Article Text

PDF

Bringing different perspectives to bear on health care
  1. T Smith
  1. Senior Policy Analyst, Health Policy & Economic Research Unit, British Medical Association, London WC1H 9JR, UK; tsmithbma.org.uk

    Statistics from Altmetric.com

    This JournalScan concentrates on two issues. The first two papers examine interprofessional collaboration and find that doctors and nurses tend to understand the term in different ways. The rest of the papers concentrate on ways of better relating community and group voices to health care so that services can be more responsive.

    Interprofessional collaboration in English hospitals ▸

    This paper begins by making the point that “enhancing collaboration between different health and social care professionals is a key aspect of modernising health and social care systems” but notes that “in practice … factors such as insufficient time for team building, confused team roles, the effects of professional socialisation, power and status differentials, and the vertical management of professionals can all undermine attempts to work collaboratively”.

    The study examines the meaning different professionals attach to their collaborative work. The research was undertaken in the general and emergency medical directorate of a large inner city teaching hospital in the south of England and draws on “individual and group interviews” with doctors, nurses, therapists, and social workers (n = 49) as well as “participant observation of ward based work” over 3 months.

    Observation concentrated on two wards. The first had retained the traditional “Nightingale” arrangement with 27 beds organised in long dormitories. The nurses’ station was located at the entrance to the ward. The second ward had a more modern design with the 27 beds organised into three bays and the nurses’ station situated between two of the bays. In both cases the bays were the focal point for verbal interaction between professionals.

    The researchers found that interprofessional collaboration consisted largely of short, unstructured, and often opportunistic interactions. They found wards busy and therefore not conducive to drawn out discussions. They also saw that a large number of professionals come and go and the wards had up to 15 doctors from five or six different medical teams; 10 members of the nursing staff; 3–4 therapists; two social workers; a pharmacist; and two care coordinators.

    In this context the notion of a clearly defined multiprofessional “team” is misleading. Rather, the professionals appeared to form loose, transient “working groups”, both around particular patients and with other professionals with whom they frequently worked. The authors consider that the notion of “knotworking” has more resonance.

    Most interactions were between nurses and (mainly) junior doctors (accounting for 53% of all observed interactions); 75% of these were initiated by doctors. Doctor-initiated interactions focused on communicating information or giving instructions whereas nurse-initiated interactions concentrated on requesting information on patient care and readiness for discharge. Ward-based collaboration involving doctors and nurses tended to be based upon terse verbal interactions, each lasting 1–2 minutes. These were business-like in nature and “were stripped of the usual social niceties such as a greeting”. The authors state that this professional etiquette, which allows the stripping away of the normal social elements of communication, appeared to reduce people to “representatives” of their profession. There were occasions when small talk occurred, but this was uncommon and occurred when wards were quiet and social interactions would not delay task completion. Given that a large number of doctors come into the wards, the environment is not conducive to the development of any social rapport.

    Interestingly, collaborative work between the nurses, therapists, pharmacists, social workers and care coordinators was based on interactions that were generally more friendly, less rushed, and often involved a more in-depth discussion of patient care. The authors also observed that the nurses often had considerable physical contact with one another—for example, “a nurse might pat a colleague on the shoulder or two nurses might sit very close together at the nurses’ station”. This “physical intimacy” was not observed in any other interaction.

    Nurses and other professionals blamed the “medical firm” form of organisation for problems in collaboration. One told the researchers: “The doctors don’t think about the rest of the team often … they think of their own group”. They felt distanced from the doctors. Conversely, doctors reported far fewer problems with interprofessional collaboration.

    Although each felt working together was important, each professional group constructed collaboration in different ways. This suggests that there are “competing notions of what constitutes collaborative work” and “that policies aimed to promote it need to recognise these different understandings”.

    Professional perceptions of collaboration in Norway ▸

    A study from Norway comes up with very similar findings, looking particularly at doctor-nurse relationships, and has more to say about the reasons why doctors and nurses understand collaborative working in such different ways.

