A Systematic Review of Caregiver Coping Strategies in Amyotrophic Lateral Sclerosis and Frontotemporal Dementia

Caregivers of patients diagnosed with amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD) often experience distressing symptoms related to their caregiving role. This review evaluates the existing literature on coping and their relationship to ALS and FTD caregiver psychological wellbeing. Published articles were identified via a systematic search of four databases (Cinahl Complete, Medline, Embase and PsycINFO). Overall, problem-focused coping strategies such as active coping and planning was used most often by ALS and FTD caregivers. Positive emotion-focused coping strategies such as acceptance were also frequently used by FTD caregivers. In contrast, dysfunctional coping strategies such as self-oriented reactions including self-blame, denial and self-preoccupation appeared to be the most salient coping strategy negatively impacting on caregiver psychological wellbeing. Six different coping measures were used and their psychometric properties were typically under-reported or satisfactory at best when reported. While coping is as an important aspect of caregivers’ experience, it remains unclear how the temporal dimensions of the coping process as well as stressor specificity influences psychological adaptation, and consequently, development of targeted caregiver intervention. The need for future studies to define the coping process more clearly in order to capture the unique stressors encountered by ALS and FTD caregivers throughout the different disease stages is emphasised.

Caregiver Task Difficulties at the End of Life: A Latent Cluster Analysis

Caregivers engage in myriad tasks from household help to complex medical care. However, little information is available on how caregivers experience individual tasks – particularly key end-of-life tasks such as managing breathing problems or patients' sadness and anxiety. The purpose of this study was therefore to assess task difficulty. Using data from the National Health and Aging Trends Survey and the National Survey on Caregivers (2015-2017), we assessed eleven caregiving tasks in 241 primary caregivers of care recipients in their last month of life. A latent cluster analysis revealed three key clusters: 1) pervasive difficulties, in which caregivers reported difficulty across most or all of the tasks; 2) minimal difficulties; and 3) emotional management difficulties, in which caregivers reported difficulty with managing sadness and anxiety and lower levels of difficulty on the other tasks. Weighted frequency analyses revealed that caregivers in the pervasive difficulties cluster were most likely to be filial caregivers (85% versus 63% of the full sample, p<0.05) or co-residing with the care recipient (49% versus 37% of the full sample, p<0.05). Caregivers identified as having pervasive difficulties were also more likely to report providing intensive care, more than 100 hours per week (54% versus 36% of the full sample, p<0.05). Care recipient condition was not associated with cluster membership. The findings highlight the need to consider caregiver coping at the task-level and have implications for understanding unmet needs. Future research will assess predictors of cluster membership and how task difficulties are associated with symptoms and well-being outcomes.

Caring for a Family Member With Mild Dementia: Perceptions, Connections, and Relational Dynamics With the Sacred

Researchers define spirituality as the search for or connection with the “sacred”, which is transcendent and considered blessed, holy, or revered. For some, the sacred is connection with a divinity (e.g., God, gods) and for others, a close relationship with something else bigger than themselves (e.g., the Universe, Nature, a life philosophy). Current research reports that family caregivers with a strong connection to the sacred, as compared with those who do not, have fewer symptoms of depression, more positive perceptions of the caregiving experience, improved coping, and bolstered resilience. However, there is limited research on the impact of spirituality on the perceptions of familial caregivers whose loved ones have recently been diagnosed with dementia. In this study, 27 family caregivers of persons with mild dementia (CDR=1) were interviewed using the Dimensions of Caregiving Interview (DCI, McGee & Carlson, 2013). The DCI identified positive psychological aspects of the caregiving experience, including spirituality. Three heuristic themes emerged from Directed Content Analysis: perceptions about the sacred reflect variability in the early part of the caregiving journey; specific characteristics, traits, and functions of the sacred shape caregiver coping and adjustment; and the relational dynamics between caregivers and the sacred inform adaptation. Recommendations for clinical practice and additional research are provided.

