Family Caregiver Challenges in Pain Management for Patients with Advanced Illnesses: A Systematic Review.

Although pain management is integral to the caregiving role, there is a paucity of evidence synthesizing specific challenges family caregivers (FCs) face when managing pain for their care partners. This review comprehensively identified and summarized such challenges in the setting of advanced illnesses. Electronic databases (PubMed, CINAHL, PsycINFO, Scopus, and Health and Psychosocial Instruments) were searched using index and keyword methods for all articles published before April 2021. Fifty-five studies were included in this review. Most articles were published within the last 10 years (54%) in community settings, with home hospice care comprising the majority (50%). Most studies included patients with an advanced cancer diagnosis (84%), and 16% of the studies included patients with a noncancer diagnosis. Four major categories of challenges were identified: (1) caregiver-related issues (e.g., fears, beliefs, function), (2) caregivers' limited knowledge and skills in pain management (e.g., verbal and nonverbal pain assessment skills, pharmacological knowledge, documentation, safe management of medication), (3) communication challenges with health care providers, and (4) patient-related issues (e.g., inability to report pain). Many of these challenges have not been fully addressed in prior literature. Thus, this review provides a framework for needed future research to develop interventions that target FCs' specific challenges in providing pain management. The results also highlight a significant lack of research surrounding challenges faced by caregivers of care partners having a noncancer, dementia, or multimorbidity diagnosis.

Item Response Theory Analysis: PROMIS® Anxiety Form and Generalized Anxiety Disorder Scale.

Little research has compared item functioning of the Patient-Reported Outcomes Measurement Information System (PROMIS®) anxiety short form 6a and the generalized anxiety disorder 7-item scale using item response theory models. This was a secondary analysis of self-reported assessments from 67 at-risk U.S. military veterans. The two measures performed comparably well with data fitting adequately to models, acceptable item discriminations, and item and test information curves being unimodal and symmetric. The PROMIS® anxiety short form 6a performed better in that item difficulty estimates had a wider range and distributed more evenly and all response categories had less floor effect, while the third category in most items of the generalized anxiety disorder 7-item scale were rarely used. While both measures may be appropriate, findings provided preliminary information supporting use of the PROMIS® anxiety short form 6a as potentially preferable, especially for veterans with low-to-moderate anxiety. Further testing is needed in larger, more diverse samples.

Old Order Amish Family Management of Children With Genetic Conditions.

Families who raise children with genetic conditions manage health care within the context of cultural communities. For Amish families, although genetic conditions are prevalent and have been well reported, few studies document family management of these conditions. This article describes Amish family management strategies in light of the Family Management Framework's contextual factors. Ethnographic data captured variations in perspectives from Amish families with children with diverse genetic conditions, Amish community members, and health care providers. Findings describe families at the center of decision making and health care management for children with genetic conditions, utilizing health care professionals and their surrounding Amish community members as resources. Amish families' management strategies lie across a spectrum from home-oriented to medical-oriented, and this spectrum is elaborated in the findings and discussion of this article.

Black American older adults' motivation to engage in osteoarthritis treatment recommendations for pain self-management: A mixed methods study.

