Caregiving experiences predict changes in spiritual well-being among family caregivers of cancer patients

AbstractObjective:The aim of this study was to examine the concept of a good death from the perspectives of both the dying person and the family caregiver, as perceived by bereaved family caregivers of advanced cancer patients.Method:The data were gathered from five focus group discussions and one face-to-face qualitative interview conducted over 8 months among 18 bereaved family caregivers recruited from a local hospice. The transcripts of the focus groups and the interview were entered into NVivo Version 8 and were analyzed using the thematic approach.Results:A good death may be understood as having the biopsychosocial and spiritual aspects of life handled well at the end of life. Five major themes were identified. These were preparation for death, family and social relationships, moments at or near death, comfort and physical care, and spiritual well-being. Differences were also noted in what is important at the end of life between the patients and caregivers. Having a quick death with little suffering was perceived to be good by the patient, but the family caregiver wanted to be able to say a final goodbye to the patient. Patients tend to prefer not to die in their children's presence but the children wished to be present for the final moment. In addition, family caregivers reported it was important for them to be able to give the patients permission to die, to feel recognized for the efforts made, and to have had a fulfilling caregiving experience.Significance of results:Whereas there are global attributes of a good death, our findings suggest that patients and family caregivers may define a good death differently. Therefore, there is a need to respect, address, and reconcile the differences, so that all parties may have a good experience at the end of a person's life.

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Palliative care and spiritual well-being in lung cancer patients and family caregivers

Psycho-Oncology ◽

10.1002/pon.3987 ◽

2015 ◽

Vol 25 (12) ◽

pp. 1448-1455 ◽

Cited By ~ 36

Author(s):

Virginia Sun ◽

Jae Y. Kim ◽

Terry L. Irish ◽

Tami Borneman ◽

Rupinder K. Sidhu ◽

...

Keyword(s):

Lung Cancer ◽

Palliative Care ◽

Cancer Patients ◽

Family Caregivers ◽

Well Being ◽

Lung Cancer Patients ◽

Spiritual Well Being

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Exploring the associations between spiritual well-being, burden, and quality of life in family caregivers of cancer patients

Palliative & Supportive Care ◽

10.1017/s1478951518000160 ◽

2018 ◽

Vol 17 (03) ◽

pp. 294-299 ◽

Cited By ~ 3

Author(s):

Roberta Spatuzzi ◽

Maria Velia Giulietti ◽

Marcello Ricciuti ◽

Fabiana Merico ◽

Paolo Fabbietti ◽

...

Keyword(s):

Quality Of Life ◽

Cancer Patients ◽

Family Caregivers ◽

Caregiver Burden ◽

Short Form ◽

Well Being ◽

Medical Outcomes ◽

Spiritual Well Being ◽

Outcomes Study

AbstractObjectiveThe spiritual dimension is important in the process of coping with stress and may be of special relevance for those caring for cancer patients in the various phases of caregivership, although current attention is most prevalent at the end of life. This study explores the associations among spiritual well-being (SWB), caregiver burden, and quality of life (QoL) in family caregivers of patients with cancer during the course of the disease.MethodThis is a cross-sectional study. All participants (n = 199) underwent the following self-report questionnaires: the SWB-Index, the Medical Outcomes Study Short Form, and the Caregiver Burden Inventory (CBI). SWB scores were dichotomized at a cutoff corresponding to the 75th percentile. Statistical analyses were made using the Student t or by chi-square test to compare high and low SWB groups.ResultThe high SWB group reported significantly better Medical Outcomes Study Short Form scores in bodily pain (p = 0.035), vitality (p < 0.001), social activities (p = 0.001), mental health (p < 0.001), and in standardized mental component subscales (p < 0.001) than the low SWB group. No significant differences were detected between the two SWB groups in physical activity, physical role, general health, emotional status, and standardized physical component scale. The high SWB group also had better CBI scores in the physical (p = 0.049) and developmental burden (p = 0.053) subscales. There were no significant differences in the other CBI scores (overall and sections).Significance of resultsThis study points out that high SWB caregivers have a more positive QoL and burden. Knowledge of these associations calls for more attention on the part of healthcare professionals toward spiritual resources among family cancer caregivers from the moment of diagnosis and across the entire cancer trajectory.

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Exploring the relationship between spiritual well-being and death anxiety in patients with gynecological cancer: a cross-section study

BMC Palliative Care ◽

10.1186/s12904-021-00778-3 ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Yue Feng ◽

Xingcan Liu ◽

Tangwei Lin ◽

Biru Luo ◽

Qianqian Mou ◽

...

