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1.
Support Care Cancer ; 32(5): 287, 2024 Apr 15.
Artigo em Inglês | MEDLINE | ID: mdl-38619660

RESUMO

PURPOSE: Advanced lung cancer and its treatment serve as a sudden stressful event that profoundly impacts the psychological experience of both the patients and their primary caregiver. This study used dyadic analyses to explore the dyadic effects of social support on benefit finding and whether hope level mediates the patient-caregiver dyads in advanced lung cancer. METHODS: Two hundred ninety-five pairs of patients with advanced lung cancer and primary caregivers completed the Social Support Rating Scale (SSRS), the Herth Hope Index (HHI), and the Benefit Finding Scale (BFS). Dyadic analyses were conducted using structural equation modelling based on the actor-partner interdependence mediation model. RESULTS: The results indicated that for both patients (B = 0.259, 95% CI = 0.135-0.423, P < 0.001) and their primary caregivers (B = 0.596, 95% CI = 0.403-0.838, P < 0.001), hope level mediated the actor effect of social support on benefit finding; social support was positively associated with hope level and further enhanced benefit finding. Regarding partner effects (B = 0.242, 95% CI = 0.119-0.404, P < 0.001), primary caregivers' social support significantly indirectly affected patients' benefit finding through patients' hope level. CONCLUSION: There is an interaction between social support, hope level, and benefit finding in patients with advanced lung cancer and their primary caregivers. Healthcare professionals ought to be vigilant in recognizing patients and caregivers who are vulnerable, have limited social support, and possess diminished hope levels. At the same time, nurses should provide timely psychological support and counseling to patients and their caregivers, encourage them to actively participate in social activities, and inspire their confidence and hope in life, thus improving their benefit findings.


Assuntos
Cuidadores , Neoplasias Pulmonares , Humanos , Neoplasias Pulmonares/terapia , Pessoal de Saúde , Apoio Social , Análise de Classes Latentes
2.
Can J Nurs Res ; : 8445621241247862, 2024 Apr 15.
Artigo em Inglês | MEDLINE | ID: mdl-38619920

RESUMO

BACKGROUND: A key role of nurses working in long-term care homes (LTCHs) is to promote the involvement of care partners in end-of-life (EOL) care. However, studies on the involvement of care partners in EOL care in LTCHs have focused on care planning and decision-making. While care partners can participate in other ways, it's unclear how they are currently involved in EOL care by staff. PURPOSE: We aimed to explore the involvement of care partners in the EOL care of an older adult living in a LTCH. METHODS: A qualitative case study was conducted. Data was collected from a sample of four nurses and three care partners, using sociodemographic questionnaires, individual semi-structured interviews, documents pertaining to the LTCH's philosophy for EOL care, and a field diary. RESULTS: The results of a thematic analysis showed the broad scope of care partners' possible involvement, including contributing to care, obtaining information, and being present. As there was some variation in care partners' desire to be involved, nurses seemed to rely on them to convey their wishes. To promote this involvement, some strategies aimed at health professionals and managers were suggested. CONCLUSIONS: These results can guide improvement in clinical practices and raise awareness on the EOL care experiences of care partners.

3.
Osteoporos Int ; 2024 Apr 15.
Artigo em Inglês | MEDLINE | ID: mdl-38622263

RESUMO

An integrative literature review was conducted to understand family/caregiver influence on osteoporosis management for older people. Findings include caregivers' overprotection, caregivers' risks for fragility fractures due to caregiving role, poor bone health in caregivers, and caregivers' burden and facilitators. Caregivers should be included in bone health and discharge planning. Literature on family/caregiver influence on osteoporosis management for older people is sparse. Older people are prone to osteoporosis and fragility fractures due to their age, often triggering the need for a caregiver after experiencing a fragility fracture. These fractures pose significant costs to the patient and health systems and are projected to increase with the aging population. This study applied an integrative literature review methodology to key literature findings on family/caregiver influence on osteoporosis management for older people. Key findings include caregivers' tendency to overprotect persons who experience hip fracture by limiting mobilization, thus impeding recovery, caregivers' risks for their own fragility fractures due to the demands of their caregiving role, risks of poor bone health in caregivers, and caregivers' experience of significant burden for which facilitators have been identified. Family caregivers of older people with osteoporosis have unique needs and require support and resources, especially after their loved one experiences a hip fracture. Informal caregivers must be considered in bone health education and discharge planning. They should be considered in the creation of osteoporosis guidelines and within the work of fracture liaison services. More research is needed to increase understanding about family caregiver influence on osteoporosis management.

