Caregivers Of Palliative Care Patients Research Articles

Understanding caregiver burden and quality of life in Kerala’s primary palliative care program: a mixed methods study from caregivers and providers’ perspectives

BackgroundFamily caregivers are vital for long-term care for persons with serious health-related suffering in Kerala. Long-term caregiving and ageing may become burdensome and detrimental to patients and caregivers. We compared the caregiver burden and quality-of-life of ageing caregivers with younger caregivers. We also explored the palliative care nurses’ perceptions of the family caregivers’ issues.MethodsWe did a mixed method study focusing on two groups: (i) three in-depth interviews and a cross-sectional survey among 221 caregivers of palliative care patients in five randomly selected panchayats (most peripheral tier of three-tier local self-government system in India concerned with governance of a village or small town) of Kollam district, Kerala, as part of development and validation of the Achutha Menon Centre Caregiver Burden Inventory; (ii) five in-depth interviews with purposively selected primary palliative care nurses as part of a study on local governments and palliative care. We used a structured interview schedule to collect cross-sectional data on sociodemographic and caregiving-related characteristics, caregiver burden, and health-related quality of life using the EuroQol EQ5D5L and interview guidelines on caregiver issues tailored based on participant type for qualitative interviews.ResultsOlder caregivers comprised 28.1% of the sample and had significantly poorer health and quality-of-life attributes. More senior caregivers experiencing caregiver burden had the lowest mean scores of 0.877 (Standard deviation (SD 0.066, 95% confidence intervals (CI) 0.854–0.899) followed by younger caregivers with high burden (0.926, SD 0.090, 95% CI 0.907–0.945), older caregivers with low burden (0.935, SD 0.058, 95% CI 0.912–0.958) and younger caregivers with low burden (0.980, SD 0.041, 95% CI 0.970–0.990). Caregivers faced physical, psychological, social, and financial issues, leading to a caregiver burden. The relationships between the palliative care nurses and family caregivers were complex, and nurses perceived caregiver burden, but there were no specific interventions to address this.ConclusionIn our study from Kollam, Kerala, three out of ten caregivers of palliative care patients were 60 years of age or older. They had significantly lower health-related quality of life, particularly if they perceived caregiver burden. Despite being recognized by palliative care nurses, caregiver issues were not systematically addressed. Further research and suitable interventions must be developed to target such problems in the palliative care programme in Kerala.

RELIGIOUS AND CULTURAL RITUALS THAT CAREGIVERS OF MUSLIM PALLIATIVE CARE PATIENTS REFRAIN FROM PERFORMING DURING THE GRIEVING PROCESS

Aim: This study was conducted to determine the religious and cultural rituals that caregivers of palliative care patients refrain from performing during the grieving process. Method: This study was conducted between May-July 2021. The population of the study consisted of caregivers of patients hospitalised in the palliative care centre of a hospital. The sample size was 286 people. Results: When we asked the caregivers about the activities they avoid doing after the death of their relatives; 59.1% stated that they avoid wearing make-up, 61.2% avoid wearing colourful/ornate clothes, 74.8% avoid laughing, 73.4% avoid going to wedding/parties, 71.3% avoid singing, 78.7% avoid dancing/playing. When we asked the caregivers why they did not do these activities; 71% stated that they felt uneasy, 69.6% stated that it was a sin, and 75% stated that they avoided disrespecting the deceased. Conclusions and Suggestions: According to the results of the study, it was determined that caregivers of palliative care patients have religious and cultural rituals that should be avoided during the grieving process regarding daily life, food, colours and clothes and personal care. There are religious and cultural rituals that societies avoid applying as well as the rituals they apply. In order for public health nurses to support the family during the mourning period, they need to know the rituals that families and societies avoid applying as well as the rituals they apply in order to make the grieving process healthier.

Prevalence of and factors associated with demoralization among family caregivers of palliative care patients in Hong Kong.

