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BACKGROUND: The ageing population and the rise of persons with dementia (PWD) living at home have increased the need for support by family caregivers (FC). Research suggests that most FCs are unprepared for the complex role of informal caregiving. The use of mobile applications (apps) provide a cost-effective and efficient opportunity for community-based social care professionals to provide tailor-made support to FCs. The literature indicates that there are limited mobile apps available to meet the needs of the FCs to PWD living at home. The aim of this study was to explore how social care professionals and FCs to PWD living at home experience providing and receiving support through a tailor-made mobile app named STAV. METHODS: A qualitative descriptive design was applied. Data were collected through semi-structured interviews with 11 community-based social care professionals and 19 FCs of PWD living at home. The data were analyzed inductively using thematic analysis. RESULTS: The social care professionals and the FCs' experience of providing and receiving support through a mobile app was represented by the following themes: Accessibility to support - Bridging the gap, Engaging from a distance, and Limitations of the support. CONCLUSIONS: This study highlights the need for FCs to PWD to receive support that is tailor-made to their needs as caregivers. The findings from this study can help community-based social care providers plan and organize long-distance support for FCs to PWD living at home. The findings further support the use of a mobile app as a complement to traditional means of support for FCs to PWD which can facilitate their knowledge, awareness, and self-care management.
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Cuidadores , Demência , Aplicativos Móveis , Pesquisa Qualitativa , Humanos , Cuidadores/psicologia , Masculino , Feminino , Demência/psicologia , Demência/terapia , Idoso , Pessoa de Meia-Idade , Apoio Social , Adulto , Idoso de 80 Anos ou maisRESUMO
BACKGROUND: The majority of persons with dementia in Sweden reside in their own homes with support from family members. Approximately, 12% of persons with dementia have immigrant background. Within the next 20 years, the number of persons with dementia who are non-ethnic Swedes is said to double. Family caregivers with immigrant backgrounds are noted to receive less support in the community than ethnic Swedes and rate their health status lower than ethnic Swedish peers. The Swedish National Board of Health and Welfare have highlighted the importance of follow-up support for family caregivers with immigrant backgrounds as there is a recognized gap in research and available information tailored to meet the needs of this group. PURPOSE OF THE STUDY: The purpose of the study is to test effectiveness of an mHealth based intervention through which community social workers can improve caregiving competence of non-European immigrant family caregivers of people with dementia living at home in Sweden. The overarching aim is to reduce caregiver burden and depressive symptoms, and improve quality of life. METHODS: A randomized controlled trial (RCT) including wait list control group will be performed consisting of an intervention group (A, n = 44) and a wait list control group (B, n = 44), totaling a sample size of 88. On completion of the 10-weeks long intervention in the intervention group, the intervention will be delivered to group B. Effect of the intervention will be analyzed between and within groups over time. The content of the educational component of the intervention is inspired by the iSupport manual developed by the World Health Organization. The contents, in the form of a booklet, aims to equip the family caregivers with structured information on understanding dementia as a condition and its management at home, including self-care guidance designed specifically for family caregivers themselves. DISCUSSION: Similar telephone-delivered intervention studies targeted for family caregivers to persons with dementia are ongoing in Malaysia and will start in India using the same booklet adapted to the local context. These studies will provide evidence on the effectiveness of using digital technologies to deliver support to those who may not be reached or adequately served by the traditional healthcare system. TRIAL REGISTRATION: ISRCTN registry, Registration number ISRCTN64235563.
