A systematic review of remotely delivered interventions to support wellbeing amongst caregivers of adults with acquired brain injuries
Nils Rickardsson A * , Daniel Jon Stopforth B and David Gillanders CA
B
C
Abstract
There is a need for improved access to evidence-based interventions supporting the wellbeing of caregivers of adults with acquired brain injury (ABI). Remotely delivered interventions could address this need. The present systematic review sought to collate studies evaluating remotely delivered interventions designed to improve the wellbeing of caregivers of adults with an ABI, to summarise findings and to comment on the quality of this research.
Systematic searches were conducted up until December 2023. Study characteristics, populations, interventions and outcomes were outlined, and papers were appraised on methodological quality. The review was pre-registered (PROSPERO: CRD42020189235).
Eleven studies meeting inclusion criteria were identified. Methodological quality was generally low to adequate. Most studies evaluated an intervention for caregivers of people with stroke, with a variety of types of interventions trialled. The majority of studies reported non-significant findings on wellbeing outcomes when compared to control conditions.
There is limited evidence supporting a remotely delivered intervention to improve wellbeing outcomes for ABI caregivers. Specific recommendations are provided, including the development of a core set of outcomes and replication of findings over time, which can improve research into the development and evaluation of remote interventions for this population.
Keywords: ABI, brain injury, caregiving, carer support, mHealth, remote delivery, stroke, telehealth.
References
Aldehaim AY, Alotaibi FF, Uphold CR, Dang S (2016) The impact of technology-based interventions on informal caregivers of stroke survivors: a systematic review. Telemedicine and E-Health 22(3), 223-231.
| Crossref | Google Scholar | PubMed |
Bakas T, Champion V, Perkins SM, Farran CJ, Williams LS (2006) Psychometric testing of the revised 15-item Bakas Caregiving Outcomes Scale. Nursing Research 55(5), 346-355.
| Crossref | Google Scholar | PubMed |
Bakas T, Farran CJ, Austin JK, Given BA, Johnson EA, Williams LS (2009) Stroke caregiver outcomes from the Telephone Assessment and Skill-Building Kit (TASK). Topics in Stroke Rehabilitation 16(2), 105-121.
| Crossref | Google Scholar | PubMed |
Bakas T, Austin JK, Habermann B, Jessup NM, McLennon SM, Mitchell PH, Morrison G, Yang Z, Stump TE, Weaver MT (2015) Telephone assessment and skill-building kit for stroke caregivers: a randomized controlled clinical trial. Stroke 46(12), 3478-3487.
| Crossref | Google Scholar | PubMed |
Beal EM, Pelser C, Coates P (2023) Lockdown life-experiences of partners of individuals with an acquired brain injury during the COVID-19 pandemic: a qualitative study. Brain Impairment 24, 260-273.
| Crossref | Google Scholar |
Bishop D, Miller I, Weiner D, Guilmette T, Mukand J, Feldmann E, Keitner G, Springate B (2014) Family Intervention: Telephone Tracking (FITT): a pilot stroke outcome study. Topics in Stroke Rehabilitation 21(Suppl 1), S63-S74.
| Crossref | Google Scholar | PubMed |
Boele FW, Rooney AG, Bulbeck H, Sherwood P (2019) Interventions to help support caregivers of people with a brain or spinal cord tumour. Cochrane Database of Systematic Reviews CD012582.
| Crossref | Google Scholar | PubMed |
Brown R, Pain K, Berwald C, Hirschi P, Delehanty R, Miller H (1999) Distance education and caregiver support groups: comparison of traditional and telephone groups. Journal of Head Trauma Rehabilitation 14(3), 257-268.
| Crossref | Google Scholar | PubMed |
Bulsara CE, Fynn N (2006) An exploratory study of GP awareness of carer emotional needs in Western Australia. BMC Family Practice 7, 33.
| Crossref | Google Scholar | PubMed |
Chen L, Xiao LD, Chamberlain D, Newman P (2021) Enablers and barriers in hospital‐to‐home transitional care for stroke survivors and caregivers: a systematic review. Journal of Clinical Nursing 30(19–20), 2786-2807.
