Role Of Primary Caregiver Research Articles

Experiencia del cuidador familiar de quien fallece por cáncer: un dolor del cual hay que aprender a sobreponerse

Objetivo: describir la experiencia que tiene durante el momento de la muerte el cuidador de un familiar que falleció por cáncer. Metodología: estudio descriptivo, fundamentado en el enfoque fenomenológico de Husserl con el método de Colaizzi. Los participantes del estudio fueron dieciséis adultos que desempeñaron el rol de cuidador familiar principal por más de seis meses, dentro de un periodo de 8 a 18 meses, antes de realizarse la entrevista a profundidad. Los códigos descriptores y nominales se identificaron y transcribieron entre enero y marzo de 2018. Se realizó una revisión cruzada. Resultados: la experiencia que tuvo durante el momento de la muerte el cuidador de un familiar que falleció por cáncer se construyó a partir de siete temas: el final de una gran batalla; el cuerpo presente y el alma ausente; sentirse incompleto; preguntarse por qué; establecer lo urgente; despedirse, y buscar motivos para seguir viviendo. Conclusiones: para el cuidador de un familiar que ha fallecido por cáncer, afrontar el momento de la muerte genera un dolor indescriptible. En esta experiencia convergen factores sociales, económicos, psicológicos y espirituales, por lo que es necesario superar obstáculos y situaciones inesperadas que, a pesar de su dificultad, obligan a aprender de ellas y a hallar un significado.

Contrasting the risk factors of grief and burden in caregivers of persons with dementia: Multivariate analysis

BackgroundCaregivers of persons with dementia (PWD) can experience loss and grief long before the death of the person. While such phenomenon of pre‐death grief (PDG) has been increasingly described, we are uncertain how it can be distinct from the well‐studied construct of caregiver burden.ObjectiveTo determine whether there are differences in the risk factors of PDG and caregiver burden to aid in our understanding of the relationship between the two constructs.MethodsSpouses or children of community‐dwelling PWD were consecutively sampled from two tertiary hospitals. They completed questionnaires containing a PDG scale, a caregiver burden scale, and information related to the caregiver and PWD. Risk factors of PDG and caregiver burden were identified using multivariate regression, within which PDG and caregiver burden scores were jointly included as two separate dependent variables.ResultsWe recruited 394 caregivers with a mean age of 53.0 years (SD 10.7), majority were Chinese (86.6%), children caregivers (86.3%), and primary caregivers (70.8%). In the regression analyses, we identified three risk factors which were shared by both PDG and caregiver burden (later stage of dementia, behavioral problems in PWD, and primary caregiving role) and three other risk factors which were unique to PDG alone (younger age of PWD, lower educational attainment of caregivers, and spousal caregiver).ConclusionsThe different risk factor profiles evidence a distinction between PDG and caregiver burden. They may possibly be distilled into a framework to direct our approach to PDG interventions, which may include using caregiver burden as an opportunity to initiate conversations on grief, exploring the various aspects of losses and encouraging adaptive coping.

Niveau de détresse psychologique et de fardeau perçu chez les conjoints de femmes atteintes d’un cancer du sein

Breast cancer is a chronic disease that affects both patients and their caregivers. Spouses, in particular, will generally assume the role of primary caregiver and experience significant physical, social, economic and emotional stress. In the face of cancer, being the spouse of a patient is synonymous with unmet psychosocial needs and a new role assignment, that of a primary caregiver. In addition, cancer confronts spouses with fear of partner loss. This leads to a set of adverse consequences such as depression, anxiety, uncertainty, stress, etc. Several studies have shown that breast cancer reduces the quality of life of patients’ spouses and increases their emotional distress, their psychosocial needs, and their responsibilities within the family. Spouses may live a complex powerful emotional experience, which is equal to or greater than that experienced by patients during the diagnosis and treatment process. These multiple solicitations contribute to the heavy symptom burden. Therefore, in the context of breast cancer, identifying vulnerable spouses and providing them with appropriate support would help ensure better adherence to the care of their wives at different stages of the disease.

Bringing the Real World Into Developmental Science: A Commentary on Weber, Fernald, and Diop (2017).

