| 1. |
- Johnston, Bridget, et al.
(författare)
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An evaluation of the use of Telehealth within palliative care settings across Scotland
- 2012
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 26:2, s. 152-161
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Tidskriftsartikel (refereegranskat)abstract
- There is a lack of evidence-based research in the use of Telehealth within palliative care in the UK, particularly in Scotland. The aim of this project was to evaluate the current use of Telehealth applications within palliative care across Scotland, and how these and future applications are perceived by patients, carers and professionals. This paper reports on the qualitative findings from focus groups with patients and carers in three geographical areas in Scotland, and individual interviews with key stakeholders from across Scotland, who currently work within areas of high and low Telehealth activity. The key findings indicated that Telehealth initiatives are welcomed by patients and carers but that these should be an adjunct to clinical care rather than an alternative. The stakeholder interviews revealed several notable differences between those working within areas of high and low Telehealth activity. Principally, areas of high Telehealth activity appear to be driven by national and local policy and seem to benefit from a greater level of investment in Telehealth equipment and facilities than in the more central, and hence accessible, parts of Scotland.
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| 2. |
- Kearney, Nora, et al.
(författare)
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WISECARE plus : results of a European study of a nursing intervention for the management of chemotherapy-related symptoms
- 2008
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 12:5, s. 443-448
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Tidskriftsartikel (refereegranskat)abstract
- While the use of chemotherapy has significantly improved survival rates, the symptoms associated with chemotherapy remain a major burden for patients. Preventing or appropriately managing side effects significantly improves patients' functional status and quality of life, ultimately leading to greater patient acceptance of chemotherapy. However, symptom assessment and management are fraught with difficulties such as poor patient recall, retrospective assessment conducted by clinicians and lack of appropriate, clinically relevant and patient friendly symptom assessment and management tools. Furthermore the differences between clinician and patient perceptions of stresses and distress during chemotherapy are well recognised. This study aimed to evaluate the impact of a nursing intervention incorporating structured symptom assessment and management, facilitated by information technology, on chemotherapy-related symptoms, nausea, vomiting, fatigue and mucositis. This pan-European study, involved 8 clinical sites from Belgium, Denmark, England, Ireland and Scotland. Adults (n = 249) receiving first line chemotherapy for breast, lung, ovarian or colorectal cancer, osteosarcoma, acute myeloid leukaemia (AML), acute lymphoblastic leukaemia (ALL) or lymphoma were recruited to the study. Patients completed daily symptom assessment questionnaires for 14 days following consecutive cycles of chemotherapy. Symptom outcomes were compared before and after the introduction of the intervention with positive impact on patients' experiences of nausea, vomiting and oral problems. Fatigue was not significantly improved. (C) 2008 Elsevier Ltd. All rights reserved.
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| 3. |
- Kotronoulas, Grigorios, et al.
(författare)
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A critical review of women's sleep-wake patterns in the context of neo-/adjuvant chemotherapy for early-stage breast cancer
- 2012
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Ingår i: Breast. - : Elsevier BV. - 0960-9776 .- 1532-3080. ; 21:2, s. 128-141
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Forskningsöversikt (refereegranskat)abstract
- Complaints of poor nocturnal sleep and daytime dysfunction may be frequent among women receiving chemotherapy for breast cancer. A critical review of the literature was conducted, which aimed at summarising and critically analysing findings regarding sleep in women with early-stage breast cancer across neo-/adjuvant chemotherapy treatment. A systematic search of three electronic databases (Medline, CINAHL, EMBASE) was conducted from January 1980 to July 2011. Twenty-one articles reporting on 12 studies were included for analysis based on pre-specified selection criteria. Varying deficits in sleep parameters may be evident in a significant part of this population. Yet, research data are not equally distributed among the different sleep components, or across all major time points throughout chemotherapy. More systematic investigation of the experience of disrupted sleep in this population with longitudinal mixed-methods studies is warranted to ensure that person-tailored and clinically meaningful care is delivered. (C) 2011 Elsevier Ltd. All rights reserved.
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| 4. |
- Kotronoulas, Grigorios, et al.
