scholarly journals ‘She Can’t Support Me Because She’s so Old’: A Mixed-Methods Study of Support Experiences and Needs in Adult Child–Parent Dyads at the End of Life

2021 ◽  
pp. 003022282110087
Author(s):  
Franziska A. Herbst ◽  
Laura Gawinski ◽  
Nils Schneider ◽  
Stephanie Stiel
Keyword(s):  
Mixed Methods ◽  
End Of Life ◽  
Family Caregivers ◽  
Adult Children ◽  
Qualitative Interviews ◽  
Terminally Ill ◽  
Adult Child ◽  
Self Report ◽  
Children And Parents ◽  
Parent Caregivers

Little is known about support experiences and needs in the dyads of (1) terminally ill adult children and their parent caregivers and (2) terminally ill parents and their adult child caregivers. The current study aimed at investigating the experiences and needs of adult children and parents in end of life situations regarding their provision and receipt of support. The study employed a convergent parallel mixed-methods design, combining explorative qualitative interviews with the quantitative self-report Berlin Social Support Scales. Sixty-five patients (dyad 1: 19; dyad 2: 46) and 42 family caregivers (dyad 1: 13; dyad 2: 29) participated in the study (02/2018–11/2019). Results show that ill adult children felt less (well) supported than ill parents. Parent caregivers were often limited in the support they could provide, due to their age and health conditions. Hypotheses were deduced from patients’ and family caregivers’ notions to inform dyad-specific recommendations for support interventions.

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).

scholarly journals PERSPECTIVES ON SETTING GOALS OF CARE AMONG HOSPICE PATIENTS WITH HEART FAILURE, THEIR FAMILIES, AND HEALTHCARE TEAM

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S791-S792
Author(s):  
Dawon Baik ◽  
David Russell ◽  
Lizeyka Jordan ◽  
Frances Dooley ◽  
Ruth Masterson Creber
Keyword(s):  
Heart Failure ◽  
End Of Life ◽  
Family Caregivers ◽  
Qualitative Interviews ◽  
Active Listening ◽  
Healthcare Team ◽  
Goals Of Care ◽  
For Profit ◽  
Care Plans ◽  
Life Trajectory

Abstract Older adults with heart failure (HF) face many end-of-life care issues. Shared decision making (SDM) in hospice is an important process that allows HF patients and their family caregivers to discuss their preferences on goals of care (GOC) with their healthcare team. Yet, little research has explored how the values and preferences of HF patients and their family are integrated into their care plans through SDM process. This presentation examines facilitators and barriers to setting GOC among hospice HF patients. Qualitative interviews were conducted with HF patients/family caregivers (n=7) and providers (n=32) at a large not-for-profit hospice agency. Several facilitators emerged: building trust, active listening, helping patients and family caregivers understand hospice and prognosis. Barriers included acceptance, family conflict, language discordance between patients and providers and lack of communication about care transition. Findings confirmed the need for individually-tailored goal-setting approaches to navigating the end-of-life trajectory among HF patients.

scholarly journals Applying Human-centered Design to Maximize Acceptability, Feasibility, and Usability of Mobile Technology Supervision in Kenya: A Mixed Methods Pilot Study Protocol

2020 ◽  
Author(s):  
Noah Triplett ◽  
Sean Munson ◽  
Anne Mbwayo ◽  
Teresia Mutavi ◽  
Bryan Weiner ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Mobile Technology ◽  
Qualitative Interviews ◽  
Pilot Trial ◽  
Scale Up ◽  
Task Shifting ◽  
Self Report ◽  
Future Research ◽  
Human Centered Design ◽  
Lay Counselors

