Using focus groups to explore caregiver transitions and needs after placement of family members living with dementia in 24-hour care homes.

Objectives: Family caregivers (defined broadly as family and friends) of persons with dementia are challenged to cope with myriad stressors and changes that occur along the dementia trajectory. The purpose of this study was to explore the transitions experienced by caregivers of persons with dementia after their relative relocated to a 24-hour care home.Method: Qualitative thematic and conversational analysis were used: themes were co-created and modes of speech and syntactical patterns analysed to expose discourses related to caregiving after placement in 24-hour care homes.Results: Four main themes were co-constructed from the data analysis: living with loss, relinquishing, redefining the caregiving role, and rediscovering and recreating a new self.Discussion: Caregiving continues after placement of family members with dementia in 24-hour care homes. Caregivers are at-risk group and require ongoing support throughout the caregiving journey. Study participants reported that navigation skills such as relationship building, communication, and advocacy were particularly salient to the post-placement period, when navigating the complex health care environment was a significant obstacle. Ultimately, findings from these focus groups will be used to inform an online intervention to support caregivers of a family member with dementia residing in a 24-hour care home.

Hope of rural women caregivers of persons with advanced cancer: guilt, self-efficacy and mental health.

INTRODUCTION: Caring for a person with advanced disease can have a detrimental impact on the quality of life of family caregivers. This is further compounded in rural areas that have few or no palliative care services. Hope has a positive influence on the quality of life of family caregivers of persons with advanced cancer but factors influencing hope specifically in rural women caregivers of persons with advanced cancer have not been examined. PURPOSE: The purpose of this study was to determine factors influencing the hope of rural women caring for persons with advanced cancer, by examining the relationship of hope with demographic variables, self-efficacy, guilt, and caregiver physical and mental health. METHODS: A cross-sectional prospective correlational design was used. Inclusion criteria for the study were: (a) female, (b) 18 years of age or older, (c) caring for a person diagnosed with advanced cancer, (d) home address with a rural postal code, and (e) English-speaking. Using a modified Dillman technique, surveys and an invitation to participate were mailed to 780 persons with advanced cancer living in rural areas using two western Canadian provincial cancer registries. A reminder card was sent 4 weeks later. The persons with advanced cancer were asked to give the survey to their primary caregiver to complete. Surveys included measures of hope (Herth Hope Index (HHI)), general self-efficacy (General Self-Efficacy Scale (GSES)), grief (Non Death Version Revised Grief Experience Inventory (NDRGEI)), mental and physical health (Short Form Health Survey Version 2 (SF-12v2)), and demographic data such as their relationship to the person for whom the caregiver was caring. Data were entered into the Statistical Package for the Social Sciences v19 (SPSS) and analyzed using generalized linear modeling. RESULTS: Significant factors (p ≤ 0.05) influencing HHI scores were GSES ( p ≤ 0.0001), NDRGEI subscale (p=0.001), and SF-12v2 mental health summary scores (p=0.002). Participants with higher GSES, lower NDRGEI, and higher SF-12v2 mental health summary scores had higher HHI scores. The SF-12v2 physical health summary mean score of 43.30 (standard deviation (SD)=4.63) was below the 25th percentile (46.53) of US population norms. The SF-12v2 mental health summary mean score of 45.24 (SD=5.98) was just above the 25th percentile of US population norms (45.13). CONCLUSION: Participants with higher hope scores had higher mental health scores, lower perceptions of loss and grief scores, and higher scores in their confidence in their ability to deal with difficult situations (self-efficacy). The significant relationships found between hope and mental health, general self-efficacy, and perceptions of guilt provide a foundation for future research and underscore the importance of hope to rural women caregivers. The low physical and mental health scores of rural women caregivers are of concern and highlight the need to support this population.

'I am part of the community but...' 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 'rural' Canadian provinces. All interviews were transcribed verbatim, coded, and analyzed using Thorne's 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.

Enduring suffering: a grounded theory analysis of the pain experience of elderly hospice patients with cancer.

