JOURNAL OF PALLIATIVE MEDICINE Volume 7, Number 1, 2004 © Mary Ann Liebert, Inc.
Meeting the Supportive Needs of Family Caregivers in Palliative Care: Challenges for Health Professionals PETER L. HUDSON, R.N., Ph.D., SANCHIA ARANDA, R.N., Ph.D.,2 and LINDA J. KRISTJANSON, R.N., Ph.D.3
ABSTRACT Caring for a dying relative is demanding, and family caregivers have acknowledged many unmet needs associated with their caregiver role. Consistently, caregivers of dying patients with cancer have reported that they need more support and information from health care professionals. Moreover, a number of palliative care clinicians and researchers have called for interventions to enhance the support offered to family caregivers. However, before researchers can develop and test palliative care interventions directed to families, it is important to identify barriers that may confront health care professionals with regard to the provision of supportive family care. For new interventions to be feasible they must be applicable within the constraints of current palliative care service delivery environments. This paper provides an account of issues that may impinge on optimal transference of supportive strategies from health care professionals to family caregivers of patients receiving palliative care. By acknowledging these barriers to supportive care, researchers and health care professionals can begin to design and implement interventions that are clinically relevant and more likely to be effective. tinue in many instances to provide long-term, 24hour care within the home with little emotional or psychological support.4 The impact of caring for a family member in need of palliative cancer care has been well reported in the literature. 5–8 These authors assert that caregivers are often prone to negative physical, social and emotional sequelae. Moreover, research conducted for more than a decade has demonstrated that caregivers themselves report unmet needs.7,9–11 Commonly these needs encompass a desire for more information and support from health care professionals.10,12–14 As a consequence of the substantive body of literature on the impact of being a caregiver and the unmet
INTRODUCTION
I
the terms hospice and palliative care are used interchangeably to refer to the support provided to people with active, progressive and far advanced disease with little or no prospect of cure.1 Deeply rooted within the core of palliative care philosophy is support for the family as well as the patient. 2 The World Health Organization promotes the importance of families receiving input from palliative care services, identifying the patient and family as the unit of care.3 However, the needs of families may not be well served by some professional palliative care providers and family caregivers conN MANY COUNTRIES
1 School
of Nursing and Centre for Palliative Care, University of Melbourne, Victoria, Australia. Centre, Peter MacCallum Cancer Institute, Victoria, Australia. 3 School of Nursing and Public Health, Edith Cowan University, Western Australia. 2 Education
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needs of caregivers, there has been an urgent request by many authors for the development of supportive interventions to assist family caregivers.10,15–17 A recent systematic review of interventions for palliative care families identified that interventions to date are underdeveloped and researchers must consider carefully the design of interventions and their practical application in order to increase the likelihood of effectiveness.18 Family intervention research design recommendations have been made.18–22 However, prior to the development and testing of new interventions to augment the care provided to palliative care families, the common challenges that currently confront health care professionals’ capacity to provide optimal support need to be more explicit. Without this disclosure there is a danger that interventions may not be relevant within the practice setting and hence may fail to meet intended aims. A more logical approach is to implement supportive interventions developed in recognition of common practice-based barriers. The ensuing discussion provides an outline of the common challenges affecting a health care professional’s capacity to meet the supportive care needs of family members caring for a relative in need of palliative care and has relevance for inpatient, outpatient and home-based care. This analysis of challenges to the provision of family-centred care is based upon a review and synthesis of published palliative family care literature cited in the following databases: CINAHL, MEDLINE, PsychINFO and Web of Science, between the years 1990–2002. The following keywords were utilized in the search: palliative, hospice, family, cancer, and caregivers. Key palliative care texts were also reviewed. The paper also draws on experience of the authors who, collectively, have two decades of clinical and research experience with palliative care families. The supportive care challenges fall into three broad categories: family-related challenges, health system barriers, and communication process barriers. Barriers to supportive family care are now described in accordance with these categories.
that may make it difficult for health care professionals to provide family-centerd care.
