Family caregivers making life-sustaining treatment decisions: factors associated with role strain and ease

Although recent studies have focused on life-sustaining treatment (LST) decision-making by families, research has not examined such decision-making as an aspect of ongoing caregiving by family caregivers. This article focuses on factors associated with family caregiver role strain and ease in LST decision-making. Using content analysis, factors were derived from interview data gathered from 17 family caregivers who had made LST decisions for 16 elderly ill relatives. The factors are incorporated in a framework, The Family Caregiving Process in Making LST Decisions for Elderly Ill Relatives, and fall under four key roles--caregiver, elderly ill relative, other family members, and health care providers. Factors affecting the strain and ease felt by family caregivers exist not only during the actual decision-making period, but also arise during the days, months, and years prior to the event and continue on after the LST decisions have been made. Nurses' knowledge of these factors can help nurses decrease family caregiver strain and increase ease during the family caregiver LST decision-making process.     

The attitudes of Chinese family caregivers of older people with dementia towards life sustaining treatments

AIM: This paper is a report of a study to examine attitudes towards life-sustaining treatment in family caregivers of older Chinese people with dementia. BACKGROUND: Deferring decisions about life-sustaining treatments to surrogate decision-makers is common among older people with dementia. However, surrogate decision-makers frequently lack knowledge about disadvantages and benefits of treatments and do not understand the principles of surrogate decision-making. METHOD: A total of 51 Chinese family caregivers were interviewed during 2003 and 2004. The interview included an assessment of their knowledge about cardiopulmonary resuscitation and tube feeding, a questionnaire to assess their anticipated decisions for four treatments (cardiopulmonary resuscitation, artificial ventilation, tube feeding and antibiotic administration) if the older relative suffered critical illness or irreversible coma, and their comfort and certainty in making such decisions. FINDINGS: Family caregivers displayed poor knowledge about life-sustaining treatments, with 30 (59%) and 13 (26%) unable to name any feature of cardiopulmonary resuscitation and tube feeding, respectively. Most relied on their own views in decision-making rather than on what they thought their relative would have wanted. Most family caregivers were reluctant to forgo treatments. Nursing home residence predicted family caregivers' willingness to forgo artificial ventilation for critical illness. Financial burden predicted inclination to forgo antibiotics for critical illness and irreversible coma, as well as tube feeding in irreversible coma. CONCLUSION: More dialogue and education are needed about end of life issues in the early phase of dementia. Nurses should be aware of the cultural implications of surrogate decision-making for Chinese family caregivers.     

A process of decision making by caregivers of family members with heart failure

Heart failure (HF) is a major cardiovascular problem and the number of people living with HF continues to climb. Throughout the illness continuum, patients and their family caregivers are involved in decision making. As the illness worsens and patients can no longer make decisions, decision making becomes the responsibility of their caregivers who may have little preparation for the role. The purpose of this grounded theory study was to examine how caregivers of family members with HF make decisions. A nonlinear decision-making process consisting of several actions was identified, which included actualizing; seeking input, information, or support; reflecting; choosing; evaluating; and validating the decision.     

Role integration and perceived health in Asian American women caregivers

In this study, role involvement, role integration (including role stress and role satisfaction), and perceived health were examined in 50 Asian American women who were caregivers of aging parents in addition to being wives, mothers, and employees. Their mean age was 47.8 years. Twenty-nine of the participants were Chinese and 21 Filipino, with an average length of caregiving for each group of 11 years. All participants were born outside the United States. Instruments used in the study were translated and back-translated into Chinese and Tagalog and tested for validity and reliability. The association of role involvement, role integration, role stress, and role satisfaction with perceived physical and psychological health in the combined and separate groups was examined. Role involvement was not associated with health in the combined group of caregivers but was associated with overall health in the sample of Chinese women. Role integration was positively associated with all three perceived health measures in the Filipino group but not in the Chinese group. Role satisfaction was consistently high in both groups. Role satisfaction and psychological well-being were significantly correlated for the combined group and for the Filipino caregivers. Total role stress was significantly correlated with overall health and current health only in the combined group. Thus, support that helps to decrease role stress and to increase role satisfaction may be more effective than efforts to decrease the extent of role involvement.     