This article examines the parent intervention program evaluated by Weber etal. (2017) and argues that there are scientific and ethical problems with such intervention efforts in applied developmental science. Scientifically, these programs rely on data from a small and narrow sample of the world's population; assume the existence of fixed developmental pathways; and pit scientific knowledge against indigenous knowledge. The authors question the critical role of talk as solely providing the rich cognitive stimulation important to school success, and the critical role of primary caregivers as teachers of children's verbal competency. Ethically, these programs do not sufficiently explore how an intervention in one aspect of child care will affect the community's culturally organized patterns of child care.

Bereaved Caregivers to Patients With High-Grade Glioma: A Qualitative Explorative Study.

The disease and treatment trajectory of patients with high-grade glioma is a burdensome period for the patients' closest relatives who become informal caregivers. Caregivers experiencing this demanding shift in role are at risk of developing symptoms such as depression. Few studies have explored the needs and experiences of bereaved caregivers, and there is lack of evidence-based practice. This study explores the perspectives of newly bereaved caregivers to patients with high-grade glioma on end-of-life caregiving and bereavement. This qualitative exploratory study was composed of individual semistructured telephone interviews with bereaved caregivers (n = 8) to patients with high-grade glioma who deceased during participation in the mixed-methods Neuro-oncological Rehabilitation study. A thematic analysis was conducted following Braun and Clarke's guidelines. Four main themes were identified concerning the bereavement experience: (1) late-stage caregiving is comprehensive and taxing, (2) releasing the responsibility of the primary caregiving role, (3) feelings of grief and relief, and (4) suggestions for clinical practice. Late-stage caregiving is a difficult and challenging experience at the end of an already burdening treatment trajectory. Caregivers prefer to actively share responsibility and practical tasks with professionals, family, and friends. The bereaved caregivers' key areas of concern indicate the need for additional research in advance care planning within neuro-oncology caregiving to establish evidence-based practice guidelines and recommendations.

The Essential Role of Primary Caregiver in Early Detection of Familial Hypercholesterolemia and Cardiovascular Prevention.

Familial hypercholesterolemia (FH) is a worldwide common autosomal inherited condition associated with premature cardiovascular diseases, both in men and in women (World frequency has been recently estimated to be as high as 1:250). Identifying FH cases early in life could represent a cornerstone to prevent fatal events in adult's life. Pediatricians are well positioned to evaluate the familial cardiovascular risk factors among their young patients, to make a diagnosis and to perform familial screening. The goal of this paper is therefore to emphasize the recognition of this genetic condition at a younger age and to initiate both familial screening and a safe treatment. Prevention of cardiovascular disease starts at an early age in all children, but it may save lives in FH patients.

Determining the primary caregiver for disabled older adults in Mainland China: spouse priority and living arrangements

AbstractResearchers have widely discussed the key role of having a spouse and proximity of family in the provision of elder care, but the relationship between kinship and living arrangements in primary caregiver selection has not been fully examined. Based on the 2011–2012 Chinese Longitudinal Healthy Longevity Survey, multinomial logistic regression models were built to test the effects of kinship and living arrangements on primary caregiver selection. This study found that spouses were most likely to assume the primary caregiver role, even when the elderly couple lived with their adult children. This study suggests that more social services should be provided to support spousal caregivers, and that the different needs of spouse and adult child caregivers should be considered in interventions.Practitioner points Be mindful that the prevalence of non co‐residence between aging parents and adult children affects the provision of elder care Support programmes should be developed for spousal caregivers Be aware of the different needs of spouse and adult child caregivers when designing family interventions for them

Primary Caregivers in a Network Context.

Caregiving to individuals affected by Alzheimer's disease and related dementia (ADRD) is a family-systems process where tasks are distributed between multiple caregivers in a network. We evaluate the extent to which multiple network members nominate one another as filling primary caregiver (PCG) roles and factors associated with nomination. Data come from the Caregiving Roles and Expectations Networks project, which aimed to characterize the caregiving networks of families affected by ADRD. All persons affected by ADRD were either full-time residents in residential care facilities or community-dwelling adult day-care participants. Generalized Poisson regression was used to model the count of incoming PCG nominations of each network member. On average, there were multiple network members identified as PCGs across different network contexts. Network members who were perceived to perform essential caregiving tasks, such as making decisions on behalf of and spending time with the care recipient, received more primary caregiving nominations from their network peers, adjusting for personal attributes, and the context of care. Having multiple PCGs in a network may result in lack of consensus in who fills those roles, potentially putting families at risk for interpersonal conflicts. Future work aimed at intervention development should fully assess the social contexts surrounding caregiving processes in order to better understand how network composition might impact outcomes.

