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- Hagström, Josefin, et al.
(author)
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Opt-out rates and reasons for non-participation in a single-arm feasibility trial (ENGAGE) of a guided internet-administered CBT-based intervention for parents of children treated for cancer : A nested cross-sectional survey
- 2022
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In: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 12:4
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Journal article (peer-reviewed)abstract
- Objectives Difficulties with recruitment into clinical trials are common. An opt-out recruitment strategy, whereby potential participants can decline further contact about a study (opt-out), and non-responders are contacted, may facilitate participation. Primary objectives examined opt-out and consent rates, mode and time point of opt-out, and sociodemographic characteristics of those who opted out versus those who chose to participate in a single-arm feasibility trial (ENGAGE) of a guided, internet-administered, cognitive–behavioural therapy-based intervention for parents of children treated for cancer. Secondary objectives examined reasons for non-participation.Design A cross-sectional survey nested within theENGAGE feasibility trial.Setting The intervention was delivered from Uppsala University, with parents located throughout Sweden.Participants Potential participants were recruited 3 months–5 years following their child ending treatment for cancer and were identified via their personal identification number (via the Swedish Childhood Cancer Registry and Swedish Tax Agency) and invited via postal invitation packs and could opt out via post, online, telephone or email. Those who did not opt out or consent, within 4 weeks, received up to five telephone calls and/or one postal reminder.Results Of 509 invited, 164 (32.2%) opted out, 78 (47.6%) via post, 53 (32.3%) via telephone, 24 (14.6%) online, and 6 (3.7%) via email, 88 (53.7%) opted out after at least one telephone call and/or postal reminder. There was a trend for parents with lower educational levels to opt out. No need of psychological support, lack of time, and no interest in internet-administered self-help were frequently reported reasons for non-participation.Conclusions Results emphasise the importance of using different opt-out modes and suggest future research should consider how to widen study participation for parents with lower education levels. Self-identifying a need for psychological support and the acceptability of internet-administered self-help are important factors for participation and should be considered in future research to increase recruitment.
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| 2. |
- Kamsvåg, Tove, 1986-, et al.
(author)
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Prevention of oral mucositis with cryotherapy in children undergoing hematopoietic stem cell transplantations-a feasibility study and randomized controlled trial
- 2020
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In: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339.
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Journal article (peer-reviewed)abstract
- Purpose To evaluate the feasibility of oral cryotherapy (OC) in children and to investigate if OC reduces the incidence of severe oral mucositis (OM), oral pain, and opioid use in children undergoing hematopoietic stem cell transplantation (HSCT). Methods Fifty-three children, 4-17 years old, scheduled for HSCT in Sweden were included and randomized to OC or control using a computer-generated list. OC instructions were to cool the mouth with ice for as long as possible during chemotherapy infusions with an intended time of >= 30 min. Feasibility criteria in the OC group were as follows: (1) compliance >= 70%; (2) considerable discomfort during OC < 20%; (3) no serious adverse events; and (4) ice administered to all children. Grade of OM and oral pain was recorded daily using the WHO-Oral Toxicity Scale (WHO-OTS), Children's International Oral Mucositis Evaluation Scale, and Numerical Rating Scale. Use of opioids was collected from the medical records. Results Forty-nine children (mean age 10.5 years) were included in analysis (OC = 26, control = 23). The feasibility criteria were not met. Compliance was poor, especially for the younger children, and only 15 children (58%) used OC as instructed. Severe OM (WHO-OTS >= 3) was recorded in 26 children (OC = 15, control = 11). OC did not reduce the incidence of severe OM, oral pain, or opioid use. Conclusion The feasibility criteria were not met, and the RCT could not show that OC reduces the incidence of severe OM, oral pain, or opioid use in pediatric patients treated with a variety of conditioning regimens for HSCT.
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| 3. |
- Haglund, Kristina, et al.
(author)
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Forced medication in psychiatric care : patient experiences and nurse perceptions
- 2003
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In: Journal of Psychiatric and Mental Health Nursing. - : Wiley. - 1351-0126 .- 1365-2850. ; 10:1, s. 65-72
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Journal article (peer-reviewed)abstract
- The aims of this study were to describe: patient experiences of and nurse perceptions of patient experiences of forced medication before, during and after forced medication; patient and nurse perceptions of alternatives to forced medication; and whether patients, according to patients and nurses, retrospectively approved of forced medication. Eleven patients and nurses were interviewed about a certain situation of forced medication. Data were analysed by content analysis. The findings demonstrate that forced medication evokes a number of patient experiences according to patients and nurses. These are related to the disease, the situation of being forcibly medicated and the drug. Patients mentioned several alternatives to the forced medication, whereas nurses mentioned no alternatives. A minority of the patients, and not as many patients as the nurses’ thought, retrospectively approved of the use of forced medication. It can be concluded that patients and nurses do not share the same perceptions about what patients experience when forcibly medicated.