Correlates of consequences of intergenerational caregiving in Taiwan

AIM: This paper is a report of a study to test a theoretical model of factors related to consequences of intergenerational caregiving among Taiwanese caregivers of cognitively impaired ageing relatives. BACKGROUND: With the ageing of the population worldwide, care of elders has become a pressing issue. Intergenerational caregiving behaviours may reflect cultural values and beliefs, but create conflict for adult children between traditional obligations to ageing parents and the capacity to provide care. METHODS: Adult caregivers (n = 130) of cognitively impaired ageing relatives were recruited from three home care agencies in northern Taiwan between September 2003 and February 2004. Role and attachment theories were combined to extend the understanding of the consequences of intergenerational caregiving. RESULTS: Caregiving consequences (role strain and role reward) were not polar opposites on a unidimensional continuum. Caregiver role conflict and role performance had positive relationships with role strain, whereas caregiving resources and role expectation had an inverse relationship. For caregiver role reward, only role performance and secure-attached style were positively correlated. Role demand was not a statistically significant predictor of either role strain or role reward. Furthermore, secure-attached style explained additional variance in role strain and role reward. Moderating effects involving secure attachment with other predictors of role strain and role reward were supported. CONCLUSION: By incorporating role and attachment theories, our model gives a more complete view of intergenerational caregiving in an Asian culture. These findings may be applicable to other countries with Chinese populations.     

Decision making by families of older adults with advanced cognitive impairment: spirituality and meaning

This qualitative study investigated the decision making of family members of institutionalized older adults with advanced cognitive impairment. Eight focus groups were conducted with 39 family caregivers at Minnesota nursing homes. Participants described their beliefs and values as central in their decision making; many said their spirituality provided guidance. Family members spontaneously described finding meaning in their decision-making roles. Many decision makers caring for their relatives with advanced cognitive impairment invoke their spirituality to guide relationships and decisions, creating meaning in the process.     

Patient participation in decision making at the end of life as seen by a close relative

The aim of the present study was to describe variations in patient participation in decisions about care planning during the final phase of life for a group of gravely ill patients, and how the different actors' manner of acting promotes or impedes patient participation. Thirty-seven qualitative research interviews were conducted with relatives of the patients. The patients' participation in the decisions could be categorized into four variations: self-determination, co-determination, delegation and nonparticipation. The manner in which patients, relatives and caregivers acted differed in the respective variations; this seemed either to promote or to impede the patients' opportunities of participating in the decision making. The possibility for participation seems to be context dependent and affected by many factors such as the dying patient's personality, the social network, the availability of different forms of care, cultural values, and the extent to which nurses and other caregivers of the different forms of care can and want to support the wishes of the patients and relatives in the decision-making process.     

Differences between and within genders in caregiving strain: a comparison between caregivers of demented and non-caregivers of non-demented elderly people

Differences between and within genders in caregiving strain: a comparison between caregivers of demented and non-caregivers of non-demented elderly people Fifty-two caregivers for demented and 66 non-caregivers for non-demented elderly were investigated both within a gender and between genders. All participants were relatives and a burden questionnaire was used. The results showed that there was not always a difference between the caregivers for demented and the non-caregivers for non-demented elderly which may indicate that being a relative , even to a non-demented elderly, has obviously its own problems and importance. However, results showed more significant differences between female caregivers and female non-caregivers than between male caregivers and male non-caregivers, with females caring for a demented elderly suffering most strain. Their strain was exhibited by health problems, conflicts in the family, strained relations with family and others, a less positive outlook and limits in social support because of the caregiving situation. When investigating the group of male caregivers and male non-caregivers, it was found that males caring for a demented elderly person experienced a lack of positive outlook and a need for social support. The elderly person's residence in the group of caregivers for demented elderly people and in the group of non-caregivers for non-demented elderly people did not, however, appear to indicate any significant differences.     

