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As a clinical haematology nurse specialist I review patients in the out – patient setting alongside consultant haematologists. The majority of pat

In essence, patient “self-management” in relation to their health, encompasses a patient’s ability to handle an illness experience, to cope with undergoing treatment or make suitable lifestyle changes (Mulligan 2009). The concept was introduced to the health field by Kate Lorig who reached conclusions patients’ health and subsequently health service costs connected to them being an inpatient can be reduced by encouraging self-management (Lorig 2001).

These ideas are utilized in the generic long-term conditions model which emphasizes patients are not happy to be in hospital unless it is completely essential (DOH 2010), (Appendix 1). Effective self-management is also widely thought to reduce the likelihood of hospital admission, and many argue patients prefer to be given access to the information necessary to facilitate a respected voice in decision making processes (Gibson et al 2004, Newman et al 2004).

Linked to self-management is also the concept of self care – described as a requirement for success in controlling many chronic illnesses including diabetes (Berg 2007), and asthma (Cortes 2004). Self care is also described holistically as essential to the well-being of those with chronic illnesses with continuing care needs in nursing homes (Bickerstaff et al 2003), in the community, (Sharkey 2005), in hospital, intermediate, or rehabilitative settings (Singleton 2000, & Coleman 2004).

Conversely, low self-esteem, low health literacy, and/or deprivation are barriers to utilization of self-management strategies (Williams et al 2011). Those most likely to participate in self-management are young, middle-class females (Coben 2005). Whilst those lacking literacy skills may not manage as well and family care-giving actions differ between ethnic and socio-economic groups (Larsen 2009). People who suffer a disproportionally high prevalence rate for chronic conditions are those with learning disabilities (Presho 2009) and ability to comprehend and enact management regimes might affect the efficacy of education initiatives with this population.

The Expert Patient Program, a 6 week, lay-led course teaching self-care, is a prominent initiative expected to be more cost effective than usual care (NSF 2010, Richardson 2007). Although the EPP’s effectiveness to enable improvements in patient’s self management ability regarding physical symptoms has been disputed (Gately 2007). Perhaps this is due to complex combinations of assorted medications, lifestyle adaptations, and bothersome side effects which are implicated as adversely affecting patient’s perseverance with management plans (Barlow 2002, Touchette 2008).

GP business care plans developed in the UK propose introducing courses using self-management handbooks could reduce expenditure on asthma management (Appendix 4). Yet Cortes argues such asthma education programs neglect specific needs of older people identified as price of medication, problems undertaking management plans, poor quality of life, and troubles accessing health care (Cortes 2004). These opinions contradict the development of Lorig’s ideas that self-management enables the best quality of life, but since healthcare information has the greatest effects on outcomes when it is goal orientated (Bodenheimer 2002, Barlow 2002, Kralik et al 2004), maybe older people’s self management goals need more attention.

Concurrent with increased longevity and lifestyle factors like poor diet, obesity and related chronic disease is predicted to increase greatly in prevalence (Wang 2010, Mulligan 2009, Armstrong 2005, and Keen 2010). Diabetes has well recognized links between weight and illness progression (Patel 2003), and has also recently been blamed for advancing cognitive deterioration through vascular dementia (Luchsinger 2001). Therefore tightening diabetes control in early stages may vastly improve future health as illness limits mobility, and dementia/retinopathy hamper potential to access self-care resources (Sinclair 2000).

Notably due to widespread sensitivity over weight, healthcare professionals should be non-judgmental towards patients with chronic conditions, especially considering psychological and psychosocial implications connected to adjustment to an illness, including guilt, fear, stigma, confidence loss, and isolation (Presho 2008).

It was observed during a TIDE (Type 1 Diabetes Education) diabetes specialist nurse led session that those with busy manual working lives find it difficult to take time to self-manage by adjusting insulin to activity levels or establishing a routine of carbohydrate counting and insulin adjustment. Others find calculations following the DAFNE (Dose Adjustment for Normal Eating) structure, hard to understand. Several patients who had suffered previous traumatic hypoglycemic episodes felt anxious about reducing insulin intake, and reported differences in advice from GP’s, and nurses as well as confusion over new insulin analogues and devices. This indicates understanding patients as unique individuals, timing and convenience of interventions are important.

Furthermore providing clear, consistent advice appeared allied to development of positive attitudes towards nurses’ education interventions. Studies suggest structured education in type 1 diabetes has improved patients’ maintenance of glucose targets and a reduction in occurrences of hypoglycemia changed people’s attitudes to education (Heller 2009). Also those with greater understanding of and confidence in adjusting insulin appropriate to activity, with less anxiety over following a fixed regime to avoid hypoglycemia achieve top self-management in type 1 diabetes (Whitehead 2008).

On a stroke rehabilitation unit, patients with multiple conditions, particularly diabetes, asthma, and Parkinson’s had restricted motor function. Yet nurses could provide encouragement for patients to express concerns, to relieve some psychological distress or help empower patients with the required self-confidence to make decisions (Costello 2009). Patients expressed difficulty with waiting for physios to engage in movement improving circulation, but self-administered some medication and carers views and choices underpinned care planning as recommended in Essence of Care benchmarks, via regular carers group meetings (DOH 2010).

Chronic disease is the leading cause of death worldwide (Larsen 2005) and literature establishes dependent people’s needs are equality, rehabilitation, and independence. Furthermore security and dignity are important to older people’s mental health (Presho 2008). On a local scale Manchester’s operational plan illustrates emergency admissions for asthma is greatest in the North East and prevention is being addressed with annual health checks provision improving recently. Whilst the national continuing care framework commenced in 2007 promises to ensure national equity of access to NHS funding for continuing care (NHS 2010).

Significantly “Our Health and Wellbeing Today” (DOH 2010) suggests national morbidity is greatest from circulatory disease, which is particularly high in lower socioeconomic groups. These groups also have the greatest prevalence of anxiety and depression and have increased likelihood of having chronic conditions such as diabetes, which has led enquiring researchers to suggest depression as a factor that precipitates and perpetuates chronic conditions (Chapman 2005). Socioeconomics is also reported to determine medication adherence in asthmatics (Kaptain 2009). Victim blame might occur if expectations patients follow structured management programs ignore social contexts of illnesses, (Lindsay 2009) so emphasis should be on developing realistic goals.

