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1.
Gynecol Oncol ; 165(3): 610-618, 2022 06.
Article in English | MEDLINE | ID: mdl-35351333

ABSTRACT

OBJECTIVE: Personalised care requires the identification of modifiable risk factors so that interventions can be implemented rapidly following a gynaecological cancer diagnosis. Our objective was to determine what pre-treatment factors are associated with quality of life (QOL) at baseline (pre-treatment) and 12 months. METHODS: 1222 women with a confirmed diagnosis of endometrial, ovarian, cervical or vulvar cancer from 82 UK NHS hospitals agreed to complete questionnaires at baseline, three and 12 months. Questionnaires included measures of QOL, health, lifestyle, support and self-management. The primary outcome measure was QOL as measured by Quality of Life in Adult Cancer Survivors (QLACS). Sites provided clinical data at baseline, six and 12 months. Linear regression models were constructed to examine the association between baseline characteristics and QOL outcomes. RESULTS: QOL declined between baseline and 3 months, followed by an improvement at 12 months. Baseline (pre-treatment) factors associated with worse QOL at both baseline and 12 months were depression, anxiety, living in a more deprived area and comorbidities which limit daily activities, whereas higher self-efficacy and age of 50+ years were associated with better QOL. CONCLUSIONS: Depression, anxiety and self-efficacy are modifiable risk factors that can impact on QOL. Screening for these, and assessment of whether comorbidities limit daily activities, should be incorporated in a holistic needs assessment and interventions to improve self-efficacy should be made available. Care can then be personalised from the outset to enable all women with a gynaecological cancer the opportunity to have the best QOL.


Subject(s)
Genital Neoplasms, Female , Quality of Life , Adult , Anxiety/etiology , Cohort Studies , Female , Genital Neoplasms, Female/diagnosis , Genital Neoplasms, Female/epidemiology , Genital Neoplasms, Female/therapy , Humans , Middle Aged , Surveys and Questionnaires , United Kingdom
2.
Support Care Cancer ; 30(6): 4823-4833, 2022 Jun.
Article in English | MEDLINE | ID: mdl-35147757

ABSTRACT

PURPOSE: Over half of individuals diagnosed with cancer are aged over 70 years, and more than 75% of those with cancer report at least one other medical condition. Having multiple conditions alongside cancer in old age may lower functional status, greater likelihood of treatment complications and less favourable prognoses. This qualitative study explored how older people with long-term chronic conditions manage their health and meet their health-related goals after they have completed treatment for cancer. METHODS: One-to-one face-to-face qualitative interviews were conducted with 8 older people and 2 informal caregivers based in the UK. Older adults were eligible to participate if they were over 70 and had completed primary cancer treatment with curative intent and had at least one other chronic health condition. A semi-structured interview schedule developed a priori based on Shippee's cumulative complexity model was used. We aimed to explore experiences that could influence self-management, utilisation of healthcare services and health outcomes. A framework analysis was used to describe and interpret the data. RESULTS: Four overarching themes were identified in the analysis. These themes related to factors that influenced the everyday health-related workload and capacity of the participants. These factors included their health, resources, and opportunities, as well their motivation and sense of perceived control over their lives. CONCLUSIONS: Fragmented healthcare systems and relationships with healthcare professionals also influenced the participants' self-management of their health. Our findings highlight the interaction between an individuals' needs, capacity, treatment burden, and the services and resources available to them. These findings support calls to promote person-centred care to better support older adults to manage their health.


Subject(s)
Neoplasms , Self-Management , Aged , Caregivers , Chronic Disease , Health Personnel , Humans , Multimorbidity , Neoplasms/therapy , Qualitative Research
3.
Am J Bot ; 108(7): 1112-1121, 2021 07.
Article in English | MEDLINE | ID: mdl-34263456

ABSTRACT

PREMISE: Cornales is an order of flowering plants containing ecologically and horticulturally important families, including Cornaceae (dogwoods) and Hydrangeaceae (hydrangeas), among others. While many relationships in Cornales are strongly supported by previous studies, some uncertainty remains with regards to the placement of Hydrostachyaceae and to relationships among families in Cornales and within Cornaceae. Here we analyzed hundreds of nuclear loci to test published phylogenetic hypotheses and estimated a robust species tree for Cornales. METHODS: Using the Angiosperms353 probe set and existing data sets, we generated phylogenomic data for 158 samples, representing all families in the Cornales, with intensive sampling in the Cornaceae. RESULTS: We curated an average of 312 genes per sample, constructed maximum likelihood gene trees, and inferred a species tree using the summary approach implemented in ASTRAL-III, a method statistically consistent with the multispecies coalescent model. CONCLUSIONS: The species tree we constructed generally shows high support values and a high degree of concordance among individual nuclear gene trees. Relationships among families are largely congruent with previous molecular studies, except for the placement of the nyssoids and the Grubbiaceae-Curtisiaceae clades. Furthermore, we were able to place Hydrostachyaceae within Cornales, and within Cornaceae, the monophyly of known morphogroups was well supported. However, patterns of gene tree discordance suggest potential ancient reticulation, gene flow, and/or ILS in the Hydrostachyaceae lineage and the early diversification of Cornus. Our findings reveal new insights into the diversification process across Cornales and demonstrate the utility of the Angiosperms353 probe set.


