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1.
Rev Gaucha Enferm ; 43: e20210038, 2022.
Artigo em Inglês, Português | MEDLINE | ID: mdl-35920476

RESUMO

OBJECTIVE: To build a theoretical model that represents the experience of family caregivers of elderly people during the COVID-19 pandemic. METHOD: Qualitative study that used the Grounded Theory as a methodology, carried out in Minas Gerais State in August 2020. 16 caregivers were interviewed. RESULTS: Uncomfortable emotions emerged and drove the caregivers' actions to: adopt preventive measures to protect the elderly from contracting the coronavirus; guarantee their healthcare; and make them aware of the pandemic. However, when these emotions manifested in an exacerbated manner, they needed to be alleviated so that they could adopt such initiatives. CONCLUSION: The emotions felt by caregivers can compromise their health and quality of life. Therefore, health professionals need to create strategies to ensure that they are well assisted, enabling care through telehealth. Guidance on the pandemic for caregivers could reflect better care for the elderly people.


Assuntos
COVID-19 , Cuidadores , Idoso , COVID-19/epidemiologia , Cuidadores/psicologia , Família/psicologia , Humanos , Pandemias , Pesquisa Qualitativa , Qualidade de Vida
2.
J Gerontol Nurs ; 48(8): 33-41, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-35914077

RESUMO

Family members often serve as primary caregivers to their parents and relatives. Information and communication technology (ICT) plays an important role in facilitating this caregiving role through using Internet of Things (IoTs) caregiving services. However, there is limited evidence regarding factors influencing caregivers' acceptance of new technologies. The current study investigated factors affecting caregivers' intentions to use ICT-based IoTs. Chi-square test was used to contrast differences in distributions between categorical variables. Binary logistic regression was performed to identify factors associated with increased intention to use ICT-based IoTs. Male caregivers showed increased intentions of using these products and considered the psychological burden as well as the diverse factors associated with adopting IoTs. On the other hand, female caregivers considered relieving their care burdens and social influences. As such, findings indicated that female caregivers demonstrated increased intention, which is associated with their care burdens, and relieving a similar experience would be a significant motivation. Further studies are needed not only for specific measures to reduce psychological burden but also for physical burden. Marketing strategies for spreading awareness of IoT technologies require more investment and initiatives. [Journal of Gerontological Nursing, 48(8), 33-41.].


Assuntos
Cuidadores , Tecnologia Digital , Idoso , Cuidadores/psicologia , Comunicação , Família/psicologia , Feminino , Humanos , Masculino , Apoio Social
3.
Perm J ; 26(2): 118-125, 2022 Jun 29.
Artigo em Inglês | MEDLINE | ID: mdl-35933668

RESUMO

Introduction Although cancer most directly affects the patient, its impact is also widely recognized to extend to those who are caring for the patient. Cancer patient caregivers endure psychological distress, have high levels of depression, and report isolation and strain. Research on targeted caregiver interventions is limited. This case report examines the use of health and wellness coaching (HWC) with a caregiver of a patient with neuroendocrine tumors, a rare, insidious type of cancer. Case Presentation We present the first known case report on using HWC with a 44-year-old woman adult cancer patient caregiver who was caring for a patient with neuroendocrine tumors. The patient had a chronically elevated body mass index, cholesterol, and stage 2 hypertension. Her primary care physician had prescribed weight loss medication (naltrexone/bupropion), which the patient hesitated to take and wanted to try HWC instead. The 10-session intervention targeted multiple components of health, including blood pressure, body mass index, cholesterol, weight loss, stress management, relationship success, and vocational progress. Outcomes were followed over a 1-year period. Conclusion This case demonstrates multiple unique aspects of the HWC process that support successful, sustainable behavioral change. The case patient's success suggests HWC may be effective in supporting beneficial physical and psychosocial outcomes with an adult cancer caregiver and should be considered a viable option for promoting health in caregivers.


Assuntos
Tutoria , Tumores Neuroendócrinos , Adulto , Cuidadores/psicologia , Feminino , Pessoal de Saúde , Humanos , Estresse Psicológico/psicologia , Estresse Psicológico/terapia , Redução de Peso
4.
J Cardiovasc Nurs ; 37(5): E160-E168, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35952314

