Dataset Information

A qualitative analysis of psychosocial needs and support impacts in families affected by young sudden cardiac death: The role of community and peer support.

ABSTRACT:

Background

Young sudden cardiac death (YSCD), often occurring in previously healthy individuals, is a tragic event with devastating impact on affected families, who are at heightened risk of posttraumatic stress and prolonged grief and may themselves be at risk of YSCD. Previous research suggests that surviving family members' psychosocial support needs are often unmet.

Purpose

This study sought to identify how YSCD-affected families experience dedicated community and peer support in light of their psychosocial support needs.

Methods

The study used a qualitative design, employing a thematic analysis of focus group and interview data. Three focus groups and five individual interviews were conducted with affected family members (N?=?19). The sample was drawn from a UK-based charity, Cardiac Risk in the Young. Audio-recordings of the focus groups and interviews were transcribed and subjected to thematic analysis.

Results

Three super-ordinate themes were identified: 1. YSCD community support as offering a place of safety, 2. YSCD community support as fostering sense-making, 3. YSCD community support as facilitating finding new meaning.

Conclusions

YSCD-affected families can benefit from access to dedicated community and peer support that offers a safe environment, provides affiliation, understanding and normalisation and enables sense-making and the rebuilding of a sense of self. Dedicated community support can facilitate meaningful re-engagement with life through helping prevent YSCD and through memorialisation and legacy-building to maintain a continuing bond with the deceased. Clinicians need to be aware of the need to incorporate available community and peer support into patient pathways.

SUBMITTER: Steffen EM

PROVIDER: S-EPMC7817993 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

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Publications

A qualitative analysis of psychosocial needs and support impacts in families affected by young sudden cardiac death: The role of community and peer support.

Steffen Edith Maria EM Timotijevic Lada L Coyle Adrian A

European journal of cardiovascular nursing 20200505 8

<h4>Background</h4>Young sudden cardiac death (YSCD), often occurring in previously healthy individuals, is a tragic event with devastating impact on affected families, who are at heightened risk of posttraumatic stress and prolonged grief and may themselves be at risk of YSCD. Previous research suggests that surviving family members' psychosocial support needs are often unmet.<h4>Purpose</h4>This study sought to identify how YSCD-affected families experience dedicated community and peer support ...[more]

PMID: 32370539

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Project description:IntroductionApproximately 20% of people with a long-term condition (LTC) experience depressive symptoms (subthreshold depression [SUBD]). People with SUBD experience depressive symptoms that do not meet the diagnostic criteria for major depressive disorder. However, there is currently no targeted psychological support for people with LTCs also experiencing SUBD. Online peer support is accessible, inexpensive and scalable, and might offer a way of bridging the gap in psychosocial care for LTC patients. This article explores the psychosocial needs of people living with LTCs and investigates their perspectives on online peer support interventions to inform their future design.MethodsThrough a co-produced participatory approach, online focus groups were completed with people with lived experience of LTCs. Focus groups were audio recorded and transcribed verbatim. Reflexive thematic analysis (TA) was conducted adopting a critical-realist approach and an inductive analysis methodology that sought to follow participants' priorities and concerns.ResultsTen people with a range of LTCs participated across three online focus groups, lasting an average of 95 (±10.1) min. The mean age was 57 (±11.4) years and 60% of participants identified as female. The three key emerging themes were: (1) relationship between self and outside world; (2) past experiences of peer support; and (3) philosophy and vision of peer support. Adults living with LTCs shared their past experiences of peer support and explored their perspectives on how future online peer support platforms may support their psychosocial needs.ConclusionDespite the negative impact(s) of having a long-term physical health condition on mental health, physical and mental healthcare are often treated as separate entities. The need for an integrated approach for people with LTCs was clear. Implementation of online peer support to bridge this gap was supported, but there was a clear consensus that these interventions need to be co-produced and carefully designed to ensure they feel safe and not commercialised or prescriptive. Shared explorations of the potential benefits and concerns of these online spaces can shape the philosophy and vision of future platforms.Patient or public contributionThis work is set within a wider project which is developing an online peer support platform for those living with LTCs. A participatory, co-produced approach is integral to this work. The initial vision was steered by the experiences of our Patient and Public Involvement (PPI) groups, who emphasised the therapeutic value of peer-to-peer interaction. The focus groups confirmed the importance and potential benefit of this project. This paper represents the perspectives of PPI members who collaborate on research and public engagement at the mental-physical interface. A separate, independent Research Advisory Group (RAG), formed of members also living with LTCs, co-produced study documents, topic guides, and informed key decision-making processes. Finally, our co-investigator with lived experience (E. A.F.) undertook the analysis and write-up alongside colleagues, further strengthening the interpretation and resonance of our work. She shares first joint authorship, and as a core member of the research team, ensures that the conduct of the study is firmly grounded in the experience of people living with LTCs.

