Finding a new balance in life: a qualitative study on perceived long-term needs of people with acquired brain injury and partners

References

• Winstein CJ, Stein J, Arena R, Bates B, Cherney LR, Cramer SC, Deruyter F, Eng JJ, Fisher B, Harvey RL, et al. Guidelines for adult stroke rehabilitation and recovery: a guideline for healthcare professionals from the American heart association/American stroke association. Stroke. 2016;47:e98–e169.
   PubMed Web of Science ®Google Scholar
• Gordon W, Zafronte R, Cicerone K, Cantor J, Brown M, Lombard L, Goldsmith R, Chandna T. Traumatic brain injury rehabilitation: state of the science. Am J Phys Med Rehabil. 2006;85:343–82.doi:10.1097/01.phm.0000202106.01654.61.
   PubMed Web of Science ®Google Scholar
• Murray J, Ashworth R, Forster A, Young J. Developing a primary care-based stroke service: a review of the qualitative literature. Br J Gen Pract. 2003;53:137–42.
   PubMed Web of Science ®Google Scholar
• Murray J, Young J, Forster A, Ashworth R. Developing a primary care-based stroke model: the prevalence of longer-term problems experienced by patients and carers. Br J Gen Pract. 2003;53:803–07.
   PubMed Web of Science ®Google Scholar
• Brereton L, Nolan M. “You do know he’s had a stroke, don’t you?” Preparation for family care-giving-the neglected dimension. J Clin Nurs. 2000;9:498–506.doi:10.1046/j.1365-2702.2000.00396.x.
   PubMed Web of Science ®Google Scholar
• Jennekens N, Dierckx de Casterlé B, Dobbels F. A systematic review of care needs of people with traumatic brain injury (TBI) on a cognitive, emotional and behavioural level. J Clin Nurs. 2010;19:1198–206.doi:10.1111/j.1365-2702.2009.03114.x.
   PubMed Web of Science ®Google Scholar
• Murray J, Young J, Forster A. Review of longer-term problems after a disabling stroke. Rev Clin Gerontol. 2007;17:55–65.doi:10.1017/S0959259808002608.
   Google Scholar
• Whitnall L, McMillan TM, Murray GD, Teasdale GM. Disability in young people and adults after head injury: 5–7 year follow up of a prospective cohort study. [Internet]. J Neurol Neurosurg Psychiatry. 2006;77:640–45.doi:10.1136/jnnp.2005.078246.
   PubMed Web of Science ®Google Scholar
• Hare R, Rogers H, Lester H, McManus RJ, Mant J. What do stroke patients and their carers want from community services? Fam Pract. 2006;23:131–36.
   PubMed Web of Science ®Google Scholar
• Daniel K, Wolfe CDAA, Busch MA, Mckevitt C. What are the social consequences of stroke for working-aged adults?: a systematic review. Stroke. 2009;40:431–41.doi:10.1161/STROKEAHA.108.534487.
   PubMed Web of Science ®Google Scholar
• Stokman M, Verhoeff H, Heineke D. Navigeren naar Herstel. Hersenstichting Nederland. 2011.
   Google Scholar
• Camak DJ. Addressing the burden of stroke caregivers: a literature review. J Clin Nurs. 2015;24:2376–82.doi:10.1111/jocn.2015.24.issue-17pt18.
   PubMed Web of Science ®Google Scholar
• Dillahunt-Aspillaga C, Jorgensen-Smith T, Ehlke S, Sosinski M, Monroe D, Thor J: Traumatic Brain Injury. Unmet support needs of caregivers and families in Florida. PLoS One. 2013;8:1–9.
   Web of Science ®Google Scholar
• Beunder C, Dekker JHM, Brasser JA, Depla MFIA. Thuis na een CVA: ‘Dan Begint het Pas’. Een Kwalitatief Onderzoek naar de Behoefte aan Nazorg van CVA-patiënten na Terugkeer naar Huis. Tijdschr Gerontol Geriatr. 2015;46:196–203.doi:10.1007/s12439-015-0139-z.
   PubMedGoogle Scholar
• Rotondi AJ, Sinkule J, Balzer K, Harris J, Moldovan R. A qualitative needs assessment of persons who have experienced traumatic brain injury and their primary family caregivers. J Head Trauma Rehabil. 2007;22:14–25.doi:10.1097/00001199-200701000-00002.
   PubMed Web of Science ®Google Scholar
• Pickelsimer EE, Selassie AW, Sample PL, Heinemann AW, Gu JK, Veldheer LC. Unmet service needs of persons with traumatic brain injury. J Head Trauma Rehabil. 2007;22:1–13.doi:10.1097/00001199-200701000-00001.
   PubMed Web of Science ®Google Scholar
• Moreland JD, Depaul VG, Dehueck AL, Pagliuso S, Yip DWC, Pollock BJ, Wilkins S. Needs assessment of individuals with stroke after discharge from hospital stratified by acute functional independence measure score. Disabil Rehabil. 2009;31:2185–95.doi:10.3109/09638280902951846.