Discussing Personalized Prognosis Empowers Patients with Amyotrophic Lateral Sclerosis to Regain Control over Their Future: A Qualitative Study

The ENCALS survival prediction model offers patients with amyotrophic lateral sclerosis (ALS) the opportunity to receive a personalized prognosis of survival at the time of diagnosis. We explored experiences of patients with ALS, caregivers, and physicians with discussing personalized prognosis through interviews with patients and their caregivers, and in a focus group of physicians. Thematic analysis revealed four themes with seven subthemes; these were recognized by the focus group. First, tailored communication: physician’s communication style and information provision mediated emotional impact and increased satisfaction with communication. Second, personal factors: coping style, illness experiences, and information needs affected patient and caregiver coping with the prognosis. Third, emotional impact ranged from happy and reassuring to regret. Fourth, regaining control over the future: participants found it helpful in looking towards the future, and emphasized the importance of quality over quantity of life. Personalized prognosis can be discussed with minimal adverse emotional impact. How it is communicated—i.e., tailored to individual needs—is as important as what is communicated—i.e., a good or poor prognosis. Discussing personalized prognosis may help patients with ALS and their caregivers regain control over the future and facilitate planning of the future (care). For many patients, quality of life matters more than quantity of time remaining.

“It Takes a Village”: Factors Related to Coping in Families Raising Children with Disabilities

In this paper, the author argues that caregiver coping in raising children with disabilities extends to include not only the parents but the rest of the family system as well. Adjustment, social and emotional support, resiliency and adaptability, and flexibility are examined by the author as specific factors contributing to successful coping of parents, siblings, and grandparents in raising children with disabilities. A critical literature review by the author discusses the current state of knowledge in this area and explores themes of research in each of the categories described. The author discusses conflicting interpretations of prominent caregiver coping research by Mattingly and Ingstad, and concludes with a discussion of global perspectives on this issue and recommendations of further research to contribute to understandings of coping in family systems raising children with disabilities. Implications of this research relate to improving clinical practice, service provision, and public policy development on this topic.

The waiting period: Challenges and opportunities to support caregivers and persons with dementia during transitions to long-term care

Transitions to long-term care are significant and often challenging experiences for older adults with dementia and their caregivers, with waiting lists a common occurrence due to an aging population and a limited supply of long-term care beds. To better understand the complexities related to transitions to long-term care and inform clinical practice, a comprehensive project was undertaken and included an integrative literature review and a gap analysis of local practices in the interior of British Columbia. The literature review and gap analysis findings were analyzed and presented thematically through interrelated themes, including key concepts surrounding the phases of a transition, caregiver coping, and professional support. Four key recommendations arose from this project regarding continuity and coordination of care, discharge planning, post-discharge care, and evaluation. The strengths, limitations, and implications of this project are discussed, including next steps to mobilize knowledge related to the recommendations and influence evidence-informed changes in practice.

Beban Keluarga sebagai Caregiver Orang dengan HIV/AIDS

<p>The role of the family as a caregiver of people living with HIV/AIDS can cause a lot of stress. The purpose of this study was to explore the family burden as a caregiver of people living with HIV/AIDS. This research is qualitative research with a descriptive phenomenology approach. This research was conducted at RSUP H. Adam Malik in Medan City. Participants in this study were 4 family members who care for family members infected with HIV who were taken by purposive sampling technique. Participants' inclusion criteria were ≥17 years of age who were able to speak Indonesian and were able to tell about the burdens experienced while caring for people living with HIV/AIDS. The themes found included psychological burdens, social burdens, family problems, and role conflicts. The research conclusions illustrate that families who are caregivers in carrying out their roles are not easy because they cause psychological burdens, social burdens, economic burdens, family problems, and role conflicts. Nurses can provide nursing interventions to increase caregiver coping to reduce the burden they experience.</p>

Examining Caregiver Coping and Clinic Attendance in Pediatric Sickle Cell Disease

Sickle Cell Disease (SCD), the most common genetic disorder in the U.S., primarily affects youth of African or Latino backgrounds. Regular clinic attendance promotes positive health outcomes in pediatric SCD. Caregivers of youth with SCD endorse high levels of stress that may disrupt clinic attendance. Improved caregiver coping may help address barriers to clinic attendance in SCD families. Sixty-three caregivers and youth (Mage = 13.2, 60.3% male) completed the Responses to Stress Questionnaire- Sickle Cell Disease (RSQ-SC). The RSQ-SC assesses primary control engagement (PCE), secondary control engagement (SCE), and disengagement coping. The researchers tabulated percent of pediatric hematology appointments attended, canceled by patient/provider/due to hospitalization, and no-showed over the past year via medical chart review. Results indicated a significant positive association between caregiver education and percentage of appointments attended (r = .295, p = 0.19). A hierarchical regression revealed that caregiver coping did not predict clinic attendance [F (4, 58) = 2.114, p = 0.091, R2 Δ = 0.040] when controlling for caregiver education. In isolation, caregiver coping may not be an effective target for interventions focused on improving adherence to pediatric hematology appointments.