RESUMO

BACKGROUND: Heart failure (HF) management can be improved by involving framily (family and friends) who provide valuable support. Less is known about how dyadic interactions or interactions between dyads and their extended care networks positively impact life with HF. OBJECTIVES: This study aimed to understand the positive behavioral, cognitive, and social factors through which patient-framily dyads manage health together. METHODS: Heart failure patient-framily dyads were recruited through Stanford heart failure clinics. Participants completed a 45-minute semistructured interview that elicited their experiences with managing HF. Interviews were audio recorded, transcribed for analysis, and independently coded by 2 team members using thematic analyses. RESULTS: Seventeen dyads (n = 34) participated in the study; 47% of patients and 78% of framily were women. Mean (SD) age of patients was 66 (14) years, and mean (SD) age of framily caregivers was 59 (12.3) years. Three themes showcased the positive contributions of dyadic HF management: (1) management of HF was perceived as successful when individuals in a dyad both received support from a shared care network; (2) when strength of the interpersonal relationship and love were the main motivators for care, dyads reported a positive outlook on quality of life with HF; and (3) the framily caregivers' own health conditions affected the dyadic relationship and perceived success with HF management. CONCLUSIONS: Social support by an external network and mutual support within a patient-framily dyad both create an environment of optimism and effective coping, making successful HF management possible. A dyad's success with these factors may result in better condition management and perceived quality of life.


Assuntos
Insuficiência Cardíaca , Autocuidado , Idoso , Cuidadores/psicologia , Feminino , Insuficiência Cardíaca/psicologia , Insuficiência Cardíaca/terapia , Humanos , Relações Interpessoais , Masculino , Pessoa de Meia-Idade , Qualidade de Vida
5.
Pan Afr Med J ; 42: 64, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35949477

RESUMO

Introduction: caring for elderly persons is challenging for caregivers due to elderly persons´ increased dependence and reduced physical strength. This study assessed the burden of care experienced by caregivers of elderly persons in family settings. Methods: this cross-sectional study used a multistage cluster sampling technique to select 1,119 caregivers of elderly persons aged 18-59 years from one rural and one urban local government area in Oyo State, Nigeria. Interviewer-administered questionnaires collected information on caregiving arrangements and burden of care experienced (determined using the modified short version of the Zarit Burden Interview). Results: caregivers´ mean age was 38.6 ± 8.7 years with 50.2% aged ≥40 years. There were more females (59.8%) than males (40.2%) and 78.4% were married. Only 47.8% were primary caregivers, 54% cared for their parents and 2% cared for non-relatives. Prior to their caregiving, 81% reported good relationships with the elderly. Although 80.3% of the elderly were reported to be fully independent for activities of daily living, 74.0% of the caregivers experienced burden of care with 28.2% reporting severe burden. The odds of burden of care were 10 times higher among rural than urban caregivers (OR=10.09, 95%CI=5.99-17.01); eight times higher among those with poor than those with good mental health status (OR=7.90, 95%CI=4.60-13.57) three times higher among those with dependent than independent elders (OR=2.74, 95%CI=1.68-4.47). Conclusion: experience of burden of care was high among caregivers in the rural area and those with poor mental health. Community-oriented support including daycare centres and old people´s homes will provide relief to caregivers.


Assuntos
Cuidadores , Fragilidade , Atividades Cotidianas , Adulto , Idoso , Cuidadores/psicologia , Efeitos Psicossociais da Doença , Estudos Transversais , Família/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Nigéria , Inquéritos e Questionários
6.
BMJ Open ; 12(8): e056210, 2022 08 02.
Artigo em Inglês | MEDLINE | ID: mdl-35918120

RESUMO

OBJECTIVES: In this paper, we explore the exposure to risk and experiences of people with disability and carers during a flooding event and the subsequent mental health impacts. DESIGN: A cross-sectional survey between September and November 2017. Binary logistic regression models were used to investigate associations between the mental health of people with disability and carers and their exposure to the flood. Inductive content analysis was used to analyse qualitative data. SETTING: Flood-affected communities in the rural area of Northern Rivers, New South Wales, Australia, 6 months after river flooding in 2017. PARTICIPANTS: People over 16 years and a resident in the Northern Rivers at the time of the flood were invited to participate. Using a purposive, snowballing sampling technique participants were drawn from a wide range of socioeconomic backgrounds and had experienced different degrees of flood exposure. RESULTS: Of 2252 respondents, there were 164 people with disability and 91 carers. Both groups had increased odds of having their home flooded (people with a disability: OR 2.41 95% CI 1.71 to 3.39; carers: OR 1.76 95% CI 1.10 to 2.84). On evacuation, respondents reported inaccessible, conflicting and confusing information regarding flood warnings. Essential services such as healthcare and social services were disrupted (people with a disability: OR 3.98 95% CI 2.82 to 5.60; carers 2.17 95% CI 1.33 to 3.54) and access to safe and mould free housing post flood event was limited. After taking sociodemographic factors into account, respondents with a disability and carers had greater odds of probable post-traumatic stress disorder compared with other respondents (people with a disability: 3.32 95% CI 2.22 to 4.96; carers: 1.87 95% CI 1.10 to 3.19). CONCLUSION: Our findings show the profound impact and systemic neglect experienced by people with disability and carers during and after the 2017 flood event in the Northern Rivers. As people with disability will take longer to recover, they will require longer-term tailored supports and purposeful inclusion in flood preparedness and recovery efforts.


