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Introduction: Midwives in an Australian birth unit undertook a project to develop a resource for women and their support person. The aim of this study was to explore how the women, support persons and midwives viewed the introduction of this resource designed to guide and support women in their choice of support person. Methods: A quantitative survey study was used to explore how three participant groups viewed the introduction of a support person information resource. A hospital designed survey was developed for women, support people and midwives. Data were analyzed using SPSS, version 26 and Braun and Clarke's guide for thematic analysis. Results: More than half (55%) of the midwives believed that the information resource presented influenced women's choice of support people during labor. Almost threequarters (72%) of the women did not change their choice of number of support people that they wanted during their labor. The majority (83%) of women would recommend the support person brochure to other women. The majority (83%) of support people stayed the entire duration of labor. Four themes were generated from open-ended questions: value of the information sheet, knowing how to be a support person, connecting midwives with being woman-centered, and choosing the support person. Conclusions: The availability of an information resource was of benefit for women, support people and midwives, contributing to women feeling more informed in choosing their support person. Midwives felt they had evidence to support conversations with women, contributing to the feeling of being woman-centered. Support people had increased confidence. [ABSTRACT FROM AUTHOR]

Abstract Background In Western countries, it is common practice for a woman to be supported by a trusted person during childbirth, usually the other parent. Numerous studies have shown that this has a positive effect both on the woman’s satisfaction with the birth process and on physical outcomes. However, there is little research on the birth experience of partners and their wellbeing. The aim of this review is to summarise the existing literature on partner experience, consider its quality and identify the underlying themes. Methods Both a systematic literature search in three databases and a manual search were conducted, for qualitative, quantitative, and mixed-methods studies from Western countries examining the experiences of partners present at a birth. Results A total of 35 studies were included. Only one study included same-sex partners (the other studies addressed fathers’ experiences only) and only one validated questionnaire examining partners’ birth experiences was identified. Four major themes were found to influence partners’ birth experiences: (1) intense feelings, (2) role of support, (3) staff support, and (4) becoming a father. Conclusions Partners may feel very vulnerable and stressed in this unfamiliar situation. They need emotional and informal support from staff, want to be actively involved, and play an important role for the birthing woman. To promote good attachment for parents, systematic exploration of the needs of partners is essential for a positive birth experience. Because of the diversity of family constellations, all partners should be included in further studies, especially same-sex partners.

Carers of people with dementia experience significant physical, emotional, and social burdens. Needs assessment can provide important information to assist services in providing support to carers to reduce these burdens. However, few studies have examined the prevalence of unmet needs experienced by carers of people with dementia using a quantitative instrument. This study aimed to examine the prevalence and type of unmet needs experienced by carers of people with dementia in Australia. This was a cross-sectional survey of carers providing support to community-dwelling individuals living with dementia. Carers were recruited through geriatric clinics, aged care providers, support services and community organisations. Consenting carers completed a survey including an 80-item study-specific unmet needs instrument for carers (UNI-C) and sociodemographic characteristics. Descriptive statistics were used to identify the most prevalent unmet needs reported by carers. A total of 169 carers (response rate 47%) completed the survey. Most (87%) carers reported at least one unmet need. Carers reported a median of 16.0 (IQR = 24.0; max = 58) out of a possible 80 unmet needs. The most frequently endorsed unmet needs spanned a range of areas including emotional wellbeing, accessing health and aged care services, managing apathy, and finding information. This study highlighted that a large proportion of carers experience unmet needs associated with caring for someone with dementia. Developing and rigorously testing interventions to meet carers' commonly reported unmet needs are warranted. Supplemental data for this article is available online at https://doi.org/10.1080/13607863.2022.2053833. [ABSTRACT FROM AUTHOR]

