Social networks of patients with multimorbidity: a qualitative study of patients’ and supporters’ views
Eileen McKinlay 1 , Janet McDonald 1 , Ben Darlow 1 , Meredith Perry 1
+ Author Affiliations
- Author Affiliations
1 University of Otago, Wellington, New Zealand
Correspondence to: Eileen McKinlay, Associate Professor, Department of Primary Health Care and General Practice, University of Otago, Wellington, New Zealand. Email: eileen.mckinlay@otago.ac.nz
Journal of Primary Health Care 9(2) 153-161 https://doi.org/10.1071/HC16062
Published: 17 May 2017
Journal Compilation © Royal New Zealand College of General Practitioners 2017.
This is an open access article licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Abstract
INTRODUCTION: Multimorbidity impacts on patients’ health and wellbeing, but relationships experienced within social networks can support people to live well.
AIM: This study sought to elicit the views of New Zealanders with multimorbidity about their social networks and the views of their nominated supporters.
METHODS: Ten patients with multimorbidity and their nominated supporters each independently recorded their views of the patient’s social network on a five-concentric-circle template, indicating supporting role and importance to each patient. Sets of patients’ and nominated supporters’ templates were compared followed by comparing matched pairs of patient–supporter templates. Nominated supporters’ views about the patients’ networks and why they were nominated were collated.
RESULTS: Three patients nominated family members as supporters and seven nominated health professionals. Nominated family members identified a greater range of supporters than nominated health professionals. Nominated family members perceived that they played an integral role, whereas health professionals were less comfortable viewing relationships with patients in this way. Family members were not surprised to be nominated as supporters, and some described a considerable burden of care. Health professionals described themselves as coordinators of support and having positive relationships with patients.
DISCUSSION: Patients with multimorbidity have rich and diverse social networks. They view partners, family and health professionals as providing significant support. Family members are more aware of their role and have a deeper understanding of other network members than health professionals. Further research is needed on the use of social networks in clinical practice to support the health and wellbeing of those with multimorbidity.
KEYWORDS: Health professionals; long-term conditions; multimorbidity; patients; social networks
References
[1] National Institute for Health and Care Excellence (NICE). Multimorbidity: clinical assessment and management. London: NICE; 2016.[2] Huber M, van Vliet M, Giezenberg M, et al. Towards a ‘patient-centred’ operationalisation of the new dynamic concept of health: a mixed methods study. BMJ Open. 2016; 6 e010091
| Towards a ‘patient-centred’ operationalisation of the new dynamic concept of health: a mixed methods study.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BC28rpvVSltA%3D%3D&md5=e5dbd02aa08f4064df327f4d1c156d61CAS |
[3] Afshar S, Roderick PJ, Kowal P, et al. Multimorbidity and the inequalities of global ageing: a cross-sectional study of 28 countries using the World Health Surveys. BMC Public Health. 2015; 15 776
| Multimorbidity and the inequalities of global ageing: a cross-sectional study of 28 countries using the World Health Surveys.Crossref | GoogleScholarGoogle Scholar |
[4] Van Hecke A, Heinen M, Fernández-Ortega P, et al. Systematic literature review on effectiveness of self-management support interventions in patients with chronic conditions and low socio-economic status. J Adv Nurs. 2017; 73 775–93.
[5] Greene J, Hibbard J. Why does patient activation matter? An examination of the relationships between patient activation and health-related outcome. J Gen Intern Med. 2012; 27 520–6.
| Why does patient activation matter? An examination of the relationships between patient activation and health-related outcome.Crossref | GoogleScholarGoogle Scholar |
[6] Flickinger TE, Saha S, Moore RD, Beach MC. Higher quality communication and relationships are associated with improved patient engagement in HIV care. J Acquir Immune Defic Syndr. 2013; 63 362–6.
| Higher quality communication and relationships are associated with improved patient engagement in HIV care.Crossref | GoogleScholarGoogle Scholar |
[7] Ward MC, Miller BF, Marconi VC, et al. The role of behavioral health in optimizing care for complex patients in the primary care setting. J Gen Intern Med. 2016; 31 265–7.
