RESEARCH ARTICLE Open Access Hope Against Hope: Exploring .
Williams et al. BMC Palliative Care 2013, ESEARCH ARTICLEOpen AccessHope against hope: exploring the hopes andchallenges of rural female caregivers of personswith advanced cancerAllison Williams1*, Wendy Duggleby2, Jeanette Eby1, Reverend Dan Cooper3, Lars K Hallstrom4,Lorraine Holtslander5 and Roanne Thomas6AbstractBackground: This paper focuses on the qualitative component of a study evaluating a hope intervention, entitledLiving with Hope Program (LWHP), designed to foster hope in female caregivers of family members living withadvanced cancer. The purpose of this research is to share, in the form of a story, the experiences of rural femalecaregivers caring for family members with advanced cancer, focusing on what fosters their hope. Hope is apsychosocial and spiritual resource that has been found to help family caregivers live through difficult transitionsand challenges.Methods: Twenty-three participants from rural Western Canada completed daily journal entries documenting theirhopes and challenges. Cortazzi’s (2001) method of narrative analysis was used to analyze the data, which was thentranscribed into a narrative entitled ‘hope against hope.’Results: The journal entries highlighted: the caregivers’ hopes and what fostered their hope; the various challengesof caregiving; self-care strategies, and; their emotional journey. Hope was integrated throughout their entireexperience, and ‘hope against hope’ describes how hope persists even when there is no hope for a cure.Conclusions: This research contributes to the assessment of caregiver interventions that impact hope and quality oflife, while illustrating the value of a narrative approach to both research and practice. Journaling may be particularlyvaluable for rural caregivers who are isolated, and may lack direct professional and peer support. There is anopportunity for health professionals and other providers to foster a relationship of trust with family caregivers, in whichtheir story can be told openly and where practitioners pay closer attention to the psychosocial needs of caregivers.Keywords: Hope, Palliative and end of life care, Caregiving, Rural, Narrative researchBackgroundIn palliative and end of life (P/EOL) care, much of the responsibility of caring for those who are dying rests on family caregivers, the majority of whom are women [1,2].Caregivers in P/EOL care are particularly vulnerable to declines in their own health status, as they often prioritize theneeds of the dying while neglecting their own. In a metasynthesis study of the hope experience of family caregiverswith chronic illnesses, hope was defined as a psychologicalresource that helped them deal with their caregiving* Correspondence: awill@mcmaster.ca1School of Geography and Earth Sciences, McMaster University, 1280 MainStreet West, Hamilton, ON L8S 4 K1, CanadaFull list of author information is available at the end of the articleexperience [3]. The hope of family caregivers was situational and influenced by relational and contextual factors.In a recent review of the literature on home-based familycaregivers, Funk et al. suggested there is a need for researchrelated to the relational and contextual influences on thefamily caregiver at the end of life [4]. The relational andcontextual influences on the family caregivers are important to understand the caregiving experience and hope experience. Elucidating the stories of family caregivers is oneway to capture these relational and contextual influences.When someone is nearing the end of their life, their caregiver is a witness to the person who is suffering and inpain [5]; the caregiver also experiences their own pain andsuffering and has an interconnected, but distinct, story to 2013 Williams et al.; licensee BioMed Central Ltd. This is an open access article distributed under the terms of the CreativeCommons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, andreproduction in any medium, provided the original work is properly cited.