Assuntos
Pessoas com Deficiência , Inundações , Austrália , Cuidadores/psicologia , Estudos Transversais , Humanos , Rios
7.
BMC Geriatr ; 22(1): 662, 2022 08 12.
Artigo em Inglês | MEDLINE | ID: mdl-35962356

RESUMO

BACKGROUND: Family and friend caregivers play significant roles in advocating for and ensuring quality health and social care of residents in Assisted Living (AL) homes. However, little is known about how the COVID-19 pandemic and related visitor restrictions affected their health and mental well-being. We examined the prevalence and correlates of anxiety and depressive symptoms among caregivers of AL residents during the initial wave of COVID-19 in two Canadian provinces. METHODS: A cross-sectional web-based survey was conducted among family/friend caregivers of AL residents in Alberta and British Columbia (Oct 28, 2020-Mar 31, 2021) to collect data on their sociodemographic, health and caregiving characteristics, as well as concerns about residents' health and social care before and during the first wave of the pandemic. A clinically significant anxiety disorder and depressive symptoms were assessed with the GAD-7 and CES-D10 instruments, respectively. Separate multivariable (modified) Poisson regression models identified caregiver correlates of each mental health condition. RESULTS: Among the 673 caregivers completing the survey (81% for Alberta residents), most were women (77%), white (90%) and aged ≥ 55 years (81%). Clinically significant anxiety and depression were present in 28.6% and 38.8% of caregivers respectively. Both personal stressors (comorbidity level, income reduction, low social support) and caregiving stressors exacerbated by the pandemic were independently associated with caregiver anxiety and depression. The latter included increased concern about the care recipients' depression (adjusted risk ratio [adjRR] = 1.84, 95% confidence interval [CI] 1.19-2.85 for caregiver anxiety and adjRR = 1.75, 95% CI 1.26-2.44 for caregiver depressive symptoms) and reported intention to withdraw the resident from AL because of COVID-19 (adjRR = 1.24, 95%CI 0.95-1.63 for caregiver anxiety and adjRR = 1.37, 95%CI 1.13-1.67 for caregiver depressive symptoms). CONCLUSIONS: Caregivers of residents in AL homes reported significant personal and caregiving-related stressors during the initial wave of COVID-19 that were independently associated with an increased likelihood of experiencing clinically significant anxiety and depressive symptoms. Healthcare providers and AL staff should be aware of the prevalence and varied correlates of caregivers' mental health during public health crises so that appropriate screening and support may identified and implemented.


Assuntos
COVID-19 , Cuidadores , Alberta , Ansiedade/diagnóstico , Ansiedade/epidemiologia , Transtornos de Ansiedade/epidemiologia , COVID-19/epidemiologia , Cuidadores/psicologia , Estudos Transversais , Depressão/diagnóstico , Depressão/epidemiologia , Feminino , Humanos , Masculino , Pandemias , Prevalência
8.
BMC Med Inform Decis Mak ; 22(1): 215, 2022 08 13.
Artigo em Inglês | MEDLINE | ID: mdl-35964116

RESUMO

BACKGROUND: Caregivers of children undergoing growth hormone treatment often face stress and stigma. In this regard, family-centered approaches are increasingly considered, wherein caregivers' mental wellbeing is taken into account to optimize children's health-related outcomes and behaviors (e.g., treatment adherence). Here, mindfulness and parenting-based programs have been developed to support the mental wellbeing of caregivers and, in turn, promote richer interactions with the children. Nevertheless, this type of program can face drawbacks, such as the scheduling and availability of family members. Recent digital health (DH) solutions (e.g., mobile apps) are showing promising advantages as self-management support tools for improving wellbeing and behaviors related to the treatments. Although, further evidence is necessary in the field of Growth Hormone Treatment (GHt). Accordingly, this study aims to examine the usability of a mobile DH solution and the feasibility of a DH intervention designed to promote emotional and mental wellbeing of caregivers of children undergoing GHt. METHODS: This is a prospective mixed-methods (qualitative-quantitative) exploratory study composed of two sub-studies, including caregivers of children undergoing GHt. Sub-study one (SS1; n = 10) focuses on the usability of the DH solution (detecting potential barriers and facilitators) and an ad hoc semi-structured interview will be administered to the caregivers after using the DH solution for one month. Sub-study two (SS2; n = 55) aims to evaluate the feasibility of the DH intervention on caregivers' perceived distress, positive affectivity, mental wellbeing, self-efficacy, together with the children's quality of life and treatment adherence. All these parameters will be assessed via quantitative methods before and after 3-months of the DH intervention. Usability and engagement will also be assessed during and at the end of the study. RESULTS: It is expected that significant amounts of data will be captured with regards of the feasibility of the DH solution. DISCUSSION: The manuscript provides a complete protocol for a study that will include qualitative and quantitative information about, on one hand, the user-friendliness of the DH solution, and on the other, the effects on caregivers' emotional, as well as, behavioral parameters in terms of the usability and engagement to the DH solution. The findings will contribute to the evidence planning process for the future adoption of digital health solutions for caregiver support and better health-related outcomes. Trial registration ClinicalTrials.gov, ID: NCT04812665.


