The impact of prior care experience on nursing students' compassionate values and behaviours: A mixed methods study.

BACKGROUND: Compassion is critical to the provision of high-quality healthcare and is foregrounded internationally as an issue of contemporary concern. Paid care experience prior to nurse training has been suggested as a potential means of improving compassion, which has been characterised by the values and behaviours of care, compassion, competence, communication, courage, and commitment. There is however a dearth of evidence to support the effectiveness of prior care experience as a means of improving compassion in nursing. OBJECTIVE: To explore the impact of paid prior care experience on the values and behaviours of pre-registration nursing students indicated as characterising compassionate care. DESIGN: Longitudinal mixed methods design employing a modified concurrent triangulation strategy, comprising two work packages. Work package 1 was qualitative, and work package 2 adopted a concurrent embedded strategy with a dominant quantitative component. Research is reported in accordance with the Good Reporting of a Mixed Methods Study framework. SETTING(S): Three United Kingdom universities. PARTICIPANTS: Pre-registration nursing students attending one of three universities, and individuals who had previously participated in a Health Education England paid prior care experience pilot. Participant numbers at time point 1 were questionnaires n = 220, telephone interviews n = 10, and focus groups n = 8. METHODS: Work package 1 consisted of longitudinal semi-structured telephone interviews. Work package 2 comprised validated online questionnaires measuring emotional intelligence, compassion satisfaction and fatigue, resilience, psychological empowerment, and career commitment (as proxies of compassionate values and behaviours), and focus groups. Qualitative data were thematically analysed. Quantitative data were analysed via Analysis of Variance in SPSS v 26. RESULTS: Qualitative findings suggest that prior care experience has both positive and negative effects on students' compassionate values and behaviours, however positive effects do not extend to qualification. No statistically significant differences were found in any of the quantitative outcome measures between participants with and without paid prior care experience. A statistically significant increase in compassion fatigue was identified in both groups of participants post-qualification. Paid prior care experience did not prevent participants from experiencing reality shock on becoming a student or on qualification. CONCLUSIONS: There is insufficient evidence of longitudinal beneficial impact to recommend paid prior care experience as an effective intervention to foster nursing students' compassionate values and behaviours. These findings do not support mandating a period of paid care experience as a prerequisite for entry into nurse education. REGISTRATION: N/A. Tweetable abstract Insufficient evidence of longitudinal beneficial impact to recommend prior care experience as an effective intervention to foster nursing student compassion @PriorCareExp @Sarah_F_R.

Quality of life of family carers of people living with dementia: review of systematic reviews of observational and intervention studies.

INTRODUCTION: Family members are the primary source of support for the growing number of people living with dementia (PLWD) worldwide. However, caring for a person living with dementia can have detrimental impacts on the carer quality of life (QoL). This review of systematic reviews explored the factors associated with the QoL of family carers of PLWD and interventions aimed at improving their QoL. SOURCES OF DATA: Several health-related databases (PUBMED, Psychinfo, Google Scholar and COCHRANE) were consulted in November 2022. Nineteen systematic reviews were included, and their methodological quality was assessed via AMSTAR-2. AREAS OF AGREEMENT: Better carer physical and mental health, provision of formal support, relationship quality between carers and PLWD, as well as positive psychological traits were associated with better carer QoL. There is no one-size-fits-all intervention that can improve the QoL of all carers, but promising results were found in most of the interventions. AREAS OF CONTROVERSY: There is inconsistency in evidence on the association between the carer age and QoL. The use of a wide range of QoL measures, particularly generic QoL scales, has contributed to inconsistencies when comparing the efficacy of interventions. GROWING POINTS: Evidence suggests the need for a person-centred approach to improving carer QoL, considering individual and contextual needs as well as the continuum and progressive nature of dementia care. TIMELY AREAS FOR DEVELOPING RESEARCH: Future research should be focused on understanding how to best implement and measure person-centred care approaches to carer QoL, including cost-effectiveness. More qualitative studies are necessary to explore carer negative and positive experiences of QoL.