This study aims to examine (1) the prevalence of demoralization among family caregivers of palliative care patients (PCP) in Hong Kong, (2) the percentage of caregivers who are demoralized but not depressed, (3) the factors associated with demoralization, and (4) the differences in caregivers' support needs between high and low levels of demoralization groups. Ninety-four family caregivers were recruited and completed a questionnaire that included measures of demoralization, depression and caregiving strain, caregivers' support needs, and demographic information. The prevalence of demoralization among family caregivers of PCP was found to be 12.8% (cutoff score = 50) and 51.1% (cutoff score = 30). Although 27.7% of caregivers met the criteria of depression and demoralization, 12.8% of demoralized caregivers were not depressed. Depression and caregiving strain were identified as the predictors of demoralization. Caregivers with a poorer subjective physical status and a lower education level are more prone to demoralization. The three major caregivers' needs for support reported were (1) knowing what to expect in the future (77.7%); (2) knowing who to contact (74.5%); and (3) understanding your relative's illness (73.4%). Those who experienced a high level of demoralization often reported more need for support in end-of-life caregiving. This is the first study that focused on the demoralization of family caregivers of PCP in the East Asian context. Demoralization is prevalent among these caregivers. We recommend that early assessment of demoralization among family caregivers of PCP be considered, especially for those who are more depressed and have a higher level of caregiving stress.

Perceptions of an educational intervention for family caregivers of palliative care patients.

Nursing interventions aimed at family caregivers of palliative cancer patients require not only an objective evaluation, but also subjective consideration of their contributions, and a qualitative evaluation that provides an in-depth understanding of these interventions. This study aimed to explore the perceptions that family caregivers of palliative cancer patients had of the nursing intervention, PalliActive Caregivers, in reducing the uncertainty associated with illness and improving the caregiver's quality of life. A qualitative approach with content analysis was used. Telephone interviews were conducted with 23 caregivers who participated in the intervention. Five themes emerged from the content analysis: consolidating physical care, adopting a positive attitude, strengthening the support available to the caregiver, strengthening spirituality and strengthening relationships. The themes showed a positive impact of the intervention on aspects such as the caregiver's ability to cope, spirituality and social support of caregivers. The results also indicated the possibility of conducting this type of study to identify other assessment variables for future interventions.

Toward a preventive approach to prolonged grief disorder in palliative care: Insecure attachment moderates the impact of perceived support on the severity of symptoms.

This study aimed to investigate the relationships between perceived support at the time of assistance, insecure attachment (i.e., avoidance and anxious attachment), and prolonged grief symptoms in family caregivers of palliative care patients deceased for at least one year. We also investigated the moderating role of insecure attachment in the relationship between perceived support and the intensity of prolonged grief symptoms. An exploratory cross-sectional design was used. A sample of 157 participants completed the Prolonged Grief Scale (PG-13) and the Attachment Style Questionnaire (ASQ). Correlational analyses indicated that prolonged grief symptoms were positively correlated with Avoidance attachment but not with Anxious attachment. Perceived support was negatively correlated with both the Avoidance and Anxious attachment factors. Lastly, the two insecure attachment dimensions were moderately and positively correlated with each other. Results of moderation analysis showed that high Avoidance attachment moderated the effect of perceived family and social support on the intensity of prolonged grief symptoms among family caregivers of palliative home-care-assisted patients. Results also showed that the Anxious attachment factor had a significant effect on prolonged grief symptoms, even though the interaction with perceived support was not significant. Overall, these results underline that a high level of avoidance attachment may moderate the relationship between perceived support and the intensity of grief symptoms, thereby increasing the risk of developing a mental disorder. Interventions to prevent prolonged grief disorder among family caregivers should take these findings into account.

Predictors of Complicated Grief in Caregivers of Palliative Care Patients.

Introduction: It is important to identify the factors s associated with complicated grief (CG) in order to prevent it. Objective: To determine the factors associated with CG in the end-of-life phase within the palliative care context. Method: The PRISMA model was followed for the review. We accessed the following databases: PUBMED, SCOPUS, and PsycoINFO, to review publications from 2006. Results: A total of 17 studies were obtained. A direct relationship between factors prior to bereavement and CG is established: intensity of anticipated grief, previous mental and physical health of the caregiver, social support; quality of patient care, communication at the end-of-life, preparation for death, spirituality, and sociodemographic factors. Conclusions: Previous mental health and level of anticipatory grief in the main caregiver are shown to be the most powerful predictors of CG. Patient age and quality of care are factors considered as strong predictors of CG in almost every study.

