A Qualitative Evidence Synthesis Review of Longitudinal Qualitative Research in Gerontology.

BACKGROUND AND OBJECTIVES: Gerontologists have long been interested in longitudinal qualitative research (LQR), yet ambiguity remains about best practices. The purpose of this review was to conduct a qualitative evidence synthesis to identify strengths and limitations in existing gerontological LQR. RESEARCH DESIGN AND METHODS: We searched for studies published in English before September 2017, using longitudinal qualitative methods and focusing on gerontology. We searched the following databases: PubMed and ProQuest. This was followed up by a snowball search to identify additional LQR articles that were not gerontologically focused but provided conceptual or methodological information to enhance gerontological LQR. Article titles and abstracts were reviewed, and selected articles were independently evaluated by all authors and summarized in a descriptive matrix based on design, analysis, and strengths and limitations. RESULTS: Our literature search resulted in 225 articles, which was then narrowed to 71 articles from 47 different journals based on our inclusion/exclusion criteria. LQR in gerontology varies considerably by study design and analysis approach. LQR design considerations involve number of time points and duration; rapport and retention; and consistent or different sampling, data collection, and measures. LQR analysis considerations involve synchronic and diachronic approaches, consistent or evolving coding, and individual- or group-level analysis. Gerontological LQR articles vary in the extent to which they address special aging considerations. DISCUSSION AND IMPLICATIONS: This review indicates that there are areas where gerontological LQR can be strengthened going forward. We provide researchers with strategies to improve LQR rigor in our field and beyond.

Pursuing a Desired Future: Continuity and Change in a Long-Term-Care Community.

New ways of planning, assessing, and measuring cultural change are needed in long-term care. Much effort is focused on person-centered care; less attention is paid to achieving localized change. Long-term-care communities need innovative approaches for identifying local cultural features to preserve and others to reconfigure. This case study involves applied anthropologists working with four stakeholder groups-residents, staff, family members, and volunteers-to document views of their "culture story" and conceptualize a cultural ideal for their community. Based on strengths and weaknesses from their culture story, specific recommendations were made to maintain their strong relationship focus, expand community outreach, and improve staff relations. Incorporating "insider" views of the past, present, and imagined future and building on current "best practices" of the culture-change movement are two distinctive but complementary approaches for motivating and managing cultural change.

Conceptual and design issues in instrument development for research with bereaved parents.

Many childhood deaths in the United States occur in pediatric intensive care units (PICUs) and parents have special needs in this death context. As an interdisciplinary research team, we discuss conceptual and design issues encountered in creating a new instrument, the Bereaved Parent Needs Assessment-PICU, for assessing parents' needs in this setting. Using a qualitative approach, our team previously explored how the culture and related ways of providing care in one urban Midwestern children's hospital PICU affected parents' bereavement needs and experiences. We describe using this qualitative foundation in the development of a new quantitative instrument to more widely validate and measure bereaved parents' needs around the time of a child's death across multiple PICUs. We highlight a series of issues that warrant consideration in designing a research instrument for this vulnerable population including setting and context, format and content, temporality, recruitment, and content expertise.

The Bereaved Parent Needs Assessment: a new instrument to assess the needs of parents whose children died in the pediatric intensive care unit*.