Subject(s)
Cornaceae , Magnoliopsida , Magnoliopsida/genetics , Phylogeny
4.
Psychooncology ; 29(10): 1452-1463, 2020 10.
Article in English | MEDLINE | ID: mdl-32596985

ABSTRACT

OBJECTIVE: Many older people with cancer live with multimorbidity. Little is understood about the cumulative impact of old age, cancer and multimorbidity on self-management. This qualitative systematic review and synthesis aimed to identify what influences self-management from the perspective of older adults living with cancer and multimorbidity. METHODS: Six databases were systematically searched for primary qualitative research reporting older adults' experiences of living with cancer and multimorbidity (eg, Medline, Embase, and CINAHL). A thematic synthesis was guided by Shippee's model of cumulative complexity. Text labelled as results in the included papers was treated as data. RESULTS: Twenty-eight studies were included. While the included studies varied in their focus, our analysis highlighted a number of important themes consistent across the studies. Health conditions with the greatest negative impact on independent living assumed the greatest importance, sometimes meaning their cancer was a low priority. Self-management practices seen as likely to interfere with quality of life were deprioritized unless viewed as necessary to maintain independence. When burden outweighed capacity, people were reluctant to ask for help from others in their social network. The contribution of formal healthcare services to supporting self-management was relatively peripheral. CONCLUSIONS: Old age and multimorbidity together may complicate self-management after cancer, threatening health and well-being, creating burden and diminishing capacity. Older adults prioritized self-management practices they considered most likely to enable them to continue to live independently. The protocol was registered with Prospero (CRD42018107272).


Subject(s)
Multimorbidity , Neoplasms/therapy , Quality of Life/psychology , Self-Management , Aged , Aged, 80 and over , Cost of Illness , Humans , Neoplasms/epidemiology , Neoplasms/psychology , Qualitative Research , Sickness Impact Profile , Social Support
5.
Psychooncology ; 27(10): 2427-2435, 2018 10.
Article in English | MEDLINE | ID: mdl-30070052

ABSTRACT

OBJECTIVE: More people are living with the consequences of cancer and comorbidity. We describe frequencies of comorbidities in a colorectal cancer cohort and associations with health and well-being outcomes up to 5 years following surgery. METHODS: Prospective cohort study of 872 colorectal cancer patients recruited 2010 to 2012 from 29 UK centres, awaiting curative intent surgery. Questionnaires administered at baseline (pre-surgery), 3, 9, 15, 24 months, and annually up to 5 years. Comorbidities (and whether they limit activities) were self-reported by participants from 3 months. The EORTC QLQ-C30 and QLQ-CR29 assessed global health/quality of life (QoL), symptoms, and functioning. Longitudinal analyses investigated associations between comorbidities and health and well-being outcomes. RESULTS: At baseline, the mean age of participants was 68 years, with 60% male and 65% colon cancer. Thirty-two per cent had 1 and 40% had ≥2 comorbidities. The most common comorbidities were high blood pressure (43%), arthritis/rheumatism (32%), and anxiety/depression (18%). Of those with comorbidities, 37% reported at least 1 that limited their daily activities. Reporting any limiting comorbidities was associated with poorer global health/QoL, worse symptoms, and poorer functioning on all domains over 5-year follow-up. Controlling for the most common individual comorbidities, depression/anxiety had the greatest deleterious effect on outcomes. CONCLUSIONS: Clinical assessment should prioritise patient-reported comorbidities and whether these comorbidities limit daily activities, as important determinants of recovery of QoL, symptoms, and functioning following colorectal cancer. Targeted interventions and support services, including multiprofessional management and tailored assessment and follow-up, may aid recovery of health and well-being in these individuals.