    The paper draws on a survey of 551 doctors and 2050 nurses on medical and surgical wards in 15 Norwegian hospitals. Among the questions asked were the following:

    • How satisfied are you with your job?

    • Do you experience unrealistic expectations from other professions?

    • Do you ever feel down because of criticism from doctors/nurses?

    • Do all have common aims for the patients?

    • Would you say cooperation worked well?

    The questions also asked for views about the perceived competence of doctors and nurses.

    As in the study by Reeves and Lewin, doctors were found to be “significantly more satisfied” with collaboration than nurses. The two groups approached the questions very differently. The largest differences between the two professions were on (a) satisfaction with inter-department cooperation (more common among doctors than nurses, (b) being praised for good work (doctors more often than nurses), and (c) considering nurses to be competent (nurses more positive than doctors).

    Doctors’ satisfaction with collaboration depended strongly on a perception that both professions have the same goal and satisfaction is less where this is perceived not to be the case. But nurses were significantly less affected by not seeing all as having the same goal. The authors argue that this is because nursing has defined itself a role separate from medicine that works alongside it, whereas the doctors in the study see nursing as part of their support. While doctors were considered highly competent by both nurses and doctors, many doctors were uncertain about the competence of the nurses. This seems to be related to doctors’ perceptions of the ability of nurses to share information and update them on developments. The fact that only about half the nurses said they discuss patients with other professional groups in the course of a normal day supports the interpretation that nurses may attach less weight to their traditional role as the doctors’ front line observers.

    The paradox that doctors rate nurses lower than nurses rate doctors yet have higher satisfaction levels with collaboration may be explained by understanding that each group has different expectations from collaboration. To doctors, good cooperation means having their therapeutic decisions effectively implemented and being kept informed about their effect. To nurses, cooperation does not only mean communicating medical observations or administering medication, but also being appreciated for their independent contributions to the healing process. To nurses, cooperation relates to workplace relationships as well as tasks.

    The authors conclude that “an understanding of the conceptual asymmetry [in collaboration] is important for change management as well as for the professions themselves if the rhetoric of collaboration is to go beyond mere words”.

    The papers below look at another crucial relationship—that between community groups and the representatives of the health services they use—and the ways in which it is changing.

    Making public consultation more meaningful ▸

    The first paper from a team of Canadian researchers is based on interviews with groups of people who have been active in public participation processes. Its aim was to draw out their views on consultation and how the process can be improved. The researchers held six focus groups in five Canadian provinces. They deliberately sought people who had been active in public participation and were helped by regional health authorities to identify participants.

    A common set of “focus group questions” was used to explore the following topics:

    • General and process-specific experiences with public consultation processes.

    • Citizen impressions of the barriers and facilitators to participation.

    • Depictions of the role that information and information sources play in the consultation process.

    • Perceived effects of public consultation on participant views about policy issues.

    • Impacts of public consultation on decision making.

    • Elements of successful consultation.

    The findings were organised into six themes:

    • The roots of the cynical citizen will be deepened if consultation is seen as “corruptible” or to “mask” hidden agendas.

    • Paying attention to design and process will require politicians and policy makers to think about the following dimensions of consultation: communication; procedural rules; representation; and information.

    • Information is very important. Focus group participants appeared less concerned with the amount and specificity of the information than with seeking assurances that information would be presented honestly in “non-manipulative” ways and with a “sense of ethics”.

    • Consultation processes can have positive effects on participants. Individuals involved in a group participative process to explore a difficult issue “will ultimately come to a more informed judgement about an issue”. They also felt that, if consensus is a goal of the process, it should be defined and they suggest that it be defined not as “everybody agrees” but that “everybody’s comfortable with a decision”.

    • Public consultations are thought to be “a valuable tool in a democratic society”, but there is an issue of trust and it is felt that “remedial action” is needed to “establish or re-establish trust between citizens and decision-makers”.

    • The participants said they would prefer to see public consultations integrated into existing democratic structures than as a substitute for them. But the authors note that there is a barrier to achieving this: “the bulk of health system decision-making, for which public consultations are routinely sought, occurs at the regional level whereas the electoral accountability for health care decisions resides at the provincial level”.