The king’s fund review of self-management highlights that patients’ perceptions of self management differ according to how they receive a diagnosis, and these attitudes can change over time. Differentiation was noted between diagnosis of asthma or diabetes, where it was felt greater clarity existed, than of Parkinson’s disease for which diagnosis takes longer (Coben 2005). Disclosing a medical condition could also have implications for patients’ quality of life, and a study of anecdotes from Parkinson’s patients demonstrated those with confidence to disclose their illness subsequently achieved greater measured anxiety reduction (Presho 2008). Notably research shows patients fret significantly about psychological consequences of physical disability (Miller 2006).

Concealment could be due to perceived stigma and misconceptions about the disease or depression about associated decline, physical disability and being a burden (Moore & Knowles 2006). Alternatively challenges of symptom management such as sleeping problems and fatigue, sexual dysfunction and cognitive impairment might lead to depression (Schrag, Jahanshahi, & Quinn, 2001; Schreurs, De Ridder, & Bensing, 2000). Similarly emotional responses to asthma can impact upon attitudes towards taking prevention medication which enables control, and alongside non-adherence patient stress increases leading to depression, anxiety or inability to cope (Kaptain 2009).

Interventions aimed at managing pre-diabetes and mild asthma, that miss-managed, could contribute to the development of diabetes mellitus and chronic airway disease (Murphy 2007), are well developed and promoted by the charities Diabetes and Asthma UK (Appendix 3). It is especially important to promote good control since poor control negatively impacts on the affected person’s quality of life and also their families (NICE 2008). Also individuals reportedly favor self-management because controlling their health affords greater sense of autonomy (Corben 2005).

The EPP has incentives of providing greater knowledge about treatment decisions with the underlying expectancy patients have authentic understanding of their own conditions, and greater recognition of patient’s roles should give them self-confidence to protect future health (DOH 2001).

Illness progression might be reduced by lifestyle changes, therefore nurses have a role in promoting patients’ independence, well-being, and in encouraging active ageing (NMC 2009).

In 2005 the Kings fund report highlighted that major challenges to promoting self management were; developing professionals’ supportive skills, improving services and information available to facilitate patients’ self-management, and becoming more flexible to fit compatibly around patients other commitments (Rosen 2005).

Dorothea Orem created a comprehensive model of nursing which can be applied to individuals to assess level of self-care ability (Appendix 2). Orem conceptualizes nursing as “doing for” a disabled person with a self-care deficit, or assisting them/family to do for their selves (Orem 2003). Further to this Orem formulated three systems of nursing to apply, of which partially compensatory nursing seems appropriate for stroke patients, whilst a supportive-educative role suits structured education sessions (i.e. TIDE).

The effects of an education intervention delivering the DESMOND program (Appendix 5) for patients with type 2 diabetes to newly diagnosed patients over a period of 6 hours measuring cost effectiveness and quality adjusted years are reported by a randomized trial to have positive effects particularly on reducing patients weight and the amount they smoke (Gillett 2010). Issues of self-efficacy and self-management prominent features of the DESMOND that have been found to build patients confidence (Davies 2008, Skinner 2006) are key to developing a sense of well being in rehabilitation (Presho 2008). Nevertheless, concerns nurses might have include doubts about the patients being experts after what is actually a relatively short training period (Lindsay 2009).

Moreover, there could be internal conflicts for nurses between applying structural protocols (i.e.) or professional ethics, and accepting a patient’s wish to continue a harmful behavior or health neglect. Farrell argued in 2004, active teaching on conditions and problem-solving to address medical issues better promotes self-efficacy than passivity (Farrell 2004). Yet it is important patients are equipped with enough knowledge to act as concordant partners and are supported with taking medications (Murphy 2007) (Appendix 7). Involving relatives in demonstrations of using metered dose inhalers is helpful with dependent asthmatic elders because direct patient observation by nurses supervising medication is often impossible once they have returned from hospital, (Schlenk 2004).

Ability to encourage self-management requires nurses to “listen”, and “respond” to the “concerns and preferences” of people in their care (NMC Code), as well as “sharing in a way people can understand, the information they want or need to know about their health” (NMC code). This may include providing written supplementation to verbal information such as education leaflets or management diaries, and allowing adequate time for adjustment and decision making. Patient’s whose physical function has deteriorated significantly and continues to decline may be in a too highly dependent illness phase to benefit from strategies to return to normal function (Larsen 2009).

Cochrane authors conclude evidence showing contracts improve patient adherence to health-promotion in adult asthma studies is limited (Bosch-Capblanch et al 2007), which suggests patients’ intentions when agreeing to follow advice is unreliable for predicting management outcomes. Patient self-reports are a simpler method of gleaning non-adherence information, are inexpensive, and possible in most settings (Schlenk 2004 cited by Ruppar 2008).

Research observes patients with Parkinson’s disease using Alexander Technique had a reduction in depression and improved capacity to manage their disability (Clark 2003). “The essence of care is about getting to know and value people as individuals”, (NMC Guidance for the care of Older People 2009) and nurses can recognize and respect peoples’ role in their own care. Evidence also suggests motivational interviewing can reduce depressive attitudes towards illness situations and to encourage positive action to improve health outcomes, therefore perhaps GP’s and practice nurses should increase these services (Home and Carr 2009).

Nurses can arrange social workers to speak to the patient, to engage with their family, find out their needs, compile appropriate packages of care and request doctors provide explanations of the mechanisms causing a stroke in dedicated wards which usually provide speech and language therapy, occupational, and physiotherapy. Dedicated stroke wards are shown by studies to improve outcomes after two years of patients who were independent prior to their stroke vis-à-vis ADL’s without lengthening stay (Glader 2001 and Cochrane Stroke Unit Trialists’ Collaboration 2007).

It can be a stressful time for patients and family having to make continuing care decisions; therefore patients might seek support from others who have been in their situation (Help the Aged 2009). Gathering information allows patients to manage their illness alongside doctors, and sharing plans with friends and family, explaining their importance, can help them to follow them, there are purportedly around 6 million carers in the UK combining caring with paid employment, saving £57 billion a year in care costs (Campling 2006, & Costello 2009).