Objective: To explore whether family-centered communication impacts decisions and optimizes patient-companion-provider consultations.Methods: A parallel, two-arm randomized controlled trial was conducted with 108 participants acting as patients with inflammatory arthritis or companions. Pairs attended a mock consultation where a physician explained the change from a bio-originator to a biosimilar using family-centered or patient-only communication. Participants reported their willingness to transition, risk perceptions, understanding and social support, and completed various scales including the Patient Perception Scale. Interviews helped understand perceptions towards the consultation.Results: Family-centered communication did not impact willingness to change or cognitive risk perceptions compared to patient-only communication. However, it improved emotional risk perceptions (p = 0.047, Cohen's d=.55) and satisfaction with communication (p = 0.015, Cohen's d=.71). Feeling the explanation was reassuring was associated with less worry (p = 0.004). Receiving emotional support (p = 0.014) and companions asking fewer questions (p = 0.046) were associated with higher recall. The intervention improved companion involvement (p < 0.001, Cohen's d= 1.23) and support (p = 0.002, Cohen's d=.86). Interviews showed that encouraging questions, inclusive body language, and acknowledging companions facilitated involvement.Conclusion: Family-centered communication augments patient-companion-provider encounters but does not influence willingness to change treatment.Practice Implications: Practitioners can use family-centered communication when discussing biosimilars but should provide reassurance, encourage emotional support, and summarize key points to improve understanding. [ABSTRACT FROM AUTHOR]

Patient perceptions influence biosimilar uptake in non-mandatory transitions. Companions (support people) are often actively involved in the patient's medical journey and are likely to have unique perceptions of biosimilars, which may shape patient attitudes. This study explores the congruence between patient and companion perceptions towards biosimilars and their information needs. Patients taking bio-originators for rheumatic diseases (59% for rheumatoid arthritis) and their companions received an explanation about biosimilars. Participants (N = 78) completed questionnaires assessing their familiarity with biosimilars, perceptions, concerns, and benefits of being accompanied. Contingency tables and paired sample t-tests were used to explore differences in familiarity, confidence in knowledge, and perceptions. Intra-class correlation coefficients were calculated to assess the degree of congruence for perceptions towards biosimilars. Companions were significantly less familiar with biosimilars (p = 0.014, Cramer's V = 0.28) and reported lower confidence in their knowledge (p = 0.006, Cohen's d = 0.47) than patients. Companions and patients had moderate to good congruency for perceptions toward confidence in biosimilar use and safety, efficacy, and side-effect expectations (intra-class correlation coefficients ranging from 0.75 to 0.81). Companions and patients were most concerned about safety and effectiveness. Companions also reported concerns about cost savings driving the transition, while patients had concerns about uncertainty and testing. Patients reported the ability for discussion, improved understanding, and validation as benefits of being accompanied. Companions and patients have similar levels of perceptions and expectations towards biosimilars but report some unique information needs. Future educational interventions should involve companions and address their concerns to help improve biosimilar acceptance. [ABSTRACT FROM AUTHOR]

Background: In Western countries, it is common practice for a woman to be supported by a trusted person during childbirth, usually the other parent. Numerous studies have shown that this has a positive effect both on the woman's satisfaction with the birth process and on physical outcomes. However, there is little research on the birth experience of partners and their wellbeing. The aim of this review is to summarise the existing literature on partner experience, consider its quality and identify the underlying themes.Methods: Both a systematic literature search in three databases and a manual search were conducted, for qualitative, quantitative, and mixed-methods studies from Western countries examining the experiences of partners present at a birth.Results: A total of 35 studies were included. Only one study included same-sex partners (the other studies addressed fathers' experiences only) and only one validated questionnaire examining partners' birth experiences was identified. Four major themes were found to influence partners' birth experiences: (1) intense feelings, (2) role of support, (3) staff support, and (4) becoming a father.Conclusions: Partners may feel very vulnerable and stressed in this unfamiliar situation. They need emotional and informal support from staff, want to be actively involved, and play an important role for the birthing woman. To promote good attachment for parents, systematic exploration of the needs of partners is essential for a positive birth experience. Because of the diversity of family constellations, all partners should be included in further studies, especially same-sex partners. [ABSTRACT FROM AUTHOR]