Williams et al. BMC Palliative Care 2013, ell. The purpose of this research is to share, in the formof a story, the experiences of rural female caregivers caringfor family members with advanced cancer, focusing onwhat fosters their hope. The journals were collected aspart of a larger research study on the hope of rural womencaregivers of persons with advanced cancer.This particular research paper focuses on the qualitativecomponent of a mixed method study evaluating a hopeintervention entitled Living With Hope Program (LWHP)[6]. The mixed method design employed was a concurrentexplanatory design, with the emphasis on the quantitativedata. Qualitative data informed the quantitative findings.Short, direct entries, written in participant journals, werecollected as the qualitative component. The Living WithHope Program (LWHP) was designed to foster hope incaregivers of family members with advanced cancer; it wasdeveloped based on qualitative data [7] and from recommendations for family caregiver interventions [8]. The program was pilot tested for its feasibility, and was deemed tobe not only feasible, but also flexible, easy to use, andshowed promise in increasing the hope and quality of lifeof family caregivers [9].The intervention of the LWHP consists of an international award-winning video, Living with Hope and ahope activity, entitled Stories of the Present, where participants complete a daily journal entry for two weeks,writing down their challenges and what gives them hopeeach day. Journaling allows individuals to cognitivelyorganize stressful events, and provides a venue for reflection when daily life can be overwhelming and chaotic[10]. In the larger research study, the LWHP was givento rural female family caregivers of persons living withadvanced cancer. The purpose of the in depth narrativeanalysis of the qualitative data collected from the journaling exercise provides an understanding of the experience of the participants while contributing to thecontext in which the LWHP is evaluated. In addition, italso identifies other factors that influence hope, all ofwhich had an impact on the effectiveness of the LWHP.Rural communities have an increasingly aging population and may be particularly vulnerable in P/EOL care[11]. Research on rural palliative care highlights how ruralhealth services are fragmented, underfunded and lack specialists, and how caregivers are over-extended. Rural communities are also known for their resourcefulness andsocial cohesion, thus, there are strengths and challenges torural P/EOL care provision [12,13]. This context emphasizes the vulnerability that these caregivers are experiencing amidst a critical time in their caregiving trajectory.Experience of caregivingThe negative physical, mental, emotional, social andeconomic consequences of providing care can be summarized into the term ‘caregiver burden.’ While most familyPage 2 of 10caregivers want to be able care for their family member,they continue to experience caregiver burden and carry responsibilities beyond what they can handle physically andemotionally; this in turn negatively impacts their healthand overall quality of life [14-16]. Caregiver burden can beexacerbated by the multiple roles and responsibilities thatfamily caregivers have, including spouse, parent, and employee [17]. The common negative health outcomes thatfamily caregivers experience include stress, anxiety, depression, sleep deprivation, fatigue, physical pain and otherchronic health conditions [18-20]. Loneliness and fear canalso be a part of the family caregiver’s experience, and thefear of the unknown is felt especially as the patient nearsthe end of their life [21,22]. Hope is a psychosocial andspiritual resource that has been found to help family caregivers in managing the challenges of caregiving.Caregiving and hopeUnderstanding the meaning and significance of hope andits relationship to quality of life has been a significantfocus of research across disciplines and methodologies,specifically in literature related to health and illness. Themeaning and processes of hope have been studied across avariety of health and illness experiences, including individuals living with a terminal illness [23,24], caregivers of persons living with chronic illness [3], caregivers of personsliving with dementia [25,26], bereaved caregivers [27] andindividuals living with HIV/AIDS [28].As a psychosocial and spiritual resource, hope has beenfound to help family caregivers live through difficult transitions and challenges of the caregiving experience, and influences their quality of life [29,30]. Hope is related to howindividuals behave, feel and think; it has been defined asan inner strength, as possibility for the future, and as amultidimensional, dynamic life force, among other descriptions. In a metasynthesis of the hope experience offamily caregivers of persons with chronic illness [3], theauthors found that hope involves the interrelated, coexisting themes of: transitional refocusing from a difficultpresent to a positive future; dynamic possibilities withinuncertainty; different pathways of hope based on the degree of uncertainty, and; hope outcomes such as coping,decreasing grief and increasing well-being. This metasynthesis highlighted how hope is integrated with manyaspects of the caregivers’ experiences, including the challenges and the uncertainty of caregiving. In the metasynthesis only two studies focused on the hope experience offamily caregivers of persons with advanced cancer [7,31].Borneman et al.’s study emphasized the importance ofhope in the caregiving experience; common themes included the strong connection between hope and faith,and inter-relatedness with others [31]. Other themes included being realistically hopeful, taking things one dayat a time, and hoping to decrease the patient’s suffering.
