Search results for: family caregiver

Authors: Adriane Amend, Leidiene Ferreira Santos, Daniella Pires Nunes

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The experience of assuming or caring for older persons dependents by relatives is a complex task that encompasses or affective involvement, the demand for technical activities and or psychological support. It would be necessary to understand the situations related to the caregiver, the person and the environment, which help the family difficulty, as a caregiver to lead this role. Objective: To identify the forces that drive and restrict the care process of family caregivers of the older adults. Method: Descriptive and exploratory research, with a qualitative approach, which has as a reference the Force Field Theory. Five family caregivers of older adult’s dependents residing in the city of Palmas, Tocantins, Brazil will participate. The data were collected from December 2021 to February 2022, through a semi-structured individual interview, and submitted to content analysis. Results: As forces that drive or process of caring for family caregivers were: the account of compassionate attitudes and patience of the caregiver (I); to the collaboration of the other person to the care and to the body structure of the same (Other); and the supports of other people not cared for and structural, such as adaptations in the room, read and bathroom, as in the presence of air conditioners (Environment). Among the restrictive forces of care we mention difficulties in delegating care to another person, or stress of care and other personal demands (I); imposition of the older person about care and e a transfer from bed to hip (Other); e lack of accessibility of the house and absence of air conditioning and hospital bed (Environment). Conclusion: The results show that there are driving forces with the caregiver's attitude and feelings, a bond as an idol and support for the caregiver and the environment. On the other hand, conflicting ties, absence of physical structure and daily and continuous care shifts, can significantly compromise well-being or the cycle of older adult, caregiver and care.

Keywords: caregivers, frail elderly, perception, geriatric nursing

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Authors: Tulika Bhattacharyya, Suhita Chopra Chatterjee

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Family caregivers are vital in providing physical and emotional care to the aged. Providing care to aged involves physical as well as psycho-socio-economic challenges, compels the caregiver to fit in manifold roles, feel overburdened; which in turn requires them to change their priorities in life. The study conducted on family caregivers of the hospitalized elderly explores caregiver’s burden using Zarit Burden Scale (ZBS). The data has been collected from two randomly selected Multispecialty Hospitals in Kolkata (India), after obtaining ethical clearance from the Institutional Review Board of both the hospitals. The predictors of burden were also assessed using interview schedules. Among fifty-seven caregivers who participated in the study, caregiver’s burden was identified among thirty respondents with twenty-six having mild to moderate burden and four having moderate to severe burden. Majority of the caregivers were found to be female, reflecting the gendered nature of caregiving. Family caregivers spent more than six hours per day on caregiving, which severely disturbed their work-life including loss of job. The study revealed that the caregivers’ marital status, family structure, academic qualification, occupation and time spent on caregiving are related to family caregivers’ burden. The burden of care giving was accentuated by poor access to information, counseling, and lack of supportive services. The paper concludes by indicating the need for greater state interventions for caregivers.

Keywords: caregivers burden, family caregiving, hospitalized elderly, elderly in Kolkata, India, Zarit Burden Scale

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Authors: Amit Zriker, Anat Freund

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The aim of the study was to conduct a thorough examination into the multiple complexities of bringing a foreign caregiver into the home to care for older adults in the Haredi society, by relating to the perspectives of the older adult and his family members. Research questions were: What is the meaning of bringing a foreign caregiver into the home in Haredi society, from the point of view of the older adult’s family members, and what are the implications of these meanings in the context of developing social policies and interventions? The current study was a qualitative-phenomenological study, which relates to “the lived experience” of those involved in the studied phenomenon. In the framework of the study, the participants included 15 adult Haredi sons and daughters of elderly impaired parents who receive homecare from a foreign caregiver. Data collection was carried out using in-depth, semi-structured interviews; the interview guidelines are comprised of the following content worlds: the meanings of aging in Haredi families; the decision-making process in relation to providing home care assistance for elderly impaired parents; making decisions regarding bringing a foreign caregiver into the home to care for an elderly parent; the daily routine after bringing in a foreign caregiver; bringing in a foreign caregiver vs. the society and vs. the Haredi establishment; and more. The issue of bringing a foreign caregiver into the home in the context of a faith-based society has received only scant and partial research attention to date. Nevertheless, in light of the growing elderly population in the Haredi society in Israel, and in closed, faith-based societies, in general; there is a growing need to bring foreign caregivers into the home as a possible solution to the “aging-in-place” problem in these societies. The separatist nature, and the collectivist and faith-based lifestyle of the Haredi society present unique challenges and needs in the process of employing a foreign caregiver. Moreover, the foreign caregiver also brings his/her own cultural world to the encounter, meaning, this process involves the elderly impaired individual, his/her family members, as well as the foreign caregiver. Therefore, it is important to understand their attitudes, perceptions and interactions, in order to create a good fit among all involved parties. The innovation and uniqueness of the current study is in its in-depth exploration of a phenomenon through an emotional-cultural lens. The study findings also contribute to the creation of social policy in the field of nursing, which will be adapted and culturally sensitive to Haredi society, and other faith-based societies.

Keywords: culturally-sensitive intervention, faith-based society, foreign caregiver, Haredi society

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Authors: Yeasir Arafat Alve, Nazmun Nahar, Salma BeguM

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Introduction / Rationale: Caregivers of stroke survivors have experienced financial, emotional, physical and mental anxiety and have influence of family bonding and social customs, where 80% of caregivers were women and majority of the patients were cared for by immediate family members for example a spouse, son/daughter, son-in-law, daughter-in-law, siblings and they are significantly feel burden as a caregiver. In Bangladeshi context, there has a limitation of knowledge about the level of caregiver burden. This study could be suggested the health professional to focus on the care giving stress to provide a better support to them and also it will be advisable to provide equivalent services for caregivers and their families. Objectives: The study finds out the socio-demographic image of caregivers of stroke survivors in Bangladesh as well as discovers the level of burden of caregiver of stroke survivor in relation to general strain, isolation, disappointment, emotional involvement and environment. The study will find out the association between level of burden among caregivers and onset of stroke of survivors & duration of care giving. As well as to determine the association between level of burden among caregivers and caregiver’s age, gender, occupation and caregiver’s relationship with stroke survivors. Method / Approach: The study is a non experimental cross-sectional study design where 151 participants were selected through purposive comprehensive sampling. Data were selected from occupational therapy outdoor and stroke rehab unit, CRP (Savar & Mirpur) where using the Caregiver Burden Scale (a structured questionnaire) with face to face interview. Results: Most of the caregivers (78.8%) of stroke survivors faced moderate level of burden in general strain (37.7%), isolation (27.2%) but in case of disappointment (60.3%) feel higher burden and lower burden in emotional involvement (9.9%) and environment (0.7%). Caregiver burden level was significantly associated with caregivers’ age (P=0.006), sex (P=0.002), occupation (p= 0.04), relationship with stroke survivors (P=0.02), care giving duration (P=0.000), care giving hours (P=0.009), and onset of stroke (P=0.000) of stroke survivors. Conclusion: The study findings revealed that most of the caregivers faced moderate burden where no environmental burden for them, this is possibly in case of Bangladeshi culture where people hospitable. Through this study, it was also found that there is a possibility to have the higher burden. Finally, it is being also suggested that appropriate advice and support may preserve care giving which eventually enables the survivors to live a longer and more fulfilling life in the community.