Failures in Reflective Functioning and Reported Symptoms of Anxiety and Depression in Bereaved Individuals: A Study on a Sample of Family Caregivers of Palliative Care Patients.

Introduction. This study aims at examining the role of failures in reflective functioning in predicting anxiety and depression among family caregivers of palliative care patients deceased for at least one year. Methods. A sample of 157 bereaved participants (77.1% females, mean age = 43.50 ± 14.04 years) completed the Hospital Anxiety and Depression Scale (HADS) and the Reflective Functioning Questionnaire (RFQ). Results. Results of the correlational analysis showed that anxiety was positively correlated with uncertainty about mental states, indicating one type of impairment in reflective functioning. Anxiety was also negatively correlated with the certainty about mental states. Depression was negatively correlated with certainty but not with uncertainty about mental states. The results of regression analysis indicated that gender and certainty about mental states were statistically significant predictors of anxiety, with the final model explaining 23% of the variance. The results also showed that gender, the condition of being the main caregiver, and the certainty about mental states were significant predictors of depression, with the final model predicting 14% of the variance. Conclusions. Overall, the results of this study point out that the bereaved individuals who scored low on certainty about mental states reported more symptoms of anxiety and depression. Psychological interventions to prevent mental disorders and to promote psychological health in the context of palliative care should carefully consider these findings.

Evidence-based Clinical Practice Guidelines for Caregivers of Palliative Care Patients on the Prevention of Pressure Ulcer.

Pressure ulcers are the most common condition among palliative care patients at home care facilities and impose a significant burden on patients, their relatives, and caregivers. Caregivers play a vital role in preventing pressure ulcers. When the caregivers are knowledgeable about preventing pressure ulcers, they will be able to avoid lots of discomfort for the patients. It will help the patient to achieve the best quality of life and spend the last days of life peacefully and comfortably with dignity. It is essential to develop evidence-based guidelines for caregivers of palliative care patients on pressure ulcer prevention, which may play a major role in preventing pressure ulcers. The primary objective is to implement evidence-based guidelines for caregivers of palliative care patients on pressure ulcer prevention.The secondary objective is to improve the knowledge and practice of caregivers and enable them to take measures to prevent pressure ulcer development among palliative care patients, thereby improving the quality of life of palliative care patients. Following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses), a systematic review was conducted. The search was conducted using electronic databases Pub Med, CINHAL, Cochrane and EMBASE database. The studies selected were in the English language and with free full text. The studies were selected and assessed for quality using the Cochrane risk assessment tool. Clinical practice guidelines, systematic reviews, and randomized controlled trials conducted on pressure ulcer prevention in palliative care patients were selected for the review. Twenty Eight studies were found to be potentially relevant after screening the search results. Twelve studies were not found suitable. 5 RCTs did not meet the inclusion criteria. Finally, four systematic reviews, five RCTs, and two clinical practice guidelines were included in the study, and guidelines were prepared. Based on the best available research evidence, clinical practice guidelines were developed on skin assessment, skin care, repositioning, mobilization, nutrition, and hydration to prevent pressure ulcers to guide caregivers of palliative care patients. The evidence-based nursing practice integrates the best research evidence with clinical expertise and patient values. Evidence-based nursing practice leads to a problem-solving approach which is existing or anticipated. This will contribute to choosing appropriate preventive strategies for maintaining patients' comfort, thereby improving the quality of life of palliative care patients. The guidelines were prepared through an extensive systematic review, RCT, and other guidelines followed in different settings and modified to suit the current setting.

Psychometric Properties of the Spanish Version of the Fatigue Assessment Scale in Caregivers of Palliative Care Patients.