| The role of behavioral health in optimizing care for complex patients in the primary care setting.Crossref | GoogleScholarGoogle Scholar |
[8] Gonzalez JS, Tanenbaum ML, Commissariat PV. Psychosocial factors in medication adherence and diabetes self-management: implications for research and practice. Am Psychol. 2016; 71 539–51.
| Psychosocial factors in medication adherence and diabetes self-management: implications for research and practice.Crossref | GoogleScholarGoogle Scholar |
[9] Muth C, van den Akker M, Blom JW, et al. The Ariadne principles: how to handle multimorbidity in primary care consultations. BMC Med. 2014; 12 223
| The Ariadne principles: how to handle multimorbidity in primary care consultations.Crossref | GoogleScholarGoogle Scholar |
[10] Wallace E, Salisbury C, Guthrie B, et al. Managing patients with multimorbidity in primary care. BMJ. 2015; 350 h176
| Managing patients with multimorbidity in primary care.Crossref | GoogleScholarGoogle Scholar |
[11] Smith SM, Soubhi H, Fortin M, O’Dowd T. Interventions for improving outcomes in patients with multimorbidity in primary care and community settings: systematic review. Cochrane Database Syst Rev 2012; 4 CD006560
[12] Vassilev I, Rogers A, Blickem C, et al. Social networks, the ‘work’ and work force of chronic illness self-management: a survey analysis of personal communities. PLoS One. 2013; 8 e59723
| Social networks, the ‘work’ and work force of chronic illness self-management: a survey analysis of personal communities.Crossref | GoogleScholarGoogle Scholar | 1:CAS:528:DC%2BC3sXmtVeit7c%3D&md5=520d859c800ef764559e9592fd386bb1CAS |
[13] Morris RL, Kennedy A, Sanders C. Evolving ‘self’-management: exploring the role of social network typologies on individual long-term condition management. Health Expect. 2016; 19 1044–61.
| Evolving ‘self’-management: exploring the role of social network typologies on individual long-term condition management.Crossref | GoogleScholarGoogle Scholar |
[14] Rogers A, Vassilev I, Sanders C, et al. Social networks, work and network-based resources for the management of long-term conditions: a framework and study protocol for developing self-care support. Implement Sci. 2011; 6 56
| Social networks, work and network-based resources for the management of long-term conditions: a framework and study protocol for developing self-care support.Crossref | GoogleScholarGoogle Scholar |
[15] Crossley N. Small-world networks, complex systems and sociology. Sociology. 2008; 42 261–77.
| Small-world networks, complex systems and sociology.Crossref | GoogleScholarGoogle Scholar |
[16] Kennedy A, Rogers A, Vassilev I, et al. Dynamics and nature of support in the personal networks of people with type 2 diabetes living in Europe: qualitative analysis of network properties. Health Expect. 2015; 18 3172–85.
| Dynamics and nature of support in the personal networks of people with type 2 diabetes living in Europe: qualitative analysis of network properties.Crossref | GoogleScholarGoogle Scholar |
[17] Reeves D, Blickem C, Vassilev I, et al. The contribution of social networks to the health and self-management of patients with long-term conditions: a longitudinal study. PLoS One. 2014; 9 e98340
| The contribution of social networks to the health and self-management of patients with long-term conditions: a longitudinal study.Crossref | GoogleScholarGoogle Scholar |
[18] Vassilev I, Rogers A, Kennedy A, Koetsenruijter J. The influence of social networks on self-management support: a metasynthesis. BMC Public Health. 2014; 14 719
[19] Forbes H, Sutton M, Richardson G, Rogers A. The determinants of time spent on self-care. Chronic Illn. 2016; 12 98–115.
| The determinants of time spent on self-care.Crossref | GoogleScholarGoogle Scholar |
[20] Smith SM, Wallace E, O’Dowd T, Fortin M. Interventions for improving outcomes in patients with multimorbidity in primary care and community settings. Cochrane Database Syst Rev. 2016; CD006560
[21] Cottrell E, Yardley S. Lived experiences of multimorbidity: an interpretative meta-synthesis of patients’, general practitioners’ and trainees’ perceptions. Chronic Illn. 2015; 11 279–303.
| Lived experiences of multimorbidity: an interpretative meta-synthesis of patients’, general practitioners’ and trainees’ perceptions.Crossref | GoogleScholarGoogle Scholar |
[22] Rogers A, Vassilev I, Brooks H, et al. Brief encounters: what do primary care professionals contribute to peoples’ self-care support network for long-term conditions? A mixed methods study. BMC Fam Pract. 2016; 17 21
| Brief encounters: what do primary care professionals contribute to peoples’ self-care support network for long-term conditions? A mixed methods study.Crossref | GoogleScholarGoogle Scholar |
[23] Jaye C, Egan T. Communities of clinical practice: implications for health professional education. Focus Health Prof Educ. 2006; 8 1–10.
