Skip to main content
Erschienen in: Social Psychiatry and Psychiatric Epidemiology 3/2006

01.03.2006 | ORIGINAL PAPER

Patient and carer perceptions of need and associations with care-giving burden in an integrated adult mental health service

verfasst von: Michelle Cleary, Adele Freeman, Glenn E. Hunt, Garry Walter

Erschienen in: Social Psychiatry and Psychiatric Epidemiology | Ausgabe 3/2006

Einloggen, um Zugang zu erhalten

Abstract

Objective

To identify patients’ and carers’ perceptions of need in inpatient and community settings and investigate the relationship between need and caregiver burden.

Method

The study was conducted across a metropolitan mental health service in Sydney, Australia. Patients (n = 407) and carers (n = 50) completed the Camberwell Assessment of Need Short Appraisal Schedule. Carers also completed a shortened version of the Involvement Evaluation Questionnaire to assess caregiver burden.

Results

When completing the assessment tools, patients and carers in hospital settings were asked to consider the 4 weeks preceding hospitalisation; in the community, patients and carers were asked to consider the previous 4 weeks. These data show a high percentage of patients in hospital and community settings have unmet needs for company, daytime activities and intimate relationships. Inpatients had more unmet needs than community based patients. Agreement between patients’ and carers ratings’ of need ranged from ‘poor’ to ‘moderate’. There was a strong relationship between unmet need and burden from the carer’s perspective. Patients with and without carers had similar numbers of needs. Carers of patients recently admitted to hospital reported a significantly higher burden.