Symptoms of fatigue and lack of energy are very common in caregivers of palliative care (PC) patients, traditionally associated with variables such as burden or depression. There are no Spanish-language instruments validated for assessing fatigue levels in this population. The Fatigue Assessment Scale (FAS) is a useful and simple instrument for assessing fatigue in this group. The aim of this study was to examine its psychometric properties (factor structure, reliability and validity) in a sample of caregivers of PC patients. Instrumental design for instrument validation was performed. One hundred and eight caregivers of PC patients participated and completed measures of fatigue, family functioning, life satisfaction, caregiver burden, anxiety, depression, resilience and quality of life. A confirmatory factor analysis was performed; non-linear reliability coefficient and Pearson correlations and t-tests were conducted to assess evidence of reliability and validity. The Spanish version of the FAS was found to have a one-dimensional structure. Reliability was 0.88. Validity evidence showed that FAS scores were positively associated with levels of burden, anxiety and depression. They were negatively associated with family functioning, life satisfaction, resilience and quality of life. The Spanish version of the FAS in caregivers of PC patients shows adequate psychometric properties.

Anxiety in caregivers of palliative care patients

Anxiety in caregivers of palliative care patients

Prevalence and factors associated with depressive symptoms among family caregivers of palliative care patients at Hospice Africa Uganda.

This study aimed to establish the prevalence and factors associated with depressive symptoms among family caregivers of palliative care patients at Hospice Africa Uganda. We used a mixed method study to determine the prevalence and factors associated with depressive symptoms among family caregivers of palliative care patients at Hospice Africa Uganda. We assessed depressive symptoms using the Patient Health Questionnaire-9 (PHQ-9) and collected socio-demographic data using a tailored questionnaire. We used binary logistic regression to assess for the association between depressive symptomatology and caregiver socio-demographic and clinical characteristics. We recruited 161 family caregivers, 64% of whom were female. The study revealed a high prevalence of depressive symptoms (46%) (n = 74) among the family caregivers. Education status and religious affiliation were significantly associated with depressive symptomatology. Family caregivers of palliative care patients face a high burden of depressive symptoms. Efforts to care for family caregivers within palliative care should include assessment and management of depressive symptoms in this population.

Validation of the Latin American-Spanish version of the scale 'Quality of Life in Life-Threatening Illness-Family Caregiver Version' (QOLLTI-F).

Measuring the quality of life in family caregivers of people in palliative care is essential to document the impact of care on the caregiver. This study aimed to adapt and validate a Latin American-Spanish version of the QOLLTI-F scale in family caregivers of palliative care patients. This study was conducted between May and November 2019 in Medellin, Colombia. We develop three phases: translation and semantic adaptation (n=17), face and content validity (n=21), construct validity, internal consistency (n=208) and test-retest reliability (n=35). Main family caregivers of stage-IV cancer patients receiving palliative treatment, participated. In the translation and semantic adaptation, some items were adjusted following the caregivers' recommendations. In face validity, Fleiss' Kappa was over 0.65 for family caregivers. In content validity, Fleiss' Kappa ranged from 0.54 to 1 for experts. In construct validity, the original version seven-factor structure did not show appropriate model fit indices. The data revealed instead a new 3-factor structure related to (1) impact of care-giving, (2) social and healthcare interactions and (3) meaning of life. Cronbach's alpha was 0.83 for the overall scale. Test-retest reliability was 0.87 between measurements 1 and 2. This study found that The Latin American-Spanish version of the QOLLTI-F scale is an understandable, useful, and relevant tool for family caregivers of people with cancer receiving palliative care. Future research is needed to confirm the factor structure identified in this study.

Comfort Level in Caregivers of Palliative Care Patients and Affecting Factors: What Should We Know?

Caregivers are an important source of support for patients in palliative care. Comfort is an important concept in nursing care for both patients and their families, and nurses aim to increase comfort. The aim of the study was to determine the comfort level and influencing factors in caregivers of palliative care patients. The research sample consisted of 102 caregivers related to palliative care patients. The data were obtained with an Individual Information Form, the Edmonton Symptom Assessment Scale (ESAS) and the End of Life Comfort Scale (Caregiver/Family). The study was conducted in the palliative care clinic of Aksaray University Training and Research Hospital between October 2018 and April 2019. There was a significant relationship between the total comfort score of the caregivers and the patient's performance status, the caregivers' age, their economic situation, the length of the caregiving period and receiving help in care (social support) (p < 0.05). Providing comfort is an important function and challenge for holistic nursing care, as comfort is a lifelong need in health and disease. Caregivers in the risk group should be aware of this issue and necessary precautions should be taken.