| Crossref | Google Scholar | PubMed |
Chung ML, Lee SJ, Son YJ, Miller JL, King RB (2021) Depressive symptom trajectories in family caregivers of stroke survivors during first year of caregiving. Journal of Cardiovascular Nursing 36(3), 254-262.
| Crossref | Google Scholar | PubMed |
Cicerone KD, Langenbahn DM, Braden C, Malec JF, Kalmar K, Fraas M, Felicetti T, Laatsch L, Harley JP, Bergquist T, Azulay J, Cantor J, Ashman T (2011) Evidence-based cognitive rehabilitation: updated review of the literature from 2003 through 2008. Archives of Physical Medicine and Rehabilitation 92(4), 519-530.
| Crossref | Google Scholar | PubMed |
Corry M, Neenan K, Brabyn S, Sheaf G, Smith V (2019) Telephone interventions, delivered by healthcare professionals, for providing education and psychosocial support for informal caregivers of adults with diagnosed illnesses. Cochrane Database of Systematic Reviews 2019(5), CD012533.
| Crossref | Google Scholar | PubMed |
Cumming TB, Cadilhac DA, Rubin G, Crafti N, Pearce DC (2008) Psychological distress and social support in informal caregivers of stroke survivors. Brain Impairment 9(2), 152-160.
| Crossref | Google Scholar |
Denham AMJ, Wynne O, Baker AL, Spratt NJ, Loh M, Turner A, Magin P, Bonevski B (2022) The long-term unmet needs of informal carers of stroke survivors at home: a systematic review of qualitative and quantitative studies. Disability and Rehabilitation 44(1), 1-12.
| Crossref | Google Scholar | PubMed |
D’Ippolito M, Aloisi M, Azicnuda E, Silvestro D, Giustini M, Verni F, et al. (2018) Changes in caregivers lifestyle after severe acquired brain injury: a preliminary investigation. BioMed Research International 201, 2824081.
| Crossref | Google Scholar | PubMed |
Fernandez E, Salem D, Swift JK, Ramtahal N (2015) Meta-analysis of dropout from cognitive behavioral therapy: magnitude, timing, and moderators. Journal of Consulting and Clinical Psychology 83(6), 1108-1122.
| Crossref | Google Scholar | PubMed |
Gallagher S, Wetherell MA (2020) Risk of depression in family caregivers: unintended consequence of COVID-19. BJPsych Open 6(6), e119.
| Crossref | Google Scholar | PubMed |
Goudarzian M, Fallahi-Khoshknab M, Dalvandi A, Delbari A, Biglarian A (2018) Effect of telenursing on levels of depression and anxiety in caregivers of patients with stroke: a randomized clinical trial. Iranian Journal of Nursing and Midwifery Research 23(4), 248-252.
| Crossref | Google Scholar | PubMed |
Greenwood N, MacKenzie A, Cloud G, Wilson N (2010) Loss of autonomy, control and independence when caring: a qualitative study of informal carers of stroke survivors in the first three months after discharge. Disability and Rehabilitation 32(2), 125-133.
| Crossref | Google Scholar | PubMed |
Greenwood N, MacKenzie A, Harris R, Fenton W, Cloud G (2011) Perceptions of the role of general practice and practical support measures for carers of stroke survivors: a qualitative study. BMC Family Practice 12, 57.
| Crossref | Google Scholar | PubMed |
Hartke RJ, King RB (2003) Telephone group intervention for older stroke caregivers. Topics in Stroke Rehabilitation 9(4), 65-81.
| Crossref | Google Scholar | PubMed |
Ilse IB, Feys H, de Wit L, Putman K, de Weerdt W (2008) Stroke caregivers’ strain: prevalence and determinants in the first six months after stroke. Disability and Rehabilitation 30(7), 523-530.
