Exploring illness identity among children and youth living with cancer: A narrative review.

BACKGROUND: Children and youth with cancer may find it challenging to integrate illness into their pre-existing identity-a phenomenon known as illness identity. In this critical narrative review, we explored illness identity among children and youth with cancer. METHODS: Three academic databases were searched. Twenty-two articles were included in this review and each underwent thematic analysis. RESULTS: Cancer has both positive and negative influences on the identities of children and youth. Illness identity is expressed creatively through various communicative outlets. Further, external processes such as social support may influence cancer identity. A few studies cited cancer as a hindrance to adult identity development. CONCLUSIONS: Cancer has a profound impact on identity formation among children and youth. Many normative assumptions about time, identity, and child and youth development underlie the existing literature. Future researchers may adopt a critical lens to be inclusive of diverse identity experiences among children and youth with cancer.

Experiences of people with multiple sclerosis and clinicians in using cognitive behavioural therapies for hidden symptoms: a systematic review and meta-aggregation.

PURPOSE: Cognitive behavioural therapies (CBTs) are a standard of care for treatment of many 'hidden symptoms' in people with MS (PwMS), such as stress, depression, and fatigue. However, these interventions can vary widely in formatting and may not be tailored for PwMS. To optimize CBTs for MS, understanding the experiences of PwMS and clinicians is essential. This systematic review and meta-aggregation synthesizes existing qualitative data on stakeholder perspectives of CBTs for PwMS. METHODS: Systematic searches across five major electronic databases were conducted. Studies reporting qualitative data were identified. Two reviewers performed screening, quality assessment, data extraction, and certainty of evidence assessments. Meta-aggregation was performed as per the Joanna Briggs Institute approach, entailing qualitative data extraction, developing categories, and synthesizing overall findings. RESULTS: Twenty-eight studies were included in this review, comprising data from 653 PwMS and 47 clinicians. In the meta-aggregation, 122 qualitative results were extracted and grouped into nine categories. Categories were then combined into six synthesized findings: (1) setting the context-life with MS, (2) reasons for participating in CBTs, (3) acceptability of and experiences with participating in CBTs, (4) perceived benefits of CBTs, (5) perceived challenges with CBTs, and (6) suggestions to improve CBTs for PwMS. CONCLUSIONS: A range of benefits including psychological, social, and lifestyle improvements were reported, but varied based on the design of the CBT intervention. Future CBT interventions should be tailored to participant needs, delivered in group settings, offer online options, and be delivered by a trained facilitator familiar with MS. Further exploration of the ideal CBT design for PwMS, as well as engagement with caregivers and clinicians treating MS, is warranted.

Qualitative needs assessment for the development of a smart thumb prosthesis.

PURPOSE: To critically explore experiences following thumb amputation and delineate elements of an ideal thumb prosthesis from the end user perspective. METHODS: A qualitative study was undertaken with end user stakeholder groups, which included persons with a thumb amputation, rehabilitation professionals, and prosthetists. Analysis proceeded in line with conventional content analysis. RESULTS: Six patients with traumatic thumb amputation and eight healthcare providers (HCPs) were interviewed. Six themes were identified. The first theme discussed the impact of losing a thumb upon function, occupational activities, and mental wellbeing. The second theme reflected the idiosyncratic nature of thumb amputees, including their goals and nature of injury. The third theme stressed the costs associated with obtaining a thumb prosthesis. The fourth theme explored patient frustration and causes of device abandonment. Theme five summarized opinions on currently available thumb prostheses, and theme seven was the ideal design for a thumb prosthetic, including sensory elements and materials. CONCLUSIONS: Representative data from stakeholders mapped the current status of thumb prostheses. Preferences for an ideal thumb prosthesis included a simple, durable design with the ability to oppose, grasp, and sense pressure. Affordable cost and ease of fit emerged as systemic objectives.

Provides insight into the experiences of individuals following thumb amputation.Identifies challenges that may lead to prosthetic abandonment so that these can be considered and addressed by rehabilitation professionals.Identifies positive elements and preferred materials in current prosthetics so that rehabilitation professionals may incorporate these more frequently.

Understanding the Goals of Older Adults with Complex Care Needs, Their Family Caregivers and Their Care Providers Enrolled in a Patient Navigation Program.