FAMILY-RELATED CHALLENGES
Currently, a sophisticated model for conceptualizing the experience of family caregiving within the domain of palliative care has not been developed. Andershed and Ternestedt28 developed a
Family-related challenges refer to characteristics, qualities, or issues pertinent to the family
Family functioning Some families may have less than optimal relationships; consequently restrictions to communication within the family and with health care professionals may arise. 23 Many families are not happy, tight-knit units and the stress of caring for relatives with terminal illnesses can cause some families to “shatter” or become hostile.24 Accordingly, it may make it difficult for health care professionals to provide supportive interventions that encompass the needs of the entire family.
Incongruent patient and caregiver needs Patient need for more information or support may not be congruent with caregiver need.9,25 In one study caregivers were much more likely than the patient to want the doctor and the nurse to visit more often to make sure that everything was all right.9 Perhaps caregivers may refrain from seeking out or accepting additional support for fear of causing conflict between themselves and the patient. Indeed, access to visiting health care professionals may be blocked by patients. 26 One caregiver in Smith’s study26 reported: You see if I try to speak to (hospice nurse) then my Mum feels that I’m talking behind her back. I mean I’ve only got to see (hospice nurse) out the door and if I’m not straight back she’ll say what are you talking about? Are you talking about me? (p. 95). Furthermore caregivers may not want to put their needs before those of the patient or may believe that their concerns are inevitable and cannot be met.6 Given the fact that the patient and family may have very different needs this makes it difficult for health care professionals to determine whose needs take priority.27
Underdeveloped frameworks for conceptualizing family caregiving in palliative care
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theoretical framework related to relatives’ involvement in the care of the dying, but acknowledge that it should not be viewed as an explanatory model. Nolan et al.29 developed a typology of family caregiving, but concede its limited external validity. The transactional stress and coping framework proposed in the seminal work of Lazarus and Folkman 30 has been widely used and advocated in family caregiver research,16,31–39 and has recently been promoted as a suitable model for conceptualizing and planning interventions for palliative family caregivers. 40 An advantage of the Lazarus and Folkman approach is that it acknowledges that the family caregiver experience may in fact be rewarding, and is therefore not inherently harmful. The idea of meaning in experience has been expanded by more recent work by Folkman.41 Moreover, this transactional model recognizes that it is the family member’s unique response to caregiving, including the family dynamics that impacts on the family member’s psychological reaction and not the caregiving event itself. Until researchers and health care professionals develop and validate a model for family caregiving that is directly applicable to understanding the family caregiver experience, there will continue to be difficulties for practitioners in applying a suitable framework for guiding their care decisions.
Conspiracies of silence
Communication process barriers
Preparing family caregivers to care for a dying person should begin in the hospital.47 This may be idealistic, however, because staff in the hospital may not see this a priority and/or may not have the required knowledge to provide supportive information strategies. Short hospital admissions may also restrict the time available to implement supportive strategies for caregivers. Furthermore, it may be difficult for clinicians to be sure of the appropriate time to provide supportive information.25 Much of the content pertaining to informing caregivers with regard to their role is quite emotive because these discussions concern issues of death and dying. Health professionals may not want to give too much information too soon, fearful that they may cause more harm than good.
Communication process barriers refer to problems that occur during the course of attempting to provide family-centered care, which prevent or inhibit health care professionals from providing information, practical advice, and support to families.
Impaired concentration Caregivers’ ability to absorb and retain information may be compromised by memory loss, depression, fear, anxiety, and sleep deprivation.42–44 Therefore, clinicians need to attempt to promote an environment that is conducive to information exchange when providing supportive care strategies. Ideally, there should be privacy and minimal interruptions to allow for optimal communication; this is not always easy in hospitals and homes. Furthermore, health care professionals need to ensure that caregivers have heard and understood the content of the information and be provided with sufficient time to have questions clarified.