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Cuidadores , Demência , Telemedicina , Humanos , Cuidadores/psicologia , Suécia , Demência/terapia , Demência/psicologia , Emigrantes e Imigrantes/psicologia , Qualidade de Vida/psicologia , Feminino , Masculino , Assistentes Sociais/psicologia , IdosoRESUMO
BACKGROUND: The majority of persons with dementia (PWD) are mainly cared for by their family members in the home. Evidence is however scarce on family caregivers' psychosocial burden and quality of life in Asian countries including Malaysia. This study describes the baseline data of a telephone-delivered psychoeducational intervention study and examines the determinants of outcome measures (caregiver burden, depressive and anxiety symptoms, quality of life and caregiving self-efficacy) among Malaysian family caregivers to PWD. METHODS: This was a cross-sectional study originated from the baseline survey of a randomized control trial of 121 family caregivers recruited from lists of PWD who were registered at memory and psychiatry clinics in three tertiary care hospitals in Malaysia. The participants were assessed for caregiver burden by the Zarit Burden Interview, depressive and anxiety symptoms by the Hospital Anxiety and Depression Scale, quality of life by the Control, Autonomy, Self-Realization, and Pleasure Scale, and caregiving self-efficacy by the Revised Scale for Caregiving Self-Efficacy. RESULTS: Prevalence of caregiver burden was 69.4%, depressive symptoms 32.2% and anxiety symptoms 32.2%. Family caregivers to PWD having perceived peer support e.g., social/family/friend/significant other supports were less likely to report caregiver burden, depressive and anxiety symptoms, and more likely to report higher levels of quality of life and caregiving self-efficacy. Being married and PWD's ability to self-care were associated with lesser likelihood of experiencing caregiver burden, depressive and anxiety symptoms. The other determinants of greater probability of reporting better quality of life were caregivers' employment and having Islamic faith. Marital status (married), PWD's ability to self-care, spousal relationship with PWD and shared caregiving process were associated with higher likelihood of reporting caregiving self-efficacy. CONCLUSION: Caregiver burden, depressive and anxiety symptoms are prevalent in family caregivers to PWD in Malaysia. Social support and caregiving related factors influence family caregivers' quality of life and caregiving self-efficacy. Implementing psychoeducational intervention and support in the psychiatry and memory clinics may help improve the psychosocial burden, quality of life and caregiving self-efficacy in family caregivers of PWD. TRIAL REGISTRATION: ISRCTN14565552 (retrospectively registered).
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Cuidadores , Demência , Saúde Mental , Qualidade de Vida , Autoeficácia , Humanos , Qualidade de Vida/psicologia , Masculino , Cuidadores/psicologia , Feminino , Malásia/epidemiologia , Estudos Transversais , Demência/psicologia , Pessoa de Meia-Idade , Idoso , Sobrecarga do Cuidador/psicologia , Idoso de 80 Anos ou mais , Adulto , Efeitos Psicossociais da DoençaRESUMO
BACKGROUND: Response to COVID-19 pandemic in Bangladesh was led by the Government of Bangladesh aided by Non-Government Organisations (NGO) among others. The aim of the study was to explore the activities of such an NGO to understand the philosophy, aspiration and strategy to plan and implement an effective response to COVID-19 pandemic in Bangladesh. METHODS: A case study of a Bangladeshi NGO called SAJIDA Foundation (SF) is presented. From September to November 2021, using document review, field observation and in-depth interviews, four aspects of their COVID-19 pandemic related activities was explored - a) why and how SF initiated their COVID response; b) what adaptations were made to their usual programmes; c) how SF's response to COVID-19 were designed and what were the anticipated challenges including overcoming measures; and d) perception of the staff about SF's activities related to COVID-19. Fifteen in-depth interviews were conducted with three groups of SF staff: frontliners, managers and leaders. RESULT: The impact of COVID-19 has been beyond health emergencies and posed multidimensional challenges. SF took a two-pronged approach - aid the government to respond to the emergency and adopt an all-inclusive plan to address diverse challenges related to overall well-being of the population. The underlying strategy of their response has been to: define the challenge of COVID-19 and identify required expertise and resources, ensure people's health and social wellbeing, adjust existing organisational processes, ensure functional partnership with other organisations for effective resource and task sharing, and safeguard health and wellbeing of the organisation's own employees. CONCLUSION: The findings suggest a '4C framework' including four components as the basis of a comprehensive response to emergencies by NGOs: 1. Capability assessment to identify who are in need and what is needed; 2. Collaboration with stakeholders to pool resources and expertise; 3. Compassionate leadership to ensure health and social safety of the employees which ensures their dedication in managing the emergency; and 4. Communication for quick and effective decision making, decentralisation, monitoring and coordination. It is expected that this '4C framework' can help NGOs to embark on a comprehensive response to manage emergencies in resource constrained low- and middle-income countries.