Keywords: caregiver, level of caregiver burden, stroke survivor, stroke rehab unit

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Authors: Fenni Sim

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Background: The application of systemic family therapy approaches to community health cases have not gathered traction. In National Kidney Foundation, Singapore, the belief is that community support has great potential in helping End Stage Renal Failure (ESRF) patients manage the demands of their treatment regime, whether Hemodialysis (HD) or Peritoneal Dialysis(PD) and sustain them on the treatment. However, the current community support does not include family interventions and is largely nursing based. Although nursing support is well provided to patients, and their family members in issues related to treatment and compliance, complex family issues and dynamics arising from caregiver strain or pre-dialysis relationship strain might deter efforts in managing the challenges of the treatment. Objective: The objective of the study is to understand the potential scope of work provided by a social worker who is trained in systemic family therapy and the effects of these interventions. Methodology: 3 families on HD and 3 families on PD who have been receiving family intervention for the past 6 months would be chosen for the study. A qualitative interview would be conducted to review the effectiveness for the family. Scales such as SCORE-15, PHQ-9, and Zarit Burden were used to measure family functioning, depression, and caregiver’s burden for the families. Results: The research is still in preliminary phase. Conclusion: The study highlights the importance of family intervention for families with multiple stressors on different treatment modalities who might have different needs and challenges. Nursing support needs to be complemented with family-based support to manage complex family issues in order to achieve better health outcomes and improved family coping.

Keywords: complementing nursing support, end stage renal failure, healthcare, systemic approaches

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Authors: A. Uludağ, F. G. Tufekci, N. Ceviz

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Aim: The research has been carried out in order to evaluate caregiver burden, life satisfaction and received social support level of the parents whose children have congenital heart disease; to examine the relationship between the social supports received by them and caregiver burden and life satisfaction. Material and Method: The research which is descriptive and which is searching a relationship has been carried out between the dates June 7, 2012- June 30, 2014, in Erzurum Ataturk University Research and Application Hospital, Department of Pediatrics and Children Cardiology Polyclinic. In the research, it was collaborated with the parents (N = 157) who accepted to participate in, of children who were between the ages of 3 months- 12 years. While gathering the data, a questionnaire, Zarit Caregiver Burden, Life Satisfaction and Social Support Scales have been used. The statistics of the data acquired has been produced by using percentage distribution, mean, and variance and correlation analysis. Ethical principles are followed in the research. Results: In the research, caregiver burden, life satisfaction and social support level received from family (p < 0.05), have been determined higher in the parents whose children have serious congenital heart disease than that of parents whose children have slight disease and social support received from friends has been found lower. It has been determined that there is a strong relation (p < 0.001) through negative direction between both social support levels and caregiver burden of parents; and that there is a strong relation (p < 0.001) through positive direction between both support levels and life satisfaction. Conclusion: That Social Support is in a strong relation with Caregiver Burden through a negative direction and a strong relation with Life Satisfaction through positive direction in parents of all the children who have congenital heart disease requires social support systems to be reinforced. Parents can be led or guided so as to prompt social support systems more.

Keywords: congenital heart disease, child, parents, caregiver burden, life satisfaction, social support

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Authors: Chaliya Wamaloon, Malee Chaisaena, Nusara Prasertsri

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Informal caregivers providing home-based palliative and end-of-life (EOL) care to people with advanced cancer is needed, however, there has not been develop caregiver skills for the EOL in cancer patients. The aim of this research was to study the model development of caregiver skills for the EOL in cancer patients. Mixed methods research was conducted in 3 phases. All subjects were in Ubon Rathchathani Cancer Hospital including 30 EOL cancer patient caregivers, 30 EOL cancer patients, and 111 health care professionals who provided care for the EOL cancer patients and 30 EOL target participants who had been trained to be cancer patient caregivers. The research tools were questionnaires, semi structured interviews, and caregiver skills questionnaires. Data were analyzed by using percentage, mean, standard deviation, pair t-test, and content analysis. The result from this study showed the model development of caregiver skills for cancer patients consisted of 9 domains skills: 1. monitoring, 2. interpreting, 3. making decisions, 4. taking action, 5. making adjustments, 6. providing hands-on care, 7. accessing resources, 8. working together with the ill patients, and 9. navigating the healthcare system. The model composed of skills development curriculum for cancer patient caregivers, Manual of palliative care for caregivers, diary of health care records for cancer patients, and the evaluation model of development of caregiver skills for EOL cancer patients. The results of the evaluation in the development model of caregiver skills for EOL cancer patients showed that the caregivers were satisfied with the model of development for caregiver skills at a high level. The comparison of the caregiver skills before and after obtaining the development of caregivers skills revealed that it improved at a statistically significant level (p < 0.05).