The impact of care experience prior to commencing pre-registration nurse education and training: A scoping review.

OBJECTIVES: Compassion in nursing and interventions to support it are of international relevance and concern. Prior care experience as a prerequisite for entry into pre-registration nurse education is suggested as a means of improving compassion. The impact of prior care experience has not been comprehensively reviewed, therefore the potential effectiveness of prior care experience as a means of improving compassion is unknown. The scoping review question was 'What is known about the impact of care experience prior to commencing pre-registration nurse education and training?' The primary objective was to scope and synthesise existing literature relating to the topic and ascertain key themes pertaining to impact. A secondary objective was to appraise literature, to contextualise findings and assess the state and stage of knowledge and research in the area. DESIGN: The review was guided by Arksey and O'Malley's methodological framework and is reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews Checklist. DATA SOURCES: Health sciences databases CINAHL, Medline and PubMed. METHODS: Databases were searched in February 2019, updated August 2021. Data (study characteristics, findings, methodological observations) were extracted from papers meeting inclusion criteria (including peer-reviewed empirical papers with English language, electronic full-text available) and findings thematically analysed. RESULTS: Forty-five papers from 14 countries were included. The majority (64.4 %) were published in Europe (31.1 % in the United Kingdom) between 2010 and 2021 (69 %), 60 % from 2013. Four qualitative themes (compassionate care, commitment, competence and communication) describe the impact of prior care experience, which was variable. CONCLUSIONS: Evidence to support the effectiveness of prior care experience as a prerequisite for entry into nurse education to improve compassion, is inconsistent and insufficient. The literature displays methodological limitations and conclusions should be interpreted in light of these caveats. Recommendations are made for future research, to improve quality and comparability.

"I Cry. I Simply Cry." An Ethnography of a Lymphedema Summer Camp.

Background: The aim of this study was to explore how self-management is taught, learnt, and experienced during a 3-day educational Lymphedema Camp for parents of children with lymphedema. Methods: Participants (professionals, parents, and children) were observed during camp activities and interviewed informally and formally in focus groups. The embodied nature of the experience expressed by professionals, parents, and researchers became the analytical focus for understanding the felt tensions in the teaching and learning of self-management to families. Findings: The affective sensibilities associated with the uncertainties involved in teaching and learning self-management skills were palpable given that: young people are now expected to take up strict time-consuming self-management regimens (often via the support of a parent) where "evidence-based" outcomes are uncertain or may not match the outcomes wanted by a young person (varying in age and therefore ability or willingness to engage); or where there are tensions within the family; and the variety of different professionals involved means that techniques varied but where these professionals also lacked the necessary skills training to guide them in how to teach self-management. An analytical focus on the distress, doubt, fear, loneliness, guilt, and moralism felt by professionals, parents, and the researchers supports us to identify the character of the problems associated with performing best practice care guidance where there is a lack of practical support or resources for how self-management in this population should be achieved. Conclusion: To avoid these issues more training and research are needed on "how" to self-manage and stop victim-blaming that generates tensions and drives a wedge between the carer and the cared-for. When systemic problems get located with individuals (professionals, parents, or children), this directs our attention and understanding away from systems of care that lack coordination, may be under-resourced, and where effective training is absent.

Development of Self-Efficacy Tools for Parents and Professionals Caring for Children and Young People with Lymphedema (ILF Parent SE and ILF Professional SE).

