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  • 1.
    Friedrichsen, Maria
    et al.
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Jaarsma, Tiny
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences.
    Thulesius, Hans
    Linnaeus Univ, Sweden; Reg Kronoberg, Sweden.
    Waldreus, Nana
    Karolinska Inst, Sweden; Karolinska Univ Hosp, Sweden.
    Hedman, Christel
    Karolinska Inst, Sweden; Stockholms Sjukhem Fdn, Sweden.
    Jaarsma, Pier
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences.
    Lythell, Caroline
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Milovanovic, Micha
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Internal Medicine in Norrköping.
    Karlsson, Marit
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Närvårdskliniken.
    Milberg, Anna
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Söderlund Schaller, Anne
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Assistant nurses & apos; experiences of thirst and ethical dilemmas in dying patients in specialized palliative care-A qualitative study2023In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 79, no 11, p. 4292-4303Article in journal (Refereed)
    Abstract [en]

    AimsTo describe assistant nurses experiences of thirst and ethical challenges in relation to thirst in terminally ill patients in specialized palliative care (PC) units.DesignA qualitative, reflexive thematic design with an inductive analysis was used.MethodsData were collected during November 2021-January 2023. Twelve qualitative interviews with assistant nurses working in five different specialized PC units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. The study was guided by the Standards for Reporting Qualitative Research (SRQR).ResultsTwo main themes were found in this study. (1) A world of practice for thirst relief where assistant nurses present a task-oriented world where the knowledge of thirst is an experience-based unspoken knowledge where mainly routines rule. (2) Ethical challenges presents different ethical problems that they meet in their practice, such as when patients express thirst towards the end of their life but are too severely ill to drink or when they watch lack of knowledge in the area among other health professionals.ConclusionThirst in dying patients is a neglected area that assistant nurses work with, without communicating it. Their knowledge of thirst and thirst relief are not expressed, seldom discussed, there are no policy documents nor is thirst documented in the patients record. There is a need for nurses to take the lead in changing nursing practice regarding thirst.Patient or Public ContributionNo patient or public contribution.ImpactIn palliative care, previous studies have shown that dying patients might be thirsty. Assistant nurses recognize thirst in dying patients, but thirst is not discussed in the team. Nurses must consider the patients fundamental care needs and address thirst, for example in the nursing process to ensure patients quality of life in the last days of life.Reporting MethodThe study was guided by the SRQR.What does this Article Contribute to the Wider Global Clinical Community?Thirst is a distressing symptom for all humans. However, when a patient is dying, he or she loses several functions and can no longer drink independently. The knowledge from this article contributes to our understanding of current practice and shows an area that requires immediate attention for the improvement of fundamental palliative care delivery.

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  • 2.
    Friedrichsen, Maria
    et al.
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Lythell, Caroline
    Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences.
    Waldreus, Nana
    Karolinska Inst, Sweden; Karolinska Univ Hosp, Sweden.
    Jaarsma, Tiny
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences.
    Ångström, Helene
    Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Milovanovic, Micha
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Internal Medicine in Norrköping.
    Karlsson, Marit
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Närvårdskliniken.
    Milberg, Anna
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Thulesius, Hans
    Linnaeus Univ, Sweden; Reg Kronoberg, Sweden.
    Hedman, Christel
    Karolinska Inst, Sweden; Stockholms Sjukhem Fdn, Sweden.
    Söderlund Schaller, Anne
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Jaarsma, Pier
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences.
    Ethical challenges around thirst in end-of-life care -experiences of palliative care physicians2023In: BMC Medical Ethics, E-ISSN 1472-6939, Vol. 24, no 1, article id 61Article in journal (Refereed)
    Abstract [en]

    BackgroundThirst and dry mouth are common symptoms in terminally ill patients. In their day-to-day practice, palliative care physicians regularly encounter ethical dilemmas, especially regarding artificial hydration. Few studies have focused on thirst and the ethical dilemmas palliative care physicians encounter in relation to this, leading to a knowledge gap in this area.AimThe aim of this study was to explore palliative care physicians experiences of ethical challenges in relation to thirst in terminally ill patients.MethodsA qualitative interview study with an inductive approach was conducted. Sixteen physicians working in four different specialised palliative care units and one geriatric care unit in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis.ResultsWhen presented with an ethical challenge relating to thirst, physicians attempted to balance benefits and harms while emphasizing respect for the patients autonomy. The ethical challenges in this study were: Starting, continuing or discontinuing drips; lack of evidence and traditions create doubt; and lack of interest and time may result in patient suffering.ConclusionsAll physicians in this study reported that "Starting, continuing or discontinuing drips" was the main ethical challenge they encountered, where some were so accustomed to the decision that they had a standard answer ready to offer patients and families. Physicians reported that drips were a symbol of thirst quenching, life and survival but were not necessary in end-of-life care. Others questioned the traditions regarding thirst and emphasised drips in particular.