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| 6. |
- Haglund, Kristina, 1950-
(author)
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Patient and Staff Perceptions of Medication Administration and Locked Entrance Doors at Psychiatric Wards
- 2005
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Doctoral thesis (other academic/artistic)abstract
- The general aim was, within psychiatric inpatient care, to explore patient and staff perceptions with regard to medication administration and locked entrance doors. In Study I, medication administration was illuminated according to a mini-ethnographic approach. Nurses and voluntarily admitted patients were observed and interviewed. Two central categories of patient and nurse experiences were identified, get control and leave control. In Study II, patients and nurses were interviewed about patient experiences of forced medication. Identified experiences were related to the disease, being forcibly medicated, and the drug. In Study III, the frequency of and reasons for locked entrance doors on Swedish psychiatric inpatient wards were investigated. Seventy three per cent of the doors were locked on a specific day. According to ward managers, doors were most often locked in order to prevent patients from escaping, provide security and safety, and because legalisation. In Study IV/V, voluntarily admitted patients/mental nurse assistants and nurses were interviewed about advantages and disadvantages about being cared for/working on a psychiatric inpatient ward with a locked entrance door. Most advantages mentioned by patients and staff were categorised as protection against “the outside”, secure and efficient care, and control over patients. Most disadvantages mentioned by patients were categorised as confinement, dependence on the staff, and emotional problems for patients. Most disadvantages mentioned by staff were categorised as extra work, confinement, dependence on the staff, and a non-caring environment. In conclusion, medication administration and locked entrance doors are perceived as connected with staff’s control and restricted freedom for patients. Increased reflection among staff about how medication administration and locked entrance doors are perceived by patients would increase staff’s possibilities to prevent potential experiences of coercion due to these situations among patients in psychiatric inpatient care.
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| 7. |
- Haglund, Kristina, et al.
(author)
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Psychiatric care behind locked doors. A study regarding the frequency of and the reasons for locked psychiatric wards in Sweden
- 2007
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In: Journal of Psychiatric and Mental Health Nursing. - : Wiley. - 1351-0126 .- 1365-2850. ; 14:1, s. 49-54
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Journal article (peer-reviewed)abstract
- The general aim was to describe the frequency of and the reasons for locked doors at wards within Swedish psychiatric care. A questionnaire was answered by 193 ward managers. The findings demonstrated that 73% (n = 193) of the wards were locked on the day of investigation. Wards were sometimes locked in the absence of committed patients and sometimes open in the presence of committed patients. Wards were more often locked if at least one committed patient was present. Fewer wards for children and adolescents, than for adults and old people, were locked. More wards in the areas of Sweden's three largest cities, than in the rest of the country, were locked. Fourteen categories of reasons for locking wards were generated by a content analysis of answers to an open-ended question. Most answers were categorized as: prevent patients from escaping, legislation, provide patients and others with safety and security, prevent import and unwelcome visits, and staff's need of control. Staff working in psychiatric care ought to reflect upon and articulate reasons for, and decisions about, locking or opening entrance doors, with the limitation of patients' freedom in mind.
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| 8. |
- Haglund, Kristina, et al.
(author)
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Psychiatric wards with locked doors : advantages and disadvantages according to nurses and mental health nurse assistants
- 2006
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In: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 15:4, s. 387-394
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Journal article (peer-reviewed)abstract
- Aims and objective. To describe nurses’ and mental health nurse assistants’ perceptions of advantages and disadvantages about working on a psychiatric ward with a locked entrance door. Background. Psychiatric staff sometimes needs to protect patients from harming themselves or others. To keep the entrance door locked may help staff to achieve this goal. How locked entrance doors at psychiatric wards are experienced by staff, working on these wards, has been investigated to a very limited extent. Design. The study was explorative and descriptive. Method. Audio taped, semi-structured interviews with open-ended questions about advantages and disadvantages about working on a psychiatric ward with a locked entrance door, were conducted with 20 nurses and 20 mental health nurse assistants. Data were analyzed with content analysis. Results. A content analysis revealed eight categories of advantages and 18 categories of disadvantages. Most advantages mentioned by nurses and mental health nurse assistants were categorized as providing staff with control over patients, providing patients with a secure and efficient care and protecting patients and staff against ‘the outside’. Most disadvantages mentioned by nurses were categorized as causing extra work for staff, making patients feel confined, making patients feel dependent and creating a non-caring environment. Most disadvantages mentioned by mental health nurse assistants were categorized as causing extra work for staff, making patients feel confined, causing emotional problems for patients, making staff's power obvious and forcing patients to adapt to other patients’ needs. Nurses and mental health nurse assistants mentioned more disadvantages than advantages and nurses mentioned more disadvantages than mental health nurse assistants. Conclusion. Nurses and mental health nurse assistants perceive a number of advantages and disadvantages for themselves, patients and significant others with a locked door at a psychiatric ward. Most of these concern patients’ experiences. Relevance to clinical practice. It is important for staff working within psychiatric care to reflect upon the fact that a locked entrance door is connected with a range of negative as well as positive perceptions and to minimize patient and own concerns connected to the locked door.
