Resourcefulness Intervention Efficacy for Parent Caregivers of Technology-Dependent Children: A Randomized Trial

Parent caregivers of children who require lifesaving technology (e.g., mechanical ventilation, feeding tubes) must maintain a high level of vigilance 24/7. A two-arm randomized controlled trial tested the efficacy of a resourcefulness intervention on parents’ mental/physical health and family functioning at four time points over six months. Participants ( n = 93) cared for their technology-dependent children <18 years at home. The intervention arm received teaching on social (help-seeking), personal (self-help) resourcefulness skills; access to the intervention video and skill application video-vignettes; four weeks of skills reinforcement using daily logs; four weekly phone contacts; and booster sessions at two- and four-month postenrollment. The attention control arm received phone contact at identical time points plus the current standard of care. Statistically significant improvement was noted; fewer depressive cognitions and improved physical health for the intervention participants than attention control participants over time after controlling for covariates. The findings support the resourcefulness intervention efficacy.

Caring Again: Parent Caregivers for Their Wounded Adult Children Veterans

With military personnel in Iraq and Afghanistan surviving what were previously fatal injuries, there is ongoing discussion about how to provide care for them and support their families. Parents frequently provide care for their unmarried, injured adult children, especially those returning with polytraumatic injuries, PTSD, or Traumatic Brain Injury (TBI). Parents (n=160) of combat injured adult children who participated in a DoD-funded behavioral intervention study are described. Parents were mainly mothers, average age 60.2 years, with ages ranging from 45 to 79. The veterans had functional limitations, and only 9.2% were employed. Parents, on average, had been caregivers for 6.6 years and daily spent 7.7 hours providing care and 17.2 hours on duty, primarily focused on supervision and daily life management rather than physical care. Average caregiver burden score approached high and was related to veteran TBI diagnosis, aggressive behavior toward others, and functional limitations. Few parents (22.7%) worked full-time; 85.3% had decreased personal spending, 84.0% dipped into personal savings, and 58.9% reduced retirement saving. These findings are similar to those of aging parent caregivers of adult children with serious mental illness or developmental disabilities in amount of care provided to their adult children, their level of burden, financial and career cost to themselves, and concern about their future and their children’s future. As these parents and their adult children age, providing care and resources will present greater challenges for them, for the military and veteran care systems they rely on for support, and for society.

Parent/Caregiver Narratives of Challenges Related to Raising Transgender and/or Nonbinary Youth

Parents/caregivers of transgender and/or nonbinary (TNB) youth (those who identify with a different gender than the gender typically associated with their assigned sex) may experience secondary stigma related to their child’s TNB identity. However, parent/caregiver support is critical for TNB youth’s mental health. This study explored attitudes and challenges faced by parents/caregivers of TNB youth. Data were from 27 parents/caregivers of TNB youth who completed an anonymous online survey with qualitative and quantitative measures. Qualitative data were analyzed using immersion/crystallization and thematic analysis approaches. Six themes were developed from the data: TNB youth individual characteristics/experiences, societal and other external factors affecting parent/caregivers’ future outlook, TNB identity development and transition, TNB-related social and institutional interactions, parent/caregivers’ supportive cognitions and behaviors, and parent/caregivers’ challenging cognitions. Findings from this study can inform efforts to support parents/caregivers of TNB youth, which can ultimately support the well-being of TNB youth themselves.

Protocol for developing a healthcare transition intervention for young people with spinal cord injuries using a participatory action research approach

IntroductionWhile healthcare transition (HCT) interventions are recognised as an important area in paediatric rehabilitation, there has been limited research focusing on young people with spinal cord injuries (SCI). In this study, researchers will collaborate with young people with SCI and their parents/caregivers to develop, implement and evaluate the feasibility and acceptability of a HCT intervention aimed at supporting young people with SCI during their transition from paediatric to adult healthcare services.Methods and analysisA participatory action research (PAR) approach will be used to co-develop the HCT intervention with young people with SCI aged 14–25 years and their parents/caregivers. Three phases will be conducted to address the five objectives of this study. Phase 1 will use semi-structured interviews to explore young people and parent/caregivers’ experiences of HCT. In Phase 2a, both young people and parent/caregivers will be co-researchers. They will be included in the analysis of the interviews and will be asked to participate in co-design workshops to inform the development of a prototype HCT intervention. In Phase 2b, using focus groups, feedback on the prototype HCT intervention will be collected. In Phase 3, the refined prototype HCT intervention will be implemented, and young people with SCI and parent/caregivers will evaluate the feasibility and acceptability of the HCT intervention in semi-structured interviews. A reference group, including stakeholders and end users, will be consulted at different time points.Ethics and disseminationThe study has received ethics approval from Western Sydney University Human Research and Ethics Committee (H14029). The researcher will use the results of this study as chapters in a thesis to obtain a Doctor of Philosophy degree. The findings will be disseminated via publication in peer-reviewed journals and will be presented at local, national or international conferences.Trial registration numberACTRN12621000500853

A lifespan approach to understanding family caregiver experiences of a blood cancer diagnosis

Objectives The study examined the diagnosis experience of midlife family caregivers of a patient with a blood cancer, exploring similarities and differences between parent caregivers and adult-child caregivers. Methods Participants were between 30 and 65 years old and were family caregivers of a living patient with acute myeloid leukemia, acute lymphoblastic leukemia, or lymphoma. We conducted semi-structured interviews with parent caregivers (n = 20) and adult-child caregivers (n = 19) and a thematic analysis of the interview data. Results Both types of caregivers report the patient experiencing (1) mis- and missed diagnosis (facing delayed diagnosis or treatment and having symptoms dismissed or overlooked) and (2) emotional distress (being in shock and survival mode, struggling with uncertainty, and confronting mortality). Adult-child caregivers also experienced relational shifts in assuming control of their parent's care, sometimes despite geographic distance, and struggled to distribute the care burden among family members. Significance of results Differences between the caregivers’ experiences emerged based on the relational role and the patient's place in the lifespan. Findings can be used to inform the development of support resources to address the needs of each group.

‘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

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.

An Integrative Review Exploring Psycho-Social Impacts and Therapeutic Interventions for Parent Caregivers of Young People Living with Duchenne’s Muscular Dystrophy

The purpose of this integrative review was to explore psycho-social impacts and therapeutic interventions for parent caregivers of young people living with Duchenne’s Muscular Dystrophy (DMD). Electronic databases were searched for research publications between 2010 and 2020. This included Medline, CINAHL, PsycINFO, ERIC, ERC, and AMED. Four central themes emerged: Living with DMD; Knowing and telling; Transitioning; and Building resilience. The impact on parents caring for a child with DMD affected all aspects of their lives, changed over time, and had identifiable peak stress points. Unmet parental information and support needs left parents struggling in their role. Transition required changes to parenting behaviors and required adaptation and resilience. It is proposed that future investment should focus on anticipating family need, targeting intervention cognizant of predictable stress points and building resilience through social community. Parents may then be better positioned to support their child in looking forward.

The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review

Background: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers’ needs. Aim: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs. Design: A scoping review Data sources: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF). Results: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs. Conclusion: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.