Adult Child-Parent Dyadic Interactions at the End of Life: A Scoping Review

2019 ◽  
Vol 10 (2) ◽  
pp. 175-185 ◽  
Author(s):  
Franziska A Herbst ◽  
Laura Gawinski ◽  
Nils Schneider ◽  
Stephanie Stiel
Keyword(s):  
End Of Life ◽  
Scoping Review ◽  
Psychosocial Support ◽  
Adult Child ◽  
Future Research ◽  
Support Needs ◽  
Parent Communication ◽  
Hand Search ◽  
Descriptive Account ◽  
Highly Sensitive

BackgroundBeing terminally ill affects not only the life of patients but also that of their loved ones. Dyads of adult children and their parents at the end of life may face specific challenges with regard to their relationship and interactions that need to be further examined.AimThe aim was to identify, describe and summarise available evidence on adult child–parent interaction and psychosocial support needs at the end of life. Research gaps in the existing literature are disclosed and recommendations for future research are presented.DesignA type 4 scoping review according to Arksey and O’Malley’s (2005) methodological framework was conducted. The review includes studies regardless of study design and provides a descriptive account of foci of available research.Data sourcesThe PubMed, PsycINFO, CINAHL, Google Scholar and Web of Science databases were searched from inception to 16 August 2018. An additional hand search was conducted. A highly sensitive search strategy was employed to cover all potentially relevant results.ResultsThe authors screened 1832 records by title and abstract, retrieved 216 full-text articles and included 15 studies from the database search. One study was identified by way of hand search. The review identified six major themes: (1) adult child–parent relationship, (2) adult child–parent communication, (3) involvement in caregiving, (4) benefit and burden of caregiving, (5) coping strategies and (6) support and information for caregivers.ConclusionsThe scoping review accentuates the paucity of studies that address both patients’ and their parent/adult child caregivers’ relationship, interaction and psychosocial support needs.

scholarly journals Family-focused practices in addictions: a scoping review protocol

BMJ Open ◽  
2018 ◽  
Vol 8 (1) ◽  
pp. e019433 ◽  
Author(s):  
Toula Kourgiantakis ◽  
Rachelle Ashcroft
Keyword(s):  
Social Services ◽  
Family Involvement ◽  
Scoping Review ◽  
Web Sites ◽  
Addiction Treatment ◽  
Research Policy ◽  
Empirical Studies ◽  
Future Research ◽  
Family Interventions ◽  
Hand Search

IntroductionFamilies are significantly impacted by addictions and family involvement in treatment can reduce the harms and can also improve treatment entry, treatment completion and treatment outcomes for the individual coping with an addiction. Although the benefits of family-focused practices in addictions have been documented, services continue to have an individual focus and research on this topic is also limited. The objective of this study is to map the extent, range and nature of evidence available examining family interventions in addictions and identify gaps to guide future research, policy and practice.Methods and analysisThis is a scoping review using the five-stage framework developed by Arksey and O’Malley. We will include published and unpublished empirical studies focusing on any type of family interventions in addiction treatment between 2000 and the present in English or French. A reviewer will search for literature that meets the inclusion criteria through the following electronic databases: MEDLINE, PsycINFO and Social Services Abstracts. For a comprehensive search, we will also hand-search reference lists, web sites and key journals. Data will be charted and sorted using a thematic analysis approach.Ethics and disseminationThis review will be the first to examine all forms of family-focused practices for both substance use and problem gambling treatment for adults. It will provide information about existing service provisions and gaps in practice. This review can be used to start moving towards the development of best practices for families in addiction treatment. The results will be disseminated through a peer-reviewed journal and at mental health and addiction conferences.

scholarly journals Is preparation for end of life associated with pre-death grief in caregivers of people with dementia?