4.
Dementia (London) ; : 14713012241247339, 2024 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-38623057

RESUMO

Young-onset dementia (YOD) affects individuals under 65 years of age, often leading to loss of employment and independence. Families provide increasing levels of care to family members with YOD, resulting in changes to their daily lives, including their occupational pursuits. This review examines evidence of the occupational implications for family members who provide care to a family with YOD to identify: (i) the influence and impact caregiving tasks and responsibilities have on employment, volunteering, and education, and (ii) caregiver, and caregiving situation factors associated with changes in employment, volunteering, and education. A scoping review was performed using eight electronic databases. Included articles were narratively synthesized using a thematic analysis. Sixteen studies met the inclusion criteria and were included for review. The over-arching (main) theme of 'decision-making' was identified, with family members required to make choices about their own occupational goals and roles to be able to provide care to family living with YOD. The outcomes of these decisions are dynamic and changeable across the caregiving trajectory. Three caregiving factors influence decision-making: (1) Implications of Combining Caregiving and Occupations, (2) Altered Identity (3) Strategies to Support Caregivers of Individuals Living with YOD. A fourth theme was also identified 'Guidance for Researchers To Support Caregivers'. There is a scarce body of literature examining the influence caregiving has on occupational outcomes for the YOD caregiver population. Much of this work is descriptive and lacks focus on the implications, particularly long-term impacts. This review provides a foundational guide for future research and practices to support YOD family caregivers to obtain and sustain occupations.

5.
Nutr Health ; : 2601060241245255, 2024 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-38623628

RESUMO

Background: Childhood obesity is one of the most serious public health epidemics of the 21st century. Observational studies report that increases in portion size (PS) have occurred in parallel with levels of obesity. Increased PSs of high-energy-dense foods can promote overeating, and without compensatory behaviours, can contribute to childhood obesity. Caregivers make decisions about PSs for children in the home and nursery environment, thus are gatekeepers to child food intake. Understanding caregiver PS decisions can aid in the best practice of PS provision to young children. The aim of this study was to explore parent and nursery staff influences on child PS selection and their suggestions for useful tools/strategies in PS decisions. Methods: A qualitative design was employed using focus group discussions (FGDs) with parents and nursery staff of children aged 3-5 years. FGDs were employed given their ability to generate rich data, as well as permit the exploration of collective perceptions, attitudes, behaviours and experiences. Data were analysed using an inductive, semantic approach to reflexive thematic analysis. Results: Four FGDs were conducted: two with parents (n = 13), two with nursery staff (n = 17). Four overarching themes were derived: (i) awareness of PS guidelines; (ii) control over PS; (iii) social influences on children's eating behaviours; (iv) child-specific, social and external factors influencing parent and nursery staff PS decisions. Additionally, participants discussed tools/strategies they believe would be useful in PS decisions. Conclusion: Data from the themes suggest that caregiver control, social, child-specific and external factors are more influential than PS guidelines in both parent and nursery staff PS decisions for young children aged 3-5 years. These findings can inform future childhood obesity prevention initiatives focussed on improving parent and nursery staff provision/use of age-appropriate PSs.

6.
Am J Alzheimers Dis Other Demen ; 39: 15333175241248056, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38621659

RESUMO

The study aims to identify psychological symptoms (depression and anxiety) and their relationship to the quality of life among dementia patients' caregivers, and whether there are differences in the level of each of them due to the gender variable. The study follows the correlational approach, with a sample of 174 dementia patients' caregivers. To pursue the analysis, the study uses 3 measurement tools: anxiety, depression, and quality of life. The results show that the level of depression, anxiety, and quality of life among dementia patients' caregivers is moderate. It also finds that there is a positive relationship between anxiety and depression, and there is a negative relationship between quality of life and anxiety and depression. There are no differences in the level of depression and anxiety due to gender, as the study finds female caregivers to have a higher level of quality of life.


