Caregiver Coping Research Articles

Coping Factors for Caregivers of Children With Medical Complexity During Hospitalization.

This study aimed to identify coping factors for caregivers of children with medical complexity (CMC) to manage the stressors and experience associated with their child's hospitalization. We conducted semistructured interviews with CMC caregivers over a video-conferencing platform to examine factors that they perceive impact their coping while their children are hospitalized. Interviews were audio-recorded, transcribed, and imported into a qualitative coding software (MAXQDA). Using a modified grounded theory approach, we assigned process and in vivo codes to the transcripts and conducted interpretive analysis to identify themes. Once we reached thematic saturation, we finalized themes by discussing them to achieve group consensus and processed themes through triangulation with our institution's pediatric family advisory council. We interviewed 14 caregivers (11 mothers and 3 fathers) and identified 3 major themes. The factors that contributed to CMC caregiver coping with their child's hospitalizations included caregivers: feeling that they are prioritizing their child's needs over their own, feeling trust in their child's interdisciplinary healthcare team, and feeling their self-care practices are well adjusted to the hospital setting. Our study found 3 coping factors for caregivers of CMC during their child's hospitalization. Development and testing of interventions that enhance these coping practices may better support CMC caregivers during their child's hospitalizations. Potential interventions could include developing structured processes to establish caregiver involvement in their child's hospital care and helping caregivers modify their existing coping mechanisms to the hospital setting.

Qualitative study of the perceived experiences and needs coping of primary caregivers of patients with breast cancer during operation in central China

PurposeThe purpose of this study is to gain an in-depth understanding of the intraoperative waiting period experience and needs response of primary caregivers of patients with breast cancer.MethodUsing a purposive...

Health-related quality of life in Chinese children and adolescents with cancer.

Cancer diagnosis and related treatment can have multiple impacts on children's health-related quality of life (HRQoL). This study aimed to determine profiles of HRQoL in Chinese children and adolescents with cancer based on patient-reported outcomes. This cross-sectional study recruited 310 pediatric patients with cancer (in treatment and survivorship) aged 8-17 years old and their family caregivers from four hospitals in China. The participants were asked to complete the PROMIS Pediatric-25 Profile 2.0, along with a demographic and clinical characteristics questionnaire, fatigue screening item, and an item assessing the family caregiver's coping style. Latent profile analysis was used to identify profiles. Two profiles were identified: Profile 1, "low symptom and high function" (n = 147, 47.4%); and Profile 2, "high symptom and low function" (n = 163, 52.5%). Children reporting ≥3 on the five-point Symptom Distress Scale fatigue screening item were more likely to be in Profile 2 (OR = 1.961; 95% CI: 1.098-3.501). Participants were less likely to be in Profile 2 if they were in survivorship (OR = 0.494; 95% CI: 0.271-0.903), or their caregiver's coping style was identified as facing positively (OR = 0.439; 95% CI: 0.274-0.703). The identified profiles demonstrate the heterogeneity in HRQoL among pediatric patients with cancer, and the importance of supporting caregivers' coping as a means of supporting the child. Knowledge of these profiles can assist clinicians in better identifying and targeting interventions for children with cancer.

Understanding the burden of mental and physical health disorders on families: findings from the Saudi National Mental Health Survey

ObjectiveTo assess prevalence and correlation of factors of family burden associated with mental and physical disorders in the general population of Saudi Arabia.Setting and participantsA secondary analysis of data from...

Assertive behavior in dementia family caregivers: Development and validation of the Caregiving Assertiveness Questionnaire (CAQ)

Dementia family caregivers´ assertiveness may play a significant role in the caregiving stress and coping process, but research analyzing this topic is still scarce. This study presents the psychometric properties of the Caregiving Assertiveness Questionnaire (CAQ) and analyzes the associations between assertiveness and other variables with a relevant role in the caregiving coping process. One hundred and forty-seven family dementia caregivers participated in the study. A three-factor structure (expressing discomfort, facing conflicts and setting limits) was found for the CAQ, which explained a 69.63% of the variance in assertiveness. Significant associations were found between scores in CAQ (total scale and subscales) and variables such as experiential avoidance, cognitive fusion and frequency of leisure. CAQ presents appropriate psychometric characteristics and is a useful assessment tool to take into consideration when designing comprehensive assessment protocols for dementia family caregivers, and designing interventions aimed at helping this population.