Not every patient has supportive family members so professionals’ and expert patients, and charities can be significant. Especially interventions tailored to marginalized patients needs such as X-PERT education for type 2 diabetics undertaken in Urdu (Diabetes UK 2009). In critical phases of illness, which may be the point where a patients continuing care needs begin, patients’ relatives’ main needs are for information, support and proximity (Henneman 2002). In the case of Parkinson’s disease conveying to patients families the hope that there are strategies for managing the condition, particularly in early stages, might reduce fear, negative impact and sense of stigma (Moore & Knowles 2006).

Managing pain and discomfort is often considered a challenging aspect of caring, and psychological aspects also cause pain. Total illness effects make it important for patients to have supportive family members to listen to them to find out potential causes/remedies (Costello 2009). Practitioners should be sensitive to needs of carers as well as patients, and evidence suggests nurse-led stroke carer sessions, responding to individuals concerns would be helpful (Smith 2004).

A study using the stress and coping model (Lazarus and Folkman) to identify a relationship between sleep deprivation and depression in family care-givers found that individuals self-reports underestimated their problems (Carter 2003). People may feel that because they know their relative they are capable of best comprehending and providing for them, and this could lead to guilt about accepting assistance with care (Nolan 2000). Research into respite care suggests family carers expressed needs for information, skills training or education and emotional support (Hanson 2001). To decrease feelings of powerlessness and support independence for those with chronic conditions Larsen proposes five interventions to recommend to carers (Appendix 6) (Larsen 2009).

Peak-flow monitoring, allergen avoidance, and the Buteyko method of symptoms control for mild asthma, based on correctly dosing steroids to maintain safe asthma control are found to be effective (McKeown 2003), as are diet, exercise, supplements and anti-diabetic medication as preventative strategies for type 2 diabetes, reducing heart attacks, microvascular disease, and death (Patel 2003). Though some studies suggest effectiveness reduces 1-3 months post intervention (Siminerio 2007).

Subsequently insight into self-management adherence remains complex and under-researched, but supports identifying barriers to adherence and taking action to remove these (Touchette 2008). In liberating the NHS the symbiosis of adult social care, carers, and the NHS is recognized and promises are made to improve the convenience of services to patients (DOH 2010).

To reiterate, according to the UK governments policy overall evidence suggests self-care results in beneficial outcomes and better service utilization, but this is largely based on primary studies as systematic reviews are reportedly too time consuming (DOH 2005-7). Systematic reviews also indicate clinical benefits for diabetic and hypertensive patients (Jordon and Osborne 2007). Although psychological benefits to patients appear widely well recognized (Lindsay 2009), patient self-determination requires more than medical management, (Greenhalgh 2009). Contrary to commissioners intentions studies show attendance at health services does not necessarily decrease following education sessions, although this may not indicate poor management as it could reflect success of techniques teaching patients confidence to converse with clinicians (Griffiths 2007).

Since GP’s are also accused of stalling EPP progress, dubious about its efficacy and under referring patients (Jordon & Osborne 2007) it follows that nurses might take a key role in involving patients. The basis behind the EPP being best practice are aims to increase patient beliefs in health services efficacy, personal confidence, and ability to self manage (DOH 2010), therefore nurses are following policy implementing programs RCT’s suggest achieve these outcomes (DOH 2005-7). Finally research highlights the importance of having clearer, comprehensive, shared definitions of self-management between health disciplines to reduce patient confusion and so professionals collaborate better (Godfrey 2011).

References

Armstrong, D. (2005) Chronic Illness: Epidemiological or social explosion, Chronic Illness, 1: 26-7

Barlow, J. H., Sturt, J., and Henshaw, H. (2002) Self-management interventions for people with chronic conditions in primary care: arthritis, asthma & diabetes: Health Education Journal; Vol 61, issue 4, p 365-78

Barlow, J., Wright, C., Sheasby, J., Turner, A. and Hainsworth, J. (2002) Self-management approaches for people with chronic conditions: a review, Patient Education and Counseling, Vol 48, p 177-87

Berg, G.D., Wadhwa, S. (2007) Health Services outcomes for diabetes disease management program for the elderly: Disease Management; Volume 10, p 226-234

Bickerstaff, K. A., Grasser, C. M., & McCabe, B. (2003) How elderly nursing home residents transcend losses of later life: Holistic Nursing Practice; Vol 17; Issue 3, p 159-165

Bodenheimer, T., Lorig, K., Holman, H., & Grumbach, K. (2002) Patient Self-management of Chronic Disease in Primary Care: The Journal of the American Medical Association; Vol 288, Issue 19, p 2469-2475

Bosch Capblanch X, Abba K, Prictor M, Garner P (2007) Contracts between patients and healthcare practitioners for improving patients’ adherence to treatment, prevention and health promotion activities. Cochrane Database of Systematic Reviews (2): Art. No.: CD004808

BTS/SIGN (2008) British Guideline on the Management of Asthma: British Thoracic Society (21.02.11) http://www.britthoracic.org.uk/Portals/0/Clinical%20Information/Asthma/Guidelines/sign101%20revised%20June%2009.pdf

Carter, P. (2003) Family Caregivers’ Sleep Loss and Depression Over Time: Cancer Nursing; Volume 26 – Issue 4 – p 253-259

Campling, F., and Sharpe, M. (2006) Living with a long-term illness: Oxford University Press

Chapman, D. P., Perry, G. S, & Strine, T. A., (2005) The Vital Link Between Chronic Disease & Depressive Disorders: Preventing Chronic Disease, Public Health research, practice and policy; Volume 2, No 1

Clark, Chambers, C. (2003) Parkinson’s disease: Self-Care Measures You Can Take: American Holistic Nurses Guide to Common Chronic Conditions: John Wiley & Sons; New Jersey

Cochrane (2011) Organised inpatient (stroke unit) care for stroke: Stroke Unit Trialists’ Collaboration; The Cochrane Database of Systematic Reviews, Issue 3 http://www2.cochrane.org/reviews/en/ab000197.html

Corben, S., and Rosen, R. (2005) Self-management for Long-term Conditions, Patients perspectives of the way ahead; The Kings’ Fund: UK

Cortes, T., Lee, A., Boal, J., Mion, L., Butler, A. (2004) Using focus groups to identify asthma self care and education issues for elderly urban-dwelling minority individuals: Journal of Applied Nursing Research; Volume 17, Issue 3, p 207-212

Costello, J. (2009) Caring for someone with a Long-term Illness: Manchester University Press; UK