[24] Egan T, Jaye C. Communities of clinical practice: the social organization of clinical learning. Health. 2009; 13 107–25.
| Communities of clinical practice: the social organization of clinical learning.Crossref | GoogleScholarGoogle Scholar |
[25] Young J, Egan T, Williamson M, et al. An exercise to map patient-centred care networks. Clin Teach. 2016; 13 448–50.
| An exercise to map patient-centred care networks.Crossref | GoogleScholarGoogle Scholar |
[26] Young J, Jaye C, Egan T, et al. Communities of clinical practice in action: doing whatever it takes. Health. 2017; 1–19.
| Communities of clinical practice in action: doing whatever it takes.Crossref | GoogleScholarGoogle Scholar |
[27] Carryer J, Doolan-Noble F, Gauld R, Budge C. New Zealand patients’ perceptions of chronic care delivery. J Integr Care. 2014; 22 71–80.
| New Zealand patients’ perceptions of chronic care delivery.Crossref | GoogleScholarGoogle Scholar |
[28] Schoen C, Osborn R, Squires D, et al. New 2011 survey of patients with complex care needs in eleven countries finds that care is often poorly coordinated. Health Aff. 2011; 30 2437–48.
| New 2011 survey of patients with complex care needs in eleven countries finds that care is often poorly coordinated.Crossref | GoogleScholarGoogle Scholar |
[29] Kerse N, Teh R, Moyes SA, et al. Cohort profile: Te puawaitanga o Nga tapuwae Kia Ora tonu, life and living in advanced Age: a cohort study in New Zealand (LiLACS NZ). Int J Epidemiol. 2015; 44 1823–32.
| Cohort profile: Te puawaitanga o Nga tapuwae Kia Ora tonu, life and living in advanced Age: a cohort study in New Zealand (LiLACS NZ).Crossref | GoogleScholarGoogle Scholar |
[30] Ministry of Health. Tagata Pasifika in New Zealand 2016. [cited 2016 November 18]. Available from http://www.health.govt.nz/our-work/populations/pacific-health/tagata-pasifika-new-zealand
[31] Yon Y, Crimmins EM. Cohort morbidity hypothesis: health inequalities of older Maori and non-Maori in New Zealand. N Z Popul Rev. 2014; 40 63–83.
[32] Bower P, Macdonald W, Harkness E, et al. Multimorbidity, service organization and clinical decision making in primary care: a qualitative study. Fam Pract. 2011; 28 579–87.
| Multimorbidity, service organization and clinical decision making in primary care: a qualitative study.Crossref | GoogleScholarGoogle Scholar |
[33] Mangin D, Heath I, Jamoulle M. Beyond diagnosis: rising to the multimorbidity challenge. BMJ 2012; 344 e3526
[34] Darlow B, Donovan S, Coleman K, et al. What makes an interprofessional education programme meaningful to students? Findings from focus group interviews with students based in New Zealand. J Interprof Care. 2016; 30 355–61.
| What makes an interprofessional education programme meaningful to students? Findings from focus group interviews with students based in New Zealand.Crossref | GoogleScholarGoogle Scholar |
[35] Wenger-Trayner E, Wenger-Traynor B. Social learning: levels of participation. 2015. [cited 2016 October 14]. Available from http://wenger-trayner.com/project/levels-of-participation/
[36] Scott J. Social Network Analysis, 3rd edn. Singapore: Sage Publications Ltd; 2013.
