Photovoice: a review of the literature in health and public health
Humans; Health Policy; Health Education; Consumer Participation; Community Health Services; Public Health; Outcome and Process Assessment (Health Care); Photography; health promotion; Community-Based Participatory Research
Although a growing number of projects have been implemented using the community-based participatory research method known as photovoice, no known systematic review of the literature on this approach has been conducted to date. This review draws on the peer-reviewed literature on photovoice in public health and related disciplines conducted before January 2008 to determine (a) what defines the photovoice process, (b) the outcomes associated with photovoice, and (c) how the level of community participation is related to photovoice processes and outcomes. In all, 37 unduplicated articles were identified and reviewed using a descriptive coding scheme and Viswanathan et al.'s quality of participation tool. Findings reveal no relationship between group size and quality of participation but a direct relationship between the latter and project duration as well as with getting to action. More participatory projects also were associated with long-standing relationships between the community and outside researcher partners and an intensive training component. Although vague descriptions of project evaluation practices and a lack of consistent reporting precluded hard conclusions, 60% of projects reported an action component. Particularly among highly participatory projects, photovoice appears to contribute to an enhanced understanding of community assets and needs and to empowerment.
2010
Catalani C; Minkler M
Health Education & Behavior
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1090198109342084" target="_blank" rel="noreferrer">10.1177/1090198109342084</a>
Evaluating Palliative Care Resources Available to the Public Using the Internet and Social Media
Palliative Care; Quality of Life; Human; Emotions; Health Education; Medline; Thematic Analysis; Search Engines; Facebook; Cross Sectional Studies; Health Information Evaluation; Information Seeking Behavior; Internet Utilization; Social Media Utilization; Twitter; Videorecording; World Wide Web
Background: Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. Aim: To identify resources on the Internet and social media regarding palliative care and evaluate the information conveyed. Design: A cross-sectional study of “palliative care” search results. Setting: Top 10 Google websites, top 10 most viewed YouTube videos, and social media platforms, Facebook and Twitter, were searched. Results: The most popular Google websites were mostly from national organizations promoting palliative care, whose definitions of palliative care consistently mention “quality of life” and “relief from symptoms and stress.” None of the websites mentioned children, and 77% cited palliative care as treatment for cancer with less focus on other diseases. No personal stories were included in Google websites, while 60% of YouTube videos included personal stories. Five main themes were generated from 266 YouTube video comments analyzed. The most common theme was emotionality, of which 91% were positive statements. Facebook and Twitter were mostly used by health-care professionals and not the public. Conclusions: Palliative care resources are mostly positive and consistent with the current definition of palliative care. Major Internet search engines such as Google and YouTube provide valuable insight into information the public receives about palliative care. Future development of Internet resources on palliative care should consider including children and emphasizing palliative care for all life-limiting illnesses.
Claudio CH; Dizon ZB; October TW
American Journal of Hospice & Palliative Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1177/1049909118763800" target="_blank" rel="noreferrer noopener">10.1177/1049909118763800</a>
Exploring knowledge and perceptions of palliative care to inform integration of palliative care education into cystic fibrosis care
adolescent; adult; article; female; human; male; palliative therapy; clinical article; palliative care; health care personnel; priority journal; caregiver; parent; perception; communication; semi structured interview; adolescence; attitude to health; cystic fibrosis; health education; lung fibrosis; patient education; qualitative analysis
Background: Individuals with cystic fibrosis (CF) face the challenges of managing a chronic, progressive disease. While palliative care is a standard of care in serious illnesses, there are no guidelines for its incorporation into CF care. Patients with CF, caregivers, and CF care providers may lack knowledge about palliative care and perceive barriers to integrated care. Objective(s): To: 1) explore knowledge and perceptions of palliative care among patients with CF, caregivers, and CF care providers; 2) solicit opinions about incorporating palliative care into routine CF care; and 3) solicit recommendations for CF-specific palliative care education for patients and caregivers. Method(s): We conducted semi-structured interviews with adult patients with CF, parents of adolescents with CF, and CF care providers to assess knowledge and perceptions of palliative care. Discussion included suggestions for palliative care education and integration into CF care. The sample was characterized using summary statistics. Key themes were identified using qualitative content analysis. Result(s): Ten patients with CF, ten parents, and eight CF care providers participated. Many had minimal knowledge of palliative care and endorsed the association with end of life as a barrier to palliative care, but after learning more about palliative care, thought it could be helpful, and should be introduced earlier. Conclusion(s): In this single center study, many patients with CF, caregivers, and providers lacked knowledge about palliative care. These findings warrant replication in a larger, multisite study to inform palliative care educational interventions as a step toward consistent integration of palliative care into routine CF care. Copyright � 2018 Wiley Periodicals, Inc.