Abstract Background: Although research continues to support task-shifting as an effective model of delivering evidence-based practices (EBPs), little scholarship has focused how to scale up and sustain task-shifting in low- and middle-income countries, including how to sustainably supervise lay counselors. Ongoing supervision is critical to ensure EBPs are delivered with fidelity; however, the resources and expertise required to provide ongoing supervision may limit the potential to scale up and sustain task shifting. Opportunities may exist to leverage mobile technology to replace or supplement in-person supervision in low-resource contexts, but contextual variables, such as network connectivity and lay counselor preferences surrounding mobile technology, must be examined and considered when designing and implementing mobile technology supervision.Methods: This study builds from an existing randomized trial in Kenya, wherein teachers and community health volunteers have been trained to provide trauma-focused cognitive behavioral therapy as lay counselors. The study will use an iterative and mixed methods approach, with qualitative interviews and a Human-Centered Design (HCD) workshop informing a non-randomized pilot trial. Semi-structured interviews will be conducted with lay counselors and supervisors to understand how mobile technology is currently being used for supervision and determine the barriers and facilitators to mobile technology supervision. Data from these interviews will inform an HCD workshop, where lay counselors and supervisors “re-design” supervision to most effectively leverage mobile technology. Workshop participants will also participate in focus groups to gather perceptions on the use of HCD techniques. The final outcome of the workshop will be a set of refined workflows, which will be tested in a mixed method, nonrandomized pilot with newly trained lay counselors and existing supervisors. The pilot trial will evaluate the acceptability, feasibility, and usability of mobile technology supervision through self-report questionnaires as well as perceptions of effectiveness through qualitative interviews with a subset of lay counselors and all supervisors.Discussion: This study will provide a launching point for future research on supervision and methods to engage stakeholders to design and tailor interventions and implementation supports to fit low-resourced contexts.

scholarly journals Parents’ experiences of abuse by their adult children with drug problems

2019 ◽  
Vol 37 (1) ◽  
pp. 69-85 ◽  
Author(s):  
Bengt Svensson ◽  
Torkel Richert ◽  
Björn Johnson
Keyword(s):  
Drug Use ◽  
Adult Children ◽  
Emotional Abuse ◽  
Physical Violence ◽  
Qualitative Interviews ◽  
Adult Child ◽  
Well Being ◽  
Drug Problems ◽  
Parents Experiences ◽  
Parent Child

Aims: To examine parents’ experiences of abuse directed at them by their adult children with drug problems. Material and Method: The material consists of 32 qualitative interviews on child-to-parent abuse with 24 mothers and eight fathers. The interviewees had experienced verbal abuse (insults), emotional abuse (threats), financial abuse (damage to property and possessions) and physical abuse (physical violence). Findings: In the parents’ narratives, the parent-child interaction is dominated by the child’s destructive drug use, which the parents are trying to stop. This gives rise to conflicts and ambivalence. The parents’ accounts seem to function as explaining and justifying their children’s disruptive behavior in view of the drug use. The fact that an external factor - drugs - is blamed seems to make it easier to repair the parent-child bonds. The parents differentiate between the child who is sober and the child who is under the influence of drugs, that is, between the genuine child and the fake, unreal child. The sober child is a person that the parent likes and makes an effort for. The child who is on drugs is erratic, at times aggressive and self-destructive. Conclusions: The interviewed parents’ well-being is perceived as directly related to how their children’s lives turn out. The single most important factor in improving the parents’ situation is to find a way for their adult child to live their lives without drug problems.

The well-being of adult children while caring for a parent in home hospice: Evaluation of an automated remote monitoring and coaching system.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 222-222
Author(s):  
Kathi Mooney ◽  
Patricia Berry ◽  
Jacquee Blaz ◽  
Gary Donaldson
Keyword(s):  
Family Caregivers ◽  
Adult Children ◽  
Remote Monitoring ◽  
Negative Binomial ◽  
Hospice Care ◽  
Adult Child ◽  
Well Being ◽  
Poor Sleep ◽  
Significant Finding ◽  
At Home