How do family caregivers of older adults cope with relationship strain?

Objective Studies of families’ experiences with caregiving to older adults most often focus on overall burden and stress. Yet, caregiving is also a type of relationship, and the onset of caregiving can contribute to relationship strain between care partners. Despite implications for both care partners, little is known about how caregivers cope with caregiving relationship strain. Methods The authors conducted nine focus groups and 8 interviews with a purposeful sample of racially and ethnically diverse family caregivers in Los Angeles. Conventional content analysis was applied to transcripts to identify how caregivers cope with relationship strain. Results Analyses revealed four overall coping approaches to manage relationship strain: (1) Self-Care; (2) Adapting Behaviors, (3) Adapting Feelings and Cognitions, and (4) Help and Support. Selected strategies likely vary by care recipient condition. For example, caregivers for persons living with dementia emphasize adapting their own behaviors and feelings, rather than trying to change their loved one’s behaviors. Conclusions Findings suggest that caregivers cope with relationship strain using both interpersonal tension and care management strategies. We also identified possible variations by care recipient condition and caregiver race and ethnicity. These results suggest a need for interventions focused on caregiver coping should also be tested for effects on relationship strain.

The mediating role of caregiver hope in relations among caregivers’ coping and emotional socialization beliefs in pediatric oncology

Purpose: The purpose of this study is to identify links between caregiver hope, caregiver coping behaviors, and caregivers’ coaching versus dismissing emotion socialization (ES) beliefs in a pediatric cancer sample. Design: Self-report measures. Sample: Caregivers (N = 183, 80.20% mothers; 58.5% white; 32.2% Hispanic) of youth undergoing cancer treatment (51.10% hematological malignancy, 15.30% brain or spinal [CNS] tumor, and 25.14% non-CNS solid tumor) for at least six weeks. Method: We used a series of mediation models to examine links between caregivers’ coping behaviors, hope, and ES beliefs. Findings: Caregivers’ hope significantly mediated a positive relation between caregivers’ coping and their emotion coaching beliefs, as well as an inverse relation between caregivers’ maladaptive coping and their emotion dismissing beliefs. Conclusion: Enhancing caregivers’ hope or adaptive coping may support caregivers’ beliefs during the pediatric cancer experience. Implications for Psychosocial Providers: Our findings support future research to evaluate whether enhancing caregivers’ hope or adaptive coping may help support evidence-based interventions that target ES beliefs and behaviors.

Cancer caregivers at the end-of-life: How much me vs. how much we?

Objective: This study explored cancer caregivers' individual and communal coping through their use of personal and communal pronouns during naturally occurring conversations. Methods: Nurse-home hospice visits involving cancer patients and their partner caregivers were audio recorded and then transcribed. Pronoun use was analyzed using Linguistic Inquiry Word Count (LIWC) software and descriptive statistics compared patient and partner caregivers' pronoun use. Personal and communal pronoun use was examined within six identified topics of caregiver speech: patient medical care, daily life, emotion, criticism/disagreement, relationships with family/friends, and asserting needs. Results: Dyads (N = 76) had an average of 35.8 years in their relationship. Caregivers used proportionately more first-person singular (I-talk) than first-person plural (we-talk). However, they used significantly less I-talk than patients and less I-talk than LIWC measures in naturally occurring speech. Caregivers were most likely to discuss patient medical care (41.9%) and least likely to discuss their own needs (3.8%). Conclusion: Partner caregivers may find it easier to express emotions related to communal stressors, rather than their individual ability to cope with end-of-life caregiving. Innovation: Examining personal and communal pronoun use by partner caregivers during nurse-home hospice visits may provide a more objective measure of caregiver coping than standard self-report measures.

Significance of Post-Traumatic Growth and Mental Health for Coping in Multiple Sclerosis Caregivers.

