Purpose: The aim of this study was to gain more insight into the psychosocial well-being of the recently bereaved spouses who took care of their partners with cancer.
Method: A qualitative study was developed, taking a phenomenological approach. Eleven former caregivers and spouses of patients who died of cancer at, or after, the age of 64, participated in individual in-depth interviews. Only caregivers who were bereaved for a minimum of three months and maximum of one year were interviewed. The analysis of the data was based on the Qualitative Analysis Guide of Leuven.
Results: The first moments of bereavement included feelings of disbelief, regret and relief. A feeling of being overwhelmed during this time was reported by some, others sought distraction from their grief. Loneliness, emotional fluctuations and a sense of appreciation for the support of loved ones were dominant themes. Also, gratitude and the importance of consolation played a role in the participants' well-being. When participants addressed the matter of moving forward in life, most explained how they wanted to keep the memories of their partner alive while rebuilding their lives.
Conclusions: The present study offers insight into the experiences of the bereaved spousal caregiver and highlights the need of social support during the bereavement period. All participants expressed loss-oriented and restoration-oriented coping strategies. Also, loneliness is considered a dominant feeling throughout the bereavement period. Social contact can ease these feelings of loneliness through providing either distraction or possibilities to share the burden. This paper emphasized the importance of improving access to healthcare professionals during bereavement.
Population ageing has rapidly increased the number of people requiring end-of-life care across the globe. Governments have responded by promoting end-of-life in the community. Partly as a consequence, older spouses are frequently providing for their partner’s end-of-life care at home, despite potentially facing their own health issues. While there is an emerging literature on young-old caregivers, less is known about spouse carers over 75 who are likely to face specific challenges associated with their advanced age and relationship status. The aim of this review, therefore, is to identify and synthesise the literature concerning the experiences of caregiver’s aged 75 and over whose partner is approaching end-of-life. We conducted a mixed-method systematic review and narrative synthesis of the empirical literature published between 1985 and May 2019, identified from six databases: Medline, PsychINFO, Cumulative Index to Nursing and Allied Health Literature, Embase, Sociological Abstracts and Social Service Abstracts. Hand searching and reference checking were also conducted. Gough’s Weight of Evidence and Morgan’s Feminist Quality Appraisal tool used to determine the quality of papers. From the initial 7819 titles, 10 qualitative studies and 9 quantitative studies were included. We identified three themes: 1) “Embodied impact of care” whereby caring was found to negatively impact carers physical and psychological health, with adverse effects continuing into bereavement; 2) “Caregiving spouse’s conceptualisation of their role” in which caregiver’s navigated their self and marriage identities in relation to their partner’s condition and expectations about gender and place; 3) “Learning to care” which involved learning new skills and ways of coping to remain able to provide care. We identified a recent up-surge in published papers about very old spousal caregivers, which now comprise a small, medium-quality evidence base. This review outlines a range of potential lines of inquiry for future research including further clarification of the impact of caregiving on the likelihood of mortality, the incidence of men and women providing end-of-life care amongst this age group, and the role of anticipatory grief in shaping their perceptions of their relationship and their own longevity.
Objective: Mechanical ventilation, a measure of life-sustaining treatment (LST), may not be helpful and can be devastating for patients with terminal illness. We explored the effects of demographic characteristics, attitude, subjective norms, and perceived behavioral control on the behavioral intentions of primary caregivers to withdraw LST of long-term ventilator-dependent patients.
Methods: Primary caregivers of ventilator-dependent patients in the respiratory care units of six hospitals participated in the study. A cross-sectional design including the domains of attitude, subjective norms, perceived behavioral control, and behavioral intention was adopted.
Results: Valid data for 99 participants were analyzed using logistic regression. Religious belief, a spousal relationship with the patient, item 5 in subjective norms, and item 5 in perceived behavioral control positively influenced the intention to withdraw patient LST.
Conclusions: Religious beliefs, a spousal relationship, perceived behavioral control (confidence in relieving patient suffering), and the opportunity of current favorable subjective norms are major determinants of the intention to withdraw patients’ LST.
Practice Implications: Shared decision-making with the kin and primary caregivers of long-term ventilator-dependent patients at the end of life is crucial.