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  • 3.
    Nilsson, Ellinor
    et al.
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences.
    Dubuc, Severine Hedberg
    Linköping University, Department of Biomedical and Clinical Sciences. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in West Östergötland, Habiliteringen.
    Ghafouri, Nazdar
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Söderlund Schaller, Anne
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Managing Fatigue: Experiences From a 6-week Course for Adults With Cerebral Palsy2023In: Archives of Rehabilitation Research and Clinical Translation, E-ISSN 2590-1095, Vol. 5, no 4, article id 100300Article in journal (Refereed)
    Abstract [en]

    Objective: To explore experiences of a 6-week Fatigue Management course (FMC) in adults with cerebral palsy (CP).Design: A qualitative study using semi-structured interviews. The study process followed the Consolidated Criteria for Reporting Qualitative Research (COREQ).Setting: The study was conducted in southeastern Sweden in an out-patient setting.Participants: Adults (N=8) with CP who had participated in FMC. Interventions: Not applicable.Main Outcome Measure: Qualitative content analysis of the transcribed interviews led to identification of a main category, categories, and subcategories, describing the participants' experiences of FMC.Results: The analysis identified 2 categories: Awareness regarding fatigue, with the 2 subcategories: A better understanding, and The feeling of not being alone; and Perceive opportunities for changes, with the 3 subcategories: Understanding the need for changes, Demanding process, and Taking steps toward change. These categories were summed up in the main category describing the participants' experiences of FMC: A challenging and eye-opening course that gave deeper self-understanding and thoughts about making changes.

  • 4.
    Friedrichsen, Maria
    et al.
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Waldreus, Nana
    Karolinska Inst, Sweden; Karolinska Univ Hosp, Sweden.
    Milovanovic, Micha
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Internal Medicine in Norrköping.
    Söderlund Schaller, Anne
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Jaarsma, Pier
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences.
    Jaarsma, Tiny
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences.
    The responsibility to quench thirst by providing drinks when a relative is dying spouses experience in specialist palliative home care2023In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 22, no 1, article id 184Article in journal (Refereed)
    Abstract [en]

    Background Thirst and dry mouth are common symptoms in terminally ill patients. It is known that family members usually request drips for their dying relative. Few studies have focused on thirst in terminally ill patients and their spouses experience of this, leading to a knowledge gap in this area. Aim The aim of this study was to explore spouses experiences of observing and managing thirst in a dying relative admitted to specialist palliative home care. Methods A qualitative interview study with an inductive approach was conducted. Eighteen spouses caring for their husband or wife admitted to specialist palliative home care in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. Results Three main themes emerged regarding spouses experiences of patients thirst: Knowledge and views of thirst; Control of fluid intake provides vital information; and Taking charge of their drinking is a life and death responsibility. Conclusions Spouses experience a responsibility to serve the dying person with fluids so that they will not get thirsty. It is so obvious and commonplace to them. To be able to fulfil this responsibility, they need to keep track of the patients fluid intake and know what quenches thirst. There is a need for research in this area to assist carers and patients in identifying which drinks best quench the patients thirst. Interventions are also needed to help provide/make available knowledge on suitable thirst-quenching drinks.

  • 5.
    Friedrichsen, Maria
    et al.
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Lythell, Caroline
    Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health.
    Jaarsma, Tiny
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences.
    Jaarsma, Pier
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences.
    Angstrom, Helene
    Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Milovanovic, Micha
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Internal Medicine in Norrköping.
    Karlsson, Marit
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Närvårdskliniken.
    Milberg, Anna
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Thulesius, Hans
    Linnaeus Univ, Sweden; Reg Kronoberg, Sweden.
    Hedman, Christel
    Karolinska Inst, Sweden; Stockholms Sjukhem Fdn, Sweden.
    Waldreus, Nana
    Karolinska Inst, Sweden; Karolinska Univ Hosp, Sweden.
    Söderlund Schaller, Anne
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Thirst or dry mouth in dying patients?-A qualitative study of palliative care physicians experiences2023In: PLOS ONE, E-ISSN 1932-6203, Vol. 18, no 8Article in journal (Refereed)
    Abstract [en]

