Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial support/palliative care, increasing their risk for negative psychosocial outcomes. Online health communities (OHCs) have been recommended for AYAs as part of palliative care support programs; however, we lack research investigating palliative care programs targeting AYAs’ psychosocial support needs that are delivered virtually and able to engage with patients both during and beyond inpatient admissions. Streetlight is a palliative care program designed for chronically ill AYAs. Developed as a complementary component that extends beyond the hospital setting, Streetlight Gaming and Online Team (SGOT) is an OHC aimed at facilitating social support to influence psychosocial outcomes. We investigated the existence and enactment of social support among chronically ill AYAs using SGOT and compared this to existing online social support categories to determine which support types are present within SGOT.

This was a qualitative phenomenological study. We performed deductive thematic analysis based on existing online social support categories. Nine semi-structured interviews were conducted with SGOT participants.

Social companionship/belonging, esteem/emotional, and informational support were most prevalent within SGOT. Thirteen subthemes emerged representing how social support impacted AYAs’ psychosocial wellbeing. Notably, coping with/managing illness, sense of community and normalcy, recommendations and advice, and shared interests unrelated to illnesses were subthemes that resonated with AYAs and added value to their experiences.

SGOT is an impactful OHC used to meet AYAs’ social support needs. What makes SGOT especially unique is its virtual delivery, wherein AYAs can conveniently maintain beneficial relationships with other chronically ill same-aged peers. AYAs need spaces where they can feel normal and access continuous support, both within and beyond inpatient admissions. This study enhances our understanding of online AYA psychosocial support programs. Findings can be used by healthcare professionals to implement similar palliative care and psychosocial support programs.

Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial care. AYAs who receive palliative and psychosocial care experience numerous benefits from these services. However, we still lack research investigating age-appropriate programs targeting AYAs’ psychosocial needs that are delivered virtually and extend beyond the hospital setting. Streetlight is a palliative care program designed for chronically ill AYAs that offers the Streetlight Gaming League (SGL), an online health community (OHC) combining peer-based support, online gaming, and community events. We evaluated the usefulness, acceptability, and potential effectiveness of SGL through an assessment of chronically ill AYAs’ lived experiences.

We used a qualitative evaluation approach grounded in hermeneutic phenomenology. Questionnaires and interviews were conducted with 9 chronically ill AYAs to elicit in-depth accounts of their lived experiences of using SGL. Descriptive statistical analysis was performed on questionnaire data. Phenomenological data analysis, informed by hermeneutic analysis, was used to analyze interviews.

AYAs reported positive experiences with SGL and valued the ability to engage in various content while having few participation expectations. They also described psychosocial benefits, including reprieve from illness, sense of community, and solidarity through mutual understandings and shared experiences.

Findings highlight the usefulness and acceptability of a virtual palliative psychosocial care program for chronically ill AYAs. Findings also suggest the effectiveness of SGL and support using an OHC to meet the psychosocial needs of AYAs. This study can guide future programming and implementation of online palliative psychosocial care programs in other hospital settings, resulting in similar beneficial and meaningful experiences.

Following a terrorist attack, responses to a psychosocial disaster range from low-intensity initiatives to high-intensity treatment. Some studies described post-disaster psychosocial services and planning across Europe. However, little is known about the psychosocial support (PS) actually delivered after terrorist attacks.

This study assesses prevalence and the factors associated with not receiving short-term PS among terror-exposed people with probable mental health disorders following the January 2015 terrorist attacks in France.

This study used data from the first wave of a longitudinal survey conducted six months after the attacks. Prevalence and factors associated with not receiving PS were described in the immediate period (48 hours), the early post-immediate period (48 hours-one week), and the medium-term (over one week) using a robust Poisson regression for each of the three periods.

Nearly one-half of the participants (N = 189) did not receive PS in any period (46.6% in the immediate period, 45.5% in the early post-immediate period, and 54.5% in the medium-term). In each period, not receiving PS was associated with not being very close to the attack sites. Not receiving PS in the immediate period was also associated with being a direct witness (DW) rather than being directly threatened (DT) and not having support in daily life; in the early post-immediate period, not receiving PS was associated with not having a peri-traumatic dissociation experience and being followed for a psychological problem before the attacks; and in the medium-term period, it was associated with perceived social isolation.

The characteristics of the terror exposure and social support seemed to influence presence or absence of PS after the terrorist attack and highlight the need for strategies to reach out to people regardless of the type of exposure.

