Perspectives on Online Resources for People Experiencing Pain: A Qualitative Study.

Innovations in technology offer potential solutions to address pain care inequities. To maximize impacts, greater understanding is needed regarding preferences and priorities of people experiencing or treating pain. This study conducted focus groups to investigate the perspectives of people with pain and healthcare workers regarding online resources for pain management. Researchers asked about barriers to current pain management and what resources would be most desired in an online format to meet needs. Participants were a randomly selected sub-sample of adults from a northwestern region of the United States who participated in an online, survey-based study. Eligible participants identified as either a person who had received treatment for pain or a healthcare worker who cared for people with pain. Of the 199 survey respondents, 30 participated in one of three focus group sessions. Focus groups were conducted using videoconferencing technology, then recorded, transcribed, and analyzed using thematic analysis. Focus group participants included 22 adults who identified as a person treated for pain of any type and 8 healthcare workers. Themes relating to eHealth use reflected desires for (1) freely accessible and vetted pain management information in one place, (2) reliable information tailored to need and pain type, and (3) easy-to-use resources. Findings revealed that some effective pain management resources do exist, yet obstacles including inflexible and inequitable healthcare practices and lack of knowledge about options may limit access to these resources. Including preferences of user groups can assist in creating resources that are likely to be useful for those with pain and their caregivers. Innovations are needed to address persisting gaps in care.

Wilson M ，Katz JR ，Chase MD ，Bindler RJ ，Rangel TL ，Penders RA ，Kohlmeier PS ，Lewis J ... -  《-》

Healthcare workers' informal uses of mobile phones and other mobile devices to support their work: a qualitative evidence synthesis.

Healthcare workers sometimes develop their own informal solutions to deliver services. One such solution is to use their personal mobile phones or other mobile devices in ways that are unregulated by their workplace. This can help them carry out their work when their workplace lacks functional formal communication and information systems, but it can also lead to new challenges. To explore the views, experiences, and practices of healthcare workers, managers and other professionals working in healthcare services regarding their informal, innovative uses of mobile devices to support their work. We searched MEDLINE, Embase, CINAHL and Scopus on 11 August 2022 for studies published since 2008 in any language. We carried out citation searches and contacted study authors to clarify published information and seek unpublished data. We included qualitative studies and mixed-methods studies with a qualitative component. We included studies that explored healthcare workers' views, experiences, and practices regarding mobile phones and other mobile devices, and that included data about healthcare workers' informal use of these devices for work purposes. We extracted data using an extraction form designed for this synthesis, assessed methodological limitations using predefined criteria, and used a thematic synthesis approach to synthesise the data. We used the 'street-level bureaucrat' concept to apply a conceptual lens to our findings and prepare a line of argument that links these findings. We used the GRADE-CERQual approach to assess our confidence in the review findings and the line-of-argument statements. We collaborated with relevant stakeholders when defining the review scope, interpreting the findings, and developing implications for practice. We included 30 studies in the review, published between 2013 and 2022. The studies were from high-, middle- and low-income countries and covered a range of healthcare settings and healthcare worker cadres. Most described mobile phone use as opposed to other mobile devices, such as tablets. We have moderate to high confidence in the statements in the following line of argument. The healthcare workers in this review, like other 'street-level bureaucrats', face a gap between what is expected of them and the resources available to them. To plug this gap, healthcare workers develop their own strategies, including using their own mobile phones, data and airtime. They also use other personal resources, including their personal time when taking and making calls outside working hours, and their personal networks when contacting others for help and advice. In some settings, healthcare workers' personal phone use, although unregulated, has become a normal part of many work processes. Some healthcare workers therefore experience pressure or expectations from colleagues and managers to use their personal phones. Some also feel driven to use their phones at work and at home because of feelings of obligation towards their patients and colleagues. At best, healthcare workers' use of their personal phones, time and networks helps humanise healthcare. It allows healthcare workers to be more flexible, efficient and responsive to the needs of the patient. It can give patients access to individual healthcare workers rather than generic systems and can help patients keep their sensitive information out of the formal system. It also allows healthcare workers to communicate with each other in more personalised, socially appropriate ways than formal systems allow. All of this can strengthen healthcare workers' relationships with community members and colleagues. However, these informal approaches can also replicate existing social hierarchies and deepen existing inequities among healthcare workers. Personal phone use costs healthcare workers money. This is a particular problem for lower-level healthcare workers and healthcare workers in low-income settings as they are likely to be paid less and may have less access to work phones or compensation. Out-of-hours use may also be more of a burden for lower-level healthcare workers, as they may find it harder to ignore calls when they are at home. Healthcare workers with poor access to electricity and the internet are less able to use informal mobile phone solutions, while healthcare workers who lack skills and training in how to appraise unendorsed online information are likely to struggle to identify trustworthy information. Informal digital channels can help healthcare workers expand their networks. But healthcare workers who rely on personal networks to seek help and advice are at a disadvantage if these networks are weak. Healthcare workers' use of their personal resources can also lead to problems for patients and can benefit some patients more than others. For instance, when healthcare workers store and share patient information on their personal phones, the confidentiality of this information may be broken. In addition, healthcare workers may decide to use their personal resources on some types of patients, but not others. Healthcare workers sometimes describe using their personal phones and their personal time and networks to help patients and clients whom they assess as being particularly in need. These decisions are likely to reflect their own values and ideas, for instance about social equity and patient 'worthiness'. But these may not necessarily reflect the goals, ideals and regulations of the formal healthcare system. Finally, informal mobile phone use plugs gaps in the system but can also weaken the system. The storing and sharing of information on personal phones and through informal channels can represent a 'shadow IT' (information technology) system where information about patient flow, logistics, etc., is not recorded in the formal system. Healthcare workers may also be more distracted at work, for instance, by calls from colleagues and family members or by social media use. Such challenges may be particularly difficult for weak healthcare systems. By finding their own informal solutions to workplace challenges, healthcare workers can be more efficient and more responsive to the needs of patients, colleagues and themselves. But these solutions also have several drawbacks. Efforts to strengthen formal health systems should consider how to retain the benefits of informal solutions and reduce their negative effects.