Assuntos
Cuidadores , Autogestão , Cuidadores/psicologia , Criança , Estudos de Viabilidade , Hormônio do Crescimento , Humanos , Estudos Prospectivos , Qualidade de Vida/psicologia
9.
BMC Geriatr ; 22(1): 671, 2022 Aug 15.
Artigo em Inglês | MEDLINE | ID: mdl-35971073

RESUMO

BACKGROUND: A prolonged COVID-19 pandemic could exacerbate the risk of infection and undesirable effects associated with infection control measures of older people with dementia (PWD), and the care burden of families. In this study, we examined the efficacy of care manager-led information provision and practical support for families of older PWD who need care, regarding appropriate infection prevention, prevention of deterioration of cognitive and physical functions, and preparedness in cases of infection spread or infection during the pandemic. METHODS: Fifty-three family members (aged ≥20 years) who were primary caregivers living with older PWD using public long-term care services were enrolled in an one-month randomized controlled trial. This duration was set based on behavior modification theory and with consideration of ethical issue that the most vulnerable people not benefiting from the intervention. The intervention group (IG) received care manager-led information provision and practical support, and the control group (CG) received usual care. Care burden (primary outcome) was measured using the Zarit Caregiver Burden Interview, and secondary outcomes were analyzed using Patient Health Questionnaire-9 (PHQ9), the Fear of COVID-19 Scale, and salivary α-amylase activity. Data were collected at baseline and after 1 month. Multiple regression analysis was conducted to examine the efficacy of the intervention. The participants evaluated the care managers' support. RESULTS: The participants were randomly divided into IG (n = 27) and CG (n = 26) groups. After the intervention, compared with the CG, there was a decrease in PHQ-9 (ß = -.202, p = 0.044) and α-amylase activity in saliva (ß = -.265, p = 0.050) in IG. IG also showed an increased fear of COVID-19 after the intervention (ß = .261, p = 0.003). With the care managers' support, 57.2% of the participants felt secure in their daily lives and 53.1% agreed that they were able to practice infection prevention suitable for older PWD. CONCLUSIONS: Our findings suggest that the care manager-led intervention may be useful for families of older PWD to enhance behavioral changes in preventing COVID-19 infection and improve their psychological outcomes in the COVID-19 era. TRIAL REGISTRATION: This study was registered on April 2, 2021 (No. UMIN000043820).


Assuntos
COVID-19 , Demência , Idoso , COVID-19/epidemiologia , Cuidadores/psicologia , Demência/epidemiologia , Demência/psicologia , Demência/terapia , Família , Humanos , Pandemias , Qualidade de Vida
10.
BMC Psychol ; 10(1): 202, 2022 Aug 15.
Artigo em Inglês | MEDLINE | ID: mdl-35971169

RESUMO

BACKGROUND: Spinal cord injury (SCI) is one of the most serious types of physical trauma and has become a major life-threatening condition in the recent decade. It is essential that the life perception and experiences of patients with SCI be studied and evaluated in different cultural contexts so that their needs and the challenges they face can be properly determined. The present study aims to explore the how patients with SCI in the south of Iran perceive facing life's challenges. METHODS: The present study is a qualitative research with a descriptive phenomenological design. Participants were identified through purposive sampling of patients with spinal cord injury admitted to two state hospitals affiliated with a university of medical sciences in western Iran. The researchers collected data using semi-structured, in-depth interviews with 25 SCI patients conducted between August and October 2021. Data was analyzed according to Colaizzi's method using MAXQDA v. 2007. RESULTS: Analysis of the data led to the emergence of three themes and nine sub-themes. The three main themes were emotional shock (crisis making and mental rumination, persistent depressive disorder, pitying behaviors, fear of the future), loss of dignity (poor self- care, sexual dysfunction, loss of job and educational status), and lack of effective support (lack of financial institutions and sponsors, lack of social support). CONCLUSION: Patients with spinal cord injuries face various issues in their care and social lives. Attention to their psycho-emotional needs along with comprehensive health support play key roles in generating a sense of self efficacy and promoting the mental well-being and dignity of patients with spinal cord injuries. Accordingly, healthcare administrators and caregivers are recommended to provide more comprehensive health support to SCI patients to meet their needs more effectively.