Subject(s)
Cancer Survivors/psychology , Colorectal Neoplasms/psychology , Depression/psychology , Quality of Life/psychology , Aged , Cohort Studies , Colorectal Neoplasms/complications , Colorectal Neoplasms/surgery , Comorbidity , Depression/etiology , Female , Humans , Male , Middle Aged , Prospective Studies , Social Support , Socioeconomic Factors , Surveys and Questionnaires , Time Factors
6.
J Sch Nurs ; 31(6): 411-21, 2015 Dec.
Article in English | MEDLINE | ID: mdl-26260135

ABSTRACT

The purpose of this study is to evaluate the preliminary efficacy of a dating violence (DV) prevention program for Cuban American adolescents (JOVEN/YOUTH: Juntos Opuestos a la Violence Entre Novios/Together Against Dating Violence). A randomized-controlled experimental design with a delayed condition was used to evaluate the effects on DV victimization and perpetration (N = 82). Self-administrated assessments were completed at baseline, 1 week, 3 months, and 12 months after the intervention to assess for psychological victimization and perpetration and physical and sexual victimization and perpetration. Effect sizes were estimated, and generalized estimating equations were generated to test intervention effects over time and potential gender interactions. The intervention had medium to strong effects on DV victimization and perpetration for male participants but not for females. However, intervention effects were not statistically significant over time. More research is needed to enhance intervention effects of JOVEN on DV outcomes and to evaluate these effects among a larger and more diverse sample.


Subject(s)
Adolescent Behavior/psychology , Hispanic or Latino/psychology , Intimate Partner Violence/prevention & control , Program Evaluation/methods , Adolescent , Crime Victims/psychology , Cuba/ethnology , Female , Follow-Up Studies , Humans , Intimate Partner Violence/psychology , Male , School Nursing , Sex Factors , United States
7.
Res Nurs Health ; 37(2): 117-27, 2014 Apr.
Article in English | MEDLINE | ID: mdl-24481848

ABSTRACT

The purpose of this study was to explore perceptions of dating relationships and teen dating violence prevention within a predominantly Cuban American community in Miami-Dade County. Eight focus groups (n = 74 participants) with adolescents of Hispanic origin (n = 29), their parents (n = 29), and school personnel (n = 16) were conducted and analyzed using content analysis. Four themes characterized the nature and context of dating relationships among adolescents of Hispanic origin: YOLO -You Only Live Once, cultural unity but social division, dating is not going out, and the social environment challenges healthy relationships. The information generated from this study can be used to develop culturally tailored teen dating violence prevention programs targeting youth of Hispanic origin.


Subject(s)
Attitude , Hispanic or Latino/psychology , Parents/psychology , Rape/prevention & control , Schools/organization & administration , Adolescent , Adult , Aged , Cuba/ethnology , Culture , Female , Focus Groups , Humans , Interpersonal Relations , Male , Middle Aged , Rape/psychology , Social Environment
8.
J Pediatr Nurs ; 29(6): 633-40, 2014.
Article in English | MEDLINE | ID: mdl-24680919

ABSTRACT

The purpose of this study is to describe the relationships among acculturation, risk behaviors, and reported physical dating violence among Cuban-American ninth grade adolescents. Participants (N=82) completed a questionnaire that assessed their level of acculturation to the U.S. (Americanism), their maintenance of the Hispanic culture (Hispanicism), binge drinking, drug use, sexual intercourse, condom use and physical dating violence victimization. Multiple logistic regression was conducted. Hispanicism was associated with a decrease in odds of reporting physical dating violence victimization. Drug use and not using a condom were associated with an increase in odds of reporting physical dating violence victimization.


Subject(s)
Acculturation , Hispanic or Latino , Risk-Taking , Violence/ethnology , Violence/statistics & numerical data , Adolescent , Condoms/statistics & numerical data , Cuba/ethnology , Female , Humans , Male , Sexual Behavior , Substance-Related Disorders/epidemiology , Surveys and Questionnaires , United States/epidemiology
9.
Pediatr Allergy Immunol ; 24(3): 288-92, 2013 May.
Article in English | MEDLINE | ID: mdl-23590419

ABSTRACT

BACKGROUND: The Paediatric Food Allergy Quality of Life Questionnaire (PFA-QL) was the first tool to be developed for assessing health-related quality of life (QoL) in children with food allergy. It has been used in a number of published studies, but has not been validated. OBJECTIVE: The aim of the current study was to validate child (PFA-QL) and parent-proxy (PFA-QL-PF) versions of the scale in a specialist allergy clinic and in parents of children with food allergy. METHODS: For the clinic sample, a generic QoL scale (PedsQL) and the PFA-QL were completed by 103 children (age 6-16 yrs) with peanut or tree nut allergy; test-retest reliability of the PFA-QL was tested in 50 stable patients. For the non-clinical sample, 756 parents of food allergic children completed the PFA-QL-PF, the Child Health Questionnaire (CHQ-PF50), Food Allergy Quality of Life Parental Burden Scale (FAQL-PB) and a Food Allergy Impact Measure. RESULTS: The PFA-QL and PFA-QL-PF had good internal consistency (α's of 0.77-0.82), and there was moderate-to-good agreement between the generic- and disease-specific questionnaires. The PFA-QL was stable over time in the clinic sample, and in both samples, girls were reported to have poorer QoL than boys. CONCLUSIONS: The PFA-QL and PFA-QL-PF are reliable and valid scales for use in both clinical and non-clinical populations. Unlike other available tools, they were developed and validated in the UK and thus provide a culture-specific choice for research, clinical trials and clinical practice in the UK. Validation in other countries is now needed.


