“[A] person-centred health care system [is] one that supports us to make informed decisions, helps us to successfully manage our own health and care, and delivers care with respect for our individual abilities, preferences, lifestyles and goals.”

This quote is taken from the Health Policy Partnership report published in 2015 (Harding et al, 2015), part of an international project devised to build an overarching picture of the ‘state of play’ in person-centred care.

Putting patients at the centre of their care is something that has featured in just about every annual report and health strategy document I’ve read in the last few years. Just like ‘evidence-based’ and ‘shared-decision making‘, it’s a phrase that we read all the time, but is there any evidence that we’re actually doing it? Previous research suggests not (Wolpert et al, 2015), which means we run the risk of losing patients who may rightly feel alienated, but there is evidence that including young people in the decision making around their mental health care leads to better involvement and engagement (e.g. Simmons et al, 2011).

To date, work in this area has focused on adult service user-involvement in care planning (Bee et al, 2015), so it’s good to see a qualitative systematic review that explores the “factors influencing person-centred care in mental health services for children, young people and families examining perspectives from professionals, service users and carers”.

Methods

This well conducted systematic review was carried out according to PRISMA guidelines. The methods are clearly set out in the paper, which mentions the search protocol and PICO strategy in a way that gave me a warm fuzzy feeling when reading it (old librarian habits never die). They searched a wide range of databases (Ovid MEDLINE, PsycExtra, PsycINFO, Embase, PsycInfo, Web of Science and CINAHL) up until 6 November 2015 and did all of the things you want from a systematic review search (i.e. followed up reference lists, contacted authors of published studies, searched the grey literature).

They were looking for qualitative studies about children and young people in a mental health setting, which focused on patient-centred care, shared/collaborative decision-making, information sharing or patient participation.

They found 7,676 (after duplicates were removed) and whittled this down to 23 studies (10 of which were carried out in the UK) using a robust method (i.e. two reviewers screening the articles with a third reviewer brought in to decide in cases of disagreement (n=1)).

They very sensibly used the excellent CASP qualitative research checklist (PDF) to assess the risk of bias of the included studies.

They extracted data about facilitators and barriers across four levels:

1. Patient-level and carer-level factors (e.g. motivation and beliefs)
2. Professional-level factors (e.g. attitude towards person-centred care or shared decision-making and motivation)
3. Organisational-level (e.g. organisational climate and culture, and leadership)
4. Structural and sociocultural context (e.g. politics, funding and community- level factors)

The facilitators and barriers could be reported by professionals (e.g. clinicians), service users (the children and young people) and carers (e.g. parents or legal guardians).

As this was a systematic review of qualitative studies, the reviewers conducted a narrative synthesis of factors affecting the provision of person-centred care in child and young people’s mental health services, which considered the similarities and differences between these factors as reported by the different stakeholder groups (professionals, service users and carers).

Results

The 23 included studies were conducted in a range of different countries (UK (n=10), USA (n=4), elsewhere in Europe (n=5), Australia (n=2), Hong Kong (n=1) and Canada (n=1)) and settings (child and young people’s mental health services (n=5), other specialised mental health services (e.g., psychiatric clinics, psychiatric emergency services and eating disorders; n = 14) and community-based services (n = 2)). Data was generally collected using interviews or focus groups, and common methods of data analysis were thematic analysis and interpretative phenomenological analysis. The sample sizes of the included studies ranged from 6 to 406 participants.

Professional level factors

• Lack of sharing information regarding treatment: mainly described as a barrier to person-centred care, but also described as a facilitator when it does happen
• Listening to service users and carers, and respecting/validating their opinions: mainly described as a facilitator of person-centre care, but also a barrier when it does not happen
• Safeguarding concerns: described as a barrier to changing practice
• Other notable barriers were:
  • Reluctance to discuss sexual side-effects of medication
  • Difficulty in aligning views across a multidisciplinary team
• Other notable facilitators were:
  • Being flexible and trusting young people to be involved
  • Making the effort to ensure person-centred care in implemented

Relationship level factors

• The quality of the relationship between professionals and service users/carers: a key facilitator of person-centre care, but also a barrier when support and relationships are poor
• Communication between professionals and service users: cited as a facilitator (interestingly only) by service users, with a lack of communication a barrier to person-centred care
• Other notable barriers were:
  • The power imbalance between professionals and service users
  • Lack of continuity in relationships as a result of seeing many different professionals

Service user level/Carer level factors

• Capacity to be involved in decision-making: age, symptom severity and issues of confidentiality were all raised as possible barriers to person-centred care. Of course capacity changes so greater involvement may be feasible when it is appropriate
• Parental/carer involvement: a facilitator of person-centred care, and an important surrogate for decision making when service users are unwell. Involving carers in treatment was viewed as beneficial for both service users and carers themselves. Parental over-involvement was also sometimes viewed as a barrier to person-centred care
• Mental health stigma: professionals reported that preconceived ideas about mental illness and previous experience of services may act as barriers to person-centred care for service users