Davies. M. J., Heller, S., Skinner, T. C., Campbell, M. J., Carey, M. E., Cradock, S., Dallosso, H. M., Daly, H. Doherty, Y. Eaton, S. Fox, C., Oliver, L., Rantell, K., Rayman, G., Khunti, K. (2008) Effectiveness of the diabetes education and self management for ongoing and newly diagnosed (DESMOND) programme for people with newly diagnosed type 2 diabetes: cluster randomised controlled trial: British Medical Journal, Volume 336, No 7642

DOH (2010) BENCHMARKS FOR THE FUNDAMENTAL ASPECTS OF CARE: Benchmarks for Self Care; Essence of Care 2010 (Access 02.03.11) http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_119968.pdf

DOH (2010) Equity and Excellence: Liberating the NHS; Her Majesty’s Stationary Office, UK

DOH. (2010) Generic Long Term Conditions Model; (Accessed online 14/02/2011) http://www.dh.gov.uk/en/Healthcare/Longtermconditions/DH_120915

DOH (2005-7) RESEARCH EVIDENCE ON THE EFFECTIVENESS OF SELF CARE SUPPORT http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_081251.pdf

DOH. (2010) Self Care Local Business Case Tool User Guide http://selfmanagement.co.uk/self-care-resources (Accessed Online 14/02/2011)

DOH. (2010) Making the case for self care education: http://selfmanagement.co.uk/self-care-resources

DOH (2001) The expert patient: a new approach to chronic disease management 21st century

Gately, A., Rodgers, C., & Sanders, A. (2007) Re-thinking the relationship between long term condition self-management education and the utilization of health services: Social science and Medicine; Volume 65, p 934-945

Farrell, K., Wicks, M, & Martin, J. C. (2004) Chronic Disease Self-Management Improved with Enhanced Self-Efficacy: Journal of Clinical Nursing Research; Volume 13, No 4, p 289-308 http://cnr.sagepub.com/content/13/4/289.full.pdf+html (04.04.11)

Gibson PG, Powell. H., Coughlan J., Wilson A. J., Abramson M., Haywood, P., Bauman, A, Hensley MJ, Walters, E. H. (2004) Self-management education and regular practitioner review for adults with asthma: The Cochrane Library Issue 2. Chichester: John Wiley & Sons.

Gillet M, Dallosso HM et al (2010) Delivering the diabetes education and self management for ongoing and newly diagnosed (DESMOND) programme for people with newly diagnosed type 2 diabetes: cost effectiveness analysis; British Medical Journal, Issue 341, p 4093

Glader, E. L., Stegmayr, E., Johansson, L., & Wester, P. O. (2001) Differences in Long-Term Outcome Between Patients Treated in Stroke Units and in General Wards: Journal of Stroke; Volume 32, p 2124-2130

Godfrey, C. M., Harrison, C. M., Lysaght , R., lamb, M. (2011) Care of self – care by other – care of other: the meaning of self-care from research, practice, policy and industry perspectives: International Journal of Evidence Based Healthcare; Volume 9, Issue 1, p 3-2

Greenhalgh, T. (2007) Chronic Illness, beyond the expert patient: British Medical Journal; Vol 338, p629-31

Griffiths, C., Foster, G., Ramsay, J., Eldridge, S., & Taylor, S. (2007) How effective are expert patient (lay led) education programs for chronic disease? British Medical Journal: Volume 334, p 1254-1256

Hanson, E. J., Tetley, J., & Clarke, A. (2001) Respite care for frail older people and their family carers: concept analysis and user focus group findings of a pan-European nursing research project: Journal of Advanced Nursing; Volume 30, Issue 6, p1396-1407

Heller, S., Shearer, A. Bagust, D., Sanderson, A, and Roberts, S. (2004) Cost-effectiveness of flexible intensive insulin management to enable dietary freedom in people with Type 1 diabetes in the UK; Journal of Diabetic Medicine, issue 21, 460-467

Heller, R. S. (2009) Structured education in type 1 diabetes: British Journal of Diabetes & Vascular Disease; Volume 9, no 6, p 269-272 http://dvd.sagepub.com/content/9/6/269.full.pdf+html (02.03.11)

Help the Aged (2009) Common Assessment Framework for Adults – proposals to improve information sharing around multi-disciplinary assessment and care planning

Jordon, J., & Osborn, R. (2007) Chronic disease self management education programs: Challenges ahead; Medical Journal of Australia, Volume 182, Issue 2, p 84-87

Keen, A., & Hillson R. (2010) Six years on: delivering the Diabetes National Service Framework; Parliamentary Under State Secretary for health & National Clinical Director for Diabetes; DOH (19.02.11) http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_112511.pdf

Kaptein, A. A., Klok, T., Moss-Morris, R., Brand, L. P. B. (2010) Current Opinion in Allergy and Clinical Immunology: No 10, p 194-199

Kennedy, A., Reeves, D., et al (2007) The effectiveness and cost effectiveness of a national lay led self care support programme for patients with long-term conditions: a pragmatic randomised control trial J. Epidemiol. Community Health Issue 61; pages 254-261

Larsen, P., & Lubkin, I. M. (2009) Chronic Illness: Impact and Intervention; 7th ed, Jones & Bartlett, Canada

Lindsay, S., & Virjhoef, H. J. M. (2009) A sociological focus on expert patients: Health Sociology Review; Vol 18, Issue 2, p 139-144 http://www.atypon-link.com/EMP/doi/pdf/10.5555/hesr.18.2.139?cookieSet=1

Luchsinger, J. A., Tang, M., X., Stern, Y., Shea, S., & Mayeux, R. (2001) Diabetes Mellitus and Risk of Alzheimer’s Disease and Dementia with Stroke in a Multiethnic Cohort: American Journal of Epidemiology; Volume 154, No 7, p 635-641 http://aje.oxfordjournals.org/content/154/7/635.full.pdf+html

Michie S, Miles J, Weinmann J (2003). ‘Patient centeredness in chronic conditions: what is it and does it matter?’ Patient Education and Counseling, vol 51, pp 197-206

Miller, N. (2000) Hard to swallow: Dysphagia in Parkinson’s disease; Journal of Age and Ageing; Volume 35, issue 6, pages 614-618

Moore, S., & Knowles, S. (2006) Beliefs and Knowledge about Parkinson’s Disease: E-Journal of Applied Psychology: Clinical and Social Issues, Volume 2, Issue 1, p 15-21

