Peer support for parents of children with chronic disabling conditions: A systematic review of quantitative and qualitative studies
Open accessAbstract
AIM: To review the qualitative and quantitative evidence of the benefits of peer support for parents of children with disabling conditions in the context of health, well-being, impact on family, and economic and service implications. METHOD: We comprehensively searched multiple databases. Eligible studies evaluated parent-to-parent support and reported on the psychological health and experience of giving or receiving support. There were no limits on the child's condition, study design, language, date, or setting. We sought to aggregate quantitative data; findings of qualitative studies were combined using thematic analysis. Qualitative and quantitative data were brought together in a narrative synthesis. RESULTS: Seventeen papers were included: nine qualitative studies, seven quantitative studies, and one mixed-methods evaluation. Four themes were identified from qualitative studies: (1) shared social identity, (2) learning from the experiences of others, (3) personal growth, and (4) supporting others. Some quantitative studies reported a positive effect of peer support on psychological health and other outcomes; however, this was not consistently confirmed. It was not possible to aggregate data across studies. No costing data were identified. CONCLUSION: Qualitative studies strongly suggest that parents perceive benefit from peer support programmes, an effect seen across different types of support and conditions. However, quantitative studies provide inconsistent evidence of positive effects. Further research should explore whether this dissonance is substantive or an artefact of how outcomes have been measured.
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Our findings are similar to those in the literature whereby systematic reviews of parent interventions in chronic disease find consistently strong positive qualitative findings but inconsistent results on parent reported quantitative outcomes.
“Our findings are similar to those in the literature whereby systematic reviews of parent interventions in chronic disease find consistently strong positive qualitative findings but inconsistent results on parent reported quantitative outcomes [60].”
From Online Acceptance and Commitment Therapy and Nutrition Workshop for Parents of Children with Inflammatory Bowel Disease: Feasibility, Acceptability, and Initial Effectiveness. (2021) · cites this paper as [60]
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Experimental — accuracy not yet measuredParents valued feeling connected to others with similar life experiences.
“Mirroring findings in face-face group programs for parents [70], parents valued feeling connected to others with similar life experiences.”
From Providing psychological support to parents of childhood cancer survivors: ‘cascade’ intervention trial results and lessons for the future (2021) · cites this paper as [70]
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“In addition, the literature on parental peer support is small (Shilling et al., 2013).”
BackgroundNelson, M. B., Riley, K., & Arellano, K. (2018) · Journal of Pediatric Oncology Nursing · doi:10.1177/1043454218762797 · Cited by 28 · see citing works
Dew, A., Collings, S., Dowse, L., Meltzer, A., & Smith, L. (2019) · Journal of Intellectual Disabilities · doi:10.1177/1744629519843012 · Cited by 27 · see citing works
“Life stressors such as interpersonal violence, destruction of property and severe sleep deprivation can result in high levels of depression, stress, poorer health outcomes, social isolation, marital dissatisfaction and lower quality of life for family members of a person who experiences challenging behaviours (Biswas…”
BackgroundMethodInfluentialPsychosocial Burden of Childhood Sickle Cell Disease on Caregivers in Kenya
Kuerten, B. G., Brotkin, S. M., Bonner, M. J., Ayuku, D., Njuguna, F. M., Taylor, S. M., & Puffer, E. S. (2020) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsaa021 · Cited by 29 · see citing works
“You Are Not Alone”: Advice Giving for Parents of Children Living with Complex Chronic Conditions
Rafferty, K. A., & Beck, G. A. (2019) · Health Communication · doi:10.1080/10410236.2019.1636341 · Cited by 27 · see citing works
“In fact, peer support for parents creates a shared social identity, fosters learning from others ’ experiences, enables personal growth, and develops helpful supportive communities (Shilling et al., 2013).”