| Crossref | Google Scholar | PubMed |
Jackson D, Turner-Stokes L, Murray J, Leese M, McPherson KM (2009) Acquired brain injury and dementia: a comparison of carer experiences. Brain Injury 23(5), 433-444.
| Crossref | Google Scholar | PubMed |
Lakens D (2013) Calculating and reporting effect sizes to facilitate cumulative science: a practical primer for t-tests and ANOVAs. Frontiers in Psychology 4, 863.
| Crossref | Google Scholar |
Landis JR, Koch GG (1977) The Measurement of Observer Agreement for Categorical Data. Biometrics 33(1), 159.
| Google Scholar | PubMed |
LeLaurin JH, Freytes IM, Findley KE, Schmitzberger MK, Eliazar-Macke ND, Orozco T, Uphold CR (2021) Feasibility and acceptability of a telephone and web-based stroke caregiver intervention: a pilot randomized controlled trial of the RESCUE intervention. Clinical Rehabilitation 35(2), 253-265.
| Crossref | Google Scholar |
Loh AZ, Tan JS, Zhang MW, Ho RC (2017) The global prevalence of anxiety and depressive symptoms among caregivers of stroke survivors. Journal of the American Medical Directors Association 18(2), 111-116.
| Crossref | Google Scholar | PubMed |
Lond BJ, Williamson IR (2018) “Stuck in a loop of fear”: a phenomenological exploration of carers’ experiences supporting a spouse with acquired brain injury. Disability and Rehabilitation 40(24), 2907-2915.
| Crossref | Google Scholar | PubMed |
Lou S, Carstensen K, Jørgensen CR, Nielsen CP (2017) Stroke patients’ and informal carers’ experiences with life after stroke: an overview of qualitative systematic reviews. Disability and Rehabilitation 39(3), 301-313.
| Crossref | Google Scholar | PubMed |
MacKenzie A, Greenwood N (2012) Positive experiences of caregiving in stroke: a systematic review. Disability and Rehabilitation 34(17), 1413-1422.
| Crossref | Google Scholar | PubMed |
Maher CG, Sherrington C, Herbert RD, Moseley AM, Elkins M (2003) Reliability of the PEDro scale for rating quality of randomized controlled trials. Physical Therapy 83(8), 713-721.
| Google Scholar | PubMed |
McLaughlin KA, Glang A, Beaver SV, Gau JM, Keen S (2013) Web-based training in family advocacy. Journal of Head Trauma Rehabilitation 28(5), 341-348.
| Crossref | Google Scholar | PubMed |
Milbury K, Weathers SP, Durrani S, Li Y, Whisenant M, Li J, Lim B, Weinberg JS, Kesler SR, Cohen L, Bruera E (2020) Online Couple-Based Meditation Intervention for Patients With Primary or Metastatic Brain Tumors and Their Partners: Results of a Pilot Randomized Controlled Trial. Journal of Pain and Symptom Management 59(6), 1260-1267.
| Crossref | Google Scholar | PubMed |
Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group (2009) Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Medicine 6(7), e1000097.
| Crossref | Google Scholar | PubMed |
Murray HM, Maslany GW, Jeffery B (2006) Assessment of family needs following acquired brain injury in Saskatchewan. Brain Injury 20(6), 575-585.
| Crossref | Google Scholar | PubMed |
NeuroBITE (2020) PEDro-P Scale. Available at https://neurorehab‐evidence.com/web/cms/content/home
Ownsworth T, Haslam C (2016) Impact of rehabilitation on self-concept following traumatic brain injury: an exploratory systematic review of intervention methodology and efficacy. Neuropsychological Rehabilitation 26(1), 1-35.
| Crossref | Google Scholar |
Pierce LL, Steiner V, Govoni A, Thompson TC, Friedemann ML (2007) Two sides to the caregiving story. Topics in Stroke Rehabilitation 14(2), 13-20.
| Crossref | Google Scholar | PubMed |
Pierce LL, Steiner VL, Khuder SA, Govoni AL, Horn LJ (2009) The effect of a web-based stroke intervention on carers’ well-being and survivors’ use of healthcare services. Disability and Rehabilitation 31(20), 1676-1684.