Keyword(s):

Cancer Patients ◽

Cross Section ◽

Death Anxiety ◽

Religious Beliefs ◽

Gynecological Cancer ◽

Well Being ◽

Life Questionnaire ◽

Section Study ◽

Spiritual Well Being ◽

The Relationship

Abstract Background In recent years, spiritual well-being has gradually gained the attention of health care providers in China, especially those in oncology departments, who have recognized the importance of improving spiritual well-being in cancer patients. Since most of the current research on spiritual well-being has been carried out in areas with religious beliefs, this study was conducted in the context of no development of formal religion. The purpose of this study was to explore the relationship between death anxiety and spiritual well-being and the related factors of spiritual well-being among gynecological cancer patients. Methods This cross-section study was conducted among 586 gynecological cancer patients. The European Organization for Research and Treatment for Cancer Quality of Life Questionnaire-spiritual well-being32 (EORTC QLQ-SWB32) and Templer's Death Anxiety Scale (T-DAS) were used to measure spiritual well-being and death anxiety. The Multiple Linear Regression Model was used to determine the relationship between spiritual well-being and death anxiety. Results For all participants, the highest QLQ-SWB32 centesimal score was 75.13 on the Relationship with Other scale, and the lowest was 60.33 on the Relationship with Someone or Something Greater Scale. The mean Death Anxiety score was 5.31 (SD 3.18). We found that Relationship with Someone or Something Greater was the only scale not associated with death anxiety. Overall, patients with lower death anxiety have a higher level of spiritual well-being. Besides, a high Relationship with Other score was associated with living with a partner (B = 2.471, P < 0.001) and married (B = -6.475, P = 0.001). Patients with higher Global-SWB were retired (B = 0.387, P = 0.019). Conclusions Our study found that the spiritual well-being of patients with gynecological cancer in China was no worse than in other countries with religious beliefs and patients with lower death anxiety have a higher level of spiritual well-being. Clinical staff should pay attention to the spiritual health of cancer patients, and spiritual care should be regarded as an essential element in cancer care.

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Associations between caregiving worries and psychophysical well-being. An investigation on home-cared cancer patients family caregivers

Supportive Care in Cancer ◽

10.1007/s00520-015-2854-y ◽

2015 ◽

Vol 24 (2) ◽

pp. 857-863 ◽

Cited By ~ 4

Author(s):

Veronica Zavagli ◽

Elisabetta Miglietta ◽

Silvia Varani ◽

Raffaella Pannuti ◽

Gianni Brighetti ◽

...

Keyword(s):

Cancer Patients ◽

Family Caregivers ◽

Well Being

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A Novel Narrative E-Writing Intervention (NeW-I) for Parents of Children with Chronic Life-Threatening Illnesses: Protocol for an Open-Label Randomized Controlled Trial

10.21203/rs.2.12263/v2 ◽

2019 ◽

Author(s):

Andy Hau Yan Ho ◽

Oindrila Dutta ◽

Geraldine Tan-Ho ◽

Toh Hsiang Benny Tan ◽

Casuarine Low Xinyi ◽

...

Keyword(s):

Palliative Care ◽

Family Caregivers ◽

Controlled Trial ◽

Well Being ◽

Writing Intervention ◽

Open Label ◽

Randomized Controlled ◽

Life Threatening Illness ◽

Spiritual Well Being ◽

Life Threatening

Abstract Background: Conventionally, psycho-socio-spiritual interventions for parents of children with chronic life-threatening illness begin post child loss. Pre-loss interventions addressing anticipatory grief can improve holistic well-being and grief outcomes among family caregivers of dying patients. Globally, palliative care strives to holistically support patients and their caregivers at the end-of-life. However, inadequacies exist both globally and in Singapore in providing culturally sensitive psycho-socio-spiritual support to parents whose children need pediatric palliative services. Aim: A novel evidence-based Narrative e-Writing Intervention (NeW-I) is developed to address this gap. NeW-I is a strength-focused, meaning-oriented and therapist-facilitated mobile app and web-based counseling platform that aims to enhance quality of life, spiritual well-being, hope and perceived social support, and reduce depressive symptoms, caregiver burden and risk of complicated grief among parents facing their child’s chronic life-threatening illness. Methods: The design of NeW-I is informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of bereaved parents of children with chronic life-threatening illness. The online NeW-I platform and the relative anonymity it offers to participants is sensitive to the unique cultural needs of Asian family caregivers who are uncomfortable with emotional expression even during times of loss and separation. Together with four local pediatric palliative care providers, NeW-I is implemented in Singapore as an open-label pilot randomized controlled trial with 72 parents. Potential effectiveness of NeW-I and accessibility and feasibility of implementing and delivering the intervention are assessed. Discussion: NeW-I aspires to improve psycho-socio-spiritual well-being of parents facing their child’s chronic life-threatening illness through a structured cyber-counseling platform, thereby enhancing holistic pediatric palliative care and parental bereavement support services. Findings from this pilot study will inform the development of a standardized NeW-I protocol and further research to evaluate the efficacy of NeW-I in Singapore and in other Asian communities around the world.