Keywords: caregiver, caregiver skills, cancer patients, end of life

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Authors: Guler Duru Asiret, Cemile Kutmec Yilmaz, Gulcan Bagcivan, Tugce Turten Kaymaz

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This descriptive study was conducted to determine the relationship between caregiver burden and life satisfaction who give home care to elderly individuals. The sample was recruited from the internal medicine unit and palliative unit of a state hospital located in Turkey on June 2016-2017. The study sample consisted of 231 primary caregiver family member, who met the eligibility criteria and agreed to participate in the study. The inclusion criteria were as follows: inpatient’s caregiver, primary caregiver for at least 3 months, at least 18 years of age, no communication problem or mental disorder. Data were gathered using an Information Form prepared by the researchers based on previous literature, the Zarit Burden Interview (ZBI), and the Satisfaction with Life Scale (SWLS). The data were analyzed using IBM SPSS Statistics software version 20.0 (SPSS, Chicago, IL). The descriptive characteristics of the participant were analyzed using number, percentage, mean and standard deviation. The suitability of normal distribution of scale scores was analyzed using Kolmogorov-Smirnov and Shapiro-Wilk test. Relationships between scales were analyzed using Spearman’s rank-correlation coefficient. P values less than 0.05 were considered to be significant. The average age of the caregivers was 50.11±13.46 (mean±SD) years. Of the caregivers, 76.2% were women, 45% were primary school graduates, 89.2% were married, 38.1% were the daughters of their patients. Among these, 52.4% evaluated their income level to be good. Of them, 53.6% had been giving care less than 2 years. The patients’ average age was 77.1±8.0 years. Of the patients, 55.8% were women, 56.3% were illeterate, 70.6% were married, and 97.4% had at least one chronic disease. The mean Zarit Burden Interview score was 35.4±1.5 and the Satisfaction with Life Scale score was 20.6±6.8. A negative relationship was found between the patients’ score average on the ZBI, and on the SWLS (r= -0.438, p=0.000). The present study determined that the caregivers have a moderate caregiver burden and the life satisfaction. And the life satisfaction of caregivers decreased as their caregiver burden increase. In line with the results obtained from the research, it is recommended that to increase the effectiveness of discharge training, to arrange training and counseling programs for caregivers to cope with the problems they experienced, to monitor the caregivers at regular intervals and to provide necessary institutional support.

Keywords: caregiver burden, family caregivers, nurses, satisfaction

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Authors: Bowen Li, Dan Shu, Shiguang Pang, Li Wang, Qian Liu

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Background: Every year, approximately 429,000 adolescents aged 0-19 are diagnosed with cancer worldwide. The diagnosis brings about substantial psychological pressure and caregiving responsibilities for family members and impacts the families significantly. Family resilience has been found to reduce caregiver distress and can also foster post-traumatic growth in cancer survivors. However, current research on family resilience in childhood cancer mainly focuses on individual caregiver resilience and child adaptation, with less attention given to categorizing family resilience among caregivers of children with cancer. Method: A total of 292 caregivers of children with cancer were recruited from four tertiary hospitals in central China from July 2022 to March 2024. This study was approved by the ethics committee, and participants provided informed consent, with the option to withdraw at any time. The Family Resilience Assessment Scale was used to measure family resilience among caregivers of children with cancer. The Quality of Life scale-family, The Perceived Social Support Scale, and The Connor-Davidson Resilience Scale were used to measure potential influencing factors. This study used latent profile analysis (LPA) to identify latent categories of family resilience among caregivers of children with cancer. Binary logistic regression was used to analyze the influencing factors of family resilience. Results: The results reveal two distinct categories: "high family resilience" and "low family resilience." "Low family resilience" group accounts for 85.96% of the total while "high family resilience" group is 14.04%. "High family resilience" scores higher across all dimensions compared to "low family resilience". Within-group comparisons reveals that "family communication and problem-solving" and "empowering the meaning of adversity" received the highest scores, while "utilizing social and economic resources" scores the lowest. "Maintaining a positive attitude" scores similarly high to "family communication and problem-solving" in the high family resilience group, whereas it scores similarly low to "utilizing social and economic resources" in the low family resilience group. In single-factor analysis, residence, number of siblings, caregiver's education level, resilience, social support, quality of life, physical well-being and psychological well-being showed significant difference between two categories. In binary logistic regression analysis, households with only one child are more likely to exhibit low family resilience, whereas high personal resilience is associated with a high level of family resilience. Conclusion: Most families with children suffering from cancer require strengthened family resilience. Support for utilizing socio-economic resources is important for both high and low family resilience families. Single-child families and caregivers with lower resilience require more attention. These findings imply the development of targeted interventions to enhance family resilience among families with children of cancer. Future studies could involve children and other family members for a comprehensive understanding of family resilience. Longitudinal studies are necessary to explore the dynamic changes in family resilience throughout the cancer journey.

Keywords: cancer children, caregivers, family resilience, latent profile analysis

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Authors: Marcio Emilio Dos Santos, Kelly C. F. Dos Santos

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Caregivers of patients diagnosed with ASD are subjected to high stress situations due to the complexity and multiple levels of daily activities that require the organization of events, behaviors and socioemotional situations, such as immediate decision making and in public spaces. The cognitive and emotional requirement needed to fulfill this caregiving role exceeds the regular cultural process that adults receive in their process of preparation for conjugal and parental life. Therefore, in many cases, caregivers present a high level of overload, poor capacity to organize and mediate the development process of the child or patient about their care. Aims: Improvement in the cognitive and emotional capacities related to the caregiver function, allowing the reduction of the overload, the feeling of incompetence and the characteristic level of stress, developing a more organized conduct and decision making more oriented towards the objectives and procedural gains necessary for the integral development of the patient with diagnosis of ASD. Method: The study was performed with 20 relatives, randomly selected from a total of 140 patients attended. The family members were submitted to the Wechsler Adult Intelligence Scale III intelligence test and the Family assessment Management Measure (FaMM) questionnaire as a previous evaluation. Therapeutic activity in a small group of family members or caregivers, with weekly frequency, with a minimum workload of two hours, using the Feuerstein Instrumental Enrichment Cognitive Development Program - Feuerstein Instrumental Enrichment for ten months. Reapplication of the previous tests to verify the gains obtained. Results and Discussion: There is a change in the level of caregiver overload, improvement in the results of the Family assessment Management Measure and highlight to the increase of performance in the cognitive aspects related to problem solving, planned behavior and management of behavioral crises. These results lead to the discussion of the need to invest in the integrated care of patients and their caregivers, mainly by enabling cognitively to deal with the complexity of Autism. This goes beyond the simple therapeutic orientation about adjustments in family and school routines. The study showed that when the caregiver improves his/her capacity of management, the results of the treatment are potentiated and there is a reduction of the level of the caregiver's overload. Importantly, the study was performed for only ten months and the number of family members attended in the study (n = 20) needs to be expanded to have statistical strength.