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COVID-19 , Humanos , COVID-19/epidemiologia , Pandemias , Países em Desenvolvimento , Bangladesh/epidemiologia , EmergênciasRESUMO
BACKGROUND: Digitalization has been recognized as an efficient and cost-effective solution to address the increasing need for care due to the ageing population and the rise in people with dementia. This has subsequently increased the need to also care for family caregivers in community settings. Another benefit of digitalization is the introduction of new service concepts within service-dominant logic namely, value co-creation, which is changing the dynamics in healthcare, transitioning from a provider-centric to a customer-centric approach. The literature indicates that this transition is a slow process in healthcare due to the complex service context consisting of multi-stakeholders, with a fragmented decision-making process. This has resulted in limited research on how individuals co-create value through technology. The study aimed to explore how family caregivers to people with dementia living at home, as consumers of healthcare services co-create value in a multi-stakeholder context through a tailormade mHealth application. METHODS: A qualitative explorative design was used. Data were collected through semi-structured interviews with 12 family caregivers of people with dementia living at home. The data were analyzed deductively using qualitative content analysis. RESULTS: The findings show how family caregivers to people with dementia as healthcare consumers, engaged with a mHealth application and other actors in their service network through different levels of value co-creation activities. CONCLUSION: This paper showed a willingness among family caregivers to people with dementia living at home, who mostly consisted of older people, to implement new technology to assist them with their caregiving tasks. The different value co-creation activities adopted by the family caregivers generated different levels of experiential value such as support, knowledge, and increased access to healthcare.
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Demência , Telemedicina , Humanos , Idoso , Cuidadores , Pesquisa Qualitativa , Atenção à SaúdeRESUMO
AIM AND OBJECTIVES: To explore the experiences of caregivers of persons with dementia and dementia coordinators regarding their collaboration in care for a person with dementia and the feasibility of using technology in this collaboration. BACKGROUND: Caregivers of persons with dementia have a significant risk of developing physical strain and psychological stress due to caregiver burden. Internationally, the use of technology is rapidly evolving in health care. Dementia coordinators employed in municipalities in Denmark support caregivers of persons with dementia, thus helping management of life with dementia. The cooperation between dementia coordinators and caregivers is essential, and the use of technology in everyday life is inevitable. METHODS: A qualitative, exploratory, descriptive design was used. Data were derived from five focus group interviews in which 13 caregivers and 14 dementia coordinators participated. The participants' narratives were used to elucidate their experiences and attitudes, and data were analysed using thematic analysis. The study reports according to the COREQ checklist. RESULTS: The analysis revealed three themes: the need for creating a safety net in everyday life, the need for moving together in the right direction and the need for handling technology while preserving relational interaction. CONCLUSIONS: Technology might be used as a mediator to help ease some caregiving tasks or the burden of caregiving. However, technology is an area in which the caregivers must rely on their competences and initiatives. Even though the collaboration between caregivers and dementia coordinators was beneficial and supportive, dementia coordinators experienced technology as outside the core elements of their daily work. RELEVANCE TO CLINICAL PRACTICE: We suggest further discussion regarding who is best suited to support caregivers in making choices regarding which technologies to implement in caring for a person with dementia. If this discussion is not taken seriously, there is a risk of leaving caregivers in a technological quagmire.
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Cuidadores , Demência , Cuidadores/psicologia , Grupos Focais , Humanos , Estresse Psicológico , TecnologiaRESUMO
BACKGROUND: Involving families in care benefits both patients and their families. Sweden was one of the first countries to introduce family nursing, but its effect on nurses' attitudes toward involving families in care was unknown. First, this study aimed to investigate registered nurses' attitudes about the importance of involving families in nursing care. Second, it aimed to compare these attitudes over a decade. METHODS: This comparative study was based on data from two separate studies. Data were collected using the Families Importance in Care - Nurses' Attitudes questionnaire. The first phase of data collection took place in 2009, and the second phase was conducted in 2019. RESULTS: Overall, the nurses were positive towards involving families in care, both in 2009 and 2019. Overall, no significant difference was found between the two studies from 2009 and 2019. On a subscale level, nurses reported significantly higher levels on family as a resource in the study from 2009 compared to the study from 2019. The opposite was shown for the subscales family as a burden and family as an own resource. According to the R2 values (0.002 - 0.04), the effect sizes were small. CONCLUSION: In Sweden, nurses' attitudes toward involving families in care did not change over the studied decade, despite changes in nursing, healthcare-system, and society.