BACKGROUND: Palliative nursing care provides the best possible quality of life (QoL) for patients who face life-threatening conditions, such as breast cancer, and their families. It seems that coping with breast cancer can affect couples' QoL. Hence, this study aimed to assess the potential role of ways of coping (WOC) in QoL among husbands of women with breast cancer.
METHOD: In this cross-sectional study, 150 men whose wives were affected by non-metastatic breast cancer and were at least 4 months post-diagnosis, were recruited. The Persian version of the WOC questionnaire (WOCQ) and the World Health Organization's QoL brief questionnaire (WHOQoL-BREF) were used to measure WOC and QoL. ThePearson correlation test was applied to assess bivariate correlation of the variables.
FINDINGS: A significant direct correlation was found between the total WHOQoL-BREF score and all subscales of WHOQ, except escape-avoidance coping (r=-0.017, P=0.830). Most dimensions of the WHOQoL-BREF and WOCQ subscales were correlated significantly and directly. Nevertheless, escape-avoidance coping had a significant indirect correlation with the physical dimension of WHOQoL-BREF (r=-0.220, P=0.007).
CONCLUSION: Findings indicated a need for coping-based interventions in palliative nursing to improve QoL in husbands of women with breast cancer.
BACKGROUND: Providing care for patients with advanced cancer is often the responsibility of the partner. Being confronted with an incurable cancer diagnosis can be highly disruptive for the patient's partner and can be considered a potentially traumatic event. However, most caregivers seem to adapt well during the process of providing care. This finding is in line with the concept of resilience in literature: a dynamic process of adapting well, resulting from the interplay between intrinsic and extrinsic resources and risks. Resilience is age-related, with the elderly population being higher in resilience as compared to the younger generation. However, resilience has been understudied in middle-aged caregivers.
AIM: To explore what intrinsic and extrinsic resources facilitate or hamper resilience in the middle-aged partner of a patient with incurable cancer.
METHODS: Nine middle-aged partners of patients who died at home of cancer were selected and interviewed in depth within the first year following the death of their partner. A thematic analysis utilizing an inductive approach was conducted.
FINDINGS: Resilience was challenged by the partner's diagnosis of incurable cancer. All participants made use of a set of interacting, caregiver-specific and context-related resources, facilitating a resilient process and leading to positive feelings and even personal growth. The partners demonstrated individual competences: adaptive flexibility, positivism, a sense of self-initiative and adaptive dependency. Furthermore, they relied on their context: cancer-related professionals and relatives. Context and situation interact continuously. The resulting dynamics were based on the context-availability, meaningful relationships and the patient's role.
CONCLUSION: A resilient trajectory results from an interplay between individual and contextual resources. To build resilience in middle-aged partners of patients with incurable cancer, health care professionals should address all available resources. Moreover, they should be aware of being part of the caregiver's context, a complex adaptive system that can be either resilience-supporting or -threatening.
The current article focused on examining the potential benefits of the End-of-Life (EoL) informal caregiving, communication, and ritualistic behaviors in adaptation to the conjugal bereavement across two different cultural-background contexts: France and Togo, West Africa. The investigation adopted a transnational approach including a total of 235 bereaved spouses. Despite the variation in the length of time since death, no significant difference was found between the Togolese and French bereaved with respect to the level of complicated grief symptoms. However, the Togolese bereaved perceived a significant postloss growth, fostered by EoL communication with the dying and the performance of ritualistic behaviors. In the French sample, bereaved individuals who had experienced more intimate communication with their dying spouse reported a high level of postloss growth. Moreover, findings showed that EoL caregiving without ritualistic support or communication is associated with poor postbereavement outcomes. These findings suggest a clinical need to promote informal caregiving to the dying, communication with the dying, and ritualistic support during the process of dying as entangled components of EoL care.
Context: We previously developed the reintegration model to describe the adjustment process for individuals at the end of life. However, caregivers and loved ones also require significant support and must work to reimagine their relationship with one another.
Objectives: We sought to develop a dyadic version of the reintegration model that delineates key parts of the adjustment process that occur between the patient and another significant person rather than as two separate individuals.
Methods: We refined an initial conceptual model of this dyadic process with findings from a narrative literature review on spousal dyadic mutuality. We assessed emergent themes regarding dyadic adjustment from the literature for their fit with our original reintegration model and through consensus discussion, applied the findings to a final proposed conceptual model of dyadic reintegration at the end of life.