BACKGROUND: Osteoarthritis is a long-term condition, and four core treatments are recommended to minimize the interference of pain and symptoms on their daily function. However, older Black Americans have traditionally been at a disadvantage in regard to knowledge of and engagement in chronic disease self-management and self-care. Surprisingly, minimal research has addressed understanding motivational factors key to self-management behaviors. Thus, it is important to understand if older Black Americans' self-management is supported by current recommendations for the management of symptomatic osteoarthritis and what factors limit or motivate engagement in recommended treatments. OBJECTIVE: Our objectives are to: (1) identify stage of engagement in four core recommended treatments for osteoarthritis, (2) describe the barriers and motivators to these recommended treatments, and (3) construct an understanding of the process of pain self-management motivation. DESIGN: A mixed-methods concurrent parallel design. SETTING: Participants were recruited from communities in northern Louisiana, USA. PARTICIPANTS: Black Americans (≥50 years of age) with clinical osteoarthritis and/or provider-diagnosed osteoarthritis were enrolled. One hundred ten participants completed the study, and 18 of these individuals were also interviewed individually. METHODS: Data were collected using in-person surveys and interviews. Over a period of 11 months, close- and open-ended surveys and in-depth interviews were conducted with participants. Descriptive statistics describe utilization/engagement level as well as barriers and motivators of recommended treatments for non-surgical osteoarthritis. Content and thematic analyses of interviews summarized perspectives on the process and role of motivation in pain self-management. RESULTS: Overall, engagement levels in treatments ranged from very low to high. Over 55% of older Black Americans were actively engaged in two of the recommended treatments: land-based exercise and strength training. Major motivators included reduction in pain and stiffness and maintenance of mobility and good health. The majority of participants were not using water-based exercise and self-management education. Primary barriers were lack of access, time, and knowledge of resources. CONCLUSIONS: In order to maximize the benefits of osteoarthritis pain self-management, older Black Americans must be equipped with the motivation, resources, information and skills, and time to engage in recommended treatment options. Their repertoire of behavioral self-management did not include two key treatments and is inconsistent with what is recommended, predominantly due to barriers that are difficult to overcome. In these cases, motivation alone is not optimal in promoting self-management. Providers, researchers, and community advocates should work collaboratively to expand access to self-management resources, particularly when personal and community motivation are high.

An integrated model of multimorbidity and symptom science.

BACKGROUND: Prevalence and complexity of persons with multiple chronic conditions (MCC), also known as multimorbidity, are shifting clinical practice from a single disease focus to one considering MCC and symptoms. Although symptoms are intricately bound to concepts inherent in MCC science, symptoms are largely ignored in multimorbidity research and literature. PURPOSE: Introduce an Integrated Model of Multimorbidity and Symptom Science. METHODS: Critical integrative review and synthesis process. FINDINGS: The model comprises three primary domains: 1. Contributing/ Risk Factors; 2. Symptom/Disease/Treatment Interactions; and 3. Patient Outcomes. DISCUSSION: The model highlights the multilevel nature of contributing factors and the recursive interactions among multiple etiologies, conditions, symptoms, therapies, and outcomes.

"Bearing the Pain": The Experience of Aging African Americans With Osteoarthritis Pain.

Studies document that osteoarthritis-related joint pain is more severe in African American older adults, but research on the personal experience of osteoarthritis pain self-management in this population is limited. Using a qualitative descriptive design, our objective was to extend our understanding of the experience of life with osteoarthritis pain. Eighteen African Americans (50 years and older) were recruited from Louisiana to participate in a single semi-structured, in-depth interview. A conventional content analysis revealed that "Bearing the pain" characterized how older African Americans dealt with osteoarthritis. Bearing the pain comprised three actions: adjusting to pain, sharing pain with others, and trusting God as healer. We discovered that a metapersonal experience subsumes the complex biopsychosocial-cultural patterns and the intricate interaction of self, others, and God in living with and managing osteoarthritis pain. Study findings have implications for application of more inclusive self-management frameworks and interventions.

Facilitators and barriers to optimizing eating performance among cognitively impaired older adults: A qualitative study of nursing assistants' perspectives.

BACKGROUND AND OBJECTIVES: Cognitively impaired individuals are at increased risk for functional and behavioral difficulties at mealtimes, leading to compromised eating performance, low food and fluid intake, and negative functional and nutritional outcomes. Nursing assistants are the most critical front-line care staff and best positioned to manage the personal and environmental factors that influence resident eating performance. Identifying nursing assistants' perceptions of barriers and facilitators to engaging residents in eating will provide important experientially based foundation for developing and testing evidence-driven interventions to promote mealtime care. METHODS: A qualitative descriptive study was conducted in three sites: two nursing homes and one hospital gero-psychiatric inpatient unit. Six focus groups were conducted with a purposive sample of 23 nursing assistants who regularly provided mealtime care to residents with cognitive impairment. Interview questions addressed barriers and facilitators at resident, caregiver, environmental (facility), and policy levels in optimizing mealtime care. Audio recordings of focus groups were transcribed and analyzed using qualitative descriptive content analysis. Both barriers and facilitators were organized into a hierarchical taxonomy based on similarities and differences framed by the Social Ecological Model. RESULTS: The majority of barriers and facilitators were at the caregiver level. Caregiver-level barriers included lack of preparation and training, competing work demands, time pressure, and frustration. Caregiver-level facilitators included caregiver preparation and motivational, technical, informational, and instrumental assistance. Environmental-level barriers and facilitators related to the physical, social, and cultural environment and facility practices. Only barriers to optimizing mealtime care were identified at resident and policy levels. CONCLUSIONS: Nursing assistants identified multilevel barriers as well as a wide range of caregiver and environmental facilitators to optimizing dementia mealtime care. Findings can inform the development and implementation of multifaceted innovative mealtime assistance and staff training programs to promote resident eating performance while fostering person-centered individualized mealtime care practice.