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The aim of this study was to examine nurses' attitudes about the importance of family in nursing care from an international perspective. We used a cross-sectional design. Data were collected online using the Families' Importance in Nursing Care-Nurses' Attitudes (FINC-NA) questionnaire from a convenience sample of 740 registered nurses across health care sectors from Sweden, Ontario, Canada, and Hong Kong, China. Mean levels of attitudes were compared across countries using analysis of variance (ANOVA). Multiple regression was used to identify factors associated with nurses' attitudes and to test for interactions by country. Factors associated with nurse attitudes included country, age, gender, and several practice areas. On average, nurses working in Hong Kong had less positive attitudes compared with Canada and Sweden. The effects of predictors on nurses' attitudes did not vary by country. Knowledge of nurses' attitudes could lead to the development of tailored interventions that facilitate nurse-family partnerships in care.
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Enfermagem Familiar , Enfermeiras e Enfermeiros , Cuidados de Enfermagem , Atitude do Pessoal de Saúde , Estudos Transversais , Humanos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Self-reported measures play a crucial role in research, clinical practice and health assessment. Instruments used to assess self-reported health-related quality of life (HRQoL) need validation to ensure that they measure what they are intended to, detect true changes over time and differentiate between subjects. A generic instrument measuring HRQoL adapted for use among people living with cancer in Uganda is lacking; therefore, this study aimed to evaluate the psychometric properties of the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 in patients with cancer in Uganda. METHODS: Adult patients with various types of cancer (n = 385) cared for at the Uganda Cancer Institute answered the EORTC QLQ-C30 in Luganda or English language, the two most spoken languages in the country. The two language versions were evaluated with regard to data quality (floor and ceiling effects and missing responses), reliability (internal consistency) and validity (construct, known-group and criterion). Construct validity was examined through confirmatory factor analysis (CFA). Mean scores were compared between groups differing in disease stage to assess known-group validity. Criterion validity was examined according to associations between two QLQ-C30 subscales (Global quality of life and Physical function) and the Karnofsky Performance Scale (KPS). RESULTS: Floor and ceiling effects were observed for several scales in the Luganda and English versions. All EORTC scales with the exception of Cognitive function (Luganda α = 0.66, English α = 0.50) had acceptable Cronbach's alpha values (0.79-0.96). The CFA yielded good fit indices for both versions (RMSEA = 0.08, SRMR = 0.05 and CFI = 0.93). Known-group validity was demonstrated with statistically significant better HRQoL reported by patients with disease stages I-II compared to those in stages III-IV. Criterion validity was supported by positive correlations between KPS and the subscales Physical function (Luganda r = 0.75, English r = 0.76) and Global quality of life (Luganda r = 0.59, English r = 0.72). CONCLUSION: The Luganda and English versions of the EORTC QLQ-C30 appear to be valid and reliable measures and can be recommended for use in clinical research to assess HRQoL in adult Ugandans with cancer. However, the cognitive scale did not reach acceptable internal consistency and needs further evaluation.