OBJECTIVES: To evaluate the reliability and validity of the Bereaved Parent Needs Assessment, a new instrument to measure parents' needs and need fulfillment around the time of their child's death in the pediatric intensive care unit. We hypothesized that need fulfillment would be negatively related to complicated grief and positively related to quality of life during bereavement. DESIGN: Cross-sectional survey. SETTING: Five U.S. children's hospital pediatric intensive care units. SUBJECTS: Parents (n = 121) bereaved in a pediatric intensive care unit 6 months earlier. INTERVENTIONS: Surveys included the 68-item Bereaved Parent Needs Assessment, the Inventory of Complicated Grief, and the abbreviated version of the World Health Organization Quality of Life questionnaire. Each Bereaved Parent Needs Assessment item described a potential need and was rated on two scales: 1) a 5-point rating of importance (1 = not at all important, 5 = very important) and 2) a 5-point rating of fulfillment (1 = not at all met, 5 = completely met). Three composite scales were computed: 1) total importance (percentage of all needs rated ≥4 for importance), 2) total fulfillment (percentage of all needs rated ≥4 for fulfillment), and 3) percent fulfillment (percentage of important needs that were fulfilled). Internal consistency reliability was assessed by Cronbach's α and Spearman-Brown-corrected split-half reliability. Generalized estimating equations were used to test predictions between composite scales and the Inventory of Complicated Grief and World Health Organization Quality of Life questionnaire. MEASUREMENTS AND MAIN RESULTS: Two items had mean importance ratings <3, and 55 had mean ratings >4. Reliability of composite scores ranged from 0.92 to 0.94. Total fulfillment was negatively correlated with Inventory of Complicated Grief (r = -.29; p < .01) and positively correlated with World Health Organization Quality of Life questionnaire (r = .21; p < .05). Percent fulfillment was also significantly correlated with both outcomes. Adjusting for parent's age, education, and loss of an only child, percent fulfillment remained significantly correlated with Inventory of Complicated Grief but not with World Health Organization Quality of Life questionnaire. CONCLUSIONS: The Bereaved Parent Needs Assessment demonstrated reliability and validity to assess the needs of parents bereaved in the pediatric intensive care unit. Meeting parents' needs around the time of their child's death may promote adjustment to loss.

Parental bereavement needs in the pediatric intensive care unit: review of available measures.

BACKGROUND: Pediatric intensive care units (PICUs) are highly technological settings in which advanced care is used to restore health to critically ill children; however, they are also places where children die. Understanding the needs of parents bereaved in this setting is essential for better family care. OBJECTIVE: To systematically review the extant literature to identify instruments potentially useful for assessing the needs of parents bereaved in the PICU. METHODS: We searched PubMed™, CINAHL™, and Health and Psychosocial Instruments™ for tools to assess family needs during a relative's hospitalization. From 357 abstracts, 96 articles were reviewed that described 31 instruments. Fifteen instruments were selected based on their (1) use with parents and/or the bereaved, (2) use in PICU, neonatal intensive care, or pediatric wards, (3) measurement of family needs or related constructs, and (4) published psychometrics. Need-related constructs included satisfaction with family care and environmental stress since these have been related to met and unmet needs, respectively. RESULTS: No instruments specifically designed to assess the needs of parents bereaved in the PICU were identified. Most tools reviewed showed validity and reliability in the populations and settings for which the tools were intended; however, validity and reliability were not established for parents bereaved in the PICU. No tools addressed the full range of needs for parents bereaved in the PICU. CONCLUSIONS: A new instrument is needed to adequately assess the needs of parents bereaved in the PICU. Patient conditions, illness trajectories, and life course perspectives must be considered in designing a new tool.

Examining the needs of bereaved parents in the pediatric intensive care unit: a qualitative study.

The pediatric intensive care unit (PICU) is a high-tech setting aimed at restoring health to critically ill children. When childhood death occurs in the PICU, it constitutes a special context for parent bereavement. The purpose of this interdisciplinary qualitative research was to gain a deeper understanding of parents' needs around the time of their child's death in the PICU. Through interviews and focus groups with bereaved parents and hospital chaplains, categories of parents' needs emerged. Deeper understanding of parents' needs will allow health professionals to better support parents during bereavement as well as to provide more customized care.

Implementing a triangulation protocol in bereavement research: a methodological discussion.

Triangulation is a comparative strategy for examining data that strengthens qualitative and multi-method research. Despite the benefits of triangulation noted in the research methods literature, few concrete models for operationalization of protocols exist. Lack of documentation of explicit triangulation procedures is especially true in the area of bereavement research. This article describes how an interdisciplinary research team implemented a triangulation protocol in a study of the needs of bereaved parents. Triangulation enabled the integration of diverse data sources, methods, and disciplinary perspectives. These processes yielded a more meaningful typology of bereaved parents' needs than would have otherwise been possible. Extending the use of triangulation will enhance multi-faceted understandings of bereavement.

Exploring parents' environmental needs at the time of a child's death in the pediatric intensive care unit.