Results: Examples of dyadic adjustment in the literature relate to the comprehension, creative adaptation, and reintegration processes described in the original reintegration model. Evidence also supported three substantive additions in the new dyadic model: (1) shared understanding that the harmony of the dyad is interrupted; (2) consideration of the "we" (the dyad) and the "I" (the individual) in mutual reflection to create a shared narrative; and (3) emphasis on relationship as a factor impacting adjustment processes.
Conclusions: Available evidence supports interdependent relationships between members of dyads for the three adaptation processes of comprehension, creative adaptation, and reintegration in the model. This dyadic reintegration model can be useful in clinical practice to support dyads facing life-limiting illness.
Introduction: Motor neuron disease (MND) is a progressive neuromuscular disorder that can have significant and debilitating impact on the affected patient and families. Spouses are the primary carers for persons with MND in India, and the life of the person with MND and their spouse is never the same after the diagnosis.
Aim: The objective was to explore the lived experience of spouses of persons diagnosed with MND.
Methods: A qualitative exploratory study with three-point interviews was conducted with spouse caregivers of two persons diagnosed with MND who were receiving treatment from a national tertiary referral care center for neurological disorders. All the patients were diagnosed as definite MND according to the modified El Escorial criteria. With the spouses, in-depth interviews were conducted at their home, lasting on an average of 1 hour using a semi-structured interview guide (prompts). Interpretative phenomenological analysis was used to derive themes from the interviews.
Results: The major themes emerged from the analysis were meaning of MND which contained the subthemes of delay in diagnosis and deterioration, psychological response across illness trajectory, relationship with the subthemes of changing roles in being acarer, marital relationship, to be seen as doing "right," and communication; adaptation with the subthemes of coping strategies and support system and life without the loved one.
Conclusion: The changes in the lives of spouses and in strategies for caring the partner with deterioration of symptoms in the illness trajectory are explained in this study. The palliative approach in the management of MND has to take into account, the experiences and needs of carers since care happens at home.
Purpose: Many patients with advanced cancer choose palliative chemotherapy. Considering its purpose of palliation and not treatment, it is important to consider the life of family caregivers. Family caregivers who experience bereavement undergo extreme stress, which is particularly high among patients’ spouses. The present study aims to clarify the experiences of the spouses of patients at the hospitals in Japan after the notification of palliative chemotherapy discontinuation until bereavement.
Method: We interviewed the spouses of 13 patients who received palliative chemotherapy using a semistructured interview guide. Each spouse was interviewed twice. The interviews were transcribed verbatim, and key concepts were identified using a grounded theory analytic approach.
Results: After the hospital's recommendation for palliative chemotherapy discontinuation, the spouses had “bewilderment over having to discontinue palliative chemotherapy” and experienced “difficulty in facing bereavement.” The spouses having “difficulty to give up hope for the patient's survival,” felt “bafflement over caregiving at the terminal stage,” which would be their responsibility in the future. Further, they had “hesitation in being honest to the patient” and were engaged in “knowing how to live with the patient until bereavement.“
Conclusion: Nurses need to encourage the patients and spouses to honestly express how they feel from the early stages of palliative chemotherapy. Furthermore, nurses should help spouses with how they face bereavement. This result may help prevent anticipatory grief, which may lead to excessive stress and emotional distress on the family caregivers.
Cancer impacts spouse caregivers, especially when couples engage in dyadic coping around the cancer. Communication is a key factor in this process. Our goals were to describe cancer-related communication between advanced cancer patients and their spouse caregivers, and to describe how dyadic communication patterns are related to caregivers' reported burden and preparedness for caregiving. Caregivers completed measures of caregiver burden and preparedness for caregiving. Then, the patient and caregiver were asked to interact with each other in two structured discussions: a neutral discussion and a problem discussion focused on cancer. Discussions were coded using the Rapid Marital Interaction Coding System (RMICS2). Caregivers reported moderate levels of preparation and burden. Greater caregiver hostility communication predicted higher levels of caregiver burden, whereas greater caregiver dysphoric affect communication predicted lower levels of caregiver burden. Whereas positivity was more common than hostility in couples' communication, patient hostility was a significant predictor of caregiver preparedness. Patient neutral constructive problem discussion was also associated with increased caregiver preparedness. Caregiver outcomes are an understudied component to dyadic cancer research. Our paper describes observational data on cancer-related communication between caregivers and advanced cancer patients and communication's influence on caregiver outcomes. This work provides the foundation for future evidence-based communication interventions that may influence both patient and caregiver outcomes.