222 Background: Health and well-being often deteriorates for family caregivers providing home hospice care. This includes adult children managing multiple demands while supporting their parent to remain at home. Automated remote monitoring of patient symptoms has shown promise in home cancer care and could be extended for monitoring and supporting the wellbeing of adult child caregivers (ACC) providing care to their parent at home. Methods: In a RCT, 97 ACCs were monitored using a telephone based automated reporting and coaching system, and randomly assigned to the ACC care intervention (Rx) (N = 51) or usual care (UC) (N = 46). All ACCs were asked to call the system daily reporting presence and severity (0-10 scale) of their own fatigue, poor sleep, depressed mood, anxiety and interference with normal activities. The Rx ACCs received automated tailored coaching based on reported patterns of moderate to severe symptom levels and alert reports were also sent to their hospice nurse. Results: ACCs were females (78%) with a mean age of 51. There were no differences between groups on any demographic or baseline measures. Utilizing negative binomial modeling, Rx ACCs had significantly fewer days/week of moderate-severe symptoms overall (.6 vs 2.4, p < .001) and for each individual symptom (all p < .001). Among those attempting to maintain work, Rx ACCs were able to work 80% of work days and UC ACCs worked 68% of work days. Six weeks after their parent’s death, there was a statistical trend (p = .07) for Rx ACCs to be less depressed than UC ACCs (11.94 vs 18.04). This is a clinically significant finding as UC ACCs’ CESD scores were at the clinically actionable level ( > 16) for referral for evaluation of depression. Rx ACCs’ CESD scores had dropped an average of 1.37 points below their baseline whereas UC ACCs’ scores had increased an average of 3.86 points from baseline at 6 weeks post death. Conclusions: Automated remote monitoring and coaching for adult child family caregivers offers impressive benefit in reducing the physical burden and psychosocial distress of caregiving during and after parental hospice care. Clinical trial information: NCT02112461.

scholarly journals Interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes: A mixed-methods systematic review

2021 ◽  
pp. 026921632110667
Author(s):  
Silvia Gonella ◽  
Gary Mitchell ◽  
Laura Bavelaar ◽  
Alessio Conti ◽  
Mariangela Vanalli ◽  
...  
Keyword(s):  
Systematic Review ◽  
Mixed Methods ◽  
Nursing Homes ◽  
End Of Life ◽  
Family Caregivers ◽  
Cultural Context ◽  
Integrated Approach ◽  
Advanced Dementia ◽  
People With Dementia ◽  
Support Family

Background: Most people with dementia transition into nursing homes as their disease progresses. Their family caregivers often continue to be involved in their relative’s care and experience high level of strain at the end of life. Aim: To gather and synthesize information on interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes and provide a set of recommendations for practice. Design: Mixed-Methods Systematic Review (PROSPERO no. CRD42020217854) with convergent integrated approach. Data sources: Five electronic databases were searched from inception in November 2020. Published qualitative, quantitative, and mixed-method studies of interventions to support family caregivers of people with advanced dementia at the end of life in nursing home were included. No language or temporal limits were applied. Results: In all, 11 studies met the inclusion criteria. Data synthesis resulted in three integrated findings: (i) healthcare professionals should engage family caregivers in ongoing dialog and provide adequate time and space for sensitive discussions; (ii) end-of-life discussions should be face-to-face and supported by written information whose timing of supply may vary according to family caregivers’ preferences and the organizational policies and cultural context; and (iii) family caregivers should be provided structured psychoeducational programs tailored to their specific needs and/or regular family meetings about dementia care at the end of life. Conclusion: The findings provide useful information on which interventions may benefit family caregivers of people with advanced dementia at the end of life and where, when, and how they should be provided.

scholarly journals Barriers to Optimal End-of-Life Care for Adolescents and Young Adults With Cancer: Bereaved Caregiver Perspectives

2021 ◽  
Vol 19 (5) ◽  
pp. 528-533
Author(s):  
Jennifer W. Mack ◽  
Erin R. Currie ◽  
Vincent Martello ◽  
Jordan Gittzus ◽  
Asisa Isack ◽  
...  
Keyword(s):  
Young Adults ◽  
End Of Life ◽  
Family Caregivers ◽  
Emotional Support ◽  
Poor Prognosis ◽  
Care Delivery ◽  
Qualitative Interviews ◽  
Adolescents And Young Adults ◽  
Eol Care