It is widely acknowledged that co-occurring symptoms in patients with a psychosocial and spiritual aspects should also be considered. However, this multidimensional approach is difficult to integrate into daily practice, especially for generalist clinicians not specialized in palliative care. We aimed to identify the barriers and facilitators to multidimensional symptom management.

Focus group meetings were conducted with the following stakeholders: (1) patient representatives, (2) generalist community nurses, (3) generalist hospital nurses, (4) general practitioners, (5) generalist hospital physicians, and (6) palliative care specialists. Audiotapes were transcribed verbatim and thematically analyzed.

Fifty-one participants (6–12 per group) reported barriers and facilitators with 3 main themes: multidimensional symptom assessment, initiating management of nonphysical problems, and multidisciplinary collaboration. As barriers, generalist clinicians and palliative care specialists reported that generalist clinicians often lack the communication skills to address nonphysical problems and are unaware of available resources for multidimensional symptom management. Palliative care specialists felt that generalist clinicians may be unaware that assessing nonphysical problems is important and focus on pharmacological interventions. Generalist nurses and palliative care specialists indicated that hierarchical difficulties between them and generalist physicians are barriers to multidisciplinary collaboration. Reported facilitators included using symptom assessment scales and standardized questions on nonphysical problems.

Generalist clinicians can be supported by improving their communication skills, increasing their awareness of available resources for multidimensional symptom management, and by using a standardized approach to assess all 4 dimensions of palliative care.

Therapeutic radiographers are the first point of contact for cancer patients undergoing radiotherapy treatment and therefore have an important role in providing both physical and psychosocial support to these patients. This study aimed to evaluate therapeutic radiographers’ perception about their role in identifying and providing psychosocial support for patients receiving RT treatment.

The study used a cross-sectional, prospective research design. A self-designed questionnaire was distributed to all therapeutic radiographers (n = 26) working at a radiotherapy department in Malta.

A total of 21 therapeutic radiographers completed the questionnaire. All participants felt that the provision of psychological care was an important part of their role as therapeutic radiographers. The majority of the participants reported having the most confidence in giving treatment-related symptoms advice rather than psychological support. The most common barrier to providing psychological support was lack of training (95·2%), followed by the lack of an appropriate screening tool (85·7%), availability of private space to talk to patients (76·2%) and a lack of knowledge (61·9%).

While most therapeutic radiographers believed that providing psychosocial support was an important aspect of their role, several barriers prevented them from fulfilling this role. Training, the introduction of a psychosocial screening tool and clear referral processes are recommended to improve radiotherapy service.

The consensus is that psychological first aid is a practical, early psychosocial intervention to mitigate the distress caused by disasters. This review aimed to investigate PFA training’s efficacy in the existing studies and evaluate these programs’ impact on trainees.

MEDLINE (National Library of Medicine, Bethesda, MD), EMBASE (Elsevier, Amsterdam, Netherlands), PsycInfo (American Psychological Association, Washington, DC), and Cochrane Library (John Wiley & Sons, Hobken, NJ, USA) were searched on August 1, 2020 without language and date limitation. The Cochrane Risk of Bias tool for randomized controlled trials and the Risk of Bias in Non-Randomized Studies - of Interventions (ROBINS-I) (Cochrane, London, UK) were used to assess the quality of the studies included. SPSS (IBM Corp., Endicott, NY, USA) was used for descriptive, comparative, and correlational summaries.

From 376 articles, only 9 studies met the criteria and were included after screening. The most common outcome was knowledge improvement, followed by increased confidence, and competence. Other outcomes encompassed Attitude, preparedness, and therapeutic engagement.

PFA is the most suggested early intervention aftermath and could be acquired by professionals and non-professionals in the mental health area. Nonetheless, to obtain the desired outcome, PFA training programs’ quality is vital. This review revealed that most training programs’ duration was short, without scenario-based interactions and post-training supervisions. More controlled trials are required to measure the effectiveness of PFA training on the providers.

In the aftermath of the devastating 2015 earthquakes in Nepal, three non-governmental organizations collaborated to develop a program responding to the immediate mental health and psychosocial support (MHPSS) needs in three severely affected districts: Dhading, Gorkha, and Sindhuli. The program was implemented between April 2015 and February 2017 and aimed to (i) strengthen health worker capacity to provide integrated MHPSS services; and (ii) increase access to mental health services. This paper describes the program's implementation and the results of a pragmatic evaluation of the program's overall reach, effectiveness, and lessons learned.

