Effectiveness of in-person tele-support management on perceived burden, health-promoting practices, and sense of coherence among caregivers of older adults with parkinson's disease

الملخص EN

The number of older adults with Parkinson’s disease (PD) in need for supportive care is on the rise all over the world and the Middle East region in specific.

While there are spending efforts to expand formal long-term care services to respond to this growing demand, informal care forms the backbone of this disorder.

Parkinson’s disease is a complex degenerative disorder that leads to cognitive decline and restricted physical abilities, which require eventually a constant care.

Caregiving responsibilities are frequently bestowed upon close family members who are often thrown into caring tasks without being prepared and mostly experience the challenges of informal caregiving in association with other life demands which all require a significant amount of energy, dedication, and time-commitment.

These responsibilities often become overwhelming and can lead to substantial burden with experience of mental stress and physical exhaustion related to the caring role, which may not be addressed appropriately or therapeutically.

The often rapidly deteriorating condition of this disease threatens health promoting activities and sense of coherence of PD family caregivers, as the duration of care is in most cases hardly foreseeable with a challenge of lacking information about the entitlements, benefits, and support services.

Related to our study, the tele-support service comprised both virtual communication, practice, and information with face-to-face or in-person meetings with peers of caregivers and the researchers (gerontological nurses and geriatricians).

Setting: Conducted in El-Hadara Orthopedic and Traumatology University Hospital, specifically neuropsychiatric outpatient clinic; affiliated to Alexandria University in Alexandria, Egypt.

Subjects: 39 primary and secondary PD informal caregivers recruited after fulfilling the inclusion criteria Tools: The following 4 measures were applied: (1) Demographic, caregiving experience, and support needs of caregivers of PD Older Adults Structured Interview Schedule, (2) Zarit Caregiver Burden Interview Arabic Abridged version (ZCBI-A 12 items- short version), (3) Health-promoting lifestyle Profile II – 52 items (HPLP-II scale), and (4) Antonovsky Sense of coherence scale13 items (SOC-13).

Results: Family caregivers scored significantly lower on all measures of health promotion and sense of coherence, and higher on burden which were the areas of significant improvement after the application of individualized-based one-to-one interview and telephone counseling combined with group-based videoconferencing in the intervention timeframes.

Age, level of education, duration and number of hours spent in caregiving, and caregivers’ category are significant predictor variables.

Conclusion: In-person tele-support intervention holds considerable promise in addressing efficiently and effectively caregiving challenges and stressors, resources available, and the health-promoting concerns of PD family caregivers where and when assistance is needed.

It also contributes to bridging the gap between technologies, and nursing and medical care as potential conflicting dimensions through significant improvement in target caregiver outcomes which is the end result of enhanced acquired knowledge, caregiving experience, shared decision making, actively involved in the care process, and practiced innovative skills obtained through participation.

Recommendations: Establishment of community-based and nationally funded Respite at Home care services to aid management of care recipients with PD is critically called for.

Furthermore, construction of a virtual support platform dedicated to young caregivers’ sector, initiation of online caregiver support web page, and accessible, affordable, tailor-made, and high-quality health-promoting and resource services for PD caregivers in the community are much needed measures.