Keywords: caregiver overload, cognitive development program ASD caregivers, feuerstein instrumental enrichment, family assessment management measure

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Authors: Ruttana Phetsitong, Patama Vapattanawong, Malee Sunpuwan, Marc Voelker

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The majority of care for older people at home in Thai society falls upon caregivers resulting in caregiver’s mental health problem. Beyond individual characteristics, household factors might have a profound effect on the caregiver’s mental health. But reliable data capturing this at the household level have been limited to date. The objectives of the present study were to explore the levels of Thai caregiver’s mental health and to investigate the factors affecting the mental health at household level. Data were obtained from the 2011 National Survey of Thai Older Persons conducted by the National Statistical Office of Thailand. Caregiver’s mental health was measured by using the 15- items-short version of the Thai Mental Health Indicator (TMHI-15) developed by the Department of Mental Health, the Ministry of Public Health. Multivariate logistic regression models were used to explore the impact of potential factors on caregiver’s mental health. The THMI-15 produced an overall average caregiver mental health score of 30.9 out of 45 (SD 5.3). The score can be categorized into good (34.02-45), fair (27.01-34), and poor (0-27). Duration of care for older people, household wealth, and functional dependency of the older people significantly predicted total caregiver’s mental health. Household economic factor was key in predicting better mental health. Compared to those poorest households, the adjusted effect of the fifth quintile household wealth was high (OR=2.34; 95%CI=1.47-3.73). The findings of this study provide a fuller picture to a better understanding of the level and factors that cause the mental health of Thai caregivers. Health care providers and policymakers should consider these factors when designing interventions aimed at alleviating caregiver’s psychological burden when provided care for older people at home.

Keywords: caregiver’s mental health, household, older people, Thailand

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Authors: Elzbieta Sikorska-Simmons

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Advanced dementia is a progressive terminal brain disease that is accompanied by a syndrome of difficult to manage symptoms and complications that eventually lead to death. The management of advanced dementia poses major challenges to family caregivers who act as patient health care proxies in making medical treatment decisions. Little is known, however, about how they manage advanced dementia and how their treatment choices influence the quality of patient life. This prospective qualitative study examines the key medical treatment decisions that family caregivers make while managing advanced dementia. The term ‘family caregiver’ refers to a relative or a friend who is primarily responsible for managing patient’s medical care needs and legally authorized to give informed consent for medical treatments. Medical decision-making implies a process of choosing between treatment options in response to patient’s medical care needs (e.g., worsening comorbid conditions, pain, infections, acute medical events). Family caregivers engage in this process when they actively seek treatments or follow recommendations by healthcare professionals. Better understanding of medical decision-making from the family caregiver perspective is needed to design interventions that maximize the quality of patient life and limit inappropriate treatments. Data were collected in three waves of semi-structured interviews with 20 family caregivers for patients with advanced dementia. A purposive sample of 20 family caregivers was recruited from a senior care center in Central Florida. The qualitative personal interviews were conducted by the author in 4-5 months intervals. The ethical approval for the study was obtained prior to the data collection. Advanced dementia was operationalized as stage five or higher on the Global Deterioration Scale (GDS) (i.e., starting with the GDS score of five, patients are no longer able survive without assistance due to major cognitive and functional impairments). Information about patients’ GDS scores was obtained from the Center’s Medical Director, who had an in-depth knowledge of each patient’s health and medical treatment history. All interviews were audiotaped and transcribed verbatim. The qualitative data analysis was conducted to answer the following research questions: 1) what treatment decisions do family caregivers make while managing the symptoms of advanced dementia and 2) how do these treatment decisions influence the quality of patient life? To validate the results, the author asked each participating family caregiver if the summarized findings accurately captured his/her experiences. The identified medical decisions ranged from seeking specialist medical care to end-of-life care. The most common decisions were related to arranging medical appointments, medication management, seeking treatments for pain and other symptoms, nursing home placement, and accessing community-based healthcare services. The most challenging and consequential decisions were related to the management of acute complications, hospitalizations, and discontinuation of treatments. Decisions that had the greatest impact on the quality of patient life and survival were triggered by traumatic falls, worsening psychiatric symptoms, and aspiration pneumonia. The study findings have important implications for geriatric nurses in the context of patient/caregiver-centered dementia care. Innovative nursing approaches are needed to support family caregivers to effectively manage medical care needs of patients with advanced dementia.

Keywords: advanced dementia, family caregiver, medical decision-making, symptom management

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Authors: Hsiao-Wen Tsai

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Motor vehicle accident is the first cause of head injury in the world; severe head injury cases may cause conscious disturbance and death. This is a report about a case of a young adult patient suffering from motor vehicle accident leading to severe head injury who passed through three time surgical procedures, and his mother (who is the informal caregiver). This case was followed from 28th January to 15th February 2011 by using Gordon’s 11 functional health patterns. Patient’s cognitive-perceptual and self-perception-self-concept patterns were altered. Anxiety was also noted on his informal caregiver due to patients’ condition. During the intensive care period, maintaining patient’s vital signs and cerebral perfusion pressure were essential to avoid secondary neuronal injury. Multi-sensory stimulation, caring accompanying, supporting, listening and encouraging patient’s family involved in patient care were very important to reduce informal caregiver anxiety. Finally, the patient consciousness improved from GCS 4 to GCS 11 before discharging from ICU. Patient’s primary informal caregiver, his mother, also showed anxiety improvement. This is was successful case with traumatic brain injury recovered from coma.

Keywords: anxiety, multi-sensory stimulation, reduce intracranial adaptive capacity, traumatic brain injury

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Authors: Budsarin Padwang, Darunee Jongudomkarn, Thawan Nieamsup, Autchareeya Patumwan, Rutja Phuphaibul

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In Northern Thailand, a pilot study by the qualitative data, on caring for family members with chronic illness/bedridden based on in-depth interviews of the 12 elderly caregivers in family was carried out during November to December 2017. There are four families that living with three generations in the family. This report is part of a larger study of 'The intergenerational contract of the family in long-term care for older members' to understand the situation and context related to the research questions. Content analysis was obtained and the results revealed as followings. 1) No choice and no freedom: most caregivers were asked by their family members to do the care giving roles because of various appropriate reasons and they could not refuse and felt like having no freedom. 2) ‘Katanyu’ to the parents: The Thai ideology of making merit by taking care of parents was beliefs to do the best in their caregiver roles. 3) The family commitments: The issues of family caring and relationships were the key value of keeping family members to take care of older members with chronic illness/bedridden. The preliminary findings can be beneficial for other regions and will lead to in-depth explore to answer the research questions of the larger study in the future.