    IntroductionThirst and dry mouth are common symptoms among patients at the end of life. In palliative care today, there is a focus on mouth care to alleviate thirst. There are no qualitative studies on thirst from a physicians experience, which is why this study is needed. PurposeThis study aimed to explore palliative care physicians experiences and views of thirst in patients at the end of life. MethodsA qualitative interview study with an inductive approach was carried out. Sixteen physicians working in specialised palliative care units in Sweden were included. The interviews were analysed with a reflexive thematic analysis. ResultsThe analysis resulted in three basic assumptions regarding thirst: It is dry mouth, not thirst; patients are dry in their mouth and thirsty; and, I do not know if they are thirsty. Further, four different themes regarding how to relieve thirst appeared: drips will not help thirst but cause harm; the body takes care of thirst itself; drips might help thirst; and, mouth care to relieve thirst or dry mouth. ConclusionsThe palliative care physicians had different experiences regarding thirst, from thirst never arising, to a lack of awareness. They thought good mouth care worked well to alleviate the feeling of thirst and dry mouth. Most physicians did not want to give patients drips, while some did. This study indicates that there are many unanswered questions when it comes to thirst at end-of-life and that further research is needed.

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  • 6.
    Peterson, Anna
    et al.
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Söderlund Schaller, Anne
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    How Hospital Patients Experience Pain the Previous 24 Hours-A Prevalence Assessment of Pain in Five Hospitals in Sweden2022In: Pain Management Nursing, ISSN 1524-9042, E-ISSN 1532-8635, Vol. 23, no 6, p. 878-884Article in journal (Refereed)
    Abstract [en]

    Background: Previous studies show that pain is common among hospital inpatients. Aim: This study measures the prevalence of pain and the impact of pain on sleep in patients admitted to five hospitals in Sweden.Methods: The patients were admitted to a surgical or a medical ward. They answered on a self-reported questionnaire about their average pain intensity and how much their pain interfered with their sleep the previous 24 hours, on a 010 numerical rating scale (NRS).Results: Of the 500 patients, 308 experienced pain (62%), (NRS >= 3) and 111 (22%) rated their pain as NRS >= 7. We found no difference between surgical and medical specialty regarding pain prevalence. The results suggest that roughly the same proportion of patients with pain also experienced poor sleep due to pain265 patients (53%) reported pain interference on sleep, NRS >= 3.Conclusions and Clinical Implications: This study shows that there is still an unacceptable high pain prevalence in inpatients and that patients experience pain as negatively impacting their sleep. Future pain care is likely to include a more comprehensive implementation strategy for the dissemination of knowledge, especially related to the complex context of todays healthcare system. That is, the possibility that anchor-ing new knowledge also benefits the patient is probably associated with optimization of the structural context. Future research should take this question further by examining how the organizational structure should be optimized for the dissemination of knowledge in healthcare professionals about pain and pain interference with sleep.

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  • 7.
    Söderlund Schaller, Anne
    et al.
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Peterson, Anna
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Bäckryd, Emmanuel
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Pain management in patients undergoing radiation therapy for head and neck cancer: a descriptive study2021In: Scandinavian Journal of Pain, ISSN 1877-8860, E-ISSN 1877-8879, Vol. 21, no 2, p. 256-265Article in journal (Refereed)
    Abstract [en]

