Exploring the needs and coping strategies of family caregivers taking care of dying patients at home: a field study
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ABSTRACT:
SUBMITTER: Zhang X
PROVIDER: S-EPMC10714660 | biostudies-literature | 2023 Jan
REPOSITORIES: biostudies-literature
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Project description:ObjectiveTo explore the coping strategies of caregivers of children who have survived paediatric cancer in Jordan.Materials and methodsThis study used a cross-sectional survey design and convenient sampling. The sample included 102 caregivers of children who have survived cancer, and outcome measures included the Arabic-translated Brief COPE, and caregiver and child demographic and condition questionnaire. Data analyses included descriptive statistics, analysis of frequencies, Spearman-rank order correlations and linear regression.ResultsCaregivers most frequently used religion coping (mean=6.42, SD=1.85), followed by acceptance (mean=5.95, SD=1.96) and planning (mean=5.05, SD=1.94). The least used coping strategies were humour (mean=2.98, SD=1.24) and behavioural disengagement as coping strategies (mean=3.01, SD=1.42). Having a female child predicted more self-distraction utilisation (β=0.265, p=0.007).ConclusionCaregivers of children who have survived cancer in Jordan frequently use passive coping strategies like religion and acceptance coping to overcome daily life stressors. Caregivers might benefit from psychosocial occupational therapy interventions to support their engagement in more active or problem-focused coping strategies.
| S-EPMC11015291 | biostudies-literature
Project description:ObjectivesThis study aimed to identify coping strategies used by family caregivers of patients with schizophrenia and their determinants.MethodsThis was a descriptive correlational study. Participants were 225 family caregivers of patients with schizophrenia who were referred to the psychiatric clinic at one large teaching referral hospital in Iran. They were selected through purposive sampling method. Data collection tools were demographic and clinical data form, the Zarit Burden Interview (ZBI) and the Family Coping Questionnaire (FCQ).ResultsThe score of caregiver burden was 65.14 ± 9.17. Of 225 family caregivers, 23.11% used an avoiding coping strategy. There was a significant relationship between caregiver burden and coping strategies (P < 0.001). The regression model showed that adaptive coping strategies were significantly associated with some demographic characteristics including age, education level, gender, employment status, losing the job because of caregiving responsibilities, perceived income adequacy, duration of illness, duration of caregiving and caregiver burden (P < 0.05).ConclusionFamily caregivers of patients with schizophrenia experience a high level of burden, which can put them at risk of using maladaptive coping strategies. Mental health professionals should plan programs that support both family caregivers and patients in clinical and community settings.
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Project description:BackgroundDementia palliative care is increasingly subject of research and practice improvement initiatives.AimTo assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers.DesignCombined analysis of eight studies with bereaved family caregivers' evaluations 2005-2019.Setting/participantsFamily caregivers of nursing home residents with dementia in the Netherlands (n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region.ResultsThe mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052-0.244; adjusted 0.170 points 95% CI, 0.055-0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of -0.175 points (95% CI, -0.291 to -0.058) per year increment. With adjustment, the trend was not significant (-0.070 EOLD-CAD total score points, 95% CI, -0.205 to 0.065) and only the EOLD-CAD subscale 'Well being' decreased.ConclusionWe identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia.
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Project description:IntroductionIn pediatric education, caregivers are increasingly involved to share their perspective. Yet, an in-depth understanding of the perspective-taking process between medical students and caregivers is lacking. This study explored: 1) Which strategies do medical students use to take a caregiver's perspective and which facilitators and constraints do they perceive? 2) Which strategies do caregivers use to share their perspective with students? and 3) How do students' perspective-taking strategies relate to caregivers' perspective-sharing strategies?MethodsIn an online lesson: two caregivers of pediatric patients, shared their story with 27 fourth-year Dutch medical students. After the session, students undertook an assignment where they individually reflected on how they took perspective. Students' reflections were collected via audio recordings. Caregivers were individually interviewed. Data were analyzed through thematic and cross-case analysis.ResultsStudents used eight perspective-taking strategies, in various combinations. Students used inferential strategies, where they made inferences from available information, and cultivating strategies, where they attempted to elicit more information about the caregiver. Students perceived individual-, contextual- and caregiver-related facilitators and constraints for taking perspective. Caregivers shared their perspective by adopting multiple strategies to share their story and create a trusting learning environment. We visualized connections between students' perspective-taking strategies, facilitators/constraints, and caregivers' perspective-sharing strategies.DiscussionBy combining data from both perspective-takers (students) and perspective-sharers (caregivers), this study provides a foundation for future research to study perspective-taking between students and patients in an educational context. On a practical level, our findings provide tools for students, patients, and educators to enhance perspective-taking processes.