We investigated the influence of post-traumatic growth (PTG) and mental health (MH) on multiple sclerosis (MS) caregivers' uses of coping strategies and identified biopsychosocial predictors of proactive or reactive coping. The Short Form Health Survey (SF-12), General Health Questionnaire (GHQ-28), Post-Traumatic Growth Inventory (PGI-21), Brief COPE Questionnaire (COPE-28), and Multidimensional Scale of Perceived Social Support (MSPSS) were used to evaluate 209 caregivers. Higher PTG was related to greater use of emotional support, positive reframing, religion, active coping, instrumental support, planning, denial, self-distraction, self-blaming, and venting. Better MH was associated with greater use of acceptance, while behavioral disengagement and self-distraction were associated with poorer MH. The PTG dimensions relating to others and new possibilities, SF-12 dimensions of physical and emotional roles as well as partnership, not living with the patient, and significant others' social support were predictors of proactive coping. Reactive coping was positively predicted by the PTG dimension relating to others, depression, vitality, other than partner relation, and physical role, and negatively predicted by mental health level and emotional role. In summary, higher MH was associated with proactive coping strategies, whereas post-traumatic growth was related to the use of a wide range of proactive coping as well as reactive coping strategies.

PSYCHIATRIC MORBIDITIES AND BURDEN IN CAREGIVERS OF PATIENTS OF OBSESSIVE COMPULSIVE DISORDER

Background: Obsessive–compulsive disorder (OCD) is a chronic mental disorder that can be a source of emotional, financial and/or social burden for family caregivers. Few studies have investigated family caregiving for patients diagnosed with OCD in relation to the coping strategies being used from a theoretical perspective. This study evaluated the burden and coping strategies of family caregivers for people diagnosed with OCD. Methods: A cross-sectional study was conducted, in which 94 participants diagnosed with OCD and their caregivers were surveyed using Burden assessment schedule (BAS) used to measure burden among caregivers of patients of OCD. Results: The mean ages of the patients were 36.03 + 12.03 and the caregivers were 43.28 + 14.76. Only 46.8% of the caregivers were female, compared to 74.5% of the patients who were female. Patients spouses made up half of the caregivers (50%) and parents made up almost a quarter (22%) The average length of the illness was 8.10± 6.60 years, and the average length of the cure was 4.04 ±4.47 years. The mean BAS score for the caregiver was 39.52 ±12.99. The Relationship Between Sociodemographic, Clinical, Quality-of-Life, and Disease Burden of Patients The BAS scores of caregivers who had patients who thought their income was low were significantly higher than those of the other caregivers (p=0.013). Conclusions: Designing strategic interventions for family caregiver coping is necessary to support the unique burdens and coping mechanisms faced by family caregivers of people with OCD.

The processes of stress and coping in informal caregivers of people diagnosed on the schizophrenia spectrum. A longitudinal study

The goal of this study was to analyze the role of stress factors and coping strategies in explaining the burden and depression of family caregivers of people diagnosed with a schizophrenia spectrum disorder through a longitudinal design. An evaluation was made of thirty patients with a diagnosis on the spectrum of schizophrenia and thirty informal caregivers. Participants were assessed at three successive moments: baseline, after 5 months, and after 10 months. A decrease in caregivers´ levels of subjective burden across time was found. At longitudinal level, most of the caregivers’ coping strategies showed a relevant relationship with subjective burden and depression at some assessment time. In addition, subjective burden and depression showed a higher relationship with the patient´s negative symptomatology. At longitudinal level, avoidant and resignation showed a relevant relationship with subjective burden and depression. The changes in the evaluation of the demands that the disorder placed on the caregivers and in their coping strategies suggest the development of a process of adaptation to the disorder by the caregiver.

