Family Caregivers In Palliative Care Research Articles

Supportive relationships between patients and family caregivers in specialist palliative care: a qualitative study of barriers and facilitators

ObjectivesPatients with advanced illness and their family caregivers can be mutually supportive. However, what facilitates and/or restricts supportive relationships between patients and family caregivers in palliative care remains unclear. We...

Mutual support between patients and family caregivers in palliative care: A qualitative study

Background: Patients in receipt of palliative care services are often viewed primarily as recipients of support from their family caregiver. There is a dearth of evidence in palliative care on what comprises mutual support between patients and their family caregivers in palliative care. Aim: To identify processes of mutual support between patients and family caregivers in palliative care. Design: Qualitative study comprising semi-structured interviews. Data were analysed using grounded theory procedures. Setting/participants: Fifteen patients with advanced illness (cancer n = 14, neurodegenerative n = 1) and 21 family caregivers recruited from a large regional-based hospice. Results: Mutual support between patients and family caregivers comprised two primary modes in which support was provided and received. Mutual support involved both patients and family caregivers providing similar types of support to each other, and which typically manifested as emotional support. However, mutual support also occurred when patients reciprocated by providing emotional support to their family caregivers to compensate for other forms of support which they felt no longer able to provide. Patients supported family caregivers by involving them in decision-making for care and both patient and family caregiver preferences were influenced by obligation to their respective other. Mutual support comprised both disclosure and concealment. Involving family caregivers in patient care decision-making was intended by patients to help family caregivers adjust to a caregiving role. Conclusions: The findings inform the development and delivery of psychosocial interventions for patients and family caregivers in palliative care aimed at facilitating supportive relations between them.

Decision-making in palliative care: patient and family caregiver concordance and discordance—systematic review and narrative synthesis

BackgroundDecision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and function between patients and family caregivers in palliative care is...

Higher levels of unmet support needs in spouses are associated with poorer quality of life \u2013 a descriptive cross-sectional study in the context of palliative home care

BackgroundFamily caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. This study aims to explore associations between family caregivers’ support needs and quality of life when caring for a spouse receiving specialized palliative home care.MethodsA descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness – Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses.ResultsHigher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient’s life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient’s condition, and the family caregiver’s own physical and emotional health.ConclusionWith a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers’ QoL by revealing their problems and concerns. Thus, tailored support is needed.

The Effectiveness of Bereavement Support for Adult Family Caregivers in Palliative Care: A Meta-Analysis of Randomized Controlled Trials.

This meta-analysis aimed to summarize and synthesize the effectiveness of bereavement support for adult family caregivers in palliative care. Meta-analysis was conducted. The databases of the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Cochrane, Embase, Medline, PubMed, Scopus, and Web of Science were comprehensively searched from inception until January 2020. This study followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and standard methods for conducting a meta-analysis. Data analysis was performed using Comprehensive Meta-analysis version 3.0, and the random-effects model was adopted. In total, 19 randomized controlled trials with an overall sample size of 2,690 participants met the inclusion criteria. The study showed that bereavement support had a significant effect on reducing grief (Hedges' g score = -0.198; 95% confidence interval [CI] -0.310 to -0.087), depression (Hedges' g score = -0.252; 95% CI -0.406 to -0.098), and anxiety (Hedges' g score = -0.153; 95% CI -0.283 to -0.023); however, high heterogeneity was present. No statistically significant difference was shown for traumatic feelings. Based on moderator analysis, a group format was more effective for grief, a combined individual and group format for depression, and an individual format for anxiety. Bereavement support was more effective when delivered by professionals, when delivered in more than six sessions, and need to be evaluated within 6 months. Bereavement support was effective in reducing grief, depression, and anxiety. The majority of the included studies had moderate heterogeneity, which limited the comparability of the evidence. Therefore, more robust randomized controlled trials are needed to confirm these study results. This meta-analysis provides evidence that bereavement support delivered in the palliative care setting is effective for reducing grief, depression, and anxiety. Nurses and other healthcare professionals can make recommendations for adult family caregivers based on this study in reducing psychological symptoms due to a loss in the palliative care domain.