BackgroundInfluentialDodds, R. L., & Walch, T. J. (2022) · Child Care Health and Development · doi:10.1111/cch.12986 · Cited by 26 · see citing works
“…identity, learning from the experiences of others, personal growth and supporting others, and further found that although quantitative results have been inconsistent, qualitative studies overwhelmingly report that parents perceive benefits from peer support programmes (Shilling et al., 2013).”
BackgroundResultBurke, M. M., Waitz‐Kudla, S. N., Rabideau, C., Taylor, J. L., & Hodapp, R. M. (2018) · Autism · doi:10.1177/1362361317753016 · Cited by 26 · see citing works
“Previous studies have documented the positive effects of peer support on parents’ well-being (e.g. Shilling et al., 2013; Solomon et al., 2001).”
Grennan, L., Nicula, M., Pellegrini, D., Giuliani, K., Crews, E., Webb, C., Gouveia, M., Loewen, T., & Couturier, J. L. (2022) · Journal of Eating Disorders · doi:10.1186/s40337-022-00719-2 · Cited by 25 · see citing works
“Qualitative analyses in a systematic review of one-to-one and group peer support for parents of children with chronic, disabling health conditions identified four themes related to the benefits of: belonging and support from meeting with others with similar lived experiences, learning from other parents’ expertise and…”
Background“Be Prepared to Fight Like Hell”: Parent Advice for IEP Meetings
Sanderson, K. A. (2023) · Exceptionality · doi:10.1080/09362835.2023.2184819 · Cited by 25 · see citing works
McCrossin, J., & Lach, L. (2023) · Child: Care, Health and Development · doi:10.1111/cch.13069 · Cited by 25 · see citing works
Smythe, T., de Matos, M. M., Fontes-Reis, J., Duttine, A., Ferrite, S., & Kuper, H. (2020) · PLoS ONE · doi:10.1371/journal.pone.0238850 · Cited by 24 · see citing works
“Our findings contribute to the growing body of evidence of the importance of participatory peer learning to improve child care and support caregivers’ psychological and emotional wellbeing [29, 26].”
BackgroundWalker, C. F., & Peterson, C. L. (2020) · Qualitative Health Research · doi:10.1177/1049732320964173 · Cited by 25 · see citing works
“A number report the need for better outcome measures (Shilling et al., 2013), or a need to focus on what peer support does best (Barker & Maguire, 2017).”
BackgroundAll together: Integrated care for youth with type 1 diabetes
Versloot, J., Ali, A. F., Minotti, S. C., Ma, J., Sandercock, J., Marcinow, M. L., Lok, D., Sur, D., de Wit, M., Mansfield, E. D., et al. (2021) · Pediatric Diabetes · doi:10.1111/pedi.13242 · Cited by 24 · see citing works
“, peer-led groups) to teach and support them in communication, conflict resolution and use of supportive language.(62,63) Ideally this would be done in combination”
BackgroundBlake, L., Bray, L., & Carter, B. (2019) · Patient Education and Counseling · doi:10.1016/j.pec.2019.07.012 · Cited by 24 · see citing works
Carpenter, K. M., Foote, J. P., Hedrick, T., Collins, K., & Clarkin, S. (2019) · Addictive Behaviors · doi:10.1016/j.addbeh.2019.106103 · Cited by 24 · see citing works
“Specifically, parents providing support and sharing their experiences have found that the role of mentoring or coaching validates their own journey, can increase their self-worth, and enhances their level of support (Shilling et al., 2013).”
BackgroundChapter 25. Motivational Enhancement
Shulman, M., Pruzan, K., & Carpenter, K. M. (2021) · American Psychiatric Association Publishing eBooks · doi:10.1176/appi.books.9781615373970.kb25 · Cited by 23 · see citing works
Nageswaran, S., Gower, W. A., King, N. M. P., & Golden, S. L. (2022) · Palliative & Supportive Care · doi:10.1017/s1478951522001122 · Cited by 23 · see citing works
“Structured parent-to-parent peer support programs helped reduce stress in children with disability (Shilling et al., 2013; Bray et al., 2017).”