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Neoplasias/psicologia , Psicometria/normas , Qualidade de Vida/psicologia , Autorrelato/estatística & dados numéricos , Inquéritos e Questionários/normas , Traduções , Adulto , Idoso , Idoso de 80 Anos ou mais , Análise Fatorial , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , UgandaRESUMO
BACKGROUND: Globally, family members account for the main source of caregiving of persons with dementia living at home. Providing care to family members with dementia often has negative health consequences for caregivers such as stress, depression and low quality of life. Yet, formal support for family caregivers (FCs) is limited. Telehealth technology has the potential to provide health care and social support to FCs. This study aims to assess the effectiveness of providing support by healthcare professionals (HPs) through a mobile app in reducing stress, depressive symptoms and loneliness, and improving mental health and quality of life of FCs of persons with dementia. METHODS: Using a pragmatic intervention design, this study will use pre- and post-intervention assessment to evaluate the effectiveness of the proposed intervention in a sample of 78 FCs of persons with dementia (PWD). The intervention will be implemented by approximately 5 HPs specialized in dementia care based in the municipalities in Sweden. The main thrust of the intervention is to provide professional support, with help of an interactive mobile app, to family members in their caregiving role for PWDs. Qualitative interviews with HPs and FCs form the groundwork of the development of the mobile app. By using the app on smart phone or tablet, the FC, in groups of 8-10, will communicate with peers and a HP exchanging ideas on how to deal with PWD's behavioral and cognitive changes and get support. They will also be able to discuss stressful events and access mindfulness exercises focused on themselves. Quantitative data will be collected before and at three time points after the 8-week intervention to assess changes in the health outcomes of the FCs. In-depth interviews will be conducted after the intervention to capture the experiences of FCs and HPs regarding the ease of use and acceptability of the app. DISCUSSION: This tailor-made mobile app has the high potential to be a practical platform for supporting FCs to alleviate stress and improve mental health irrespective of distance to the nearest health care or social service center. TRIAL REGISTRATION: ISRCTN, ISRCTN46137262 . Registered 10 October 2019.
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Demência , Aplicativos Móveis , Cuidadores , Demência/terapia , Humanos , Qualidade de Vida , SuéciaRESUMO
BACKGROUND: Because of worldwide migration, the healthcare staff in general as well as in paedi"atric care specifically is challenged increasingly by people from various ethnic backgrounds. The challenge is related to providing culturally competent care and effectively communicating with people from diverse cultural and ethnic backgrounds who have different health beliefs, practices, values and languages. This also applies to the Swedish society and to Swedish paediatric care. AIM: The purpose of this study was to describe the expectations and experiences of cross-cultural care encounters among minority ethnic parents in Swedish paediatric care. METHOD: A qualitative design was used in the study. Data were collected using semi-structured interviews between October 2011 and March 2012. The sample consisted of 12 parents of minority ethnic backgrounds who had their child in a ward at a children's hospital in the Stockholm County Council. The interviews were analysed using manifest content analysis. ETHICAL CONSIDERATIONS: The Regional Ethical Review Committee approved the study (Ref: Nr: 2011/927-31/5). RESULTS: The analysis of the interviews led to three categories: fundamentals in nursing, cultural sensitivity and understanding, and influencing conditions. CONCLUSIONS: Generic knowledge and skills of nurses outweighed the need for the nurses to have culture-specific knowledge of their patients or relatives in cross-cultural care encounters. Language skills and the availability of bilingual nurses in a multi-ethnic society can facilitate communication and increase parents' satisfaction in cross-cultural care encounters.
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Comunicação , Competência Cultural/psicologia , Assistência à Saúde Culturalmente Competente/organização & administração , Etnicidade/psicologia , Grupos Minoritários/psicologia , Pais/psicologia , Pediatria/organização & administração , Adolescente , Adulto , Atitude do Pessoal de Saúde , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , SuéciaRESUMO
BACKGROUND: Depression, if broadly defined, is the commonest late-life mental disorder. We examined the distribution of depressive symptoms and suicidal thoughts, across age, sex, literacy, and marital status, among elderly individuals residing in rural Bangladesh and participating in a population-based study on health and aging. METHODS: Prevalence figures of depressive symptoms were assessed with SRQ20 (n = 625), and possible social network and economic associations were examined. Morbidity accounts of depressive symptoms and suicidal thoughts were examined for a subsample that also underwent complete medical examination (n = 471). RESULTS: We selected for analyses the items that corresponded to DSM-IV criteria and constructed a dichotomous variable. The prevalence was 45%, and most pronounced among the oldest women (70%). The overall prevalence of suicidal thoughts was 23%. Being a woman, illiterate or single were all risk factors for depressive symptoms and suicidal thoughts. These associations remained unaccounted for by the social network and economic variables. Co-residing with a child and having a high quality of contact were protective of both depressive symptoms and suicidal thoughts. The main findings were replicated in the subsample, where it was found that morbidities were also associated with the outcomes, independently of the four main predictors. CONCLUSIONS: Prevalence figures for depressive symptoms among elderly in rural Bangladesh are high. Demographic, social network, and morbidity factors are independently associated with both depressive symptoms and suicidal thoughts. This is the first study to report prevalence figures for depressive symptoms in this population.