Support Intervention for Families and Caregivers of Palliative Care Patients (QI701)

Support Intervention for Families and Caregivers of Palliative Care Patients (QI701)

Care Burden and Quality of Life in Family Caregivers of Palliative Care Patients

This research was conducted for the purpose of examining the care burden and quality of life in family caregivers of palliative care patients. The research design was a descriptive correlational study conducted with the caregivers of 163 patients residing in palliative care units. Data were collected via a demographic survey, The Zarit Burden Interview (ZBI) and the World Health Organization Quality of Life Assessment (WHOQOL). The results showed that there was a negative correlation between ZBI and WHOQOL scores. Further, there was a significant negative correlation between many subdimensions of the ZBI (general quality of life, general perception of health, being satisfied with daily life skills, home conditions, energy and self-satisfaction) and the WHOQOL. Quality of life thus appeared to be reduced in family members with a high level of care burden and that the quality of life of caregivers depends on the individual characteristics of the caregiver. Social workers, nurses and physicians should regularly assess the burden and quality of life of caregivers.

Desarrollo de una intervención cognitiva-existencial para disminuir la fatiga por compasión en cuidadores formales

Palliative care aims to improve the quality of life of patients with chronic and advanced illnesses and their families. This requires a multidisciplinary approach from formal caregivers. Though caring for others could be rewarding and this satisfaction relates to higher work engagement and resiliency, formal caregivers of palliative care patients may develop compassion fatigue due to the nature of their work. This fatigue affects caregivers, their interpersonal relationships, and the quality of care they provide. Supporting formal caregivers and improving communication plays a vital role. Considering the efficacy of the existential interventions in other populations, and the lack of testing of these interventions on formal caregivers of palliative care teams, this article aims to describe the design and development of an eight-session cognitive-existential group-based psychoeducational intervention to reduce compassion fatigue and to promote self-care and satisfaction of formal caregivers of palliative care patients in a Latin American context. The intervention used Frankl’s Logotherapy and Ellis’ rational emotive therapy as the theoretical framework and included the necessities of formal caregivers in this specific setting. As a result, this article presents the theoretical development of the intervention and its structure, as well as the objectives and specific content of each session. Empirical research, reported elsewhere, has proven its long-term effectiveness in reducing the compassion fatigue of this population. This makes it a replicable intervention with promising results. Future studies need to continue its evaluation and include professionals in other settings outside palliative care.

Blessings or burdens: an Interpretative Phenomenological Analysis (IPA) study on the motivations and their impact on end-of-life caregiving among Asian family caregivers

BackgroundWhile the impact of family caregiving has been well-documented, many of such studies center on investigating external factors such as socioeconomic status, accessibility to resources and availability of social support as the primary causation of caregiver wellbeing outcomes. This paper explores the motivations that drive family caregivers in supporting their family members at the end-of-life, and critically examines how internal appraisal processes of such motivations can both positively and negatively impact their wellbeing.MethodsThis study adopted an interpretative phenomenological analysis (IPA) to investigate the motivations and internal appraisal processes of Asian family caregivers in Singapore who were tending to a dying family member. Qualitative dyadic interview data (N = 20) was drawn from a larger Randomized Controlled Trial for a novel Family Dignity Intervention (FDI) for palliative care patients and their families. The sampling population consisted of participants aged 21 and above who were identified to be the primary caregivers of older palliative care patients with a prognosis of less than 12 months. Data collection was conducted in the homes of patients and family caregivers.ResultsFindings revealed six themes that could either nurture or diminish caregiver wellbeing: 1) Honoring Fidelity (caregivers were motivated to commit to their caregiving roles in order to avoid regret), 2) Alleviating Suffering (caregivers were motivated to relieve their family member’s pain), 3) Enduring Attachment (caregivers were motivated to spend time together with their family member), 4) Preserving Gratitude (caregivers were motivated to express their appreciation to their family member by caregiving), 5) Navigating Change (caregivers were motivated to adapt accordingly to changes in the illness trajectory) and 6) Reconciling with Mortality (caregivers were motivated to respond accordingly to their family member’s prognosis). The final theme of the Wellbeing Determinant is posited as an indication of self-determination, and is conjectured to influence how caregiving motivations are appraised by the caregiver.ConclusionFulfilling and enhancing one’s sense of self-determination appears central to infusing one’s caregiving motivations with positive meaning, and consequently nurturing one’s wellbeing in the end-of-life caregiving journey. These findings are discussed with recommendations for healthcare professionals working with family caregivers of palliative care patients.