BackgroundRuiz‐Robledillo, N., & Moya‐Albiol, L. (2015) · Psychosocial Intervention · doi:10.1016/j.psi.2015.01.001 · Cited by 23 · see citing works
“Indeed, problemsolving therapy, psychoeducation, counseling, peer support interventions, and respite programs have been effective reducing stress perception and its negative effects, as well as significantly improving quality of life and well-being (Cheon, Chang, Kong, & Song, 2011; Martín-Carrasco et al., 2009; River…”
BackgroundInfluentialRutter, T., Hastings, R. P., Murray, C. A., Enoch, N., Johnson, S., & Stinton, C. (2024) · Clinical Psychology Review · doi:10.1016/j.cpr.2024.102426 · Cited by 28 · see citing works
“Support from other parents within peer support schemes may help to develop and affirm parents ’ sense of competence and positive outlook (Shilling et al., 2013).”
Review of parental activation interventions for parents of children with special health care needs
Mirza, M. P., Krischer, A., Stolley, M. R., Magaña, S., & Martin, M. A. (2018) · Child Care Health and Development · doi:10.1111/cch.12554 · Cited by 22 · see citing works
Feasibility of Parent-to-Parent Support in Recently Diagnosed Childhood Diabetes
Channon, S., Lowes, L., Gregory, J. W., Grey, L., & Sullivan‐Bolyai, S. (2016) · The Science of Diabetes Self-Management and Care · doi:10.1177/0145721716644673 · Cited by 22 · see citing works
“It is not possible to calculate the numbers of these types of schemes available in different countries, but in a systematic review of parent-to-parent peer support, only 3 of the 17 studies included were from the United Kingdom, compared with 11 from the United States.19 The time since diagnosis may also have had an e…”
ResultSocial Support Experiences in Parents of Children With ASD: A Qualitative Systematic Review
Gao, X., & Drani, S. (2025) · SAGE Open · doi:10.1177/21582440251336174 · Cited by 21 · see citing works
“Some systematic reviews have described the positive effects of peer support on the mental health of parents of children with neurodevelopmental disorders (Shilling et al., 2013; Wong & Shorey, 2022).”
Mardakis, S., Arora, R. S., Bakhshi, S., Arora, A., Anis, H., & Tsimicalis, A. (2018) · Cancer Reports · doi:10.1002/cnr2.1149 · Cited by 21 · see citing works
“Others have showcased the importance of parent groups within the context of childhood illness, demonstrating the positive impact on the mental health and adaptation of families.(37) On the basis of the results of this study, some recommendations can be made for the adoption of institutional interventions, which may he…”
BackgroundCasagrande, K. A., & Ingersoll, B. R. (2020) · Review Journal of Autism and Developmental Disorders · doi:10.1007/s40489-020-00208-9 · Cited by 21 · see citing works
Gore, N. J., Bradshaw, J., Hastings, R. P., Sweeney, J., & Austin, D. (2022) · Journal of Applied Research in Intellectual Disabilities · doi:10.1111/jar.12993 · Cited by 21 · see citing works
“These experiences resonated with reports from families who have accessed other specialist programmes and systems of peer-support (e.g., Borek et al., 2018; Dew et al., 2019; Dodds & Singer, 2017; Gore & Umizawa, 2011; Shilling et al., 2013) and were referenced in relation to engagement, learning and emotional support…”
BackgroundLake, J., Volpe, T., John, L. S., Thakur, A., Steel, L., Baskin, A., Durbin, A., Chacra, M. A., & Lunsky, Y. (2022) · Journal of Intellectual Disability Research · doi:10.1111/jir.12965 · Cited by 16 · see citing works
“Research has shown that involving family caregivers as leaders or peer supports in interventions that benefit other caregivers can reduce feelings of isolation and provide opportunities for personal growth, connection and learning (Bray et al. 2017; Burke et al. 2020; Dodds & Singer 2018; Muralidharan et al. 2021; Shi…”
BackgroundAddressing Mental Health in Pediatric Rheumatology
Rubinstein, T. B., Davis, A. M., Rodriguez, M. M., & Knight, A. (2018) · Current Treatment Options in Rheumatology · doi:10.1007/s40674-018-0092-4 · Cited by 21 · see citing works
Ufer, L. G., Moore, J., Hawkins, K., Gembel, G., Entwistle, D. N., & Hoffman, D. R. (2018) · Maternal and Child Health Journal · doi:10.1007/s10995-018-2477-2 · Cited by 20 · see citing works
Patients' experiences of coping with multiple chronic conditions: A qualitative descriptive study
Cheng, C., Bai, J., Yang, C., Li, M., Inder, K., & Chan, S. W. (2019) · Journal of Clinical Nursing · doi:10.1111/jocn.15022 · Cited by 19 · see citing works
Baum, A., Mulwafu, W., Phiri, M., Polack, S., & Bright, T. M. (2019) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph16173144 · Cited by 19 · see citing works
“However, there is some evidence that group-based peer support can allow parents to learn from the experiences of others, generate a shared social identity and improve health outcomes [24,25].”