    Participants offered the following suggestions on how to improve consultation processes.

    • They would like to see a clearer purpose expressed and for the process to have deliberately built in accountability mechanisms. They would like to see a clear link between the opinions collected and the decisions made.

    • The same information should be available to decision makers and to the public and it should be presented “clearly, honestly and with integrity”. Considerable effort is needed to improve information to ensure participants are comfortable with the topic and to build the confidence they need for meaningful participation and, ultimately, to value and include the views that participants bring with them.

    There are some tricky issues to think through if participatory processes are to improve radically. A better understanding of what information the public can trust is needed and a more open acknowledgement of the fears faced by policymakers and decision makers in engaging the public.

    Rise of the consumer health lobby as a new political movement in the UK ▸

    The first of two papers in a special issue of Sociology of Health and Illness draws on a research project to map the characteristics and activities of consumer health groups in the UK and their increased involvement in the policy process.

    The researchers were interested in internal structures, history, and core activities, as well as the contact each has with other groups. 123 groups returned a questionnaire and these collectives can be placed under one of the following three headings:

    • condition based groups;

    • population based groups (focusing, for example, on children or the elderly); and

    • formal alliance organisations linked by a shared interest (for example, the Patient’s Forum which is an alliance of 81 different groups).

    In addition, researchers interviewed 39 leaders and, in the final stages of the research, conducted interviews with 31 “policy actors” including civil servants, academics, lobbyists and others.

    Health consumer groups in the UK share some common characteristics. All are focused on the NHS and none on private health care; 90% are membership groups. Most prioritise similar activities including “providing information and advice”, “facilitating support services about a condition”, and “campaigning and lobbying on policy and services”. Some groups were formed in the 19th century, more were formed after the Second World War, but two thirds were formed after 1981. More mental health groups had been established before 1981 (48%) than maternity and childbirth groups (40%), arthritis (28%), heart and circulatory disease (23%), or cancer groups (22%). Although population based groups were more likely to have been formed before 1981, 68% of condition specific groups and 73% of formal alliance groups were not.

    Population and condition groups emerge in the same fields. After losing her baby and attributing this to technological intervention, Prunella Briance founded the National Childbirth Association in the 1950s. Renamed the National Childbirth Trust in 1961, it has 45 000 members and 450 local branches. The Association for Improvements in the Maternity Services was formed in 1960 and, although it was initially set up to improve access to services, it has developed into a more radical group committed to increasing women’s control over childbirth. A lack of support triggered the formation of groups such as the Twins and Multiple Births Association … and the Still Birth and Neo Natal Death Society.

    Despite some differences in policies and tactics, groups in the maternity sector now actively collaborate. They have similar perceptions: they sympathise with the feminist movement and have struggled against the medicalisation of childbirth. They tend to respect each other’s niche areas.

    There is collaboration in other areas—for example, the Long Term Medical Conditions alliance is a collective of 112 groups. Alliances provide opportunities for learning how to influence the policy process and establish access to policy networks; resources can also be shared.

    What leads people to form groups? It could be one or all of a few things: anger about what happened to them; the perception that a condition is not well understood; a belief that service provision is inadequate; and a deep concern about the lack of information available for patients. Groups that form alliances seek to influence policy and health consumer groups now have greater access to and influence on the policy process than in the past. Whether this inclusion will change the nature of organisations is open to question. It may simply be that inclusion in the process leads to incorporation—that is, health consumer groups could simply become actors in a process that provides enhanced legitimacy to governments as they pursue their own larger agenda. It could also be argued that the health consumer movement is actually a collection of disparate interests and that involvement in the policy process might exacerbate differences.

    There are insiders and outsiders; some issues are on the agenda and others are not. Leaders may find themselves separated from grass roots activists with other agendas. Despite these caveats, the authors conclude that “health care politics have been significantly changed by the presence of a new set of actors within the health policy process”.