Dellon E P; Helms S W; Hailey C E; Shay R; Carney S D; Schmidt H J; Brown D E; Prieur M G
Pediatric Pulmonology
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/ppul.24073" target="_blank" rel="noreferrer noopener">10.1002/ppul.24073</a>
Parental stress and burden following traumatic brain injury amongst children and adolescents.
Child; Female; Humans; Male; Adult; England; Questionnaires; Follow-Up Studies; Health Status; Longitudinal Studies; Mental Health; Cost of Illness; Analysis of Variance; Health Education; Family Health; Family Characteristics; Stress; adolescent; Preschool; Non-U.S. Gov't; Research Support; Adaptation; Psychological; Comparative Study; Parents/psychology; poverty; Brain Injuries/economics/psychology; Psychological/etiology
PRIMARY OBJECTIVES: To assess parental stress following paediatric traumatic brain injury (TBI), and examine the relationship between self-reported problems, parental stress and general health. RESEARCH DESIGN: Parents of 97 children admitted with a TBI (49 mild, 19 moderate, 29 severe) to North Staffordshire National Health Service Trust, and parents of 31 uninjured children were interviewed and assessed. METHODS AND PROCEDURES: Structured interviews were carried out with families, and parents assessed on the Parenting Stress Index (PSI/SF) and General Health Questionnaire (GHQ-12) at recruitment, and repeated 12 months later. MAIN OUTCOMES AND RESULTS: Forty parents (41.2%) of children with TBI exhibited clinically significant stress. Regardless of injury severity, parents of injured children suffered greater stress than control parents as measured by the PSI/SF (p = 0.001). There was a highly significant relationship between number of problems reported and level of parental stress (p = 0.001). Financial burden was related to severity of TBI. At follow-up, one third of parents of children with severe TBI scored > or =18 on the GHQ-12, signifying poor psychological health. CONCLUSIONS: The parents of a child with serious TBI should be screened for abnormal levels of stress. Parental stress and family burden may be alleviated by improved information, follow-up and support.
2003
Hawley CA; Ward AB; Magnay AR; Long J
Brain Injury
2003
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1080/0269905021000010096" target="_blank" rel="noreferrer">10.1080/0269905021000010096</a>
Benefits of Early Referral to Pediatric Palliative Care for a Child With a Rare Disease
Palliative Care; Decision Making; Intensive Care Units; Referral and Consultation; Mutation; Child; Male; Pain Management; Intellectual Disability; Health Education; Parental Attitudes; Pediatric; Pediatric Care; Connective Tissue Diseases Diagnosis; Connective Tissue Diseases Familial and Genetic In Infancy and Childhood; Connective Tissue Diseases Symptoms; Connective Tissue Diseases Therapy In Infancy and Childhood; Dyspnea Drug Therapy; Face Pathology; Family Education; Fibrosis; Morphine Therapeutic Use; Clinical; Muscle; Skeletal Abnormalities
The article outlines the benefits of palliative care supporting the child and family with attention to individualized symptom management, improved communication, and support making difficult decisions. Topics mentioned include the research program Care4Rare at the Children's Hospital of Eastern Ontario, the importance of finding a name or a genetic difference or a cause for future family planning, and the role of morphine for symptom management.