Background: Involving patients in treatment decisions is commonplace in healthcare, and patients are frequently accompanied by a companion (support person). Companions are often actively involved in medical consultations, yet their impact on decisions to change medications is unknown.Purpose: This study examines the influence of companions on a patient's decision to transition from their bio-originator therapy to a biosimilar.Methods: A parallel, two-arm randomized controlled trial was conducted with 79 patients taking a bio-originator for rheumatic diseases who regularly attend clinic with a companion. Patients were randomized to receive an explanation about a hypothetical transition to a biosimilar alone or with their companion. Patients reported willingness to transition, risk perceptions, difficulty understanding, social support, and completed the Decisional Conflict Scale and Satisfaction with Decision Scale.Results: Companions did not influence decisions to transition to biosimilars or cognitive and affective risk perceptions. Accompanied patients reported more difficulty understanding the explanation (p = .006, Cohen's d = .64) but thought it was more important to receive information with companions (p = .023, Cohen's d = -.52). Companions did not impact decision satisfaction or decisional conflict. Receiving emotional, but not practical support, was associated with less decisional conflict in accompanied patients (p = .038, r2 = 0.20).Conclusions: The presence of companions does not seem to influence risk perceptions or decisions about transitioning to biosimilars. Companions, however, impact the patient's reporting of their ability to understand treatment explanations. Providers should check understanding in all patients but may need to provide additional time or educational resources to accompanied patients and companions.Trial Registration: Australian New Zealand Clinical Trial Registry: ACTRN12619001435178. [ABSTRACT FROM AUTHOR]

Health care providers routinely advise cancer patients to involve support persons in oncology care to fulfill critical support roles. This qualitative descriptive study explored alignment of triadic perceptions of support person involvement in oncology treatment visits and cancer-related care from the perspectives of patients with gynecologic cancer (n = 18), regular visit-attending support people (n = 16), and health care providers (n = 10), including oncologists, nurses, and medical assistants. Semi-structured interviews (N = 44) captured perceptions of facilitation and interference of support persons' roles within and outside appointments with oncology providers. Thematic analyses revealed alignment and divergence regarding support persons' instrumental, informational, and emotional support behaviors. Perspectives aligned regarding what support functions companions provide. However, patients and support persons emphasized the significance of instrumental followed by informational and emotional support, whereas oncology providers highlighted informational, followed by emotional and instrumental support. Discussion provides insight into each role's perspective in the triad. [ABSTRACT FROM AUTHOR]

Objective: To obtain insights into the effects of surgical training on the well-being of support persons. Summary Background Data: Surgical trainee wellness is a critical priority among surgical educators and leaders. The impact of surgical training on the wellness of loved ones who support trainees has not been previously studied. Methods: This qualitative study employs semi-structured interviews of 32 support persons of surgical trainees at a single tertiary care center with multiple surgical specialty training programs. Interviews focused on perceptions about supporting a surgical trainee. Transcripts underwent thematic analysis with semantic and conceptual coding. Key themes regarding the effects that caring for a trainee has on support persons are reported. Results: Three key themes were identified: (1) Sacrifices—support persons report significant tangible and intangible sacrifices, (2) Delaying life—life is placed on hold to prioritize training, and (3) A disconnect—there is a disconnect and a lack of recognition of support person needs that require greater awareness and targeted interventions. Conclusions: The impact of surgical training can extend beyond trainees and can affect the wellness of their support persons who endure the effects of training alongside trainees. Programs should be aware of these effects and develop meaningful strategies to aid trainees and their support persons. [ABSTRACT FROM AUTHOR]