Background: Adolescents and young adults (AYAs; aged 15–39 years) with cancer frequently receive intensive measures at the end of life (EoL), but the perspectives of AYAs and their family members on barriers to optimal EoL care are not well understood. Methods: We conducted qualitative interviews with 28 bereaved caregivers of AYAs with cancer who died in 2013 through 2016 after receiving treatment at 1 of 3 sites (University of Alabama at Birmingham, University of Iowa, or University of California San Diego). Interviews focused on ways that EoL care could have better met the needs of the AYAs. Content analysis was performed to identify relevant themes. Results: Most participating caregivers were White and female, and nearly half had graduated from college. A total of 46% of AYAs were insured by Medicaid or other public insurance; 61% used hospice, 46% used palliative care, and 43% died at home. Caregivers noted 3 main barriers to optimal EoL care: (1) delayed or absent communication about prognosis, which in turn delayed care focused on comfort and quality of life; (2) inadequate emotional support of AYAs and caregivers, many of whom experienced distress and difficulty accepting the poor prognosis; and (3) a lack of home care models that would allow concurrent life-prolonging and palliative therapies, and consequently suboptimal supported goals of AYAs to live as long and as well as possible. Delayed or absent prognosis communication created lingering regret among some family caregivers, who lost the opportunity to support, comfort, and hold meaningful conversations with their loved ones. Conclusions: Bereaved family caregivers of AYAs with cancer noted a need for timely prognostic communication, emotional support to enhance acceptance of a poor prognosis, and care delivery models that would support both life-prolonging and palliative goals of care. Work to address these challenges offers the potential to improve the quality of EoL care for young people with cancer.

scholarly journals Applying human-centered design to maximize acceptability, feasibility, and usability of mobile technology supervision in Kenya: a mixed methods pilot study protocol

2021 ◽  
Vol 2 (1) ◽  
Author(s):  
Noah S. Triplett ◽  
Sean Munson ◽  
Anne Mbwayo ◽  
Teresia Mutavi ◽  
Bryan J. Weiner ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Mobile Technology ◽  
Qualitative Interviews ◽  
Pilot Trial ◽  
Scale Up ◽  
Task Shifting ◽  
Self Report ◽  
Human Centered Design ◽  
Lay Counselors ◽  
Link Type

Abstract Background Although research continues to support task-shifting as an effective model of delivering evidence-based practices (EBPs), little scholarship has focused how to scale up and sustain task-shifting in low- and middle-income countries, including how to sustainably supervise lay counselors. Ongoing supervision is critical to ensure EBPs are delivered with fidelity; however, the resources and expertise required to provide ongoing supervision may limit the potential to scale up and sustain task shifting. Opportunities may exist to leverage mobile technology to replace or supplement in-person supervision in low-resource contexts, but contextual variables, such as network connectivity and lay counselor preferences surrounding mobile technology, must be examined and considered when designing and implementing mobile technology supervision. Methods This study builds from an existing randomized trial in Kenya, wherein teachers and community health volunteers have been trained to provide trauma-focused cognitive behavioral therapy as lay counselors. The study will use an iterative and mixed methods approach, with qualitative interviews and a Human-Centered Design (HCD) workshop informing a non-randomized pilot trial. Semi-structured interviews will be conducted with lay counselors and supervisors to understand how mobile technology is currently being used for supervision and determine the barriers and facilitators to mobile technology supervision. Data from these interviews will inform an HCD workshop, where lay counselors and supervisors “re-design” supervision to most effectively leverage mobile technology. Workshop participants will also participate in focus groups to gather perceptions on the use of HCD techniques. The final outcome of the workshop will be a set of refined workflows, which will be tested in a mixed method, nonrandomized pilot with newly trained lay counselors and existing supervisors. The pilot trial will evaluate the acceptability, feasibility, and usability of mobile technology supervision through self-report questionnaires as well as perceptions of effectiveness through qualitative interviews with a subset of lay counselors and all supervisors. Discussion This study will provide a launching point for future research on supervision and methods to engage stakeholders to design and tailor interventions and implementation supports to fit low-resourced contexts. Trial registration The parent trial from which this study builds was registered on ClinicalTrials.gov on August 9, 2017 (NCT03243396).

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