BackgroundHunt, H. A., Whear, R., Boddy, K., Wakely, L., Bethel, A. C., Morris, C., Abbott, R. A., Prosser, S., Collinson, A. C., Kurinczuk, J. J., et al. (2018) · Systematic Reviews · doi:10.1186/s13643-018-0850-2 · Cited by 19 · see citing works
Self-citationMahmic, S., Kern, M. L., & Janson, A. (2021) · Frontiers in Psychology · doi:10.3389/fpsyg.2021.663640 · Cited by 17 · see citing works
Support needs of families with a child with profound intellectual and multiple disabilities
Lahaije, S. T. A., Luijkx, J., Waninge, A., & van der Putten, A. A. J. (2023) · International Journal of Developmental Disabilities · doi:10.1080/20473869.2023.2168718 · Cited by 17 · see citing works
Hunt, H. A., Abbott, R. A., Boddy, K., Whear, R., Wakely, L., Bethel, A. C., Morris, C., Prosser, S., Collinson, A. C., Kurinczuk, J. J., et al. (2019) · Journal of Neonatal Nursing · doi:10.1016/j.jnn.2019.03.011 · Cited by 18 · see citing works
Self-citationPostma, A., Ketelaar, M., Sevenaer, J. D. A. M. V. N. T., Downs, Z., van Rappard, D. F., Jongmans, M. J., & Zinkstok, J. (2024) · Child Care Health and Development · doi:10.1111/cch.13255 · Cited by 16 · see citing works
Dekel, I., Dorman-Ilan, S., Lang, C., Bar-David, E., Zilka, H., Shilton, T., Lebowitz, E. R., & Gothelf, D. (2020) · Child Psychiatry & Human Development · doi:10.1007/s10578-020-01082-6 · Cited by 16 · see citing works
Haas, B., Lavicza, Z., Houghton, T., & Kreis, Y. (2022) · Frontiers in Education · doi:10.3389/feduc.2022.872479 · Cited by 18 · see citing works
“Peer learning among parents (Shilling et al., 2013), as well highlighted in our previous remote research experience, seems to have a supportive and likely positive effect on the accomplishment of remote tasks with parent-assisted teaching.”
BackgroundGenetic Testing in the Pediatric Nephrology Clinic: Understanding Families' Experiences
Nevin, S. M., McLoone, J. K., Wakefield, C. E., Kennedy, S., & McCarthy, H. J. (2020) · Journal of Pediatric Genetics · doi:10.1055/s-0040-1721439 · Cited by 16 · see citing works
Shilling, V. M., Bailey, S. E. R., Logan, S., & Morris, C. (2015) · Child Care Health and Development · doi:10.1111/cch.12222 · Cited by 16 · see citing works
“In our recent systematic review (Shilling et al. 2013), qualitative studies reported that parents experienced peer support as extremely beneficial, although this was not consistently supported by quantitative studies examining changes in psychological health or family function.”