    Objectives: Patients with head and neck cancer (HNC) experience serious pain related to tumour, surgery, chemotherapy, and radiotherapy treatment (RT). Oral mucositis, a painful complication of RT, may require opioid analgesics to control pain.This longitudinal study, during RT but also four weeks post-RT, examines the relationships between oral mucositis, pain, and opioid doses in in HNC patients. The aim was to evaluate the clinical effectiveness of an opioid treatment strategy. Methods: Sixty-three patients with HNC undergoing radiotherapy answered self-reported questionnaires on pain intensity on a 0-10 numerical rating scale (NRS) three times a week. Oral mucositis signs were evaluated using the WHO mucositis index score, ranging from 0 (normal) to 4 (severe), and pharmacological treatment with opioids was registered prospectively once a week. All data were related to given radiation dose, and all outcome measures at each time point therefore relate to the same radiation dose (i.e., not to when the patient was included in the study). Results: Opioids were used by 78% of the patients. Most of the patients experienced only mild pain (NRS 0-4), although the majority developed mucositis grade 2-4 according to WHO mucositis index. Function-related pain intensity and opioid doses were highest during the sixth week of RT, with 3.67 (0-9) in NRS and 84 (0-430) mg oral morphine equivalents per day (median, range). At that same time point, significant positive correlations were found between the grade of mucositis and pain intensities. Patients with mucositis grade 2-4 were investigated further; in this subgroup, we found that opioid doses did not differ between patients with mild pain and patients with moderate to severe pain. Our multivariate data analysis defined a cluster of patients characterized by the presence of mucositis, cancer site in pharynx, concomitant chemotherapy, and the absence of surgery. Conclusions: In HNC patients who were followed closely by pain care personnel during and after RT, pain was often satisfactorily alleviated with a structured use of opioids, including stepwise increases of fentanyl patches and oral morphine as needed. However, some patients with oral mucositis grade 2-4 experienced severe pain. Strong opioids, i.e. the third step of the WHO pain ladder, remain the mainstay of analgesic therapy in treating moderate to severe cancer-related pain, including patients with HNC. This real-life study indicates that RT-related pain is not a fatality. A proactive stance, monitoring these patients closely and regularly, is probably crucial in order to achieve good treatment results. Further studies are needed to develop better pain treatment strategies for those patients who develop severe oral mucositis-related pain despite intensive opioid treatment.

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  • 8.
    Schaller, Anne
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center. Linköping University, Faculty of Medicine and Health Sciences.
    Dragioti, Elena
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center. Linköping University, Faculty of Medicine and Health Sciences.
    Liedberg, Gunilla
    Linköping University, Department of Social and Welfare Studies, Division of Occupational Therapy. Linköping University, Faculty of Medicine and Health Sciences.
    Larsson, Britt
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center. Linköping University, Faculty of Medicine and Health Sciences.
    Are patient education and self-care advantageous for patients with head and neck cancer?: A feasibility study2019In: Nursing Open, E-ISSN 2054-1058, Nursing open, ISSN 2054-1058, Vol. 6, no 4, p. 1528-1541Article in journal (Refereed)
    Abstract [en]

    Aim: This study evaluates whether patient education and individually self-care reduces pain and improves QoL, mood and sleep during and after radiotherapy treatment for patients with head and neck cancer.

    Design: A longitudinal, two-armed feasibility study design was performed.

    Methods: Sixty-four participants with curative intent were included in the study. All participants answered questions about pain three times a week and completed a survey questionnaire about pain, QoL, psychological aspects and barriers towards pain management at baseline, at 4 weeks and at 10 weeks. Thirty-four of the participants attended in two education sessions on pain based on their beliefs about pain and received individualized self-care instructions based on their weekly rating of pain.

    Result: This study did not find any significant group differences for the pain, QoL, mood and sleep.

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  • 9.
    Peterson, Anna
    et al.
    Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Berggården, Marie
    Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Söderlund Schaller, Anne
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Larsson, Britt
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Nurses' Advocacy of Clinical Pain Management in Hospitals: A Qualitative Study2019In: Pain Management Nursing, ISSN 1524-9042, E-ISSN 1532-8635, Vol. 20, no 2, p. 133-139Article in journal (Refereed)
    Abstract [en]

    BACKGROUND AND AIMS: In hospitals, efficient pain care given by nurses is warrented because pain prevalence in the previous 24 hours has been reported to be high. This study aims to clarify nurse's experiences with pain management as a specific responsibility added to their regular clinical duties. In addition, this study aims to elucidate these nurses' attitudes about sharing their pain knowledge with their colleagues.

    DESIGN, PARTICIPANTS AND METHODS: This study includes semi-structured interviews of 17 registered staff nurses at the University Hospital, Linköping Sweden. The interviews were analyzed using a qualitative content analysis.

    RESULTS: A main thematic category emerged: Selected nurses experience shortcomings and obstacles in clinical pain management and are willing to improve their knowledge and share it with their colleagues. This main category was based on the following four sub-categories: a valued but unclear assignment; the presence of facilitators and obstacles; in need of support and collaboration; and a deficit of own knowledge and future teaching of colleagues.