Subject(s)
Nut Hypersensitivity/diagnosis , Nut Hypersensitivity/epidemiology , Surveys and Questionnaires , Adolescent , Allergens/immunology , Arachis/immunology , Child , Ethnicity , Female , Humans , Male , Nut Hypersensitivity/immunology , Parents , Quality of Life , Reproducibility of Results , United Kingdom
10.
Subst Use Misuse ; 48(9): 750-60, 2013 Jun.
Article in English | MEDLINE | ID: mdl-23607675

ABSTRACT

The present study of women with substance use disorders used grounded theory to examine women's experiences in both the Women's Recovery Group (WRG) and a mixed-gender Group Drug Counseling (GDC). Semi-structured interviews were completed in 2005 by 28 women in a U.S. metropolitan area. Compared to GDC, women in WRG more frequently endorsed feeling safe, embracing all aspects of one's self, having their needs met, feeling intimacy, empathy, and honesty. In addition, group cohesion and support allowed women to focus on gender-relevant topics supporting their recovery. These advantages of single-gender group therapy can increase treatment satisfaction and improve treatment outcomes.


Subject(s)
Psychotherapy, Group/methods , Substance-Related Disorders/psychology , Substance-Related Disorders/therapy , Women/psychology , Female , Humans , Patient Satisfaction , Qualitative Research , Sex Factors
11.
PLoS One ; 17(7): e0270033, 2022.
Article in English | MEDLINE | ID: mdl-35834525

ABSTRACT

OBJECTIVE: Colorectal cancer (CRC) is common in older adults, with more than 70% of diagnoses in people aged ≥65 years. Despite this, there is a knowledge gap regarding longer-term outcomes in this population. Here, we identify those older people most at risk of poor quality of life (QoL) and health status in the five years following CRC treatment. MATERIALS AND METHODS: CREW is a UK longitudinal cohort study investigating factors associated with health and wellbeing recovery following curative-intent CRC surgery. Participants completed self-report questionnaires pre-surgery, then at least annually up to five years. Longitudinal analyses explored the prevalence and pre-surgery risk factors of poor QoL (QLACS-GSS) and health status (EQ-5D: presence/absence of problems in five domains) in older (≥65 years) participants over five years. RESULTS: 501 participants aged ≥65years completed questionnaires pre-surgery; 45% completed questionnaires five years later. Oldest-old participants (≥80 years) reported poorer QoL (18% higher QLACS-GSS) and 2-4 times higher odds of having problems with mobility or usual activities, compared with the youngest-old (65-69 years) over follow-up. Baseline higher self-efficacy was significantly associated with better QoL (10-30% lower QLACS-GSS scores compared to those with low self-efficacy) and lower odds of problems in all EQ-5D domains. Adequate social support was significantly associated with better QoL (8% lower QLACS-GSS) and lower odds of problems with usual activities (OR = 0.62) and anxiety/depression (OR = 0.56). CONCLUSION: There are important differences in QoL and health status outcomes for the oldest-old during CRC recovery. CREW reveals pre-surgery risk factors that are amenable to intervention including self-efficacy and social support.


Subject(s)
Colorectal Neoplasms , Quality of Life , Aged , Aged, 80 and over , Cohort Studies , Colorectal Neoplasms/diagnosis , Colorectal Neoplasms/epidemiology , Colorectal Neoplasms/surgery , Health Status , Humans , Longitudinal Studies , Surveys and Questionnaires
12.
Pediatr Allergy Immunol ; 21(4 Pt 1): 586-94, 2010 Jun.
Article in English | MEDLINE | ID: mdl-20088863