BackgroundSelf-citationLust, J. M., Adams, I. L. J., Reinders‐Messelink, H. A., Luijckx, J., Schoemaker, M. M., & Steenbergen, B. (2021) · Child Care Health and Development · doi:10.1111/cch.12914 · Cited by 15 · see citing works
Peer Support Experienced by Mothers of Children With Congenital Heart Defects in Sweden
Carlsson, T., & Mattsson, E. (2022) · Journal of Family Nursing · doi:10.1177/10748407211067788 · Cited by 18 · see citing works
“More specifically, peer support among parents of children with disabilities can result in shared social identities, mutual exchanges of information, personal growth, and reciprocal benefits related to communicating support to others (Shilling et al., 2013).”
BackgroundCoulman, E., Gore, N. J., Moody, G., Wright, M., Segrott, J., Gillespie, D., Petrou, S., Lugg-Widger, F. V., Kim, S. W., Bradshaw, J., et al. (2022) · Public Health Research · doi:10.3310/heyy3556 · Cited by 16 · see citing works
Schippke, J., Provvidenza, C. F., & Kingsnorth, S. (2017) · Child Care Health and Development · doi:10.1111/cch.12494 · Cited by 15 · see citing works
Raz, A. E., Amano, Y., & Timmermans, S. (2018) · New Genetics and Society · doi:10.1080/14636778.2018.1451315 · Cited by 15 · see citing works
“The literature on parental peer support in the context of child health care is especially scarce (Shilling et al. 2013).”
BackgroundParents’ views and experiences of raising babies born with cleft lip and palate: a qualitative study
Alinezhad, D., Mohammadi, F., Kharazifared, M. J., Gholami, M., Sarmadi, S., & Razeghi, S. (2025) · BMC Pediatrics · doi:10.1186/s12887-024-05379-6 · Cited by 15 · see citing works
“This finding resonates with studies on peer support, which show that sharing experiences can alleviate feelings of isolation and empower parents by offering practical advice and emotional comfort [34, 35].”
Randomised Controlled Trial of a Therapeutic Playgroup for Children with Developmental Delays
Armstrong, J., Girdler, S. J., Davidson, E., Mizen, J., Bear, N., Wray, J. A., & Elliott, C. M. (2020) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-020-04580-7 · Cited by 14 · see citing works
Jigyel, K., Miller, J., Mavropoulou, S., & Berman, J. (2019) · Australasian Journal of Special and Inclusive Education · doi:10.1017/jsi.2019.3 · Cited by 14 · see citing works
“Therefore, it can be argued that a ‘shared social identity with other parents’ (Shilling et al., 2013, p. 605) can foster a sense of community, belonging, and empowerment, and alleviate feelings of isolation and guilt (Lo, 2010; McCabe, 2008; Shilling et al., 2013).”
BackgroundInfluentialMills, A. S., Vimalakanthan, K., Sivapalan, S., Shanmugalingam, N., & Weiss, J. A. (2020) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-020-04538-9 · Cited by 14 · see citing works
Analysis of Support for Parents in Raising Children with Dyslexia
Rauf, A. A. A., Ismail, M. A., Balakrishnan, V., Cheong, L. S., Admodisastro, N. I., & Haruna, K. (2020) · Journal of Family Issues · doi:10.1177/0192513x20948925 · Cited by 14 · see citing works
“Four themes of the main reasons for support groups have been identified in a study by (Shilling et al., 2013), which includes the learning from the experiences of others, sharing a social identity, supporting others, and for personal growth.”
