity (4, 6, or 8 out of 10) with two levels of medical evidence (low/high), participants rated the credibility of pain reported by a hypothetical patient and the psychosocial factors expected to mediate the effects of evidence and severity on a provider's burden of care. SETTING: A randomized vignette study in which community participants were recruited via Amazon Mechanical Turk. SUBJECTS: 337 community participants. METHODS: Using a Qualtrics platform, participants read one of six vignettes describing a hypothetical patient with varying levels of medical evidence and pain severity and then rated perceived pain severity, pain credibility, psychosocial variables, and burden. RESULTS: Serial mediation models accounted for all effects of medical evidence and pain severity on burden. Low medical evidence was associated with increased burden, as mediated through lower pain credibility and greater concerns about patient depression, opioid abuse, and learning pain management. Higher levels of reported pain severity were associated with increased burden, as mediated through greater pain discounting and concerns about opioid abuse. CONCLUSIONS: The lay public is skeptical of chronic pain that is not supported by medical evidence or is reported at high levels of severity, raising concerns about psychosocial complications and drug seeking and expectations of higher burden of care. Such negative stereotypes can pose obstacles to people seeking necessary care if they or others develop a chronic pain condition.


Assuntos
Dor Crônica , Transtornos Relacionados ao Uso de Opioides , Dor Crônica/tratamento farmacológico , Humanos , Manejo da Dor , Medição da Dor
12.
J Pediatr Nurs ; 64: 64-73, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35158294

RESUMO

AIM: To explore, synthesise and present findings of qualitative studies describing the experiences of mothers raising a child with cerebral palsy. DESIGN: A systematic literature review of the qualitative evidence. METHODS: A systematic search for qualitative studies published in the following databases: CINAHL (EBSCO), Medline via OVID, SCOPUS, and Google Scholar. The authors independently assessed eligibility, appraised methodological quality using the Critical Appraisal Skills Program tool for qualitative Research (CASP). An inductive thematic analysis method was adopted to synthesise major findings and to construct core concepts and themes. RESULTS: Five overarching themes reflecting the experiences and perceptions of mothers raising and caring for a child with cerebral palsy are developed: 1) adapting and making sacrifices; 2) guilt and cultural blame; 3) social stigma and marginalisation; 4) physical, environmental, and financial challenges and 5) healthcare experiences.


Assuntos
Paralisia Cerebral , Mães , Paralisia Cerebral/diagnóstico , Criança , Atenção à Saúde , Feminino , Humanos , Pesquisa Qualitativa
13.
S Afr J Psychiatr ; 28: 1824, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35402016

RESUMO

Background: Common mental health illnesses such as depression and anxiety disorders are increasing globally. There remain significant gaps in health services provision and support for mental illness linked to stigma in developing countries. Aim: Our study aimed to assess the feasibility and acceptability of a mental health intervention for caregivers of mental health service users. Setting: Low-income South African communities. Method: Our study qualitatively assessed the feasibility of an anti-stigma mental health intervention for family caregivers in low-income settings. The intervention was structured into five sessions delivered over three days. Caregivers attended all the sessions at a centralised community venue. Semi-structured qualitative interviews were held separately with caregivers (n = 10) and their service users (n = 9) eight weeks post-intervention. Interviews were translated verbatim from local languages to English prior to framework analysis. Results: Post-intervention, service users reported improved family relations and understanding of mental illness among family members. The intervention was reported as acceptable and helpful by caregivers as it increased knowledge, fostering better relationships with service users. Group discussions were noted as a critical driver of intervention success. Widespread mental health stigma within communities remained a key concern for caregivers and service users. Conclusion: With the government's drive for deinstitutionalisation, the need to integrate anti-stigma interventions within community mental health services is vital, as is the need for population-wide anti-stigma interventions to support the integration of mental health service users within communities.