Mulligan, K., Steed, L., Newman, S. (2009) Chronic Physical Illness: Self-Management and Behavioral Interventions; Open University Press, England

Murphy, A. (2007) Asthma in Focus: Royal Pharmaceutical Society of Great Britain; Cornwall

Newman S, Steed L, Mulligan K (2004) Self-management interventions for chronic illness Lancet, volume 364, pp 1523-37

NICE (2008) Inhaled corticosteroids for the treatment of chronic asthma in adults and in children aged 12 years and over; http://www.nice.org.uk/nicemedia/live/11945/40099/40099.pdf

NHS (2004) NHS Continuing Care Report to the House of Commons Health Committee: Stationary Office; http://www.parliament.the-stationery-office.co.uk/pa/cm200405/cmselect/cmhealth/399/399i.pdf (27.03.11)

Nolan, M., & Delasegga, C. (2000) `I really feel I’ve let him down’: supporting family carers during long-term care placement for elders; Journal of Advanced Nursing, Volume 31, Issue 4 p 759-767

Orem., D. (2003) Self Care Theory in Nursing: Selected papers of Orem Springer Publishing Company

Patel, A. (2003) Diabetes in Focus: Understanding inevitably leads to hope; Pharmaceutical Press, UK

Rosen, R., Asaria, P., & Dixon, A. (2007) Improving Chronic Disease Management, an Anglo-American Exchange: The commonwealth Fund Report; The Kings Fund

Rosen, R., & Corben, S. (2005) Self- Management for Long Term Conditions, Patients Perspectives on the way ahead: Managing Long Term Conditions; Working report, Kings Fund

Ruppar, T. M., Conn, V. S., & Russell, C. L. (2008) Medication adherence interventions for older adults: literature review: Journal of Research and Theory for Nursing Practice, Volume 22, Issue 2, p 114-147

Schlenk E. Dunbar, J., & Engberg, S. (2004) Medication non-adherence among older adults: a review of strategies and interventions for improvement: Journal of Gerontological Nursing, Volume 30, Issue 2, p 46

Schrag, A., Jahanshahi, M., & Quinn, N. P. (2001) What contributes to depression in Parkinson’s disease? Journal of Psychological Medicine, Volume 3, Issue 1, p 65-73

Schreurs, K. M. G., De Ridder, D. T. D., & Bensing, J. M. (2000) A one year study of coping, social support and quality of life on Parkinson’s disease: Journal of Psychology & Health; Volume 15, p 109

Sharkey, J., Ory, M., & Browne, B. (2005) Determinants of self-management strategies to reduce out-of-pocket prescription medication expense in homebound older people: Journal of the American Geriatrics Society; Vol 53, Issue 4, p 666-674

Siminerio, L. M. (2007) Is the Diabetes Educator Our Next Endangered Species? Lessons From the American Bald Eagle: Diabetes Spectrum; Volume 20, no 4, p 197-198

Sinclair, A., J., Girling, A. J., & Bayer, A., J. (2000) Cognitive dysfunction in older subjects with diabetes mellitus: impact on diabetes self-

 

ients have chronic and incurable haematological conditions; many of the patients have a variety of malignant and non-malignant conditions, which require periods of cytoreductive therapy. The case load is increasing due to patients living longer as discussed by van Olman et al (2011) especially with developments in treatment modalities. From my personal experiences seeing follow up patients in clinic, patients often vocally complain in private that they have inconsistent experiences regarding medical clinical consultations. Patients have expressed that they have had too many clinicians involved in their care journey. Lots of patients would rather be seen by fewer healthcare professionals, thereby improving the continuity and quality of care and communication.

My rationale is to identify patient experience and satisfaction from nurse led interaction in a face to face follow up consultation. This will provide evidence needed in order to influence the development and implement a nurse led follow-up clinic to improve and enhance patient experience and haematology service.

BACKGROUND

The Primary Care Act of (DoH 1997) influenced the development of nurse led pilot schemes in primary care (Moore 1999) and (Lewis 2001). Nurse led clinics have continued to expand for a variety of needs and challenges, be it the European working directive , to reduce junior doctors working, gaps in practice, locally driven, a cost effective way for patients with stable non-complex needs to be monitored and reviewed.

National strategic drivers, Making a Difference (DoH 1999), NHS Moderation Agency (DoH 2004), Cancer Plan (DoH 2000), the White Paper Equity and Excellence: Liberating the NHS (DoH 2012) ) and the Excellence in Cancer Nursing (DoH 2012) supports the development of nurse led services, especially as the evidence now strongly points towards a comparable service provided by medical clinicians demonstrated in a quick guide for commissioners by the National Prescribing Centre (2010).

In the realm of cancer care nurse led clinics the research from Corner (2003), Wells et al (2008), Cox et al (2006), Moore et al (2006) Wilkinson and Sloan (2009) and Krishnasamy et al (2007) has demonstrated successful nurse led clinics. Certainly the advantage of non-medical prescribing has influenced the development of nurse led clinic for patients having ease of access to medications (Extending Independent Nurse Prescribing within the NHS 2002).

There are two opposing arguments, that the nurse led development is usually locally driven by a clinical nurse specialist (Hutchinson 2011) who identifies a gap in clinical practice that has created a need or a change that cannot be filled by a medical colleague. Hatchett (2006) disagrees and argues that it is National driven targets that have influenced the development. The Nursing Midwifery Council offers no specific professional guidance nurse led services, other than the established code of professional conduct (NMC 2008).

LITERATURE SEARCH

Defining the term nurse led follow up, depends on the specific aims and outcomes of that specific clinic (Hatchett 2008), it will certainly be defined by the academic qualifications and the level of autonomy.

This literature review plans to scrutinise the body of evidence surrounding the subject of nurse led review in clinics, and whether or not they ensure patient safety, valued by patients in the outcomes and provide value for money in the fiscal reducing time in the National Health Service. Searches were conducted using 5 data bases: Internurse, CINAHL, Medline (PubMed), Cochrane and Proquest. (See appendix 1 for table of results) The evidence selected features recent publications and older empirical evidence, that continues to add value to the debate in nurse led clinic development. The key words used in the literature search where nurse led consultation, patient experience and haematology dated from 2000-2012. Hatchett (2006) clearly states that it is difficult to locate supporting literature prior to 2000.