BackgroundBatchelor, M., Maguire, S., & Shearn, J. (2020) · Journal of Applied Research in Intellectual Disabilities · doi:10.1111/jar.12804 · Cited by 14 · see citing works
Problem gambling during Covid-19
Frisone, F., Alibrandi, A., & Settineri, S. (2020) · Mediterranean Journal of Clinical Psychology · doi:10.6092/2282-1619/mjcp-2457 · Cited by 15 · see citing works
Michelson, D., Ben-Zion, I., James, A. I., Draper, L., Penney, C., & Day, C. (2014) · Archives of Disease in Childhood · doi:10.1136/archdischild-2013-304936 · Cited by 14 · see citing works
Ahola Kohut, S., Martincevic, I., Turrell, S. L., Church, P. C., Walters, T. D., Weiser, N., & Iuliano, A. (2021) · Children · doi:10.3390/children8050396 · Cited by 13 · see citing works
“Our findings are similar to those in the literature whereby systematic reviews of parent interventions in chronic disease find consistently strong positive qualitative findings but inconsistent results on parent reported quantitative outcomes [60].”
ResultManu, E., Douglas, M., & Ayanore, M. A. (2020) · South African Journal of Psychiatry · doi:10.4102/sajpsychiatry.v26i0.1477 · Cited by 13 · see citing works
Evaluation of the Perceived Benefits of a Peer Support Group for People with Mental Health Problems
Beard, D., Cottam, C., & Painter, J. (2024) · Nursing Reports · doi:10.3390/nursrep14030124 · Cited by 17 · see citing works
“Research indicates that such services can improve social function, quality of life, and self-efficacy in individuals with severe mental illness [25], with peer education enhancing patient compliance and self-awareness in depression treatments specifically [26,27].”
BackgroundThe Experiences and Support Needs of Grandparents of Children Born With Cleft Lip and/or Palate
Guest, E., Costa, B., McCarthy, G., Cunniffe, C., & Stock, N. M. (2019) · The Cleft Palate-Craniofacial Journal · doi:10.1177/1055665619850709 · Cited by 13 · see citing works
Prest, K., Borek, A., & Boylan, A. R. (2022) · Child Care Health and Development · doi:10.1111/cch.12962 · Cited by 12 · see citing works
“Studies have shown that reciprocity of support is an important aspect of social support among parents of children with complex needs (Kingsnorth et al., 2011; Law et al., 2002; Reid et al., 2011; Shilling et al., 2013; Solomon et al., 2001).”
BackgroundResultInfluentialWynter, K. H., Hammarberg, K., Sartore, G., Cann, W. G., & Fisher, J. (2014) · Evaluation and Program Planning · doi:10.1016/j.evalprogplan.2014.12.019 · Cited by 12 · see citing works
- Authors
- Shilling, V., Morris, C., Thompson‐Coon, J., Ukoumunne, O., Rogers, M., & Logan, S.
- Affiliations
- Peninsula Cerebra Research Unit University of Exeter Medical School Exeter UK
- University of Exeter (GB)
- NIHR PenCLAHRC University of Exeter Medical School Exeter UK
- Venue
- Developmental Medicine & Child Neurology
- Publisher
- Wiley
- Published
- 2013-02-19
- Volume
- 55
- Issue
- 7
- Pages
- 602-609
- ISSN
- 0012-1622 (ISSN-L)
- 1469-8749
- OpenAlex
- W2052567464
- Cited by
- 247
- References
- 41
- Citations by year
- 2026: 16 · 2025: 26 · 2024: 19 · 2023: 20 · 2022: 25 · 2021: 21 · 2020: 30 · 2019: 27 · 2018: 25 · 2017: 9 · 2016: 11 · 2015: 8 · 2014: 8 · 2013: 1
- FWCI
- 1.35
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Developmental Medicine & Child Neurology (publishedVersion)
- PubMed (publishedVersion)
- Sussex Research Online (University of Sussex) (submittedVersion)
- Figshare (submittedVersion, cc-by)
- Funders
- National Institute for Health and Care Research
- Cerebra
- Topics
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- peer support, parent-to-parent support, child disability, psychological well-being, family impact, social identity, personal growth, economic burden
- MeSH terms
- Adult, Child, Persons with Disabilities, Humans, Parents, Peer Group, Social Support, Qualitative Research
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