Glenton C ，Paulsen E ，Agarwal S ，Gopinathan U ，Johansen M ，Kyaddondo D ，Munabi-Babigumira S ，Nabukenya J ，Nakityo I ，Namaganda R ，Namitala J ，Neumark T ，Nsangi A ，Pakenham-Walsh NM ，Rashidian A ，Royston G ，Sewankambo N ，Tamrat T ，Lewin S ... -  《Cochrane Database of Systematic Reviews》

Supporting self-management with an internet intervention for low back pain in primary care: a RCT (SupportBack 2).

Geraghty AWA ，Becque T ，Roberts LC ，Hill J ，Foster NE ，Yardley L ，Stuart B ，Turner DA ，Griffiths G ，Webley F ，Durcan L ，Morgan A ，Hughes S ，Bathers S ，Butler-Walley S ，Wathall S ，Mansell G ，White M ，Davies F ，Little P ... -  《-》

Caregivers' Perspectives on Use of and Need for Driving Resources for Their Autistic Adolescent.

Autistic individuals who independently travel-or commute without companionship or supervision-report feeling more connected to social, education, and employment opportunities. Despite the potential for independent transportation to improve quality of life, little is known about what transportation-related resources, specifically driving focused ones, exist for autistic individuals or how they and their families find and use them. The objectives of this study were to characterize: (1) where and how families in the United States find driving-related resources for their autistic adolescents; (2) families' perceived availability and utility of identified resources; and (3) resources families believe should be developed. We conducted semi-structured interviews with 33 caregivers of autistic adolescents aged 16-24 years without an intellectual disability. We used a directed-content approach to develop and implement codes; three trained coders analyzed all transcripts (inter-rater reliability ≥0.8 for all codes). Members of the research team reviewed coded data and created code summaries, which were then developed and discussed by the larger research team to determine final consensus. Caregivers described a few existing resources that were helpful in guiding driving-related decisions. In addition, caregivers voiced that there were limited resources tailored to the unique needs that arise while teaching or learning how to drive, particularly ones that support their own and their adolescent's mental health. The limited resources and services identified as helpful-specifically support groups/perspectives of other families and specialized driving instructors-are seemingly difficult to find, costly, and/or perceived as having geographic- and time-related barriers. There is a critical need and opportunity for stakeholders of the autism community to both expand access to existing and develop novel driving-related resources for families with autistic adolescents, with a particular focus of supporting caregiver and adolescent mental health.

Sartin EB ，Webb MS ，Labows CG ，Myers RK ，Yerys BE ，McDonald CC ，Curry AE ... -  《-》

Can We Enhance Shared Decision-making for Periacetabular Osteotomy Surgery? A Qualitative Study of Patient Experiences.