Keywords: intergenerational contract, long term care, older members, generational family

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Authors: Nuraisyah H. Zulkifley, Suriani Ismail, Rosliza Abdul Manaf, Poh Y. Lim

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Taking care of a person with dementia (PWD) is one of the most problematic and challenging caregiving situations. Without proper support, caregiver would need to deal with the impact of caregiving that would lead to caregiver burden. One of the most common tools used to measure caregiver burden among caregivers of PWD is Zarit Burden Interview (ZBI). A systematic review has been conducted through searching Medline, Science Direct, Cochrane Library, Embase, PsycINFO, ProQuest, and Scopus databases to identify relevant articles that elaborate on intervention and outcomes on ZBI among informal caregiver of PWD. The articles were searched in October 2019 with no restriction on language or publication status. Inclusion criteria are randomized control trial (RCT) studies, participants were informal caregivers of PWD, ZBI measured as outcomes, and intervention group was compared with no intervention control or usual care control. Two authors reviewed and extracted the data from the full-text articles. From a total of 344 records, nine studies were selected and included in this narrative review, and eight studies were included in the meta-analysis. The types of interventions that were implemented to ease caregiver burden are psychoeducation, physical activity, psychosocial, and computer-based intervention. The meta-analysis showed that there is a significant difference in the mean score of ZBI (p = 0.006) in the intervention group compared to the control group after implementation of intervention. In conclusion, interventions such as psychoeducation, psychosocial, and physical activity can help to reduce the burden experiencing by the caregivers of PWD.

Keywords: dementia, informal caregiver, randomized control trial, Zarit burden interview

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Authors: Cemile Kütmeç Yilmaz, Güler Duru Asiret, Gulcan Bagcivan

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The aim of this study was to evaluate the reliability and validity of the Turkish version of the Carer’s Assessment of Satisfaction Index (CASI-TR). The study was conducted between the dates of June 2016 and September 2017 at the Training and Research Hospital of Aksaray University with the caregiving family members of the inpatients with chronic diseases. For this study, the sample size was calculated as at least 10 individuals for each item (item number (30)X10=300). The study sample included 300 caregiving family members, who provided primer care for at least three months for a patient (who had at least one chronic disease and received inpatient treatment in general internal medicine and palliative care units). Data were collected by using a demographic questionnaire and CASI-TR. Descriptive statistics, and psychometric tests were used for the data analysis. Of those caregivers, 76.7% were female, 86.3% were 65 years old and below, 43.7% were primary school graduates, 87% were married, 86% were not working, 66.3% were housewives, and 60.3% defined their income status as having an income covering one’s expenses. Care recipients often had problems in terms of walking, sleep, balance, feeding and urinary incontinence. The Cronbach Alpha value calculated for the CASI-TR (30 items) was 0,949. Internal consistency coefficients calculated for subscales were: 0.922 for the subscale of ‘caregiver satisfaction related to care recipient’, 0.875 for the subscale of ‘caregiver satisfaction related to themselves’, and 0.723 for the subscale of ‘dynamics of interpersonal relations’. Factor analysis revealed that three factors accounted for 57.67% of the total variance, with an eigenvalue of >1. assessed in terms of significance, we saw that the items came together in a significant manner. The factor load of the items were between 0.311 and 0.874. These results show that the CASI-TR is a valid and reliable scale. The adoption of the translated CASI in Turkey is found reliable and valid to assessing the satisfaction of caregivers. CASI-TR can be used easily in clinics or house visits by nurses and other health professionals for assessing caregiver satisfaction from caregiving.

Keywords: carer’s assessment of satisfaction index, caregiver, validity, reliability

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Authors: Cecilia Fagerstrom, Solve Elmstahl, Lena S. Wranker

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The conditions of increased morbidity in an aging population cause the need for family care to become more common at an advanced age. The role of family caregivers may well last for a long time but may also change over time, from being caregivers to being non-caregivers or vice versa. Although demands associated with family caring change as individuals enter into, engage with, and exit from this role, the evidence regarding the impact of family caregiving transitions on the health of older carers is still limited. This study comprised individuals (n=2294, 60+years) from the southern part of Sweden included in the project Swedish National study of Aging and Care. Caregiving transitions are discussed in the categories: enter, exit, and continuing during a six-year period. Individuals who exited caregiving during the time were older than those who continued or entered into the role of caregiving. At the six-year follow-up, caregivers who were continuing or had exited caregiving were more often worried about their own health compared to baseline. Resembling findings were not found in those who entered caregiving. Family caregiving transitions of exiting, entering or continuing had no effect on the individuals’ functional, physical and mental health expect for participants who entered in caregiving. For them, entering the role of family caregiving was associated with an improvement in physical health during the six years follow up period. Conclusion: Although the health impact of different caregiving transitions in late life does not differ, individual conditions and health at baseline are important parameters to take into consideration to improve long-term health in family caregivers.

Keywords: family caregiving, health, old age, transition

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Authors: Elzbieta Sikorska-Simmons

