Umbrella review of family-focused care interventions supporting families where a family member has a long-term condition

Joanna Smith, Parveen Ali, Yvonne Birks, Penny Curtis, Hannah Fairbrother, Susan Kirk, David Saltiel, Jill Thompson, Veronica Swallow, Joanna Smith, Parveen Ali, Yvonne Birks, Penny Curtis, Hannah Fairbrother, Susan Kirk, David Saltiel, Jill Thompson, Veronica Swallow

Abstract

Aim: The aim of this study was to summarize reviews of family-focused care interventions that support families with a family member with a long-term condition across the life course.

Design: Umbrella review.

Data sources: Medline (1946-2019), Cochrane Database of Systematic Reviews (2019), Database of Abstracts of Reviews of Effect and EMBASE (1947-2019), CINAHL (1981-2019), Health Technology Assessment Database (2019) and PsycInfo (1806-2019).

Review methods: All authors independently undertook title/abstract screening, data extraction and quality appraisal on a cluster of papers, working in groups of two or three to reach a consensus. The AMSTAR tool was used to appraise the quality of the studies and descriptive syntheses were undertaken.

Results: Fifteen reviews met the selection criteria. Overall family-focussed care and associated terms were poorly defined. Typically interventions were educational or psychological therapy/counselling with the goal of empowering individuals to manage their condition. There is some evidence that family-focused care interventions can improve clinical/biological health measures and self-care outcomes such as treatment adherence. Multicomponent psychosocial interventions that include cognitive-behavioural therapy, skills training, education and support and are focused on wider family members appear to improve family relationships and martial functioning.

Conclusion: Long-term conditions have an impact on individual and family health and well-being, yet the impact of family-focused care interventions on family outcomes was overall inconclusive. A better understanding of how family-focused care interventions improve the health and well-being of individuals and their families is needed to promote the inclusion of family-focused care into practice.

Impact: Supporting people with a long-term condition is a key health and social care priority. Family-focused care interventions have potential to improve the health and well-being of individuals and families, but there is a need to evaluate their clinical and cost-effectiveness. The findings from this review could be used by funding bodies when commissioning research for long-term conditions.

Keywords: family nursing; family-focused care; life course; long-term conditions; umbrella review.

© 2020 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.