Psychosocial problems of family caregivers of palliative care patients and their spiritual coping styles.

The aim of the study was to examine the psychosocial problems and spiritual coping styles of the family caregivers related to patients receiving palliative care. The research sample consisted of 76 family caregivers related to palliative care patients. The data collection method used were questionnaire forms. The two forms used were Hospital Anxiety Depression Scale and Religious Coping Methods Scale. The mean anxiety score of the participants was 10.86 ± 4.30, mean depression score was 9.38 ± 3.66, mean positive coping scale score was 25.31 ± 3.85, and mean negative coping scale score was 10.32 ± 3.38. Healthcare professionals involved in palliative care are encouraged to evaluate the spiritual experiences of family caregiver to support their wellbeing.

Orthopedic Problems in Family Caregivers of Palliative Care Patients

Objective: The studies on caregivers focus more on their psychological impact. The caregivers’ orthopedic problems are not taken into consideration. We aimed to determine the orthopedic problems of the patient family caregivers and to examine the relationship with burden of care.Methods: Caregivers of palliative care who look after the patient recieving palliative care at least two months were included in the study. The outcome measurements: Oswestry neck pain questionnaire,arm shoulder hand disability questionnaire (DASH), Western Ontario and McMaster osteoarthritis index (WOMAC), Short Form 36 (SF-36), International Physical Activity Questionnaire (IPAQ), Zarit Burden Interview (ZBI) and BECK depression inventory (BDI).Results: A cross-sectional study was carried our with fourty-two caregivers who averaged 50 years, were mostly female (81%), married (76%) and housewife (59%). Mean DASH score was 18.82, while Oswestry score was 22.18. According to the IPAQ total score, the cases were in the physically active category (10145 MET). In all SF36 subgroup, there was a statistically insignificant decrease compared to normative values (p&amp;gt; 0,05). Total burden score was 38,64. The ZBI correlated with DASH (r = 0,479), WOMAC (r = 0,453), Oswestry (r = 0,645) many SF36 subgroups (p&amp;lt;0,05) and BDI (p&amp;lt;0,001).Conclusion: There are some orthopedic problems besides psychological problems related to the burden of family caregivers. Strategies should be developed to provide education and support for the development of methods for the prevention and treatment of orthopedic problems affecting the quality of life of family caregivers.

Level of Burden and Health-Related Quality of Life in Caregivers of Palliative Care Patients

The complexity of palliative care means that the emotional distress and burden that primary family caregivers suffer under can be particularly high. The objective of this study was to determine the level of burden endured by these primary family caregivers and to identify the variables that predict it in the caregiving relatives of people who require home-based palliative care. A descriptive-correlational cross-sectional study was conducted. Socio-demographic and clinical data were collected from caregivers through a self-administered questionnaire that included questions from the 12-Item Short Form Health Survey (SF-12), Zarit Caregiver Burden Interview (ZBI), Hospital Anxiety and Depression Scale (HADS), Brief Resilient Coping Scale (BRCS), Post Traumatic Growth Inventory (PTGI), and Fatigue Assessment Scale (FAS). A total of 77 caregivers participated; 66.2% were women, and the mean age was 61.5 years. Most (62.3%) were providing care to cancer patients. From among these data, the presence of anxiety as a clinical problem (48.1%), a high average fatigue score (FAS) of 23.0 (SD = 8.5), and the prevalence of intense overload (41.6%) stood out. We found statistically significant correlations between the variables of burden, fatigue, post-traumatic growth, anxiety, and depression, with the latter two being the main predictive variables of burden. In addition, caregiver burden was associated with a worsening of health. Identifying the factors that influence the appearance of overburden will allow the specific needs of careers to be assessed in order to offer them emotional support within the healthcare environment.