The transition experience of rural older persons with advanced cancer and their families: a grounded theory study

BACKGROUND: Transitions often occur suddenly and can be traumatic to both patients with advanced disease and their families. The purpose of this study was to explore the transition experience of older rural persons with advanced cancer and their families from the perspective of palliative home care patients, bereaved family caregivers, and health care professionals. The specific aims were to: (1) describe the experience of significant transitions experienced by older rural persons who were receiving palliative home care and their families and (2) develop a substantive theory of transitions in this population. METHODS: Using a grounded theory approach, 27 open-ended individual audio-taped interviews were conducted with six older rural persons with advanced cancer and 10 bereaved family caregivers. Four focus group interviews were conducted with 12 palliative care health care professionals. All interviews were transcribed verbatim, coded, and analyzed using Charmaz\u27s constructivist grounded theory approach. RESULTS: Within a rural context of isolation, lack of information and limited accessibility to services, and values of individuality and community connectedness, older rural palliative patients and their families experienced multiple complex transitions in environment, roles/relationships, activities of daily living, and physical and mental health. Transitions disrupted the lives of palliative patients and their caregivers, resulting in distress and uncertainty. Rural palliative patients and their families adapted to transitions through the processes of Navigating Unknown Waters . This tentative theory includes processes of coming to terms with their situation, connecting, and redefining normal. Timely communication, provision of information and support networks facilitated the processes. CONCLUSION: The emerging theory provides a foundation for future research. Significant transitions identified in this study may serve as a focus for improving delivery of palliative and end of life care in rural areas. Improved understanding of the transitions experienced by advanced cancer palliative care patients and their families, as well as the psychological processes involved in adapting to the transitions, will help health care providers address the unique needs of this vulnerable population

A mixed methods study of hope, transitions, and quality of life in family caregivers of persons with Alzheimer's disease

<p>Abstract</p> <p>Background</p> <p>Several research studies have reported the poor quality of life of family caregivers of persons with Alzheimer's disease (AD). However, factors that influence their quality of life have not been clearly defined. The purpose of this study was to examine factors associated with the quality of life of these caregivers such as demographic variables, their transition experience, and hope. A secondary aim was to explore the transition experience of family caregivers of persons with AD.</p> <p>Methods</p> <p>A cross-sectional triangulation data transformation model mixed method design (Quant +Qual) was utilized to address the purpose of the study. Eighty family caregivers of persons with AD completed a survey with quantitative measures [demographic variables, Herth Hope Index (HHI-hope), World Health Organization Quality of Life -BREF (WHOQOL-BREF)] and a qualitative survey about their transitions experience. The qualitative data (transition open ended- survey) was converted to quantitative data using content analysis. Variables significant at the p < 0.10 level in the univariate analysis were entered in the multivariate generalized linear model used to determine significant factors associated with quality of life.</p> <p>Results</p> <p>Subjects with higher hope scores (p < 0.0001) (Factor 1: temporality and future-cognitive-temporary dimension of hope) and who dealt with their transitions by actively seeking out knowledge and assistance (p = 0.02) had higher overall quality of life scores. HHI scores were associated with overall quality of life and for each of the four quality of life domains (physical psychosocial, relationships, and environment).</p> <p>Conclusions</p> <p>Hope played a significant role in the subjects' perceptions of overall quality of life as well as the 4 quality of life domains. This underscores the need to develop ways to foster hope in family caregivers. Moreover, the active engagement of families in seeking information and help, as a way to deal with their transitions, suggests encouraging this engagement is important. The findings of this study also suggest many directions for future research, such as increasing our understanding of the processes of transitions for this population.</p

Living with hope: developing a psychosocial supportive program for rural women caregivers of persons with advanced cancer

<p>Abstract</p> <p>Background</p> <p>Hope is defined by caregivers as the inner strength to achieve future good and to continue care giving. Pilot test findings of a Living with Hope Program (LWHP) suggested it is an acceptable and feasible intervention for use by family caregivers. Although it shows promise in potentially increasing hope and quality of life, further testing and development is needed. Questions remain as to: a) what are the mechanisms through which the LWHP affects outcomes and b) how long it is effective? <it>The overall purpose of this time series mixed method study is the further development and testing of the LWHP by</it>:</p> <p indent="1">a. Determining the mechanisms of the LWHP by testing a LWHP conceptual model in which self-efficacy, and loss/grief are hypothesized intermediary variables for changes in hope, and subsequently quality of life among rural women caring for persons with advanced cancer, and;</p> <p indent="1">b. Exploring the longitudinal effects of the LWHP on hope, quality of life and health services utilization among rural women caring for persons with advanced cancer.</p> <p>Methods/Design</p> <p>Using a time-series embedded mixed method design, data will be collected from 200 rural women caregivers. Following the collection of baseline and outcome variables, the intervention (LWHP) is applied to all subjects. Subjects are followed over time with repeated measures of outcome variables (1 wk, 2 wk, 3, 6 and 12 months). The journals that are completed as part of the LWHP comprise the qualitative data. Health services utilization data will be collected from the Saskatchewan Health Administrative Database for all subjects one year prior and one year after study enrolment.</p> <p>Path analysis will be used to test the model post LWHP, at 1 and 2 weeks. Two-factor ANCOVA will determine patterns over time and Cortazzi's narrative analysis will be used to analyze subjects journals completed as part of the LWHP.</p> <p>Discussion</p> <p>Data Collection began January 2009 and is expected to be completed within 2 years time. Monthly meetings with data collectors and site collaborators have been instrumental in revisions to the original study protocol such as identifying and adding additional study sites.</p> <p>Trial Registration</p> <p>Trial Registration; Clinical Trials.Gov. NCT01081301</p