Burden of responsibility experienced by family caregivers of elderly dementia sufferers

Eight family caregivers of elderly dementia sufferers participated in in-depth interviews regarding their experiences of giving care. They were selected according to strain, isolation, disappointment and emotional involvement, measured on a 'caregiver burden' scale. Structural analyses of the interviews identified six categories reflecting the feelings and experiences of the caregivers. The first symptom of dementia noted by caregiving husbands was a change in personality, whereas other relatives first observed impaired memory. The dementia sufferers were deemed to be helpless, vulnerable and anxious. The quality of the relationship preceding the onset of dementia had a bearing on the carer's situation. All caregivers felt a heavy burden, especially early in the dementia process. Husbands sustained the heaviest burden; they expressed anger, worry, weariness, guilt, distress and isolation. The caregivers used different problem- and emotion-focused strategies to cope with their situation. Visits to the homesof the elderly, for instance by the district nurse or home help, which should include interviews with close relatives, are recommended in order to disclose early signs of dementia and to prepare further individual support for the family caregivers and their relatives suffering from dementia.     

Caregivers of elderly people with loss of autonomy in Lebanon: what is the context of their health care?

The primary objective of this pan Lebanese study was to describe the health care context of family caregivers cohabiting with an elderly relative with loss of autonomy while the secondary objective consisted in the qualitative documentation of their positive and negative perceptions as to the role of the caregivers. The study uses a theoretical framework of stress. The results indicate that the caregivers (N = 319) take care of relatives (40% with memory troubles) having a moderate level of loss of autonomy and who present more depressive behaviors than "disturbing" behaviors. The caregivers are particularly affected by the behaviors of their relatives. They accomplish several health care tasks and very few receive formal services to support them. Their neighborhood offers them more emotional support than instrumental support. More caregivers perceive positive aspects than negative aspects in their role. Recommendations are formulated to guide the elaboration of a national policy of support to caregivers and the development of innovative community care practices.     

End-of-life decisions in the Intensive Care Unit (ICU) – Exploring the experiences of ICU nurses and doctors – A critical literature review

BackgroundEnd-of-life decision making in the Intensive Care Unit (ICU), can be emotionally challenging and multifaceted. Doctors and nurses are sometimes placed in a precarious position where they are required to make decisions for patients who may be unable to participate in the decision-making process. There is an increasing frequency of the need for such decisions to be made in ICU, with studies reporting that most ICU deaths are heralded by a decision to withdraw or withhold life-sustaining treatment.ObjectivesThe purpose of this paper is to critically review the literature related to end-of-life decision making among ICU doctors and nurses and focuses on three areas: (1) Who is involved in end-of-life decisions in the ICU?; (2) What challenges are encountered by ICU doctors and nurses when making decisions?; and (3) Are these decisions a source of moral distress for ICU doctors and nurses?Review methodThis review considered both qualitative and quantitative research conducted from January 2006 to March 2014 that report on the experiences of ICU doctors and nurses in end-of-life decision making. Studies with a focus on paediatrics, family/relatives perspectives, advance care directives and euthanasia were excluded. A total of 12 papers were identified for review.ResultsThere were differences reported in the decision making process and collaboration between doctors and nurses (which depended on physician preference or seniority of nurses), with overall accountability assigned to the physician. Role ambiguity, communication issues, indecision on futility of treatment, and the initiation of end-of-life discussions were some of the greatest challenges. The impact of these decisions included decreased job satisfaction, emotional and psychological ‘burnout’.ConclusionsFurther research is warranted to address the need for a more comprehensive, standardised approach to support clinicians (medical and nursing) in end-of-life decision making in the ICU.     