Service level factors

• Notable barriers were:
  • Lack of resources (staff and time)
  • Lack of age-appropriate information
  • Limited and inflexible treatment options
  • Extensive policies and regulations
  • Lack of information sharing (sharing confidential information with carers when service-user reaches a certain age)
• Facilitators included:
  • Collaborative team culture
  • Providing parents with continued support when service users are unwell
  • Improved cultural competence

Context level factors

• Professionals reported:
  • A lack of research evidence, which in turn prevented them from sharing evidence and information with service users
  • A lack of funding for services, which resulted in fewer sessions for young people and their carers.

Conclusions

This systematic review found similar facilitators and barriers to person-centred care in child and young people’s mental health as were previously reported in adult mental health settings (Bee et al, 2015), which means that recommendations may help improve person-centred care for both adults and young people:

The most commonly reported factors affecting provision of person-centred care were information sharing (in an appropriate amount and at a right time), listening, respecting and validating, quality of relationship and support, capacity of children and young people to be involved in their care, parental involvement and shortage of resources. These factors were cited as both facilitators and barriers and were found to be universally important by service users, their carers and professional working at the services.

The key recommendations of the review to improve provision of person-centred care are providing professionals with more training in using the approach, supporting them to use it flexibly to meet the unique needs of service users whilst also being responsive to times when it may be less appropriate and improving both the quantity and quality of information for service users.

Strengths and limitations

This is a really strong piece of work; methodologically robust, nicely reported and responsibly summarised for practitioners. The key strengths are:

• A clear and focused question for the systematic review
• A systematic and reproducible search of the literature, including a wide range of databases, and paying attention to reference lists, grey literature and even contacting authors to find additional papers (tactics that did indeed unearth two extra studies)
• Clearly reported risk of bias assessment in a systematic review of qualitative research. The reviewers state that: “the evidence produced in most of the included studies can be deemed as valid and free of serious biases according to the CASP tool” and they go on to explain some of the methodological and reporting flaws of the included research. If only all reviews of qualitative research had this attention to detail!
• Narrative synthesis of results, examined from the perspective of service users, carers and professionals.

Limitations are harder to identify, but if I was being super-critical I would say that they could have done more on these fronts:

• Two independent reviewers did screen the full-text articles assessed for eligibility, but only one reviewer looked at all the papers. The second reviewer looked a random 10% sample
• There was quite a bit of variation across the included studies, both in terms of the countries where the work was carried out, the methods used to collect data, and the study settings.

Questions for the #WeMHNs tweet chat

This review is being discussed at two meetings today:

• The latest in a series of #SoWhatSeminars run by our friends at the Anna Freud Centre
• A We Mental Health Nurses tweet chat featuring @mirandarwolpert @_common_room @VanessaLGarrity that kicks off this evening at 8pm. Please join in at #WeMHNs and help answer these questions:
  • What does person-centred care look like to clinicians and young people?
  • How can clinicians better involve children and young people in decisions about their mental health?
  • What support is required for professionals to provide person-centred care?
  • What are the key factors affecting provision of person-centred care?
  • What are the barriers to person-centred care, in the eyes of children and young people?
  • What can services do to promote person-centred care?

Links

Primary paper

Gondek D, Edbrooke-Childs J, Velikonja T, Chapman L, Saunders F, Hayes D, Wolpert M. (2016) Facilitators and Barriers to Person-centred Care in Child and Young People Mental Health Services: A Systematic Review. Clin-Psychol-Psychother DOI: 10.1002/cpp.2052. [Abstract]

Other references

Bee P, Price O, Baker J, Lovell K. (2015). Systematic synthesis of barriers and facilitators to service user-led care planning. British Journal of Psychiatry, 207(2), 104–114. DOI:10.1192/bjp. bp.114.152447.

Harding E, Wait S, Scrutton J. (2015) The state of play in person-centred care: A pragmatic review of how person-centred care is defined, applied and measured (PDF). The Health Policy Partnership [Website]

Simmons MB, Hetrick SE, Jorm AF. (2011) Experiences of treatment decision making for young people diagnosed with depressive disorders: A qualitative study in primary care and specialist mental health settings. BMC Psychiatry, 11, 194. DOI:10.1186/1471-244X-11-194.

Wolpert M et al. (2015) Closing the gap through changing relationships (PDF). The Health Foundation. [Website]

Photo credits

• Johanna Hardell CC BY 2.0
• Todd Huffman CC BY 2.0