There is considerable debate a strong body of evidence stating and supporting the progressive development of nurse led clinics especially in oncology against the call for ceasing follow up consultations in oncology as they see little value at identifying reoccurrences of tumour (Francken et al 2005, Collins et al 2004, Botteman et al 2003, Rojas et al 2000) and the only significant is to the value gained by the patient is psychological support. Haematological changes of recurrence can be observed in the blood parameters and through specific clinical enquiry at follow up, this is supported by Lewis (2010).

It has been clearly stated, that many nurse clinics have and will continue to develop by initiative nurse usually Clinical Nurse Specialists (CNS) (Hutchison 2011). Nowhere in the literature review was it stated that strategic planning as a top down approach to resolving, addressing a clinical need. Yet in the national agenda, Excellence in nursing (2010), it clearly states that the need for nurse led clinics by CNS’s to be expanded in a growing diverse range of conditions especially chronic conditions with a population living longer. It is interesting over time how the perception of roles is perceived, Hatchett (2006) believes CNS’s where only available to attend and review ward patients and not undertake independent case load monitoring.

Development of nurse led clinics

Nurse led clinics are usually developed by a nurse working single handed (Hatchett 2006) due to staffing costs less than half to function Lewis (2010). Unfortunately none of the research literature reviewed discusses the importance of clinical supervision, peer support of medical leads, case load reviews, I find this somewhat frightening that such a cavalier approach is being adopted and even more so without clinical guidelines and protocols . The NMC (2008) clearly states that a nurse must work with evidence based practice, recognise the limits of competency and most importantly have the knowledge and skills for safe and effective practice when working without direct supervision.

Setting up the service

Within the literature reviewed, only one discussed the role of using clinical algorithm, Mugarza et al (2008), however none of the researchers undertaking nurse led follow up discussed clinical guidelines or competencies supported by their hospital for vicarious liability NMC (2008). Given the compensation culture individual nurses will require to be fully covered for the work they undertake for their hospitals. Hatchett (2006) discusses the utilising the NHS knowledge, skills, framework to plan the development of levels of competency for practitioners, it was disappointing within the literature review not to read authors use of competencies.

Mugarza et al (2008) conducted a small scale of 71 patients for which only 52 completed the 12 month audit time line, the focus of the study was adhering to a validated clinical algorithm to optimise patient’s therapeutic management in a nurse led clinic. It clearly demonstrated a quantitive observed physical improvement due to drug therapy, managed by nurses. They stated that 15-20% of the case load had to be discussed with the medical doctors at the end of clinic. I believe this certainly provided peer support, and ensured patient safety.

Mugarza et al (2008) concluded that the nurse led clinic demonstrated and supported compliance, and implied that such compliance would improve quality of life and a physical wellbeing. I question the reliability of such statement, given the fact that the research was quantitive not qualitative, and had no patient satisfaction element.

Patient satisfaction.

Bhattacharys et al (2007) undertook a small qualitive patient satisfaction non validated questionnaire sent out by post, on a nurse led diabetic clinic, it was very simple in its construction, 91 patients were identified of which 68 replied (75%). Although the results were positive and scored the service highly, the authors concluded that they had detailed knowledge of patients, their lives and family and that it created a long lasting therapeutic relationship, which had a positive outcome on the HbA of 0.8% stating this was due to their frequent contact does improve patient outcomes. This was supported by Mugarza et al (2008) findings in their study, describing it as the “Hawthorne effect” were participant’s try harder when they know they in a trail or experiment (Draper 2002). I question the reliability and validity of these statements for Bhattacharys study given the fact the nurse led clinic was an annual review and small sample, this is supported by Burns and Grove (2007). The authors did acknowledge that the survey was small yet stated that it was random and representative unlike Hicks et al (2012) whose audit of nurse consultant led clinic demonstrated limitations that it was not randomised in however patient response bias is always a risk to the results (Waltz et al 2005).)

Outcomes benefiting the patient

Hatchett (2006) stated that, “there requires to a patient focused and a measurable effective outcome”. However, does a nurse led service compare favourable to that of a medical clinic, which is seen as the gold standard to follow up management. Hatchett (2008) believes that patients will expect a higher standard of care compared to the care offered by our medical counterparts.

Miles et al (2003) undertook a qualitative study with a well-constructed questionnaire demonstrating reliability and elements of validity. 282 participants completed the patient satisfaction questionnaires equally spread between the nursing and medical disciplines with 90% response rate. No significance difference was found measuring interpersonal relationships and patients were satisfied with the level of care received by both groups. These views are supported by the large scale qualitative study of Beaver et al (2010) and Xue (2010) review of effectiveness of cardiac nurse led clinics. It clearly demonstrates that nursing follow up is equally in benefits and care provided to patients that a medical follow up provides, in essence no harm was caused to the patient.

Miles et al (2003) further adds that nursing clinics are a satisfactory substitute to the present model of medical led clinics. Supporting this view is the work of Sanne et al (2010) with their quantitive study comparing nursing and medical follow ups working in the HIV setting, clearly demonstrated that the measured therapeutic outcomes equalled that of the doctors, however control of illness could lead to and be interpreted as an improvement of quality of life, however this is a subjective view by interpreting the qualitative and quantitive studies together.

Lewis (2010) in undertaking a review of effectiveness of nurse led clinics determined that there were no statistical differences that were significant to demonstrating increase of survival, reoccurrence rates and psychological morbidity. However Lewis (2010) does concede in the implications for practice that nurse led follow up could potentially benefit the patient in psychological support. I believe that utilising nurse led services for psychological support is a soft and less cost effective way of employing an advanced nurse practitioner, especially in the times of fiscal constraints as well as purposely assigning the nurse role to an inferior position and devaluing the clinical follow up when reviewing patients compared to medical colleagues.

Patient expectations are entwined with outcomes, Redsell et al (2007) with their qualitive small scale study of patients met and unmet expectations when follow up by a nurse, concluded that most patients were satisfied with the follow up consultations. What concerns me is that the study was extremely small with no validity or reliability, even the author’s stated caution interpreting the results.

