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Pushing the boundaries: An evaluation of the Photographs of Meaning (POM) program for pediatric palliative caregivers (PPCGs)
Abstract
Translational research is seemingly ubiquitous, yet complex and difficult to concretely define. We contribute to this conversation by reflectively and critically evaluating a collaborative, multidisciplinary program called the Photographs of Meaning (POM) for pediatric palliative caregivers. The POM program brings together the public health issue of caregiving with community-based-art methodology and engagement. Following four stages for public health research; assessment, design, implementation, and evaluation, we focus on photovoice as a valuable methodological tool that can be integral to translational work in communication. The program evaluation illustrates the main points of translation from the first iteration of POM to the second, as we challenge the traditional ‘bench to bedside’ notion of translational research and offer a more relational approach where communication scholars can engage participants and community networks through photographs. We end with implications and recommendations for scholars working with pediatric palliative caregivers and public health research more generally.
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Background
Caregiving can affect people of all ages and can have significant negative health impacts on family caregivers themselves. Research has shown that social support acts as a buffer against many negative health impacts. A common source of social support is support groups. Although traditionally, these groups were conducted in a face-to-face setting, the advent of the internet, social media applications, and the smartphone have seen online support groups (OSGs) develop as a space where many caregivers seek support. The number of OSGs has increased exponentially, but there is no clear consensus on what factors or characteristics of OSGs contribute to social support development within them or what types of OSGs are available to family caregivers.
Objective
This study aimed to conduct a scoping review to contribute to the understanding of the types and characteristics of OSGs for family caregivers.
Methods
Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines, the CINAHL, PsychInfo, Psych Articles, Social Sciences, Communication Source, Medline, and Web of Science databases were searched for studies (caregiver focused, adults aged 18 years or older, online social support groups, caring for a living person, peer-reviewed journal publications on empirical research). In total, 19 studies were included in the review. The research questions were (1) what type of social support groups are online for adult family caregivers, (2) what the communication mediums and characteristics of these OSGs are, and (3) what psychosocial or other factors make OSGs successful or unsuccessful for participants.
Results
In response to the first research question, we found that the majority of OSGs took place on public text-based forums and were illness specific. Where demographics were reported, participants were predominately women, White, and working with university-level education. There were a variety of caregiving relationships. For the second research question, the most common communication medium found was text-based communication, with the use of emojis, photos, and GIF (Graphics Interchange Format) files as part of these exchanges. Most frequently, the OSGs were asynchronous with a degree of anonymity, not time-limited by the frequency of contact or duration, and moderated by peer or professional moderators or facilitators. Results for the third research question explored the overarching categories of safe communication and engagement and group management. These described successful OSGs as having a focus on similar others with shared lived experiences communicated in a nonjudgmental space overseen by trained peer or professional facilitators.
Conclusions
There are several key considerations for OSGs to be successful for family caregivers. A general recommendation for practitioners is to give importance to building active moderation and multifaceted structures of support to meet different levels of caregiver needs and the ability to engage.
Importance
Family caregivers provide the majority of health care to the 18 million patients with cancer in the US. Yet despite providing complex medical and nursing care, a large proportion of caregivers report no formal support or training. In recognition of this gap, many interventions to support cancer caregivers have been developed and tested over the past 2 decades. However, there are few system-level data on whether US cancer centers have adopted and implemented these interventions.
Objective
To describe and characterize the availability of family caregiver support programs in US cancer centers.
Design, Setting, and Participants
This cross-sectional national survey study was conducted between September 1, 2021, and April 30, 2023. Participants comprised clinical and administrative staff of Commission on Cancer–accredited US cancer centers. Data analysis was performed in May and June 2023.
Main Outcomes and Measures
Survey questions about the availability of 11 types of family caregiver programs (eg, peer mentoring, education classes, and psychosocial programs) were developed after literature review, assessment of similar program evaluation surveys, and discussions among a 13-member national expert advisory committee. Family caregiver programs were defined as structured, planned, and coordinated groups of activities and procedures aimed at specifically supporting family caregivers as part of usual care. Survey responses were tabulated using standard descriptive statistics, including means, proportions, and frequencies.
Results
Of the surveys sent to potential respondents at 971 adult cancer centers, 238 were completed (response rate, 24.5%). After nonresponse weight adjustment, most cancer centers (75.4%) had at least 1 family caregiver program; 24.6% had none. The most common program type was information and referral services (53.6%). Cancer centers with no programs were more likely to have smaller annual outpatient volumes (χ ² = 11.10; P = .011). Few centers had caregiver programs on training in medical and/or nursing tasks (21.7%), caregiver self-care (20.2%), caregiver-specific distress screening (19.3%), peer mentoring (18.9%), and children caregiving for parents (8.3%). Very few programs were developed from published evidence in a journal (8.1%). The top reason why cancer centers selected their programs was community members requesting the program (26.3%); only 12.3% of centers selected their programs based on scientific evidence. Most programs were funded by the cancer center or hospital (58.6%) or by philanthropy (42.4%).
Conclusions and Relevance
In this survey study, most cancer centers had family caregiver programs; however, a quarter had none. Furthermore, the scope of programming was limited and rarely evidence based, with few centers offering caregiving education and training. These findings suggest that implementation strategies are critically needed to foster uptake of evidence-based caregiver interventions.
Objective
Chronic diseases are the leading causes of death and disability in the U.S., and disease management largely falls onto patients’ family caregivers. The long-term burden and stress of caregiving negatively impact caregivers’ well-being and ability to provide care. Digital health interventions have the potential to support caregivers. This article aims to provide an updated review of interventions using digital health tools to support family caregivers and the scope of the Human-Centered Design (HCD) approaches.