Assuntos
Demência , Qualidade de Vida , Humanos , Feminino , Qualidade de Vida/psicologia , Cuidadores/psicologia , Demência/psicologia , Depressão/psicologia , Ansiedade/psicologia
7.
Support Care Cancer ; 32(5): 288, 2024 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-38622350

RESUMO

PURPOSE: Visitor restriction policies to prevent the spread of COVID-19 among patients and clinicians were widespread during the pandemic, resulting in the exclusion of caregivers at key points of cancer care and treatment decision-making. The aim of this study was to explore how visitor restrictions impacted cancer treatment decision-making and care from patient and physician perspectives. METHODS: Sixty-seven interviews, including 48 cancer patients and 19 cancer and palliative care physicians from four academic cancer centers in the USA between August 2020 and July 2021. RESULTS: Visitor restrictions that prevented caregivers from participating in clinic appointments and perioperative hospital care created challenges in cancer care that spanned three domains: practical, social, and informational. We identified eight themes that characterized challenges within the three domains across all three groups, and that these challenges had negative emotional and psychological consequences for both groups. Physicians perceived that patients' negative experiences due to lack of support through the physical presence of caregivers may have worsened patient outcomes. CONCLUSIONS: Our data demonstrate the tripartite structure of the therapeutic relationship in cancer care with caregivers providing critical support in the decision-making and care process to both patients and physicians. Caregiver absences led to practical, psychosocial, and informational burdens on both groups, and likely increased the risk of burnout among physicians. Our findings suggest that the quality of cancer care can be enhanced by engaging caregivers and promoting their physical presence during clinical encounters.


Assuntos
COVID-19 , Neoplasias , Humanos , COVID-19/prevenção & controle , Pandemias/prevenção & controle , Braço , Hospitais , Cuidadores/psicologia , Neoplasias/terapia , Neoplasias/psicologia , Pesquisa Qualitativa
8.
J Multidiscip Healthc ; 17: 1541-1548, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38623394

RESUMO

Objective: This study explores the correlation between coping style, quality of life, and illness uncertainty in the family caregivers of patients with liver cancer. Methods: Employing convenience sampling, 210 family caregivers of patients with liver cancer who met the admission criteria were selected from a grade A infectious disease hospital in Beijing between January and December 2022. A cross-sectional survey was conducted using the Simplified Coping Style Questionnaire, Caregiver Quality of Life, and the Mishel Uncertainty in Illness Scale for Family Members. This study analysed the correlations between coping styles, quality of life, and illness uncertainty in these caregivers. Results: The study found that family caregivers of patients with liver cancer had average scores for illness uncertainty (83.44 ± 11.86), coping style (33.19 ± 9.79; both positive [23.02 ± 6.81] and negative [10.17 ± 5.05]), and quality of life (169.53 ± 32.46). A negative association was observed between illness uncertainty in these caregivers and positive coping style (r = -0.207, p = 0.003), physical status (r = -0.182, p = 0.008), psychological status (r = -0.200, p = 0.004), and social adaptation (r = -0.229, p = 0.001). Conclusion: The study concludes that illness uncertainty in family caregivers of patients with liver cancer is at a moderate level. Furthermore, there is a notable correlation between illness uncertainty, coping style, and quality of life in these caregivers.