2020 ◽  
Vol 32 (6) ◽  
pp. 753-763
Author(s):  
Kirsten J. Moore ◽  
Sophie Crawley ◽  
Victoria Vickerstaff ◽  
Claudia Cooper ◽  
Michael King ◽  
...  
Keyword(s):  
Social Support ◽  
End Of Life ◽  
Short Form ◽  
Care Home ◽  
Adult Child ◽  
Educational Interventions ◽  
Future Research ◽  
Cross Sectional ◽  
People With Dementia ◽  
Modifiable Factors

ABSTRACTObjectives:Family caregivers of people with dementia can experience loss and grief before death. We hypothesized that modifiable factors indicating preparation for end of life are associated with lower pre-death grief in caregivers.Design:Cross-sectional.Setting:Caregivers of people with dementia living at home or in a care home.Participants:In total, 150 caregivers, 77% female, mean age 63.0 (SD = 12.1). Participants cared for people with mild (25%), moderate (43%), or severe dementia (32%).Measurements:Primary outcome: Marwit-Meuser Caregiver Grief Inventory Short Form (MMCGI-SF). We included five factors reflecting preparation for end of life: (1) knowledge of dementia, (2) social support, (3) feeling supported by healthcare providers, (4) formalized end of life documents, and (5) end-of-life discussions with the person with dementia. We used multiple regression to assess associations between pre-death grief and preparation for end of life while controlling for confounders. We repeated this analysis with MMCGI-SF subscales (“personal sacrifice burden”; “heartfelt sadness”; “worry and felt isolation”).Results:Only one hypothesized factor (reduced social support) was strongly associated with higher grief intensity along with the confounders of female gender, spouse, or adult child relationship type and reduced relationship closeness. In exploratory analyses of MMCGI-SF subscales, one additional hypothesized factor was statistically significant; higher dementia knowledge was associated with lower “heartfelt sadness.”Conclusion:We found limited support for our hypothesis. Future research may benefit from exploring strategies for enhancing caregivers’ social support and networks as well as the effectiveness of educational interventions about the progression of dementia (ClinicalTrials.gov ID: NCT03332979).

scholarly journals Status, demand and practice models of palliative day-care clinics and day hospices: a scoping review

2021 ◽  
pp. bmjspcare-2021-003171
Author(s):  
Teresa Terjung ◽  
Stephanie Stiel ◽  
Nils Schneider ◽  
Franziska A Herbst
Keyword(s):  
Scoping Review ◽  
Day Care ◽  
Outcome Measurement ◽  
Healthcare Providers ◽  
Patient Characteristics ◽  
Models Of Care ◽  
Future Research ◽  
Discharge Process ◽  
Hand Search ◽  
Practice Models

BackgroundLittle is known about the structure, accessibility, service provision and needs of palliative and hospice day-care in Germany and abroad. Researchers, healthcare providers and policy makers would benefit from a systematic overview.AimThe aim was to identify, describe and summarise available evidence on status, demand and practice models of palliative day-care clinics and day hospices. A secondary aim was to disclose research gaps and present recommendations for clinical practice and future research.DesignThe scoping review followed the methodological framework of Arksey and O’Malley. The analysed publications included studies of varying kinds to describe the current state of the art.Data sourcesUsing a highly sensitive search strategy, the authors searched PubMed, Web of Science Core Collection, CINAHL and Google Scholar within the publication window of inception to 12 June 2020. An additional hand search of the reference lists of the identified review articles was conducted.ResultsThe authors screened the titles and abstracts of 2643 studies, retrieved 197 full texts and included 32 articles in the review. The review identified nine major themes: (1) the referral process, (2) models of care, (3) patient characteristics, (4) demand, (5) the discharge process, (6) perceptions of services, (7) funding and costs, (8) outcome measurement and (9) education.ConclusionsThere is a need for further research to identify groups of patients who would receive the most benefit from palliative and hospice day-care and to determine any necessary revisions in admission criteria.