\u27I Am Part of the Community but...\u27 The Changing Context of Rural Living for Persons with Advanced Cancer and Their Families

Introduction: Older rural persons who are receiving palliative care experience multiple co-existing transitions that can be distressing. These transitions do not occur in a vacuum, but occur in a context that reflects the uniqueness of rural living and the complexities of end of life in rural settings. The context or situation (geographical, physical, and social) in which an experience occurs influences the way people view and interpret the world around them; this contextual perspective contributes greatly to perceptions held by rural residents. Purpose:The purpose of this study was to explore the context in which older rural patients receiving palliative care and their families experience transitions. Following a study of the transition experiences of older rural palliative patients, an in-depth interpretive description analysis was conducted specific to the context in which the participants transitions occurred. Methods: Twenty-seven open-ended, individual, audio-taped, qualitative interviews were conducted and 4 focus group discussions were held to gather data. Individual audio-taped interviews were conducted with six older rural persons with advanced cancer and 10 bereaved (post-death) family caregivers. Four focus groups were conducted with 12 palliative care healthcare professionals. Participants were recruited from 3 rural health regions in a western Canadian province classified as one of the most \u27rural\u27 Canadian provinces. All interviews were transcribed verbatim, coded, and analyzed using Thorne\u27s interpretive description qualitative approach. Results: From the data analysis four themes emerged: (1) community connectedness/isolation; (2) lack of accessibility to care; (3) communication and information issues; and (4) independence/dependence. Participants described feelings of being connected to the community at the same time as they also reported feeling isolated. They described their value of independence at the same time as finding themselves becoming increasingly dependent on others. At times this value of independence interfered with their seeking and accessing needed health or supportive care. They perceived their lack of access to health care resulted in little or no choice in where they die. Conclusions: These findings reveal that the rural context has a major impact on the types of community support and healthcare services needed by older persons with advanced disease and their families. With advanced disease, the participants sense of solitude became one of isolation, and with increasing dependence on others, they needed more connection and support from others. The findings reflected a more complex view of rural aging and dying than has been cited in the literature to date. This study suggests there is a need to renegotiate community supports and the independence available to persons with advanced disease as they undergo multiple transitions near the end of life

Developing Navigation Competencies to Care for Older Rural Adults with Advanced Illness

Navigators help rural older adults with advanced illness and their families connect to needed resources, information,and people to improve their quality of life. This article describes the process used to engage experts – in rural aging, ruralpalliative care, and navigation – as well as rural community stakeholders to develop a conceptual definition of navigationand delineate navigation competencies for the care of this population. A discussion paper on the important considerationsfor navigation in this population was developed followed by a four-phased Delphi process with 30 expert panel members.Study results culminated in fi ve general navigation competencies for health care providers caring for older rural personsand their families at end of life: provide patient/family screening; advocate for the patient/family; facilitate communityconnections; coordinate access to services and resources; and promote active engagement. Specific competencies werealso developed. These competencies provide the foundation for research and curriculum development in navigation

The association of perceived conflict with sadness for long-term care residents with moderate and severe dementia

Objectives: Research into the lived experiences of long-term care residents with dementia hasidentified perceived conflict, and its impact on sadness, as priorities for quality of life from theperspectives of people with dementia. However, whether and to what extent perceived conflictand sadness are associated has not been previously tested in this population. This study tested theassociations between perceived conflicts with staff, family or friends and co-residents and theirexperience of sadness, and whether cognitive impairment or functional dependence modifiedthese associations.Methods: The study design was cross-sectional, correlational retrospective. Participants were5001 residents of 613 long-term care facilities in Ontario, Canada with moderate and severedementia. Clinical administrative data collected from 2012 to 2013 using the Resident AssessmentInstrument 2.0 were used to measure the person’s perception of conflicts with family/friends,staff, or co-residents, as well as verbal and non-verbal indicators of sadness. Hypotheses weretested using logistic regression, with cluster correction.Results: Sadness (adjusting for age, sex, family/friend contact, pain, cognitive impairment, andfunctional dependence) was positively associated with perceived conflicts with family or friends(OR 1.91; 95% CI 1.26–2.88; p¼0.002) and staff (OR 1.51; 95% CI 1.07–2.13; p¼0.020). Theseassociations did not differ depending on the level of cognitive impairment or functionaldependence. The association between co-resident conflict and sadness was statisticallysignificant for people with moderate (OR 2.02; 95% CI 1.45–2.82; p<0.001) but not for thosewith severe dementia (OR 1.18; 95% CI 0.72–1.91; p¼0.511).Conclusion: Long-term care residents with dementia who perceive conflict with others requiresupport to maintain high quality relationships, particularly with family and friends. Future researchshould rigorously assess the modifiability of perceived conflict for people with moderate andsevere dementia, and whether interventions to ameliorate perceived conflict result in decreasedsadness and improved quality of life