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Dementia is a progressive terminal disease. Despite this recognition, research shows that most family caregivers do not know it, and it is unclear how this knowledge affects the quality of patient care. The aim of this qualitative study of 20 family caregivers for patients with advanced dementia is to examine how the caregiver's knowledge about dementia affects the quality of patient care in the context of healthcare decision-making, advanced care planning, and access to adequate support systems. Knowledge about dementia implies family caregivers' understanding of dementia trajectories, common symptoms/complications, and alternative treatment options (e.g., comfort feeding versus tube feeding). Data were collected in semi-structured interviews with 20 family caregivers. The interviews were conducted in person by the author and designed to elicit rich descriptions of family caregivers' experiences with healthcare decision-making and the management of common symptoms/complications of end-stage dementia as patient healthcare proxies. The study findings suggest that caregivers who recognize that dementia is a terminal disease are less likely to opt for life-extending treatments during the advanced stages. They are also more likely to seek palliative/hospice care, and consequently, they are better able to avoid unnecessary hospitalizations or medical procedures. For example, those who know that dementia is a terminal disease tend to opt for "comfort feeding" rather than "tube feeding" in managing the swallowing difficulties that accompany advanced dementia. In the context of advance care planning, family caregivers who know that dementia is a terminal disease tend to have more meaningful advance directives (e.g., Power of Attorney and Do Not Resuscitate orders). They are better prepared to anticipate common problems and pursue treatments that foster the best quality of patient life and care. Greater knowledge about advanced dementia helps them make more informed decisions that focus on enhancing the quality of patient life rather than just survival. In addition, those who know that dementia is a terminal disease are more likely to establish adequate support systems to help them cope with the complex demands of caregiving. For example, they are more likely to seek dementia-oriented primary care programs that offer house visits or respite services. Based on the study findings, knowledge about dementia as a terminal disease is critical in the optimal management of patient care needs and the establishment of adequate support systems. More research is needed to better understand what caregivers need to know to better prepare them for the complex demands of dementia caregiving.

Keywords: dementia education, family caregiver, management of dementia, quality of care

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Authors: Yu-Ching Liu

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Background: Family numbers usually take responsibility for taking care of their elderly relatives, especially parents. Caring for a patient with chronic diseases is a stressful experience, which makes carers suffer physical and mental health stress, difficulties maintaining family relationships and issues in participating in the labor market, which may lower their quality of life (QoL). The issue of providing care to relatives with chronic illness has been widely explored in Taiwan, but most studies focus on the need for full-time caregivers. Objective: The main goal of this study was to examine the topic of working carers involved in the decision-making process of LTC services and to explore what affects working carers considering when they choose the care services for their disabled, elderly relatives. Method: A total of 7 working caregivers were enrolled in this study. A face-to-face and semi-structured in-depth qualitative interview study were conducted to explore the caregivers' perspectives. Results: Working carers have a positive experience of using LTC service because it allows them to kill two birds with one stone, continue employment, and care for an elderly disabled relative. However, working carers have still been struggling to find friendly community-based LTC services. There were no longer available community services that could be used with the illness condition of patients getting worse. As such, patients have to be cared for at home, which might increase the caregiver burden of carers. Conclusion: Working family caregivers suffer from heavy physical and psychological burdens as they not only have to maintain their employment but care for elderly disabled relatives; however, the current support provided is insufficient. The design of services should consider working carers' employment situation and need rather than the only caring situation of patients at home.

Keywords: family caregiver, Long-term care, work-life balance, decision-making

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Authors: Jirapan Khruesarn, Wimwipa Boonklin

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Background: Currently, Thailand has an aging population. In 2017, the elderly population was over 11.14 million. There will be an increase in the number of elderly people, 8.39 million, some people grumble to themselves and have conflicts with their offspring or those close to them. It is a source of stress. Mental health promotion should be given to the elderly in order to cope with these changes. Due to the family characteristics of Thai society, these family members will act as caregivers for the elderly. Therefore, a group-counseling program based on Personnel-Centered Theory for Elderly Caregivers in Mental Health Promotion for Older People in Na Kaeo Municipality, Kau Ka District, Lampang Province, has been developed to compare the elderly care behavior before and after the participation. Methods: This research was study for 20 elderly' caregiver: Those aimed to compare the before and after use of group program for caregiver to promoting for the elderly by the following methods: Step 1 Establish a framework for evaluating elderly care behaviors and develop a group counseling program for promote mental health for elderly on: 1) Body 2) Willpower 3) Social and community management and 4) Organizing learning process. Step 2 Assessing an Elderly Care Behaviors by using "The behavior assessment on caring for the elderly" and assessing the mental health power level of the elderly and follow the counseling program 9 times and compare of the elderly care behaviors before and after joined a group program, and compare of mental health level of caregiver attends a group program. Results: This study is developing a group counseling program to promoting for the resilience quotient in elderly people that the results of the study could be summarized as follows: 1) Before the elderly's caregivers join a group counseling program: Mental health promotion behaviors of the elderly were at the high level of (3.32), and after: were at the high level of (3.44). 2) Before the elderly's caregiver attends a group counseling program: the mental health level of the elderly the mean score was (47.85 percent), and the standard deviation was (0.21 percent) and after. The elderly had a higher score of (51.45 percent) In summary, after the elderly caregivers joined the group, the elderly are higher in all aspects promote mental health for elderly and the statistically significance at the 0.05, It shows that programs are fit for personal and community condition in promoting the mental health of the elderly because this theory has the idea that: Humans have the ability to use their intelligence to solve problems or make decisions effectively, And member of group counseling program have ventured and express grievances that the counselor is a facilitator who focuses on personal development by building relationships among people. In other words, the factors contributing to higher levels of elderly care behaviors is group counseling, that isn't a hypothetical process but focus on building relationships that are based on mutual trust and Unconditional acceptance.

Keywords: group counseling base on person-centered theory, elderly person, resilience quotient: RQ, caregiver

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Authors: Lina Vyas

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Gender gap, unfortunately, is still prevalent in the workplace around the world. In most countries, women are less likely than men to participate in the workplace. They earn considerably less than men for doing the same work and are generally expected to prioritize family obligations over work responsibilities. Women often face more conflicts while balancing the increasingly normalized roles of both worker and mother. True gender equality in the workplace is still a long way off. In Hong Kong, no less is this true. Despite the fact that female students are outnumbered by males at universities, only 55% of women are active participants in the labour market, and for those in the workforce, the gender pay gap is 22%. This structural inequality also exacerbates the issues of confronting biases at work for choosing to be employed as a mother, as well as reinforces the societal expectation of women to be the primary caregiver at home. These pressures are likely to add up for women and contribute to increased levels of work-life conflict, which may be a further barrier for the inclusion of women into the workplace. Family-friendly policies have long been thought to be an alleviator of work-life conflict through helping employees balance the demands in both work and family. Particularly, for women, this could be a facilitator of their integration into the workplace. However, little research has looked at how family-friendly policies may also have a gender differential in effect, as opposed to traditional notions of having universal efficacy. This study investigates both how and how much the gender dimension impacts work-family conflict. In addition to disentangling the reasons for gender gaps existing in work-life conflict for women, this study highlights what can be done at an organizational level to alleviate these conflicts. Most importantly, the policies recommendations derived from this study serve as an avenue for more active participation for women in the workplace and can be considered as a pathway for promoting greater gender egalitarianism and fairness in a traditionally gender-segregated society.