Methods
We conducted a systematic search on July 2019 and January 2021 in PubMed, CINAHL, Embase, Cochrane Library, PsycINFO, ERIC, and ACM Digital Library, limiting to 2014–2021 to identify family caregiver interventions assisted by modern technologies. The Mixed Methods Appraisal Tool and the Grading of Recommendations Assessment, Development and Evaluation were used to evaluate the articles. Data were abstracted and evaluated using Rayyan and Research Electronic Data Capture.
Results
We identified and reviewed 40 studies from 34 journals, 10 fields, and 19 countries. Findings included patients’ conditions and relationships with family caregivers, how the technology is used to deliver the intervention, HCD methods, theoretical frameworks, components of the interventions, and family caregiver health outcomes.
Conclusion
This updated and expanded review revealed that digitally enhanced health interventions were robust at providing high-quality assistance and support to caregivers by improving caregiver psychological health, self-efficacy, caregiving skills, quality of life, social support, and problem-coping abilities. Health professionals need to include informal caregivers as an essential component when providing care to patients. Future research should include more marginalized caregivers from diverse backgrounds, improve the accessibility and usability of the technology tools, and tailor the intervention to be more culturally and linguistically sensitive.
Photovoice has gained acceptance as a viable visual method to engage community members as partners in research. However, as methods associated with photovoice have developed and evolved over time, concerns have also been raised with regard to how this impacts the methodological underpinnings on which photovoice rests. The aim of this article is to explore the meaning of dialogue and action as methodologically pivotal for the relevance of photovoice as community-based participatory research; further, using an empirical case and narrative theory, we attempt to contribute to an understanding of the processes that facilitate the viability and relevance of photovoice. By unpacking the contributions of dialogue and action towards a participatory methodology, in this case photovoice, the authors illustrate and argue for aspects critical in photovoice. Drawing on these aspects provides an arena for storytelling and story making, which have not previously had an explicit part in photovoice.
African Americans have a disproportionately high risk of premature death caused by cardiovascular diseases (CVDs) and related risk factors such as hypertension, high cholesterol, diabetes, and obesity. Heeding the culture-centered approach to communication’s (CCA) call for community-based health solutions for marginalized populations, in this study African Americans living with CVDs and associated risk factors describe their experiences with the disease using a photovoice approach. Participants demonstrate tremendous agency in their efforts to adopt a healthy lifestyle and manage their heart diseases. Structural factors such as socioeconomic status, insurance, discrimination, and knowledge enable and constrain their agency. Several cultural factors, such as food culture, reluctance to see doctors, consumerism, and religiosity, mediate the relationship between structure and agency. Public health professionals and researchers can capitalize on our findings in promoting cardiovascular health among the African American communities.
Background: Caring for a child or adolescent with palliative care needs can significantly influence the physical, mental, financial, and social well-being of caregivers. Due to this multifaceted impact, there is a demand for evidence-based support that meets the distinct needs of this population.
Objective: This study aims to evaluate the effect the Photographs of Meaning Program (POM) has on meaning and purpose, well-being, and perceived social support of pediatric palliative caregivers (PPCGs).
Design: Over an eight-week period, participants followed a meaning-making curriculum via social media. Following the social media portion of the intervention, a reflection and closure event and a community photograph exhibit were held. Participants completed pre- and post-test measures.
Setting/Subjects: Eighteen PPCGs participated in POM. Settings included participant homes, the medical campus of the palliative care program, and a community art gallery.
Measurements: Participant meaning and purpose were assessed through the Meaning in Life Questionnaire. The Flourishing Scale measured PPCG well-being, while the Social Provisions Scale assessed perceived social support. Participants were also given a satisfaction survey at study closure.
Results: Presence (p = 0.003) and search (p = 0.023) for meaning were both positively impacted at post-test. Participants' ratings of well-being (p = 0.037), overall social support (p = 0.004), areas of attachment (p = 0.003), social integration (p = 0.026), reassurance of worth (p = 0.002), and guidance (p = 0.014) significantly increased from pre- to post-test.
Conclusions: POM is an effective social media-based intervention for PPCGs. Future research should assess the effectiveness of this intervention in populations with differing demographics and its effect on other psychosocial indicators.
Guided by the hypothesis that the arts can play a role in changing attitudes, beliefs, and health behaviors, the objectives of the study were to (1) overview artistic practices, interventions, and research being conducted at the intersection of the arts and health communication and (2) identify desired and observed outcomes and variables measured in these studies.
In all, 78 articles met inclusion criteria. Number of participants ranged from 4 to 2140 (mean = 179); 61 (78.2%) outcome studies, including 8 experimental studies; 17 (21.79%) formative research or reports. Many different health topics were addressed and different art forms used.
The authors highlight the need to build an evidence base for arts and public health.
This article provides an overview of the development and growth of the exciting and relevant academic field of health communication scholarship. The key areas of health communication study are described, as are the important applications of this work for promoting health. Key areas for health communication scholarship are examined, such as the promotion of health equity for vulnerable and at-risk populations who often experience serious disparities in health outcomes. The importance of studying the effective dissemination of relevant health information across diverse communication channels and media is also examined. The value of multi-methodological and translational health communication research is explored as an important scholarly process for generating relevant health communication data for guiding evidence-based health communication policies and practices. The need to conduct rigorous health communication research across the continuum of care (prevention, detection, diagnosis, treatment, survivorship, and end-of-life) is explained. The paper concludes with a description of the value of health communication inquiry for addressing important health issues locally, regionally, nationally, and globally.
