Involving self‐help groups in health‐care institutions: the patients’ contribution to and their view of ‘self‐help friendliness’ as an approach to implement quality criteria of sustainable co‐operation

Nickel, Stefan; Trojan, MSc and Alf; Kofahl, Christopher

doi:10.1111/hex.12455

Cited by 23 publications

(32 citation statements)

References 37 publications

(47 reference statements)

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“…These practices have been deemed best practices for good research collaborations. These practices have been deemed best practices for good research collaborations . For example, having an on‐going group meeting at the partner clinic's conference room to incorporate parent voices in the research process positively influenced the implementation of study protocols, analysis plan, data collection and dissemination of results.…”

Section: Discussionmentioning

confidence: 99%

Involving Latina/o parents in patient‐centered outcomes research: Contributions to research study design, implementation and outcomes

Jolles

Martínez

García

et al. 2017

Health Expectations

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BackgroundComparative effectiveness research (CER) is supported by policymakers as a way to provide service providers and patients with evidence‐based information to make better health‐care decisions and ultimately improve services for patients. However, Latina/o patients are rarely involved as study advisors, and there is a lack of documentation on how their voices contribute to the research process when they are included as collaborators.ObjectivesThe purpose of this article was to contribute to the literature by presenting concrete contributions of Latina/o parent involvement to study design, implementation and outcomes in the context of a CER study called Padres Efectivos (Parent Activation).MethodsResearchers facilitated a collaborative relationship with parents by establishing a mentor parent group. The contributions of parent involvement in the following stages of the research process are described: (i) proposal development, (ii) implementation of protocols, (iii) analysis plan and (iv) dissemination of results.ResultsMentor parents’ contributions helped tailor the content of the intervention to their needs during proposal, increased recruitment, validated the main outcome measure and added two important outcome measures, emphasized the importance of controlling for novice treatment status and developed innovative dissemination strategies.ConclusionsMentor parents’ guidance to the researchers has contributed to reaching recruitment goals, strengthened the study protocol, expanded findings, supported broad ownership of study implications and enriched the overall study data collection efforts. These findings can inform future research efforts seeking an active Latino parent collaboration and the timely incorporation of parent voices in each phase of the research process.

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Section: Discussionmentioning

confidence: 99%

Involving Latina/o parents in patient‐centered outcomes research: Contributions to research study design, implementation and outcomes

Jolles

Martínez

García

et al. 2017

Health Expectations

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“…Self-help groups and organizations offering mutual help and peer-to-peer support are widespread, sometimes supported by nationwide self-help support systems. An example is a self-help friendliness initiative in Germany aimed at implementing wider cooperation between self-help associations and health care providers (Nickel, Trojan & Kofahl, 2017). In a health-promotion perspective, self-help is considered a key element for coping or empowerment processes for people with long-lasting health problems (Aglen, Hedlund & Landstad, 2011).…”

Section: Involvement As Sharing Of Lived Experiencementioning

confidence: 99%

Service user involvement and repositioning ofhealthcare professionals: A framework for examining implicationsof different forms of involvement

Andreassen¹

2018

Nordisk välfärdsforskning | Nordic Welfare Research

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Models or measures to strengthen the position of service users not only change the position of the users, they also alter the position of the professionals involved. However, different forms of involvement alter the position of professionals differently. The aim of this article is to present an analytical framework that allows for an examination of different, ideal types of involvement, and their implications for the positioning of professionals. Three basic forms of involvement are identified: involvement as a) self-determination and self-management, b) sharing of lived experience, and c) co-management and mediation of causes and concerns. Within each of these basic forms, different models or measures are classified according to the positions of patients and professionals respectively. The framework shows that professionals are repositioned as facilitators, not only therapists; as partners and co-workers, rather than sole experts; as learners, rather than experts and teachers; and as recipients rather than in the position of offering knowledge and skills. While detailed and long-term investigation is necessary to determine the impact of involvement in actual cases, the presence of models and measures to strengthen the position of the users in various ways transforms the context of professional work, as well as the classic meaning of professionalism.

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“…The development of self-help friendliness did neither follow a "master-plan" nor a rigorously designed intervention concept. The process should rather be considered as a complex participative research program, which has been described in a recent publication more comprehensively [49]. The development comprised a number of empirical surveys and practiceoriented demonstration projects.…”

Section: Developing the Approachmentioning

confidence: 99%

“…Staff members of the Hamburgian Institute of Medical Sociology accompanied the process as consultants. Eight criteria for good collaboration between hospitals and SHGs were developed [49]:…”

Section: Development Of Self-help Friendliness In Hospital Carementioning

confidence: 99%

Patient-Centered Medicine and Self-Help Groups in Germany: Self-Help Friendliness as an Approach for Patient Involvement in Healthcare Institutions

Trojan

Kofahl

Nickel

2017

Patient Centered Medicine

Self Cite

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Collaboration between laypersons and professionals is closely linked to the concept of patient centeredness. Patient centeredness means meeting the needs of individual patients as well as reacting to patients' demands on the collective level. The support of self-help groups and their integration into healthcare institutions represent a major policy approach to fulfilling this requirement. Here, we first deal with the concept of patient centeredness in general, and the understanding of concept and use in Germany. We also provide a short definition of self-help friendliness (SHF) and discuss the success achieved in implementing it in Germany so far. We then clarify the closely related concepts of patient centeredness, patient participation and patient involvement SHF is seen as a strategy for increasing both patient centeredness and patient participation in healthcare services. We subsequently describe the involvement of self-help groups and patient associations in a series of empirical studies and practice-oriented projects carried out between 2004 and 2013. The last section contains a general discussion of the SHF approach as a means of systematically increasing sustainable patient centeredness and patient participation in healthcare services. Finally, we address the chances for future development in Germany and the transferability of SHF to other countries.

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Involving self‐help groups in health‐care institutions: the patients’ contribution to and their view of ‘self‐help friendliness’ as an approach to implement quality criteria of sustainable co‐operation

Cited by 23 publications

References 37 publications

Involving Latina/o parents in patient‐centered outcomes research: Contributions to research study design, implementation and outcomes

Involving Latina/o parents in patient‐centered outcomes research: Contributions to research study design, implementation and outcomes

Service user involvement and repositioning ofhealthcare professionals: A framework for examining implicationsof different forms of involvement

Patient-Centered Medicine and Self-Help Groups in Germany: Self-Help Friendliness as an Approach for Patient Involvement in Healthcare Institutions

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