Le respect de l'autonomie du patient est essentiel. Il peut rédiger des directives anticipées en vue d'une situation où il ne pourrait plus s'exprimer. Actuellement, peu de personnes les ont rédigées. Nous avons réalisé une étude sur la faisabilité de la mise en place systématique des directives anticipées chez des patients hémodialysés. Cette étude prospective monocentrique a été menée dans un centre d'hémodialyse ambulatoire en 4 étapes : un questionnaire remis aux soignants ; la sélection puis l'information des patients ; la rédaction assistée des directives anticipées par les patients intéressés ; l'évaluation des causes de non-participation. Les soignants connaissent mal le dispositif et ont des réticences : le manque de connaissances médicales du patient, l'angoisse générée par la discussion sur la fin de vie. Cinquante-six patients (51,6 %) ont été inclus et ont reçu les informations. Neuf d'entre eux ont souhaité rédiger leurs directives anticipées sur un formulaire adapté, huit les ont finalisées (7,4 % de la population initiale). La majorité souhaitait une limitation thérapeutique. Vingt-neuf patients ayant reçu l'information n'ont pas souhaité les rédiger, les raisons étant : ils se sentent bien ou pensent que leurs proches prendraient les bonnes décisions. Dix-huit patients sont sortis du centre pendant l'étude. Le développement des directives anticipées nécessite l'information et la formation des soignants, ainsi que l'accompagnement des patients. Peu de patients sont allés au bout de la démarche. La limite de la « compétence » du patient à décider pour lui est difficile à définir. Le rôle du médecin est central pour l'accompagner. Respect of patient's autonomy is essential. So that patients are able to write their advance directives in case of a situation where they are unable to make decisions for themselves. Currently, few people have written advance directives. We studied the feasibility of a systematic implementation of advance directives in haemodialysis patients. This prospective, single-center study was conducted in an ambulatory hemodialysis center. There were 4 steps: caregivers survey about advance directives; selection of patients and information about advance directives; writing advance directives with the interested patients; and finally, non-participation causes assessment of the other informed patients. Caregivers are not comfortable with advance directives, and have reluctances: the patient's lack of medical knowledge; the anxiety generated by end-of-life talk. Fifty-six patients (51.6%) were included and received the information. Nine of them wanted to write their advance directives on a suitable form. Eight finalised them (7.4% of the initial population). The majority wanted a therapeutic limitation. Twenty-nine patients, who have received the information about advance directives, didn't want to write them, the main reason was that they felt healthy or that they thought that their relatives would take the right decisions. Eighteen patients left the centre during the study. The development of advance directives requires information and training of caregivers and patient support. Few patients went to the end of the process. The limit of the patient's ability to decide for himself is difficult to define. The role of the doctor is central to accompany the patient during this process. [ABSTRACT FROM AUTHOR]

Introduction: People with intellectual disability (ID) experience barriers in accessing mental health care. Recommendations have been made to implement specialist intellectual disability mental health (IDMH) services in Australia. However, there is limited evidence to inform service development. Method: Family members and support persons of people with ID (n = 42) completed an on-line survey about support for, and operation of, a tertiary IDMH service in New South Wales, Australia. Results: Participants agreed that a tertiary IDMH service would assist in meeting the needs of people with ID. Key service features included that it be delivered within the public health system, by psychiatrists and psychologists, provide face-to-face clinical contact and advice. Key service areas included behaviors of concern, self-harm, assessments, and interventions. Conclusion: These findings suggest support for a tertiary IDMH service and how it could be delivered. Further research is required from the perspective of people with ID, mental health staff, and clinical experts. [ABSTRACT FROM AUTHOR]

Background: Mobile health (mHealth) has the potential to radically improve health behaviors and quality of life; however, there are still key gaps in understanding how to optimize mHealth engagement. Most engagement research reports only on system use without consideration of whether the user is reflecting on the content cognitively. Although interactions with mHealth are critical, cognitive investment may also be important for meaningful behavior change. Notably, content that is designed to request too much reflection could result in users' disengagement. Understanding how to strike the balance between response burden and reflection burden has critical implications for achieving effective engagement to impact intended outcomes., Objective: In this observational study, we sought to understand the interplay between response burden and reflection burden and how they impact mHealth engagement. Specifically, we explored how varying the response and reflection burdens of mHealth content would impact users' text message response rates in an mHealth intervention., Methods: We recruited support persons of people with diabetes for a randomized controlled trial that evaluated an mHealth intervention for diabetes management. Support person participants assigned to the intervention (n=148) completed a survey and received text messages for 9 months. During the 2-year randomized controlled trial, we sent 4 versions of a weekly, two-way text message that varied in both reflection burden (level of cognitive reflection requested relative to that of other messages) and response burden (level of information requested for the response relative to that of other messages). We quantified engagement by using participant-level response rates. We compared the odds of responding to each text and used Poisson regression to estimate associations between participant characteristics and response rates., Results: The texts requesting the most reflection had the lowest response rates regardless of response burden (high reflection and low response burdens: median 10%, IQR 0%-40%; high reflection and high response burdens: median 23%, IQR 0%-51%). The response rate was highest for the text requesting the least reflection (low reflection and low response burdens: median 90%, IQR 61%-100%) yet still relatively high for the text requesting medium reflection (medium reflection and low response burdens: median 75%, IQR 38%-96%). Lower odds of responding were associated with higher reflection burden (P<.001). Younger participants and participants who had a lower socioeconomic status had lower response rates to texts with more reflection burden, relative to those of their counterparts (all P values were <.05)., Conclusions: As reflection burden increased, engagement decreased, and we found more disparities in engagement across participants' characteristics. Content encouraging moderate levels of reflection may be ideal for achieving both cognitive investment and system use. Our findings provide insights into mHealth design and the optimization of both engagement and effectiveness., (© Lyndsay A Nelson, Andrew J Spieker, Lauren M LeStourgeon, Robert A Greevy Jr, Samuel Molli, McKenzie K Roddy, Lindsay S Mayberry. Originally published in JMIR mHealth and uHealth (https://mhealth.jmir.org).)