Vadeboncoeur C; McHardy M
Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2017-3417" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-3417</a>
Empowerment through photo novella: portraits of participation
Child; Female; Humans; Male; Adult; Communication; Socioeconomic Factors; Cross-Cultural Comparison; China; Health Education; Power (Psychology); Preschool; Non-U.S. Gov't; Research Support; infant; Comparative Study; Developing Countries; Health Policy/trends; Life Style; Demographic Factors; Population; Population Characteristics; Photography; Asia; Community Participation; Eastern Asia; Economic Factors; Films; Health Services Needs and Demand/trends; Mass Media; Organization And Administration; Rural Health/trends; Rural Population--women; Summary Report; Women's Health Services/trends; Women's Status
Photo novella does not entrust cameras to health specialists, policymakers, or professional photographers, but puts them in the hands of children, rural women, grassroots workers, and other constituents with little access to those who make decisions over their lives. Promoting what Brazilian educator Paulo Freire has termed "education for critical consciousness," photo novella allows people to document and discuss their life conditions as they see them. This process of empowerment education also enables community members with little money, power, or status to communicate to policymakers where change must occur. This paper describes photo novella's underpinnings: empowerment education, feminist theory, and documentary photography. It draws on our experience implementing the process among 62 rural Chinese women, and shows that two major implications of photo novella are its contributions to changes in consciousness and informing policy.; PIP: Contrary to the traditional approach of relying upon photographic images taken by health specialists, policymakers, and professional photographers to document what transpires in a particular community or subpopulation, photo novella encourages children, rural women, grassroots workers, and other constituents with little access to decision-makers to take their own photographs of life as they see it. This process of empowerment education enables community members with little money, power, or status to communicate to policymakers where change must occur. This paper describes photo novella's foundation in empowerment education, feminist theory, and documentary photography. It draws upon experience implementing the process among 62 rural Chinese women, highlighting the ability of photo novella to change consciousness and inform policy.
1994
Wang C; Burris MA
Health Education Quarterly
1994
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Journal Article
<a href="http://doi.org/10.1177/109019819402100204" target="_blank" rel="noreferrer">10.1177/109019819402100204</a>
The experiences of Chinese family members of terminally ill patients - a qualitative study
Female; Humans; Male; Grief; Adult; Questionnaires; Aged; Middle Aged; Professional-Family Relations; Health Services Needs and Demand; Qualitative Research; Nursing Methodology Research; Health Education; Nursing Staff; Practice; adolescent; 80 and over; Adaptation; Psychological; Attitudes; Health Knowledge; social support; Anger; Attitude to Death/ethnology; Hong Kong; Hospital/psychology; Nurse's Role/psychology; Attitude to Health/ethnology; Family/ethnology; Palliative Care/organization & administration/psychology
AIM: To describe and understand the experiences of Chinese family members of terminally ill patients during the end of life process in a palliative care unit. BACKGROUND: Palliative care aims to provide care to dying patients and their family members. Skillful interventions are necessary to help family members cope with the impending death of the patient and maintain their emotional equilibrium. Hence, it is important to understand the experiences of family members of palliative care. DESIGN: A phenomenological study was conducted. Data were collected by semi-structured interviews. We interviewed a purposive sample of 20 family members of terminally ill patients in a palliative care unit in Hong Kong. The data were analysed following Colaizzi's phenomenological methodology. RESULTS: Family members experienced anticipatory grief, with reactions that included anger, unease, sadness and helplessness. This was particularly acute when the patient was first admitted to the palliative care unit. However, the family members quickly accepted the reality and committed themselves to the care of the patient, seeking informational and emotional support from the nurses. The families wanted to be assured that the patient had been offered good care and suffered no pain. It was considered important to be with the patient during the dying process. CONCLUSION: This study demonstrated that Chinese family members were committed to the care of the patients in the palliative care unit. Cultural beliefs played a part in influencing family emotions and concerns. RELEVANCE TO CLINICAL PRACTICE: This study offers a direction for family interventions that acknowledge the reactions of family members to the admission of a patient to a palliative care unit. It highlights that families need active informational and emotional support from nurses.
2007
Wong MS; Chan SW
Journal Of Clinical Nursing
2007
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Journal Article
<a href="http://doi.org/10.1111/j.1365-2702.2007.01943.x" target="_blank" rel="noreferrer">10.1111/j.1365-2702.2007.01943.x</a>