[37] Dwarswaard J, Bakker E, van Staa A, Boeije HR. Self-management support from the perspective of patients with a chronic condition: a thematic synthesis of qualitative studies. Health Expect. 2016; 19 194–208.
| Self-management support from the perspective of patients with a chronic condition: a thematic synthesis of qualitative studies.Crossref | GoogleScholarGoogle Scholar |
[38] Deeken JF, Taylor KL, Mangan P, et al. Care for the caregivers: a review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. J Pain Symptom Manage. 2003; 26 922–53.
| Care for the caregivers: a review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers.Crossref | GoogleScholarGoogle Scholar |
[39] Kendall M, Carduff E, Lloyd A, et al. Different experiences and goals in different advanced diseases: comparing serial interviews with patients with cancer, organ failure, or frailty and their family and professional carers. J Pain Symptom Manage. 2015; 50 216–24.
| Different experiences and goals in different advanced diseases: comparing serial interviews with patients with cancer, organ failure, or frailty and their family and professional carers.Crossref | GoogleScholarGoogle Scholar |
[40] Duke NN, Azzahir A. Creating culturally relevant and responsive health care models. J Comm Engage Higher Educ. 2016; 8 53–65.
[41] Oetzel J, Simpson M, Berryman K, et al. Managing communication tensions and challenges during the end-of-life journey: perspectives of Maori kaumatua and their whanau. Health Commun. 2015; 30 350–60.
| Managing communication tensions and challenges during the end-of-life journey: perspectives of Maori kaumatua and their whanau.Crossref | GoogleScholarGoogle Scholar |
[42] Mays N. Reorienting the New Zealand health care system to meet the challenge of long-term conditions in a fiscally constrained environment. Paper prepared for New Zealand Treasury Long-term Fiscal External Panel, November 2012. London: Victoria University & London School of Hygiene and Tropical Medicine, University of London; 2013. Available from www.victoria.ac.nz/sacl/about/cpf/publications/pdfs/Nick-Mays-Revised-Conference-Paper-Jan-2013-website-version.pdf
[43] Rogers A, Brooks H, Vassilev I, et al. Why less may be more: a mixed methods study of the work and relatedness of ‘weak ties’ in supporting long-term condition self-management. Implement Sci. 2014; 9 19
| Why less may be more: a mixed methods study of the work and relatedness of ‘weak ties’ in supporting long-term condition self-management.Crossref | GoogleScholarGoogle Scholar |
[44] Soubhi H, Bayliss EA, Fortin M, et al. Learning and caring in communities of practice: using relationships and collective learning to improve primary care for patients with multimorbidity. Ann Fam Med. 2010; 8 170–7.
| Learning and caring in communities of practice: using relationships and collective learning to improve primary care for patients with multimorbidity.Crossref | GoogleScholarGoogle Scholar |
[45] May C. The hard work of being ill. Chronic Illn. 2006; 2 161–2.
| The hard work of being ill.Crossref | GoogleScholarGoogle Scholar |
[46] Sav A, Kendall E, McMillan SS, et al. ‘You say treatment, I say hard work’: treatment burden among people with chronic illness and their carers in Australia. Health Soc Care Community. 2013; 21 665–74.
[47] Jowsey T, McRae IS, Valderas JM, et al. Time’s up. Descriptive epidemiology of multi-morbidity and time spent on health related activity by older Australians: a time use survey. PLoS One. 2013; 8 e59379
| Time’s up. Descriptive epidemiology of multi-morbidity and time spent on health related activity by older Australians: a time use survey.Crossref | GoogleScholarGoogle Scholar | 1:CAS:528:DC%2BC3sXmtVemu7s%3D&md5=103f3840af0ed5e277e1d27aa4e65581CAS |
[48] Jowsey T. Time and chronic illness: a narrative review. Qual Life Res. 2016; 25 1093–102.
| Time and chronic illness: a narrative review.Crossref | GoogleScholarGoogle Scholar |
[49] Coventry PA, Fisher L, Kenning C, et al. Capacity, responsibility, and motivation: a critical qualitative evaluation of patient and practitioner views about barriers to self-management in people with multimorbidity. BMC Health Serv Res. 2014; 14 536
| Capacity, responsibility, and motivation: a critical qualitative evaluation of patient and practitioner views about barriers to self-management in people with multimorbidity.Crossref | GoogleScholarGoogle Scholar |
[50] Neuwelt P, Matheson D. New Zealand’s journey towards people-centred care. Int J Pers Cent Med. 2012; 2 73–9.