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| 9. |
- Ander, Malin, 1983-, et al.
(author)
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A preliminary open trial of individualised cognitive behavioural therapy for young survivors of cancer during adolescence: initial findings and conceptualisation of distress
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Other publication (other academic/artistic)abstract
- Objective: A subgroup of adolescent and young adult (AYA) survivors of cancer in adolescence report high levels of psychological distress. Empirically-supported treatments tailored to the concerns experienced by this population are lacking. The aims of this study were to (1) conduct a preliminary evaluation of an individualised cognitive behavioural therapy (CBT) intervention for adolescent and young adult (AYA) survivors of cancer during adolescence and (2) identify and conceptualise cancer-related psychological concerns using cognitive-behavioural theory.Methods: A single-arm trial in which ten AYA (17-25 years) survivors of cancer during adolescence were offered up to 15 sessions of individualised CBT guided by behavioural case formulations was undertaken. Clinical outcomes were assessed at baseline, post-treatment, and three months follow-up. Before commencing treatment, two individual qualitative interviews were conducted with each participant. Analysis of cancer-related concerns was guided by qualitative framework analysis and theoretical thematic analysis, and cognitive-behavioural theory was used to inform identification of themes.Results: Ten of 201 potential participants invited to participate were included resulting in an overall participation rate of 5%. Nine participants completed treatment and eight completed the follow-up assessment. The majority of concerns reported were cancer-related and conceptualised as social avoidance, fear and avoidance of emotions and bodily symptoms, low mood and unbalance in activity, and worry and rumination.Conclusions: Given significant difficulties with recruitment, further research is needed to examine barriers and the impact of mental health literacy and stigma on help seeking in the AYA cancer survivor population. Internet-administered CBT self-help tailored towards the main presenting concerns of AYA cancer survivors may be a promising solution.
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| 10. |
- Ander, Malin, 1983-
(author)
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Cancer during adolescence : Psychological consequences and development of psychological treatment
- 2017
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Doctoral thesis (other academic/artistic)abstract
- The overall aim of the present thesis was to examine long-term psychological distress following cancer during adolescence and to develop a tailored psychological intervention to reduce cancer-related distress experienced by young survivors of adolescent cancer that was feasible and acceptable.Study I adopted a longitudinal design, assessing health-related quality of life (HRQOL) and symptoms of anxiety and depression among adolescents diagnosed with cancer from shortly after diagnosis (n=61) up to 10 years after diagnosis (n=28). Findings suggest that development of HRQOL and anxiety and depression is not linear and whilst the majority adjust well, a subgroup report long-term elevated distress. In Study II, experiences of cancer-related psychological distress were explored using unstructured interviews. Participants described cancer treatment as a mental challenge, felt marked and hindered by the cancer experience, and struggled with feelings of inadequacy and insecurity, existential issues, and difficulties handling emotions. Study III was a preliminary investigation of individualised cognitive behavioural therapy (CBT), alongside the identification and conceptualisation of cancer-related concerns using cognitive-behavioural theory. Significant difficulties with recruitment were encountered. Participants reported cancer-related concerns conceptualised as social avoidance, fear and avoidance of emotions and bodily symptoms, imbalance in activity, and worry and rumination. In Study IV, the acceptability and feasibility of an internet-administered CBT based self-help intervention (ICBT) for young persons diagnosed with cancer during adolescence was examined using an uncontrolled design and embedded process evaluation. The study protocol for Study IV was included in this thesis along with preliminary findings demonstrating significant difficulties with recruitment.Overall, findings suggest that whilst the majority of survivors of adolescent cancer adjust well over time a subgroup report elevated levels of distress and a range of distressing cancer-related experiences. A number of cancer-related difficulties were identified in Study II and III, which may be used to inform the development of future psychological treatments for the population. Preliminary investigation of the psychological interventions examined within this thesis further highlights the need for future development work to enhance the feasibility and acceptability of psychological support for the population.
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