9.
Innov Aging ; 8(4): igad140, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38628819

RESUMO

Background and Objectives: Because of the global population aging, more informal carers become older adults. In Nigeria, the African country with the largest population of adults aged 60 years and older, self-construal rooted in the African collectivist philosophy generally shapes informal caregiving for older adults. However, there is a general paucity of studies on older adults' informal caregiving roles, particularly about their motivations for caregiving. This study explored older adults' motives for informal caregiving to their care recipients in urban Southeast Nigeria. Research Design and Methods: This study adopted a hermeneutic phenomenological research design. In-depth interviews were conducted with 30 purposively selected older adults aged 54-88 who were the primary carers of other older adults in the family and community. The collected data were analyzed using van Manen's thematic analysis method, using QSR NVivo 12 software. Results: A total of 4 main themes emerged from the participants' responses: reciprocity of kindness, altruism, a sense of moral responsibility, and eagerness for peaceful longevity. The findings generally showed that religion and culture were the latent factors ingrained in these motivations for informal caregiving. Discussion and Implications: Although the African philosophy emphasizes altruism, reciprocity seems more prominent in specific traditional African communities, as observed in Southeast Nigeria. It serves as a means to prioritize family members' needs. The findings indicate the need for the government to establish sustainable programs and policies that support older people in their caregiving role. Doing so will enable carers to derive psychosocial gains from informal caregiving and sustain the caregiving culture of Nigeria.

10.
Qual Life Res ; 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38632146

RESUMO

PURPOSE: Caregiver burden (CB) is typically self-assessed by caregivers. However, an emerging concept is assessment of CB by the recipients of care, i.e., the patient. The specific objectives are (1) to assess the level of agreement between care recipients' and caregivers' view on CB, across financial, physical, emotional, and social domains; (2) to explore two care recipient perspectives: their self-perceived burden (CR-SPB), and their interpretation of the caregiver's view (Proxy-CB). METHODS: Data were collected from 504 caregiver-care recipient dyads in the U.S. using an online Qualtrics panel. The survey assessed caregiver burden using CarerQol and newly developed items. The level of agreement between responses was quantified using weighted kappa (κ) coefficients for individual items and intraclass correlation coefficients (ICC) for index/summary scores. RESULTS: The average age of caregivers was 49.2 years, and 62.7 years for care recipients. Dyads most commonly consisted of spouses/partners (34.5%); 68.3% lived together. Proxy-CB aligned more closely with caregiver's view, with moderate to substantial agreement across CB domains (from κ = 0.48 for emotional to κ = 0.66 for financial). In the same perspective, the CarerQol-7D Index showed moderate agreement (ICC = 0.58) and the summary score of CB items substantial agreement (ICC = 0.76). Care recipients generally overestimated  CB in the Proxy-CB perspective, while they underestimated it in the CR-SPB perspective. CONCLUSION: Results demonstrate there is a difference between perspectives. Strong agreement in Proxy-CB perspective suggests that care recipients can potentially substitute for caregivers depending on the domain. CR-SPB agrees less with caregivers and may provide complementary information.

11.
Acad Pediatr ; 2024 Apr 10.
Artigo em Inglês | MEDLINE | ID: mdl-38609015

RESUMO

OBJECTIVES: Provide an in-depth and psychometrically rigorous profile of the emotional well-being and sleep-related health of family caregivers of children with medical complexity (CMC). METHODS: Cross-sectional survey study of family caregivers of CMC receiving care from a pediatric complex care center between May 2021 and March 2022. Patient Reported Outcomes Measurement Information System Short-Forms (PROMIS-SF) assessed global mental health, emotional distress (anxiety, depression, anger), psychological strengths (self-efficacy, emotional regulation, meaning and purpose), and sleep-related health (fatigue, sleep-related impairment). Student's t-tests compared the sample's mean T-scores to US population norms. Pearson's correlation coefficient (ρ) examined associations between measures of psychological strengths and emotional distress. Unadjusted linear regression analyses explored relationships between well-being outcomes and child and caregiver characteristics. RESULTS: Compared to US population norms, caregivers of CMC (n = 143) reported significantly lower global mental health and emotional regulation ability as well as elevated symptoms of anxiety, depression, anger, fatigue, and sleep-related impairment (all p <.001). Whereas participants reported a significantly higher sense of meaning and purpose (p<.05), levels of self-efficacy were not significantly different from population norms. We observed moderate-to-strong inverse relationships between psychological strengths and emotional distress (ρ range, -0.39 to -0.69); with the strongest inverse associations found between emotional regulation ability and emotional distress. In exploratory analyses, caregiver race/ethnicity, socioeconomic status, and child health insurance type were significantly associated with caregiver well-being. CONCLUSION: Family caregivers of CMC report poor well-being, most notably, increased symptoms of anxiety and reduced global mental health and sleep-related health. WHAT'S NEW: In this cross-sectional survey of family caregivers of children with medical complexity, caregivers reported clinically significantly poorer global mental health, higher emotional distress, and reduced sleep-related health. This study provides potential therapeutic targets for future psychosocial interventions.