    CONCLUSIONS: Overall, the nurses maintained a constructive attitude about their responsibilities to teach colleagues about pain management in spite the difficulties they experienced fulfilling all their responsibilities. Nurses who have the added responsibility to teach their colleagues pain management need specialized education in pain management and pedagogic skills for teaching clinical pain management. Moreover, these nurses need to be given the time, support, and collaborative opportunities to develop their knowledge. A nursing model that provides nurses trained in pain management education should be developed and evaluated.

  • 10. Order onlineBuy this publication >>
    Söderlund Schaller, Anne
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Impact of Pain and Evaluation of Education and Self-Care in Patients with Head and Neck Cancer2018Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    It is not unusual for patients with head and neck cancer (HNC) to suffer from both tumor and treatment-related pain that is difficult to alleviate despite individualized pharmacological treatment.

    The presence of concomitant various dimensions of pain in patients during the often difficult period following radiotherapy (RT) has not been elucidated. Several aspects concerning the importance of relatives for HNC patients have been addressed. However, little attention has been given to how relatives perceive patients with HNC pain and it is important to further elucidate this sparsely studied topic. Knowledge about health-related quality of life (HR-QoL) in this patient group during early RT is limited and needs to be assessed in relation to diagnosis and treatment. Self-care (SC) refers to what patients do on their own to achieve, maintain, and promote optimal health and may help reduce pain for several pain conditions. The impact of patient education and SC on pain and other common HNC symptoms need further clarification.

    The aims of this thesis were:

    1. to describe experiences and perceptions of pain in patients with HNC shortly after RT
    2. to describe how relatives perceived the patient’s situation, especially concerning pain, and how they experienced their own situation
    3. to identify factors that impact HR-QoL during early RT
    4. to develop effective pain management strategies, maintain activities of daily living, and promote HR-QoL in patients with HNC undergoing RT using patient education and SC instruction.

    In paper I patients with HNC described existential pain – expressed as fear of death, meaninglessness and guilt – already during and shortly after RT. Physical pain, psychological distress and social withdrawal played a significant role. Patients with HNC who were treated with RT should also proactively be offered treatment for the various dimensions of pain.

    In paper II relatives described their mental stress in response to a challenging situation that required their active support to help ease the patient's difficult condition. The interviews with relatives also revealed a lack of personal knowledge and frustration over the inability to participate in patient care, as well as inadequate support from the healthcare system. Early interventions from the healthcare system on behalf of the relatives may be necessary to meet these needs.

    In Paper III regression models revealed that pain intensity and symptoms of depression adversely affected HR-QoL in patients with HNC during early RT. Customized prehabilitation programs aimed at preventing pain and symptoms of depression could help preserve good HR-QoL.

    Paper IV assessed individual patient education and SC initiatives that resulted in a tendency for lower pain intensity during a portion of RT. One way to potentially enhance the benefits of education and SC could be to improve for example patient motivation and self-efficacy, as well as to optimize supportive efforts from caregivers.

    In conclusion, by identifying factors that can impact HR-QoL and evaluating the effect of patient education and SC, this thesis contributes to knowledge on perceived pain and the patient’s situation during and shortly after RT in patients with HNC and their relatives. This thesis points to the need for evaluation and further development of patient education and effective SC strategies for pain in patients with HNC undergoing RT, as well as for development and evaluation of support strategies for patients with pain and their families during and after RT.

    List of papers
    1. Experiences of Pain: A Longitudinal, Qualitative Study of Patients with Head and Neck Cancer Recently Treated with Radiotherapy
    Open this publication in new window or tab >>Experiences of Pain: A Longitudinal, Qualitative Study of Patients with Head and Neck Cancer Recently Treated with Radiotherapy
    2015 (English)In: Pain Management Nursing, ISSN 1524-9042, E-ISSN 1532-8635, Vol. 16, no 3, p. 336-345Article in journal (Refereed) Published
    Abstract [en]