Bladder and bowel preferences of patients at the end of life: a scoping review

2020 ◽  
Vol 26 (8) ◽  
pp. 432-442
Author(s):  
Nicholas Smith ◽  
Saima Rajabali ◽  
Kathleen F Hunter ◽  
Thane Chambers ◽  
Robin Fasinger ◽  
...  
Keyword(s):  
End Of Life ◽  
Scoping Review ◽  
Patient Preferences ◽  
Symptom Management ◽  
Future Research ◽  
Bowel Symptom ◽  
Outcomes Of Care ◽  
The Many ◽  
Improving Patient Care ◽  
Preferences For Care

Background: Following patient preferences at the end of life should improve outcomes of care, yet patient preferences regarding bladder and bowel care are not often accommodated, as they are not well known in the literature. Aims: This scoping review sought to identify bladder and bowel care preferences of patients at the end of life in published literature. Methods: Papers published in or after 1997 (in English) that focused on adult preferences for bladder and bowel care at the end of life were included. Findings: Scant literature exists on preferences for bladder and bowel care for adult patients at end of life. Further investigation is warranted to arrive at a better understanding of preferences regarding bladder and bowel symptom management. Conclusions: Future research should explore if prioritising the symptoms caused by incontinence, among the many symptoms experienced at the end of life, could be achieved through careful questioning and development of a standardised tool focused on improving patient care and incorporating patient preferences for care.

scholarly journals What is known from the existing literature about self-management of pessaries for pelvic organ prolapse? A scoping review protocol

BMJ Open ◽  
2022 ◽  
Vol 12 (1) ◽  
pp. e055587
Author(s):  
Lucy Dwyer ◽  
Dawn Dowding ◽  
R Kearney
Keyword(s):  
Pelvic Organ Prolapse ◽  
Scoping Review ◽  
Pelvic Organ ◽  
Self Management ◽  
Future Research ◽  
Original Research ◽  
Reference List ◽  
Eligibility Criteria ◽  
Hand Search ◽  
Scoping Reviews

IntroductionPelvic organ prolapse (POP) can be managed with a pessary; however, regular follow-up may deter women from pessary management due to the inconvenience of frequent appointments, as well as preventing pessary users from autonomous decision-making. Pessary self-management, whereby the woman removes and inserts her own pessary may be a solution to these issues. However, there remains a number of uncertainties regarding the potential benefits and risks of pessary self-management. This scoping review aims to map available evidence about the subject of pessary self-management for POP to identify knowledge gaps providing the basis for future research.Methods and analysisThe scoping review will be conducted using the Joanna Briggs Institute scoping review methodology and reported in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines. A search of Medline, CINAHL, Embase and PsycInfo will be undertaken to identify relevant articles which meet the eligibility criteria using the search terms ‘pessary’ and ‘self-management’ or ‘self-care’. A hand search of the reference list of non-original research identified during the search but excluded, will be conducted for additional publications which meet the inclusion and exclusion criteria. Data relevant to the topic of pessary self-management will be extracted and critical appraisal of all included publications undertaken.Ethics and disseminationNo ethical or Health Research Authority approval is required to undertake the scoping review. However, it has been registered with The Open Science Framework (DOI 10.17605/OSF.IO/DNGCP). The findings will inform future research exploring pessary self-management and be disseminated via both a presentation at a national conference and publications in peer reviewed journals.

scholarly journals Intergenerational Engagement in Residential Settings: A Scoping Review of the Literature

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 851-851
Author(s):  
Andrea Gardiola ◽  
Raza Mirza ◽  
Amanda Bull ◽  
Christopher Klinger ◽  
Jessica Hsieh ◽  
...  
Keyword(s):  
Older Adults ◽  
Health Outcomes ◽  
Scoping Review ◽  
Grey Literature ◽  
Age Groups ◽  
Future Research ◽  
Long Term Effects ◽  
Hand Search ◽  
Intergenerational Interactions ◽  
The Impact

Abstract Intergenerational engagement provides a rich environment for people of different ages to come together and exchange life stories, skills, and knowledge. Today, intergenerational interactions are decreasing, however, these exchanges can have positive implications for seniors in residential care homes (RCHs) and younger persons. A scoping review following Arksey and O’Malley’s five-step framework was conducted to investigate the impact of intergenerational engagement and programs (IGPs) on older adults in RCHs. A systematic search of ten electronic databases and hand search of references was carried out; thematic content analysis to established key themes. A total of 1,183 academic and grey literature sources were reviewed, with 66 full-text studies assessed for eligibility. Of these sources, 35 studies met inclusion criteria. Studies highlighted four main themes: 1. Types of IGPs, 2. Psycho-social benefits for older adults and improved status among elders with cognitive impairments, 3. Younger person benefits, suggesting reduced ageism and improved social and communication skills, and 4. Program recommendations, including the need for enthusiastic program facilitators, coordination between facilities, sensitivity training for younger persons, detailed advertisements, and appropriate activities for different age groups. Findings inform future practice and research, highlighting that IGPs are an effective strategy to alleviate negative health outcomes for seniors in RCHs. Future research is needed to evaluate long-term effects and further health outcomes. IGPs provide an opportunity to facilitate purposeful and reciprocal relationships between generations, fostering intergenerational understanding. By studying IGPs and intergenerational interactions, we can better determine practices that meaningfully engage elders in RCHs in Canada.