Patient navigation models of care are being used to support hospital-to-home transitions. The present paper aimed to explore the goals important to older adults, their caregivers, and care providers as they transition from hospital-to-home and how, if at all, patient navigation can enable goals of care. Data were comprised of 94 interviews with 16 older adults, 5 family caregivers and 48 healthcare providers. Data were analyzed thematically and similarities and differences in goals were identified. Shared goals included having someone to count on and easy access to services. Older adults expressed the goal of independence, whereas family caregivers and healthcare providers noted safety. Caregivers noted goals of developing skills. While patient navigation was viewed as meeting goals of care by participants, future research is required to determine how patient navigation can support goal setting as a standard clinical practice and the long-term patient outcomes of meeting goals.

Exploring the psychosocial needs of persons with lower extremity amputation and feasibility of internet cognitive behavioural therapy: a qualitative study.

PURPOSE: Following major lower extremity amputation (LEA), patients experience significant emotional distress and are at risk for anxiety and depression. There is a lack of mental health supports for this population, and internet-based cognitive behavioural therapy (iCBT) may be a useful resource to meet this need. The purpose of this study was to use a qualitative approach to explore the mental health needs of LEA patients and to gauge their attitudes of the use of iCBT to help them cope with their amputation. METHODS: Semi-structured qualitative interviews were conducted with inpatients and outpatients with LEA recruited from a major urban rehabilitation hospital. Data were analysed using inductive codebook thematic analysis (TA). RESULTS: Ten interviews were completed with individuals with LEA. The main themes identified were: (1) Fixating on the past; (2) Worry about the future; (3) Unmet mental health needs; (4) Barriers to Mental Health Support; (5) Importance of peer support; and (6) Tailoring iCBT. CONCLUSIONS: Our findings highlight that patients with LEA are open to learning more about iCBT to meet their mental health needs. Key iCBT implementation considerations include taking into account issues of stigma associated with mental health, timing of delivery, levels of digital literacy, online security, and interactive content.IMPLICATIONS FOR REHABILITATIONFollowing lower extremity amputation (LEA), people experience significant emotional distress and are at risk for the development of anxiety and/or depression.Patients with LEA are receptive to an online mental health resource (i.e., internet-based cognitive behavioural therapy [iCBT]) but it needs to be tailored to meet the various mental health needs and digital literacy of the LEA population.The use of an implementation science approach can help identify factors related to the development and potential uptake of an iCBT for patients with LEA.

Conceptualization, use, and outcomes associated with compassion in the care of people with multiple sclerosis: a scoping review.

OBJECTIVE: Compassion is widely regarded as an important component of high-quality healthcare. However, its conceptualization, use, and associated outcomes in the care of people with multiple sclerosis (PwMS) have not been synthesized. The aim of this review is to scope the peer reviewed academic literature on the conceptualization, use, and outcomes associated with compassion in the care of PwMS. METHODS: Studies were eligible for inclusion if reporting primary research data from quantitative, qualitative, or mixed-methods studies on the conceptualization, use, and outcomes associated with compassion in the care of PwMS. Relevant studies were identified through searching five electronic databases (CINAHL, Cochrane Library, EMBASE, MEDLINE, and PsycINFO) in January 2022. We followed the guidance outlined in the Joanna Briggs Institute (JBI) manual for evidence synthesis, and also referred to the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews Checklist (PRISMA-ScR). Simple descriptive methods were used to chart quantitative findings, and a descriptive approach with basic content analysis was employed to describe qualitative findings. RESULTS: Fifteen studies were included (participant n = 1722): eight quantitative, six mixed-methods, one exclusively qualitative. Synthesized qualitative data revealed that PwMS conceptualize compassion as involving self-kindness, agency, and acceptance. PwMS report using self-compassion in response to unpleasant sensations and experiences. Quantitative findings suggest that compassion may mediate benefit finding, reduced distress, and improved quality of life (QoL) in PwMS, that those with the condition may become more compassionate through time, and that self-compassion specifically can be increased through training in mindfulness. In this context, greater self-compassion in PwMS correlates with less depression and fatigue, better resilience and QoL. Among studies, self-compassion was the most common outcome measure for PwMS. CONCLUSIONS: A nascent literature exists on the conceptualization, use, and outcomes associated with compassion in the care of PwMS. Further research is required to better understand what compassion means to PwMS and those caring for them. However, self-compassion can be cultivated among PwMS and may be helpful for managing unpleasant somatic symptoms and in benefit finding. Impact on other health outcomes is less clear. The use of compassion by health care providers in the care of PwMS is unstudied.

A systematic review and meta-analysis exploring the efficacy of mindfulness-based interventions on quality of life in people with multiple sclerosis.