PURPOSE/OBJECTIVES: To identify, describe, and generate a theoretical analysis of the pain experience of elderly hospice patients with cancer. DESIGN: Qualitative, grounded theory. SETTING: Participants' homes in rural east Texas counties. SAMPLE: 11 participants older than 65 years who were receiving services from a for-profit hospice. METHODS: Broad, unstructured, face-to-face audiotaped interviews transcribed verbatim and analyzed using constant-comparative method of analysis. MAIN RESEARCH VARIABLES: Participants' descriptions of their pain experience. FINDINGS: Suffering is the basic social problem of pain. Participants deal with suffering through the basic social process of enduring. Enduring has two subprocesses: maintaining hope and adjusting. Trusting in a higher being and finding meaning are ways of maintaining hope. Dealing with uncertainty, accepting, and minimizing pain are ways of adjusting. CONCLUSIONS: Findings provide the basis for assessment of and interventions to foster enduring. Faith, caring relationships, and strategies to decrease pain helped elderly hospice patients to endure. IMPLICATIONS FOR NURSING PRACTICE: Nurses need to recognize and value the hard work of enduring to deal with suffering. Enduring may be fostered by assisting elderly hospice patients with cancer to maintain hope and adjust.

Elderly hospice cancer patients' descriptions of their pain experiences.

A qualitative research design was used to identify and describe the pain experience of elderly hospice patients with cancer. Eleven participants over the age of 65 receiving hospice services from a for-profit hospice in east Texas were interviewed in their homes. On the basis of a constant-comparative method of analysis, participants identified: (a) multiple sites of pain; (b) hierarchy of pain; and (c) strategies used to decrease pain. Participants differentiated "physical" and "psychological" pain, based on the source of pain. Pain was described as a hierarchy of chronic, acute, and psychological pain, with psychological being the worst. Pharmacological and nonpharmacological strategies were used to decrease their "physical" pain, but participants perceived that there was little they could do about their "psychological" pain.

Improving undergraduate nursing research education: the effectiveness of collecting and analyzing oral histories.

Nine oral histories of retired RNs (age range from 60 to 77) were collected by trained senior nursing students in their nursing research class. Attitudes toward nursing research of the 18 undergraduate baccalaureate nursing students participating in the collection and analysis of oral histories were compared with 20 students who did not participate. Both groups of students completed a pretest and posttest Attitudes Toward Nursing Research Questionnaire. The participating students had significantly positive changes in their attitudes toward nursing research. The nonparticipating group did not. While reminiscing about their careers, the retired RNs related historical events that influenced their nursing practice. Three themes emerged: World War II, technology, and intensive care units. Through an open-ended, written questionnaire following the interview, the nurses expressed positive benefits of participation. The collection and analysis of oral histories was an effective experiential learning strategy with positive outcomes for the students and the retired nurses who were interviewed.

Implementation and evaluation of a quality improvement process to improve pain management in a hospice setting.

The purpose of this article is to describe the implementation and evaluation of a quality improvement process to improve pain management in a hospice setting. A retrospective chart audit of 702 patient visits pre- and 536 patient visits post-implementation of quality improvement strategies measured five aspects of pain management: complaints of pain, severity of pain, changes in patient's pain medication regime required, patient and family teaching, and use of complementary therapies. Of these measures a significant change was found in the documentation of pain assessment, recognition of changes required in the medication regime, and patient and family teaching.

Cognitive status and postoperative pain: older adults.

The purpose of this study was to assess older adults to determine (a) the course of postoperative pain, (b) influences of pain and analgesics on mental status, and (c) relationships among age, mental status and pain. Sixty adults, aged 50-80 yr, who had total hip replacement surgery were included in this study. All subjects had met a preoperative criterion for mental status. Data collection took place over 5 days following surgery. Pain intensity and distress were assessed three times a day for 5 days. Recalled night pain intensity, pain distress, and sleep disturbance from pain were assessed daily in the early morning prior to assessment of mental status. Although no within day or day-to-day pain patterns were observed, the greatest decreases in pain occurred during the first 2 days. Night pain also improved after the third day. One-third of subjects recorded one or more episodes where mental status declined below criterion after surgery. Multivariate analysis indicated that pain, not analgesic intake, predicted mental status decline. Age was not related to pain or mental status. In general, pain was poorly managed in this group of subjects. The results suggest an explanation for acute confusion in older patients after surgery and recommend improved pain management.

Patient-controlled analgesia for older adults.

Use of patient-controlled analgesia (PCA) was compared with nurse-administered intermittent intramuscular (IM) injections of morphine in older adults during their postoperative recovery. Data analyses indicated that the PCA and IM groups did not differ in pain intensity, pain distress, and satisfaction. The PCA group had significantly less sleep disturbance from pain than the IM group. Neither group was considered to have acceptable pain management.