Type 2 diabetes self-management occurs within social contexts. We sought to test the effects of Family/friend Activation to Motivate Self-care (FAMS), a self-care support intervention delivered via mobile phones, on psychosocial outcomes for persons with diabetes (PWDs) and their support persons. PWDs had the option to enroll with a friend/family member as a support person in a 15-month RCT to evaluate FAMS versus enhanced usual care. FAMS included 9 months of monthly phone coaching and text message support for PWDs, and text message support for enrolled support persons. PWDs (N = 329) were 52% male and 39% reported minoritized race or ethnicity ; 50% enrolled with elevated diabetes distress. Support persons (N = 294) were 26% male and 33% reported minoritized race or ethnicity. FAMS improved PWDs' diabetes distress (d = -0.19) and global well-being (d = 0.21) during the intervention, with patterns of larger effects among minoritized groups. Post-intervention (9-month) and sustained (15-month) improvements were driven by changes in PWDs' self-efficacy, self-care behaviors, and autonomy support. Among support persons, FAMS improved helpful involvement without increasing burden or harmful involvement. FAMS improved PWDs' psychosocial well-being, with post-intervention and sustained improvements driven by improved self-efficacy, self-care, and autonomy support. Support persons increased helpful involvement without adverse effects. [ABSTRACT FROM AUTHOR]

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The option of having a support person available in industrial disputes and disciplinary hearings has become a well-accepted practice. However, the implications of having a third party present and the potential for inhibition of disclosure in the forensic psychiatric/psychological assessment has not been examined in more than a limited fashion. Expectations of claimants and lawyers that the presence of a support person is a right and assumptions that altering the usual one-to-one dynamic has no influence are challenged in this experience-based commentary. Instances in which the support person may be a “help” or a “hindrance” are outlined, as are recommendations for managing some of the common pitfalls in conducting the evaluation in the presence of another party. An argument is also made for heightened awareness on the part of solicitors about choosing an appropriate support person. [ABSTRACT FROM AUTHOR]

Objective To compare the prevalence of anxiety, depression, and stress among rural and urban support persons of haematological cancer survivors and explore factors associated with having one or more of these outcomes. Methods Haematological cancer survivors were identified via 1 of 5 state-based cancer registries and invited to take part in a survey. Those who agreed were asked to pass on a questionnaire package to their support person. Measures included the Depression, Anxiety, and Stress Scale, Support Persons' Unmet Need Survey, and sociodemographic questions. Results Nine-hundred and eighty-nine (66%) participating survivors had a participating support person. There were no significant differences in the proportion of urban versus rural support persons who reported elevated levels of depression (21% vs 23%), anxiety (16% vs 17%), or stress (16% vs 20%), P > .05. Odds of reporting at least 1 indicator of psychological morbidity increased by 10% to 17% for each additional high or very high unmet need and by 2% for those who had relocated from their usual place of residence for the survivor to receive treatment and was decreased by 5% to 54% for those support persons who reported that they had no chronic health conditions. Conclusions Psychological outcomes for rural and urban support persons are similar. Those who have poor health, have had to relocate, and who have multiple unmet needs are particularly vulnerable to poor psychological outcomes. These factors should be assessed to enable early intervention for those at risk of poor outcomes. [ABSTRACT FROM AUTHOR]