| S-EPMC10558030 | biostudies-literature
Project description:ObjectiveThe primary aim of this study is to elucidate the spiritual needs encountered by family members who intricately engage in the progression of illness within the palliative care framework, thus assuming the paramount responsibility of caregiving.MethodsThis study was approved by the Institutional Review Board and Ethics Committee of the University of Health Sciences İzmir Tepecik Training and Research Hospital (17/01/2022-2022/01-16). The research was designed as a prospective study. It was conducted through face-to-face, interactive interviews with family caregivers of patients admitted to the palliative care unit at Tepecik Training and Research Hospital between April 2022 and December 2022. The interviews were performed using a phenomenological approach and structured in a question-and-answer format. Data from twenty family caregivers were analyzed using thematic analysis. The questions were specifically designed to explore the psychological processes, spirituality, conceptions of God, meaning-making, and coping strategies of the family caregivers.ResultsCaregivers experienced various psychological and emotional states progressing through stages of denial, anger, and acceptance. Spirituality emerged as a critical coping mechanism providing strength and meaning amidst caregiving challenges. Caregivers' perceptions of God varied from loving to punitive, influencing their interpretations of suffering and caregiving roles.ConclusionThis study underscores the importance of integrating spiritual support into palliative care practices. Recognizing and addressing caregivers' spiritual needs is crucial for enhancing their well-being and improving the quality of palliative care delivery. Training healthcare professionals in spiritual care and implementing targeted interventions can effectively support family caregivers in their caregiving journey.
| S-EPMC11542245 | biostudies-literature
Project description:BackgroundFamily caregivers of patients at the end of life often experience care-related burden. To prevent caregiver burden and to enhance the capacity to provide care it is important to have insight in their support needs. The purpose of this study was to identify profiles of family caregivers who provide care to patients at the end of life at home.MethodsA Q-methodological study was conducted in which family caregivers ranked 40 statements on support needs and experiences with caregiving. Thereafter they explained their ranking in an interview. By-person factor analysis was used to analyse the rankings and qualitative data was used to support the choice of profiles. A set of 41 family caregivers with a variety on background characteristics who currently or recently provided care for someone at the end of life at home were included.ResultsFour distinct profiles were identified; profile (1) those who want appreciation and an assigned contact person; profile (2) was bipolar. The positive pole (2+) comprised those who have supportive relationships and the negative pole (2-) those who wish for supportive relationships; profile (3) those who want information and practical support, and profile (4) those who need time off. The profiles reflect different support needs and experiences with caregiving.ConclusionsFamily caregivers of patients at the end of life have varying support needs and one size does not fit all. The profiles are relevant for healthcare professionals and volunteers in palliative care as they provide an overview of the main support needs among family caregivers of patients near the end of life. This knowledge could help healthcare professionals giving support.
| S-EPMC7175554 | biostudies-literature
Project description:BackgroundMental disorders significantly contribute to the global disease burden and are a leading cause of disability worldwide. 57.8 million adults deal with some form of mental condition. Family caregivers play a crucial role in supporting people living with mental illness (PLWMI), but their own well-being is often impacted. When a family member has a mental illness, caregivers often feel solely responsible for various aspects, significantly increasing the burden of caregiving. This study aimed to explore and describe the needs of family caregivers of people living with mental illness in Lobatse.MethodsThe study used an exploratory, descriptive, contextual qualitative design to explore and describe the needs of family members caring for relatives diagnosed with mental illnesses. A purposive sampling technique was used to select the family caregivers who participated in the study. Data was collected through in-depth individual face-to-face interviews and analysed using a content analysis approach. The study's trustworthiness was ensured by establishing credibility, transferability, authenticity, confirmability, and dependability. Approval to conduct the study was obtained from the relevant authorities, and written informed consent was secured from all participants.ResultsSeveral key needs of PLWMI family caregivers were identified: the need for interventions to assist family caregivers, the need for informational support, and the need for perceptible support.ConclusionCaring for a family member with mental illness at home is highly demanding and has negative effects on the caregivers' financial, social, and emotional well-being. The study uncovered the specific needs of family caregivers. These findings underscore the importance of developing guidelines to improve the well-being of family caregivers and provide them with necessary support.