Patient-Reported Outcomes Measurement Information System (PROMIS) Instruments: Reliability and Validity in Veterans Following Orthopedic Surgery.

The patient-reported outcomes measurement information system (PROMIS) offers standardized assessment measures of clinically relevant patient-reported outcomes. This study evaluated the reliability and validity of select PROMIS measures with U.S. military veterans following orthopedic surgery. Data for the current study were collected as part of a pilot randomized control trial assessing the efficacy of a 1-day Acceptance and Commitment Therapy workshop on persistent postsurgical pain in at-risk veterans undergoing orthopedic surgery. Sixty-seven participants completed surveys 3 months after surgery. Participants completed the following PROMIS instruments: PROMIS Anxiety Short Form 8a, PROMIS Depression Short Form 8b, and PROMIS Pain Interference Short Form 8a. PROMIS measures were compared to the Generalized Anxiety Disorder 7-Item Scale, the Patient Health Questionnaire 9-Item Scale, and the Brief Pain Inventory Pain Interference subscale, respectively. All three PROMIS measures demonstrated excellent internal consistency (Cronbach's αs ranged from .93 to .96) and each loaded onto a single factor. The PROMIS measures were moderately correlated with their respective comparison measures (r = .69 to .76). The PROMIS anxiety and PROMIS depression measures were highly correlated to one another (r = .91). Findings highlight the potential utility of these PROMIS measures in veterans following orthopedic surgery and the overlap between the PROMIS depression and anxiety measures in this sample.

Social resource assessment: Application of a novel communication tool during hospital discharge.

OBJECTIVE: To evaluate an interactive tool designed to help patients communicate their social resources supportive of home recovery to health care providers. METHODS: Seventy medical and surgical inpatients completed the D-CEGRM social resource interview, demographic queries, and discharge readiness surveys (RHDS) at discharge. Two weeks later, patients completed post-discharge coping difficulty surveys (PDCDS). Nurses unassociated with patients' clinical care reviewed structured clinical notes created from the D-CEGRM and categorized patients as likely to have "inadequate" or "adequate" supportive resources for home self-management. Nurse decision making was tracked using an adjudication process, and post-hoc comparisons in patient characteristics, RHDS, and PDCDS were conducted. RESULTS: Nurses categorized 36 patients (51%) as having inadequate resources. Number and accessibility of supports, presence of negative relationships, and previous struggles meeting health-related needs were important decision-making factors. Post-hoc comparisons revealed significant differences in demographic risk factors and discharge readiness ratings for those with inadequate vs. adequate resources. CONCLUSION: The D-CEGRM may be an efficient tool for patients to communicate access to social resources, and an effective facilitator of transitional care planning. PRACTICE IMPLICATIONS: The D-CEGRM may provide a useful assessment of patients' home context and guide for transitional care planning.

Patterns and Perceptions of Self-Management for Osteoarthritis Pain in African American Older Adults.