The mixed-methods evaluation used routine program data, quantitative data from pre- and post-tests conducted with trainees and service users, and qualitative data from stakeholder interviews and focus group discussions.

A total of 1041 health workers received MHPSS training and supervision. Participants demonstrated significant improvements in skills, knowledge, and self-rated perceived competency. Trainees went on to provide MHPSS services to 3422 people. The most commonly identified presenting problems were epilepsy (29%) and depression (26%). A total of 67% of service users reported being ‘completely satisfied’ with the services received and 83% of those experiencing severe functional impairments on enrollment demonstrated improvement after receiving services.

Despite operational challenges, the program successfully engaged both laypeople and health workers to provide MHPSS in the aftermath of the crisis. Lessons learned can inform the planning and implementation of future training and integration programs to provide large-scale MHPSS efforts in humanitarian settings.

The objective of this study was to assess the psychosocial distress and associated factors in advanced cancer patients consulting at the outpatient Palliative Care Unit at the National Cancer Institute in Mexico City.

A retrospective study was conducted using electronic records (June 2015 to December 2016).

A total of 646 patients with advanced cancer during their first visit to the outpatient palliative care unit at the National Cancer Institute in Mexico were evaluated using the Distress Thermometer (DT) and ECOG performance status scores.

Overall, 62% were women, with a median age of 57 years, and married (54.8%). The most frequent diagnosis was gastrointestinal cancer (28.6%), and 38.9% had a functional performance status of ECOG 2. The median DT score was 4.0 (IQR = 2–6), with 56% reporting DT scores ≥4. The three most frequent problems ≥4 were sadness (82.6%), feeling weak (81.2%), worry (79.6%), and <4 were feeling weak (57.7%), fatigue (55.6%), and financial security (52.1%). The variables associated with distress according to the multiple logistic regression analysis were problems with housing (OR = 2.661, 95% CI = 1.538–4.602), sadness (OR = 2.533, 95% CI = 1.615–3.973), transportation (OR = 1.732, 95% CI = 1.157–2.591), eating (OR = 1.626, 95% CI = 1.093–2.417), nervousness (OR = 1.547, 95% CI = 1.014–2.360), and sleep (OR = 1.469, 95% CI = 1.980–2.203).

The principal factors were related to distress levels, housing problems, transportation issues, and emotional problems such as sadness, nervousness, lower functionality, and younger age. Therefore, psychosocial support is of considerable relevance in palliative care. These findings will help clinicians understand the distress of patients with advanced cancer in palliative care in Latin American countries.

Home care for hematopoietic stem cell transplants (HSCTs), an alternative to traditional inpatient or outpatient recovery programs, is safe and feasible but may place greater demand on full-time caregivers. The goal of this study was to characterize the experiences of caregivers in a newly piloted homebound HSCT program as a means of identifying unmet needs and ensuring adequate support.

A qualitative approach was utilized. Participants created self-recorded video diaries guided by open-ended prompts at designated time points throughout recovery and participated in a single follow-up interview within four weeks post-discharge. Diaries and interviews were transcribed, analyzed, and coded to identify recurrent ideas and themes.

Data were collected from 12 caregivers of homebound HSCT patients. Thematic content analysis yielded four themes: facilitators (external support, sense of normalcy, and patient wellness), challenges (difficulties with transplant care instructions, managing the patient's physical and emotional health, and caregiver psychological distress), roles in recovery (caregiving responsibilities), and analysis of homebound experience (positive outcomes and suggestions for improvement).

Caregivers perceived the homebound program as offering high-quality medical care in a setting that provided a sense of normalcy, privacy, and greater level of oversight. Unmet needs included lacking preparedness in completing nursing responsibilities and handling caregiver and patient distress. While the homebound program was preferred to routine hospital care, psychotherapeutic support and programming to improve caregiver preparedness in a homebound HSCT recovery program is indicated.

In emergencies and resource-poor settings, non-specialists are increasingly being trained to provide psychosocial support to people in distress, with Psychological First Aid (PFA) one of the most widely-used approaches. This paper considers the effectiveness of short training programmes to equip volunteers to provide psychosocial support in emergencies, focusing particularly on whether the PFA training provided during the Ebola outbreak enabled non-specialists to incorporate the key principles into their practice.

Semi-structured interviews were conducted in Sierra Leone and Liberia with 24 PFA trainers; 36 individuals who participated in PFA training; and 12 key informants involved in planning and implementing the PFA roll-out.