Stakeholder engagement is acknowledged as central to dissemination and implementation (D&I) of research that generates and answers new clinical and health service research questions. There is both benefit and risk in conducting stakeholder engagement. Done wrong, it can damage trust and adversely impact study results, outcomes, and reputations. Done correctly with sensitivity, inclusion, and respect, it can significantly facilitate improvements in research prioritization, communication, design, recruitment strategies, and ultimately provide results useful to improve population and individual health. There is a recognized science of stakeholder engagement, but a general lack of knowledge that matches its strategies and approaches to particular populations of interest based on history and characteristics. This article reviews stakeholder engagement, provides several examples of its application across the range of translational research, and recommends that Clinical Translational Science Awards, with their unique geographical, systems, and historical characteristics, actively participate in deepening our understanding of stakeholder engagement science and methods within implementation and dissemination research. These recommendations include (a) development of an inventory of successful stakeholder engagement strategies; (b) coordination and intentionally testing a variety of stakeholder engagement strategies; (c) tool kit development; and (d) identification of fundamental motivators and logic models for stakeholder engagement to help align stakeholders and researchers.
The efficient and effective movement of research into practice is acknowledged as crucial to improving population health and assuring return on investment in healthcare research. The National Center for Advancing Translational Science which sponsors Clinical and Translational Science Awards (CTSA) recognizes that dissemination and implementation (D&I) sciences have matured over the last 15 years and are central to its goals to shift academic health institutions to better align with this reality. In 2016, the CTSA Collaboration and Engagement Domain Task Force chartered a D&I Science Workgroup to explore the role of D&I sciences across the translational research spectrum. This special communication discusses the conceptual distinctions and purposes of dissemination, implementation, and translational sciences. We propose an integrated framework and provide real-world examples for articulating the role of D&I sciences within and across all of the translational research spectrum. The framework’s major proposition is that it situates D&I sciences as targeted “sub-sciences” of translational science to be used by CTSAs, and others, to identify and investigate coherent strategies for more routinely and proactively accelerating research translation. The framework highlights the importance of D&I thought leaders in extending D&I principles to all research stages.
Objective
Systematic review and analysis of definitions of translational research.
Materials and methods
The final corpus was comprised of 33 papers, each read by at least 2 reviewers. Definitions were mapped to a common set of research processes for presentation and analysis. Influence of papers and definitions was further evaluated using citation analysis and agglomerative clustering.
Results
All definitions were mapped to common research processes, revealing most common labels for each process. Agglomerative clustering revealed 3 broad families of definitions. Citation analysis showed that the originating paper of each family has been cited ~10 times more than any other member.
Discussion
Although there is little agreement between definitions, we were able to identify an emerging consensus 5-phase (T0–T4) definition for translational research. T1 involves processes that bring ideas from basic research through early testing in humans. T2 involves the establishment of effectiveness in humans and clinical guidelines. T3 primarily focuses on implementation and dissemination research while T4 focuses on outcomes and effectiveness in populations. T0 involves research such as genome-wide association studies which wrap back around to basic research.
Conclusion
We used systematic review and analysis to identify emerging consensus between definitions of translational research phases.
Background
When parents of young children with special health care needs (CSHCN) receive their child’s diagnosis, they encounter information they may not understand, emotions they may not know how to cope with, and questions about their child’s immediate and long-term future that frequently lack answers. The challenge of health care providers is how to prepare parents for caring for their CSHCN, for coping with any resulting challenges, and for accessing the systems and services that can assist them.
Objective
The purpose of this work was to review evidence of the information and support needs of parents of young CSHCN and to determine whether online social support can serve as an avenue for learning and empowerment for these parents.
Methods
A scoping review identified the challenges, coping mechanisms, and support needs among parents of CSHCN, and the reach and effectiveness of digital technologies with these families and health care providers. We also conducted interviews with professionals serving parents of CSHCN.
Results
The literature review and interviews suggested that parents best learn the information they need, and cope with the emotional challenges of raising a CSHCN, with support from other parents of CSHCN, and that young parents in recent years have most often been finding this parent-to-parent support through digital media, particularly social media, consistent with the theory of online social support. Evidence also shows that social media, particularly Facebook, is used by nearly all women aged 18-29 years across racial and socioeconomic lines in the United States.
Conclusions
Parents of young CSHCN experience significant stress but gain understanding, receive support, and develop the ability to care for and be advocates for their child through parent-to-parent emotional and informational social support. Online social support is most effective with young adults of childbearing age, with social media and apps being the most useful within the theoretical framework of social support. This opens new opportunities to effectively educate and support parents of young CSHCN. Providers seeking to inform, educate, and support families of CSHCN should develop strategies to help parents find and use social support through digital resources to facilitate their emotional adjustment and practical abilities to care for and access services for their child.
Introduction
Translational research is central to international health policy, research and funding initiatives. Despite increasing use of the term, the translation of basic science discoveries into clinical practice is not straightforward. This systematic search and narrative synthesis aimed to examine factors enabling or hindering translational research from the perspective of basic and clinician scientists, a key stakeholder group in translational research, and to draw policy-relevant implications for organisations seeking to optimise translational research opportunities.
Methods and Results
We searched SCOPUS and Web of Science from inception until April 2015 for papers reporting scientists’ views of the factors they perceive as enabling or hindering the conduct of translational research. We screened 8,295 papers from electronic database searches and 20 papers from hand searches and citation tracking, identifying 26 studies of qualitative, quantitative or mixed method designs. We used a narrative synthesis approach and identified the following themes: 1) differing concepts of translational research 2) research processes as a barrier to translational research; 3) perceived cultural divide between research and clinical care; 4) interdisciplinary collaboration as enabling translation research, but dependent on the quality of prior and current social relationships; 5) translational research as entrepreneurial science. Across all five themes, factors enabling or hindering translational research were largely shaped by wider social, organisational, and structural factors.