ABSTRACT

Nut allergy is known to impact on the quality of life (QoL) and anxiety of both the allergic child and their parents, but little is known about how the management of food allergy is associated with these variables. To investigate the impact of nut allergy on QoL and anxiety in mothers and children with nut allergy in order to identify management strategies that may influence these factors. Forty-one nut allergic children (age 6-16 yrs) and their mothers completed questionnaires to assess maternal and children's QoL (PedsQL, WHOQOL-BREF, FAQL-PB), anxiety (SCAS, STAI) and perceived stress scale (PSS). Children also completed a nut allergy specific QoL questionnaire. Demographic data, details of previous reactions, test results and management plans were collected using parent-report questionnaires and hospital notes. Children with nut allergy had poorer emotional (p = 0.004), social (p = 0.043), and psychological (p = 0.006) QoL compared to healthy normative data. Maternal and child QoL and anxiety were not influenced by the severity of previous reactions. Mother and child reported lower anxiety (p = 0.043 and p < 0.001 respectively) when the child was prescribed an epinephrine auto-injector. Anxiety was not associated with whether the child carried the auto-injector or whether they strictly avoided traces of nuts in foods. Prescribing auto-injectors is associated with reduced anxiety for food allergic children and their mothers, but is not associated with improved adherence with medical management or reduced risk-taking behavior.


Subject(s)
Anxiety/etiology , Nut Hypersensitivity/psychology , Nut Hypersensitivity/therapy , Nuts/adverse effects , Quality of Life , Adolescent , Adult , Anxiety/prevention & control , Child , Epinephrine/therapeutic use , Feeding Behavior/psychology , Female , Humans , Male , Mothers , Nut Hypersensitivity/complications , Nut Hypersensitivity/physiopathology , Sex Factors
13.
PLoS One ; 15(10): e0240516, 2020.
Article in English | MEDLINE | ID: mdl-33064764

ABSTRACT

BACKGROUND: Older people are more likely to be living with cancer and multiple long-term conditions, but their needs, preferences for treatments, health priorities and lifestyle are often not identified or well-understood. There is a need to move towards a more comprehensive person-centred approach to care that focuses on the cumulative impact of a number of conditions on daily activities and quality of life. This paper describes the intervention planning process for CHAT& PLANTM, a structured conversation intervention to promote personalised care and support self-management in older adults with complex conditions. METHODS: A theory-, evidence- and person-based approach to intervention development was undertaken. The intervention planning and development process included reviewing relevant literature and existing guidelines, developing guiding principles, conducting a behavioural analysis and constructing a logic model. Optimisation of the intervention and its implementation involved qualitative interviews with older adults with multimorbidity (n = 8), family caregivers (n = 2) and healthcare professionals (HCPs) (n = 20). Data were analysed thematically and informed changes to the intervention prototype. RESULTS: Review findings reflected the importance of HCPs taking a person-centred (rather than disease-centred) approach to their work with older people living with multimorbidity. This approach involves HCPs giving health service users the opportunity to voice their priorities, then using these to underpin the treatment and care plan that follow. Findings from the planning stage indicated that taking a structured approach to interactions between HCPs and health service users would enable elicitation of individual concerns, development of a plan tailored to that individual, negotiation of roles and review of goals as individual priorities change. In the optimisation stage, older adults and HCPs commented on the idea of a structured conversation to promote person-centred care and on its feasibility in practice. The idea of a shared, person-centred approach to care was viewed positively. Concerns were raised about possible extra work for those receiving or delivering care, time and staffing, and risk of creating another "tick-box" exercise for staff. Participants concluded that anyone with the appropriate skills could potentially deliver the intervention, but training was likely to be required to ensure correct utilisation and self-efficacy to deliver to the intervention. CONCLUSIONS: CHAT&PLAN, a structured person-centred conversation guide appears acceptable and appealing to HCPs and older adults with multimorbidity. Further development of the CHAT&PLAN intervention should focus on ensuring that staff are adequately trained and supported to implement the intervention.


Subject(s)
Patient-Centered Care/methods , Quality of Life/psychology , Self-Management/methods , Aged , Aged, 80 and over , Caregivers , Evaluation Studies as Topic , Evidence-Based Practice , Female , Health Personnel , Humans , Interviews as Topic , Male , Multimorbidity , Physician-Patient Relations , Self-Management/psychology
14.
BMJ Open ; 9(2): e020515, 2019 02 05.
Article in English | MEDLINE | ID: mdl-30813114