Health preferences and decision-making needs of disadvantaged women

AIM: This paper reports the results of a survey of disadvantaged women in La Pintana, a municipality of Santiago, Chile, to determine their health decision-making needs. BACKGROUND: Research is needed as there is no published community-based study focusing specifically on health decision-making needs of disadvantaged women. METHODS: From April to November 1999, we conducted a cross-sectional interview survey of women registered at primary healthcare centres in La Pintana, an impoverished municipality of Santiago, Chile. RESULTS: The survey participants were 554 adult women over 15 years of age. Seventy-five percent reported making current health-related decisions. Types of decisions were primarily about navigation: where, when and from whom to seek care. The most common role in decision-making was sharing the decision with others, specifically husbands and other family members. Fifty-four percent experienced decisional conflict or uncertainty about options. Those reporting more manifestations of decisional conflict were more likely to lack information on available options, pros and cons of the options, and chances of benefits and harms associated with the options; they were also more likely to be unclear about what was important to them, to feel pressure from others, lack skill or ability in decision-making and be older. The most common strategies used when making all types of decisions were obtaining information on options and recommendations, and getting support from others. Participants preferred to receive information about options through counselling from their physicians, rather than nurses, from printed materials and from discussion groups of people facing the same decision. CONCLUSION: The majority of disadvantaged women were actively involved in decision-making and needed decision support to navigate the healthcare system. Nurses should play a more pivotal role in providing health decision support. This study needs to be replicated in other countries and cultural contexts.     

Decision making at the end of life—cancer patients’ and their caregivers’ views on artificial nutrition and hydration

Purpose

Deciding on artificial nutrition and hydration (ANH) at the end of life (EoL) may cause concerns in patients and their family caregivers but there is scarce evidence regarding their preferences. Therefore, the aim of this study was to assess the impact of factors associated with ANH decision making.

Methods:

Prospective, Cross-sectional survey. Adult patients admitted to hospital for symptoms of advanced cancer as well as their family caregivers completed a self-administered questionnaire. Items included personal views and concerns about ANH. Family caregivers additionally recorded their preference for their loved one and, if applicable, previous experience with ANH decisions.

Results

Thirty-nine out of sixty-five patients and 30/72 relatives responded. Higher age of the patient was significantly correlated with both the patient’s and the relative’s decision to forgo ANH (Kruskal-Wallis test, p?χ ² test, p <0.001), while 23, 23 and 24 %, respectively, wished to receive ANH. Patients felt more confident about decisions on artificial nutrition (AN) than caregivers (T test, p?χ ² test, p?p?Conclusion Cancer patients and their relatives have similar preferences regarding ANH at the EoL, but relatives are reluctant to withhold AH if deciding for their loved one. While patients seem to be confident with ANH decision making, their caregivers may particularly benefit from discussing ANH options to dissipate fears.     

Caregiving demands: their difficulty and effects on the well-being of elderly caregivers.

Nurses assess situations involving elderly caregivers, yet data conflict on how caregivers perceive caregiving demands. To develop appropriate research-based interventions, more data are needed on specific aspects of these demands. Discussed are data from interviews with 60 elderly caregivers regarding tasks and personal demands. Results suggest that personal demands are perceived as more difficult than task demands and are associated to a greater extent with caregiver life satisfaction and depression. Issues are raised, however, regarding the measurement of expressed difficulty. Findings also support the adaptive capacity of these caregivers and their commitment to the caregiving role. Implications for nursing practice and nursing science are discussed.     

The impact of adult day programs on family caregivers of elderly relatives

Adult day programs for elderly people have been implemented throughout North America but not widely evaluated for their impact on family caregivers. This study examined caregiver outcomes at 14 programs in Alberta, Canada. Caregivers were measured on burden, quality of life, perceived health, opinion on institutionalization at 4 time points (just prior to client admission, 2 weeks, 2 months, and 6 months after admission), and satisfaction with the program at 3 points after client admission. Caregiver status on burden, quality of life, and perceived health status remained stable over time. In addition, caregivers' opinion on institutionalization remained negative and satisfaction with the programs high. Caregivers reported that client socializing and improved health were what they liked best about the programs, followed by respite for themselves. Time conflicts-limits and transportation were identified as problems. The results suggest that adult day programs may help caregivers to continue in their caregiving role and to keep clients in the community longer.     