    It is not unusual for patients with head and neck cancer (HNC) to suffer from both tumor- and treatment-related pain that is difficult to alleviate despite individualized pain management. The aim of this qualitative study was to describe how HNC patients experience pain and how pain influences those who are treated with radiotherapy (RT). Qualitative semistructured interviews were performed 1 and 6 months after patients completed RT. The interviews addressed symptoms, moods, and suffering. The study included 26 patients with HNC who had recently completed RT. The interviews were analyzed using manifest content analysis. The main category was: HNC patients did not report that their severe physical pain influenced their psychological suffering, but it did influence their social lives. Furthermore, four categories were revealed: pain in the head and neck region, overwhelming fatigue, altered mood and preoccupied mind, and decreased participation and changed relationships. Physical pain, psychological distress, and social withdrawal were prominent at both interviews and consequently their situation can be considered as chronic. Remarkably, patients did not express a clear relationship between pain and psychological load. This may imply a biomedical view of pain or may reflect the difficult situation patients were in (i.e., facing a possibly life-threatening cancer). Thus, their situation might require a prioritization and might negatively affect the possibility of identifying the interaction between the different pain dimensions. The biopsychosocial model of chronic pain aims to understand the interaction between pain and psychosocial factors. Interventions aiming to teach patients with HNC how to internalize the biopsychosocial model framework to manage pain could be useful and should be evaluated in future research.

    National Category
    Basic Medicine
    Identifiers
    urn:nbn:se:liu:diva-115363 (URN)10.1016/j.pmn.2014.08.010 (DOI)000355212500022 ()25532691 (PubMedID)
    Available from: 2015-03-13 Created: 2015-03-13 Last updated: 2018-04-13
    2. How relatives of patients with head and neck cancer experience pain, disease progression and treatment: A qualitative interview study
    Open this publication in new window or tab >>How relatives of patients with head and neck cancer experience pain, disease progression and treatment: A qualitative interview study
    2014 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no 4, p. 405-410Article in journal (Refereed) Published
    Abstract [en]

    Purpose: This study of relatives to patients with head and neck cancer (HNC) treated with radiotherapy describes how the relatives experienced the patients situation, especially with respect to pain, and how the relatives themselves experienced the situation. Methods: Semi-structured interviews of 21 relatives to HNC patients who suffered from pain were conducted, and a qualitative content analysis was performed. Results: The relatives experienced that the patients suffered from physical, psychological, and social pain. A dark picture consisting of lack of participation and knowledge, psychological distress, and lack of support were reported. Thus, a main category: relatives struggle with loved ones pains related to head and neck cancer treatment and with their own demanding situation - was based on the following four categories: inability to relieve and comprehend the physical suffering of the patients; overwhelming emotions were experienced that affect the patients and the relatives themselves; in need of support from the health care service; and altered daily activities and family roles due to illness and treatment. Conclusion: In patients physical, psychological, and social pain were prominent and in relatives psychological distress, lack of knowledge and support were experienced. Thus, to reduce pain and anxiety in patients and relatives, the health care professionals should provide relevant knowledge about pain management. The health care professionals should also provide educational interventions that address the psychological and social factors that impact pain for HNC patients and their relatives. Well-thought supporting care and easily accessible information about practical concerns should be offered to HNC patients and their relatives.

    Place, publisher, year, edition, pages
    Elsevier, 2014
    Keywords
    Head and neck cancer; Relatives; Pain; Qualitative content analysis; Interviews
    National Category
    Sociology Basic Medicine
    Identifiers
    urn:nbn:se:liu:diva-109583 (URN)10.1016/j.ejon.2014.03.008 (DOI)000339533600010 ()24726013 (PubMedID)
    Available from: 2014-08-21 Created: 2014-08-21 Last updated: 2018-04-13
    3. Quality of life during early radiotherapy in patients with head and neck cancer and pain
    Open this publication in new window or tab >>Quality of life during early radiotherapy in patients with head and neck cancer and pain
    2017 (English)In: Journal of Pain Research, E-ISSN 1178-7090, Vol. 10, p. 1697-1704Article in journal (Refereed) Published
    Abstract [en]

    Background: Patients with head and neck cancer (HNC) have a potentially severe diagnosis and often suffer from tumor-related pain as well as from adverse side effects of treatment such as radiotherapy (RT). Knowledge about quality of life (QoL) during early RT in this group is limited and should be assessed in relation to diagnosis and treatment. Purpose: The purpose of this cross-sectional study was to identify potential factors that may influence QoL in patients with HNC during the early stages of RT (no later than two weeks of ongoing RT). We hypothesized that pain intensity, pain interference, catastrophizing, and mood disturbances are associated with QoL during early RT. Patients and methods: In this study, 54 patients (53% of eligible patients) diagnosed with HNC were consecutively recruited from the regular flow to the Pain and Rehabilitation Center at Linkoping University. The patients completed self-reported questionnaires on sociodemo-graphics, pain intensity, pain interference, anxiety, depression, pain catastrophizing, and QoL. Results: The patients in this study scored high for QoL, low for pain intensity, and low for pain interference. The patients reported minor depressive symptoms and anxiety symptoms. Regression analyses showed that pain intensity and depressive symptoms negatively influenced QoL. Conclusion: No later than two weeks of RT, pain intensity and depression negatively influenced QoL in patients with HNC. Early screening for pain and depression in a targeted preventive strategy might maintain QoL during the course of the RT for patients with HNC. This assumption needs to be further investigated.