Findings indicate that many PFA training-of-trainers were short and rarely included content designed to develop training skills. As a result, the PFA training delivered was of variable quality. PFA providers had a good understanding of active listening, but responses to a person in distress were less consistent with the guidance in the PFA training or with the principles of effective interventions outlined by Hobfoll et al.

There are advantages to training non-specialists to provide psychosocial support during emergencies, and PFA has all the elements of an effective approach. However, the very short training programmes which have been used to train non-specialists in PFA might be appropriate for participants who already bring a set of relevant skills to the training, but for others it is insufficient. Government/NGO standardisation of PFA training and integration in national emergency response structures and systems could strengthen in-country capacity.

Pediatric bone marrow transplants represent a medically stressful, potentially traumatic experience for children and caregivers, and psychological support for parental caregivers is paramount to their long-term well-being. However, many medical centers do not have protocols in place to sustain caregiver well-being during these distressing experiences.

We report on a case of a 10-month-old infant with Wiskott Aldrich Syndrome who was hospitalized for bone marrow transplantation.

We describe the significant burden that fell upon caregivers during and after a bone marrow transplantation.

This case helped guide our suggestions to improve care for caregivers. Several logistical hurdles could be overcome to alleviate some of these burdens. We suggest that a child psychologist or psychiatrist should be on patient care teams and be attentive to parental stress, impairments, or impediments to self-care, and signs of emergency of mental illness in this setting of medical trauma. Additionally, promotion of sleep hygiene and linkage to support systems can maximize resiliency. Finally, we believe that hospital administrators should partner with clinicians to facilitate routine support during highly stressful transitions of care.

In 2014, over a million people were internally displaced after the launch of a military operation in North Waziristan, a tribal region on Pakistan's side of the Durand Line. Despite security concerns and restrictions, a collaborative mental health and psychosocial support initiative was undertaken in the district of Bannu. Monthly mental health camps were conducted for a period of 6 months by a multidisciplinary mental health team. The initiative also helped to assess mental health needs and plan training for primary care staff to strengthen existing resources.

As part of this initiative, Mental Health Gap Action Programme (mhGAP) training was conducted for physicians and psychosocial staff in the affected district. This marked the first instance of implementing these guidelines in Pakistan following a humanitarian crisis. This paper describes the training process including the adaptation of the mhGAP curriculum, training of trainers, training workshops for primary care staff and an analysis of results of pre- and post-testing of their knowledge about common mental disorders using a 25-item questionnaire.

The gaps in knowledge of primary care physicians in recognizing and managing common mental disorders were clearly identified. The mean pre- and post-test scores of the participants were 15.43, 62% (p value 0.000, s.d. 4.05) and 19.48, 78% (p value 0.000, s.d. 3.13) respectively, which showed significant improvement.

Despite the challenges of a humanitarian crisis, mhGAP guidelines can be successfully implemented to train primary care physicians in in low- and middle-income countries such as Pakistan. However, the dearth of primary care resources can hinder the complete integration of mental health services into primary healthcare.

The Great East Japan Earthquake, which occurred on March 11, 2011, caused unprecedented damage. To address evacuees’ psychosocial issues, our disaster mental health team provided psychosocial support in the form of careful listening and providing information for reconstruction.

To summarize evacuees’ psychosocial issues, we reviewed records of our daily activities and analyzed factors related to continuation or termination of support. Terminated support was defined as the resolution or improvement of psychological issues relative to the time of initial support.

Based on logistic regression analysis, living in prefabricated temporary housing (odds ratio [OR]: 0.37; 95% confidence interval [CI]: 0.19-0.72), a high number of improved stress symptoms (0.81; 95% CI: 0.67-0.99), and higher support frequency (0.84; 95% CI: 0.78-0.90) were significantly associated with a lower likelihood of continuing support. Conversely, economic and resettlement issues (2.75; 95% CI: 1.63-4.64) and high numbers of stress symptoms (1.24; 95% CI: 1.06-1.45) were strongly and significantly associated with continuing support, particularly in the mid- to long-term phase following the earthquake (ie, after August 1, 2011). No significant association was found between support status and alcohol problems or disaster-related experiences (eg, loss of family or housing).

Our findings highlight the need to be aware of evacuees’ social issues such as resettlement in the mid- to long-term post-disaster phase. (Disaster Med Public Health Preparedness. 2017;11:439–450)