The experiences of well-being of family caregivers in palliative care: A qualitative study using thematic analysis

Background Family caregivers play an important role in supporting patients at the end of life. Although providing care for palliative care patients can be inherently stressful, it is possible for family caregivers to experience both positive experiences and stress simultaneously. Understanding these positive experiences can be helpful to aid counterbalancing the negative aspect of caregiving. Objective and Methods Therefore, we conducted a qualitative study using face-to-face interviews with semi-structured questions to explore the experiences of well-being of palliative care family caregivers from a positive perspective. The entire sample consisted of 18 family members caring for cancer patients and 2 family members caring for patients with motor neuron disease. The interviews were transcribed verbatim and thematically analyzed with qualitative research software NVIVO. Results The themes generated from the analysis are: (1) Acceptance, (2) Gratitude, (3) Hope, (4) Happiness and (5) Support. Conclusions The 5 themes provide 6 constructs for independent intervention. Understanding these themes that promote caregiver well-being can be a guide for us to take care of our family caregivers.

Intensity of Predeath Grief and Postdeath Grief of Family Caregivers in Palliative Care in Relation to Preparedness for Caregiving, Caregiver Burden, and Social Support.

Background: The intensity of predeath grief is associated with postdeath grief in family caregivers of patients in palliative care. Different factors during caregiving may influence this association.Objective: To examine (1) the intensity of grief in relation to preparedness for caregiving, caregiver burden, and social support, and (2) if these variables moderate associations between predeath and postdeath grief.Methods: This prospective correlational study used unpaired t-test to compare grief in relation to preparedness for caregiving, caregiver burden, and social support. Hierarchical multiple linear regression analysis investigated moderation effects. Family caregivers were recruited from 10 palliative homecare facilities. The Anticipatory Grief Scale, Texas Revised Inventory of Grief, Preparedness for Caregiving Scale, Caregiver Burden Scale, and Multidimensional Scale of Perceived Social Support were used. Ethical approval for the study was granted by the Regional Ethical Review Board in Stockholm, Sweden.Results: In total, 128 family caregivers participated. Those with high caregiver burden scored significantly higher intensity of predeath but not postdeath grief. Caregiver burden and social support moderated the association between intensity of predeath grief and postdeath grief. There was a stronger association between predeath and postdeath grief among caregivers with low caregiver burden or low social support. Preparedness for caregiving had no moderating effect.Discussion: Attention should be directed to caregiver burden and social support during family caregiving, as these variables seem to be significant for the intensity of grief before and after the patient's death. Acknowledging predeath grief during caregiving and recognizing pre- and postdeath grief as parts of the same process are of importance in clinical practice and when designing supportive interventions.

Family Caregiver’s Anticipatory Grief—Clinical Interview: Psychometric Characteristics and Scoring Pattern

This study describes the development and the preliminary validation of the Family Caregiver Anticipatory Grief Clinical Interview (FcAG-CI). This instrument, conceptually based in Adult Attachment Theory, evaluates Anticipatory Grief response patterns of cancer family caregivers; semistructured interviews were conducted in a sample of family caregivers in palliative care ( n = 72, mostly women, adult children, or spouses, mean age of 52.37) and coded according to the rating guidelines. FcAG-CI, composed of eight domains, shows convergent and concurrent validity with self-reported predeath prolonged grief disorder symptoms as well as divergent validity with the Zarit Burden Interview. The tests for reliability suggest that it has reasonable consistency (Cronbach’s α = .750) and very good interrater reliability. Two factors were identified, corresponding to the two major sources of distress: traumatic and relational aspects of end-of-life caregiving. This instrument, allows the categorization of respondents in four different profiles (Avoidant, Adjusted, Traumatic, and Intense Anticipatory Grief), with clear implications for clinical practice.

Silent voices: Family caregivers' narratives of involvement in palliative care.