Stress and Coping Status Among the Caregivers of Psychiatrist Patients

Background: Mental disorder account for 13% global burden of disease which has affected more than 970 million people worldwide in 2017. About 1 in 17 suffers from serious mental illness in worldwide. Therefore, the affected person is dependent on caregiver and their wellbeing is directly related to nature and quality of care provided by caregiver. Caregiver are especially vulnerable as they face complex, high burden care situation resulting in higher caregiver stress. The aim of this study is to determine the level of stress and coping of caregivers of Psychiatric patients. Materials and Methods: This cross sectional study was conducted among 171 caregivers, aged more than 18 years in National Institute of Mental Health (NIMH) Shyamoli, Dhaka. Study period was from 1 January to 31 December 2020. The research participants were selected following the convenient sampling method based on defined selection criteria. A semi-structured questionnaire was developed and the respondents were interviewed face to face individually while maintaining privacy and confidentiality. Result: Distribution of the socio demographic status of the study participants were females74% and male 26%. Their mean age was 40.09(±13.31) years. In educational level 33.9 % of the participants were illiterate, secondary level education up to 21.1%. In occupation housewife 57.9%, service holder 18.7%. Caregiver having 76.6% moderate stress, low stress 21.6% and 1.8% having high perceived stress. Association between stress and coping average, good coping 74.8% and 88.2% had moderate stress respectively. Their significant P value .009(p<0,05). The person’s correlation present between stress and coping was positive. The correlation co-efficient was .06 (p<0.05). So, there was a weak positive correlation between level of stress and coping status. Conclusion: Health care personal may screen the stress level of caregivers and if there is any functional impairment is present, they could proper evaluation and therapeutic intervention.
 KYAMC Journal Vol. 13, No. 04, January 2023: 240-244

Staying Healthy While Caregiving at Home? Risk and Protective Factors for Dysfunctional Coping in Family Caregivers

In Germany, 3.3 million people in need of care are cared for at home. More than half (54%) of informal caregivers estimate their own stress as high or very high [1]. Coping strategies, including dysfunctional ones, are used to cope with stress. These bear the risk of negative health consequences. The aim of this study is to assess the frequency of dysfunctional coping strategies among informal caregivers and to identify protective and risk factors for these unfavorable coping mechanisms. A cross-sectional study with N=961 interviewed informal caregivers in Bavaria was conducted in 2020. Dysfunctional coping strategies (substance use and abandonment/avoidance) were assessed. Additionally, subjective stress, positive aspects of caregiving, caregiving motives, characteristics of the caregiving situation as well as caregivers' cognitive evaluation of the care situation and their subjective assessment of available resources (based on the Transactional Stress Model) were recorded. Descriptive statistics were used to explore the frequency of dysfunctional coping behavior. Linear regressions were run, after statistical precondition testing, to investigate which predictors can be identified for dysfunctional coping. 14.7% of respondents reported using alcohol or other substances at least some of the time in difficult situations, and 47.4% of respondents had given up dealing with the care situation. Subjective caregiver burden (p<0.001), the motive to care out of obligation (p=0.035), and resources for manageability of the caregiving situation rated as insufficient (p=0.029) were identified as risk factors for dysfunctional coping in a significant overall model with medium fit (F (10)=16.776; p<0.001). Dysfunctional coping concerning the stress related to the caregiving situation is not uncommon. The most promising target for intervention is subjective caregiver burden. This is known to be reduced by the use of formal and informal help [2, 3]. However, this requires overcoming the problem of low rates of use of counseling and other support services [4]. Newer digital promising approaches to this are being developed [5, 6].

The Association Between Caregiver Coping and Youth Clinic Attendance and Health-related Quality of Life in Pediatric Sickle Cell Disease.

Caregivers of youth with sickle cell disease (SCD) influence the youth disease management and psychosocial outcomes. Effective caregiver coping is important for improving disease management and outcomes since caregivers often report high disease-related parenting stress. This study characterizes caregiver coping and examines its relation to youth clinic nonattendance and health-related quality of life (HRQOL). Participants were 63 youth with SCD and their caregivers. Caregivers completed the Responses to Stress Questionnaire-SCD module to assess primary control engagement (PCE; attempts to change stressors or reactions to stress), secondary control engagement (SCE; strategies to adapt to stress), and disengagement (avoidance) coping. Youth with SCD completed the Pediatric Quality of Life Inventory-SCD module. Medical records were reviewed for the hematology appointment nonattendance rates. Coping factors were significantly different ( F [1.837, 113.924]=86.071, P <0.001); caregivers reported more PCE ( M =2.75, SD =0.66) and SCE ( M =2.78, SD =0.66) than disengagement ( M =1.75, SD =0.54) coping. Responses to short-answer questions corroborated this pattern. Greater caregiver PCE coping was associated with lower youth nonattendance (β=-0.28, P =0.050), and greater caregiver SCE coping was related to higher youth HRQOL (β=0.28, P =0.045). Caregiver coping is related to improved clinic attendance and HRQOL in pediatric SCD. Providers should assess caregiver coping styles and consider encouraging engagement coping.