Assuntos
Traumatismos da Medula Espinal , Cuidadores/psicologia , Humanos , Irã (Geográfico) , Percepção , Pesquisa Qualitativa , Traumatismos da Medula Espinal/psicologia , Traumatismos da Medula Espinal/terapia
11.
Front Public Health ; 10: 921858, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35968470

RESUMO

Background: Alzheimer's disease (AD) is a progressive and debilitating disorder that strongly affects people with AD and their families. The changes in signs of the disease and its treatment lead to many challenges in people with AD that affect the performance and the ability of caregivers, their social life, and physical, emotional, and psychological aspects of caregivers' health. Therefore, this study was designed to develop and validate the Care Challenge Scale (CCS) for family caregivers of people with AD in the care context of Iran. Method: This is a cross-sectional study, and the primary scale was based on 14 semi-structured interviews with family caregivers of Iranian people with AD. In the next phase, the psychometric features were assessed, including the face validity (qualitative and quantitative), content validity (qualitative and quantitative), item analysis, structural validity (exploratory and confirmatory factors), and construct validity (convergent and discriminant validity). Finally, the reliability was assessed using internal consistency (Cronbach's alpha, McDonald's omega coefficient, and the average inter-item correlation), stability (intraclass correlation coefficient), and absolute reliability. Results: Totally, 435 Iranian family caregivers filled out online questionnaires, with a mean age of 50.26(±13.24) years. Based on the results of the qualitative phase, an item pool was generated with 389 items, and after deleting overlapping and unrelated items, the CCS with 14 items was created. The results of the quantitative phase showed that the CCS consists of two factors with 10 items each, which are named effective role-play challenge and lack of social-financial support, and they explained 42.23% of the total variance. Furthermore, the results of confirmatory factor analysis showed a good fitness of the scale structure model, and it had convergent and discriminant validity. The reliability indexes showed this scale has internal consistency and stability. Conclusion: The most care challenge among Iranian family caregivers of people with AD is effective role-play challenges and lack of social-financial support. The scale as designed has good validity, internal consistency, and stability that can be used by therapists, nurses, and researchers for the assessment of the challenges of this population.


Assuntos
Doença de Alzheimer , Cuidadores , Cuidadores/psicologia , Estudos Transversais , Humanos , Irã (Geográfico) , Pessoa de Meia-Idade , Reprodutibilidade dos Testes
12.
Artigo em Inglês | MEDLINE | ID: mdl-35932155

RESUMO

BACKGROUND: A sense of coherence (SOC) could help us better understand why there are individuals who cope better than others in similar situations. The study aimed to assess the effect of SOC on the course of burden reports in relatives of persons with dementia. METHODS: This was a prospective cohort study of 156 dementia carers. The SOC was assessed by the Orientation to Life Questionnaire (OLQ-13), burden by Burden Interview, and personal and contextual characteristics were collected via ad hoc questions. The main dementia symptoms, including functional difficulties (Disability Assessment for Dementia), neuropsychiatric symptoms (Neuropsychiatric Inventory), and cognitive impairment (Mini-Mental State Examination), were also assessed. A general linear model was adjusted to determine the effect of SOC and other covariates on burden throughout the follow-up. Burden differences between baseline and 12 and 24 months were analysed, and the baseline OLQ-13 score was grouped by quartiles. RESULTS: The global burden reported increased after 24 months (F = 9.98; df = 2; p < 0.001), but not equally for all carers; daughters reported the greatest increase. SOC, functional disability, and neuropsychiatric disorders showed a significant effect on burden, but time did not. Carers with higher SOC at baseline tend to remain with lower burden levels, whereas carers with low SOC reported higher burden at each visit. CONCLUSIONS: This study reports evidence of the effect of SOC on burden at baseline, 12 and 24 months of follow-up. Burden scores differ by carers' SOC; those with higher SOC showed lower burden levels, whereas the low-SOC group reported a greater burden at each visit.