Summary

It is evident from the literature that researchers have adopted a wide variation of research method, and drawing conclusion can add confusion when trying to link them to other findings. Linked with this was a lack of evidence that demonstrated suitable experience and qualifications to undertake nurse led follow up safely in accordance with the NMC code of professional conduct (2008). It was evident from the literature review that clinical governance issues were not discussed to address patient safety; Hutchinson (2007) has also observed this phenomenon in the body of literature. The nurse led clinic has to more than a hand holding clinic for emotion support, there has to be a therapeutic outcome for the patient, with this there has to an element of role satisfaction, which was not addressed within the literature review.

The study of Redsell (2007) identified from their study that patients believed the nurse to be subordinate to the doctors, and further added they believed that patient expectations of nurses would increase as the role developed. However role development can only occur with autonomy, Hutchinson (2011) has observed inconsistent levels of autonomy in nurse led practices. Beaver et al (2010) also identified that nurse led follow up created a friendship. My concern is that allowing a friendship to develop is a blaring of professional boundaries, which could lead to an unprofessional balance in the relationship.

It has been concluded that patients are not adversely comprised by nurse follow up; the literature supports that the outcomes and satisfaction are equal to if not better than medical colleagues, especially when combined to quality of life (Xue 2011). To confirm this in any new clinical venture there requires a measured effectiveness through audit (Hatchett 2008).

This literature review found a lack of research based solely on patient experiences when reviewed by nurses in a clinic setting. This demonstrates the need and importance to undertake this research proposal, with main objective to focus on the lived experience of the patient being reviewed by a nurse in clinic. If this potential research proposal is accepted will aid towards the development in setting up a future nurse led clinic.

“The patient experience following Specialist Nurse consultation review in a follow up clinic.”

Methodology

It is imperative to use the correct methodology to ensure that as a researcher you achieve the best results and for research project to be a success in its aims and objectives (Jasper 1994). The most appropriate method for this investigation would be to use the qualitative method. The rationale is based on patient experience as discussed by (Robson 2002) quantitative research does not possess the quality material of in depth understanding needed from the patient’s perspective which is supported by Sadala and Adorno (2002). Qualitative research findings are formed from actual patient expressions, emotions and most importantly their own personal experiences and their humanistic behaviours (Rossman & Rallis 2003). Following the premise that phenomenology can be easily applied to the development of nursing knowledge and research (Jones 2001, Priest 2002), through describing and interpretation (Taylor 1995) rather than measurement and predictions. This as a qualitative researcher it is important gain knowledge from emotions, personal experiences, personal values and cultural differences and perceptions for this to succeed in a qualitative investigation (Byrne 2001).

Sample

As a qualitative researcher there are various sampling strategies available Patton (1990), Miles and Huberman (1994) and Onwuegbuzie and Leech (2004b). Using a sample strategy in selecting participants is crucial in recruiting the correct participants to explore and compare their experiences needed to answer the investigation as discussed by Lane et al (2001) and Meadows (2003). A purposeful random sampling will be used in this selection process as potential participants for its shared characteristics needed to answer the phenomenon as highlighted by Patton (2002). The criteria for this purposeful random sample selection are as follows:

Inclusion Criteria

Only open to haematology patients under the care of the Trust.

Can only be current haematology patients being monitored in the out-patient clinics.

Must have been reviewed by the clinical haematology nurse specialist previously.

Exclusion Criteria

New Referral

No Consent

Lack of capacity

Sample size is debateable, according to Onwuegbuzie and Collins (2007) too big a sample would be too difficult to extract all the data, however (Flick, 1998; Morse, 1995) disagree that too small is difficult to achieve data saturation. The purposeful random sample selection size required for this potential investigation is 15 participants and this size is supported by (Speziale and Carpenter 2007) stating this number of participants are able to provide rich descriptions of the potential investigation. However there are no rules for the size of samples in qualitative investigations according to Patton (2002), he claims it is about maintaining credibility not representativeness.

How will the participants be recruited into the investigation? This will be with the involvement of the clinical audit department. The clinical audit department will randomly select 30 patients that the haematology nurse specialist has reviewed in the last 3 months. This will prevent loss of patient recall. (REF)

An information pack approved by the research and development department and the patient information department will be sent out to the 30 potential participants. This pack will enclose a covering letter explaining fully the investigation and offering the opportunity to participate. Enclosed in the pack will be a pre-paid addressed envelope to the clinical audit department and a return reply slip for potential participant to complete indicating yes or no to participate in the phenomenon. The clinical audit department will recruit the first 15 people that reply to participate in the investigation and will have a reserve list if participants change their mind. The clinical audit will have complete control in this part of this process. (REF is audit dept better ???)

This investigation will be conducted utilising one to one interviews as a tool to collect the data.

Data Collection

Not utilising the right data collection tool may hinder acquiring and extracting essential data Emore Weolke (1997). As discussed by Marshall & Rossman (2006) questionnaires and patient documentary diaries are good approaches but only if patients participate, this is confirmed by Hicks et al (2012) only receiving 29% response rate in their retrospective questionnaire audit. Therefore an interview approach will be used as it will provide the highest rate of data collection (Sanderman and Wells 2011 and Beaver et al 2010) and reliability (Bowling 2004).

One to one interviews can be more flexible as discussed by (Kvale 1996) which allows sensitive information being discussed more openly in comparison to a quantitative approach as supported by (Jackson 1998). Using a semi structured approach, where the participant can record their feelings and explore experiences Cormack (2000) describes this as an enlightening process which will allow the researcher the opportunity to identify quality data and themes (Martins 1992).

The interviews will take place over a period of one month at a suitable time for the patients for an one hour interview which will be conducted in a counselling room and not the usual busy out-patient setting to ensure privacy. This will prevent being interrupted as distractions could contribute to a lack of understanding of the questioning (Malik et al 2002) and be unsuccessful in obtaining the right data. Kleiman (2005) states that by using the descriptive phenomenological method, the researcher assumes an attitude of openness and readiness to listen to the descriptions of peoples experiences

Data Analysis

There are more issues in qualitative research analysis in comparison to quantitive due to the complexity of the data for interpretation by the researcher (Patton 2002). Analysing subjective data of words, thoughts, feelings which makes it more complex than deductive numbers expressed in quantitative research (Tollick 2004). Quantitive data is usually collected before the analysis process commences whereas analysis begins as soon as qualitative data is being collected (Burnard 1996). Phenomenology will be the analytic approach in this proposed investigation using this concept as discussed by (Colazzi 1978) in analysing the data will answer the question in this investigation. This correlates with Moustakas (1994) who describes phenomenology as the study of the shared meaning of experience of a phenomenon for several individuals. As a researcher I find ethnography approach of Straus and Corbin (1990) a workable concept as this uses a questioning approach comparing methods of different groups, cultures and practices. However it is not suitable for this this investigation, this type of analysis would be more conducive if perhaps comparing different speciality nurse led clinics or comparing nurse led clinic to a Doctor led clinic. Analytical grounded theory as discussed by Morse & Field (1966) would be selected if this patient experience was a new concept which it is not (DOH 2010 and DOH 2012).