OBJECTIVE: Many childhood deaths in the United States occur in intensive care settings. The environmental needs of parents experiencing their child's death in a pediatric intensive care unit must be understood to design facilities that comfort at the time of death and promote healing after loss. The purpose of this study is to explore parents' environmental needs during their child's hospitalization and death in the pediatric intensive care unit. DESIGN: Descriptive qualitative study. SETTING: A university-affiliated children's hospital. PARTICIPANTS: Thirty-three parents of 26 children who died in a pediatric intensive care unit. INTERVENTIONS: Semistructured, in-depth, videotaped interviews were conducted with parents 2 yrs after their child's death. Interviews were analyzed by an interdisciplinary research team using established qualitative methods. MEASUREMENTS AND MAIN RESULTS: Environmental themes identified through parent interviews included 1) places remembered, 2) spatial characteristics, 3) services for daily living, 4) parent caregiving, 5) access, and 6) presence of people. Places remembered by parents in most detail included the pediatric intensive care unit patient rooms and waiting room. Spatial characteristics pertaining to these places included the need for privacy, proximity, adequate space, control of sensory stimuli, cleanliness, and safety. Parents needed facilities that enabled self-care such as a place to eat, shower, and sleep. Parents also needed access to their child and opportunities to participate in their child's care. Parents described the physical presence of people, such as those who provide professional and personal support, as another important environmental need. CONCLUSIONS: The pediatric intensive care unit environment affects parents at the time of their child's death and produces memories that are vivid and long lasting. Positive environmental memories can contribute to comfort during bereavement whereas negative memories can compound an already devastating experience. Parents' perspectives of the pediatric intensive care unit environment can provide insight for adapting existing spaces and designing new facilities.

Life as death scholars: passion, personality, and professional perspectives.

In death-averse American society, the field of thanatology is often socially and academically isolating. The purpose of this article is to describe the experiences of a group of death scholars and share insights gained as members of an interdisciplinary team. They discuss the ways in which they have created a special "safe" space for death study collaboration. The melding of their individual passions, personalities, and professional perspectives has allowed them to form a productive and satisfying work environment. Additional discourse in this field is needed on the nature and processes of such death-studies groups.

Special considerations in conducting bereavement focus groups.

Focus groups conducted with grieving people pose special challenges. However, this method can be successfully used in bereavement research especially when group interaction is central to the research aim. This article builds on key articles discussing ethical, methodological, logistical, and analytical issues in conducting focus groups with vulnerable populations (Owen, 2001; Seymour, Bellamy, Gott, Ahmedzai, & Clark, 2002). For bereaved people, vulnerability stems from heightened potential for harm by virtue of participation in sensitive, personal exploration of death-related experiences. We discuss reasons for selecting focus group methods and our experiences with planning and implementing focus groups with bereaved people. Issues found to be highly salient in our work include: team composition, participant recruitment, creating the environment, starting and ending the group, language and listening, managing emotional discussions and time, and analytic considerations. Recommendations are made for effectively using focus groups to generate new knowledge in bereavement research.

The spiritual needs of parents at the time of their child's death in the pediatric intensive care unit and during bereavement: a qualitative study.

OBJECTIVE: Death is common in pediatric intensive care units. A child's death can shatter parents' personal identities, disrupt their relationships, and challenge their worldviews. Spirituality is a human characteristic that engenders transcendence; seeks meaning, purpose, and connection to others; and helps to construct a coherent worldview. Greater attention to spiritual needs may help parents cope with their loss. Our objective is to gain a deeper understanding of parents' spiritual needs during their child's death and bereavement. DESIGN: Prospective, qualitative study. SETTING: University-affiliated children's hospital. PARTICIPANTS: Thirty-three parents of 26 children who died in the pediatric intensive care unit between January 1, 1999, and August 31, 2000. INTERVENTIONS: Semistructured, in-depth, videotaped interviews with parents 2 yrs after their child's death. MEASUREMENTS AND MAIN RESULTS: The main spiritual need described by parents was that of maintaining connection with their child. Parents maintained connection at the time of death by physical presence. Parents maintained connection after the death through memories, mementos, memorials, and altruistic acts such as organ donation, volunteer work, charitable fund raising, support group development, and adoption. Other spiritual needs included the need for truth; compassion; prayer, ritual, and sacred texts; connection with others; bereavement support; gratitude; meaning and purpose; trust; anger and blame; and dignity. CONCLUSIONS: Bereaved parents have intense spiritual needs. Health care providers can help to support parents' spiritual needs through words and actions that demonstrate a caring presence, impart truth, and foster trust; by providing opportunity to stay connected with the child at the time of death; and by creating memories that will bring comfort in the future.