Non-invasive ventilation in the care of patients with chronic obstructive pulmonary disease with palliative care needs: a scoping review.

BACKGROUND: Patients with severe chronic obstructive pulmonary disease (COPD) could have palliative care (PC) needs because of unmet needs such as dyspnoea. This may lead to anxiety and may have an impact on patients' ability to perform daily activities of living. PC can be started when patients with COPD have unmet needs and can be provided alongside disease-modifying therapies. Non-invasive ventilation (NIV) could be an important measure to manage dyspnoea in patients with COPD in need of PC. A scoping review was conducted to gain an overview of the existing research and to identify knowledge gaps. The aim of this scoping review was to systematically map published studies on the use of NIV in patients with COPD with PC needs, including the perspectives and experiences of patients, families, and healthcare professionals (HCPs). METHODS: This review was conducted following the framework of Arksey and O'Malley. The reporting of the review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. The review protocol was published. AMED, CINAHL, Embase, MEDLINE, PEDro, and PsycInfo were searched from inception to November 14, 2022. The included studies had to report the perspectives and experiences of COPD patients, relatives, and HCPs regarding NIV in the care of patients with COPD with PC needs. In pairs, the authors independently assessed studies' eligibility and extracted data. The data were organised thematically. The results were discussed in a consultation exercise. RESULTS: This review included 33 papers from 32 studies. Four thematic groupings were identified: preferences and attitudes towards the use of NIV; patient participation in the decision-making process of NIV treatment; conflicting results on the perceived benefits and burdens of treatment; and heterogenous clinical outcomes in experimental studies. Patients perceived NIV as a 'life buoy' to keep them alive. Many patients wanted to take part in the decision-making process regarding NIV treatment but expressed varying degrees of inclusion by HCPs in such decision-making. Conflicting findings were identified regarding the perceived benefits and burdens of NIV treatment. Diversity in heterogeneous clinical outcomes were reported in experimental studies. CONCLUSIONS: There is a need for more studies designed to investigate the effectiveness of NIV as a palliative measure for patients with COPD with PC needs using comprehensive outcomes. It is especially important to gain more knowledge on the experiences of all stakeholders in the use of home-based NIV treatment to these patients.

Home administration of needle injections for children with rheumatic diseases: A qualitative study on nurses' perception of their educational role.

PURPOSE: To explore nurses' perceptions of their educational role, pedagogical competence, and practice in teaching children with rheumatic diseases and their parents to manage subcutaneous injections at home. DESIGN AND METHODS: In this qualitative study, we used thematic analysis to analyze data from three focus groups with 14 nurses responsible for patient education at one pediatric ward and two outpatient clinics. RESULTS: We identified three main themes capturing nurses' perceptions of their educational role: myriad expectations, awareness of own competence, and facilitation and prioritization of patient education. Nurses perceived patient education as an expected but challenging duty of their work. They described a lack of pedagogical competence, insecurity in managing parents' and children's fears and worries, and limited organizational structures guiding their educational role. Nurses who worked in outpatient clinics felt freer to individualize education compared to ward nurses. CONCLUSIONS: Nurses perceive their educational role as significant in enabling children and parents to manage subcutaneous injections at home; however, they require pedagogical competence integrated with daily practice to provide high-quality care. Short-term admissions require a different organization of patient education than before. PRACTICAL IMPLICATIONS: Nurses need increased training in communication and management of children's pain and fear during needle injections. Competence development should include opportunities for reflection and guidance in clinical practice. Pediatric specialist nurses at outpatient clinics seem to have better competence to provide individual patient education for these families. The potential advantage of web-based solutions for nurses' patient education is a promising avenue for future research.

Non-invasive ventilation in the palliative care of patients with chronic obstructive pulmonary disease: a scoping review protocol.

INTRODUCTION: Patients with advanced chronic obstructive pulmonary disease (COPD) experience a great symptom burden. Breathlessness is a very frequently reported symptom that negatively affects all aspects of daily life and could lead to fear of dying. Non-invasive ventilation (NIV) could be an important palliative measure to manage breathlessness in patients with advanced COPD. We decided to conduct a scoping review to attain an overview of the existing research and to identify knowledge gaps. This scoping review aims to systematically map published studies on the use of NIV in the palliative care of COPD patients, including the perspectives and experiences of patients, families and healthcare professionals. METHODS AND ANALYSIS: This scoping review will employ the framework of Arksey and O'Malley. The reporting will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. A comprehensive and systematic search strategy will be developed in cooperation with an experienced librarian. Database searches will be conducted in AMED, PEDro, Embase, CINAHL, PsycInfo and MEDLINE in February 2021. Pairs of authors will independently assess studies' eligibility and extract data using a standardised data-charting form. The data will be inductively summarised and organised thematically. The results will be discussed with an advisory board consisting of nurses and physicians from respiratory and intensive care units. ETHICS AND DISSEMINATION: Approval for the workshop with the advisory board has been attained from the Norwegian Centre for Research Data (480222), and approval will be attained from the Personal Data Protection Officers of the participating hospitals. All advisory board participants will sign an informed written consent before participation. The results could contribute to developing the body of evidence on the use of NIV in the palliative care of COPD patients and serve to identify directions for future research.

I don't want to think about it: a qualitative study of children (6-18 years) with rheumatic diseases and parents' experiences with regular needle injections at home.