How frail elders evaluate their caregiver's role enactment: a scale to measure affection, skill, and attentiveness

In this validity study, using factor analysis, the authors identified three dimensions (affection, skill, and attentiveness) of the Care Receiver View of Caregiver Role Enactment Scale, a self-report measure designed to elicit an elderly care receiver's evaluation of how well their family member carried out the role of caregiver. The scale is a revision of the Satisfaction With Caregiving Scale. This study was a secondary analysis of data from PREP: Family-based Care for Frail Older Persons. Care receiver mutuality was the variable most highly correlated with caregiver role enactment. Other variables related to good quality care were higher care receiver positive affect, better caregiver physical health, and lower caregiver role strain; husband caregivers were rated as giving poorer quality care.     

Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers

It is increasingly common that cancer patients are cared for at home at the end of life, with help from advanced home care teams. This may have positive implications for cancer patients and their families, but it may also be burdensome to the family caregivers with implications for their health and well-being. This qualitative study was therefore initiated to prospectively explore how family caregivers reason about their expectations of providing end-of-life care at home for relatives with cancer, enrolled in advanced palliative home care units. Ten interviews were conducted with 11 family caregivers at enrollment to the home care unit. A form of constant comparative analysis was used to generate two main themes from the data. One theme concerned the role transition into becoming a family caregiver, whereas the other theme relates to the transition to a new life situation of the caregiver (him/herself). The family caregivers describe themselves as the persons primarily bearing responsibility and providing care for their dying relatives. They were found to have many concerns about their own situation, especially in regard to issues temporally after the death of the patient, but seemed to have few expected sources of support related to these concerns. Professional support is described as expected primarily for care-related tasks, although hopes may be expressed about support in other areas. The distinction between resources described as existing in theory and those used in practice also are apparent in analysis of the interviews. If home care is to be a positive alternative to hospital care, individual expectations should be considered when planning supportive care.     

Client-caregiver-nurse coalition formation in decision-making situations during home visits

AIMS: The purpose of this paper is to report the findings of an exploratory study designed to test a portion of the Theory of Collaborative Decision-Making in Nursing Practice for Triads by examining the relation between types of decisions and formation of coalitions during triadic interactions among older home healthcare clients, their caregivers and home healthcare nurses during seven admission visits for home health care. BACKGROUND: Although home healthcare nurses include clients and family members in decision-making about care, few publications address the nature of interactions among triads of clients, caregivers and nurses in home health care and the association between decision-making and those interactions. METHOD: The data presented in this paper are a secondary analysis of data originally collected in 1994. The sample included 157 decision-making situations identified from interactions of seven triads of older home healthcare clients, their caregivers and nurses. Qualitative data were collected by participant observation and audio-recording of admission visit interactions among clients, caregivers and nurses. Content analysis, augmented by Ethnograph software, was used to analyse the data. FINDINGS: Coalitions were evident in just eight of the 157 decision-making situations. All of the theoretically possible types of nursing care decisions (programme, operational control, agenda) were observed. Each coalition involved one nursing care decision; two coalitions formed in one triad. Seven coalitions formed between nurse and caregiver against client during two programme and five operational control decisions. One coalition formed between client and caregiver against nurse during an agenda decision. No coalitions formed between client and nurse against caregiver. CONCLUSIONS: Although the study sample was small, the findings expand understanding of the relation between types of decisions and formation of coalitions during triadic interactions in home health care, and provided empirical support for a portion of the Theory of Collaborative Decision-Making in Nursing Practice for Triads.