Assuntos
Demência , Senso de Coerência , Adaptação Psicológica , Cuidadores/psicologia , Demência/psicologia , Humanos , Estudos Prospectivos
13.
BMC Palliat Care ; 21(1): 142, 2022 Aug 10.
Artigo em Inglês | MEDLINE | ID: mdl-35945558

RESUMO

BACKGROUND: Growing numbers of people with advanced illnesses who wish to die at home, a concurrent decline in the accessibility of professional home care, and policies aiming at prolonging work participation are increasing the reliance on family caregivers. This study aimed to describe trajectories in burden of working family caregivers who care for patients with a life-threatening illness, and identify factors in work and care that are related to changes in burden over time. METHODS: Semi-structured interviews were held in one to four rounds between July 2018 and November 2020 with 17 working family caregivers of patients with a life-threatening illness living at home. Transcripts were analysed as a single unit to create timelines per participant. Next, individual burden trajectories were created and grouped based on the course of burden over time. Factors related to changes in burden were analysed, as well as similarities and differences between the groups. RESULTS: It was common for family caregivers who combine work and end-of-life care to experience a burden. Two trajectories of caregiver burden were identified; caregivers with a persistent level of burden and caregivers with an increasing burden over time. Family caregivers with a persistent level of burden seemed to be at risk for burnout throughout the illness trajectory, but were often able to cope with the situation by making arrangements in care or work. Caregivers with an increasing burden were unable to make sufficient adjustments, which often resulted in burnout symptoms and sick leave. In both groups, burden was mostly related to aspects of the care situation. The emotional burden, a decreasing burden after death and a different view on the trajectory in hindsight proved to be important overarching themes. CONCLUSIONS: Providing care to a loved one nearing the end of life is often emotionally burdensome and intensive. To facilitate the combination of paid work and family care, and reduce the risk of burnout, more support is needed from employers and healthcare professionals during the illness trajectory and after death. Bereaved family caregivers also warrant more attention from their supervisors and occupational physicians in order to facilitate their return to work.


Assuntos
Cuidadores , Assistência Terminal , Adaptação Psicológica , Cuidadores/psicologia , Morte , Humanos , Pesquisa Qualitativa
14.
Artigo em Inglês | MEDLINE | ID: mdl-35954675

RESUMO

Regular exercise can be an effective health-promotion strategy to improve the physical and mental health of informal caregivers. A randomized controlled trial study was designed to evaluate the effects of a 9-month home-based exercise intervention on health-related quality of life (HRQoL) and physical fitness in female family caregivers of persons with dementia. Fifty-four female caregivers were randomly assigned to two groups for the 9-month study period. Participants of the intervention group (n = 25) performed two 60-min exercise sessions per week at home, under the direct supervision of a personal trainer. Participants in the control group (n = 23) continued their habitual leisure-time activities. HRQoL was assessed using the SF-36 questionnaire, and physical fitness was measured using a battery of appropriate fitness tests. After 9 months, significant improvements were observed in general health, social function, vitality, hand and leg strength, trunk flexor and extensor endurance, and aerobic endurance in the intervention group. The present intervention was highly adherent and safe for the participants, with no dropout related to the intervention. As a home-based exercise program conducted by a personal trainer face to face, it can be considered as a feasible and appropriate method to improve the most deficient HRQoL dimensions and contribute to preserving the functional capacity of female family caregivers of persons with dementia.


Assuntos
Cuidadores , Demência , Cuidadores/psicologia , Terapia por Exercício/métodos , Feminino , Humanos , Aptidão Física , Qualidade de Vida/psicologia
15.
Artigo em Inglês | MEDLINE | ID: mdl-35897338

RESUMO

There is a known end-of-life related disparity among Latino individuals, and there is a need to develop culturally sensitive interventions to help patients and caregivers cope with advanced cancer. Latino patients and caregivers coping with advanced cancer were asked to list important end-of-life topics to culturally inform a psychosocial intervention adaptation process. A qualitative study was conducted, and semi-structured interviews were performed, audio-recorded, and transcribed. Recordings and transcriptions were reviewed and analyzed using thematic content coding. The semi-structured interview described and demonstrated intervention components and elicited feedback about each. Free listing method was used to assess important topics among Latino advanced cancer patients (n = 14; stage III and IV) and caregivers. Patients and caregivers were given a list of 15 topics and asked which topics they deemed important to integrate into the intervention. Overall, more than half of the participants considered it important to include 13 of the 15 topics related to daily activities (eight subcategories), psychosocial support (three subcategories), discussing diagnosis and support (three subcategories), and financial difficulties (one subcategory). Patient-caregivers reported importance in most end-of-life topics. Future research and intervention development should include topics related to psychosocial support, daily activities, discussing diagnosis and support, and financial difficulties.