Caregivers satisfaction with intensive care unit services in tertiary care hospital.

Background:Caregivers play a vital role in intensive care unit (ICU) because critically ill patients cannot make their own decisions due to their illness. Measuring family satisfaction on quality of ICU care is essential. Hence, the current paper aimed to measure the family caregiver satisfaction in ICU care in tertiary care hospital.Methods:The study adopted descriptive research design conducted from July 2016 to January 2017 at ICU in Emergency and Trauma Care center. A total number of 60 consented caregivers were recruited. An Internationally validated Family satisfaction survey questionnaire (FS) was used. Continuous variables of the data were described by mean standard deviation and categorical variables by frequency (%). Normality of the continuous variables was checked by Shapiro–Wilk test. Kruskal–Wallis test was used to compare the average FS score between the groups.Results:Results showed that caregiver age was ranged between 25 and 66 years with mean age 40 (±19). Among the caregivers, 75% were male and 25% were female of which 75% were married and remaining were unmarried. Around half of the caregivers (48.3) were educated up to primary or secondary and 26.7% had higher secondary education level. About 46.7% involved in manual laborers and 36.7% were working in the private sector. Family members had taken primary caregiving role without prior experience (81.7%) at ICU. Almost 95% of the caregivers were highly satisfied with ICU care and only 5% were not satisfied.Conclusion:Majority of caregivers are satisfied with ICU care. However, adequate measures need to be taken to ensure the complete satisfaction among caregivers at ICU.

Relationship of Parental Stress Levels and Selected Child Cognitive Processes of Grade Two Students

Parents experience various stressors as they perform their roles in the family and these may influence child development. The study aimed to determine the relationship of parenting stress levels on selected cognitive processes of Grade Two students in public and private schools. Parent-respondents accomplished a questionnaire to gather socio-demographic data and parental stress levels while three psychometric tests were used to assess visual immediate memory, learning, and working memory of the Grade Two students. Descriptive and inferential statistics were used for data analysis. Findings show that 62% of the parents had low parental stress levels. More than half of the students had high scores for visual immediate memory, more than three-fourths were in the high range for learning, and more than half was in the low range for working memory. Educational attainment, career, household income, income source, and primary caregiver role had significant relationships to parental stress levels. Parental stress levels did not significantly affect the cognitive processes and the relationships were generally negative. Parents should continuously practice effective stress management and coping responses to prevent stress spillover to their children.

Support groups for Alzheimer’s caregivers: Creating our own space in uncertain times

ABSTRACTOlder men are often excluded from family caregiving research despite the steady increase in the number of husbands assuming primary caregiving roles. We explored perceptions of older, male caregivers’ experiences with caring for a wife with Alzheimer’s Disease (AD) and examined what aspects of the support group were beneficial. Our qualitative research methods invited six caregivers ranging in age from 74 to 85 years to narratively construct their perspectives on caring for their wives with Alzheimer’s Disease and benefits of participation in an all-male support group. Thematic analyses revealed caregivers faced several transitions. “Losses related to their personal relationships with their wife, family, and self,” captured as loss of golden years. The second area, benefits and improvements of support groups, were captured in the following theme: “creating our own space,” which included two sub-themes: “releasing our frustration” and “developing coping strategies.” There was also “Gendered experience of caregiving.” This study revealed that male caregivers benefited from the support and company of other men in similar caregiving situations. Results from this study have implications for health care professionals for the development of psychosocial educational groups aimed at providing support to male caregivers.

Ideological dilemmas in accounts of primary caregiving fathers in Australian news media

Norms and expectations regarding fathers are changing, with fathers now expected to be more involved in caregiving. One consequence of this is an increase in fathers who assume the primary caregiving role. The study reported in this paper involved a discourse analysis of 176 Australian newspaper articles that focused on primary caregiving fathers. Three recurring interpretative repertoires pertaining to primary caregiving fathers were identified, suggesting contradictory and dilemmatic accounts of this role. These were: (1) advocating for primary caregiving fathers, (2) comparing the past and present, and (3) barriers to father involvement. Overall, when describing the “typical” father who provides primary care, the articles promoted the evolving cultural ideal of fathers as involved and nurturing caregivers, however they nonetheless justified continued gendered inequalities in parenting. Therefore, despite claims that new models of fathering are encouraged and promoted in western cultures, the analysis demonstrates that media accounts construct and reproduce hegemonic masculinity. The paper concludes by suggesting that a more critical lens should be applied to claims of support for greater father involvement, as despite structural and social support in favour of involved fathering, this support is comprised of contradictory elements that simultaneously undermine this emerging ideal.