OBJECTIVE: To explore and describe older African Americans' patterns and perceptions of managing chronic osteoarthritis pain. METHODS: A convergent parallel mixed-methods design incorporating cross-sectional surveys and individual, semistructured interviews. SETTING: One hundred ten African Americans (≥50 years of age) with clinical osteoarthritis (OA) or provider-diagnosed OA from communities in northern Louisiana were enrolled. RESULTS: Although frequency varied depending on the severity of pain, older African Americans actively used an average of seven to eight self-management strategies over the course of a month to control pain. The average number of self-management strategies between high and low education and literacy groups was not statistically different, but higher-educated adults used approximately one additional strategy than those with high school or less. To achieve pain relief, African Americans relied on 10 self-management strategies that were inexpensive, easy to use and access, and generally perceived as helpful: over-the-counter (OTC) topicals, thermal modalities, land-based exercise, spiritual activities, OTC and prescribed analgesics, orthotic and assistive devices, joint injections, rest, and massage and vitamins. CONCLUSIONS: This is one of the first studies to quantitatively and qualitatively investigate the self-management of chronic OA pain in an older African American population that happened to be a predominantly higher-educated and health-literate sample. Findings indicate that Southern-dwelling African Americans are highly engaged in a range of different self-management strategies, many of which are self-initiated. Although still an important component of chronic pain self-management, spirituality was used by less than half of African Americans, but use of oral nonsteroidal anti-inflammatory drugs and opioids was relatively high.

Acceptance and Commitment Therapy for Prevention of Chronic Postsurgical Pain and Opioid Use in At-Risk Veterans: A Pilot Randomized Controlled Study.

High levels of pain, significant anxiety, or depressive symptoms before surgery put patients at elevated risk for chronic pain and prolonged opioid use following surgery. The purpose of this preliminary study was to assess the efficacy of a 1-day Acceptance and Commitment Therapy (ACT) workshop in "at-risk" veterans for the prevention of chronic pain and opioid use following orthopedic surgery. In a randomized controlled trial, 88 at-risk veterans undergoing orthopedic surgery were assigned to treatment as usual (TAU; n = 44) or TAU plus a 1-day ACT workshop (n = 44). Pain levels and opioid use were assessed up to 3 months following surgery. Pain acceptance and values-based behavior were assessed at baseline and 3-month follow-up. Participants who completed the ACT workshop reached pain and opioid cessation sooner than those in TAU. Postoperative complications exhibited a moderating effect on these outcomes, such that the effects of ACT were greater in patients without complications. Increases in pain acceptance and values-based behavior, processes targeted in ACT, were related to better outcomes. These promising results merit further investigation in a larger clinical trial. Providing an intervention before surgery for at-risk veterans has the potential to change clinical practice from a focus on management of postoperative pain to prevention of chronic pain in at-risk individuals. PERSPECTIVE: This pilot study compared the effects of a 1-day preventive behavioral intervention (ACT) to TAU in at-risk veterans undergoing orthopedic surgery. Three months following the intervention, veterans receiving ACT exhibited quicker cessation of pain and opioid use. Focusing on preoperative pain management may help prevent chronic postsurgical pain.

Factors Influencing Diabetes Self-Management Among Medically Underserved Patients With Type II Diabetes.

In this study, researchers compare and contrast issues regarding diabetes self-management between persons in good versus poor glycemic control. The sample comprises low-income racially diverse adults with diabetes from four mid-western community health centers; 44 patients participated in eight focus groups divided by control status (HbA1c of > 9 [uncontrolled] or < 7 [controlled]). Themes common to both groups included the impact of dietary restrictions on social interactions, food cravings, the impact of mental health on self-management, and the importance of formal and informal (friends and family) support. Those in the uncontrolled groups described fear about being able to control their diabetes, confusion about self-management, and difficulty managing their diabetes while caring for family members. Although those in the controlled groups acknowledged difficulties, they discussed resisting cravings, making improvements with small changes, positive feelings about their ability to control their diabetes, and enjoying new foods and exercise. Interventions should include mental health support, incorporate formal and informal patient support structures, and address literacy issues. Health care providers and intervention personnel should be very concrete about how to do self-management tasks and guide patients on how to alter their diabetes regimens for social and other important life events.

Iowa Model of Evidence-Based Practice: Revisions and Validation.