When caregivers are confronted with new practical, emotional, and existential issues many avoid talking about them.8,45 Andershed and Ternestedt8 report the phenomenon of “mutual pretence” where people refrain from talking about the inevitable. Rhodes46 proposes that there may be degrees of knowing about prognosis and there may be complex strategies of collusion, deception and avoidance between patients and family caregivers. It may therefore be difficult to assess the need for and develop supportive strategies if caregivers and patients are restricting what they disclose. Perhaps this conspiracy of silence is not restricted to family caregivers and patients but exists for health care professionals also.46 Clinicians may at times feel uncomfortable with or avoid dealing with issues related to death and dying.16 This may occur because of health care professionals own lack of preparedness to help others deal with this issue or alternatively they may be reluctant to break the conspiracy of silence occurring between caregiver and patient. The outcome is that supportive information strategies may not be provided for fear of imposing information on caregivers, which they may not be ready to receive.
Timing and amount of information
Caregivers not wanting to bother health care professionals Family caregivers may not want to seek or access more information and support pertinent to
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their role because they believe that health care professionals operate in a system where resources are limited and health professional’s time is constrained.9,47–49 Furthermore, caregivers often perceive their role as more tangential; hence, they may not feel that their needs for support and information are important.43,50,51 This reticence has been described by caregivers who have acknowledged to interviewers that they were reluctant to mention their own problems as their issues were not ‘bad enough’ to bother the health care professionals.51
Caregiver’s rejection of support Health care professionals may find it frustrating when information and support is rejected by caregivers. The caregiver may perceive that the advice given is perhaps not appropriate for their relative and choose to ignore it. Health care professionals need to be aware that this may not be a matter of disrespect for the clinician’s advice, but may reflect a concern for the patient’s needs. Yates 17 provides a comprehensive rationale for this scenario, suggesting that caregivers’ knowledge base is embedded in daily experiences of persons and localities, whereas health care professionals tend to respond to clinical situations according to scientific principles. Health care professionals are commonly obliged to evaluate complex situations during brief encounters. Caregivers, on the other hand, may base their patient assessments on more comprehensive and intimate cues. This in turn assists caregivers in deciding which plans of care may be appropriate or to reject those not in keeping with their daily experience or world view.
HEALTH SYSTEM BARRIERS Health system barriers refer to qualities or characteristics of the health care system within which palliative care is delivered that make it difficult to provide family-centered care.
resources are stretched enough in caring for patients and considering their interests.52 For the family to truly be treated as the unit of care, additional family oriented strategies and resources are required. Currently it is difficult, within existing care models, for health care professionals to be expected to meet the needs of both patients and families. 27 A second resource issue concerns informational resources for family caregivers. Caregivers should be offered a variety of supportive informational tools in the form of written materials and videotapes and audiotapes. To date, few such family-specific resources are available. Moreover, the provisions of written aides to caregivers by contemporary palliative care professionals is apparently sporadic and the effectiveness of these interventions unmeasured. Often educational materials are written for patients. Family caregivers need their own educational materials that incorporate problem solving strategies, how to care for their relatives, how to maintain their own health and how to deal with bereavement. 53 Payne et al.54 conducted a national survey in the United Kingdom in an effort to evaluate the quality and type of written information provided to patients and families by palliative care units. The study identified that more than 1000 different leaflets were being used. Most leaflets dealt with general hospice information (97%), and 89% of leaflets were produced internally. It was estimated that only 40% of the British population could understand the content. These authors concluded that many patients and families may be unable to gather appropriate written information about palliative care. A suitable range of evidence-based videotapes or audio tapes aimed specifically at guiding caregivers of patients who are confronted with lifethreatening cancer does not exist. This death of quality and quantity of supportive information aides leaves health care professionals with little to offer caregivers beyond the spoken word.