Conclusion
To optimise translational research, policy could consider refining translational research models to better reflect scientists’ experiences, fostering greater collaboration and buy in from all types of scientists. Organisations could foster cultural change, ensuring that organisational practices and systems keep pace with the change in knowledge production brought about by the translational research agenda.
The unforeseen trials of arts-based research may suppress creative and innovative explorations. Photovoice, a visual method of investigation employing participatory photography, presents a host of apprehensions. Yet, photovoice is both a valid and rich methodology that can greatly expand the reach and scope of applied communication research. In this essay, we – three applied communication researchers – discuss the complexities of photovoice, highlighting areas of consideration that interested researchers should contemplate before utilizing this methodology. Briefly exploring three of our research studies and their varying topics (i.e. long-term cancer survivors, domestic violence organizational advocacy, male body culture), we discuss three broad areas of difficulty in photovoice research: analysis, control, and exposure. Despite the unique obstacles that photovoice presents, we argue that it, along with other forms of arts-based research, are profitable and definitely worth the challenge.
Objective:
To pilot public health interventions at women potentially interested in maternity care via campaigns on social media (Twitter), social networks (Facebook), and online search engines (Google Search).
Data sources/study setting:
Primary data from Twitter, Facebook, and Google Search on users of these platforms in Los Angeles between March and July 2014.
Study design:
Observational study measuring the responses of targeted users of Twitter, Facebook, and Google Search exposed to our sponsored messages soliciting them to start an engagement process by clicking through to a study website containing information on maternity care quality information for the Los Angeles market.
Principal findings:
Campaigns reached a little more than 140,000 consumers each day across the three platforms, with a little more than 400 engagements each day. Facebook and Google search had broader reach, better engagement rates, and lower costs than Twitter. Costs to reach 1,000 targeted users were approximately in the same range as less well-targeted radio and TV advertisements, while initial engagements-a user clicking through an advertisement-cost less than $1 each.
Conclusions:
Our results suggest that commercially available online advertising platforms in wide use by other industries could play a role in targeted public health interventions.
Background
The leading cause of death among young children in southern Africa is complications due to HIV infection and, in South Africa, over a third of all deaths of children younger than five are associated with HIV infection. There is a great and urgent need for children’s palliative care in Africa, whether HIV-related or not. It is often not possible for sick children and their carers to attend clinics and hospitals cannot accommodate children for long periods of time. As a result children are often cared for in their own homes where caregivers require support to provide informed and sensitive care to reduce children’s suffering. Home-care places a heavy burden on families, communities and home- and community-based care workers. Methods
This project involved the development and pilot evaluation of a training and support package to guide home and community-based care workers to help caregivers of seriously ill young children at home in southern Africa. A number of research methods were used, including a cross-sectional survey of content experts using the Delphi technique, participatory action research with photo elicitation and qualitative thematic analysis. ResultsBecause the palliative care needs of these children are complex, the package focuses on delivering 9 key messages essential to improving the quality of care provided for young children. Once the key messages were developed, culturally relevant stories were constructed to enhance the understanding, retention and enactment of the messages. The various research methods used, including literature reviews, the Delphi technique and photo-elicitation ensured that the content included in the package was medically sound and culturally relevant, acceptable, feasible, and comprehensive. The end product is a home-based paediatric palliative care training and support package in English designed to help train community workers who are in a position to support families to care for very sick young children at home as well as to support families in looking after a very sick child. ConclusionA pilot study to assess the training and support package found it to be useful in delivering the key messages to caregivers. The training component was found to be feasible. It is concluded that the package offers a practical means of integrating palliative care with home-based care. Further implementation and evaluation is needed to establish its utility and impact.
Homelessness remains a major problem in the United States as a result of urban deprivation, economic decline, a rise in housing costs, and a decline in blue-collar wages. Meanwhile, the dominant discourses around homelessness tend to frame the matter in terms of individual deviance rather than structural impediments. This study utilizes Community-Based Participatory Research and the photovoice method to articulate what a small number of “successfully home stable individuals” attribute to helping them to remain home stable as well as those factors that challenge this situation. The study analyzes how these attributions challenge the “common sense” about homelessness by refiguring the concept as a reintegration process with manifold causes and paths into and out of episodic home instability and giving voice to formerly homeless individuals who are successfully navigating reintegration into housed society.
Photovoice is an increasingly popular research method across disciplines due to its flexibility and capacity for generating rich data. This article argues that while its practical virtues are abundant, the theoretical contributions of photovoice to qualitative research are just as important. We argue that photographs can act as boundary objects that enable collective sensemaking at multiple stages of a research study. This is fulfilled through a case study of gas extraction and distribution networks and their social consequences in West Virginia, a state in the United States deeply entrenched geographically and culturally in natural resource extraction. Ultimately, this case study demonstrates that photovoice as a process and photographs as artifacts are sites for rich collaborative interpretation and provides a model of how to operationalize photos in multiple stages of research so that study designs are centered around participant experiences.
Narrative tellability is a guiding principle that enables scholars to understand how, when, and to whom a story is (not) told. The current study was done while considering ideas of the theory of communication privacy management to further understand narrative tellability within the context of unpaid, informal care. Unpaid, informal caregivers are at a challenging intersection of privacy management, as they navigate their own, as well as their loved one’s, private information. From the qualitative, inductive analysis of 20 narratives, characteristics of tellability emerged as: Story would do Undesirable Identity Work, Story would Produce Negative Sanctions, and Story would Negatively Impact Relationship(s). I conclude with a discussion of conceptual and practical implications of viewing narrative tellability through the lens of privacy management.