14.
Pediatr Blood Cancer ; 68(10): e29141, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-34003566

RESUMO

BACKGROUND: Therapy for childhood acute lymphoblastic leukemia (ALL) is associated with substantial health care utilization and burden on families. Little is known about health care utilization during specific treatment phases. PROCEDURES: We identified children with ALL diagnosed during 2002-2012 in Ontario, Canada and treated according to Children's Oncology Group (COG) protocols. Disease and treatment data were chart abstracted. Population-based health care databases identified all outpatient visits, emergency department (ED) visits, and hospitalizations. In addition to comparing standard and intensified versions of treatment phases, we compared patients receiving different steroids (dexamethasone vs. prednisone) and different versions of interim maintenance (IM) (Capizzi vs. high-dose methotrexate [HD-MTX]). RESULTS: Six hundred thirty-seven children met inclusion criteria. During intensified consolidation, 76.2% of patients were hospitalized at least once, compared to only 32.3% of patients receiving standard consolidation (p < .0001). Similarly, 72.9% of patients receiving intensified delayed intensification (DI) were hospitalized during this phase compared to 50.3% of patients receiving standard DI (p < .0001). Among patients receiving a four-drug induction, those receiving dexamethasone had an 85% higher rate of ED visits (adjusted rate ratio [aRR] 1.85, 95th confidence interval [95CI] 1.14-3.00; p = .01) and a 44% higher rate of hospitalization (aRR 1.44, 95CI 1.24-1.68) compared to those receiving prednisone. Among high-risk B-ALL and T-ALL patients in IM, Capizzi MTX was not associated with an increased rate of ED visits versus HD-MTX. CONCLUSIONS: These results can be used to inform anticipatory guidance for families, particularly those undergoing intensified therapy. Our results also suggest that increased toxicity rates associated with dexamethasone during Induction seen in clinical trials reflect real-world practice.


Assuntos
Serviço Hospitalar de Emergência , Hospitalização , Pacientes Ambulatoriais , Leucemia-Linfoma Linfoblástico de Células Precursoras , Protocolos de Quimioterapia Combinada Antineoplásica , Criança , Dexametasona/uso terapêutico , Serviço Hospitalar de Emergência/estatística & dados numéricos , Hospitalização/estatística & dados numéricos , Humanos , Metotrexato/uso terapêutico , Ontário/epidemiologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Leucemia-Linfoma Linfoblástico de Células Precursoras/epidemiologia , Prednisona/efeitos adversos
15.
Epilepsy Behav ; 124: 108323, 2021 Sep 28.
Artigo em Inglês | MEDLINE | ID: mdl-34598099

RESUMO

INTRODUCTION: Caring for a child with epilepsy has a significant impact on parental quality of life. Seizure unpredictability and complications, including sudden unexpected death in epilepsy (SUDEP), may cause high parental stress and increased anxiety. Nocturnal supervision with seizure detection devices may lower SUDEP risk and decrease parental burden of seizure monitoring, but little is known about their added value in family homes. METHODS: We conducted semi-structured in-depth interviews with parents of children with refractory epilepsy participating in the PROMISE trial (NCT03909984) to explore the value of seizure detection in the daily care of their child. Children were aged 4-16 years, treated at a tertiary epilepsy center, had at least one nocturnal major motor seizure per week, and used a wearable seizure detection device (NightWatch) for two months at home. Data were analyzed using inductive thematic analysis. RESULTS: Twenty three parents of nineteen children with refractory epilepsy were interviewed. All parents expressed their fear of missing a large seizure and the possible consequences of not intervening in time. Some parents felt the threat of child loss during every seizure, while others thought about it from time to time. The fear could fluctuate over time, mainly associated with fluctuations of seizure frequency. Most parents described how they developed a protective behavior, driven by this fear. The way parents handled the care of their child and experienced the burden of care influenced their perceptions on the added value of NightWatch. The experienced value of NightWatch depended on the amount of assurance it could offer to reduce their fear and the associated protective behavior as well as their resilience to handle the potential extra burden of care, due to false alarms or technical problems. CONCLUSION: Healthcare professionals and device companies should be aware of parental protective behavior and the high parental burden of care and develop tailored strategies to optimize seizure detection device care.

16.
Colorectal Dis ; 23(11): 2911-2922, 2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-34310835

RESUMO

AIM: The aim of this work was to examine the burden of further treatments in patients with colorectal cancer following a decision about lung metastasectomy. METHOD: Five teams participating in the Pulmonary Metastasectomy in Colorectal Cancer (PulMiCC) study provided details on subsequent local treatments for lung metastases, including the use of chemotherapy. For patients in three groups (no metastasectomy, one metastasectomy or multiple local interventions), baseline factors and selection criteria for additional treatments were examined. RESULTS: The five teams recruited 220 patients between October 2010 and January 2017. No lung metastasectomy was performed in 51 patients, 114 patients had one metastasectomy and 55 patients had multiple local interventions. Selection for initial metastasectomy was associated with nonelevated carcinoembryonic antigen, fewer metastases and no prior liver metastasectomy. These patients also had better Eastern Cooperative Oncology Group scores and lung function at baseline. Four sites provided information on chemotherapy in 139 patients: 79 (57%) had one to five courses of chemotherapy, to a total of 179 courses. The patterns of survival after one or multiple metastasectomy interventions showed evidence of guarantee-time bias contributing to an impression of benefit over no metastasectomy. After repeated metastasectomy, a significantly higher risk of death was observed, with no apparent reduction in chemotherapy usage. CONCLUSION: Repeated metastasectomy is associated with a higher risk of death without reducing the use of chemotherapy. Continued monitoring without surgery might reassure patients with indolent disease or allow response assessment during systemic treatment. Overall, the carefully collected information from the PulMICC study provides no indication of an important survival benefit from metastasectomy.