12.
Intensive Crit Care Nurs ; 83: 103689, 2024 Apr 12.
Artigo em Inglês | MEDLINE | ID: mdl-38613939

RESUMO

Critically ill patients in rural areas at times require an interhospital transfer from their local hospital to an urban tertiary care centre for advanced critical care services not available locally. Family members have described this transfer window as a communication blackout and one of the most stressful times of their relative's critical illness event. OBJECTIVE: To explore what communication process would be most acceptable between family members and transfer team members (consisting of critical care nurses, paramedics, and physicians) during interhospital transfers of critically ill patients. RESEARCH METHODOLOGY: Using a qualitative descriptive approach of critical thematic analysis, data were collected in September and November 2022, from focus groups of five family members and four transfer team members who experienced this phenomenon. SETTING: Rural Canada where speciality services such as interventional cardiology and neurosurgery are unavailable, and a tertiary care hospital is more than 160 km away. FINDINGS: Within themes of unequal power relations and status-based hierarchies, family members described how communication during interhospital transfers supports connection and coping, challenges experienced in accessing information, an overwhelming unknown, and practical challenges of the transfer. Transfer team members described a context of power relations and status-based hierarchies in which themes of transfer team burden, role confusion or connection, protection and management of family members, and complexities of information sharing during interhospital transfers were identified. CONCLUSION: In critical illness, communication linkages are created between healthcare providers and family members but are broken during an interhospital transfer resulting in increased stress for family members. Acceptable communication elements described by transfer team members and family members may maintain these linkages during the transfer window. IMPLICATIONS FOR CLINICAL PRACTICE: These findings provide the foundation for critical care nurses and their professional colleagues to take family care to the next level with an explicit communication strategy during interhospital transfers.

13.
Nutrients ; 16(7)2024 Apr 04.
Artigo em Inglês | MEDLINE | ID: mdl-38613085

RESUMO

The objective of this cross-sectional study was to assess eating competence (EC) and the adherence to the division of responsibility in child feeding (sDOR) of Brazilian caregivers of children with celiac disease (CD). It also examined the association between EC and sDOR, children's adherence to a gluten-free diet, and sociodemographic data. This study administered a survey set that included sociodemographic data, health-related data, eating habits, and the instruments ecSI2.0TMBR and sDOR.2-6yTM BR, validated for a Brazilian population. The sample comprised 50 caregivers of children with CD (between 24 and 72 months of age). The participants following a gluten-free diet (GFD) presented higher scores for all EC domains and the total EC. The total EC scores were higher for the participants over 40 y/o, frequently having meals as a family, with their children consuming more than three servings of fruit and at least one serving of vegetables daily and complying with a GFD. Different from the EC, the sDOR.2-6yTM scores did not differ between the participants complying with a GFD. The sDOR.2-6yTM mealtime structure domain scores were significantly associated with the EC eating attitude, food acceptance, contextual skills, and total. These findings support the need for greater attention to exploring the division of responsibility in feeding and EC in pediatric celiac disease, potentially enhancing intervention strategies for patients and their families.