The Level of Burden among Caregivers of Patients with Alzheimer’s Disease in Saudi Arabia

Caregiver burden is a serious global issue associated with the growing number of older adult patients with Alzheimer's disease (AD). AD patients become more dependent on their caregivers and require assistance with basic daily life activities. This study aims to measure the caregiver burden of informal caregivers of AD patients and to determine their characteristics. In addition, it intends to understand caregiver coping techniques and assess their medication knowledge. This was a cross-sectional study including 148 informal caregivers mainly recruited by the Saudi Alzheimer's Disease Association (SADA). A four-part study questionnaire was used for data collection in the Arabic Language and included the following: socio-demographic characteristics of AD patients and their caregivers, the 12-item version of the Zarit Burden Interview (ZBI), and adapted questions on coping techniques and medication knowledge. A total of 148 caregivers (62% were female) participated in this study, and 79.06% were between 30 and 60 years old. The ZBI average score was 27, indicating a moderate to high burden. Caregivers reported their need for services to improve their quality of life. The medication knowledge was insufficient in most aspects except that more than half were aware of medications' side effects. Our study revealed that the average burden among informal caregivers of AD patients was moderate-high.

Factors Affecting Quality of Life among Caregivers of Cancer Patients in Rishikesh, Uttarakhand, India: A Quantitative Study

Introduction: Cancer impacts not only people living with cancer but also their caregivers. In hospital, caregivers always have pressure on them and their personal and private lives are disrupted during the caring process. Aim: To identify the various factors affecting the Quality Of Life (QOL) among caregivers of cancer patients. Materials and Methods: This quantitative study with an exploratory research design was conducted in oncology Outpatient Department (OPD) of All India Institute of Medical Sciences, Rishikesh, India, from November 2019 to February 2020. A total of 256 caregivers of cancer patients, who were visiting various oncology units were included. Data regarding caregiver’s sample characteristics, clinical variables and caregiver’s Oncology Quality of Life questionnaire (CarGOQoL) were collected. Statistical analysis was done using Chi-square test and Fisher-exact tests were used to study variables. Results: Majority, 94 (37%) belonged to 41-50 years age group, 143 (56%) were females, and 142 (56%) lived in rural areas. Patients’ diagnoses were breast cancer in 94 (37%), Stage-III in 133 (52%), symptoms lasting more than 6-12 months in 103 (40%), and were partial dependent in 172 (67%). A total of 123 (48%) of caregivers scored less in the CarGOQoL questionnaire, so about half of the caregivers had a poor QOL. Caregiver coping (43%) and the private life domain were enormously affected in 193 (37%). Significant relationships with caregivers’ QOL were seen for variables like female gender (p-value=0.037), educational level of patients (p-value=0.018), caregivers with co-morbidities (p-value=0.05), and the number of earning members in the family (p-value=0.022). Conclusion: Care burden always has an impact on the caregiver’s overall QOL. It mainly affected their psychological well-being, burdens, and private lives. Therefore, comprehensive attention should be given to patients as well as caregivers.

PS-C18-12: STRESS AND COPING STRATEGY AMONG CAREGIVERS OF HYPERTENSIVE PATIENTS UNDERGOING HEMODIALYSIS- A PROSPECTIVE STUDY

Objective: To find out the level of burden/stress, and quality of life (QoL) among caregivers of hypertensive patients undergoing hemodialysis. And, to access the coping strategies used by caregivers. Design and Methods: This was a prospective observational study of caregivers of hypertensive patients undergoing hemodialysis having a history of caring for hemodialysis patient for at least 3 months and who had more than or equal to 18 years of age. A scheduled interview was arranged for each participant to complete the validated inventory questionnaire; Caregivers burden (CGB) Scale, WHO-QOL-BREF scale, and COPE inventory questionnaire to measure the level of stress, QoL and coping strategies used by the caregivers. Results: A total of 100 caregivers of hypertensive patients undergoing hemodialysis were enrolled in the study. Age varied from 20 to 76 years (mean 39.66 ± 12.74 years). The majority of the participants were male (62.9%) married (83.5%), employed (68%), and literate (95.8%). Around half (50.5%) of the patients had reimbursed the cost of dialysis from the Government schemes. Around half of the caregivers reported medium to high (medium, high; 40.21%, 10.31% respectively) levels of stress on utilizing the CGB scale. Using the WHOQOL-BREF questionnaire, it was found that participants had an overall good QoL (Table 1). Most of the caregivers adopted turning to religion, seeking social support, positive reinterpretation, planning, and acceptance as a coping strategy (Table 1). Conclusion: In view of moderate to high levels of stress among caregivers of hypertensive patients undergoing hemodialysis, there may be recommendations for developing a practicing guideline to address the caregiver assessment, education, and provision of referral to support services.