Keywords: family-friendly policies, Hong Kong, work-family conflict, workplace

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Authors: Ankur Kapur, Moosath Vasudevan

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This movie review looks at the depiction of mental illness in popular cinema, using the movie A Beautiful Mind as a case study. It tries to understand cinema and media from a clinical psychology perspective in terms of the portrayal of symptoms and caregiver support. The review aims to analyze the portrayal of schizophrenia in the book and the movie ‘A Beautiful Mind’ on Professor John Nash. It will analyze the differences in portrayal of schizophrenia, under different media and the creative applications of the author, directors and actors in depicting the disorder as closely as it is understood in Clinical Psychology. The differences would be studied for romanticisation of symptoms in the book and the movie. Even within a medium (only the movie), verbal and non-verbal cues of the disorder will be compared for the depiction of schizophrenia. The study will dwell on the comparative description of how the caregivers coped with the patient and his illness. For this, the study will understand it through the lens of Bowen’s Family Systems Theory.

Keywords: caregiver, communication, media, systems theory

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Authors: Ekhlas Al Gamal, Tony Long

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The impact on the parents of caring for a child with cancer was intense and wide-ranging. A high level of distress and low level or resilience remains during treatment. Even completion of treatment can be a time of increased anxiety and stress for parents particularly with worries about recurrence or relapse. The purpose of this study to examine the associations between parental satisfactions with healthcare provided for their child and the impact of being a caregiver for a child with cancer. Methodology: A descriptive, correlational and cross-sectional design was employed using data from Arabic versions of self-report questionnaires which were administered to 113 parents with children with cancer in Jordan during 2015. Findings: the result indicated that Family relationship functioning was ranked as the highest (better functioning) domain while daily activities were ranked as the lowest (poorer functioning) domain. Parents were generally satisfied with the health care provided, but their emotional needs were not met adequately. Parents with better social functioning were more satisfied in all areas of healthcare satisfaction other than emotional needs and communication. Parents who had a child with more emotional and behavioural problems were more likely to experience a negative impact on the family and a poor level of family functioning. Conclusion and Significance: Nurses and other health care providers should emphasis on family centred approach rather than child centred approach.

Keywords: parents, children, cancer, Jordan

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Authors: Yeaji Seok, Myung Kyung Lee

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Background: Even if patients survive after a stroke, stroke patients may experience disability in mobility, sensation, cognition, and speech and language. Stroke patients require rehabilitation for functional recovery and daily life for a considerable time. During rehabilitation, the role of caregivers is important. However, the stroke patients’ quality of life may deteriorate due to family caregivers’ non-preparedness and increased role burden. Purpose: To investigate the prediction of caregivers' preparedness and role burden on stroke patients’ quality of life. Methods: The target population was stroke patients who were hospitalized for rehabilitation and their family care providers. A total of 153 patient-family caregiver dyads were recruited from June to August 2021. Data were collected from self-reported questionnaires and analyzed using descriptive statistics, t-tests, chi-squared test, one-way analysis of variance, Pearson’s correlation coefficients, and multiple regression with SPSS statistics 28 programs. Results: Family caregivers’ preparedness affected stroke patients’ mobility (β = .20, p < 0.05) and character (β = -.084, p < 0.05) and production activities (β = -.197, p < 0.05) in quality of life. The role burden of family caregivers affected language skills (β = .310, p<0.05), visual functions (β=-.357, p < 0.05), thinking skills (β = 0.443, p = 0.05), mood conditions (β = 0.565, p < 0.001), family roles (β = -0.361, p < 0.001), and social roles (β = -0.304, p < 0.001), while the caregivers’ burden of performing self-protection negatively affected patients’ social roles (β = .180, p=.048). In addition, caregivers’ role burden of personal life sacrifice affected patients’ mobility (β = .311, p < 0.05), self-care (β =.232, p < 0.05) and energy (β = .239, p < 0.05). Conclusion: This study indicated that family caregivers' preparedness and role burden affected stroke patients’ quality of life. The results of this study suggested that intervention to improve family caregivers’ preparedness and to reduce role burden should be required for quality of life in stroke patients.

Keywords: quality of life, preparedness, role burden, caregivers, stroke

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Authors: Longtao He, Han Wu

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Summary: As the need for elder care increases in China due to a growing aging population and, in particular, rising cancer rates, it becomes increasingly important to also support family caregivers, who are often the main source of care. We used a qualitative meta-synthesis to systematically evaluate and integrate the caregiving experiences of family caregivers of elderly cancer patients as revealed by articles published in Chinese journals. Findings: Nine studies are included in the final analysis. The caregiver experiences they describe are synthesized into three primary themes: care needs, care burden, and care gains, with numerous secondary themes. Besides the findings that seem to align with other findings across cultures, we have highlighted three main discoveries from the synthesis that may be quite specific to the Chinese context: 1. more sub-themes related to specific caregiving skills caregivers of cancer patients; 2. a call for health professionals to improve their communication skills with family caregivers; 3. the important role of filial piety. Applications: Our findings can be used to help health social workers and relevant policymakers in China support family caregivers by identifying the education and training required for caregivers, ways to make the most of potential care gains, and ways to ease care burdens.

Keywords: cancer, Chinese family caregivers, caregiving skills, care burden, care gains, health social work

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Authors: Ana Ferraz, Martim Santos, M. Graça Pereira