   PubMed Web of Science ®Google Scholar
• Lefebvre H, Levert MJ. The needs experienced by individuals and their loved ones following a traumatic brain injury. J Trauma Nurs. 2012;19:197–207.doi:10.1097/JTN.0b013e318275990d.
   PubMedGoogle Scholar
• Leith KH, Phillips L, Sample PL. Exploring the service needs and experiences of persons with TBI and their families: the South Carolina experience. Brain Inj. 2004;18:1191–208.doi:10.1080/02699050410001719943.
   PubMed Web of Science ®Google Scholar
• Pindus DM, Mullis R, Lim L, Wellwood I, Rundell AV, Aziz NAA, Mant J. Stroke survivors’ and informal caregivers’ experiences of primary care and community healthcare services – a systematic review and meta-ethnography. PLoS One. 2018;13:1–23.
   Web of Science ®Google Scholar
• Andelic N, Soberg HL, Berntsen S, Sigurdardottir S, Roe C. Self-perceived health care needs and delivery of health care services 5 years after moderate-to-severe traumatic brain injury. PM&R. 2014;6:1013–21.doi:10.1016/j.pmrj.2014.05.005.
   Web of Science ®Google Scholar
• Rothwell K, Boaden R, Bamford D, Tyrrell PJ. Feasibility of assessing the needs of stroke patients after six months using the GM-SAT. Clin Rehabil. 2012;27:264–71.doi:10.1177/0269215512457403.
   PubMed Web of Science ®Google Scholar
• Norrving B, Barrick J, Davalos A, Dichgans M, Cordonnier C, Guekht A, Kutluk K, Mikulik R, Wardlaw J, Richard E, et al. Action plan for stroke in Europe 2018–2030. Eur Stroke J. 2018;3:309–36.
   PubMed Web of Science ®Google Scholar
• Patton M. Qualitative research & evaluation methods. 3rd ed. Thousands Oaks London New Delhi: SAGE Publications; 2002.
   Google Scholar
• Hennink M. International focus group research. a handbook for the health and social sciences. Cambridge: University Press; 2007.
   Google Scholar
• Sleeswijk Visser F, Jan Stappers P, Van Der Lugt R, Sanders E. Contextmapping: experiences from Practice. Int J CoCreation Des Arts ISSN. 2007;1:119–49.
   Google Scholar
• Boots LMM, Wolfs CAG, Verhey FR, Kempen GIJM, de Vugt ME. Qualitative study on needs and wishes of early-stage dementia caregivers: the paradox between needing and accepting help. Int Psychogeriatrics. 2015;27:927–36.doi:10.1017/S1041610214002804.
   PubMed Web of Science ®Google Scholar
• Verhage F. Intelligentie en leeftijd: onderzoek bij Nederlanders van Twaalf tot Zevenenzeventig Jaar. [Intelligence and Age: investigations on Dutch persons from twelve to seventy-seven years]. Assen: Van Gorcum; 1964.
   Google Scholar
• Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15:1277–88.doi:10.1177/1049732305276687.
   PubMed Web of Science ®Google Scholar
• Elo S, Kyngäs H. The qualitative content analysis process. J Adv Nurs. 2008;62:107–15.doi:10.1111/j.1365-2648.2007.04569.x.
   PubMed Web of Science ®Google Scholar
• Smith JE, Smith DL, Map N. No guide: family caregivers’ perspectives on their journeys through the system. Care Manag J. 2000;2:27–33.
   PubMedGoogle Scholar
• Mueller C, Wang Y, Brooks A, Morant N, Sullivan P, Raymont V. ‘Attending to the wound and the person’–patients’ experiences and expectations of a newly established traumatic brain injury clinic. Brain Inj. 2017;31:1863–70.doi:10.1080/02699052.2017.1346290.
   PubMed Web of Science ®Google Scholar
• Gassaway J, Jones ML, Sweatman WM, Hong M, Anziano P, DeVault K. Effects of peer mentoring on self-efficacy and hospital readmission after inpatient rehabilitation of individuals with spinal cord injury: a randomized controlled trial. Arch Phys Med Rehabil. 2017;98:1526–34.doi:10.1016/j.apmr.2017.02.018.
   PubMed Web of Science ®Google Scholar
• Morris RPG, Fletcher-Smith JC, Radford KA. A systematic review of peer mentoring interventions for people with traumatic brain injury. Clin Rehabil. 2017;31:1030–38.doi:10.1177/0269215516676303.
   PubMed Web of Science ®Google Scholar
• Wobma R, Nijland R, Ket J, Kwakkel G. Evidence for peer support in rehabilitation for individuals with acquired brain injury: a systematic review. J Rehabil Med. 2016;48:837–40.doi:10.2340/16501977-2160.