BACKGROUND: Quality of life (QoL) is commonly impaired among people with multiple sclerosis (PwMS). The aim of this study was to evaluate via meta-analysis the efficacy of Mindfulness-based interventions (MBIs) for improving QoL in PwMS. METHODS: Eligible randomized controlled trials (RCTs) were identified via searching six major electronic databases (MEDLINE, EMBASE, CINAHL, Cochrane Central Register of Controlled Trials, AMED, and PsycINFO) in April 2022. The primary outcome was QoL. Study quality was determined using the Cochrane Collaboration risk of bias tool. Meta-analysis using a random effects model was undertaken. Effect sizes are reported as Standardized Mean Difference (SMD). Prospero ID: 139835. RESULTS: From a total of 1312 individual studies, 14 RCTs were eligible for inclusion in the meta-analysis, total participant n = 937. Most studies included PwMS who remained ambulatory. Cognitively impaired PwMS were largely excluded. Comorbidities were inconsistently reported. Most MBIs were delivered face-to face in group format, but five were online. Eight studies (n = 8) measured MS-specific QoL. In meta-analysis, overall effect size (SMD) for any QoL measure (n = 14) was 0.40 (0.18-0.61), p = 0.0003, I2 = 52%. SMD for MS-specific QoL measures (n = 8) was 0.39 (0.21-0.57), p < 0.0001, I2 = 0%. MBI effect was largest on subscale measures of mental QoL (n = 8), SMD 0.70 (0.33-1.06), p = 0.0002, I2 = 63%. Adverse events were infrequently reported. CONCLUSIONS: MBIs effectively improve QoL in PwMS. The greatest benefits are on mental health-related QoL. However, more research is needed to characterize optimal formatting, mechanisms of action, and effects in PwMS with more diverse social, educational, and clinical backgrounds.

Psychosocial group therapy interventions for patients with physical disabilities: A scoping review of implementation considerations.

OBJECTIVE: Group therapy is an intervention that that has been well-studied in patients with medical illness and shown to optimize patients' wellbeing and mental health resource utilization. However, its implementation and effectiveness have not been adequately studied in those with physical disabilities. This review addresses current gaps by synthesizing the literature to examine implementation considerations in the use of psychosocial group therapy for anxiety and depression in individuals with physical disabilities. METHOD: This review adhered to Arksey and O'Malley's methodological framework and the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews Checklist. Studies were identified through MEDLINE, EMBASE, PSYCINFO, and CINAHL. Included studies were qualitative, quantitative, or mixed methods research on participants with a physical disability, and undergoing psychosocial group therapy to address anxiety/depression. RESULTS: Fifty-five studies were included in the review. The most common physical disabilities were multiple sclerosis (n = 31) and Parkinson's disease (n = 13). Group Cognitive Behavioral Therapy was the most commonly used intervention, facilitated by individuals with formal mental health training. A majority of therapy sessions included cohorts of up to 10 patients, and occurred weekly. Almost half of the studies (n = 27) reported high adherence rates (80%-99%), and a large proportion found group therapy led to improvements in their samples on a range of outcomes. CONCLUSION: Group therapies to address anxiety and depression are diverse, widely used, effective, and well-adhered to. This review may help practitioners develop, implement, and evaluate group programming for individuals with physical disabilities to address anxiety and depression. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Conceptualization, use, and outcomes associated with empathy and compassion in physical medicine and rehabilitation: a scoping review.

The purpose of this review is to scope the literature on the conceptualization, use, and outcomes associated with empathy and compassion in physical medicine and rehabilitation. Eligible studies included quantitative, qualitative, or mixed-methods research that presented primary data on the conceptualization, use, and outcomes associated with empathy and compassion in physical medicine and rehabilitation. Relevant studies were identified through CINAHL, Cochrane Library, EMBASE, MEDLINE, and PEDRO. Twenty-four studies were included (participant n = 3715): 13 quantitative, six mixed-methods, and five qualitative. In qualitative analysis, empathy and compassion were conceptualized as both intrinsic and exhibitory. Where self-compassion was examined as an intervention for patients, improvements in anxiety, depression, and quality of life were reported. Survey data suggested that when rehabilitation health care providers were perceived to be more empathic, patients reported greater treatment satisfaction, acceptance, adherence, and goal attainment. Individuals receiving and health care providers who deliver rehabilitative care conceptualize empathy and compassion as valuable in physical medicine and rehabilitation settings, with cognitive and behavioural elements described. Health care provider empathy and compassion-based interventions may influence outcomes positively in this context. More research is needed to understand the mechanisms of action of empathy and compassion and effectiveness in physical medicine and rehabilitation settings.