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Project description:INTRODUCTION:The need for specialized care, particularly enteral nutritional therapy in community settings is now increasing with implications for both patients and primary care providers. More research is needed to identify the needs of patients and primary caregivers. The study aimed to explore the perceived support needs regarding the provision of home-based enteral nutritional therapy among critically ill adult patients and family caregivers in the KwaZulu-Natal Province of South Africa. METHODS:A qualitative study of purposely selected adult patients on homebased enteral nutritional therapy and family caregivers was conducted in a district hospital, a community health centre, two primary health care clinics and selected households in the KwaZulu-Natal Province, South Africa. Semi-structured individual interviews were conducted between June and September 2018 and the content analysis approach was used to analyse data. RESULTS:Two major themes and five subthemes emerged from the results of the interviews. The major themes concerned socioeconomic and psychosocial support needs related to the provision of home-based enteral nutritional therapy. Subthemes included the need for financial assistance, need for enteral nutrition products and supplementary supplies, need for infrastructure for continuity of care, and psychological support needs. CONCLUSION:Results of this study confirm the need for developing strategies adapted to a South African context and yonder to meet patients' and family caregivers' needs with regard to nutritional services. More research on the identification of needs through monitoring and evaluation of the implementation of nutritional guidelines is needed, particularly in the district hospital and primary health care (PHC) setting.
| S-EPMC7015406 | biostudies-literature
Project description:BackgroundFamily caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers' experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time.MethodsAn ethnographic study comprising observations and interviews. A purposive sample of 10 family caregivers and 10 relatives was recruited within a rural area in the north of Portugal. Data were collected between 2014 and 16 using serial participant observations (n = 33) and in-depth interviews (n = 11). Thematic content analysis was used to analyse the data.ResultsFive overarching themes were yielded: (1) provision of care towards independence and prevention of complications; (2) perceived and (3) unknown caregiver needs; (4) caregivers' physical and emotional impairments; and (5) balancing limited time. An imbalance towards any one of these aspects may lead to reduced capability and performance of the family caregiver, with increased risk of complications for their relative. However, with balance, family caregivers embraced their role over time.ConclusionsThese findings enhance understanding around the needs of family caregivers, which are optimally met when professionals and family caregivers work together with a collaborative approach over time. Patients and their families should be seen as equal partners. Family-focused care would enhance nursing practice in this context and this research can inform nursing training and educational programs.
| S-EPMC7249372 | biostudies-literature
Project description:ObjectiveTo investigate the care needs of dying patients and their family caregivers in hospice and palliative care in mainland China.MethodsA search for English and Chinese quantitative and qualitative studies was performed using the following English databases: PubMed (Medline), CINAHL and PsycINFO, as well as Chinese databases: SinoMed and CNKI. The records were independently screened by two reviewers and critiqued using Joanna Briggs Institute Critical Appraisal tools. All quantitative data were transformed into qualitative data, which were converted into textual descriptions. Due to the diversity of included studies, a three-step analysis was performed: narrative summary, thematic analysis and presentation of integrated results in a narrative form. The qualitative findings were pooled using the meta-aggregation approach.ResultsThe literature search identified 2964 papers after removing duplicates, from which 18 were included (9 quantitative and 9 qualitative studies). All studies were conducted in mainland China. Quantitative studies involved cross-sectional surveys, and qualitative studies involved interviews for data collection. Two synthesised results of patients' needs were identified, including needs to be comfortable and experience a good death. Another two synthesised results of family caregivers' needs included needs to care for and improve the quality of life of patients, and to care for themselves well.ConclusionThis study identified that patients and family caregivers have an increasing demand for professional care at the end of life. Professionals, especially nurses, should enact a patients' demand-centred practice to overcome the challenges of organisation, education, emotion and communication to provide high-quality end-of-life care.
| S-EPMC8573656 | biostudies-literature