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Distress among parents of children with acute lymphoblastic leukemia (ALL) is common during treatment and can persist several years post-diagnosis, impacting the adjustment of children and parents themselves. Current evidence is needed to examine the scope and nature of parental distress in childhood ALL. This review focused on associated variables, predictors, and outcomes of parental distress following their ALL diagnosis of their child. PubMed, Web of Science, and PsycINFO databases were searched for English and Spanish papers published from 1983 to 2021. PRISMA statement was followed, and papers were evaluated through a standardized methodological quality assessment tool (NHLBI). Of the 28 papers included, 16 were evaluated as fair, eight as good, and four as poor. Regarding results, 11 papers reported subgroup differences, and 15 found potential predictors of parental distress, including sociodemographic, psychosocial, psychological, family, health, and ALL-specific variables. Significant correlations were found between parental distress, social support, illness cognitions, and resilience, as well as contradictory results regarding the impact of sociodemographic variables on parental distress. Family cohesion and caregiver burden were associated with distress, and the use of healthy coping strategies was associated with less anxiety. Caregiver strain contributed to distress, and the overall impact of illness positively predicted anxiety in mothers and somatization in fathers. Differences in parental distress were found regarding group risk, time since diagnosis, and treatment phases. Thirteen papers explored the outcomes of parental distress on psychological, family, health, and social/education outcomes. Parental distress was the most important predictor of family strain. Significant correlations were found between parental distress at diagnosis and further psychological adjustment of parents themselves and their children. Most papers reported correlations between parental distress on children’s adjustment and quality of life, although few studies reported no association. Correlations between maternal depression and child participation in education and social life were also found. Longitudinal studies are needed to better understand parental distress and its consequences on health outcomes, in particular. Future interventions should focus mainly on parents on distress reduction and psychological adjustment, both in parents and children over time.

Keywords: childhood acute lymphoblastic leukemia, family, parental distress, psychological adjustment, quality of life

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Authors: Chen Jun

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This study investigates the impact of family involvement, a pivotal factor shaping the management structure of family firms, on the firm’s innovation outputs. The independent variable focuses on the percentage number of family members serving as directors, supervisors and senior management. Our hypothesis suggests that family involvement tends to make management more conservative, thereby increasing the likelihood of impeding innovation investments and resulting in adverse effects on innovation output. Our findings reveal that Chinese family firms with high family involvement exhibit poorer innovation outputs compared to those with lower family involvement. Subsample analyses indicate that this negative influence of family involvement on innovation output is strengthened as the firm faces higher industry competition and a low marketization context. The findings of our paper contribute to the literature on family involvement by empirically illustrating how family involvement hinders innovation efforts and performance in Chinese family firms.

Keywords: family firm, family involvement, firm innovation, Chinese family firm

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Authors: Jonathan Marks, Lauren Katz

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Family firms are a vital component of a country’s stability, prosperity and development. Their sustainability, longevity and continuity are critical. Given the premise that family firms wish to continue the business for the benefit of the family, the family founder / owner is faced with an emotionally charged transition option; either to transfer the family business to a family member or to transfer the firm to a non-family member. The rationale employed by family founders to select non-family members as successors/ executives of choice and the concomitant rationale employed by non-family members to select family firms as employers of choice, has been under-researched in the literature of family business succession planning. This qualitative study used semi-structured interviews to gain access to family firm founders/ owners, non-family successors/ executives and industry experts on family business. The findings indicated that the rationale for family members to select non-family successors/ executives was underpinned by the objective to grow the family firm for the benefit of the family. If non-family members were the most suitable candidates to ensure this outcome, family members were comfortable to employ non-family members. Non- family members, despite the knowledge that benefit lay primarily with family members, chose to work for family firms for personal benefits in terms of wealth, security and close connections. A commonly shared value system was a pre-requisite for all respondents. The research study provides insights from family founders/ owners, non-family successors/ executives, and industry experts on the subject of succession planning outside the family structure.

Keywords: agency theory, family business, institutional logics, non-family successors, Stewardship Theory

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Authors: Jenny Clift, Rebeccah Sokol, LaTricia Mitchell, Nicholas Alexander, Karissa Rusnick

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Aims: This study sought to identify prevalent promotive factors supporting urban adolescent health and wellbeing, per adolescent and caregiver reports. Setting: The research team conducted online surveys with adolescent (n=520) and caregiver (n=73) respondents from a predominately Latinx urban high school. Methodology: A cross-sectional, qualitative study. Analysis: Inductive thematic analysis was used to analyze responses to open-ended questions. -Findings. Adolescent and caregiver respondents identified promotive factors (eight and six, respectively) that encourage adolescent health and well-being. Supportive relationships were the most frequently reported factor among adolescents (68%) and caregivers (55%). Implications: Health promotion interventions among adolescents should consider how to promote relationships to counteract negative social determinants of health (SDH) and promote optimal quality of life.

Keywords: Latinx adolescents, health and wellbeing, social determinants of health, school

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Authors: Ivonne N. Pérez-Sánchez. María L. Rascón- Gasca, Angélica Riveros-Rosas, Rebeca Robles García

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Introduction: Primary caregivers of cancer patients have health problems related to their lack of time, stress, and fiscal strain. Their health problems could affect their patients’ health and also increase the expenses in public health. Aim: To describe self-care and risk behaviors in a sample of Mexican primary caregiver and the relation of these behaviors with emotional distress (caregiver burden, anxiety and depression symptoms), coping and sociodemographic variables. Method: Participated in this study 173 caregivers of a third level reference medical facility (age: M=49.4, SD=13.5) females 78%, males 22%, 57.5% were caregivers of patients with terminal cancer (CPTC), and 40.5% were caregivers of patients on oncology treatment (CPOT). Results: The 75.7% of caregivers reported to have had health problem in last six months as well as several symptoms which were related to emotional distress, these symptoms were more frequently between CPTC and female caregivers. A half (47.3%) of sample reported have had difficulties in caring their health; these difficulties were related to emotional distress and lower coping, more affected caregivers were who attend male patients and CPTC. The 76.8% of caregivers had health problems in last six months, but 26.5% of them waited to search medical care until they were very sick, and 11% didn't do it. Also, more than a half of sample (56.1%) admitted to have risk behaviors as drink alcohol, smoke or overeating for feeling well, these caregivers showed high emotional distress and lower coping. About caregivers healthy behaviors, 80% of them had a hobby; 27.2% do exercise usually and between 12% to 60% did medical checkups (glucose tests, blood pressure and cholesterol tests, eye exams and watched their weight), these caregivers had lower emotional distress and high coping, some variables related health behaviors were: care only one patient or a female patient and be a CPOT, social support, high educational level and experience as a caregiver in past. The half of caregivers were worrying to develop cancer in the future; this idea was 2.5 times more frequent in caregiver with problems to care their health. Conclusions: The results showed a big proportion of caregivers with medical problems. High emotional distress and low coping were related to physical symptoms, risk behaviors, and low self-care; poor self-care was frequently even in caregiver who have chronic illness.

Keywords: cancer, primary caregiver, risk behaviors, self-care

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