Experiences of Inner-City Fathers of Children With Chronic Illness.

We aim to explore the experiences of fathers from inner-city families caring for children affected by chronic health conditions or disabilities. A systematic scoping review was conducted using the Arskey and O'Malley framework. Fourteen of the 5114 articles were included in the full review and were qualitatively evaluated in terms of stressors, resources, perception, coping, and adaptation according to the Double ABCX model. Stressors included financial strain and health care access barriers. Resources ranging from immediate to extended family members depended on ethnicity. Fathers' perceptions of their primary caregiver roles depended on ethnicity in the context of cultural gender norms. While inner-city fathers desired information about their children's health, some were uncomfortable asking physicians. They had a higher risk for coping difficulties and maladaptation, including depression. We highlight a need for pediatricians to advocate for additional resources to provide comprehensive care for inner-city fathers caring for their children with chronic health conditions or disabilities.

Constructions of Primary Caregiving Fathers in Popular Parenting Texts

Expectations and norms of fatherhood are evolving, with fathers now expected to be more involved in childcare. These changes have made it possible for a growing number of fathers to assume a primary caregiving role. Catering to these fathers, a growing number of books have been published focusing on primary caregiving fathers. The present article reports on a discourse analysis of nine such books. Four interpretative repertoires were identified, suggesting very specific ways in which it is deemed appropriate for men to take on primary caregiving. The findings emphasize the need to pay ongoing attention to popular parenting texts since, despite claims they encourage and support involved models of fathering, the books present and reproduce potentially limited accounts of fathers who are primary caregivers. As such, the findings highlight the importance of being critical of claims that fatherhood is evolving, given such evolution may be mitigated by ongoing normativity with regard to fathering.

Estrés, Sobrecarga Y Ansiedad En Cuidadoras Primarias De Niños Que Padecen Leucemia En Hidalgo

Leukemia is the type of cancer that occurs more in children and teenagers. The chronic-degenerative nature of the disease makes that the minors need someone responsible for their care known as informal primary caregiver. Generally, the primary caregiver role, who attends all the patient needs, it’s acquired by the father or mother of the minor. The demands of that labor can bring negative physiological and psychosocial consequences. Objective: to determine the relationship and the difference by sex and disease phase of the minor in the levels of stress, burden and anxiety of primary caregivers of boys and girls with leukemia in Hidalgo. Method: through a non-probability sampling of volunteers subjects were selected N = 50 female primary caregivers. To measure the variables they were used the following instruments: Perceived Stress Scale, Zarit Caregiver Burden Scale and Beck Anxiety Inventory. Results: showed positive and statistically significant correlations between anxiety-burden and stress-anxiety. It also found that the caregivers of boys have higher levels of anxiety than caregivers of girls and caregivers of patients in active phase of the disease have higher burden compared with caregivers of patients in remission phase. Conclusion: there are some high levels of stress, burden and anxiety in caregivers. There exists correlation between anxiety-stress and burdenanxiety. The caregivers of boys have more anxiety. The caregivers of children in active phase of the disease present more burden.

Evaluation Of The Overload Of Care In Families Of Psychiatric Patients In Psychosocial Care Center