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Depressão/epidemiologia , Transtorno Depressivo/diagnóstico , População Rural , Ideação Suicida , Idoso , Idoso de 80 Anos ou mais , Bangladesh/epidemiologia , Manual Diagnóstico e Estatístico de Transtornos Mentais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Fatores de RiscoRESUMO
BACKGROUND: Sweden has a population of a little more than 9.4 million. The rapid growth of immigration in Sweden has resulted in an increased number of minority ethnic patients and minority ethnic nurses in the Swedish healthcare system. This also applies to paediatric care. AIM: The purpose of this study was to explore how parents with ethnic Swedish backgrounds experience minority ethnic nurses' cultural competence and the care the nurses provide in a Swedish paediatric care context. METHOD: This exploratory qualitative study is of 14 parents with an ethnic Swedish background whose child was in a ward at a children's hospital in Stockholm County Council. Data were collected using semi-structured interviews to identify parents' perceptions and experiences of minority ethnic nurses' cultural competence. The interviews were analysed by qualitative content analysis. RESULTS: The analyses of the interviews led to four main categories: influence of nurses' ethnicity; significance of cross-cultural communication; cross-cultural skills; and the importance of nursing education. CONCLUSIONS: Nurses' ethnicity did not have much impact on parents' satisfaction with their child's care. The parents attached importance to nurses' language skills and to their adaptation and awareness of Swedish culture. They also attached weight to nurses' professional knowledge and personal attributes. The role of nursing education to increase nurses' cultural awareness was highlighted too.
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Competência Cultural , Etnicidade , Grupos Minoritários , Recursos Humanos de Enfermagem , Pais/psicologia , Pediatria , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , SuéciaRESUMO
Rapid communication describes the multifaceted impact of the COVID-19 pandemic on three stakeholder groups: family caregivers of COVID-19 patients, frontline health workers attending to COVID-19 patients, and hospital-discharged COVID-19 patients. This communication aims to provide a nuanced understanding of the challenges faced by each group and their experience during the critical period of the pandemic. Three descriptive qualitative studies were conducted between July 2020 and November 2021, using individual in-depth interviews and focus group discussions. Participants were selected purposively. The findings of the three studies were collated in this rapid communication to compare the unique perspectives of the different stakeholders. Thematic analysis led to categories of Varied challenges and family realities, Accepting risks, Support, and Unexpected positive outcomes. These findings emphasise the need for context-specific dissemination of public health messages, particularly in densely populated urban areas. Policymakers are urged to consider the diverse challenges faced by different groups when formulating pandemic response strategies. Overall, this study provides valuable insights into the intricacies of navigating public health crises, fostering a deeper understanding of human connections and resilience during challenging times.
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Background: The COVID-19 epidemic has especially impacted the urban population in Bangladesh. Studies on COVID-19 have primarily focused on the patient's perspective. It is important to understand the experience of family members who adopt caregiving roles, as the experience of COVID-19 also impacts, and is impacted by, household members. This study aimed to explore the challenges, preventative practices, health-seeking behaviour, and perspectives of navigating the health care system from the perspective of family members of persons who had recovered from COVID-19 during its initial outbreak in Bangladesh. Methods: Participants of this qualitative study were family members (n = 7) of persons who had recovered from COVID-19 (either suspected or confirmed). Semi-structured in-depth interviews were conducted over telephone. Thematic analysis was used to analyse the data. Results: Analysis revealed three key themes: changes in everyday practices and choice of health care, challenges and constraints, and unexpected positive outcomes. All the themes had temporal dimension to them with four distinct phases: early stage of COVID-19, strict lockdown phase, COVID-19 diagnosis and illness period and post COVID-19 recovery. Conclusion: The importance of maintaining social contact for psychological wellbeing during critical times was evident in the study. Online communication and social media enabled participants to remain 'socially connected' which further supported their mental health. Increased attention to hygiene practices both before, during and subsequent to COVID-19 infections within families was reported. Physical distancing in case of a suspected or confirmed COVID-19 case was found logistically and socially impractical in a densely populated city.