Assuntos
Doença Celíaca , Criança , Humanos , Estudos Transversais , Brasil , Cuidadores , Frutas
14.
J Aging Soc Policy ; : 1-11, 2024 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-38626336

RESUMO

As the population ages and supportive services are increasingly delivered in home- and community-based settings, greater demands are placed on family caregivers. This essay introducing the special issue of the Journal of Aging and Social Policy discusses signs of progress on policies to ease the burden on family caregivers. It introduces a series of articles that reflect the growing body of research on caregiver-related policy actions. These actions range from expanding access to paid family leave and payment for providing care, to ensuring access to better data about family caregivers and improving the post- hospital discharge experiences of rural and underserved caregivers. It also explores a major conundrum around caregiving policy - why progress on family caregiving policy has been so slow, despite its clear importance to the health and welfare of those who receive supports, as well as to those providing supports. In addition, the essay discusses developments, such as Biden administration actions and the RAISE Family Caregiver Advisory Council, indicating that the political dynamic around caregiving has changed, concluding that this is a uniquely hopeful time for family caregiver-related policy.

15.
J Genet Couns ; 2024 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-38627912

RESUMO

Intersex individuals, encompassing people with diverse sex characteristics that do not fit binary frameworks of sex, have long faced a history of medical secrecy, discrimination, and societal stigma, contributing to their limited social visibility. In recent years, increased awareness of intersex issues and a robust advocacy movement have drawn significant attention to the experiences of intersex individuals and their families. This study contributes to the existing literature by examining the experiences and needs of parents of intersex individuals within genetic healthcare systems, bridging a critical gap, and advocating for more comprehensive and supportive healthcare practices. Semi-structured interviews were conducted with 14 parents of intersex individuals, and reflexive thematic analysis was used to inductively generate four major themes. Themes highlighted the need for improved accessibility of intersex healthcare, the importance of multidisciplinary healthcare teams, and the significance of clinical diagnosis provided by genetics professionals. Furthermore, the study highlighted the necessity of a thoughtful approach to information provision and the impact of genetic investigations on family dynamics. Genetics professionals can play a pivotal role in raising awareness about intersex variations, improving diagnostic processes, collaborating within healthcare teams, and providing specialized support to address psychosocial concerns. The study underscores the importance of treating families as a collective entity and addressing the impact of genetic investigations on the family unit. By addressing the challenges and implementing the recommendations outlined, healthcare institutions can create a more compassionate, inclusive, and effective healthcare environment for the intersex community.

16.
Med Law Rev ; 2024 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-38629253

RESUMO

Medical assistance in dying (MAiD) was legalised federally in Canada after the Supreme Court decision in Carter v Canada (Attorney General) [2015] 1 SCR 331. The federal legislative framework for MAiD was established via Bill C-14 in 2016. Caregivers and patients were central to Carter and subsequent litigation and advocacy, which resulted in amendments to the law via Bill C-7 in 2021. Research has primarily focused on the impacts of regulation on caregivers and patients. This qualitative study investigates how caregivers and patients influence law reform and the operation of MAiD practice in Canada (ie, behave as 'regulatory actors'), using Black's definition of regulation. We found that caregivers and patients performed sustained, focused, and intentional actions that influenced law reform and the operation of MAiD in practice. Caregivers and patients are not passive objects of Canadian MAiD regulation, and their role in influencing regulation (eg, law reform and MAiD practice) should be supported where this is desired by the person. However, recognising the burdens of engaging in regulatory action to address barriers to accessing MAiD or to quality care, and MAiD system gaps, other regulatory actors (eg, governments) should minimise this burden, particularly where a person engages in regulatory action reluctantly.

17.
J Fam Nurs ; : 10748407241231342, 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38629802

RESUMO

Family nursing researchers are charged with addressing the conceptual and methodological underpinnings of family research when developing family-focused interventions. Step-by-step guidance is needed that integrates current science of intervention development with family science and helps researchers progress from foundational work to experimental work with policy integration. The purpose of this manuscript is to provide pragmatic, evidence-based guidance for advancing family intervention research from foundational work through efficacy testing. Guidance regarding the development of family interventions is presented using the first three of Sidani's five-stage method: (a) foundational work to understand the problem targeted for change; (b) intervention development and assessment of acceptability and feasibility; and (c) efficacy testing. Each stage of family intervention development is described in terms of process, design considerations, and policy and practice implications. Examples are included to emphasize the family lens. This manuscript provides guidance to family scientists for intervention development and implementation to advance family nursing science and inform policy.