Introduction: The burden of care in family refers to the weight caused by the primary caregiver role to psychiatric patients and the difficulties encountered in performing this function in daily life.
 Objectives: Assessing the objective and subjective overload of family members who live with the reality of psychiatric disorder in a child day-care psychosocial care center. Methods: Cross-sectional study, descriptive-exploratory, of quantitative approach, with non-probabilistic samples of accidental type with 80 families of psychiatric patients held in a Psychosocial Care Center. For overload evaluation, the subscales "B" and "D" of the Family Overload Rating Scale (FBIS-BR) were used.
 Results: The study was conducted with 80 families of psychiatric patients. The average age of female caregivers was 39,6 years old, and 40,7 years old for male caregivers, with female predominance (87,5%) compared to men (12,5%), with low education for both genres. Family caregivers presented high objective burden due to excessive demand attention (p<0,001), heteroaggressiveness (p<0,001) and perplexing behavior of psychiatric patients regarding the supervision of problematic behaviors (p<0,001). The items on the impact on the family's daily routine have not helped to generate objective overload for the family members. On subjective overload, it was clear to observe familiar members with high degree of disturbance in all the dimensions assessed (p < 0,001).
 Conclusion: The high degree of care overload observed in family members indicates the need to develop contacts with the family of the psychiatric patient to answer questions, offer support and assistance to the family caregiver.
 Keywords: Caregivers. Patients. Mental Health Services.

Barriers and Facilitators to Caring for a Child with Cerebral Palsy in Rural Communities of the Western Cape, South Africa

ABSTRACTFamily members of children with disabilities have become more involved in their children’s care and have adopted the role of primary caregiver. Due to the varying degrees of the condition, children with cerebral palsy (CP) often require greater involvement from their caregivers. Fifteen caregivers for children with CP residing in rural communities of the Western Cape, South Africa, were interviewed to explore the barriers and facilitators that they encountered. Thematic analysis revealed that some progress has been made in terms of service provision to caregivers from previously disadvantaged communities. However, a lot more needs to be done to help caregivers with children with CP. Social support, increased public awareness of the causes of disability, financial support by the government and access to disability friendly services, such as respite care, special education and transport-related services, have been identified as essential. It is important to take this into consideration when designing future interventions in order to provide caregivers with support and services necessary to make an impact.

Changes in Health Perceptions among Older Grandparents Raising Adolescent Grandchildren

ABSTRACTThis research study explores health perceptions before and after becoming a primary caregiver among older grandparents raising adolescent grandchildren. Qualitative, in-depth face-to-face interviews were conducted with grandparents age 40 and older (N = 15) who were raising adolescent grandchildren age 12 and older. Most grandparents were female, had some college education, White/Non-Hispanic, were married, had an average age of 65 years, and reported never attending a grandparent support group. Before assuming the primary caregiver role, older grandparents described their physical health as good, filled with physical activity, and reasonably free of health conditions. After entering the primary caregiving role, older grandparents of adolescents described functional restrictions and visible changes in physical health requiring intensive medical interventions. In terms of mental health, older grandparent caregivers experienced anxiety, worry, depression, sadness, and frustration. These findings highlight the complex caregiving circumstances encountered by older grandparents raising adolescents and the need for health education and policy development to increase comprehensive supportive services targeting this population.

Psychosocial Challenges Associated with Caregiving in the Context of Pediatric HIV in Rural Eastern Cape.

While survival among human immunodeficiency virus (HIV)-infected children has increased due to combination antiretroviral therapy, many children remain vulnerable to the adverse effects of poverty and family disruptions as a result of the loss of one or both biological parents to acquired immunodeficiency syndrome. The aim of this qualitative study was to develop an understanding of the psychosocial challenges experienced by caregivers caring for a child with perinatally acquired HIV. A series of interviews were conducted with 44 HIV-positive and -negative primary caregivers of HIV+ children. Data were analyzed through interpretative phenomenological analysis using NVivo8 software. The findings suggest that caregiving is compromised by inadequate, financial resources and single-headed households where mainly grandparents assume the role of primary caregivers of HIV+ children. HIV remains a stigmatized illness that weakens support networks, as well as timeous and free accessibility to healthcare. This has a negative impact on the mental health of caregivers, with the majority of women in the study displaying symptoms of depression. The findings highlight the contextual challenges of caregiving in the presence of HIV, which impacts negatively on social ecology of the families. The need for interventions to enhance resilience and coping in families confronted with HIV is indicated.

Primary Care Program in Prison: A Review of the Literature.

Nurses take on the role of primary caregiver in the prison setting, as they are usually the first to approach the prisoner, and they govern access to all aspects of the health care system. The aim of this review was to assess the effects of the use of the primary care model in a correctional setting. Major literature databases relevant to the specified areas were searched for studies published from 2004 to 2013. Three studies reported some implications for prisoners, nursing practice, and the correctional facility, as generated by using the primary care model in the prison setting. The primary care model can improve relevant outcomes for health management in the prison setting.