ABSTRACT

OBJECTIVE: To identify, characterise and explain common and specific features of the experience of treatment burden in relation to patients living with lung cancer or chronic obstructive pulmonary disease (COPD) and their informal caregivers. DESIGN: Systematic review and interpretative synthesis of primary qualitative studies. Papers were analysed using constant comparison and directed qualitative content analysis. DATA SOURCES: CINAHL, EMBASE, MEDLINE, PsychINFO, Scopus and Web of Science searched from January 2006 to December 2015. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Primary qualitative studies in English where participants were patients with lung cancer or COPD and/or their informal caregivers, aged >18 years that contain descriptions of experiences of interacting with health or social care in Europe, North America and Australia. RESULTS: We identified 127 articles with 1769 patients and 491 informal caregivers. Patients, informal caregivers and healthcare professionals (HCPs) acknowledged lung cancer's existential threat. Managing treatment workload was a priority in this condition, characterised by a short illness trajectory. Treatment workload was generally well supported by an immediacy of access to healthcare systems and a clear treatment pathway. Conversely, patients, informal caregivers and HCPs typically did not recognise or understand COPD. Treatment workload was balanced with the demands of everyday life throughout a characteristically long illness trajectory. Consequently, treatment workload was complicated by difficulties of access to, and navigation of, healthcare systems, and a fragmented treatment pathway. In both conditions, patients' capacity to manage workload was enhanced by the support of family and friends, peers and HCPs and diminished by illness/smoking-related stigma and social isolation. CONCLUSION: This interpretative synthesis has affirmed significant differences in treatment workload between lung cancer and COPD. It has demonstrated the importance of the capacity patients have to manage their workload in both conditions. This suggests a workload which exceeds capacity may be a primary driver of treatment burden. PROSPERO REGISTRATION NUMBER: CRD42016048191.


Subject(s)
Caregivers/psychology , Cost of Illness , Lung Neoplasms/psychology , Pulmonary Disease, Chronic Obstructive/psychology , Humans , Qualitative Research
15.
BMJ Open ; 8(8): e022021, 2018 08 17.
Article in English | MEDLINE | ID: mdl-30121604

ABSTRACT

AIM: To describe how decision making inter-relates with the sequence of events in individuals who die during admission and identify situations where formal treatment escalation plans (TEPs) may have utility. DESIGN AND METHODS: A retrospective case note review using stratified sampling. Two data analysis methods were applied concurrently: directed content analysis and care management process mapping via annotated timelines for each case. Analysis was followed by expert clinician review (n=7), contributing to data interpretation. SAMPLE: 45 cases, age range 38-96 years, 23 females and 22 males. Length of admission ranged from <24 hours to 97 days. RESULTS: Process mapping led to a typology of care management, encompassing four trajectories: early de-escalation due to catastrophic event; treatment with curative intent throughout; treatment with curative intent until significant point; and early treatment limits set. Directed content analysis revealed a number of contextual issues influencing decision making. Three categories were identified: multiple clinician involvement, family involvement and lack of planning clarity; all framed by clinical complexity and uncertainty. CONCLUSIONS: The review highlighted the complex care management and related decision-making processes for individuals who face acute deterioration. These processes involved multiple clinicians, from numerous specialities, often within hierarchical teams. The review identified the need for visible and clear management plans, in spite of the frame of clinical uncertainty. Formal TEPs can be used to convey such a set of plans. Opportunities need to be created for patients and their families to request TEPs, in consultation with the clinicians who know them best, outside of the traumatic circumstances of acute deterioration.


Subject(s)
Clinical Decision-Making , Clinical Deterioration , Hospitalization , Adult , Aged , Aged, 80 and over , Clinical Audit , Death , Family , Female , Humans , Male , Middle Aged , Retrospective Studies , Uncertainty , United Kingdom
16.
BMJ Open ; 8(9): e023507, 2018 09 04.
Article in English | MEDLINE | ID: mdl-30181188

ABSTRACT

INTRODUCTION: Chronic kidney disease (CKD) requires patients and caregivers to invest in self-care and self-management of their disease. We aimed to describe the work for adult patients that follows from these investments and develop an understanding of burden of treatment (BoT). METHODS: Systematic review of qualitative primary studies that builds on EXPERTS1 Protocol, PROSPERO registration number: CRD42014014547. We included research published in English, Spanish and Portuguese, from 2000 to present, describing experience of illness and healthcare of people with CKD and caregivers. Searches were conducted in MEDLINE, Embase, CINAHL Plus, PsycINFO, Scopus, Scientific Electronic Library Online and Red de Revistas Científicas de América Latina y el Caribe, España y Portugal. Content was analysed with theoretical framework using middle-range theories. RESULTS: Searches resulted in 260 studies from 30 countries (5115 patients and 1071 carers). Socioeconomic status was central to the experience of CKD, especially in its advanced stages when renal replacement treatment is necessary. Unfunded healthcare was fragmented and of indeterminate duration, with patients often depending on emergency care. Treatment could lead to unemployment, and in turn, to uninsurance or underinsurance. Patients feared catastrophic events because of diminished financial capacity and made strenuous efforts to prevent them. Transportation to and from haemodialysis centre, with variable availability and cost, was a common problem, aggravated for patients in non-urban areas, or with young children, and low resources. Additional work for those uninsured or underinsured included fund-raising. Transplanted patients needed to manage finances and responsibilities in an uncertain context. Information on the disease, treatment options and immunosuppressants side effects was a widespread problem. CONCLUSIONS: Being a person with end-stage kidney disease always implied high burden, time-consuming, invasive and exhausting tasks, impacting on all aspects of patients' and caregivers' lives. Further research on BoT could inform healthcare professionals and policy makers about factors that shape patients' trajectories and contribute towards a better illness experience for those living with CKD. PROSPERO REGISTRATION NUMBER: CRD42014014547.