(författare)
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Dyadic sleep/wake assessments in cancer care : new insight from a longitudinal study among women with breast cancer and their informal caregivers during adjuvant chemotherapy
- 2013
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Ingår i: European Journal of Cancer. - 0959-8049 .- 1879-0852. ; 49, s. S379-S380
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Tidskriftsartikel (refereegranskat)abstract
- Background: Alterations in habitual sleep/wake patterns (SWP) of women with breast cancer and their informal caregivers may be concurrently exacerbated and co-vary during the patient’s treatment. Taking into consideration the complexity of mechanisms interfering with a care dyad’s sleep, the current study set out to longitudinally explore SWP of patientcaregiver dyads in the context of adjuvant chemotherapy (CTh) for breast cancer.Material and Methods: In this descriptive, observational, repeatedmeasures dyadic study, 48 newly diagnosed women receiving outpatient adjuvant CTh for early stage breast cancer (stage I−IIIA), and their nominated primary informal caregiver completed self-reported sleep measures at pre-treatment (week prior to CTh), post-CTh cycle 1, post- CTh cycle 4, and approximately 30 days after CTh (total of 6 cycles received). Multivariate hierarchical linear modelling (MHLM) techniques were implemented to analyse dyadic sleep data.Results: Prior to CTh, 65% of dyads consisted of at least one poor sleeper, a rate further increasing to approximately 88% at CThC4. MHLM revealed curvilinear trajectories for most of dyads’ sleep/wake parameters that nevertheless reached significance (p <. 05) only for patients. In both groups, sleep/wake impairment reached its peak at mid-treatment (CThC4); yet, patients consistently reported significantly more sleep problems than their carers. Partial convergence also emerged as suggested by positive correlations and no between-groups differences in daily disturbance, daytime napping duration (NAPTIME), total sleep time, and overall sleep/ wake disruption at pre-treatment. At CThC4, rates of change in sleep latency and NAPTIME were alsosimilar.Conclusions: The current study is one of the first studies to show that a dyadic approach in the assessment of SWP in patients with breast cancer and their carers is a promising method to enhance exploration of potentially concurrent sleep-impairment. Replication of the current findings in future dyadic sleep research is an absolute priority. Meanwhile, clinicians will need to engage in concurrent systematic and on-going sleep assessments that synthesise and contrast data to establish a care dyad’s level of sleep quality.
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| 5. |
- Kotronoulas, Grigorios, et al.
(författare)
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Informal carers : A focus on the real caregivers of people with cancer
- 2012
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Ingår i: Forum of Clinical Oncology. - : Hellenic Society of Medical Oncology. - 1792-345X .- 1792-362X. ; 3:3, s. 58-65
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Tidskriftsartikel (refereegranskat)abstract
- Background: Those who become active caregivers out of their simple need to be included in their loved ones' experience may act as a force in the support and sustenance of the person with cancer. Apart from family members, individuals "considered as family" by the patient may actively participate in the patient's cancer journey. The purpose of this clinical review is to raise clinician awareness on the multiple responsibilities assumed and the impact of active caregiving experienced by informal carers of patients with cancer, also offering a number of practical suggestions to promote person-centred support. Patients & Methods: An electronic search for original and review articles published between January 1990 and July 2011 in three research and evidence databases (MedLine, CINAHL, EMBASE) was carried out using the terms "caregiver" and "cancer". Results: Informal caregivers are often required to assume numerous roles and make changes in their lives until they find themselves striving to balance a host of responsibilities. By being practically and emotionally involved, however, caregivers' own lives can be affected, sometimes overwhelmingly. The physical, emotional, social, and financial stress that caregivers can face in this role may result in the neglect of their own needs, adversely affecting their quality of life. Conclusions: Research-driven support interventions such as peer support groups or psychological/emotional therapy, as well as honest, open and personalised communication with health care professionals and ongoing assessment of their needs can be of utmost importance in supporting those who contribute the most to the patients' cancer journey.
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| 6. |
- Kotronoulas, Grigorios, et al.
