Background Personalised care planning is a collaborative process used in chronic condition management in which patients and clinicians identify and discuss problems caused by or related to the patient's condition, and develop a plan for tackling these. In essence it is a conversation, or series of conversations, in which they jointly agree goals and actions for managing the patient's condition. Objectives To assess the effects of personalised care planning for adults with long-term health conditions compared to usual care (i.e. forms of care in which active involvement of patients in treatment and management decisions is not explicitly attempted or achieved). Search methods We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE, PsycINFO, ProQuest, clinicaltrials.gov and WHO International Clinical Trials Registry Platform to July 2013. Selection criteria We included randomised controlled trials and cluster-randomised trials involving adults with long-term conditions where the intervention included collaborative (between individual patients and clinicians) goal setting and action planning. We excluded studies where there was little or no opportunity for the patient to have meaningful influence on goal selection, choice of treatment or support package, or both. Data collection and analysis Two of three review authors independently screened citations for inclusion, extracted data, and assessed risk of bias. The primary outcomes were effects on physical health, psychological health, subjective health status, and capabilities for self management. Secondary outcomes included effects on health-related behaviours, resource use and costs, and type of intervention. A patient advisory group of people with experience of living with long-term conditions advised on various aspects of the review, including the protocol, selection of outcome measures and emerging findings.

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BackgroundEvidence-based medicine (EBM) is maturing from its early focus on epidemiology to embrace a wider range of disciplines and methodologies. At the heart of EBM is the patient, whose informed choices have long been recognised as paramount. However, good evidence-based care is more than choices.DiscussionWe discuss six potential ‘biases’ in EBM that may inadvertently devalue the patient and carer agenda: limited patient input to research design, low status given to experience in the hierarchy of evidence, a tendency to conflate patient-centred consulting with use of decision tools; insufficient attention to power imbalances that suppress the patient’s voice, over-emphasis on the clinical consultation, and focus on people who seek and obtain care (rather than the hidden denominator of those that do not seek or cannot access care).SummaryTo reduce these ‘biases’, EBM should embrace patient involvement in research, make more systematic use of individual (‘personally significant’) evidence, take a more interdisciplinary and humanistic view of consultations, address unequal power dynamics in healthcare encounters, support patient communities, and address the inverse care law.

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Background  For parents of disabled children, the role of advocate often develops to a level of frequency and complexity that other parents do not usually face. This paper considers whether this high level of advocacy translates into a form of activism on the part of mothers and if so, why this shift might occur. Materials and Methods  The broader study from which the data are taken aimed to explore the experiences of living with autism. Qualitative methods were used to understand how participants made sense of their lives and negotiated the social world. This analysis is based on interviews with 36 mothers of children on the autism spectrum. Results  Most mothers adopted an enhanced advocacy role acting either independently or collectively through involvement with support groups. In both cases, some mothers demonstrated an activist role and extended their efforts towards campaigning for change outside of their families. Conclusions  Mothers’ experiences do not sit comfortably within existing articulations of activism but suggest that advocacy and activism may be experienced on a continuum. For many mothers, advocacy and activism are a major part of the experience of mothering a disabled child yet this remains a largely unrecognized role.

Advocates of online alternatives to face-to-face interviewing suggest online approaches save money and time, whereas others have raised concerns about the quality and content of the resulting data. These issues affect researchers designing and costing their studies and application reviewers and research funders. We conducted a scoping review of English language articles describing the range of online alternative approaches. Furthermore, we systematically identified studies directly comparing online alternatives with face-to-face approaches. Synthesis of these 11 articles (565 participants) suggests that online alternatives should not be viewed as a straightforward replacement for face-to-face, a particularly important finding given the rapid communication changes occurring in the COVID-19 pandemic. When applied with consideration of the evolving evidence on their strengths and weaknesses, online methods may increase the likelihood of obtaining the desired sample, but responses are shorter, less contextual information is obtained, and relational satisfaction and consensus development are lower.

Health professionals should acknowledge parents' concerns carefully; contrary to intentions, early reassurance may result in parents feeling that their concerns have not been heard. Parents may be the best resource in identifying ASC.

The qualitative study from which the data reported here are taken, explored the experiences, support and information needs of parents of children diagnosed with autism spectrum disorders. 46 parents were interviewed either individually or in couples. Thematic analysis of the data revealed the complexity involved for the parents in taking their children out in public places. The emotion work parents conduct in public places both to make their children more acceptable within the space and to reduce the discomfort that others experience, helps to preserve the orderliness of public places. However, the special competence that parents developed over time also masks their turbulent feelings in public encounters.