Background: Self-management is a key aspect of lymphedema treatment and self-efficacy is a key factor linked to long-term adherence to treatment. The study aimed to generate self-efficacy scales to support the care of children and adolescents with lymphedema to support self-management. Methods and Results: Parents of children with lymphedema and the professionals caring for them were recruited during a lymphedema educational camp. Six individual semistructured focus groups were undertaken in Italian, French, and English (three for parents and three for professionals) with simultaneous translation. Scale item generation was developed using interpretative phenomenological analysis and adopted Bandura's self-efficacy concept. Two self-efficacy tools were developed from research with 26 parents and 14 professionals. The parental tool (ILF parent SE) has 6 domains and 44 items: school; home and leisure; understanding the condition and treatment, and managing child and parent emotions. The professional tool (ILF Professional SE) has 4 domains and 21 items. This scale has two parts; the first indicates the level of professional autonomy in decision making, and the second covers assessment and treatment, patient understanding, and managing emotional reactions. Both tools adopt a 0- to 100-point scale using a 10-unit interval with 0 (cannot do) through to 100 (high certainty of being able to do). Initial face validity has been undertaken. Conclusion: Self-efficacy has emerged as a complex issue faced by parents and professionals involved with children and young people with lymphedema. By being able to assess the challenges parents face in self-efficacy individualized programs can be developed that will assist families in managing this complex disease and lead to greater well-being. Increased professional self-awareness will help the development of mentorship programs to support professionals dealing daily with the stress of managing a rare disease in which the outcome may be uncertain.

Assessing risk of self-harm in acute paediatric settings: a multicentre exploratory evaluation of the CYP-MH SAPhE instrument.

OBJECTIVE: To psychometrically assess the Children and Young People-Mental Health Self-harm Assessment in Paediatric healthcare Environments (CYP-MH SAPhE) instrument for the identification of immediate risk of self-harm in CYP, aged 10-19 years, in acute paediatric wards or emergency departments. DESIGN: The CYP-MH SAPhE Instrument was developed through a robust scoping review and Delphi consensus with 30 clinicians/topic experts. To evaluate the psychometric properties, a multicentre exploratory study was conducted. SETTING: Three acute hospitals in the UK. PARTICIPANTS: 163 CYP presenting at acute hospital settings with primary mental health (cases) or physical health (non-cases) conditions. PRIMARY AND SECONDARY OUTCOME MEASURES: Psychometric properties of the CYP-MH SAPhE instrument were evaluated through Principle Axis Factoring (PAF) with Oblimin (Kaiser normalisation) alongside measures of internal consistency (Cronbach's α), convergent, discriminant and face validity. RESULTS: PAF of the dichotomous items (n=9) loaded onto three factors (1) behaviours and intentions; (2) suicidality and (3) self-harm. Factors 1 (Cronbach's α=0.960) and 3 (Cronbach's α=1) had high internal consistency. There was: good level of agreement between raters (kappa=0.65); a moderately positive correlation between the CYP-MH SAPhE instrument and the Columbia-Suicide Severity Rating Scale; and discrimination between cases and non-cases across the three factors (factor 1: m=88 vs 70; factor 2: m=102 vs 70; factor 3: m=104 vs 68). Assessment of face validity resulted in six items being removed, culminating in an eight question, rapid assessment instrument. CONCLUSIONS: The results support the CYP-MH SAPhE Tool as a potentially reliable and valid instrument to identify immediate risk of self-harm in CYP presenting to acute paediatric healthcare environments, which is a burgeoning and significant global health issue.

Informal carers' experiences of caring for someone with Multiple Sclerosis: A photovoice investigation.

OBJECTIVES: This study explores the lived experiences of carers of people with Multiple Sclerosis (MS), specifically in relation to their quality of life (QoL), through the use of images and narratives, with the aim of gaining a nuanced insight into the complex nature of QoL in the MS caregiving context. DESIGN: Real-time qualitative design using the photovoice method. METHODS: Twelve MS carers (aged 30-73 years) took photographs of objects/places/events that represented enhancement or compromise to their QoL and composed written narratives for each photograph based on their experiences of caregiving. In total, 126 photographs and their corresponding narratives were analysed using content analysis. RESULTS: Seven inter-related themes were identified. MS caregiving-related challenges, sense of loss (e.g., loss of activities), emotional impact (e.g., feeling lonely), urge to escape, and sense of anxiety over the unpredictability of MS carer role were discussed in relation to the negative experiences that compromised their QoL. The themes precious moments (e.g., time spent with loved ones or hobbies) and helpful support (e.g., family and pets) encompassed participants' positive experiences that enhanced their QoL. CONCLUSIONS: Findings demonstrated the multi-faceted and complex nature of MS caregiver's QoL and highlighted that although the experiences of MS carers were mostly negative, there were also some positive aspects to caregiving, that helped enhance carers' QoL by ameliorating these negative experiences. These findings can be used to inform support programmes and enhance service provision for MS carers.