It is imperative that the researchers remain unbiased (Polit and Hungler 1995) separating their own views and opinions when interpreting the data (Brink and Wood 1998). By listening to the taped interview and reading the transcript a several times they will gain a sense of the whole interview (Giorgi 1975) and identify themes from the codes utilising Ritchie and Spencer’s (1994) five stages of framework analysis. These themes relating to participants feelings, thoughts and experience can subsequently be presented robustly in a table with headed categories and supportive statements.

Reliability Validity and Rigour

Analysis of qualitative data is more subjective and a systemic rigour of data analysis is fundamental and crucial to validate the data ensuring they are trustworthy (Long and Johnson 2000). However this data is only as good as people give the information which fulfill four key areas of credibility, dependability, confirmability and transferability (Parahoo 1997). This qualitative investigation will meet these four key areas to demonstrate its trustworthiness. To maintain validity and trustworthiness the results will be transcribed and a paper copy of the individual transcript will be sent to the individual participants of the investigation for signing. This follows Colazzi (1978) method and participants should agree that it is a fair or accurate account of their answers and what was discussed. This credibility will be enhanced as the sample selection was undertaken solely by the clinical audit department

Two researchers will be conducting the investigation and as discussed Denzin (2000) this use of investigator triangulation will increase the validity of results of this potential investigation which is also supported by Thurmond (2001). The investigation will be valid as more people in the data collection and analysis process supports’ the dependability of the findings (Morse 2010). The findings will not be just one researcher’s opinion or interpretation they will be agreed by the research team ensuring the results are not biased or misleading. Agreed themes by the 2 researcher’s participant will maintain the confirmability needed in this potential investigation. Any identified interesting themes or raised questions from this investigation could be considered and transferred for further study to benefit patients in the trust.

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ETHICS

As a nurse I have a duty to provide safe quality care to my patients ( NMC 2008) and nursing research follows the same ethos it has to be robust ethical and safe (NMC 2012). Ethical approval will have been obtained from the NHS Research Ethics Committee by online application.

This is a legal requirement when conducting research involving NHS patients and staff. Research and Development approval will also be obtained as this phenomenon will take place in a NHS Hospital again using the online application form available at https://www.myresearchproject.org.uk.

Integrity of the phenomenon has to be mandatory unlike in the ethnographic research (Ellis 1986) when participants were identified. The researcher will maintain strict participant confidentiality in accordance with Trust, NHS guidelines Caldicott (DOH 1997), and in accordance with the NMC (2008) to protect the phenomenon participants from harm. Kaiser (2009) states that maintaining confidentiality can be challenging whilst presenting this rich detailed data All subjects have the right to privacy and anonymity (Polit and Hungler 1995pg 124) and (Wood and Brink 1998 pg 152) therefore a confidentiality and anonymity agreement will be undertaken by the researchers and the participant prior to conducting each interview. All taped interviews and transcripts will be locked in a secure office to ensure participant’s personal data remains confidential.

Informed consent is central to ethics and participants will have been fully informed from the information packs they receive about the phenomenon, allowing free conscious choice (Polit and Hungler 1995), before giving their consent voluntarily (Royal College of Nursing 2012). Contact details for the lead researcher will be enclosed regarding questions, concerns or withdrawing from the phenomenon as participant can do so at any stage in the phenomenon (Nursing & Midwifery Council, 2008).

Day of interview participant will be asked if they wish to continue in the phenomenon and written consent obtained a copy given to the participant and original kept in research records.

CONCLUSION

Expertise good interviews require expertise in both the subject matter and human interaction as discussed by (Kvale 1998). The researcher acknowledges the researchers are novices in conducting this type of research and her research is not perfect. As a new researcher this I would learn and develop as I continued to conduct them and also participate alongside other researchers in their phenomenon’s.

Having a lack of experience in conducting interviews may be a weakness and limit the quality data extracted during this phenomenon. Marshall and Rossman (1995) discuss the relevance in considering other methods for obtaining the quality information needed. During the early stages in the design the researcher did consider a questionnaire as the tool used in this phenomenon sending it out to the potential participants. As discussed by (Quote) using an open ended questionnaire cannot be measured like in quantitative research thus making it a quality phenomenon.

However I felt this approach may hinder good quality information being obtained from the participants and also there may be problems with the return of questionnaires (Hicks et al) and the loss of precious quality data. This is why I decided on a semi structured open interview approach is to be used in this phenomenon.

Deciding on the sample selection strategy was more difficult than I thought. I found this to be a problem which initially I thought would quite simple to decide upon. From my interpretation I thought three was applicable for this phenomenon. As a qualitative researcher I struggled to interpret the variety available and what would be the most suitable purposeful strategy. Is this a weakness? It could be if I have used the wrong sample strategy affecting its credibility.

In comparison to other methodologies I agree with Keen (1975) that phenomenology is not like a cookbook with recipes, it is a new approach, with an exploratory stance with a particular set of objectives. Analysing phenomenological data is not straightforward it is very complex and if not interpreted correctly can affect the quality results needed and hinder the aim for the phenomenon.

As a new qualitative researcher new research terminology removes one from their comfort zone when reading the literature and can be difficult to comprehend and understand making it thus difficult to critique. The literature review for this research proposal, could demonstrate a weakness in the critiquing of the literature. (Tarling and Crofts 1998) discuss that literature review and critiquing is nurtured over time.

Time frame when conducting a phenomenon is important as this could be a potential limitation in completion, data becomes old and resources could disappear. Setting a realistic time frame for its completion is crucial allowing extra time for any unforeseen problems. As a researcher you cannot identify in advance those that lack capacity and vulnerable people who may have been contacted to participate (Lewis & Poret 1994). This can be ethically challenging and time consuming especially when ensuring you adhere to vulnerable adult policies. As their experiences and contribution to any investigation should be represented and not excluded.