Williams et al. BMC Palliative Care 2013, orneman et al. advocated for nurses to play a role in facilitating and maintaining hope in family caregivers.Holtsander et al.’s study of the experience of hope offamily caregivers of palliative patients introduced amodel for the hope pathway ‘Hanging onto Hope,’ whichbegan with the palliative diagnosis [7]. There were experiences that could erode the hope of the caregiver, aswell as experiences that fostered hope, such as relationships and spirituality. ‘Hanging onto Hope’ for the familycaregivers involved writing their own story, staying positive, living in the moment, and doing what you have todo by accepting and not giving up. The participants described their hope as essential as it gave them the courage to continue to give care.Not included in the metasynthesis study [3] as it waspublished later, in 2012, is an additional study of hopewhich used narrative analysis of journal entries of 10caregivers to create a poem about the hope experienceof family caregivers of someone with advanced cancer[32]. The intense chaos, filled with turbulence and uncertainty, as well as the daily search for hope, were apparent in the caregivers’ narratives. This study however,was the only published study that utilized a narrative approach to describe the experience of family caregivers ofpersons with advanced cancer; future research was recommended with larger sample size.With only three published studies of hope amongcaregivers of persons with advanced cancer, there is apaucity of research in this area. Advanced cancer is distinguished from other end of life processes by the severity of its physical and psychosocial symptoms [33,34],which has an impact on the health and well being ofcaregivers [35]. The purpose this study was to describethe experience of family caregivers of persons with advanced cancer. The specific aims were to describe theexperience of rural female caregivers caring for familymember with advanced cancer, and to describe what fosters their hope.MethodsIncreasingly, the importance of the narrative is being recognized in health care and more specifically in palliativecare [36-39]. For example, by listening to patient and caregiver stories, care professionals can better understand andmeet psychosocial and spiritual needs of those they areserving; by telling stories and having someone listen andrespond the narrator can create new ways of seeing theworld and their place in it [40]. Narrative is a term used torefer to structures of knowledge and storied ways of knowing [41]. The act of telling/writing may be therapeutic forthe person doing the telling/writing; however, the purposeof this study was not to uncover the potential therapeuticnature of narratives. Most approaches to narrative inhealth care research focus on the patient experience; inPage 3 of 10P/EOL care, the patient and family is the unit of care. Thestories of family caregivers must be engaged, as they are aconstant witness to the experience of the dying person [6],and to their own experience of, suffering.SampleParticipants were recruited through palliative home careproviders who identified potential participants based onthe inclusion criterion and asked for their consent to provide their contact information to trained experience research nurses (RAs). Inclusion criterion were: 1) 18 yearsof older, 2) self-identify as rural, 3) female, and 4) livingwith and caring for a person with advanced cancer. If thepotential participant agreed to be contacted, the RA contacted them and gave them information about the study.Rural women caregivers were the focus of this study asthey are at most risk for the negative consequences ofcaregiving [6]. The number of participants was determinedby those participants that wrote “Stories of the Present” inthe evaluation study of the LWHP.Twenty-three women living in rural Saskatchewan orAlberta participated in this study. The mea
Hope against hope: exploring the hopes and challenges of rural female caregivers of persons with advanced cancer Allison Williams1*, Wendy Duggleby2, Jeanette Eby1, Reverend Dan Cooper3, Lars K Hallstrom4, Lorraine Holtslander5 and Roanne Thomas6 Abstract Background: This paper focuses on the qualitative component of a study evaluating a hope intervention, entitled Living with Hope Program .
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children’s hope scale. scores can be added to generate a total score ranging from low of 6 to high of 36. grouping scores: low hope (6-12) slight hope (13-23) moderate hope (24-29) high hope (30-36) children’s hope scale validity and reliability a measure is only useful if it can show distinct differences between high and low levels high hope
Keywords: Open access, open educational resources, open education, open and distance learning, open access publishing and licensing, digital scholarship 1. Introducing Open Access and our investigation The movement of Open Access is attempting to reach a global audience of students and staff on campus and in open and distance learning environments.
future and we lose hope. Hope becomes a concept for other people: It s too late for me . We all need hope. That is universal. But there is an even greater universal truth: hope is possible. Hope is reality. In this Bible study we consider the life of one man who saw himself beyond hope but found the opposite to be true. TH OINT You are never .
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Article 27 Article 32 26 37 Journeyman Glazier Wages Article 32, Section A (2) 38 Jurisdiction of Work Article 32, Section L 43 Legality Article 2 3 Mechanical Equipment Article 15, Section B 16 Out-of-Area Employers Article 4, Section B 4 Out-of-Area Work Article 4, Section A 4 Overtime Article 32, Section G 41
accounting items are presumed in law to give a true and fair view. 8 There is no explicit requirement in the Companies Act 2006 or FRS 102 for companies entitled to prepare accounts in accordance with the small companies regime to report on the going concern basis of accounting and material uncertainties. However, directors of small companies are required to make such disclosures that are .