References

    1. Al-Motlaq, M. A., Carter, B., Neil, S., Hallstrom, I. K., Foster, M., Coyne, I., … Shields, L. (2018). Toward developing consensus on family-centered care: An international descriptive study and discussion. Journal of Child Healthcare, 1-10,
    1. Årestedt, L., Benzein, E., & Persson, C. (2015). Families living with chronic illness: Beliefs about illness, family and health care. Journal of Family Nursing, 21(2), 206-231.
    1. Aromataris, E., Fernandez, R., Godfrey, C., Holly, C., Khalil, H., & Tungpunkom, P. (2017). Chapter 10: umbrella reviews. In E. Aromataris, & Z. Munn (Eds.), Joanna Briggs Institute Reviewer's Manual. The Joanna Briggs Institute. Retrieved from
    1. Ben-Shlomo, Y., & Kuh, D. (2002). A life course approach to chronic disease epidemiology: Conceptual models, empirical challenges and interdisciplinary perspectives. International Journal of Epidemiology, 31, 285-293.
    1. Berge, J. M., & Patterson, J. M. (2014). Cystic fibrosis and the family: A review and critique of the literature. Families, Systems & Health, 22(1), 74-100.
    1. Bernell, S., & Howard, S. W. (2016). Use your words carefully: What is a chronic disease? Frontiers in Public Health, 4, 1-3.
    1. Bishop, M., Stenhoff, D., & Shepard, L. (2007). Psychosocial adaptation and quality of life in multiple sclerosis: Assessment of the disability centrality model. Journal of Rehabilitation, 73(1), 3-12.
    1. Canter, K. S., Christofferson, J., Scialla, M. A., & Kazak, A. E. (2019). Technology-focused family interventions in pediatric chronic illness: A systematic review. Journal of Clinical Psychology in Medical Settings, 26(1), 68.
    1. Chesla, C. A. (2010). Do family interventions improve health? Journal of Family Nursing, 16(4), 355-377.
    1. Coleman, E. A., Roman, S. P., Hall, K. A., & Min, S. (2015). Enhancing the care transitions intervention protocol to better address the needs of family caregivers. Journal for Healthcare Quality, 37(1), 2-11.
    1. Cooper, J. M., Collier, J., James, V., & Hawkey, C. J. (2010). Beliefs about personal control and self-management in 30-40 year olds living with inflammatory bowel disease: A qualitative study. International Journal of Nursing Studies, 47, 1500-1509.
    1. Craig, P., Dieppe, P., Macintyre, S., Michie, S., Nazareth, I., & Petticrew, M. (2008). Developing and evaluating complex interventions: The new Medical Research Council guidance. The BMJ, 337,
    1. Daar, A. S., Singer, P. A., Leah Persad, D., Pramming, S. K., Matthews, D. R., Beaglehole, R., … Bell, J. (2007). Grand challenges in chronic non-communicable diseases. Nature, 450, 494-496.
    1. De Silva, M. J., Breuer, E., Lee, L., Asher, L., Chowdhary, N., Lund, C., & Patel, V. (2014). Theory of change: A theory-driven approach to enhance the Medical Research Council's framework for complex interventions. Trials, 15, 267.
    1. Deek, H., Hamilton, S., Brown, N., Inglis, S. C., Digiacomo, M., Newton, P. J., … Davidson, P. M. (2016). Family-centered approaches to healthcare interventions in chronic diseases in adults: A quantitative systematic review. Journal of Advanced Nursing, 72, 968-979.
    1. Department of Health (2012). Long-term conditions compendium of information. 3rd ed. London: Department of Health.
    1. Department of Health (2013). Annual report of the Chief Medical Officer, our children deserve better: Prevention pays, 2012. London: Department of Health.
    1. Elvish, R., Lever, S. J., Johnstone, J., Cawley, R., & Keady, J. (2013). Psychological interventions for carers of people with dementia: A systematic review of quantitative and qualitative evidence. Counselling & Psychotherapy Research, 13, 106-125.
    1. Eshleman, J. R., & Bulcroft, R. (2010). The family. 12th ed. Boston: Allyn & Bacon.
    1. Feeg, V., Paraszczuk, A. M., Cavusogulu, H., Shileds, L., & Al Mamum, A. (2015). How is family centered care perceived by healthcare providers from different countries? An International Comparison Study. Journal of Pediatric Nursing, 31(3), 267-276.
    1. Fortin, M., Soubhi, H., Hudon, C., Bayliss, E. A., & van den Akker, M. (2007). Multimorbidity's many challenges. British Medical Journal, 334, 1016-1017.