The implementation of resilience based clinical supervision to support transition to practice in newly qualified healthcare professionals.

BACKGROUND: Healthcare workforce shortages are an international issue. This service development targets the contributory element of poor retention amongst newly qualified nurses. Resilience Based Clinical Supervision is underpinned by the principles of Compassion Focused Therapy. It aims to alleviate work related stress and support individuals to reframe their experiences through structured and reflective discussion. It incorporates skills which develop proficiency in mindfulness, distress tolerance and positive reframing. OBJECTIVES: To explore the acceptability, feasibility, and experience of Resilience Based Clinical Supervision to support transition to practice in newly qualified nurses. DESIGN: An extensive program of champion (N = 40) and cascade (N = 78) training for facilitators was implemented as a development of their standard transition to practice package. SETTINGS: Six pilot sites within the UK. PARTICIPANTS: Newly qualified nurses (266) received a minimum of six Resilience Based Clinical Supervision sessions over a one-year period. METHODS: Data were gathered via eleven focus groups (n = 48). A deductive and collaborative approach to content analysis was utilised to consider the perceived outcomes, challenges, experience and best practice amongst both facilitators and nurses' transitioning from student to registered practitioner. RESULTS: Analysis showed the new registrants were extending and accepting compassion to and from their peers, signifying the compassionate flow within the group setting. This was continued through the development of self-care strategies utilised in practice, which allowed compassion to flow into patient care and towards colleagues. CONCLUSIONS: The main perceived outcome of RBCS was recognised as restorative. However, the growth of skills for self-care, emotional intelligence, and confidence to challenge poor working conditions also indicated a developmental function. These perceived outcomes have the potential to result in positive implications for workforce retention. Importantly, findings draw attention to the importance of wider organisational commitment and structures which support and respond to RBCS facilitator and participant concerns.

Communication with patients using negative wound pressure therapy and their adherence to treatment.

OBJECTIVE: The purpose of this study was to explore the challenges of communication between patients and health professionals, and patient adherence to treatment for hard-to-heal wounds when using negative wound pressure therapy (NPWT). METHODS: Face-to-face, semi-structured interviews were conducted with patients undergoing NPWT. Specific features of the NPWT device were the priority for discussion although other factors central to communication and adherence were also explored. RESULTS: A total of 24 patients took part in the study. Data saturation was achieved during the analysis. Patients required ongoing support to understand complex and often protracted treatment and this was particularly important when specialist technology was used. A distinction was highlighted between those who decided not to adhere with therapy and those who did so unintentionally. Participants faced difficulties in their communications with health professionals and in ensuring their needs were listened to and addressed. CONCLUSION: Further research is needed to achieve a better understanding of this distinction and to evaluate interventions which can sustain adherence behaviours. Further exploration of how to establish concordant patient/health professional communications is warranted.

An International Validation of a Clinical Tool to Assess Carers' Quality of Life in Huntington's Disease.