    Challenges to employing the voice of Alzheimer’s sufferers to promote better understanding of the disease ▸

    This paper from the US states that “when the Alzheimer’s Association (AA) was formed, its intention was to direct attention to the condition and to garner financial support for research abetting a solution to Alzheimer’s disease (AD). The movement successfully framed itself through the positioning of AD as a significant social—not simply individual—problem, transforming senility from a private family matter to a medical epidemic demanding public concern.” However, attempts to give voice to the perspective of people with AD have encountered considerable obstacles. Instead, proxy views are offered by carers which, the author believes, reinforces the “unfortunate notion that people with dementia are different”. Compared with the health social movements of other diseases, the Alzheimer’s movement has been slow in identifying and exploiting public spokespersons and, for several reasons, it is almost impossible for sufferers to advocate for themselves or lead the organisation that represents them.

    This paper is a study of the challenges in incorporating the voice of those with AD in the AA and draws on six individual interviews and two focus group discussions with 12 people as well as a further 12 interviews with AA staff.

    Although respondents with AD highlighted “a resounding willingness to become more visible in the dialogue surrounding dementia”, there are a variety of obstacles—not least the nature of the condition itself. There are also organisational barriers—that the culture of the AA is to raise money and support research rather than promote dialogue on quality of life issues for sufferers which tend to be of more concern to those with AD.

    Fundraising is a major part of AA activities and, as with childhood conditions, depictions of pathetic victims are essential tools for fundraising. The interim President of the AA told the researcher: “The more you emphasise that people have rich lives and should have, think about the flip-side of that: ‘Oh, Alzheimer’s isn’t so bad’.” The AA would lose some political pressure.

    Those with AD depend on others to act on their behalf, but in discussion there was a suggestion that this contributed to a couple of important misunderstandings about the disease: that it only affects old people and that its onset is sudden rather than gradual. A benevolent paternalism can be frustrating: some families “might not want their loved ones to be spokespeople so as to prevent them from being publicly humiliated”. Another barrier to inclusion may be a cohort effect “where seniors are less comfortable speaking about personal experiences to their doctors”. The increased sophistication of diagnostic technologies makes earlier identification of problems possible. However, “yielding vast numbers of people far earlier in the discourse process has not had the anticipated effect of bringing to the forefront personal accounts of the condition”.

    The author believes this is because the AA and the movement on which it is based has a culture of elevating certain goals (a cure, fundraising for research, a support for scientific investment) over others (such as quality of life) and faces a major challenge in involving its members or risks losing some grass roots support.

    Challenges for those making proxy choices for dementia sufferers ▸

    The final paper explores the suggestion that “an imaginary dialogue with a former self, constructed by intimate others in the present, can be a vehicle for the former self’s agency even when the current self is no longer competent”. It explores the issue of dementia.

    “When persons suffer from conditions which limit their decision-making capacities, their privilege as autonomous decision makers is suspended”. “If an advance doctrine has been written, proxies are guided by the wishes expressed within them. Where no doctrine exists, the substitute decision standard will be used. Here the proxy infers from personal knowledge of the patients … and decides accordingly, setting aside his/her own view.” But, the author asks: “is solidarity enough to qualify intimate others as interpreters of patient agency?”

    The approach favoured by the paper is to encourage a dialogue between present and future selves which is “most morally convincing when closest in time to real dialogues between the patient and the proxy”. Thus, in the case of steadily advancing dementia, the patient can anticipate experiences and participate more fully in decision making.

    “But what does a proxy decision maker do when faced with a clearly expressed prior preference that compromises the current interests of the patient?” The author’s mother has dementia. She had nursed her own mother when she was younger and said if she ever became so demanding she should be placed in a home. When this became the case and she moved, she asked every day for four months why she was there. After that time, she moved back home.

    “What do we make of her former enduring preference (indeed, insistence) that she be placed in a home? To offer her the home support she later wanted, must we abandon respect for former values?”

    The paper argues that there is greater continuity between past competent selves and future selves than is generally assumed. She calls for a “more blended approach to proxy decision making”. However, she acknowledges that an approach emphasising early decision making is no panacea. In the end, “practical wisdom and creative judgement on a case-by-case basis may be the best we can do”.

    View Abstract

    Request permissions

    If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.