Are patient portals being used to support palliative and end-of-life care?: A scoping review (Preprint)

2021 ◽  
Author(s):  
M. Pilar Ingle ◽  
Cristina Valdovinos ◽  
Kelsey L. Ford ◽  
Shou Zhou ◽  
Sheana Bull ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
Future Research ◽  
Patient Portal ◽  
Patient Portals ◽  
User Acceptability ◽  
National Coalition ◽  
Meta Analyses ◽  
Hospice And Palliative Care

BACKGROUND Although patient portals are widely used for health promotion, little is known about use of palliative care and end-of-life (PCEOL) portal tools available for patients and caregivers. OBJECTIVE To identify and assess user perspectives of PCEOL portal tools available to patients and caregivers described and evaluated in the literature. METHODS A scoping review of the academic literature directed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review (PRISMA-ScR). We searched three databases. Sources were included if they reported the development or testing of a feature, resource, tool, or intervention, focused on at least one PCEOL domain defined by the National Coalition for Hospice and Palliative Care, targeted adults with serious illness and/or caregivers, and were offered via patient portal tethered to an electronic medical record. Authors independently screened titles and abstracts (N=796) for eligibility. Full texts (N=84) sources were reviewed. Descriptions of the portal tool name, content, targeted population, and reported user acceptability for each tool were abstracted from included sources (N=19). RESULTS Nineteen articles describing 12 tools were included, addressing the following PCEOL domains: ethical/legal (N=5), physical (N=5), and psychological/psychiatric (N=2). No tools for bereavement or hospice were identified. Studies reported high acceptability of tools among users; however, few sources commented on usability among older adults. CONCLUSIONS PCEOL patient portal tools are understudied. As medical care increasingly moves towards virtual platforms, future research should investigate the usability and acceptability of PCEOL patient portals resources and evaluate their impact on health outcomes.

scholarly journals Deaths in Prison Custody: A Scoping Review of the Experiences of Staff and Bereaved Relatives

2020 ◽  
Author(s):  
Audrey Roulston ◽  
Clare McKeaveney ◽  
Margaret Anderson ◽  
Paul McCloskey ◽  
Michelle Butler
Keyword(s):  
Thematic Analysis ◽  
Scoping Review ◽  
Psychosocial Support ◽  
Conflicts Of Interest ◽  
Data Extraction ◽  
Empirical Studies ◽  
Care Needs ◽  
Personal Lives ◽  
Hand Search ◽  
Full Text Review

Abstract Prison populations are growing globally with an increase in older and infirm prisoners, as well as longer prison sentences, meaning more prisoners are likely to die while incarcerated. This scoping review explored the experiences of death in prison custody on staff and relatives. Ovid MEDLINE, Embase, CINAHL and PsycINFO were professionally searched, followed by a hand search. Empirical and non-empirical studies of deaths in prison custody were screened. Data extraction used Arksey and O’Malley’s framework. Thematic analysis was underpinned by Braun and Clarke for identifying, analysing and reporting patterns. From 12,127 citations retrieved, 174 were selected for full-text review and 22 were included in the final scoping review. Thematic analysis revealed four themes: (i) transformative effect, (ii) time delays, (iii) conflicts of interest and (iv) support. Prison staff avoided contaminating their personal lives. Families were distressed by inaccurate and untimely information, inappropriate constraints and poor communication. Staff balanced security and humanitarian needs. Bereaved relatives and staff felt isolated, alienated and unsupported. Unmet advocacy, communication and social care needs, poor end-of-life and bereavement care could be improved through staff training and social work intervention. Staff need psychosocial support, supervision and counselling.