This work aims to integrate previous research perspectives on terminal well-being decline and partner bereavement by investigating the codevelopment of life satisfaction in the years preceding the death of one partner. We analyzed longitudinal data from the German Socio-Economic Panel Study (N = 1,450 couples) and applied dyadic multilevel models to estimate both partners' trajectories of life satisfaction and to reveal the pathways of well-being transmission in couple members approaching [partner] death. Findings were compared with a propensity-score-matched control sample of couples in which neither partner died during the study. We found that to-be-deceased and to-be-bereaved partners experienced increasing disparities in their trajectories of life satisfaction in the years before [partner] death: Although both partners exhibited significant and accelerated declines in life satisfaction, these declines were more pronounced in to-be-deceased individuals. In the control sample, we also identified significant and accelerated declines in life satisfaction but these declines were less intense and they did not differ between partners. Regarding between-partner correlations, we observed that couples approaching [partner] death experienced weaker interdependencies in their declines of life satisfaction. Finally, and concerning the pathways of well-being transmission, we found that life satisfaction was significantly transmitted between partners and the strength of this effect did not differ between the samples. These findings suggest that the years before [partner] death are characterized by distinctive patterns of change and interdependence in life satisfaction. Future studies may explore the sources of increasing between-partner disparities in life satisfaction in an end-of-life relationship context.
Objective: Home-visit nurses play a key role in supporting the spouses of terminal cancer patients and encouraging positive perspectives of the caregiving experience. This study aimed to develop a scale to support nurses in self-assessing their practice around this important role.
Design: Cross-sectional questionnaire study.
Setting:The Home Nursing Scale to Help Spousal Caregivers (HNS-HSC) questionnaire for self-assessment of home-visit nursing to spouses was developed based on interviews with spouses and literature reviews.
Participants: Overall, 1500 home-visit nurses nationwide who had experience in supporting spousal caregivers and their patients in the predeath and postdeath periods were approached for participation.
ain outcome measure: Planned exploratory and confirmatory factor analyses were used to assess the underlying dimensions of the HNS-HSC; Cronbach’s a was used to determine the reliability. The Japanese version of Frommelt Attitude Toward Care of the Dying Scale Form B (FAT-COD-B-J) and Grief Care scale were administered to assess convergent and discriminant validity.
Results: Exploratory and confirmatory factor analyses identified 26 items on five factors: ‘helping spouses plan their futures’ ‘helping caregivers alleviate any regrets regarding their care’, ‘understanding the bond between a couple’, ‘providing support for anticipatory grief’, and ‘addressing spousal caregivers’ emotions after their spouses’ deaths’. The final model showed acceptable goodness-of-fit indices. The Cronbach’s a for the entire scale was 0.949 and exceeded 0.822 for each factor. The correlation coefficient with the FAT-COD-B-J, which served as an external validation, was 0.35. The correlation coefficients for the three grief care scales were 0.64, 0.45 and 0.72, respectively.
Conclusions: This scale is a reliable and valid tool for visiting nurses to self-assess their knowledge, skills and practice around helping spousal caregivers. By using this scale, it is expected to change nursing practice in pursuit of improving quality of life of spouses.
Most caregiving literature has focused on women, who have traditionally taken on caregiving roles. However, more research is needed to clarify the mixed evidence regarding the impact of gender on caregiver/patient psychological outcomes, especially in an advanced cancer context. In this paper, we examine gender differences in caregiver stress, burden, anxiety, depression, and coping styles, as well as how caregiver gender impacts patient outcomes in the context of advanced cancer. Eighty-eight patients with advanced cancer and their caregivers completed psychosocial surveys. All couples were heterosexual and most caregivers were women (71.6%). Female caregivers reported significantly higher levels of perceived stress, depression, anxiety, and social strain compared with male caregivers, and female patients of male caregivers were more likely to use social support as a coping style compared with male patients of female caregivers. These findings highlight the potential differences between male and female caregivers' needs and psychological health.