    1. Foster, K., Maybery, D., Reupert, A., Gladstone, B., Grant, A., Ruud, T., … Kowalenko, N. (2016a). Family-focused practice in mental health care: An integrative review. Child & Youth Services, 37(2), 129-155.
    1. Foster, M., Whitehead, L., & Maybee, P. (2016b). The parents', hospitalized child's and health care providers' perceptions and experiences of family-centered care within a pediatric critical care setting: A synthesis of quantitative research. Journal of Family Nursing, 22(1), 6-73.
    1. Foster, M., Whitehead, L., Maybee, P., & Cullens, V. (2013). The parents', hospitalized child's and health care providers' perceptions and experiences of family-centered care within a pediatric critical care setting: A metasynthesis of qualitative research. Journal of Family Nursing, 19(4), 431-4683.
    1. Gilliss, C. L., Pan, W., & Davis, L. L. (2019). Family involvement in adult chronic disease care: Reviewing the systematic reviews. Journal of Family Nursing, 25(1), 3-27.
    1. Global Burden of Disease (2016). Global, regional and national comparative risk assessment of 79 behavioural, environmental and occupational and metabolic risks or clusters of risks, 1990-2015: A systematic analysis for the Global Burden of Disease Study 2015. Lancet, 388(10053), 1659-1724.
    1. Golics, C. J., Basra, M. K. A., Salek, M. S., & Finlay, A. Y. (2013). The impact of patients' chronic disease on family quality of life: An experience from 26 specialties. International Journal of General Medicine, 6, 787-798.
    1. Goodman, R. A., Posner, S. F., Huang, E. S., Parekh, A. K., & Koh, H. K. (2013). Defining and measuring chronic conditions: Imperatives for research, policy, program and practice. Preventing Chronic Disease, 10, E66.
    1. Goodwin, N., Curry, N., Naylor, C., Ross, S., & Duldig, W. (2010). Managing people with long-term conditions. London: The King's Fund.
    1. Grant, M., & Booth, A. J. (2009). A typology of reviews: An analysis of 14 review typologies and associated methodologies. Health Information and Libraries Journal, 26, 91-108.
    1. Grey, M., Knafl, K., & McCorkle, R. (2006). A framework for the study of self- and family management of chronic conditions. Nursing Outlook, 54, 278-286.
    1. Hale, E. D., Treharne, G. J., & Kitas, G. D. (2007). The common sense model of self regulation of health and illness: How can we use it to understand and respond to patients' needs? Rheumatology, 46(6), 904-906.
    1. Harper, F. W. K., Eggly, S., Crider, B., Kobayashi, H., Kathleen, R. N., Meert, L., … Albrecht, T. L. (2015). Patient- and family-centered care as an approach to reducing disparities in asthma outcomes in urban African American children: A review of the literature. Journal of the National Medical Association, 107, 4-17.
    1. Harris, J., Croot, L., Thompson, J., & Springett, J. (2015). How stakeholder participation can contribute to systematic reviews of complex interventions. Journal of Epidemiology Community Health, 70(2), 207-214.
    1. Hartmann, M., Bazner, E., Wild, B., Eisler, I., & Herzog, W. (2010). Effects of interventions involving the family in the treatment of adult patients with chronic diseases: A meta-analysis. Psychotherapy and Psychosomatics, 79, 136-148.
    1. Hawton, A., Green, C., Dickens, A. P., Richards, S. H., Taylor, R. S., Edwards, R., … Campbell, J. L. (2011). The impact of social isolation on the health status and health-related quality of life of older people. Quality of Life Research, 20(1), 57-67.
    1. Jacob, C. M., Baird, J., Barker, M., Cooper, C., & Hanson, M. (2017). The importance of a life-course approach to health: Chronic disease risk from preconception through adolescence and adulthood, white paper. Geneva: World Health Organisation.
    1. Jonkman, N. H., Scuumans, M. J., Jaarsma, T., Shortridge-Baggett, L. M., Hoes, A. W., & Trappenburg, J. C. (2016). Self-management interventions: Proposal and validation of a new operational definition. Journal of Clinical Epidemiology, 80, 34-42.
    1. Justo, L. P., Soares, B. G. O., & Calil, H. M. (2007). Family interventions for bipolar disorder. Cochrane Database of Systematic Reviews, 4, CD005167.
    1. Kim, S. K., & Park, M. (2017). Effectiveness of person-centered care on people with dementia: A systematic review and meta-analysis. Clinical Interventions in Aging, 12, 381-397.