scholarly journals Consensus-based recommendations for psychosocial support measures for parents and adult children at the end of life: results of a Delphi study in Germany

2021 ◽  
Author(s):  
Franziska A. Herbst ◽  
Laura Gawinski ◽  
Nils Schneider ◽  
Stephanie Stiel
Keyword(s):  
End Of Life ◽  
Adult Children ◽  
Delphi Study ◽  
Hospice Care ◽  
Psychosocial Support ◽  
Terminally Ill ◽  
Adult Child ◽  
Free Text ◽  
Care Providers ◽  
Support Measures

Abstract Purpose The availability of psychosocial support measures has a significant impact on the quality of life of terminally ill and dying patients and the burden experienced by their relatives. To date, no intervention has specifically focused on promoting interaction within the dyads of the following: (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children. A national Delphi study was conducted to provide appropriate recommendations for dyadic psychosocial support measures. Methods Recommendations were formulated from qualitative interview data on the experiences and wishes of patients and family caregivers within these two dyads. Experts from palliative and hospice care providers rated the relevance and feasibility of 21 recommendations on two 4-point Likert-type scales, respectively. Additional suggestions for improvement were captured via free text fields. Individual items were considered consented when ≥ 80% of participants scored 1 (strongly agree) or 2 (somewhat agree) regarding both relevance and feasibility. Results A total of 27 experts (35% response rate) completed two Delphi rounds. Following the first round, 13 recommendations were adjusted according to participants’ comments. After the second round, consensus was achieved for all 21 of the initially presented recommendations. Conclusion The Delphi-consented recommendations for parents and adult children at the end of life provide the first guidance for hands-on dyadic psychosocial support measures for parent–adult child relationships, specifically. The next step could involve the structured implementation of the recommendations, accompanied by scientific research. This study was registered on October 27, 2017, with the German Clinical Trials Register (DRKS00013206).

Increasing our understanding of nonphysical suffering within palliative care: A scoping review

2021 ◽  
pp. 1-16 ◽  
Author(s):  
Maxxine Rattner
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
Healthcare Providers ◽  
Palliative Sedation ◽  
Primary Sources ◽  
Future Research ◽  
Social Emotional ◽  
Relief Of Suffering ◽  
Hastened Death

Abstract Objective Nonphysical suffering is emotional, psychological, existential, spiritual, and/or social in nature. While palliative care is a discipline dedicated to the prevention and relief of suffering — both physical and nonphysical — little is known about existing research specific to nonphysical suffering within the context of palliative care. This scoping review helps to fill this gap. Method Three hundred and twenty-eight unique records were identified through a systematic search of three databases (MEDLINE, CINAHL, and PsycINFO). The following keywords were used: (suffering) AND (palliative OR “end of life” OR “end-of-life” OR hospice OR dying OR terminal* ill*). Thirty studies published between 1998 and 2019 met the inclusion criteria. Results Losses, worries, and fears comprise patients’ primary sources of nonphysical suffering. Patients face numerous barriers in expressing their nonphysical suffering to healthcare providers. The idea that patients can choose how they perceive their circumstances, thereby minimizing their nonphysical suffering, is pervasive in the research. The nature of nonphysical suffering experienced by family caregivers and palliative care clinicians is revealed in the review. The unique and sensitive interplay between nonphysical suffering and both palliative sedation and requests for hastened death is also evident. Overall, seven themes can be identified: (i) patients’ experiences of nonphysical suffering; (ii) patient coping mechanisms; (iii) efforts to measure nonphysical suffering; (iv) palliative sedation; (v) requests for hastened death; (vi) family suffering; and (vii) clinician suffering. Significance of results This is the first scoping review to map palliative care's research specific to suffering that is social, emotional, spiritual, psychological, and/or existential in nature. Its findings expand our understanding of the nature of nonphysical suffering experienced by patients, families, and palliative care clinicians. The review's findings have significant implications for front-line practice and future research.

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