Subject(s)
Cost of Illness , Renal Insufficiency, Chronic , Self Care , Self-Management , Adult , Humans , Renal Insufficiency, Chronic/economics , Renal Insufficiency, Chronic/psychology , Renal Insufficiency, Chronic/therapy , Renal Replacement Therapy/economics , Renal Replacement Therapy/methods , Self Care/economics , Self Care/methods , Self-Management/economics , Self-Management/methods , Socioeconomic Factors
17.
Implement Sci ; 13(1): 80, 2018 06 07.
Article in English | MEDLINE | ID: mdl-29879986

ABSTRACT

BACKGROUND: Normalization Process Theory (NPT) identifies, characterises and explains key mechanisms that promote and inhibit the implementation, embedding and integration of new health techniques, technologies and other complex interventions. A large body of literature that employs NPT to inform feasibility studies and process evaluations of complex healthcare interventions has now emerged. The aims of this review were to review this literature; to identify and characterise the uses and limits of NPT in research on the implementation and integration of healthcare interventions; and to explore NPT's contribution to understanding the dynamics of these processes. METHODS: A qualitative systematic review was conducted. We searched Web of Science, Scopus and Google Scholar for articles with empirical data in peer-reviewed journals that cited either key papers presenting and developing NPT, or the NPT Online Toolkit ( www.normalizationprocess.org ). We included in the review only articles that used NPT as the primary approach to collection, analysis or reporting of data in studies of the implementation of healthcare techniques, technologies or other interventions. A structured data extraction instrument was used, and data were analysed qualitatively. RESULTS: Searches revealed 3322 citations. We show that after eliminating 2337 duplicates and broken or junk URLs, 985 were screened as titles and abstracts. Of these, 101 were excluded because they did not fit the inclusion criteria for the review. This left 884 articles for full-text screening. Of these, 754 did not fit the inclusion criteria for the review. This left 130 papers presenting results from 108 identifiable studies to be included in the review. NPT appears to provide researchers and practitioners with a conceptual vocabulary for rigorous studies of implementation processes. It identifies, characterises and explains empirically identifiable mechanisms that motivate and shape implementation processes. Taken together, these mean that analyses using NPT can effectively assist in the explanation of the success or failure of specific implementation projects. Ten percent of papers included critiques of some aspect of NPT, with those that did mainly focusing on its terminology. However, two studies critiqued NPT emphasis on agency, and one study critiqued NPT for its normative focus. CONCLUSIONS: This review demonstrates that researchers found NPT useful and applied it across a wide range of interventions. It has been effectively used to aid intervention development and implementation planning as well as evaluating and understanding implementation processes themselves. In particular, NPT appears to have offered a valuable set of conceptual tools to aid understanding of implementation as a dynamic process.


Subject(s)
Delivery of Health Care , Models, Theoretical , Process Assessment, Health Care , Systems Theory , Adolescent , Australia , Child , Feasibility Studies , Female , Humans , Pregnancy
18.
BMJ Open ; 7(10): e017056, 2017 10 06.
Article in English | MEDLINE | ID: mdl-28988176

ABSTRACT

OBJECTIVES: To identify the factors that promote and inhibit the implementation of interventions that improve communication and decision-making directed at goals of care in the event of acute clinical deterioration. DESIGN AND METHODS: A scoping review was undertaken based on the methodological framework of Arksey and O'Malley for conducting this type of review. Searches were carried out in Medline and Cumulative Index to Nursing and Allied Health Literature (CINAHL) to identify peer-reviewed papers and in Google to identify grey literature. Searches were limited to those published in the English language from 2000 onwards. Inclusion and exclusion criteria were applied, and only papers that had a specific focus on implementation in practice were selected. Data extracted were treated as qualitative and subjected to directed content analysis. A theory-informed coding framework using Normalisation Process Theory (NPT) was applied to characterise and explain implementation processes. RESULTS: Searches identified 2619 citations, 43 of which met the inclusion criteria. Analysis generated six themes fundamental to successful implementation of goals of care interventions: (1) input into development; (2) key clinical proponents; (3) training and education; (4) intervention workability and functionality; (5) setting and context; and (6) perceived value and appraisal. CONCLUSIONS: A broad and diverse literature focusing on implementation of goals of care interventions was identified. Our review recognised these interventions as both complex and contentious in nature, making their incorporation into routine clinical practice dependent on a number of factors. Implementing such interventions presents challenges at individual, organisational and systems levels, which make them difficult to introduce and embed. We have identified a series of factors that influence successful implementation and our analysis has distilled key learning points, conceptualised as a set of propositions, we consider relevant to implementing other complex and contentious interventions.