As the use of the photovoice method has proliferated over the past three decades, several literature reviews have been conducted about implementing the method in the context of health promotion research and practice. Challenges emerged from the literature frequently enough to be reported in several reviews. As such, the purpose of this “review of reviews” was to identify and describe the various challenges to implementing photovoice as reported in published literature reviews. Taken together, the sum of the reviews’ critiques about photovoice may be of particular use for developing solutions regarding challenges that limit the utility and outcomes of the method. The literature reviews included in this study were identified using PubMed, CINAHL, Google Scholar, and backward/forward chaining. The final 15 review articles included in the study were analyzed for the challenges of implementing photovoice described in each review. Four major themes emerged from the reviews: (1) inconsistent adherence to the photovoice method, (2) inconsistent evaluation of photovoice outcomes and impacts, (3) implementation challenges with specific populations, and (4) inconsistent reporting and adherence to ethical procedures. For those conducting photovoice projects in the future, the implications of the findings include maximizing participant engagement in the project from start to finish, evaluating photovoice projects for effectiveness in producing community change, and reporting ethical procedures.
Objective:
Pediatric health systems are increasingly screening caregivers for unmet social needs. However, it remains unclear how best to connect families with unmet needs to available and appropriate community resources. We aimed to explore caregivers' perceived barriers to and facilitators of community resource connection.
Methods:
We conducted semi-structured interviews with caregivers of pediatric patients admitted to one inpatient unit of an academic quaternary care children's hospital. All caregivers who screened positive for one or more unmet social needs on a tablet-based screener were invited to participate in an interview. Interviews were recorded, transcribed, and coded by two independent coders using content analysis, resolving discrepancies by consensus. Interviews continued until thematic saturation was achieved.
Results:
We interviewed 28 of 31 eligible caregivers. Four primary themes emerged. First, caregivers of children with complex chronic conditions felt that competing priorities related to their children's medical care often made it more challenging to establish connection with resources. Second, caregivers cited burdensome application and enrollment processes as a barrier to resource connection. Third, caregivers expressed a preference for geographically tailored, web-based resources, rather than paper resources. Lastly, caregivers expressed a desire for ongoing longitudinal support in establishing and maintaining connections with community resources after their child's hospital discharge.
Conclusion:
Pediatric caregivers with unmet social needs reported competing priorities and burdensome application processes as barriers to resource connection. Electronic resources can help caregivers identify locally available services, but longitudinal supports may also be needed to ensure caregivers can establish and maintain linkages with these services.
The purpose of this scoping review was to examine the use of Photovoice in caring research. The review assessed the existing literature using the Arksey and O’Malley scoping review methodology. Database searches of relevant literature published worldwide between 1997–2019 yielded 25 articles in the English language that were included in this review. The authors summarized thematic findings. Three themes emerged from data analysis: 1) strengths of using Photovoice; 2) challenges of using Photovoice, and; 3) methodological complexities in Photovoice studies. The small number of studies included in the review (n=25) indicate the limited use of Photovoice in caring research, reflecting missed opportunities for action-oriented research. The scoping review recommends ways that researchers can better address the needs of carers using Photovoice, particularly as a tool for knowledge translation, advocacy, and empowerment.
Background
When family caregivers are involved in patient care, both patients and caregivers experience better clinical outcomes. However, caregivers experience communication difficulties as they navigate a complex health care system and interact with health care providers. Research indicates that caregivers experience a communication burden that can result in topic avoidance and distress; however, little is known about how burden stemming from communication difficulties with health care providers relates to caregiving outcomes.
Objectives
To investigate how family caregiver communication difficulties with health care providers influence caregiver quality of life and anxiety.
Methods
Data were collected in a cross-sectional online survey of 220 caregivers with communication difficulties resulting from caregiver avoidance of caregiving-related topics, inadequate reading and question-asking health literacy, and low communication self-efficacy.
Results
Caregiver outcomes were not affected by reading health literacy level but did differ based on question-asking health literacy level. Adequate question-asking health literacy was associated with lower anxiety and a higher quality of life. Caregivers who avoided discussing caregiving topics reported higher anxiety and lower quality of life and caregivers with increased communication self-efficacy reported a higher quality of life.
Conclusion
Involvement of family caregivers in care is likely to require tailored approaches that address caregiver communication and health literacy skills. Findings from this study suggest that hospice and palliative care providers should identify and provide support for caregiver communication difficulties in order to positively influence caregiver quality of life and anxiety.
Purpose:
This study assessed the feasibility and preliminary efficacy of the Photographs of Meaning Program for Adolescent and Young Adult cancer patients and survivors (POM-AYA).
Methods:
POM-AYA is a structured 10-week meaning-based intervention in which participants post photographs and accompanying narratives through a social media platform. Measures of depression, overall quality of life (QoL), and spiritual well-being were assessed on consent (T1), after completing the 10-week intervention (T2) and 2 months' postintervention (T3). Participants also completed a satisfaction questionnaire and follow-up semi-structured interviews.
Results:
Thirty AYA cancer patients and survivors (ages 17-36) were enrolled in the study. At T2, depressive symptoms were significantly lower and QoL was significantly higher compared with T1. These gains were maintained at T3. There were no significant differences in reported spiritual well-being across the study period. Overall, participants reported high rates of study satisfaction in both the survey and qualitative feedback.