Project description:BackgroundFamilies with complex needs face significant challenges accessing and navigating health and social services. For veteran families, these challenges are exacerbated by interactions between military and civilian systems of care, and the density of the veterans' non-profit sector. This qualitative study was designed to gather rich, detailed information on complex needs in veteran families; and explore service providers' and families' experiences of accessing and navigating the veterans' support system.MethodsThe study comprised participant background questionnaires (n = 34), focus groups with frontline service providers (n = 18), and one-on-one interviews with veteran families (n = 16) in Australia. The semi-structured focus groups and interviews were designed to gather rich, detailed information on four study topics: (i) health and wellbeing needs in veteran families; (ii) service-access barriers and facilitators; (iii) unmet needs and gaps in service provision; and (iv) practical solutions for improving service delivery. The study recruited participants who could best address the focus on veteran families with complex needs. The questionnaire data was used to describe relevant characteristics of the participant sample. The focus groups and interviews were audio-recorded, transcribed, and a reflexive thematic analysis was conducted to identify patterns of shared meaning in the qualitative data.ResultsBoth service providers and families found the veterans' support system difficult to access and navigate. System fragmentation was perceived to impede care coordination, and delay access to holistic care for veteran families with complex needs. The medico-legal aspects of compensation and rehabilitation processes were perceived to harm veteran identity, and undermine health and wellbeing outcomes. Recovery-oriented practice was viewed as a way to promote veteran independence and self-management. Participants expressed a strong preference for family-centred care that was informed by an understanding of military lifestyle and culture.ConclusionThe health and wellbeing needs of veteran families intensify during the transition from full-time military service to civilian environments, and service- or reintegration-related difficulties may emerge (or persist) for a significant period of time thereafter. Veteran families with complex needs are unduly burdened by care coordination demands. There is a pressing need for high-quality implementation studies that evaluate initiatives for integrating fragmented systems of care.

Project description:BackgroundGrief following stillbirth and child death are one of the most traumatic experience for parents with psychosomatic, social and economic impacts. The grief profile, severity and its impacts in Indian context are not well documented. This study documented the grief and coping experiences of the Indian parents following stillbirth and child death.MethodsThis exploratory qualitative study in Delhi (India) included in-depth interviews with parents (50 mothers and 49 fathers), who had stillbirth or child death, their family members (n = 41) and community representatives (n = 12). Eight focus group discussions were done with community members (n = 72). Inductive data analysis included thematic content analysis. Perinatal Grief Scale was used to document the mother's grief severity after 6-9 months of loss.ResultsThe four themes emerged were grief anticipation and expression, impact of the bereavement, coping mechanism, and sociocultural norms and practices. The parents suffered from disbelief, severe pain and helplessness. Mothers expressed severe grief openly and some fainted. Fathers also had severe grief, but didn't express openly. Some parents shared self-guilt and blamed the hospital/healthcare providers, themselves or family. Majority had no/positive change in couple relationship, but few faced marital disharmony. Majority experienced sleep, eating and psychological disturbances for several weeks. Mothers coped through engaging in household work, caring other child(ren) and spiritual activities. Fathers coped through avoiding discussion and work and professional engagement. Fathers resumed work after 5-20 days and mothers took 2-6 weeks to resume household chores. Unanticipated loss, limited family support and financial strain affected the severity and duration of grief. 57.5% of all mothers and 80% mothers with stillbirth had severe grief after 6-9 months.ConclusionsStillbirth and child death have lasting psychosomatic, social and economic impacts on parents, which are usually ignored. Sociocultural and religion appropriate bereavement support for the parents are needed to reduce the impacts.