    Place, publisher, year, edition, pages
    DOVE MEDICAL PRESS LTD, 2017
    Keywords
    pain; quality of life; head and neck cancer; radiotherapy; cross-sectional study
    National Category
    Physiotherapy
    Identifiers
    urn:nbn:se:liu:diva-139653 (URN)10.2147/JPR.S138113 (DOI)000405597700005 ()28761374 (PubMedID)
    Available from: 2017-08-16 Created: 2017-08-16 Last updated: 2024-01-17
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    Impact of Pain and Evaluation of Education and Self-Care in Patients with Head and Neck Cancer
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  • 11.
    Söderlund Schaller, Anne
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Dragioti, Elena
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Liedberg, Gunilla
    Linköping University, Department of Social and Welfare Studies, Division of Occupational Therapy. Linköping University, Faculty of Medicine and Health Sciences.
    Larsson, Britt
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Quality of life during early radiotherapy in patients with head and neck cancer and pain2017In: Journal of Pain Research, E-ISSN 1178-7090, Vol. 10, p. 1697-1704Article in journal (Refereed)
    Abstract [en]

    Background: Patients with head and neck cancer (HNC) have a potentially severe diagnosis and often suffer from tumor-related pain as well as from adverse side effects of treatment such as radiotherapy (RT). Knowledge about quality of life (QoL) during early RT in this group is limited and should be assessed in relation to diagnosis and treatment. Purpose: The purpose of this cross-sectional study was to identify potential factors that may influence QoL in patients with HNC during the early stages of RT (no later than two weeks of ongoing RT). We hypothesized that pain intensity, pain interference, catastrophizing, and mood disturbances are associated with QoL during early RT. Patients and methods: In this study, 54 patients (53% of eligible patients) diagnosed with HNC were consecutively recruited from the regular flow to the Pain and Rehabilitation Center at Linkoping University. The patients completed self-reported questionnaires on sociodemo-graphics, pain intensity, pain interference, anxiety, depression, pain catastrophizing, and QoL. Results: The patients in this study scored high for QoL, low for pain intensity, and low for pain interference. The patients reported minor depressive symptoms and anxiety symptoms. Regression analyses showed that pain intensity and depressive symptoms negatively influenced QoL. Conclusion: No later than two weeks of RT, pain intensity and depression negatively influenced QoL in patients with HNC. Early screening for pain and depression in a targeted preventive strategy might maintain QoL during the course of the RT for patients with HNC. This assumption needs to be further investigated.

    Download full text (pdf)
    fulltext
  • 12.
    Peterson, Anna
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Carlfjord, Siw
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences.
    Schaller, Anne
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Gerdle, Björn
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Larsson, Britt
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Using education and support strategies to improve the way nurses assess regular and transient pain: A quality improvement study of three hospitals2017In: Scandinavian Journal of Pain, ISSN 1877-8860, E-ISSN 1877-8879, Vol. 16, no 1, p. 15-21Article in journal (Refereed)
    Abstract [en]

    Background and aims

    Systematic and regular pain assessment has been shown to improve pain management. Well-functioning pain assessments require using strategies informed by well-established theory. This study evaluates documented pain assessments reported in medical records and by patients, including reassessment using a Numeric Rating Scale (NRS) after patients receive rescue medication.

    Methods

    Documentation surveys (DS) and patient surveys (PS) were performed at baseline (BL), after six months, and after 12 months in 44 in-patient wards at the three hospitals in Östergötland County, Sweden. Nurses and nurse assistants received training on pain assessment and support. The Knowledge to Action Framework guided the implementation of new routines.

    Results

    According to DS pain assessment using NRS, pain assessment increased significantly: from 7% at baseline to 36% at 12 months (p < 0.001). For PS, corresponding numbers were 33% and 50% (p < 0.001). According to the PS, the proportion of patients who received rescue medication and who had been reassessed increased from 73% to 86% (p = 0.003). The use of NRS to document pain assessment after patients received rescue medication increased significantly (4% vs. 17%; p < 0.001).