AimTo explore how family caregivers experience involvement in palliative care.DesignA qualitative design with a narrative approach was used.MethodsPurposive sampling and narrative interviews were conducted. Eleven bereaved family caregivers for patients with cancer receiving palliative care were interviewed in Mid‐Norway between November 2016–May 2017.ResultsWe identified four themes related to family caregivers' experiences of involvement in the early, middle, terminal and bereavement phases of palliative care: (a) limited involvement in the early phase; (b) emphasis on patient‐centred care in the middle phase; (c) lack of preparation for the dying phase; and (d) lack of systematic follow‐up after death. Family caregivers experienced low level of involvement throughout the palliative pathway.ConclusionThe involvement of family caregivers in palliative care may not be proportional to their responsibilities. The needs of family caregivers should be addressed in nursing education to give nurses competence to support family caregivers in providing home‐based care.

Navigating the path to care and death at home—it is not always smooth: a qualitative examination of the experiences of bereaved family caregivers in palliative care

Abstract Background: Care and death at home are generally thought to be beneficial for families. However, there may be bereavement experiences and support needs, which are specific to family caregivers providing end-of-life care in their home. The Palliative Care Home Support Program in New South Wales, Australia, provides end-of-life care packages for patients who wish to die at home. These packages provide up to 48 hours of specialized supportive palliative home-based care, day or night, by community workers specifically trained for the task, working as part of existing community palliative care multidisciplinary teams. Care packages may include assistance with personal hygiene, carer respite, and domestic assistance. Methods: As part of a larger longitudinal mixed-methods study, 28 bereaved caregivers who experienced a home death and/or received the care packages undertook in-depth interviews. Narrative thematic analysis was undertaken to explore their experiences at 6 months post death. Results: Twenty-eight caregivers were experienced or planned for a home death and 21 had a package in place. Five themes were identified: “the achievements of a home death”; “taking on the mantle”; “the burden of witnessing the dying process”; “home as our space/their space”; and “resistance or submission to the ideals of best place of care for family caregivers.” Conclusions: Bereaved caregivers provided accounts of their interactions with health care providers depicting a complex relationship with the care system. Some families struggled to manage boundaries of home and private space as care needs escalated. Ideals about best care and home death are sometimes conflicted, without easy consensus between patient, family, and service providers. Significance: Models of care based on assumptions that home death is straightforwardly beneficial may cause unintended consequences. For future policy, providing care in the private space of the home requires close attention to family concerns and outcomes.

Variations in grief, anxiety, depression, and health among family caregivers before and after the death of a close person in the context of palliative home care

This article investigates longitudinal variations in grief, self-rated health, and symptoms of anxiety and depression among family caregivers in palliative care. Data were taken from a randomized psycho-educational intervention trial and were collected at four time-points; at baseline, upon completion, 2 months later, and 6 months after the patient’s death. In total, 117 family caregivers completed all questionnaires. The participants’ grief was stable across the measurements, while anxiety, depression, and health varied significantly (p < 0.05). No significant differences were found between the intervention or control group. In conclusion, grief emerged as a constant phenomenon, distinct from symptoms of anxiety and depression.

Psychometric evaluation of the anticipatory grief scale in a sample of family caregivers in the context of palliative care

IntroductionIn palliative care, family caregivers are often faced with experiences of grief in anticipation of the loss of a close person. An instrument designed to measure this form of grief is the Anticipatory Grief Scale, which includes 27 items and has been used in several studies in various contexts. However, the instrument has not been validated.AimThe aim was to evaluate the psychometric properties, focusing on the factor structure, of the Anticipatory Grief Scale in a sample of family caregivers in palliative care.MethodsThe study had a cross-sectional design. Data were collected from an intervention study in palliative home care that took place between 2013 and 2014. In total, 270 family caregivers in palliative care completed a baseline questionnaire, including the Anticipatory Grief Scale. The factor structure of the scale was evaluated using exploratory factor analysis.ResultsThe initial factor analysis suggested a four-factor solution, but, due to weak communalities, extensive crossloadings, and item inconsistencies, the model was problematic. Further analysis supported that the scale should be reduced to 13 items and two factors. The two subscales captured the behavioral and emotional reactions of grief in family caregivers in palliative care and were named Behavioral reactions and Emotional reactions. This modified version will hereafter be named AGS-13.ConclusionsThis validation study of the Anticipatory Grief Scale resulted in a revised two-factor model, AGS-13, that appears to be promising for use in palliative care but needs to be tested further.