Conclusion:
POM-AYA appears to be a potentially beneficial, widely accessible intervention in reducing depressive symptoms and increasing QoL in AYA cancer patients and survivors.
Objective
To examine the characteristics of interventions to support family caregivers of patients with advanced cancer.
Methods
Five databases (CINAHL, Medline, PsycINFO, Web of Science, and the Cochrane Library) were searched for English language articles of intervention studies utilizing randomized controlled trials or quasi-experimental designs, reporting caregiver-related outcomes of interventions for family caregivers caring for patients with advanced cancer at home.
Results
A total of 11 studies met the inclusion criteria. Based on these studies, the types of interventions were categorized into psychosocial, educational, or both. The characteristics of interventions varied. Most interventions demonstrated statistically significant results of reducing psychological distress and caregiving burden and improving quality of life, self-efficacy, and competence for caregiving. However, there was inconsistency in the use of measures.
Conclusions
Most studies showed positive effects of the interventions on caregiver-specific outcomes, yet direct comparisons of the effectiveness were limited. There is a lack of research aimed to support family caregivers’ physical health.
Practice implications
Given caregivers’ needs to maintain their wellbeing and given the positive effects of support for them, research examining long-term efficacy of interventions and measuring objective health outcomes with rigorous quality of studies is still needed for better outcomes for family caregivers of patients with advanced cancer.
Health care in aging societies increasingly demands that relatives, partners, or friends provide informal care for loved ones at their end of life. Yet, being an informal caregiver involves significant health threats caused by so-called caregiver burden. To cope with the broad spectrum of challenges, informal caregivers seek social support in the care relationship network emerging around a (future) patient. However, obtaining social support is not limited to offline contexts. Members of online communities also provide experiential knowledge and social support. To explore how informal caregivers seek and provide social support online and how this is interrelated with their care relationship networks, we conducted a qualitative content analysis of 75 threads about advance care planning from German online forums (2003-2017). Our findings show that informal caregivers rely on what we conclusively coined communicative care (i.e., informational and emotional support in burdensome care situations), often in response to impaired offline relationships within care relationship networks.
An increasing focus on health equity across a number of health disciplines is generating more consistent prioritizations of trauma-informed approaches, cultural responsiveness, and community engagement. These foci have heightened interest in photovoice as a participatory research method—particularly in research among vulnerable populations or related to sensitive topics. Photovoice’s ballooning popularity can be traced in part to the alignment of its aims and practices with broad health equity goals; at the same time, its singular status reveals a lack of similarly creative, adaptive methods for use in vulnerable or sensitive contexts. In addition, photovoice is not without its concerning limitations, and its increasing usage warrants not only caution, but responsive innovation. To that end, this article draws on the extensive photovoice literature, as well as on the author’s own work at the intersections of public health and the arts, to offer an overview of four photovoice limitations and related concerns. It then highlights the method’s untapped potential by identifying under-researched qualities in need of development—noting these as opportunities to learn from (and further adapt) the photovoice method. Finally, the article pulls limitations and benefits together to frame photovoice as a basis for the continued innovation, study, and development of more equitable approaches to health research and practice.
Cancer impacts spouse caregivers, especially when couples engage in dyadic coping around the cancer. Communication is a key factor in this process. Our goals were to describe cancer-related communication between advanced cancer patients and their spouse caregivers, and to describe how dyadic communication patterns are related to caregivers’ reported burden and preparedness for caregiving. Caregivers completed measures of caregiver burden and preparedness for caregiving. Then, the patient and caregiver were asked to interact with each other in two structured discussions: a neutral discussion and a problem discussion focused on cancer. Discussions were coded using the Rapid Marital Interaction Coding System (RMICS2). Caregivers reported moderate levels of preparation and burden. Greater caregiver hostility communication predicted higher levels of caregiver burden, whereas greater caregiver dysphoric affect communication predicted lower levels of caregiver burden. Whereas positivity was more common than hostility in couples’ communication, patient hostility was a significant predictor of caregiver preparedness. Patient neutral constructive problem discussion was also associated with increased caregiver preparedness. Caregiver outcomes are an understudied component to dyadic cancer research. Our paper describes observational data on cancer-related communication between caregivers and advanced cancer patients and communication’s influence on caregiver outcomes. This work provides the foundation for future evidence-based communication interventions that may influence both patient and caregiver outcomes.
Family caregivers need greater support to provide optimal assistance to their care recipients. Using family communication patterns theory (FCPT), this study examined conversation and conformity orientation, received social support by caregivers from family members, and perceived quality of care (i.e., caregiving mastery). An online survey of 191 adults caring for or who had previously cared for family members with a variety of health conditions revealed that conversation orientation is positively related to received social support, which is positively associated with quality of care. Received social support mediated the relationship between family conversation orientation and quality of care, though indirect effects for conformity orientation were not observed.
The Photographs of Meaning Program for pediatric palliative caregivers (POM-PPCG) is an innovative, meaning-based intervention utilizing photovoice and social media components. In 2017, 9 pediatric palliative caregivers participated in this intervention. During the social media portion of the POM-PPCG, participants were presented with weekly themes based on a meaning-making curriculum. In response, they took photographs, applied either audio or typed narratives, and shared them via social media. Ninety-five photographs with narratives were produced during the intervention. Through thematic qualitative analysis with consensual qualitative research components, 5 themes were identified: Love, Challenges, Loss, Coping, and The New Normal. This study adds to existing literature by shedding light on the experiences of caregivers of children with palliative care needs. Findings from this research contribute not only to the innovative use of qualitative methods but also to the clinical knowledge and practice regarding the pediatric palliative caregiver experience.