Subject(s)
Communication , Decision Making , Emergency Medical Services/standards , Patient Care Planning , Quality Improvement , Humans , Resuscitation
19.
BMJ Open ; 6(10): e011694, 2016 10 05.
Article in English | MEDLINE | ID: mdl-27707824

ABSTRACT

OBJECTIVES: To summarise and synthesise published qualitative studies to characterise factors that shape patient and caregiver experiences of chronic heart failure (CHF), chronic obstructive pulmonary disease (COPD) and chronic kidney disease (CKD). DESIGN: Meta-review of qualitative systematic reviews and metasyntheses. Papers analysed using content analysis. DATA SOURCES: CINAHL, EMBASE, MEDLINE, PsychINFO, Scopus and Web of Science were searched from January 2000 to April 2015. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Systematic reviews and qualitative metasyntheses where the participants were patients, caregivers and which described experiences of care for CHF, COPD and CKD in primary and secondary care who were aged ≥18 years. RESULTS: Searches identified 5420 articles, 53 of which met inclusion criteria. Reviews showed that patients' and caregivers' help seeking and decision-making were shaped by their degree of structural advantage (socioeconomic status, spatial location, health service quality); their degree of interactional advantage (cognitive advantage, affective state and interaction quality) and their degree of structural resilience (adaptation to adversity, competence in managing care and caregiver response to demands). CONCLUSIONS: To the best of our knowledge, this is the first synthesis of qualitative systematic reviews in the field. An important outcome of this overview is an emphasis on what patients and caregivers value and on attributes of healthcare systems, relationships and practices that affect the distressing effects and consequences of pathophysiological deterioration in CHF, COPD and CKD. Interventions that seek to empower individual patients may have limited effectiveness for those who are most affected by the combined weight of structural, relational and practical disadvantage identified in this overview. We identify potential targets for interventions that could address these disadvantages. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO CRD42014014547.


Subject(s)
Caregivers/psychology , Chronic Disease/psychology , Heart Failure/psychology , Pulmonary Disease, Chronic Obstructive/psychology , Renal Insufficiency, Chronic/psychology , Decision Making , Health Behavior , Health Services Accessibility/standards , Humans , Meta-Analysis as Topic , Qualitative Research , Resilience, Psychological , Socioeconomic Factors , Systematic Reviews as Topic
20.
Psychiatr Rehabil J ; 38(1): 55-64, 2015 Mar.
Article in English | MEDLINE | ID: mdl-25799306

ABSTRACT

OBJECTIVE: The purpose of this randomized trial was to investigate the efficacy of 2 behavioral treatments focusing on different change mechanisms in ameliorating a borderline personality disorder constellation of behaviors and substance use in adolescents referred by juvenile diversion programs. METHODS: Forty adolescents 14-17 years of age and meeting Diagnostic and Statistical Manual of Mental Disorders (4th ed.) criteria for borderline personality disorder and substance use disorders were randomized to integrative borderline personality disorder-oriented adolescent family therapy (I-BAFT) or individual drug counseling. This design allowed a comparison of 2 manualized interventions, 1 family based and 1 individually oriented. Profiles of clinical change were used to detect impact and estimate treatment effect sizes. RESULTS: Primary analyses showed that both interventions had a clinically significant impact on borderline personality disorder behaviors 12 months after baseline but with no differential treatment effects. The impact on substance use was more complex. Subgroup analyses revealed that adolescents with depression had significantly more severe profiles of borderline personality disorder and substance use. These youths were the only group to show reductions in substance use, but they only did so if they received the I-BAFT intervention. Study data also documented the high dosage of intensive residential treatment needed by this population. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Results highlight the intensive treatment needs of juvenile justice-involved youths with co-occurring substance use and borderline personality disorder including depression, the hybrid outpatient and residential treatment often required by this population, and the promise of a family-oriented approach, particularly for youths with severe symptoms and co-occurring depression. (PsycINFO Database Record


Subject(s)
Behavior Therapy/methods , Borderline Personality Disorder/rehabilitation , Depressive Disorder/rehabilitation , Family Therapy/methods , Juvenile Delinquency , Substance-Related Disorders/rehabilitation , Adolescent , Borderline Personality Disorder/epidemiology , Borderline Personality Disorder/psychology , Depressive Disorder/epidemiology , Depressive Disorder/psychology , Female , Humans , Male , Substance-Related Disorders/epidemiology , Substance-Related Disorders/psychology , Treatment Outcome
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