The role of patient advocacy/parent support groups

Hall, Judith G.

doi:10.7196/samj.6976

Cited by 22 publications

(18 citation statements)

References 23 publications

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“…Traditionally peer support has been in the form of mailing lists, newsletters, discussion fora, and chat rooms [26]. However, it was evident in this study that Web-based engagement and exchange of information with other parents provided support and created a sense of belonging, which in turn reduced the feeling of exclusion, as has been reported by others [3,7,10,17,19,20,27-29]. …”

Section: Discussionmentioning

confidence: 52%

Internet Use by Parents of Children With Rare Conditions: Findings From a Study on Parents’ Web Information Needs

Nicholl¹,

Tracey²,

Begley³

et al. 2017

J Med Internet Res

104

137

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BackgroundParents of children with rare conditions increasingly use the Internet to source information on their child’s condition. This study reports on part of a larger study whose overall aim was to identify the Internet use by parents when seeking information on their child’s rare condition, with the specific purpose of using the findings to aid in the development of a website specifically designed to meet the parents’ needs. It presents findings on why these parents use the Internet, the information and support content they source, and the impact these resources have on their capacity to care for and manage their child’s condition.ObjectiveTo (1) ascertain parents’ general Internet usage patterns, (2) identify the nature of the information parents most frequently searched for, and (3) determine the effect the Internet-sourced information had on parents of children with rare conditions.MethodsData collection was conducted in 2 parts: Part 1 was a focus group interview (n=8) to inform the development of the questionnaire, and Part 2 was a questionnaire (Web- and paper-based). All respondents (N=128) completed the questionnaire using the Internet.ResultsParents frequently and habitually used the Internet and social media to gather information on their child’s condition. These Web-based resources provide parents with a parent-to-parent support platform that allows them to share their experiences and information with other parents, which, the respondents considered, improved their knowledge and understanding of their child’s condition. The respondents also reported that these resources positively impacted on their decision making, care, and management of their child’s condition. However, they reported receiving mixed responses when wishing to engage and share with health care professionals their Internet and social media interactions and information outcomes.ConclusionsThis study adds to the emerging body of research on the Internet use by parents of children with rare conditions to source information on their child’s condition. The evolving and ever increasing parent-to-parent support systems via social media are impacting on parents’ capacity to manage their children. Implications for practice include health care professionals’ response to this knowledge and capacity shift, and the significance of these changes when interacting with parents. The key message of this study was that parents of children with rare conditions are habitual users of the Internet to source information about their children’s conditions. Social media, especially Facebook, has an increasing role in the lives of these parents for information and support. Parents’ interest in information gathering and sharing includes a desire for shared dialogue with health care professionals.

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Section: Discussionmentioning

confidence: 52%

Internet Use by Parents of Children With Rare Conditions: Findings From a Study on Parents’ Web Information Needs

Nicholl¹,

Tracey²,

Begley³

et al. 2017

J Med Internet Res

104

137

View full text Add to dashboard Cite

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“…Our results suggest that families with young children in particular would benefit from support targeting these uncertainties and coping with diagnosis and treatment. In addition, immediately at diagnosis, patients should be informed about support groups, which have been shown to be important informational resources in rare disorders (Hall 2013;Khangura et al 2015). Accordingly, the majority of participants in this study greatly appreciated the exchange with others in the context of the interviews and expressed their wish to have this opportunity more frequently.…”

Section: Discussionmentioning

confidence: 98%

Living with Intoxication-Type Inborn Errors of Metabolism: A Qualitative Analysis of Interviews with Paediatric Patients and Their Parents

et al. 2016

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Introduction: Progress in diagnosis and treatment of patients with intoxication-type inborn errors of metabolism (IT-IEM) such as urea cycle disorders, organic acidurias or maple syrup urine disease is resulting in a growing number of long-term survivors. Consequently, health-related quality of life (HrQoL) of patients is increasingly regarded as a meaningful outcome parameter. To develop the first validated, disease-specific HrQoL questionnaire for IT-IEM, patients and parents were interviewed as content experts to identify major physical and psychosocial constraints and resources.Methods: Focus group interviews with 19 paediatric IT-IEM patients and 26 parents were conducted in four metabolic centres in Austria, Germany and Switzerland. Disease-specific HrQoL categories were established by qualitative content analysis.Results: Fourteen disease-specific topics related to the three well-established generic HrQoL dimensions of physi-

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“…In the paediatric health setting, the growth of e‐health, social media and networking sites has resulted in increasing numbers of parents seeking health information online on behalf of their child, and there is a growing literature examining this phenomenon. Reported positive effects of OHIS include the emergence of more ‘informed’ parents, more balance in the clinician–parent relationship, more collaborative consults and opportunities for greater parental support . Negative effects include proliferation of misleading information, increased possibility for conflict between clinicians and parents and less ‘efficient’ clinical encounters due to discussing online information .…”

mentioning

confidence: 99%

Paediatric clinicians' experiences of parental online health information seeking: A qualitative study

Shervington

Wimalasundera

Delany

2019

J Paediatrics Child Health

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Aim: The aim of this research was to explore clinicians' experiences of parents' online health information seeking (OHIS) behaviour about selective dorsal rhizotomy for the management of cerebral palsy. Methods: Using qualitative methodology, clinicians likely to have had experience with parents requesting selective dorsal rhizotomy were invited to participate in semi-structured interviews. Interviews with 13 clinicians were recorded, transcribed and inductive content analysis was used to identify, code and organise the data into themes. Results: Participants highlighted how parental OHIS was changing clinical communication. Negative effects included a shift in clinicians' attention from giving advice and guidance to spending time discussing online findings, justifying how this information applies to a particular child and managing parents' judgments about clinical views. Positive effects included more collaboration and sharing of ideas. These results are presented in three main themes: (i) the informed parent; (ii) the clinicians' role; and (iii) a new clinical dynamic. Conclusion: This research reinforces the notion that OHIS is changing the communication dynamic and clinicians' and parents' roles within the clinical encounter. Of significance was the number of challenges clinicians are facing as a result of online information, including managing parental understanding of non-evidenced information and responding to negative feedback about their practice. This research suggests a need for educational support and ongoing professional development for clinicians to assist them to adjust to new goals and expectations of clinical interactions with 'informed' parents.

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The role of patient advocacy/parent support groups

Cited by 22 publications

References 23 publications

Internet Use by Parents of Children With Rare Conditions: Findings From a Study on Parents’ Web Information Needs

Internet Use by Parents of Children With Rare Conditions: Findings From a Study on Parents’ Web Information Needs

Living with Intoxication-Type Inborn Errors of Metabolism: A Qualitative Analysis of Interviews with Paediatric Patients and Their Parents

Paediatric clinicians' experiences of parental online health information seeking: A qualitative study

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