Project description:BACKGROUND: Patients with rare diseases such as congenital hypogonadotropic hypogonadism (CHH) are dispersed, often challenged to find specialized care and face other health disparities. The internet has the potential to reach a wide audience of rare disease patients and can help connect patients and specialists. Therefore, this study aimed to: (i) determine if web-based platforms could be effectively used to conduct an online needs assessment of dispersed CHH patients; (ii) identify the unmet health and informational needs of CHH patients and (iii) assess patient acceptability regarding patient-centered, web-based interventions to bridge shortfalls in care. METHODS: A sequential mixed-methods design was used: first, an online survey was conducted to evaluate health promoting behavior and identify unmet health and informational needs of CHH men. Subsequently, patient focus groups were held to explore specific patient-identified targets for care and to examine the acceptability of possible online interventions. Descriptive statistics and thematic qualitative analyses were used. RESULTS: 105 male participants completed the online survey (mean age 37?±?11, range 19-66 years) representing a spectrum of patients across a broad socioeconomic range and all but one subject had adequate healthcare literacy. The survey revealed periods of non-adherence to treatment (34/93, 37%) and gaps in healthcare (36/87, 41%) exceeding one year. Patient focus groups identified lasting psychological effects related to feelings of isolation, shame and body-image concerns. Survey respondents were active internet users, nearly all had sought CHH information online (101/105, 96%), and they rated the internet, healthcare providers, and online community as equally important CHH information sources. Focus group participants were overwhelmingly positive regarding online interventions/support with links to reach expert healthcare providers and for peer-to-peer support. CONCLUSION: The web-based needs assessment was an effective way to reach dispersed CHH patients. These individuals often have long gaps in care and struggle with the psychosocial sequelae of CHH. They are highly motivated internet users seeking information and tapping into online communities and are receptive to novel web-based interventions addressing their unmet needs.

Project description:PURPOSE:Previous studies suggest that within radiation oncology, medical physicists (MP) experience high workloads. Little is known about how MPs use social support (SS) in times of stress. METHODS:In collaboration with the Workgroup on Prevention of Medical Error, the American Association of Physicists in Medicine administered this Human Investigation Committee (HIC) approved email survey to 8566 members. Respondents were considered likely to seek SS if they answered (probably/definitely would) and unlikely to seek support if they answered (probably/definitely would not). Logistic regression was applied to determine associations between demographic factors and willingness to seek support as well as perception of barriers. RESULTS:One thousand two hundred and ninety-seven members (15.1%) accessed and gave consent for the survey. One thousand and one (11.7%) respondents answered all relevant questions. Respondents were predominantly male (69.1%), MP in radiation oncology (81.8%), private practice (51.6%), with practice duration> 10 yr (60.2%). MPs were likely to seek SS for personal physical illness (78.63%), involvement in a medical error (73.94%) or adverse patient outcome (75.17%). MPs sought SS in the setting of personal fatigue (33.2%) or burnout (44.3%). Barriers to seeking SS were lack of time (80.3%), and uncertainty about whom to access (70.7%). MPs responded that they would be most likely to seek support from an equally experienced medical physicist colleague (81.0%). Most MPs (67.0%) identified as having experienced stressors, with serious family illness (35.2%), or burnout (32.8%) being most common. Factors associated with MPs unwillingness to seek SS for medical error included> 20 yr in practice (vs still in training - OR 0.30, P = 0.015), and male gender (OR 0.60, P = 0.003). Male gender was associated with the lowest willingness to seek support (OR 2.10, P = 0.0001), but also with fewer perceived barriers (OR 1.60, P = 0.0075). CONCLUSION:Willingness to seek SS is demonstrated, and MPs want colleagues to provide support. Given these results, peer support could be considered among MPs.

Dataset Information

A qualitative analysis of psychosocial needs and support impacts in families affected by young sudden cardiac death: The role of community and peer support.

Background

Purpose

Methods

Results

Conclusions

Publications

A qualitative analysis of psychosocial needs and support impacts in families affected by young sudden cardiac death: The role of community and peer support.

Similar Datasets

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