    1. Knafl, K. A. (2015). Family synthesis research: Possibilities and challenges. Journal of Family Nursing, 21(1), 3-10.
    1. Knafl, K. A., Deatrick, J. A., & Havill, N. L. (2012). Continued development of the family management style framework. Journal of Family Nursing, 18(1), 11-34.
    1. Knowles, S., Combs, R., Kirk, S., Griffiths, M., Patel, N., & Sanders, C. (2016). Hidden caring, hidden carers? Exploring the experience of carers for people with long-term conditions. Health & Social Care in the Community, 24(2), 203-213.
    1. Kuhlthau, K. A., Bloom, S., Van Cleave, J., Knapp, A. A., Romm, D., Klatka, K., … Perrin, J. M. (2011). Evidence for family-centered care for children with special health care needs: A systematic review. Academic Pediatrics, 11, 136-143.
    1. Kvaal, K., Halding, A., & Kvigne, K. (2014). Social provision and loneliness among older people suffering from chronic physical illness: A mixed-methods approach. Scandinavian Journal of Caring Sciences, 28(1), 104-111.
    1. Manning, J. C., Hemingway, P., & Redsell, S. A. (2013). Long-term psychosocial impact reported by childhood critical illness survivors: A systematic review. Nursing in Critical Care, 145-156,
    1. Martire, L. (2005). The “relative” efficacy of involving family in psychosocial interventions for chronic illness: Are there added benefits to patients and family members? Families, Systems & Health, 23, 312-328.
    1. Martire, L., Lustig, A. P., Schulz, R., Miller, G. E., & Helgeson, V. S. (2004). It is beneficial to involve a family member? A meta-analysis of psychosocial interventions for chronic illness. Health Psychology, 23, 599-611.
    1. Martire, L. M., Schulz, R., Helgeson, V. S., Small, J. S., & Saghafi, E. M. (2010). Review and meta-analysis of couple-oriented interventions for chronic illness. Annals of Behavioral Medicine, 40(3), 325-342.
    1. Martz, E., & Livneh, H. P. (2016). Psychosocial adaptation to disability within the context of positive psychology: Findings from the literature. Journal of Occupational Rehabilitation, 26, 4-12.
    1. McBroom, L. A., & Enriquez, M. (2009). Review of family-centered interventions to enhance the health outcomes of children with type 1 diabetes. Diabetes Educator, 35, 428-438.
    1. Östergaard, B., & Wagner, L. (2014). The development of family nursing in Denmark: current status and future perspectives. Journal of Family Nursing, 20(4), 487-500.
    1. Östlund, U., & Persson, C. (2014). Examining family responses to family systems nursing interventions: An integrative review. Journal of Family Nursing, 20(3), 259-286.
    1. Petticrew, M. (2011). When are complex interventions ‘complex’? When are simple interventions ‘simple’? European Journal of Public Health, 21, 4, 1, 397-398.
    1. Prazeres, F., & Santiagol, L. (2016). Relationship between health-related quality of life, perceived family support and unmet health needs in adult patients with multimorbidity attending primary care in Portugal: a multicentre cross-sectional study. Health and Quality of Life Outcomes, 14(156). .
    1. Reupert, A., Ward, B., McCormick, F., Ward, C., Waller, S., & Kidd, S. (2018). Developing a model of family focused practice with consumers, families, practitioners and managers: A community based participatory research approach. BMC Health Service Research, 18, 66.
    1. Roddis, J. K., Holloway, I., Bond, C., & Galvin, K. T. (2016). Living with a long-term condition: Understanding well-being for individuals with thrombophilia or asthma. International Journal of Qualitative Studies on Health and Well-Being, 11, 31530.
    1. Roth, D. L., Perkins, M., Wadley, V. G., Temple, E. M., & Haley, W. E. (2009). Family caregiving and emotional strain: Associations with quality of life in a large national sample of middle-aged and older adults. Quality of Life Research, 18(6), 679-688.
    1. Ryan, P., & Sawin, K. J. (2009). The individual and family self- management theory: Background and perspectives on context, process and outcomes. Nursing Outlook, 57(4), 217-225.
    1. Salisbury, C., Johnson, L., Purdy, S., Valderas, J. M., & Montgomery, A. A. (2011). Epidemiology and impact of multimorbidity in primary care: A retrospective cohort study. The British Journal of General Practice, 61(582), e12-e21.