Assuntos
Neoplasias Colorretais , Neoplasias Pulmonares , Metastasectomia , Estudos de Coortes , Neoplasias Colorretais/terapia , Humanos , Neoplasias Pulmonares/terapia , Prognóstico , Taxa de Sobrevida
17.
Health Qual Life Outcomes ; 18(1): 261, 2020 Aug 03.
Artigo em Inglês | MEDLINE | ID: mdl-32746921

RESUMO

INTRODUCTION: Caring for patients with chronic disorders can lead to different problems for caregivers in physical, psychological, social, family, and financial domains. High levels of burden of care can make caregivers vulnerable to physical and psychological conditions and influence their quality of life. Therefore, the goal of the present study was to estimate the overall percentage of burden of care in caregivers of Iranian patients with chronic disorders. METHODS: A total of 25 articles published from inception to February 2019 were reviewed. Search for articles was conducted in international (Scopus, Web of Science, and PubMed) and domestic (Scientific Information Database (SID) and MagIran) databases, using the following keywords: "Caregiver," "Burden," and "Iran," and their possible combinations. The data were analyzed using the meta-analysis method and the random effects model. All the analyses were performed using STATA, version 14. RESULTS: The overall percentage of burden of care in caregivers of Iranian patients with chronic disorders was 53.28% (95% CI: 46.13-60.43). The highest percentage of burden of care was related to dialysis (62.75; 95% CI: 56.11-69.38), mental disorders (58.69; 95% CI: 49.70-67.69), and Alzheimer's disease (57.07; 95% CI: 46.23-67.92), respectively; and the lowest percentage of burden of care was related to diabetes (34.92; 95% CI: 18.01-51.82). CONCLUSIONS: Caregivers of Iranian patients with chronic disorders experience high levels of burden of care, especially those caring for patients undergoing dialysis, patients with mental disorders, and patients with Alzheimer's disease. Therefore, necessary measures need to be taken by Iranian health care officials to reduce burden of care in caregivers.


Assuntos
Cuidadores/psicologia , Qualidade de Vida/psicologia , Doença Crônica/terapia , Humanos , Irã (Geográfico)
18.
BMC Vet Res ; 16(1): 190, 2020 Jun 11.
Artigo em Inglês | MEDLINE | ID: mdl-32527313

RESUMO

BACKGROUND: There is growing awareness that caring for a chronically ill pet may have a detrimental impact on their owner's quality of life. Companion animal orthopaedic disease has received little research interest in this context. Canine osteoarthritis is known to negatively affect the welfare of many dogs in the United Kingdom, but its consequences for their owners has not previously been described. The aim of this study was to use a qualitative methodology to explore the impacts on a dog owner that occur following their dog's diagnosis with osteoarthritis. Owners of osteoarthritic dogs based in the United Kingdom (UK) were recruited through veterinary practices to participate in semi-structured interview about life with their dog. Interviews were transcribed verbatim and thematic analysis was used to construct key themes. This publication describes the theme that focused on the impact(s) that the dog's condition had had on the life of their owner. RESULTS: Forty owners of 35 dogs of a range of breeds and ages were interviewed. A wide range of negative impacts on the physical, mental and financial health of owners were described. Few had any prior experience of canine osteoarthritis, and owners of young dogs appeared to be particularly affected by the diagnosis. Owners detailed increasing worry over time about their pet's condition, frequently combined with a growing need to physically assist their dog. Sometimes this led them to seek information about, and purchase, adjunctive therapies and products. The dog's reduced mobility and need for medications progressively limited their own lifestyles and ability to have time away from their pet. Owners typically described a strong bond with their dog as a motivator to provide ongoing care. CONCLUSIONS: The negative impacts on owners of caring for an osteoarthritic dog appear multi-faceted and may be sustained over many years, particularly if the dog is young at diagnosis. Owners may be highly motivated to improve their dog's mobility and to reduce the impact the condition has on their own lives, yet they may be unsure how to achieve this. Veterinary professionals should inform and support these owners as much as possible.