    Conclusions

    After implementing education and support strategies, systematic pain assessment increased, an encouraging finding considering the complex contexts of in-patient facilities. However, the achieved assessment levels and especially reassessments related to rescue medication were clinically unsatisfactory. Future studies should include nursing staff and physicians and increase interactivity such as providing online education support. A discrepancy between documented and reported reassessment in association with given rescue medication might indicate that nurses need better ways to provide pain relief.

    Implications

    The fairly low level of patient-reported pain via NRS and documented use of NRS before and 12 months after the educational programme stresses the need for education on pain management in nursing education. Implementations differing from traditional educational attempts such as interactive implementations might complement educational programmes given at the work place. Standardized routines for pain management that include the possibility for nurses to deliver pain medication within well-defined margins might improve pain management and increase the use of pain assessments. Further research is needed that examines the large discrepancy between patient-reported pain management and documentation in the medical recording system of transient pain.

  • 13.
    Schaller, Anne
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Larsson, Britt
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Lindblad, Mona
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Liedberg, Gunilla M
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Experiences of Pain: A Longitudinal, Qualitative Study of Patients with Head and Neck Cancer Recently Treated with Radiotherapy2015In: Pain Management Nursing, ISSN 1524-9042, E-ISSN 1532-8635, Vol. 16, no 3, p. 336-345Article in journal (Refereed)
    Abstract [en]

    It is not unusual for patients with head and neck cancer (HNC) to suffer from both tumor- and treatment-related pain that is difficult to alleviate despite individualized pain management. The aim of this qualitative study was to describe how HNC patients experience pain and how pain influences those who are treated with radiotherapy (RT). Qualitative semistructured interviews were performed 1 and 6 months after patients completed RT. The interviews addressed symptoms, moods, and suffering. The study included 26 patients with HNC who had recently completed RT. The interviews were analyzed using manifest content analysis. The main category was: HNC patients did not report that their severe physical pain influenced their psychological suffering, but it did influence their social lives. Furthermore, four categories were revealed: pain in the head and neck region, overwhelming fatigue, altered mood and preoccupied mind, and decreased participation and changed relationships. Physical pain, psychological distress, and social withdrawal were prominent at both interviews and consequently their situation can be considered as chronic. Remarkably, patients did not express a clear relationship between pain and psychological load. This may imply a biomedical view of pain or may reflect the difficult situation patients were in (i.e., facing a possibly life-threatening cancer). Thus, their situation might require a prioritization and might negatively affect the possibility of identifying the interaction between the different pain dimensions. The biopsychosocial model of chronic pain aims to understand the interaction between pain and psychosocial factors. Interventions aiming to teach patients with HNC how to internalize the biopsychosocial model framework to manage pain could be useful and should be evaluated in future research.

    Download full text (pdf)
    fulltext
  • 14.
    Schaller, Anne
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Liedberg, Gunilla
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Larsson, Britt
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    How relatives of patients with head and neck cancer experience pain, disease progression and treatment: A qualitative interview study2014In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no 4, p. 405-410Article in journal (Refereed)
    Abstract [en]

    Purpose: This study of relatives to patients with head and neck cancer (HNC) treated with radiotherapy describes how the relatives experienced the patients situation, especially with respect to pain, and how the relatives themselves experienced the situation. Methods: Semi-structured interviews of 21 relatives to HNC patients who suffered from pain were conducted, and a qualitative content analysis was performed. Results: The relatives experienced that the patients suffered from physical, psychological, and social pain. A dark picture consisting of lack of participation and knowledge, psychological distress, and lack of support were reported. Thus, a main category: relatives struggle with loved ones pains related to head and neck cancer treatment and with their own demanding situation - was based on the following four categories: inability to relieve and comprehend the physical suffering of the patients; overwhelming emotions were experienced that affect the patients and the relatives themselves; in need of support from the health care service; and altered daily activities and family roles due to illness and treatment. Conclusion: In patients physical, psychological, and social pain were prominent and in relatives psychological distress, lack of knowledge and support were experienced. Thus, to reduce pain and anxiety in patients and relatives, the health care professionals should provide relevant knowledge about pain management. The health care professionals should also provide educational interventions that address the psychological and social factors that impact pain for HNC patients and their relatives. Well-thought supporting care and easily accessible information about practical concerns should be offered to HNC patients and their relatives.

    Download full text (pdf)
    fulltext
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