(författare)
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Sleep and sleep-wake disturbances in care recipient-caregiver dyads in the context of a chronic illness : a critical review of the literature
- 2013
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 45:3, s. 579-594
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Forskningsöversikt (refereegranskat)abstract
- Context. Alterations in sleep-wake patterns of care recipients and their informal caregivers are common in the context of a chronic illness. Given the current notion that sleep may be regulated within and affected by close human relationships, concurrent and interrelated sleep problems may be present in care recipient-caregiver dyads. Objectives. To critically analyze evidence regarding concurrent sleep patterns or changes in care recipient-caregiver dyads in the context of a chronic illness and address methodological and research gaps. Methods. Using a wide range of key terms and synonyms, three electronic databases (Medline, CINAHL, and Embase) were systematically searched for the period between January 1990 and July 2011. Results. Ten studies met prespecified selection criteria and were included for analysis. Study quality was fair to good on average. Seven studies were conducted in the context of dementia or Parkinson's disease, two in the context of cancer, and one study included a group of community elders with mixed related comorbidities and their informal caregivers. Bidirectional associations in the sleep of care recipient-caregiver dyads seem to exist. Concurrent and comparable nocturnal sleep disruptions also may be evident. Yet, inconsistencies in the methods implemented, and the samples included, as well as uncertainty regarding factors coaffecting sleep, still preclude safe conclusions to be drawn on. Conclusion. The dyadic investigation of sleep is a promising approach to the development of truly effective interventions to improve sleep quality of care recipients and their caregivers. Nevertheless, more systematic, longitudinal dyadic research is warranted to augment our understanding of co-occurrence and over time changes of sleep problems in care recipient-caregiver dyads, as well as to clarify covariates/factors that appear to contribute to these problems within the dyad and across time and context of illness. J Pain Symptom Manage 2013;45:579-594. (C) 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
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| 7. |
- Kotronoulas, Grigorios, et al.
(författare)
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Sleep-wake disturbances in patients with cancer and their informal caregivers : A matter of dyads
- 2012
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Ingår i: Forum of Clinical Oncology. - : Hellenic Society of Medical Oncology. - 1792-345X .- 1792-362X. ; 3:1, s. 32-40
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Tidskriftsartikel (refereegranskat)abstract
- Background: Changes in habitual sleep are among the most remarkable and important concerns of both patients with cancer and their informal carers. A dyadic approach in the assessment and management of sleep problems in patients and carers is a promising method of exploring concurrent sleep disturbances and establishing associations between sleep and sleep-impairing factors that may co-vary in the members of the dyad. The purpose of the present mini-review article was to discuss the current evidence, as well as highlight areas where future research is warranted. Patients & Methods: An electronic search for original peer-reviewed articles published between January 1990 and July 2011 in three research and evidence databases (MedLine, CINAHL, EMBASE) was carried out using a wide range of keywords and free-text terms. Cancer care-related evidence was complemented by additional data derived from studies conducted with married couples or in the context of other chronic illnesses. Results: Concurrent and comparable nocturnal sleep disruptions might be evident, where poor sleep quality, decreased sleep duration, and multiple awakenings may correlate with each other within the dyad. Care recipients' and caregivers' night and day rest patterns can be synchronised, as caregivers organise their sleep around the patient. Conclusion: More systematic, dyadic research is warranted to enhance development of intervention protocols for the comprehensive management of sleep disorders in this population throughout the illness experience. These interventions will ensure that sleep patterns are assessed in depth and are managed in a concurrent manner to achieve a concurrent increased level of well-being of patient-caregiver dyads.
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| 8. |
- Kotronoulas, Grigorios, et al.