BACKGROUND: The Iowa Model is a widely used framework for the implementation of evidence-based practice (EBP). Changes in health care (e.g., emergence of implementation science, emphasis on patient engagement) prompted the re-evaluation, revision, and validation of the model. METHODS: A systematic multi-step process was used capturing information from the literature and user feedback via an electronic survey and live work groups. The Iowa Model Collaborative critically assessed and synthesized information and recommendations before revising the model. RESULTS: Survey participants (n = 431) had requested access to the Model between years 2001 and 2013. Eighty-eight percent (n = 379) of participants reported using the Iowa Model and identified the most problematic steps as: topic priority, critique, pilot, and institute change. Users provided 587 comments with rich contextual rationale and insightful suggestions. The revised model was then evaluated by participants (n = 299) of the 22nd National EBP Conference in 2015. They validated the model as a practical tool for the EBP process across diverse settings. Specific changes in the model are discussed. CONCLUSION: This user driven revision differs from other frameworks in that it links practice changes within the system. Major model changes are expansion of piloting, implementation, patient engagement, and sustaining change. LINKING EVIDENCE TO ACTION: The Iowa Model-Revised remains an application-oriented guide for the EBP process. Intended users are point of care clinicians who ask questions and seek a systematic, EBP approach to promote excellence in health care.

Implementation of collaborative goal setting for diabetes in community primary care.

Collaborative goal setting (CGS) is a cornerstone of diabetes self-management support, but little is known about its feasibility and effectiveness during routine care. The aim of this study was to evaluate the implementation of an existing CGS intervention when integrated by primary care staff. Using a mixed-methods approach guided by the RE-AIM framework, intervention adoption, implementation, reach, and effectiveness were evaluated over 12 months. Three of four sites adopted the CGS intervention, in which 521 patients with type 2 diabetes (9-29 % of those targeted) received CGS. For those with suboptimal glycemic control (A1C ≥ 7.5 %), %A1C decreased by 1.1 for those receiving CGS (n = 204, p < 0.001) compared to 0.4 for a group who did not (n = 41, p = 0.23). Practice characteristics influenced adoption and implementation, while isolation of CGS from the remainder of clinical care likely influenced reach and effectiveness. CGS may benefit patients with diabetes, but a lack of integration by practice staff is a key barrier to overcome during implementation.

Culturally Conscientious Pain Measurement in Older African Americans.

Despite considerable pain disparities across the care continuum, pain is an understudied health problem in older ethnic minority groups, such as African Americans. Quality pain measurement is a core task in pain management and a mechanism by which pain disparities may be reduced. Pain measurement includes the methods (e.g., assessment approaches, tools) and metrics that researchers and clinicians use to understand the characteristics of pain. However, there are significant issues and gaps that negatively affect pain measurement in older African Americans. Of concern is insufficient representation in pain research, which impedes the testing and refinement of many standardized self-report, behavioral and surrogate report, physiological, and composite measures of pain. The purposes for this article are to discuss the status of pain measurement and factors that affect our knowledge on pain measurement in older African Americans, and to provide guidance for culturally conscientious pain measurement using the available literature.

Five-Year Bibliometric Review of Genomic Nursing Science Research.

PURPOSE: This bibliometric review profiles the focus, dissemination, and impact of genomic nursing science articles from 2010 to 2014. DESIGN: Data-based genomic nursing articles by nursing authors and articles by non-nurse principal investigators funded by the National Institute of Nursing Research were categorized into the Genomic Nursing Science Blueprint nursing areas. METHODS: Bibliometric content analysis was used. FINDINGS: A total of 197 articles met the inclusion criteria. Of these, 60.3% were on biologic plausibility, 12.1% on client self-management, 11.1% on decision making or decision support, 8.1% on family, and 4.0% on communication, with the remaining 4.0% of articles focused on other topics. Few (11.6%) addressed healthcare disparities in the study purpose. Thirty-four references (17.2%) were cited 10 or more times. CONCLUSIONS: Research-based genomic nursing science articles are in the discovery phase of inquiry. All topics were investigated in more than one country. Healthcare disparities were addressed in few studies. Research findings from interdisciplinary teams were disseminated beyond nursing audiences, with findings addressing biologic discovery, decision making or support, and family being cited most frequently. Gaps in the reviewed articles included cross-cutting themes, ethics, and clinical utility. Interdisciplinary research is needed to document clinical and system outcomes of genomic nursing science implementation in health care. CLINICAL RELEVANCE: Although the review identifies areas that are encountered in clinical practice, relevance to practice will depend on evaluation of findings and subsequent development of clinical guidelines.