Family carers of individuals living with Huntington's disease (HD) manage a distinct and unique series of difficulties arising from the complex nature of HD. This paper presents the validation of the definitive measure of quality of life (QoL) for this group. The Huntington's Disease Quality of Life Battery for Carers (HDQoL-C) was expanded (n = 47) and then administered to an international sample of 1716 partners and family carers from 13 countries. In terms of the psychometric properties of the tool, exploratory analysis of half of the sample demonstrated good internal consistency and reliability. Some items on the full version did not meet psychometric thresholds and a short version (HDQoL-Cs) (n = 23) was developed based on more stringent criteria. This was achieved using standard psychometric item reduction techniques to both increase reliability and reduce the burden of carers completing the scale. Confirmatory factor analysis of the model structure showed a good fit for all factors and indicated that the HDQoL-C and HDQoL-Cs are psychometrically robust measures of QoL. We found that carers who lived with and looked after their spouse/partner had reduced sense of coping, hope for the future, and overall QoL. Carers with children who were at risk carried the gene or were symptomatic also had poorer QoL outcomes. Findings indicated the HDQoL-C and HDQoL-Cs are valid in multiple languages and across varied cultures as measures of self-reported QoL in family carers of individual's living with HD. These psychometrically validated tools can aid and guide the implementation of therapeutic interventions to improve life quality in this population and research into international and cross-cultural carer experiences. The HDQoL-Cs is recommended as the definitive international measure of HD carer QoL.

Evaluation of an evidence-based model of safeguarding clinical supervision within one healthcare organization in the United Kingdom.

AIM: Clinical supervision has been recognized as a valuable mechanism through which healthcare professionals may evaluate, reflect upon and develop their clinical practice within the context of safeguarding. However, while there is a general consensus with regard to the value of clinical supervision there are multiple approaches to utilization in practice. This brief communication provides an overview of an evaluation of one model of safeguarding clinical supervision which was explicitly developed to support healthcare professionals in their everyday practice. METHODS: The current study used a survey approach, which involved the development and administration of an online anonymous survey with clinical supervisors and supervisees working within the one service of the Trust. RESULTS: The survey results showed that individuals were overall confident, knowledgeable and satisfied with their safeguarding supervisions. However, individuals at a lower band were significantly less positive about supervision, particularly in relation to how much they felt enabled to explore their safeguard concerns, how much they felt equipped to provide/receive safeguarding supervision and about how much they understood clearly the difference between managerial supervision/clinical and safeguarding supervision. CONCLUSION: A number of key recommendations arising from the findings of the evaluation are presented in this article and are considered in terms of the question 'what constituents form the core components of a successful Safeguarding Supervision Framework relationship?'

Exploring the Reliability and Validity of the Huntington's Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population.

Huntington's disease (HD) is a rare genetic neurodegenerative disorder that causes motor disorders, neuropsychiatric symptoms and a progressing deterioration of cognitive functions. Complex issues resulting from the hereditary nature of HD, the complexity of symptoms and the concealed onset of the disease have a great impact on the quality of life of family carers. The caregivers are called the "forgotten people" in HD, especially with relation to genetic counseling. This study aims to explore the reliability and validity of the Huntington's Disease Quality of Life Battery for carers (HDQoL-C) within a Polish population. A total of 90 carers recruited from the Enroll-HD study in Polish research centers of the European Huntington's Disease Network completed a polish translation of the HDQoL-C. Data were subjected to Principle Components Analysis (PCA) and reliability measures. The Polish version of the shortened versions of the HDQoL-C is similarly valid compared to the original English version and suitable for use within this population. The HDQoL-C has previously demonstrated a wide range of benefits for practitioners in capturing and understanding carer experience and these benefits can now be extended to Polish speaking populations.

Factor and reliability analysis of a brief scale to measure motivation to change lifestyle for dementia risk reduction in the UK: the MOCHAD-10.