Background:
Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental, physical, financial, and social strain. There is limited research on the creation and evaluation of interventions specifically for this population despite clear need.
Objective:
This study aims to evaluate the feasibility and engagement of the Photographs of Meaning Program, a modified meaning-making intervention for pediatric palliative caregivers.
Design:
Participants completed a pre-post intervention meaning-in-life measure. Over a 9-week period, participants followed a meaning-making curriculum whereby they created and shared photo narratives via social media. As part of the intervention, a community photo exhibition was held featuring these photo narratives. Exit interviews were also conducted at study close.
Setting/participants:
Nine individuals providing informal care to children in a pediatric palliative care program participated in the intervention. All participants were female and are older than 18 years. Settings for research include participant homes and at The Center for Hospice and Palliative Care in Cheektowaga, New York.
Results:
Participants posted 95 photographs and 96 narratives during the intervention, posting on average once each week. Statistical analysis within the small sample indicated an increased presence of meaning in the lives of participants ( P = .022). Exit interviews conveyed satisfaction with the intervention.
Conclusions:
Findings suggest that the Photographs of Meaning Program is a practical intervention with life-enhancing potential for pediatric palliative. Future research should aim to collect additional evidence of the intervention's effectiveness.
Objective
The aim of this study is to illustrate an evidence‐based and theoretically informed mhealth resource (smartphone app) designed to provide communication support for informal cancer caregivers (friends or family members).
Methods
An eight‐step process was conducted: (a) review of existing print resources; (b) selection of theoretical framework for content development; (c) integration of stakeholder feedback and literacy assessment into an alpha print model; (d) review of existing mhealth resources; (e) development of prototype; (f) assessment of caregiver acceptability (n=5); (g) assessment of quality and perceived impact by cancer providers (n=26); and (h) acceptability testing with caregivers (n=6).
Results
Key stakeholders were integrated throughout development and user testing of this iOS smartphone app. The smartphone app consists of talking tips and resources for caregiver communication with the patient, family, far away family, and healthcare providers, as well as general information sharing features.
Conclusions
This study demonstrates feasibility and development of an evidence‐based and theory‐driven mhealth resource to support caregiver communication about cancer. This is the first theory‐driven mhealth application created to support the communication burden experienced by cancer caregivers. A larger study is needed to establish the efficacy of the app as an intervention for caregivers.
This chapter introduces photovoice methods as a dynamic approach to qualitative research in the Digital Humanities. With this method, photographs taken by participants to document their experiences are used both as data and as memory aids to prompt recollections during later interviews and focus groups, providing rich, narrative data. This chapter outlines how the photovoice method operates, offering practical advice for implementing this technique in research projects. We discuss both the strengths and weaknesses of this method, and explain our own research study on community engagement and service-learning to give readers a step-by-step guide to using photovoice in an informed and innovative way.
Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients’ and family caregivers’ experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety‐five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregivers experienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.
Using a discursive-material framework, this study explored the complex ways in which food security and food insecurity are expressed and experienced by people who are unemployed. A Photovoice study of 21 individuals from across the social class spectrum revealed the way jobless individuals navigate the discursive-material dialectic regarding their food (in)security. In the first theme, food insecurity as figure, resource-deprived participants had a tendency to focus on the materiality of food with regard to survival. In the second theme, the blurring of figure/ground in the midst of food (in)security, participants with tenuous resources blurred the materiality of food through discourse that obscured their needs. In the third theme, food security as ground, resource secure participants discursively relegated the materiality of food to the background. Implications are discussed.
Children experiencing the death of baby brother or sister have reported individual, familial, and communicative challenges. Siblings also have indicated that the loss of a baby in their family enriched their lives despite their pain. The present study extends this work by focusing not only on siblings but also other children enmeshed in the family system. Additionally, we heed the call for the use of arts-based methods in family communication by performing a visual narrative analysis of children’s baby loss remembrance drawings. This analysis of 131 drawings completed by children ages zero to 18 yielded three main themes, including narration of identity, narration of life and death, and narration of growing sense-making. Two continua capture these themes, including the subject of narrativization and the mode of narrativization. In presenting these findings, we provide a unique (means of) understanding children’s experience of baby loss in the family.
As a concept and as a form of practice in the biomedical sciences, “translational research” is both everywhere and yet nowhere, and the challenges to translational success are significant. This essay introduces the notion of translational research in its contemporary sociopolitical context and proceeds to identify problems of communication at the core of translational research. Widely discussed and yet poorly understood, even by those who conduct it, translational research would benefit from the sustained attention of scholars working at the intersection of medical/health humanities and health communication studies.
Guided by communicated narrative sense-making, the present study explored the themes that characterize adult siblings’ stories about their experiences with sharing care of aging parents. Interviews with 20 adult siblings revealed the varied and emotional nature of their shared parental caregiving stories. Adult siblings primarily constructed meaning of their caregiving experiences by drawing upon three overarching narratives: (1) the narrative of (in)equity, (2) the narrative of ideal versus real, and (3) the narrative of interconnectedness. These findings highlight the need for adult siblings providing care for their parents to work together as a team, exercise empathy in their interactions, and express gratitude for one another’s contributions. Several practical applications are discussed that can help siblings manage and overcome the relational challenges associated with caring for a parent.