Assuntos
Cuidadores , Neoplasias , Adaptação Psicológica , Cuidadores/psicologia , Morte , Hispânico ou Latino , Humanos , Neoplasias/terapia , Pesquisa Qualitativa
16.
Artigo em Inglês | MEDLINE | ID: mdl-35897348

RESUMO

OBJECTIVE: This study explored the perspectives of being in a youth group home during the COVID-19 pandemic from youth residents, staff, and caregivers. METHODS: We conducted semi-structured interviews with 9 youth residents, 8 group home staff members, and 13 caregivers of residents. All participants were connected to the group home before and during the COVID-19 pandemic. Thematic analysis was used to identify lived experience themes. RESULTS: Two overarching themes were identified among the youth residents-Safety response to COVID-19 and Socialization changes due to COVID-along with three subthemes: Structure leading to separation, Support and belonging amid a pandemic, and Competency. Three overarching themes were identified among the group home staff: Safety response to COVID-19, Increased responsibility, and Mental health changes because of a pandemic. Finally, three overarching themes were identified among the guardians of youth residents: Safety response to COVID-19, Belief in a mental health impact on the child, and Communication during a pandemic. Conclusions: The findings provide the experiences among three group home stakeholders. Overall, they demonstrated resilience in a setting and time when resilience was essential. Finally, the findings offer insight on the basis of which group homes/organizations can prepare for crises of a great magnitude, including vital communication elements.


Assuntos
COVID-19 , Adolescente , COVID-19/epidemiologia , Cuidadores/psicologia , Criança , Lares para Grupos , Humanos , Casas de Saúde , Pandemias
17.
J Am Board Fam Med ; 35(4): 814-820, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35896465

RESUMO

BACKGROUND: Youth are increasingly upholding significant caregiving responsibilities. These caregiving responsibilities can have emotional, educational, and professional impacts on youth and young adults. And yet, policies and resources focus on adult caregivers and are limited in supporting young caregivers. The purpose of this study was to describe the different types of support that youth identify as being important to prepare to take care of an adult relative. METHODS: We conducted an open-ended, text-message based poll of youth ages 14 to 24 in August 2020. We conducted a content analysis to categorize and describe the different types of support respondents identified in their responses. We compared types of support identified by age-group, gender identity, and prior caregiving experience. RESULTS: Most respondents (42.2%) identified education (eg, skills training) as being an important resource. Other types of support reported included financial support (eg, assistive programs), workplace policies (eg, paid leave), mental health support, and professional support. DISCUSSION: Policy makers should extend existing policies (eg, Family and Medical Leave Act) to include and consider the circumstances of youth and young adults. Policies enabling young caregivers to actively participate in their adult relative's health care visits could be critical to preparing youth for the skills required and the physical and emotional demands associated with caregiving. Coordinated efforts between health and education systems could support youth in learning information about caregiving, medical decision making, and medical tasks.


Assuntos
Cuidadores , Identidade de Gênero , Adolescente , Adulto , Cuidadores/psicologia , Feminino , Humanos , Masculino , Políticas , Salários e Benefícios , Local de Trabalho/psicologia , Adulto Jovem
18.
PLoS One ; 17(7): e0271617, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35839232

RESUMO

BACKGROUND: Incontinence is a complex health and social issue, which involves the involuntary loss of urine or faeces or both. Individuals with disabilities are particularly vulnerable to incontinence. The management of incontinence has largely been overlooked in low and middle-income settings (LMICs). This study aimed to explore the incontinence management strategies employed by disabled people with severe incontinence and their caregivers in Sindh Province, Pakistan. METHODS: Incontinence management was explored through in-depth interviews with people with incontinence (PWI) and their caregivers, photovoice, and a market survey and product attribute assessment. Data was analysed thematically through inductive coding and evaluated against existing disability and caregiver frameworks. RESULTS: Incontinence management affected all aspects of daily life for PWI and caregivers. Effective management of incontinence was prioritised because caregivers viewed it to be part of their familial duty and a requirement for the household to remain pure in the eyes of God. Coping strategies included strict adherence to routines, reducing food and drink intake, creative uses of locally available natural resources, and a heavy reliance on soap and water for maintaining hygiene. Products such as adult diapers were largely unavailable, costly and were not deemed suitable for regular use. There were no social or medical interventions in the region to support incontinence management. The main impacts of incontinence on the household were social isolation, stigma, role shifts within the family, the development of physical ailments among caregivers, and decreased income. CONCLUSION: The complex health, psychological, social, economic, and cultural impacts of incontinence are exacerbated in LMICs due a lack of recognition of the condition, the absence of social or medical interventions and limited access to basic WASH infrastructure, and assistive devices or products. Appropriate solutions need to be developed in partnership with PWI and caregivers and need to be contextualised, affordable and sustainable.