Layers of Loss: A Scoping Review and Taxonomy of HD Caregivers' Spiritual Suffering, Grief/Loss and Coping Strategies.

Huntington's disease (HD), an incurable, multi-generational, autosomal dominant disorder, creating unique challenges and a myriad of spiritually-related stressors in those affected and their familial caregivers. Spiritual suffering, experiences of grief/loss, and coping strategies have not been systematically studied in HD caregivers. To comprehensively define spiritual suffering, grief/loss, and coping strategies used by HD caregivers. A PRISMA-ScR scoping literature review was conducted. Data from included research articles were organized thematically using induction and open coding. A grounded, deductive approach was used to delineate a demarcated taxonomy of themes, which encompasses all three over-arching domains. Four reviewers, employing a modified Delphi approach, ascertained which themes were demonstrated by research participants in each study. 36 of 583 articles met the review criteria; none were published in the palliative care literature. Investigations primarily focused on intrapersonal (self-image) distress and existential angst; only rarely looked deeper into divine/transpersonal suffering, disrupted religious relationships, or meaning distress. HD caregivers experience profound grief/loss, expressed as disenfranchised grief that is associated with the ambiguous loss of their loved one, loss of family structure, social connectedness, and personal losses. Half of the studies reported maladaptive HD caregiver coping strategies-characterized by dysfunctional escape schemes; in contrast, transcendent/creative strategies were often unexplored. HD caregivers experience prolonged grief and other forms of spiritual suffering as they progressively lose their loved ones and disruption to their own lives. With an improved assessment tool, teams with spiritual and palliative care experts will better be able to support HD family caregivers.

Religious-spiritual coping in family caregivers of Brazilian children and adolescents with cancer

ABSTRACT The aim of this study was to understand how family caregivers of Brazilian children and adolescents with cancer experience and use religious-spiritual coping. This is a qualitative study carried out with 23 participants (being 21 women and two men; age average of 35,9 years old). Semi-structured interviews were virtually conducted, recorded, fully transcribed, organized and analyzed using a thematic-reflective analysis. The results found to allow us to indicate that positive and negative religious-spiritual coping affects the quality of life, physical and emotional health of family members, reverberating in the way they deal with and understand cancer in children and adolescents. The data found demonstrate that paediatric oncology health services and professionals should consider religious-spiritual coping and be prepared to meet the demands of this nature that may arise.

Coping socialization in Black families: A latent profile analysis.

The purpose of the present study was to employ latent profile analysis (LPA) to identify distinct profiles of Black caregivers based on how they socialize their children to cope with stress. Participants included 126 Black female caregivers (Mage = 40.67, SD = 9.73) who provided data on 149 4th-8th-grade children (61% female; Mage = 11.21, SD = 1.52). Caregivers self-reported on socialization of child coping, caregiver support, and caregiver coping behaviors; children reported on caregiver socialization of coping, caregiver support, and child coping. The LPA revealed three distinct socialization profiles: A low diversified socialization profile, an engagement socialization profile, and a high diversified socialization profile. Caregivers in the low diversified socialization profile reported lower levels of primary and secondary engagement and disengagement coping, as well as increased parental support, compared to both the engagement socialization profile and high diversified socialization profile. Furthermore, results revealed that the three socialization profiles did not differ on children's self-report of coping. Results from the present study suggest variability among Black caregivers' coping socialization strategies and additional research is needed to maximize best outcomes for Black youth and their families. (PsycInfo Database Record (c) 2022 APA, all rights reserved).