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Identifying effective and accessible interventions for family caregivers of persons with dementia (PWD) is crucial as the prevalence of dementia increases in Asia. This study investigated the efficacy of a telephone-intervention on the reduction in caregiver burden, as well as depressive and anxiety symptoms among family caregivers (FCs) of PWD in Malaysia. A single-blinded randomized controlled trial was carried out with 121 FCs of PWD selected from memory or psychiatry clinics in three tertiary hospitals in Malaysia, who were randomly allocated into the intervention or control group. The intervention group received the psychoeducational intervention delivered by healthcare staff via telephone for 10 sessions over 12 weeks. The outcome of the intervention was measured by the Malay version of the Zarit Burden Interview and the Hospital Anxiety and Depression Scale at baseline and post-intervention. An intention to treat analysis shows that caregiver burden, anxiety symptoms, and psychological distress among FCs in the intervention group decreased by 7.57 units (p < 0.001), 2.46 units (p < 0.001), and 2.98 units (p = 0.011), respectively, at post-intervention, compared to the differences from baseline to post-intervention in the control group. Policies aimed at integrating the telephone-intervention into memory/psychiatry clinics in Malaysia may help FCs of PWD to reduce their caregiver burden and stress while caring for a family member with dementia.
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Cuidadores , Demência , Telefone , Humanos , Demência/enfermagem , Demência/psicologia , Malásia , Cuidadores/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Saúde Mental , Método Simples-Cego , Adulto , Depressão/psicologia , Ansiedade/psicologia , Estresse Psicológico/psicologiaRESUMO
OBJECTIVES: The study aimed to investigate the prevalence and factors associated with poor health-related quality of life in adults with cancer in Uganda. METHODS: This cross-sectional study surveyed 385 adult patients (95% response rate) with various cancers at a specialised oncology facility in Uganda. Health-related quality of life was measured using the EORTC QLQ-C30 in the Luganda and English languages. Predetermined validated clinical thresholds were applied to the instrument in order to identify patients with poor health-related quality of life, that is, functional impairments or symptoms warranting concern. Multivariable logistic regression was used to identify factors associated with poor health-related quality of life in six subscales: Physical Function, Role Function, Emotional Function, Social Function, Pain and Fatigue. RESULTS: The mean age of the patients was 48 years. The majority self-reported poor functioning ranging between 61% (Emotional Function) to 79% (Physical Function) and symptoms (Fatigue 63%, Pain 80%) at clinically concerning levels. These patients were more likely to be older, without formal education and not currently working. Being an inpatient at the facility and being diagnosed with cervical cancer or leukaemia was a predictor of poor health-related quality of life. CONCLUSION: Improvement of cancer care in East Africa requires a comprehensive and integrated approach that addresses various challenges specific to the region. Such strategies include investment in healthcare infrastructure, for example, clinical guidelines to improve pain management, and patient education and support services.
Main findings: The majority of adult patients attending specialized cancer care in Uganda report impaired physical and emotional functioning, and pain, at levels that merit clinical concern.Added knowledge: The large proportion of in- and outpatients with poor self-reported health-related quality of life indicates supportive care needs, exceeding corresponding figures from high-income settings.Global health impact for policy and action: Improvement of cancer care in East Africa requires a comprehensive approach that should include investment in healthcare infrastructure, e.g. clinical guidelines to improve pain management, and patient education and support services.
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Qualidade de Vida , Neoplasias do Colo do Útero , Adulto , Feminino , Humanos , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Estudos Transversais , Uganda/epidemiologia , Dor/epidemiologia , Dor/psicologia , Inquéritos e Questionários , Fadiga/epidemiologia , Fadiga/etiologia , Fadiga/psicologiaRESUMO
During July 2007 to June 2010, BRAC, a nongovernment organization in Bangladesh, reported 713 incidents of rape and attempted rape of children (< 18 years) in rural Bangladesh. This study explores these 713 incidents to identify possible patterns related to the victims, perpetrators, and different dynamics of the incidents. Rape and attempted rape, particularly of young girls, constituted 64% of all reported incidents of violence against children. Children were found to be abused by men from all walks of life, mainly by non-family-members (83%). Similar diversity was seen in the location, time, and context of the incidents. The present study attempts to put forward an overall picture of the depth of the problem of child sexual abuse in rural Bangladesh, linking the incidents with the socially constructed gender relations of power and how it perpetuates sexual abuse of children, especially girls.