Assuntos
Cuidadores , Incontinência Urinária , Adulto , Cuidadores/psicologia , Humanos , Renda , Paquistão , Pesquisa Qualitativa , Incontinência Urinária/psicologia , Incontinência Urinária/terapia
19.
PLoS One ; 17(7): e0271480, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35853013

RESUMO

INTRODUCTION: Parkinson's disease is a motor disease, the second most common neurodegenerative disorder with cardinal symptoms including bradykinesia, rigidity, and rest tremor accompanied by cognitive difficulties. The caregivers play a crucial role for individuals with Parkinson's disease; however, many of them may suffer from high caregiver burden and mental health deterioration. This protocol of a systematic review presents a methodology of the review about the impact of cognitive impairment of individuals with Parkinson's disease on their caregivers' mental health. MATERIAL AND METHODS: Research will be identified by combining electronic databases searching and hand searching. The following databases will be included: Medline, PsycInfo, Web of Sciences, Cochrane, CINAHL, Embase and Scopus. The inclusion and exclusion criteria followed to PECOS model. The population of informal caregivers is defined as family members providing care on a patient with Parkinson's disease. Exposure is linked with the evaluation of a cognitive functioning and outcome is defined as mental health among caregivers of individuals with Parkinson's disease. We will include two types of studies: observational and intervention. Both, screening and eligibility will be done by two independent reviewers. Study quality will be assessed by two authors independently. Data will be extracted by two reviewers independently and will follow a pre-pilot extraction form. Any discrepancies will be resolved by discussion or/and consultation with another reviewer. The synthesis without meta-analysis (SWiM) guidelines will be used to report on included studies data. The metanalysis with usage the statistical software R version 4.1.2 (2021-11-01) "Bird Hippie" and R metaphor package 3.0-2 of will be conducted if possible. DISCUSSION: The goal of this systematic review is to present the association between caregivers' mental health problems and their proteges' cognitive impairment. It will enable to identify the gaps in literature and its methodology giving the suggestions for further research. PROTOCOL REGISTRATION: Protocol registration number in PROSPERO: CRD42022296670.


Assuntos
Disfunção Cognitiva , Doença de Parkinson , Cuidadores/psicologia , Cognição , Disfunção Cognitiva/complicações , Humanos , Saúde Mental , Doença de Parkinson/complicações , Doença de Parkinson/psicologia , Revisões Sistemáticas como Assunto
20.
Hu Li Za Zhi ; 69(4): 4-5, 2022 Aug.
Artigo em Chinês | MEDLINE | ID: mdl-35893330

RESUMO

Cancer, the primary cause of death in Taiwan for 40 years, remains a disease that cannot be completely controlled by modern medicine. Although medical techniques are improving, involving family caregivers in the treatment of patients with cancer is very important to improving treatment outcomes. Family caregivers participate in the treatment process and help ensure treatment compliance and care continuity for patients. Cancer represents a major crisis not only for patients but also for their primary family caregivers. Family members often serve as informal caregivers to patients with cancer while also dealing with the related medical costs and physical and psychological burdens (Seo & Park, 2019). Providing care and support for family members is an extraordinary challenge during the treatment journey. Many family caregivers ignore their own needs and emotions, and focus their full attention on their beloved family members with cancer. However, this situation may impact their health-related quality of life (Abbasi et al., 2020). Cancer patients and family caregivers often have unmet needs related to cancer care, psychosocial health, daily activities, social life, and cancer-treatment knowledge (Tang, 2019; Wang et al., 2018). The important role shouldered by family caregivers is significantly related to their unmet needs and loadings, which may negatively impact their quality of life and care-delivery ability (Abbasi et al., 2020; Mirsoleymani et al., 2017). Therefore, healthcare providers should intervene to reduce both the burden on family caregivers and the indirect, negative impact on the health-related quality of life of care recipients. In light of the above, we have invited four experts in cancer nursing to share articles in this issue on patients and their family caregivers dealing with pancreatic, pediatric, and gynecological cancers as well as on the topic of cancer immunotherapy. We hope professional nurses and medical health caregivers obtain new and useful information from these articles and apply it in clinical practice.


Assuntos
Cuidadores , Neoplasias , Cuidadores/psicologia , Criança , Família , Humanos , Neoplasias/terapia , Enfermagem Oncológica , Qualidade de Vida/psicologia
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