BACKGROUND: Overall outcomes of pediatric rheumatic diseases (RD) have improved due to treatment with biologic agents and methotrexate. For many children, this treatment often entails regular needle injections. Pain and fear of needle injections are common in childhood, but how children and parents handle long-term needle injections at home has not been fully explored. This study aimed to explore how regular needle injections affect children with RD and their parents in their daily living. METHODS: This explorative qualitative study used individual interviews and focus groups to ensure a comprehensive investigation of the topic. Children aged 6 to 16 years (n = 7) and their parents (n = 8) were interviewed individually 4 to 6 months after the onset of needle injection treatment. The focus groups included children aged 11 to 17 years (n = 9) and parents (n = 8) with a minimum of 6 months of experience with injection treatment. Data were analyzed using thematic analysis. RESULTS: The main themes; "challenges," "motivational factors," and "routines" captured experiences and strategies that influenced the continuation of needle injections at home. Many children feared the moment immediately before the needle stick, although they had become accustomed to the pain. Most parents felt insecure about handling needle injections and lacked follow-up from healthcare providers. The children's experience of treatment effects and self-confidence were essential to maintain motivation for further injections. A number of coping strategies helped children focus away from injection related discomfort, often discovered by chance. Facilitating firm routines and shared responsibility within families helped children develop self-confidence during the procedure. Children and parents struggled to find suitable information on the Internet. CONCLUSIONS: Children and parents experienced long-term needle injections challenging. They used their own limited resources and cooperated within the families to create routines and to introduce coping strategies necessary to manage and keep up with the procedure. Although the injection itself was not experienced very painful, the discomfort, worries and impact on daily life represented far more than a little needle stick, and thus needs more attention from healthcare providers.

Children's fear of needle injections: a qualitative study of training sessions for children with rheumatic diseases before home administration.

BACKGROUND: Treatment of rheumatic diseases in children often includes long-term needle injections, which represent a risk for refusing medication based on potential needle-fear. How nurses manage children's fear and pain during the initial educational training session of subcutaneous injections, may affect the management of the subsequent injections in the home settings. The aim of this study was to explore how children expressed fear and pain during these training sessions, and how adults' communication affected children's expressed emotions. METHODS: This qualitative explorative study used video observations and short interviews during training sessions in a rheumatic hospital ward. Participants were children between five and fifteen years (n = 8), their parents (n = 11) and nurses (n = 7) in nine training sessions in total. The analysis followed descriptions of thematic analysis and interaction analysis. RESULTS: The children expressed fears indirectly as cues and nonverbal signs more often than direct statements. Three children stated explicit being afraid or wanting to stop. The children worried about needle-pain, but experienced the stinging pain after the injection more bothersome. The technical instructions were detailed and comprehensive and each nurse shaped the structure of the sessions. Both nurses and parents frequently offered coping strategies unclearly without sufficient time for children to understand. We identified three main adult communication approaches (acknowledging, ambiguous and disregarding) that influenced children's expressed emotions during the training session. CONCLUSIONS: Children's expression of fear was likely to be indirectly, and pain was mostly related to the injection rather than the needle stick. When adults used an acknowledging communication and offered sufficient coping strategies, children seemed to become involved in the procedure and acted with confidence. The initial educational training session may have a great impact on long-term repeated injections in a home setting by providing children with confidence at the onset.

Adolescents' experience of complex persistent pain.

BACKGROUND AND AIMS: Persistent (chronic) pain is a common phenomenon in adolescents. When young people are referred to a pain clinic, they usually have amplified pain signals, with pain syndromes of unconfirmed ethology, such as fibromyalgia and complex regional pain syndrome (CRPS). Pain is complex and seems to be related to a combination of illness, injury, psychological distress, and environmental factors. These young people are found to have higher levels of distress, anxiety, sleep disturbance, and lower mood than their peers and may be in danger of entering adulthood with mental and physical problems. In order to understand the complexity of persistent pain in adolescents, there seems to be a need for further qualitative research into their lived experiences. The aim of this study was to explore adolescents' experiences of complex persistent pain and its impact on everyday life. METHODS: The study has an exploratory design with individual in-depth interviews with six youths aged 12-19, recruited from a pain clinic at a main referral hospital in Norway. A narrative approach allowed the informants to give voice to their experiences concerning complex persistent pain. A hermeneutic analysis was used, where the research question was the basis for a reflective interpretation. RESULTS: Three main themes were identified: (1) a life with pain and unpleasant bodily expressions; (2) an altered emotional wellbeing; and (3) the struggle to keep up with everyday life. The pain was experienced as extremely strong, emerging from a minor injury or without any obvious causation, and not always being recognised by healthcare providers. The pain intensity increased as the suffering got worse, and the sensation was hard to describe with words. Parts of their body could change in appearance, and some described having pain-attacks or fainting. The feeling of anxiety was strongly connected to the pain. Despair and uncertainty contributed to physical disability, major sleep problems, school absence, and withdrawal from leisure activities. Their parents were supportive, but sometimes more emotionally affected than themselves. The adolescents described how they strived for normality and to not become an outsider. Being met with necessary facilitation from school was important, as well as keeping up with friends. These adolescents had all been treated by an interdisciplinary pain team, and stated that they had an optimistic view of the future, despite still having some symptoms. CONCLUSIONS: The study provides new insights into adolescents' own experiences of complex persistent pain occurring unexpectedly, developing dramatically over time, and influencing all parts of their everyday lives. The adolescents entered vicious cycles, with despair and decreased physical and social functioning, with the risk of isolation and role-loss. However, these young people seem to have a strong motivation to strive for normalcy. IMPLICATIONS: These findings may encourage healthcare providers to perceive adolescents' persistent pain through the lenses of a biopsychosocial approach. We suggest that further research into adolescents with persistent pain should include longitudinal studies of quality of life and gender perspectives.