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Abuso Sexual na Infância/estatística & dados numéricos , Distribuição por Idade , Bangladesh , Criança , Abuso Sexual na Infância/psicologia , Cultura , Feminino , Identidade de Gênero , Humanos , MasculinoRESUMO
Introduction: The long-term impact of COVID-19 on mental health, particularly in relation to socio-economic vulnerabilities, has received little attention. This study reports the prevalence of mental health-related symptoms among previously hospitalized patients after recovery from COVID-19, and its association with socio-economic status (SES). Methods: Data collection of this cross-sectional study was conducted during February-April 2021, among previously hospitalized patients with COVID-19 like symptoms, on average six months after their discharge from the hospital. Using DASS-21, a validated scale to document symptoms of depression, anxiety, and stress, information on mental health-related symptoms were recorded from 481 respondents along with sociodemographic and economic information through telephone interviews. Chi-square tests were performed to identify significant group differences. Multinomial logistic regression analyzed the association between the changes in socioeconomic characteristics and mental health-related symptoms. Relative index of inequality (RII), slope index of inequality (SII), and concentration index (CIX) were applied to capture relevant inequalities in relation to mental health-related symptoms. Results: Eleven percent of the respondents reported changes in employment status, nearly half changes in income and expenditure. Forty-five percent reported symptoms of depression, anxiety and/or stress, and 12% reported coexistence of all three symptoms. Women [Adjusted Odds Ratio, AOR: 2.95; 95% Confidence Interval, CI: 1.39-5.68], and those who reported changes in occupation [AOR: 3.04; 95% CI: 1.01-9.08] and expenditure [AOR: 2.46; 95% CI: 1.12-5.37] were more likely to report all three mental health-related symptoms compared to men and those without changes in occupation and expenditure. The older age group was less likely [AOR: 0.96; 95%CI: 0.93-0.99] to report coexistence of all three symptoms compared to their younger counterparts. Negative values of concentration index (CIX) indicate that any one mental health-related symptom was significantly concentrated among those with lower expenditure and poor SES. Conclusion: This study will help in addressing mental health-related challenges after recovery from COVID-19 among the identified vulnerable groups through relevant community-based and clinical response, including counseling services, in Bangladesh and similar LMIC contexts.
Assuntos
COVID-19 , Masculino , Humanos , Feminino , Idoso , Saúde Mental , Status Econômico , Bangladesh/epidemiologia , Estudos Transversais , PrevalênciaRESUMO
Background: There is increasing evidence of long-term consequences of COVID-19. The world has seen multidimensional impact of the pandemic and Bangladesh is no exception to that. Policymakers in Bangladesh laid out strategies to curb the initial spread of COVID-19. However, long-term consequences of COVID-19 received little or no attention in the country. Evidence suggests that people presumed to be recovered face multidimensional post-covid consequences. This study aimed to describe the aftermath of COVID-19 in relation to social, financial and health related aspects among previously hospitalized patients. Methods: This descriptive qualitative study includes participants (n = 14) who were previously hospitalized for COVID-19 and returned home after recovery. The participants were part of a mixed method study from which they were purposively selected. Semi-structured in-depth interviews were conducted over telephone. Inductive content analysis was used to analyze the data. Results: Twelve sub-categories emerged from the data analysis which converged into five main categories. The main categories included perspective on physical health, financial struggle, life adjustment, interplay between different domains, and spontaneous support. Conclusion: The lived experiences of COVID-19 recovered patients highlighted multidimensional impact on their daily lives. Physical and psychological wellbeing found to be related to the effort of restoring financial status. People's perception about life altered due to pandemic, for few the pandemic was an opportunity to grow while others found it difficult to accept the hardship. Such multidimensional post COVID-19 impact on people's lives and wellbeing holds considerable implication for response and mitigation plan for future related pandemics.