| Crossref | Google Scholar | PubMed |
Piil K, Juhler M, Jakobsen J, Jarden M (2016) Controlled rehabilitative and supportive care intervention trials in patients with high-grade gliomas and their caregivers: a systematic review. BMJ Supportive and Palliative Care 6(1), 27-34.
| Crossref | Google Scholar | PubMed |
Powell JM, Fraser R, Brockway JA, Temkin N, Bell KR (2016) A telehealth approach to caregiver self-management following traumatic brain injury: a randomized controlled trial. Journal of Head Trauma Rehabilitation 31(3), 180-190.
| Crossref | Google Scholar | PubMed |
Pucciarelli G, Vellone E, Savini S, Simeone S, Ausili D, Alvaro R, Lee CS, Lyons KS (2017) Roles of Changing Physical Function and Caregiver Burden on Quality of Life in Stroke: A Longitudinal Dyadic Analysis. Stroke 48(3), 733-739.
| Crossref | Google Scholar | PubMed |
Rietdijk R, Togher L, Power E (2012) Supporting family members of people with traumatic brain injury using telehealth: a systematic review. Journal of Rehabilitation Medicine 44(11), 913-921.
| Crossref | Google Scholar | PubMed |
Rietdijk R, Power E, Attard M, Togher L (2022) Acceptability of telehealth-delivered rehabilitation: experiences and perspectives of people with traumatic brain injury and their carers. Journal of Telemedicine and Telecare 28(2), 122-134.
| Crossref | Google Scholar | PubMed |
Sin J, Henderson C, Spain D, Cornelius V, Chen T, Gillard S (2018) eHealth interventions for family carers of people with long term illness: a promising approach? Clinical Psychology Review 60, 109-125.
| Crossref | Google Scholar | PubMed |
Smith GC, Egbert N, Dellman-Jenkins M, Nanna K, Palmieri PA (2012) Reducing depression in stroke survivors and their informal caregivers: a randomized clinical trial of a web-based intervention. Rehabilitation Psychology 57(3), 196-206.
| Crossref | Google Scholar | PubMed |
Smith L, Onwumere J, Craig T, McManus S, Bebbington P, Kuipers E (2014) Mental and physical illness in caregivers: results from an English national survey sample. British Journal of Psychiatry 205(3), 197-203.
| Crossref | Google Scholar | PubMed |
Sterckx W, Coolbrandt A, Dierckx de Casterlé B, Van den Heede K, Decruyenaere M, Borgenon S, Mees A, Clement P (2013) The impact of a high-grade glioma on everyday life: a systematic review from the patient’s and caregiver’s perspective. European Journal of Oncology Nursing 17(1), 107-117.
| Crossref | Google Scholar | PubMed |
Suntai Z, Laha-Walsh K, Albright DL (2021) Effectiveness of remote interventions in improving caregiver stress outcomes for caregivers of people with traumatic brain injury. Rehabilitation Psychology 66, 415-422.
| Crossref | Google Scholar | PubMed |
Tooth L, Bennett S, McCluskey A, Hoffmann T, McKenna K, Lovarini M (2005) Appraising the quality of randomized controlled trials: inter-rater reliability for the OTseeker evidence database. Journal of Evaluation in Clinical Practice 11(6), 547-555.
| Crossref | Google Scholar | PubMed |
Turner B, Fleming J, Parry J, Vromans M, Cornwell P, Gordon C, Ownsworth T (2010) Caregivers of adults with traumatic brain injury: the emotional impact of transition from hospital to home. Brain Impairment 11(3), 281-292.
| Crossref | Google Scholar |
Verhagen AP, de Vet HCW, de Bie RA, Kessels AGH, Boers M, Bouter LM, Knipschild PG (1998) The Delphi list: a criteria list for quality assessment of randomized clinical trials for conducting systematic reviews developed by Delphi consensus. Journal of Clinical Epidemiology 51(12), 1235-1241.
| Crossref | Google Scholar | PubMed |