Ethnic Differences in Nonverbal Pain Behaviors Observed in Older Adults with Dementia.

Research supports using nonverbal pain behaviors to identify pain in persons with dementia. It is unknown whether variations exist among ethnic groups in the expression of nonverbal pain behaviors in this special population. The purpose of this descriptive study was to examine ethnic differences in the presentation and intensity of nonverbal pain behaviors among African American, Caucasian, and Hispanic older adults with dementia when screened for pain by certified nursing assistants. Six certified nursing assistants were trained to review and score 28 video recordings of subjects with dementia for nonverbal pain behaviors using the Non-Communicative Patient's Pain Assessment Instrument. Chi-square was used to examine differences among ethnic groups with regard to the display of nonverbal pain behaviors, and ANOVA was used to evaluate differences in the intensity of overall pain across ethnic groups. Of the 168 assessments, pain words (28%), pain noises (29.8%), and pain faces (28%) were observed most often as indicators of pain. Rubbing, bracing, and restlessness were rarely noted. Chi-square analysis revealed ethnic differences in the expression of pain words (χ(2) = 19.167, p < .001). No significant differences were noted across ethnic groups with regards to overall pain intensity. These findings are the first to examine ethnic differences in nonverbal pain behaviors for older adults with dementia. However, future work should examine assessment tendencies of providers in a larger, more diverse sample.

Diabetes self-management: using the Colored Eco-Genetic Relationship Map to assess social support.

BACKGROUND: The positive association between individual social support and diabetes health outcomes is well established. However, most tools for assessing social support are highly structured and are rarely used in clinical settings and/or clinical outcomes research. A novel tool that has been shown to engage patients in the identification and use of their social networks is the Colored Eco-Genetic Relationship Map (CEGRM). OBJECTIVE: The purpose of this pilot study was to explore the feasibility of using the CEGRM adapted for eliciting information about how individuals with diabetes use their social networks to support their self-management efforts. METHODS: A sample of 18 adult patients with diabetes completed the newly created diabetes-CEGRM (D-CEGRM) alongside structured questions regarding social support for diabetes self-management. RESULTS: Whereas structured questions elicited information about participants' use of social networks, the D-CEGRM expanded on answers from structured questions by identifying both positive and negative aspects of social support, additional individual and community-based resources, and nuanced interpersonal information about the individuals involved. DISCUSSION: The D-CEGRM appears to be feasible and useful in assessing the social networks of adults with diabetes and how they are used to support tasks related to self-management. The information elicited by completing the D-CEGRM expanded on information collected through structured questions about social support in a way that might better address research questions and inform clinical decision making.

Development of the Huntington disease family concerns and strategies survey from focus group data.

Health concerns and management strategies among families of young and middle-age adults with Huntington's disease (HD) are unknown. This study developed and tested psychometric properties of the Huntington Disease Family Concerns and Strategies Survey (HDFCSS). Focus group data from 91 adult family members were used to develop content. Content analysis yielded four domains that were transferred into Personal, Person With HD, Community Health Care Services, and Strategies scales. Focus group data, expert validation, and cognitive interviews demonstrated survey content validity. Cronbach's alpha internal consistency coefficients for the scales were 0.83 or above. The measure can be used to generate reliable and valid data to identify adult family members' health-related concerns and management strategies for themselves and persons with HD.

Measuring gerontological research intensity in schools of nursing.

Because of the urgent need for more gerontological nursing research, it is critical for more schools of nursing to develop research-intensive environments within which faculty can develop programs of gerontological nursing research. Unfortunately, many schools have limited resources for developing the needed infrastructures and for acquiring the required expertise in gerontology and research. Many also lack the expertise and methods for assessing their current status so they may increase their gerontological nursing research intensity. To help schools assess their status and gaps in the essentials required for a research-intensive environment and gerontological nursing research, an instrument was developed to measure benchmarks of research intensity; it is described in this article. Initial results of pilot testing of the instrument, the revised instrument, and plans for future research are presented. Uses of the instrument for assessing and strengthening a school's research infrastructure and culture and for assisting with the development of faculty programs of gerontological nursing research are also discussed.