A career in medicine exposes physicians to chronic illness, disability, death and dying, loss, sadness, and grief. It is doubtful, however, that such experiences with patients can match that of the physician’s taking care of his or her own loved one.
Caring for patients in a crowded docket allows for brief, episodic encounters, with little breathing space between patients. Being the physician caretaker of a loved one with terminal illness and anticipating loss, however, makes the caretaking relationship continuous. References to “the 36-hour day” characterize the demands of this perpetual work.1
OBJECTIVES: To understand how bereaved spousal caregivers of persons with dementia perceive and respond to changes over the course of their spouse's disease, from diagnosis into bereavement.
DESIGN: Qualitative interview study with convenience sampling and thematic analysis approach.
PARTICIPANTS: Participants included eight women and two men (n=10) who had been spousal caregivers for a person with dementia prior to his/her death. Participants were older adults who self-reported good health and were bereaved longer than a year.
SETTING: Data collected in a small Canadian prairie city between fall 2014 and winter 2015.
FINDINGS: Two overarching themes were developed as important components of participants' caregiving journey: emotional reactions to change and variation in social connectedness throughout the caregiving and bereavement journey. Four key sub-themes developed through the analysis of emotional reactions to events: memorable grief overshadows persistent grief, a progressive feeling of hopelessness and overwhelmed, relief is common but hidden and gratitude is a milestone in a constructive bereavement. Three key variations of social connectedness throughout the caregiving and bereavement journey were developed: the importance of social inclusion throughout a caregiving and bereavement journey, the repeated loss of companionship and withdrawing from social interactions is contingent on needs.
CONCLUSIONS: The findings suggest that emotional changes throughout caregiving and bereavement are not linear. The need for support from family, friends and new social supports is influential in enabling the caregiver to move forward during caregiving and bereavement.
The loss of a loved one is often associated with “death from a broken heart” for the survivor, and there is evidence that shows that widowers and widows are at risk for higher morbidity and mortality than the general population. This systematic review will summarize the physical and physiological health outcomes of spousal bereavement. A systematic database search was conducted, and 38 studies were analyzed. The majority of studies found a statistically significant and positive association between spousal bereavement and adverse physical and physiological health outcomes such as inflammation, cardiovascular risk, chronic pain, and mortality.
OBJECTIVE: How do caregivers' life satisfaction shift upon the recovery of an ill spouse? Paradoxically, there is a greater increase in life satisfaction upon death than recovery of a spouse. Our analysis explores this paradox.
METHOD: We follow the two groups of exiting caregivers longitudinally for four years from when the partner is still in need of care until the death (N= 152) or recovery (N= 112) of a previously ill partner, comparing their trajectory of life satisfaction. We use the years 2001-2016 of the German-Socio-Economic Panel Study and a growth-curve analysis.
RESULTS: Contrary to our expectations, bereaved caregivers experience a significantly stronger increase in life satisfaction than spouses whose partners recover from a serious illness, even when we stratify by age, gender and initial life satisfaction to account for significantly different subsample composition. Surprisingly, life satisfaction remains unchanged when the partner recovers. Only if a heavy burden in terms of unpaid care and housework hours or prior care need is lifted, do we observe an increase in life satisfaction among spouses with recovering partners, which is like the one experienced by bereaved caregivers.
Witnessing end-of-life suffering of loved ones is an underappreciated stressor that may affect caregiver bereavement. We interviewed 61 spousal caregivers of hospice patients who died within the past 6–18 months. Higher rumination about suffering and lower feelings of relief was related to poorer well-being. Rumination by caregivers about end-of-life suffering was an important predictor of depression and complicated grief. Most caregivers viewed the death as at least in part a relief. One important focus of grief support may be to help caregivers find productive ways to avoid rumination and use other forms of coping and to acknowledge feelings of relief.
The death of a partner may be stressful for unmarried intimate partners as they lack legal status vis-à-vis the partner, and, thus, lack sufficient cultural support. This qualitative study examined the meaning attributed to the loss by 12 Israeli bereaved intimate partners of fallen soldiers. Through applying a constructivist-narrative methodology, we derived three clusters from interviews with the intimate partners: (a) The relationships never ended – “an unfinished business,” (b) The need to conceal the relationships – “a hidden wound,” and (c) The relationship guides their lives – “a compass.” Practical implications were discussed.