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The lived experience of spiritual well-being amongst family caregivers of persons with dementia on palliative care

Geriatric Nursing ◽

10.1016/j.gerinurse.2020.11.005 ◽

2021 ◽

Vol 42 (1) ◽

pp. 65-71

Author(s):

Michael L. Baumgardner ◽

Ann M. Mayo

Keyword(s):

Palliative Care ◽

Lived Experience ◽

Family Caregivers ◽

Well Being ◽

Spiritual Well Being

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A pilot study of transformation, attributed meanings to the illness, and spiritual well-being for terminally ill cancer patients

Palliative & Supportive Care ◽

10.1017/s1478951508000539 ◽

2008 ◽

Vol 6 (4) ◽

pp. 335-340 ◽

Cited By ~ 14

Author(s):

Michiyo Ando ◽

Tatsuya Morita ◽

Virginia Lee ◽

Takuya Okamoto

Keyword(s):

Cancer Patients ◽

Terminally Ill ◽

Well Being ◽

Clinical Psychologist ◽

Semistructured Interview ◽

Search For Meaning ◽

Terminally Ill Cancer Patients ◽

Spiritual Well Being ◽

Positive Meaning ◽

High Level

ABSTRACTObjective:The present study investigated what types of transformation terminally ill cancer patients experienced from diagnosis until the terminal stage, what meanings terminally ill cancer patients attributed to their illness, and whether or not those who attributed positive meaning to their illness achieved high levels of spiritual well-being as a preliminary study.Method:Ten terminally ill cancer patients in the hospice wards of two general hospitals participated. A clinical psychologist conducted a semistructured interview with the patients individually for about 60 min. Patients completed the FACIT-Sp and HADS before the interview and talked about the meanings of cancer experience. The contents of the interviews were analyzed qualitatively. Patients were separated into high and low levels of spiritual-well being by the median of FACIT-Sp scores.Results:Three types of transformation were extracted: “group with peaceful mind,” “group with both positive attitude and uneasy feeling,” and “groups with uneasy feeling.” As attributed meanings to the illness, five categories were extracted: “positive meaning,” “natural acceptance,” “negative acceptance,” “search for meaning,” and “regret and sorrow.” Patients in the high level spiritual well-being group attributed the meaning of illness to “positive meaning” and “natural acceptance,” and those in the low level spiritual well-being group attributed it to “regret and sorrow” and “search for meaning.”Significance of results:Some Japanese terminally ill cancer patients experienced positive transformation, and patients who attributed “positive meaning” and “natural acceptance” to their illness experience achieved high levels of spiritual well-being.

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Individual Meaning-Centered Psychotherapy for Advanced Cancer Patients

10.1093/med/9780199837229.003.0003 ◽

2017 ◽

Author(s):

William Breitbart ◽

Wendy G. Lichtenthal ◽

Allison J. Applebaum ◽

Melissa Masterson

Keyword(s):

Clinical Trials ◽

End Of Life ◽

Cancer Patients ◽

Advanced Cancer ◽

Therapeutic Intervention ◽

Well Being ◽

Existential Psychology ◽

Advanced Cancer Patients ◽

Spiritual Well Being ◽

Existential Concerns

Among the advanced cancer population, existential concerns are major issues that promote significant distress. For patients who are facing death, meaning and the preservation of meaning are not only clinically and existentially important but also central concepts to a therapeutic intervention. Based on Viktor Frankl’s logotherapy and the principles of existential psychology and philosophy, “meaning-centered psychotherapy” was developed to help patients with advanced cancer sustain or enhance a sense of meaning, peace, and purpose in their lives. This chapter provides an overview of work developing and testing individual meaning-centered psychotherapy (IMCP). It provides an overview of the session content in the IMCP intervention. It also presents findings from clinical trials, which support the efficacy of IMCP as an intervention to increase a sense of meaning, spiritual well-being, and hope while decreasing end-of-life despair. Furthermore, it presents difficult scenarios that may arise when delivering IMCP for clinicians interested in this work.

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