18.
Assist Technol ; : 1-6, 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38630031

RESUMO

The Health App Review Tool (HART) is an evaluation tool that is designed to help the users in evaluation of the health apps for Alzheimer's Disease and Related Dementias (ADRD) population. As the development of the HART continues, the domain items that HART addresses require evaluation to determine if they meet the intended required criteria for the users.To complete content validation of the HART 10 health care professions provided content validation of the HART via a content validation form. Specifically, data collection took place virtually through Microsoft Teams and Qualtrics-based content validity index. Following, revisions were made through a consensus process involving 3 rehabilitation experts, minimizing potential conflicts.Findings indicate 76 of 109 items were considered acceptable, 19 items were in need of review and 14 items in need of revision. In sum 30% of the total HART items required either review or revision to improve HART validity. The changes were implemented through consensus revisions.

19.
BMC Public Health ; 24(1): 1030, 2024 Apr 12.
Artigo em Inglês | MEDLINE | ID: mdl-38609905

RESUMO

BACKGROUND: Patients with advanced breast cancer require consistent help and support from family caregivers. These caregivers often endure financial burdens and psychological stress, with their experiences significantly influenced by sociocultural factors. This study aims to explore the experiences of family caregivers of advanced breast cancer patients in Punjab province, Pakistan. METHODS: Data was collected through in-depth interviews with fifteen family caregivers of advanced breast cancer patients in three major cities of Punjab, Pakistan. Caregivers, who had been in close contact with the patient for the last two years, were purposively sampled from five major hospitals. The data was analyzed using thematic analysis. RESULTS: The study revealed that the experiences of family caregivers are deeply rooted in the sociocultural context. Key themes identified include social responsibility and cultural reciprocity norms; limited awareness and mobility options for caregivers; financial responsibility and strain; impacts of beauty myths and shyness on caregiving attitudes and decisions; the stressful and emotional nature of caregiving; treatment perspectives influenced by social groups; challenges in consulting male physicians and associated stigma; the role of religious beliefs in caregiving; and stress management, with religion often being a coping mechanism. These factors can contribute to delayed treatment decisions for patients. CONCLUSIONS: Family caregivers are crucial in facilitating timely treatment decisions for advanced breast cancer patients in the Pakistani context. To minimize treatment delays and alleviate caregiver stress, addressing sociocultural barriers in care-seeking is essential. A tailored approach, considering sociocultural and religious factors, is imperative for the management and early diagnosis of breast cancer, necessitating appropriate policymaking and implementation.


Assuntos
Neoplasias da Mama , Cuidadores , Humanos , Masculino , Paquistão , Neoplasias da Mama/terapia , Fardo do Cuidador , Pesquisa Qualitativa
20.
Support Care Cancer ; 32(4): 266, 2024 Apr 03.
Artigo em Inglês | MEDLINE | ID: mdl-38568470

RESUMO

BACKGROUND: Family caregivers, also known as informal caregivers, are critical for the home care of patients with urostomy. The present study aimed to investigate the benefits of family caregivers in China while taking care of patients with urostomy from a positive perspective. METHODS: A qualitative research design was adopted, with a thematic analysis. The qualitative research software NVivo was used for data analysis. Twenty-two family caregivers of urostomy patients participated in an in-depth interview for 60-90 min. A qualitative analysis was performed using a thematic approach in accordance with the six-stage thematic analysis process reported by Braun and Clarke (2006). RESULTS: The following four benefits were identified: mastering knowledge and skills, promoting self-growth, establishing close family ties, and changing the way of life. Among these four themes, 11 sub-themes were constructed by coders. CONCLUSIONS: This study provides new insights into intervention measures for family caregivers of patients with urostomy, which could play an important role in developing the overall model of family-centered nursing.


Assuntos
Cuidadores , Serviços de Assistência Domiciliar , Humanos , China , Pesquisa Qualitativa , População do Leste Asiático
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