Continuity of care Insufficient resources Resources may be so limited that providing comprehensive support to family caregivers may not be feasible, prompting tension between palliative care philosophy and reality. Including the care of relatives within the intrinsic aim of palliative care has been considered to be unrealistic;
Home-based palliative care may come in a variety of shapes and forms. For some palliative care patients and their families, the provision of care may be provided by one service, which employs representatives from an interdisciplinary palliative care team. For others, one service provider may manage the overall care with another
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contributing to the hands on day-to-day care. Furthermore, one palliative care service may be responsible for care during the day, while another provides after-hour resources. Not surprisingly therefore, some caregivers may feel as though continuity of care is suboptimal. 55 Even in the first scenario where the care is conducted by one palliative care service provider, there may be a variety of health care professionals who enter the home. This multiplicity of health care providers potentially hinders the development of trusting relationships between caregiver and professional.7 While health care recipients value continuity of care and relationships promoting trust and confidence, unfortunately continuity is a benefit that few receive. 25 In fact, a caregiver in one study56 requested discontinuation of the palliative care service because of his frustration with the number of different care providers giving input. This lack of continuity restricts the capacity for supportive care to be provided resulting in substandard care to both patients and family caregivers. 46
Health professional skills lacking Perhaps health care professionals, by virtue of their training, lack the appropriate skills to confidently assess and evaluate caregiver support needs. Clinicians hopefully receive instruction on the importance of patient education during their training, but the importance of caregiver learning needs has received minimal attention.57 Moreover, some staff may lack appropriate skills to deal with death and dying issues.23 Working with family caregivers is a new and difficult role for health care professionals and there is a limited tradition of practice in this area. 31
Appropriate planning and evaluation Although the family as the unit of care philosophy associated with palliative care is admirable, the capacity for clinicians to plan and deliver supportive care to relatives may be unrealistic. 27 Inadequate communication from health care professionals can result in conflicting information given to families and patients potentially adding to the stress of the situation.25,58 Palliative care services were established in direct opposition to a fragmented, financially driven, health care environment and aimed instead to refocus on the patient’s and families needs. Unfortunately the effectiveness of current
palliative care service delivery is questionable. Lecouturier et al.59 argue that collective research has revealed that despite marked improvements in knowledge and expertise and the rapid expansion of specialist palliative care services, deficiencies persist in the care provided for people dying of cancer and their families. These authors report that problems include: infrequent visits to patients and families by health care professionals, inadequate control of distressing symptoms, inferior communication, poor provision of standard resources such as nursing care and equipment, and lack of emotional support for the family. The actual planning of caregiver interventions may be less than optimal and families may choose to ignore supportive services if they have limited confidence that what is offered will meet their needs.25
CONCLUSION The rationale for supporting family caregivers is founded on palliative care principles, research that has identified the complexities of supporting a dying relative and studies that have revealed that caregivers have consistently acknowledged unmet needs. There has been an urgent request for new supportive caregiver interventions to be developed. We have argued that an expose of the barriers to optimal support for palliative family caregivers can support current practice and the development of new interventions. It can be concluded from this review that family caregivers, by virtue of their circumstance may not always be in an optimal position to receive, filter, and act on supportive information provided by palliative health care professionals. Patients and caregivers may choose not to discuss the implications of a palliative diagnosis, making it difficult for clinicians to assess needs. The needs of patients and caregivers may not always be congruent and family dynamics may make it difficult for professionals to provide optimal support. Also, caregivers may elect not to disclose their needs because they perceive them as invalid and may not wish to bother “busy” health care professionals. Furthermore, health care professionals may have difficulty in providing information because of the emotive nature of some of the content and the fact that a conducive learning environment may not always be feasible. Moreover, health care
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professionals may lack the relevant training in supporting and educating caregivers. It has been suggested that contemporary practice does not always involve comprehensive communication of caregiver information planning and evaluation. Resources that focus on supportive information for caregivers appear to be less than adequate. In addition, approaches to providing supportive services need to be enhanced. These challenges impact on a health care professional’s capacity to provide comprehensive supportive care for family caregivers. This overview should assist those who intend to develop new interventions by providing a candid base from which to structure strategies. Awareness of the obstacles portrayed allows for an intervention development process that is cognizant of “coal face” issues that hinder the transference of comprehensive supportive approaches to family caregivers.
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