    1. Salyer, J., Schubert, C. M., & Chiaranai, C. (2012). Supportive relationships, self-care confidence and heart failure self-care. Journal of Cardiovascular Nursing, 27(5), 384-393.
    1. Sanderson, T., Morris, M., Calnan, M., Richards, P., & Hewlett, S. (2010). It's this whole picture, this well-being’: Patients' understanding of ‘feeling well’ with rheumatoid arthritis. Chronic Illness, 6, 228-240.
    1. Shahriari, M., Ahmadi, M., Babaee, S., Mehrabi, T., & Sadeghi, M. (2013). Effects of a family support program on self-care behaviors in patients with congestive heart failure. Iranian Journal of Nursing and Midwifery Research, 18(2), 152-157.
    1. Shea, B. J., Grimshaw, J. M., Wells, G. A., Boers, M., Andersson, N., Hamel, C., … Bouter, L. M. (2007). Development of AMSTAR: A measurement tool to assess the methodological quality of systematic reviews. BMC Medical Research Methodology, 15(4), 7-10.
    1. Shields, L., Zhou, H., Pratt, J., Taylor, M., Hunter, J., & Pascoe, E. (2012). Family-centered care for hospitalised children aged 0-12 years. Cochrane Database of Systematic Reviews, 10, CD004811.
    1. Smith, J., Cheater, F., & Bekker, H. (2015). Parents' experiences of living with a child with a long-term condition: A rapid structured review of the literature. Health Expectations, 4, 452-474.
    1. Stacey, A. F., Gill, T. K., Price, K., & Taylor, W. (2018). Differences in risk factors and chronic conditions between informal (family) carers and non-carers using a population-based cross-sectional survey in South Australia. British Medical Journal Open, 8,
    1. Thistlethwaite, P. (2011). Integrating health and social care in Torbay: Improving care for Mrs Smith. London: The King's Fund.
    1. Torenholt, R., Schwennesen, N., & Willaing, I. (2014). Lost in translation - The role of family in interventions among adults with diabetes: A systematic review. Diabetic Medicine, 31, 15-23.
    1. Tritter, J. Q., & Calnan, M. (2002). Cancer as a chronic illness? Reconsidering categorization and exploring experience. European Journal of Cancer Care, 11, 161-165.
    1. Urban, A. D., Beery, D., & Grey, M. (2004). Optimizing outcomes in adolescents with type 1 diabetes and their families. Journal of Clinical Outcomes Management, 11(11), 299-306.
    1. Vaingankar, J. A., Subramaniam, M., Abdin, E., He, V. Y., & Chong, S. A. (2012). “How much can I take?”: Predictors of perceived burden for relatives of people with chronic illness. Annals of the Academy of Medicine, Singapore, 41(5), 212-220.
    1. van der Lee, J. H., Mokkink, L. B., Grootenhuis, M. A., Offringa, M., & Heymans, H. S. (2007). Definitions and measurements of chronic health conditions in childhood. JAMA, 297(24), 2741-2751.
    1. Van Horn, E., Fleury, J., & Moore, S. (2002). Family interventions during the trajectory of recovery from cardiac event: An integrative literature review. Heart & Lung, 31(3), 186-198.
    1. Walker, L. O., & Avant, K. C. (2011). Strategies for Theory Construction in Nursing, 5th ed. Boston, MA: Prentice Hall.
    1. Wallace, E., Salisbury, C., Guthrie, B., Lewis, C., Fahey, T., & Smith, S. M. (2015). Managing patients with multimorbidity 26 specialties in primary care. British Medical Journal, 350, h176.
    1. Watts, R., Zhou, H., Shields, L., Taylor, M., Munns, A., & Ngune, I. (2014). Family-centered care for hospitalized children aged 0-12 years: A systematic review of qualitative studies. JBI Database of Systematic Reviews & Implementation Reports, 12(7), 204-283. .
    1. Woods, B., Spector, A. E., Jones, C. A., Orrell, M., & Davies, S. P. (2005). Reminiscence therapy for dementia. Cochrane Database of Systematic Reviews, 2, CD001120. .
    1. World Health Organization (2017). Non-communicable diseases: Progress monitor 2017. Geneva: World Health Organisation.
    1. Yesufu-Udechuku, A., Harrison, B., Mayo-Wilson, E., Young, N., Woodhams, P., Shiers, D., … Kendall, T. (2015). Interventions to improve the experience of caring for people with severe mental illness: Systematic review and meta-analysis. British Journal of Psychiatry, 206(4), 268-274.

Source: PubMed

3
订阅