This article contains a review of literature published from 2010 to 2016 on family caregiving in oncology. An analysis of 810 citations resulted in 50 randomized trials. These trials describe the need to prepare family caregivers for the complex role they play in cancer care. Several studies have demonstrated improved quality of life for family caregivers and improved emotional support from interventions. Several studies addressed communication and relational intimacy, which are key concerns. An additional focus of these trials was in the area of caregiving tasks and ways to diminish the burden of caregiving and preparedness for this role. Further research is needed in this area given the shift to outpatient care and as family caregivers become the primary providers of care. Future research should include expanding tested models of family caregiver support in clinical practice and in diverse populations. CA Cancer J Clin 2017.
Family caregivers are a quickly growing population in American society and are potentially vulnerable to a number of risks to well-being. High stress and little support can combine to cause difficulties in health and personal relationships. Siblings are, however, a possible source of protection for the at-risk caregiver. This study examines the relationships between caregiver burden, relational conflict, individual contribution, and gratitude exchange between caregivers and their siblings as they attend to the issue of caring for aging parents. Dyadic data were collected through an online survey and were analyzed using a series of actor–partner interdependence models. Dimensions of gratitude related to reduced caregiver burden, improved care-related conflict, and promotion of greater contribution to caregiving.
Online support groups are attractive to individuals suffering from various types of mental and physical illness due to their accessibility, convenience, and comfort level. Individuals coping with depression, in particular, may seek social support online to avoid the stigma that accompanies face-to-face support groups. We explored how task and relational messages created social support in online depression support groups using Cutrona and Suhr’s social support coding scheme and Bales’s Interaction Process Analysis coding scheme. A content analysis revealed emotional support as the most common type of social support within the group, although the majority of messages were task rather than relational. Informational support consisted primarily of task messages, whereas network and esteem support were primarily relational messages. Specific types of task and relational messages were associated with different support types. Results indicate task messages dominated online depression support groups, suggesting the individuals who participate in these groups are interested in solving problems but may also experience emotional support when their uncertainty is reduced via task messages.
The benefits of transdisciplinary collaboration for addressing complex health problems are widely accepted; however, acknowledging the bumps and twists along the road that are inherent in those collaborations is often considered taboo. Academic norms that prevent open discussion of these challenges can have counter-productive results. This essay describes the major education efforts, milestones, and footfalls in the development of an effective partnership between communication-trained researchers in a College of Journalism and Communications and medical researchers in a College of Medicine. We hope it can serve as “best practice” for understanding the value of team science and interdisciplinary research collaborations.
This distinctive collection explores the use of narratives in the social construction of wellness and illness. Narratives, Health, and Healing emphasizes what the process of narrating accomplishes--how it serves in the health communication process where people define themselves and present their social and relational identities. Organized into four parts, the chapters included here examine health narratives in interpersonal relationships, organizations, and public fora. The editors provide an extensive introduction to weave together the various threads in the volume, highlight the approach and contribution of each chapter, and bring to the forefront the increasingly important role of narrative in health communication. This volume offers important insights on the role of narrative in communicating about health, and it will be of great interest to scholars and graduate students in health communication, health psychology, and public health. It is also relevant to medical, nursing, and allied health readers. © 2005 by Lawrence Erlbaum Associates, Inc. All rights reserved.
Members of vulnerable populations-including people who are poor, elderly, immigrants, members of minority groups, have disabilities, and/or those with low levels of education-are at great risk for negative health outcomes. They need relevant, accurate, timely, up-to-date, understandable, culturally sensitive, and easy-to-use health information to make good health decisions about avoiding health risks, responding to health problems, and promoting health. Health information specialists, such as health educators, health promotion experts, campaign designers, health librarians, journalists, science writers, and others face tremendous challenges in designing health communication programs that effectively reach and influence vulnerable populations. Complex societal, cultural, educational, and literacy-related factors often compromise the success of health communication efforts. This chapter will examine the use of community-based research strategies for addressing these challenges and guide the development of evidence-based health communication programs that meet the unique information needs of at-risk populations. © C. Arnott Smith, A. Keselman, 2015. Published by Elsevier Ltd. All rights reserved.
The manuscript identifies the challenges and solutions of our work in rolling out a communication training curriculum to teach providers about palliative care communication. Namely, we share our motivation to “go big” by expanding our scope and audience without knowing how to reach the target audience, the trials and tribulations of publicizing our work and recognizing that these efforts would not count towards tenure and promotion, and that flexibility and radical revision were necessary to meet the needs of non-academics. Although engagement is daunting work, we continue to be motivated by the possibility of improving communication in healthcare and to see the bigger picture of benefit for ourselves, our families, providers, and patients.
This essay details lessons learned in the completion of a dissertation on family caregivers. The four central lessons address challenges with scheduling for caregivers, caregiver understanding of their own activities, the culturally situated nature of caregiving, and the importance of advocating for one's research. Each lesson includes context for how the lesson emerged from a significant problem in applied research and tactics for improvement in similar or related work.
Despite the abundance of research on social support, both as a variable in larger studies and as a central focus of examination, there is little consensus about the relationship between social support and health outcomes. Current social support measures typically account only for frequency and size of network, and a paucity of research exists that has explained social support burden, defined as the burden associated with accessing and receiving support from others. We analyzed audio-recorded discussions by hospice family caregivers about their caregiving problems and potential solutions to examine social relationships within networks and identify the processes that influence social support seeking and receiving. Using qualitative thematic analysis, we found that caregivers providing hospice care experience social support burden resulting from perceived relational barriers between friends and family, the inclination to remain in control, recognition of the loss of the patient as a source of social support and guidance in decision making, family dynamics, and decreased availability of emotional support. Social support researchers should consider how the quality of communication and relationships within social networks impacts the provision and subsequent outcomes of social support in varying contexts. Findings from this study suggest that hospice social support resources should be tailored to the caregiver's support needs and include assessment on the type of support to be offered.