Circumstances and consequences of care: a prospective study in palliative care

The sundry circumstances that affect end-of-life care can have a determining role in the result of this experience, particularly in psychological morbidity levels before and after bereavement. The aim of this study is to describe the prevalence of psychopathological symptoms and overburden among family caregivers in palliative care and to identify the circumstances associated with care provision. An attempt was made to evaluate the progress of psychopathological symptoms, identifying circumstantial factors that can interfere in acute grief. The sample consisted of 75 Portuguese caregivers, mostly women and patients' daughters. The results show that caregivers more involved with patient care bear a greater burden and are more likely to manifest psychopathological symptoms, which persist in acute grief. Moreover, the existence of peritraumatic symptoms seem to contribute significantly to the overall state of distress in acute grief. Social support has a protective effect in the different symptomatologic situations and are closely related to family dynamics. These results suggest the possibility of early identification of the most vulnerable caregivers and the adverse circumstances that affect them.

A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool

The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context. Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated. The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability (κw=0.45-0.75). This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care.

Spirituality among family caregivers in palliative care: an integrative literature review.

Family caregivers experience spiritual and existential concerns while caring for their terminally ill family members. To evaluate and synthesise studies on spirituality among family caregivers in palliative care. An integrative literature review of peer-reviewed articles published between 2000 and 2016. Participants were family caregivers (parents, spouses, relatives or friends) caring for an adult (age>18 years) family member with a terminal illness in a palliative care setting. Data from 26 published research papers were systematically analysed. Five themes were identified regarding spirituality and family caregiving: a close and meaningful connection, spirituality as a way of coping, spiritual needs and expressions among family caregivers, spirituality to transcend fears, and spirituality in family caregivers' decision-making. Nurses are encouraged to explore the spirituality and spiritual experiences of family caregivers to support their spiritual wellbeing while caring for their terminally ill family members.

Leading an intervention for family caregivers-a part of nursing in palliative care.

Professional leadership has been highlighted as an important part of successful intervention delivery. The aim of this study is to explore the narratives of nurses involved in leading a group intervention for family caregivers in palliative care. Nurses were interviewed about their experiences as group leaders in a psycho-educational group intervention, which was delivered at 10 specialised palliative home care settings, with the help of an intervention manual. Data were analysed with interpretive descriptive methodology. Three themes were identified in the analysis: embracing the leading role, developing qualities as a group leader, and professional and personal development. The results showed that the role as group leader initially was a challenge for the nurses, but that they gradually were able to develop the professional and personal skills that were required. The nurses believed that their profession was best suited to lead this kind of supportive intervention.

Short-term and long-term effects of a psycho-educational group intervention for family caregivers in palliative home care - results from a randomized control trial.

Family caregivers in cancer and palliative care often face heavy responsibilities and feel insufficiently prepared for the situation as caregivers. This study evaluates short-term and long-term effects of a psycho-educational group intervention aiming to increase preparedness for family caregiving in specialized palliative home care. The study design was a randomized control trial where family caregivers were allocated either to an intervention or control group. The intervention was delivered as a program including three sessions by health professionals (physician, nurse, and social worker/priest). Family caregivers from 10 specialized palliative home care settings were included. Questionnaires with validated instruments at baseline, upon completion, and 2 months following the intervention were used to measure effects of the intervention. The primary outcome was preparedness for caregiving in family caregivers. In total, 21 intervention programs were delivered, and 119 family caregivers completed all three measurements. The intervention group had significantly increased their preparedness for caregiving in both the short-term and long-term follow-up compared with the control group. The intervention group also reported significantly increased competence for caregiving in short-term but not long. No effects of the intervention were found on rewards for caregiving, caregiver burden, health, anxiety, or depression. The psycho-educational intervention has the potential to be used by health professionals to improve preparedness for caregiving among family caregivers in palliative care both in short and long terms. Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd.