Periacetabular osteotomy (PAO) surgery presents an opportunity for shared decision-making (SDM) and may be facilitated by decision-making tools. Currently, no diagnosis or treatment-specific decision-making tools exist for this patient population. Understanding patient PAO surgery decision-making experiences and processes would enable development of a treatment-specific decision-making tool and would help hip preservation surgeons with SDM practices. Qualitative methodology was used to address the following questions: (1) What were the information support needs of adult patients with hip dysplasia who decided to have PAO? (2) What was important to adult patients with hip dysplasia who decided to have PAO? (3) How did adult patients with hip dysplasia who have undergone PAO experience the surgical decision-making process? (4) What elements of SDM did adult patients with hip dysplasia experience with their surgeons when deciding to have PAO? Fifteen volunteer, English-speaking patients in the United States who had been diagnosed with hip dysplasia and who had undergone PAO surgery 6 to 12 months prior to the study were recruited through five PAO surgery Facebook support groups. Individuals were excluded if they had an underlying neuromuscular condition or other diagnosis related to nondevelopmental dysplasia of the hip or if they had a previous PAO surgery > 12 months before data collection. We used purposive sampling strategies to promote sample heterogeneity based on age and preoperative activity level, as these are characteristics that may impact decision-making. Participants were categorized into three age groups: 20 to 29 years, 30 to 39 years, and ≥ 40 years. Participants were also categorized as having "low activity," "moderate activity," or "high activity" preoperatively based on self-reported University of California Los Angeles (UCLA) Activity Scale scores. Participants were enrolled consecutively if they met the inclusion criteria and fulfilled one of our sampling categories; we had plans to enroll more participants if thematic saturation was not achieved through the first 15 interviews. Participants included 14 women and one man ranging in age from 23 to 48 years, and all had undergone PAO surgery for hip dysplasia 6 to 12 months prior to the interview. One-on-one semistructured interviews were conducted with each participant by a single interviewer through Zoom video conferencing using video and audio recording. Participants answered semistructured interview questions and provided verbal responses to survey questions so researchers could gain demographic information and details about their symptoms, diagnosis, and PAO surgery between June 2021 and August 2021. Quantitative survey data were analyzed using descriptive statistics. Qualitative data were analyzed by three researchers using principles of reflexive thematic analysis. Candidate themes were iteratively defined and redefined until central themes were developed that were distinctly different, yet centrally relevant, and answered the research questions. All codes that informed category and theme development were generated within the first six transcripts that were analyzed. The team felt that thematic saturation was established with the 15 interviews. The main information needs for adult patients with hip dysplasia included diagnosis and treatment-related information, as well as logistics related to surgery and recovery. Many patients described that their information needs were only partially met by their surgeon; most engaged in additional information-seeking from scientific research and online resources and relied on patient peers to meet information needs about the lived experience and logistics related to surgery and recovery. It was important to patients that PAO surgery could preserve their native hip or delay THA and that PAO surgery was likely to reduce their pain and improve function; decision-making was facilitated when patients were able to identify how the indications and goals of PAO surgery aligned with their own situation and goals for surgery. Patients' experiences with decision-making were more positive when information needs were met, when indications and goals for PAO surgery aligned with their personal values and goals, and when their preferred and actual decision-making roles aligned. Adult patients with hip dysplasia described high variability in the extent to which patients were invited to share personal preferences, values, and goals around PAO surgery and the extent to which preferred patient decision-making roles were assessed. We found that elements of SDM are not consistently integrated into hip preservation practice. The knowledge gained through this work about patient PAO surgery information needs, what matters to patients when deciding to have surgery, and their experiences with PAO surgery decision-making can inform future PAO surgery decision-making tool development. Future studies are needed to validate the findings of this study and to determine whether they are generalizable to adult patients with hip dysplasia with different demographic characteristics or to patients who do not participate in social media support groups. Surgeons should recognize that patients are likely to leave their office without their information needs being met. SDM strategies can promote more effective information exchanges in the clinic so surgeons can help patients identify their information needs, provide education and direction to accurate and reputable resources to meet those needs, and help patients appraise information they gather and apply it to their personal situation. Hip preservation surgeons can use the sample SDM script and checklist offered here to support adult patients with hip dysplasia who are making PAO surgery decisions until a future diagnosis and treatment-specific decision-making tool is available.

Muir NB ，Orlin M ，Rubertone P ，Williams G ... -  《-》