(författare)
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Sleep patterns and sleep-impairing factors of persons providing informal care for people with cancer : a critical review of the literature
- 2013
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Ingår i: Cancer Nursing. - 0162-220X .- 1538-9804. ; 36:1, s. E1-E15
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Forskningsöversikt (refereegranskat)abstract
- Background: Sleep is increasingly recognized as an area of functioning that may be greatly affected in persons who are practically and emotionally involved in the care of patients with cancer. Clinician awareness is required to ensure that effective care for informal caregivers with sleep problems is provided. Objective: A 2-fold critical review of the published literature was conducted, which aimed at summarizing and critically analyzing evidence regarding sleep patterns of informal caregivers of adults with cancer and contributing factors to sleep-wake disturbances. Methods: Using a wide range of key terms and synonyms, 3 electronic databases (MEDLINE, CINAHL, EMBASE) were systematically searched for the period between January 1990 and July 2011. Results: Based on prespecified selection criteria, 44 articles were pooled to provide evidence on sleep-impairing factors in the context of informal caregiving, 17 of which specifically addressed sleep patterns of caregivers of people with cancer. Conclusions: At least 4 of 10 caregivers may report at least 1 sleep problem. Short sleep duration, nocturnal awakenings, wakefulness after sleep onset, and daytime dysfunction seem to be the areas most affected irrespective of stage or type of disease, yet circadian activity remains understudied. In addition, despite a wide spectrum of potential sleep-impairing factors, underlying causal pathways are yet to be explored. Implications for Practice: More longitudinal, mixed-methods, and comparison studies are warranted to explore caregiver sleep disorders in relation to the gravity of the caregiving situation in the context of diverse types of cancer and disease severity.
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| 9. |
- McCann, Lisa, et al.
(författare)
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"It's just going to a new hospital ... That's It." Or is it? : An experiential perspective on moving from pediatric to adult cancer services
- 2014
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Ingår i: Cancer Nursing. - Philadelphia, USA : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 37:5, s. E23-E31
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Tidskriftsartikel (refereegranskat)abstract
- Background: Survivors of childhood cancer will, at some stage, move from pediatric to adult care and/or to a different model of care to continue to receive long-term follow-up. Literature relating to transitional care for childhood onset conditions exists, but little research has been undertaken into transition in a cancer context, specifically from an experiences perspective.Objective: The aim of this study was to report how the process of transition should be considered within the context of young people's entire illness experience and how that experience can impact their transition readiness.Intervention/Methods: A qualitative, collective case study approach was adopted. Semistructured interviews were conducted with young people, parents, and healthcare professionals. Young people's oncology case notes were also reviewed. RESULTS:: Data analysis generated a multidimensional and multiple-perspective understanding of the experience of the process of transition. A central orienting theme was identified: the experience of readiness in the context of transition.Conclusion: Understanding the multifaceted components of readiness is crucial; readiness should embody people's illness experiences, the numerous and associated losses intertwined with a move from pediatric to adult care, and the simultaneous developmental changes occurring in people's lives.Implications for practice: The findings provide a meaningful framework to understand the experience of transition from the perspective of young people, parents, and healthcare professionals. These findings could help with the planning and preparation of individualized transitional care pathways for survivors of childhood cancer.
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| 10. |
- McCann, Lisa, et al.
(författare)
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Transition or transfer? : an experiential perspective on moving from paediatric to adult cancer services
- 2012
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Ingår i: Pediatric Blood & Cancer. - : Wiley. - 1545-5009 .- 1545-5017. ; 59:6, s. 1120-1120
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To explore the experiences of young adult survivors of childhood cancer, their parents, health care professionals and case noteevidence of the process of transition from paediatric to adult cancer services.Methods: A qualitative case study, with 12 cases recruited. Audio recorded, individual, semistructured interviews were conducted to explore experiences of transition with young people, parents and health care professionals. Young people: 7 males and 5 females aged between 17 and 25 and who were survivors of childhood cancer were interviewed; Parents: 11 mothers and 1 father were nominated and interviewed; Health care professionals: 11 health care professional interviews were conducted. Also, young people’s case notes from both the paediatric and adult sector, where available, were subjected to a case note review for further evidence relating to their transition experience. In total, 22 sets of case notes were reviewed.Results: The findings from this study provide a detailed, triangulated multi-perspective and multi-layered depiction of the transition experience of young people, parents, and health care professionals, explained by an orienting theme, ‘The experience of readiness in the context of transition’. This readiness was considered multi-dimensional in nature and was supported by means of three main themes, as derived from the interview and case note data in this study.
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