BACKGROUND: Modifying lifestyle risk factors for dementia is a public health priority. Motivation for change is integral to the modification of health-related risk behaviours. This study investigates the psychometric properties of the previously validated tool entitled 'Motivation to Change Lifestyle and Health Behaviours for Dementia Risk Reduction Scale' (MCLHB-DRR) for use in the UK. METHODS: A sample of 3,948 individuals aged 50 and over completed the 27-item MCLHB-DRR online. The psychometric properties of the scale were explored via Exploratory Principal Axis Factoring (PAF) with Oblimin rotation. Confirmatory Factor Analysis (CFA) was used to confirm the factor structure using chi-square (χ2), the goodness-of-fit index (GFI), the comparative fit index (CFI), the root mean square error of approximation (RMSEA) and Root Mean Square Residual (RMR) as fit indices to evaluate the model fit. Internal consistency (Cronbach α) was measured for the final scale version. RESULTS: Exploratory Factor Analysis (EFA) resulted in a parsimonious 10-item, two-factor structure (5 items each, factor loadings > 0.3) that explained 52.83% of total variance. Based on the Pattern Matrix, Factor 1 was labelled "Positive Cues to Action" and Factor 2 was labelled "Negative Cues to Action". After addressing some errors in covariances, CFA showed a good fit where all fit indices were larger than 0.90 (GFI = 0.968, CFI = 0.938) and smaller than 0.08 (RMSEA = 0.072, RMR = 0.041). The standardized coefficients of Factor 1 and Factor 2 ranged from 0.30 to 0.73 and were all statistically significant (p < 0.001). The final scale showed moderate to high reliability scores (Factor 1 α = 0.809; Factor 2 α = 0.701; Overall α = 0.785). CONCLUSIONS: The new MOCHAD-10 (Motivation to Change Behaviour for Dementia Risk Reduction Scale) is a short, reliable and robust two-factor, 10-item clinical tool for use in preventative health care and research to evaluate motivation to change lifestyle for dementia risk reduction.

A Study Using Visual Art Methods to Explore the Perceptions and Barriers of Self-Management in Children and Adolescents with Lymphedema.

Background: The aims of this study were to explore, using visual art methodology, how children and adolescents perceive their lymphedema and conceptualize the barriers and enablers in self-management and to explore the role of an educational camp in promoting self-efficacy. Methods: Participants (speaking English, French, and Italian) were recruited during an educational camp for children with lymphedema. Children and adolescents used different methodologies to depict living and self-managing their condition. Younger children (aged 5-12 years) drew pictures, and all children and adolescents (aged 5-18 years) were given cameras and asked to take photographs that depicted their experience of learning self-management of their condition during the camp. Rose's critical visual methodology framework was used for analysis. Results: Analysis of the data produced five categories: Normal versus altered childhood, living with lymphedema; perceptions of lymphedema and self-care in younger children; adolescents' perception of living and managing lymphedema; learning self-efficacy; and insights into cultural differences in self-care. Conclusions: The study has shown that self-management is complex. Children and adolescents face many daily challenges and frustrations in managing their condition in addition to the normal challenges of development and growth that impact on: home life, time with friends, school activities, and relationships. Children expressed a deep longing for cure and a recognition that their lives were altered by having the condition that led to limitations in sport and wearing fashionable clothes and shoes. The importance of relationships with professionals was critical as was the experience of meeting and learning with other children through the camp experience. Attempts to simplify self-management techniques would appear to be a key priority as would a greater understanding of the self-beliefs young people have of their ability to influence and control their condition and its impact on their life.

Prevalence and Risk Factors for Chronic Edema in U.K. Community Nursing Services.

Background and Study Design: Chronic edema (CO) is believed to be a major clinical problem within community nursing services in the United Kingdom. This study was undertaken as part of the LIMPRINT international study to determine the number of people with CO and its impact on health services. Methods and Results: Three urban-based community nursing services participated in the United Kingdom with prospective evaluation for 4 weeks of all patients receiving nursing care using a questionnaire-based interview and clinical assessment using the LIMPRINT tools. Of the total 2541 patients assessed, 1440 (56.7%) were considered to have CO, comprising Leicester City [768/1298 (59.2%)], Nottingham West [124/181 (68.5%)], and Nottingham City [548/1062 (51.6%)]. The mean age for women with CO was 78.6 (standard deviation [SD] 12.8) years and that for men with CO was 72.9 (SD 14.5). More patients with CO suffered from diabetes (32.1% vs. 27.9%, p = 0.027), heart failure/ischemic heart disease (27.3% vs. 14.0%, p < 0.001), and peripheral arterial occlusive disease (5.5% vs. 1.9%, p < 0.001). By far the greatest association was with the presence of a wound (73.6% vs. 37.9%, p < 0.001). Cellulitis affected 628 patients (24.7%) and 688 patients (47.8%) had a concurrent leg ulcer. Rates of reduced mobility (71.6% vs. 61.9%) and obesity were higher in those with CO. Six independent factors associated with CO were service location, age, ethnicity, obesity, heart failure, and the presence of a wound. Conclusion: CO is a major and growing health care problem within primary care that has been previously unrecognized and requires effective service provision.