Objectives: to describe the monthly trend of breastfeeding during hospitalization and the presence of companion of woman's choice during labour and birth, and the key regional responders' perspective of homogeneity/heterogeneity of the presence of the support person, before, during (February-May 2020), and after the first COVID-19 pandemic wave in a few Italian Regions., Design: two-phase study., Setting and Participants: data from the italian birth certificate of six Italian Regions between 01.01.2019 and 31.03.2021 were analysed. Semi-structured interviews were conducted with the key regional respondents., Main Outcome Measures: the frequency distributions of breastfeeding and the presence of companion of woman's choice were calculated as a whole and for each Region., Results: the infant feeding practices experienced smaller changes during COVID-19 pandemic than the presence of the companion of woman's choice during labour and birth, from January 2019 to March 2021. The highest value of exclusive breastfeeding was recorded in September 2020 (72.1%; 95%CI 71.3-72.8) in all Regions, while the lowest was recorded in March 2021 (62.5%; 95%CI 61.5-63.4). The presence of companion of woman's choice during labour and birth decreased during the pandemic and did not return to pre-pandemic levels. The highest value of presence of father during birth was recorded in March 2019 (59.0%; 95%CI 58.2-59.8), while the lowest in April 2020 (50.0%; 95%CI 49.1-50.8). The main emerging themes were: the existence of national, regional and local indications; the facilitators (e.g., Baby-Friendly Hospital Initiative implementation, strong motivation of the staff) and the critical points (e.g., inadequate analysis of the clinical-epidemiological context, inhomogeneous indications) of management of the support person presence., Conclusions: the emergency has changed the provision of health services that not always guaranteed the application of best practices. It would be desirable to work for assessing the appropriateness of the birth certificate data to collect more accurate information and to provide clinical recommendations.

Caregivers of individuals with chronic obstructive pulmonary disease (COPD) experience significant burden. To develop effective interventions to support this vulnerable group, it is necessary to understand how this burden varies as a function of patient well-being and across the illness trajectory. This systematic review aimed to identify the number and type of data-based publications exploring the burden and unmet needs of caregivers of individuals with COPD. Medline, Embase, PsycINFO and Cochrane databases were searched for studies published between January 2000 and February 2014. Studies were eligible if they were quantitative studies examining unmet needs of, or burden on, adult caregivers of individuals with COPD. Eligible papers were categorised according to (i) type (i.e. descriptive, measurement and intervention studies); (ii) whether they measured associations between patient and caregiver burden and (iii) whether they measured caregiver burden longitudinally. Twenty-seven data-based papers met criteria for inclusion. There was a significant increase in the total number of publications over time. The majority of publications were descriptive studies (n = 25), with one measurement and one intervention study identified. Fourteen descriptive studies measured the relationship between patient or caregiver factors and caregiver burden. Only two studies measured caregiver burden over time. There are a number of gaps in the body of research examining burden and unmet needs of caregivers of individuals with COPD that preclude the development of effective interventions for this population. Greater research effort should be directed towards identifying rigorous measurement tools which more accurately characterise caregiver burden, so that evidence-based interventions can be developed. [ABSTRACT FROM PUBLISHER]

Résumé Adoptée à l’issue d’un cheminement législatif tumultueux, la loi du 2 février 2016 complète la loi « Léonetti » du 22 avril 2005. Sans aller jusqu’à légaliser une aide active à mourir, cette loi comporte néanmoins quelques évolutions notables. Elle accroît l’autonomie du patient, notamment par la consécration de directives anticipées impératives et le renforcement du droit au refus de soins. Elle précise le rôle de la personne de confiance dans le processus de décision et étend le champ d’application de la procédure collégiale. Enfin, elle reconnaît un droit à la prise en charge de la souffrance et diversifie les modalités de soins palliatifs, en particulier par l’introduction de la sédation profonde et continue jusqu’au décès. Certains points de la loi relatifs au régime des directives ou à la procédure entourant la décision de sédation sont cependant amenés à être précisés par voie réglementaire. Adopted after a tumultuous legislative process, the Act of 2 February 2016 complete the “Leonetti” law of April 22, 2005. Without going to legalize active help to die, this law does include some notable developments. It increases patient autonomy, including the consecration of mandatory advance directives and extends the right to refuse care. It specifies the role of the support person in the decision process and extends the scope of the collegiate procedure. Finally, it recognizes a right to care for the suffering and diversified palliative care modalities, particularly through the introduction of continuous deep sedation until death. Some aspects of the law relating to the mandatory advance directives or the process of sedation are however asked to be specified by regulation. [ABSTRACT FROM AUTHOR]