   PubMed Web of Science ®Google Scholar
• Bellon M, Sando S, Crocker R, Farnden J, Duras M. Information, connection and giving back: peer support outcomes for families following acquired brain injury in South Australia. Heal Soc Care Community. 2017;25:204–14.doi:10.1111/hsc.12294.
   PubMed Web of Science ®Google Scholar
• Struchen MA, Davis LC, Bogaards JA, Hudler-Hull T, Clark AN, Mazzei DM, Sander AM, Caroselli JS. Making connections after brain injury: development and evaluation of a social peer-mentoring program for persons with traumatic brain injury. J Head Trauma Rehabil. 2011;26:4–19.doi:10.1097/HTR.0b013e3182048e98.
   PubMed Web of Science ®Google Scholar
• Turner B, Kennedy A, Kendall M, Muenchberger H. Supporting the growth of peer-professional workforces in healthcare settings: an evaluation of a targeted training approach for volunteer leaders of the STEPS program. Disabil Rehabil. 2014;36:1219–26.doi:10.3109/09638288.2013.845251.
   PubMed Web of Science ®Google Scholar
• Vincent C, Deaudelin I, Robichaud L, Rousseau J, Viscogliosi C, Talbot LR, Desrosiers J. Rehabilitation needs for older adults with stroke living at home: perceptions of four populations. BMC Geriatr. 2007. 7.
   PubMedGoogle Scholar
• Lannin NA, Laver K, Henry K, Turnbull M, Elder M, Campisi J, Schmidt J, Schneider E. Effects of case management after brain injury: a systematic review. NeuroRehabil. 2014;35:635–41.doi:10.3233/NRE-141161.
   PubMed Web of Science ®Google Scholar
• Boter H. Multicenter randomized controlled trial of an outreach nursing support program for recently discharged stroke patients. Stroke. 2004;35:2867–72.doi:10.1161/01.STR.0000147717.57531.e5.
   PubMed Web of Science ®Google Scholar
• Vroomen JMN, Bosmans JE, Eekhout I, Joling KJ, Van Mierlo LD, Meiland FJM, Van Hout HPJ, De Rooij SE. The cost-effectiveness of two forms of case management compared to a control group for persons with dementia and their informal caregivers from a societal perspective. PLoS One. 2016;11:1–20.
   Web of Science ®Google Scholar
• Reilly S, Malouf R, Hoe J, Toot S, Challis D, Orrell M. Case management approaches to home support for people with dementia. Cochrane Database Syst Rev. 2015;1.
   Web of Science ®Google Scholar
• Joo JY, Liu MF. Effectiveness of nurse-led case management in cancer care: systematic review. Clin Nurs Res. 2019;28:968–91.doi:10.1177/1054773818773285.
   PubMed Web of Science ®Google Scholar
• Norris SL, Nichols PJ, Caspersen CJ, Glasgow RE, Engelgau MM, Jack L, Isham G, Snyder SR, Carande-Kulis VG, Garfield S, et al. The effectiveness of disease and case management for people with diabetes: a systematic review. Am J Prev Med. 2002;22:15–38.
   PubMed Web of Science ®Google Scholar
• Joo JY, Huber DL. An integrative review of case management for diabetes. Prof Case Manag. 2012;17:72–85.doi:10.1097/NCM.0b013e318243d473.
   PubMedGoogle Scholar
• Tsuji T. Considerations for establishing community liaison for stroke: from a rehabilitation perspective. Jpn Med Assoc J. 2010;53:311–18.
   Google Scholar
• Langhorne P, Coupar F, Pollock A. Motor recovery after stroke: a systematic review. Lancet Neurol. 2009;8:741–54.doi:10.1016/S1474-4422(09)70150-4.
   PubMed Web of Science ®Google Scholar
• World Health Organisation. The international classification of functioning, disability and health. World Heal Organ. 2001;18:237.
   Google Scholar
• Meehan TJ, King RJ, Bea PH, Robinson JD. Recovery-based practice: do we know what we mean or mean what we know?. Aust N Z J Psychiatry. 2008;42:177–82.doi:10.1080/00048670701827234.
   PubMed Web of Science ®Google Scholar
• Pincus HA, Spaeth-rublee B, Sara G, Goldner EM, Prince PN. A review of mental health recovery programs in selected industrialized countries. Int J Ment Health Syst. 2016;73:1–9.
   Google Scholar
• Huber M, Knottnerus JA, Green L, van der Horst H, Jadad AR, Kromhout D, Leonard B, Lorig K, Loureiro MI, van der Meer JW, et al. How should we define health? Br Med J. 2011;343:1–3.
   Web of Science ®Google Scholar
• Dams-O’Connor K, Landau A, Hoffman J, St De Lore J. Patient perspectives on quality and access to healthcare after brain injury. Brain Inj. 2018;32:431–41.doi:10.1080/02699052.2018.1429024.
   PubMed Web of Science ®Google Scholar