A Study to Explore the Professional Conceptualization and Challenges of Self-Management in Children and Adolescents with Lymphedema.

Background: The aim of this study was to explore the professional experience of caring for children and adolescents with lymphedema and to explore the way in which they understand and implement self-management strategies and the influence of their own self-efficacy beliefs on this process. Methods and Results: Participants were recruited during an educational camp for children with lymphedema. Three individual semistructured focus groups were undertaken in English, French, and Italian with simultaneous translation. Data were analyzed using interpretative phenomenological analysis (IPA). Analysis of the data produced three superordinate themes: professional concepts of self-management, professional practice, and redefining the cornerstone of lymphedema care. An additional seven subthemes were as follows: readiness to self-management, professional perspectives on self-management, defining success and treatment failure, emotional burden, traditional views on complex decongestive therapy, new ways to practice, and sole practitioner versus multidisciplinary teams. Conclusions: The purpose of the study was to explore the challenges professionals face when introducing self-management to children and adolescents with lymphedema and their parents and to explore their own sense of self-efficacy in approaching this. The research allowed in-depth discussion about the ways they conceptualize self-management and faced professional challenges. The research highlighted the need to define what is considered an acceptable outcome within a complex and uncertain condition and the self-management strategies that are needed to support this.

LIMPRINT: A Sociological Perspective on "Chronic Edema".

Background: Chronic edema is a condition that is biologically complex, distressing for patients and sociopolitically weak. Like many other complex and chronic conditions, it has a low status within health care. The result is that it has a low priority in health policy and consequently is undervalued and undertreated. While evidence-based practice promotes a hierarchy of evidence, it is also the case that clinical practice is influenced by a hierarchy of social status. These are as much political as they are scientific. Methods and Results: This article will provide an explanation for why chronic edema is a low priority. It will do this through a critical review of the literature. We examine this through the theoretical lens of Pierre Bourdieu. The sociology of Bourdieu frames an understanding of power relations through habitus, field, and capital. We will employ these theoretical tools to understand the way that chronic edema is situated within the policy arena. We identify a number of social mechanisms that affect the status of chronic edema, including diagnostic uncertainty, social capital, scientific capital, cultural capital and economic capital. Conclusion: We argue that a whole system approach to care, based on human need rather than unequal power relations, is a prerequisite for the delivery of good health care. The specialty of chronic edema is not a powerless group and we identify some of the ways that the social mechanism that acts as barriers to change, can also be employed to challenge them.

A Study to Explore the Parental Impact and Challenges of Self-Management in Children and Adolescents Suffering with Lymphedema.

Background: Limited research has shown the impact lymphedema has on children and families. The aim of this study was to explore the parental experience of caring for a child or adolescent with lymphedema and the daily challenges of self-management and self-efficacy. Methods and Results: Participants were recruited during an educational camp for children with lymphedema (N = 26). Three individual semistructured focus groups were undertaken in English, French, and Italian with simultaneous translation. Data were analyzed using interpretative phenomenological analysis. Analysis identified four superordinate themes; the journey, treatment management, independence, and psychosocial impact. Ten subthemes were identified: bandaging/compression, professional support, holistic care, fear, self-efficacy, acceptance, friendship, guilt, distress, and hope. Conclusions: Parental self-management of children with lymphedema is complex and invades many aspects of life. Lack of professional agreement over what constitutes self-management leads to parental confusion and anxiety. Self-management is demanding, and parents are ambivalent to its effectiveness, but choose to persevere through fear of their child's condition deteriorating. Self-efficacy is evident in complex problem solving, despite parents believing that they are not adequately prepared for this.