Concurrent Urologic and Palliative Care after Cystectomy for Treatment of Muscle-Invasive Bladder Cancer (FR467-A)

Objectives List the severity of baseline physical and emotional symptoms for patients preoperatively before cystectomy as definitive treatment for muscle-invasive bladder cancer. Describe the outcomes associated with the addition of palliative care offered concurrently in addition to usual care for muscleinvasive bladder cancer. Describe the impact on family caregivers of palliative care offered concurrently with usual care for patients with muscleinvasive bladder cancer. Original Research Background: assessed, and few interventions have been prospectively evaluated using validated instruments. In particular palliative care offered concurrently with surgical oncologic care for patients with bladder cancer has not been studied. Research Objectives: To characterize the impact of palliative care concurrent with usual urologic care for bladder cancer patients undergoing cystectomy. Methods: Prospective, 6-month, serial cohort study comparing 33 participants receiving usual care with cystectomy for muscleinvasive bladder cancer with 30 participants also receiving concurrent palliative care. Patients and family caregivers completed validated symptom assessment and satisfaction surveys preoperatively and 2, 4, and 6 months postoperatively. Results: The intervention group saw improvements in most symptom measures over the 6 months following cystectomy compared with the control group. Depression and anxiety decreased over the 6-month period for intervention patients but increased over this time among controls (p=0.01). Fatigue fell to a minimum for intervention group participants at 4 months, while it peaked at this time for control participants (0.002). Quality of life and posttraumatic growth scores followed a similar pattern, with scores peaking at 4months for the intervention group, while controls reported their lowest scores at this time (p=0.01 and p=0.03, respectively). Changes in pain scores did not reach statistical significance. Neither family caregiver burden nor patient satisfaction showed statistically significant changes over time. Conclusions: Patients who received concurrent palliative care in addition to usual urologic care following radical cystectomy for

Validation of the Family Inventory of Needs (FIN) for family caregivers in palliative care.

Caregivers of cancer patients are faced with significant demands that can seriously impact their physical and mental health. It is important for healthcare professionals to be aware of caregivers' support needs in order for these to be adequately addressed. Our study develops a German version of the Family Inventory of Needs (FIN) and provides a comprehensive evaluation of its acceptability and psychometric properties. Cross-sectional data from 308 participants were taken from the baseline assessment of an ongoing prospective study. Retests were completed by 46 participants approximately one week after baseline. Informal caregivers of terminally ill cancer patients were recruited from three hospitals in Vienna. Questionnaires for hope (IHS), traumatic stress (IES-R), and depression and anxiety (HADS) were employed together with the translated FIN to assess concurrent and discriminant validity. The internal consistency of FIN-Importance had a Cronbach's α of 0.94, and that for FIN-Fulfillment was α = 0.96. Retest reliability for FIN-Importance was r = 0.97, while that for FIN-Fulfillment could not be calculated due to missing responses to this subscale. Concurrent and discriminant validity tests for the scale and the discriminative power of items were adequate. However, missing responses may limit the feasibility of using this scale in research settings. We identified six questions that could be excluded from the scale in order to increase its acceptability and further improve its psychometric properties. Our results suggest that the FIN is suitable for clinical settings. For use in research, we suggest four adaptations to increase the scale's acceptability and psychometric properties. The FIN can be a valuable tool for informing the emotional, physical, and psychological support provided to family carers of people who are terminally ill with cancer.

Educational Programs for Family Caregivers in Palliative Care: A Literature Review

Aim: To analyse the literature about educational programs aimed towards empowering caregivers of patients in palliative care (PC) attending to the conceptual difference between programs and psychosocial interventions. Method: Review of the literature published in English, Portuguese and Spanish languages between 01/2009 and 12/2013, supported by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines; PubMed, Scopus and SciELO were searched for studies about caregiver training programs developed in the PC field. 43 Palliative Care Associations listed in the European Association of Palliative Care (EAPC) PC ATLAS were contacted in order to complement this literature review. Results: Eight studies were identified and analysed concerning subject matter, measurement instruments, location, results, strategy and duration of the programs. All educational programs addressed issues related to the context of end of life; Program duration ranged from three weeks to two years, and took place in the community and in hospital or PC centres; all programs evaluated their respective impact using various measurement instruments. Conclusions: This review testifies the lack of publications regarding programs designed and developed to support family caregivers in PC. It is shown that caregivers benefit from support groups and educational programs to promote information and caregiver training, but perhaps the lack of funding for this kind of interventions can affect the caregiver’s treatment.