Assuntos
Doenças do Cão , Vínculo Humano-Animal , Osteoartrite/veterinária , Animais de Estimação/psicologia , Adulto , Idoso , Animais , Cães , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Limitação da Mobilidade , Osteoartrite/economia , Pesquisa Qualitativa , Qualidade de Vida , Reino Unido
19.
BMC Psychiatry ; 20(1): 435, 2020 09 04.
Artigo em Inglês | MEDLINE | ID: mdl-32887576

RESUMO

BACKGROUND: Caring for a person with Alzheimer's disease (AD) is associated with significant mental burden e.g., depression and anxiety, and difficulties with social, familial, and professional functioning. To date, few studies have examined variables which would allow for a comprehensive and detailed study of the relationship between personal resources and caregiver health status, with a majority of studies focusing on factors that contribute to increased caregiver's burden. Moreover, the available evidence fails to address differences in the functioning of formal and informal carers. Paying proper attention to the problems of nursing home staff can help identify important risk factors. Therefore, this study compared mental health problems in informal and formal caregivers and examined the relationship between mental resources and mental health problems in both groups of caregivers. METHODS: This cross-sectional study examined 100 formal (n = 50) and informal (n = 50) caregivers of AD patients. Personal resources were measured with the Social Support Questionnaire (SSQ), the Generalized Self-Efficacy Scale (GSES), and the Sense of Coherence Questionnaire (SCQ), while mental health was assessed with the Depression Assessment Questionnaire (DAQ) and the General Health Questionnaire (GHQ). Multivariate stepwise regression was performed separately for both investigated groups. RESULTS: There were no significant differences between informal and formal caregivers in terms of psychological variables, i.e., sense of coherence, social support, self-efficacy, or mental health problems. In contrast, there were different significant predictors of mental health problems in both groups. Comprehensibility (SCQ) was a significant predictor of mental health problems measured by DAQ and self-efficacy (GSES) was a significant predictor of mental health problems measured by GHQ in informal caregivers. For formal caregivers, emotional support (SSQ) and comprehensibility (SCQ) were significant predictors of mental health problems measured by DAQ, while tangible support (SSQ) and meaningfulness (SCQ) were significant predictors of mental health problems measured by GHQ. CONCLUSIONS: Personal resources are significant predictors of mental health outcomes in caregivers of AD patients. Preventive actions should therefore include assessment of factors affecting caregivers' mental health in order to provide them with necessary care and create appropriate support groups.


Assuntos
Doença de Alzheimer , Cuidadores , Estudos Transversais , Humanos , Saúde Mental , Apoio Social
20.
Int J Nurs Pract ; 26(3): e12811, 2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-31981299

RESUMO

AIM: To identify the factors pertaining to the quality of life (QOL) among the mothers of patients with cerebral palsy. METHODS: In this cross-sectional study, 203 mothers of children with cerebral palsy were selected using convenience sampling. The World Health Organization's Quality of Life Questionnaire (WHOQOL-BREF), the Beck Depression Inventory, the Caregiver Difficulties Scale, Fatigue Severity Scale, and a demographic information questionnaire were administered to these caregivers. Hierarchical multiple linear regression analysis was used to detect the factors associated with QOL. RESULTS: Moderate to high significant negative correlations were observed between all WHOQOL-BREF domains and the other measures. The demographic/clinical variables were controlled, and hierarchical multiple linear regression analysis was run. The results indicated that depression, the burden of care, fatigue, and the type of cerebral palsy could significantly predict QOL in these mothers. Furthermore, QOL was lower in the mothers of children with tetraplegia than those of children with other types of disabilities (P < .05). CONCLUSION: QOL of mothers of children with cerebral palsy is negatively impacted by various factors such as burden of care, fatigue, and psychological symptoms. Thus, a holistic approach, including training (carrying, positioning, feeding, and how to manage the self-care of children) and psychological interventions, is required to improve QOL among this population.


Assuntos
Paralisia Cerebral/psicologia , Mães/psicologia , Qualidade de Vida/psicologia , Adulto , Cuidadores/psicologia , Paralisia Cerebral/complicações , Criança , Estudos Transversais , Demografia , Depressão , Transtorno Depressivo/complicações , Pessoas com Deficiência , Gerenciamento Clínico , Fadiga , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Escalas de Graduação Psiquiátrica , Autocuidado , Inquéritos e Questionários
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