Conclusions

Carers of inpatients experienced significantly more burden than carers of outpatients. Opportunities to access support, information and education should be readily available and not contingent upon demonstrating a close familial relationship to the patient. We found that unmet need was significantly related to burden, suggesting that meeting patient needs could reduce carer burden.
Literatur
1.
Zurück zum Zitat Boye B, Bentsen H, Ulstein I, Notland TH, Lersbryggen A, Lingjaerde O, Malt UF (2001) Relatives’ distress and patients’ symptoms and behaviours: a prospective study of patients with schizophrenia and their relatives. Acta Psychiatr Scand 104:42–50CrossRefPubMed Boye B, Bentsen H, Ulstein I, Notland TH, Lersbryggen A, Lingjaerde O, Malt UF (2001) Relatives’ distress and patients’ symptoms and behaviours: a prospective study of patients with schizophrenia and their relatives. Acta Psychiatr Scand 104:42–50CrossRefPubMed
2.
Zurück zum Zitat Meijer K, Schene A, Koeter M, Knudsen HC, Becker T, Thornicroft G, Vazquez-Barquero JL, Tansella M, EPSILON Multi Centre Study on Schizophrenia (2004) Needs for care of patients with schizophrenia and the consequences for their informal caregivers – results from the EPSILON multi centre study on schizophrenia. Soc Psychiatry Psychiatr Epidemiol 39: 251–258CrossRefPubMed Meijer K, Schene A, Koeter M, Knudsen HC, Becker T, Thornicroft G, Vazquez-Barquero JL, Tansella M, EPSILON Multi Centre Study on Schizophrenia (2004) Needs for care of patients with schizophrenia and the consequences for their informal caregivers – results from the EPSILON multi centre study on schizophrenia. Soc Psychiatry Psychiatr Epidemiol 39: 251–258CrossRefPubMed
3.
Zurück zum Zitat Noble LM, Douglas BC (2004) What users and relatives want from mental health services. Curr Opin Psychiatry 17:289–296CrossRef Noble LM, Douglas BC (2004) What users and relatives want from mental health services. Curr Opin Psychiatry 17:289–296CrossRef
4.
Zurück zum Zitat Freeman A, Malone J, Hunt GE (2004) A statewide survey of high-support services for people with chronic mental illness: assessment of needs for care, level of functioning and satisfaction. Aust N Z J Psychiatry 38:811–818CrossRefPubMed Freeman A, Malone J, Hunt GE (2004) A statewide survey of high-support services for people with chronic mental illness: assessment of needs for care, level of functioning and satisfaction. Aust N Z J Psychiatry 38:811–818CrossRefPubMed
5.
Zurück zum Zitat Phelan M, Slade M, Thornicroft G, Dunn G, Holloway F, Wykes T, Strathdee G, Loftus L, McCrone P, Hayward P (1995) The Camberwell Assessment of Need: the validity and reliability of an instrument to assess the needs of people with severe mental illness. Br J Psychiatry 167:589–595PubMed Phelan M, Slade M, Thornicroft G, Dunn G, Holloway F, Wykes T, Strathdee G, Loftus L, McCrone P, Hayward P (1995) The Camberwell Assessment of Need: the validity and reliability of an instrument to assess the needs of people with severe mental illness. Br J Psychiatry 167:589–595PubMed
6.
Zurück zum Zitat Slade M, Phelan M, Thornicroft G, Parkman S (1996) The Camberwell Assessment of Need (CAN): comparison of assessments by staff and patients of the needs of the severely mentally ill. Soc Psychiatry Psychiatr Epidemiol 31:109–113CrossRefPubMed Slade M, Phelan M, Thornicroft G, Parkman S (1996) The Camberwell Assessment of Need (CAN): comparison of assessments by staff and patients of the needs of the severely mentally ill. Soc Psychiatry Psychiatr Epidemiol 31:109–113CrossRefPubMed
7.
Zurück zum Zitat Issakidis C, Teesson M (1999) Measurement of need for care: a trial of the Camberwell Assessment of Need and the Health of the Nation Outcome Scales. Aust N Z J Psychiatry 33:754–759CrossRefPubMed Issakidis C, Teesson M (1999) Measurement of need for care: a trial of the Camberwell Assessment of Need and the Health of the Nation Outcome Scales. Aust N Z J Psychiatry 33:754–759CrossRefPubMed
8.
Zurück zum Zitat Slade M, Leese M, Taylor R, Thornicroft G (1999) The association between needs and quality of life in an epidemiologically representative sample of people with psychosis. Acta Psychiatr Scand 100:149–157PubMed Slade M, Leese M, Taylor R, Thornicroft G (1999) The association between needs and quality of life in an epidemiologically representative sample of people with psychosis. Acta Psychiatr Scand 100:149–157PubMed
9.
Zurück zum Zitat Macpherson R, Varah M, Summerfield L, Foy C, Slade M (2003) Staff and patient assessments of need in an epidemiologically representative sample of patients with psychosis – staff and patient assessments of need. Soc Psychiatry Psychiatr Epidemiol 38:662–667PubMed Macpherson R, Varah M, Summerfield L, Foy C, Slade M (2003) Staff and patient assessments of need in an epidemiologically representative sample of patients with psychosis – staff and patient assessments of need. Soc Psychiatry Psychiatr Epidemiol 38:662–667PubMed
10.
Zurück zum Zitat Foldemo A, Ek AC, Bogren L (2004) Needs in outpatients with schizophrenia, assessed by the patients themselves and their parents and staff. Soc Psychiatry Psychiatr Epidemiol 39:381–385CrossRefPubMed Foldemo A, Ek AC, Bogren L (2004) Needs in outpatients with schizophrenia, assessed by the patients themselves and their parents and staff. Soc Psychiatry Psychiatr Epidemiol 39:381–385CrossRefPubMed
11.
Zurück zum Zitat Reynolds T, Thornicroft G, Abas M, Woods B, Hoe J, Leese M, Orrell M (2000) Camberwell Assessment of Need for the Elderly (CANE). Development, validity and reliability. Br J Psychiatry 176:444–452CrossRefPubMed Reynolds T, Thornicroft G, Abas M, Woods B, Hoe J, Leese M, Orrell M (2000) Camberwell Assessment of Need for the Elderly (CANE). Development, validity and reliability. Br J Psychiatry 176:444–452CrossRefPubMed
12.
Zurück zum Zitat Lelliott P, Beevor A, Hogman G, Hyslop J, Lathlean J, Ward M (2001) Carers’ and Users’ Expectations of Services-User version (CUES-U): a new instrument to measure the experience of users of mental health services. Br J Psychiatry 179:67–72CrossRefPubMed Lelliott P, Beevor A, Hogman G, Hyslop J, Lathlean J, Ward M (2001) Carers’ and Users’ Expectations of Services-User version (CUES-U): a new instrument to measure the experience of users of mental health services. Br J Psychiatry 179:67–72CrossRefPubMed
13.
Zurück zum Zitat Baronet AM (1999) Factors associated with caregiver burden in mental illness: a critical review of the research literature. Clin Psychol Rev 19:819–841CrossRefPubMed Baronet AM (1999) Factors associated with caregiver burden in mental illness: a critical review of the research literature. Clin Psychol Rev 19:819–841CrossRefPubMed
14.
Zurück zum Zitat Guberman N, Nicholas E, Nolan M, Rembicki D, Lundh U, Keefe J (2003) Impacts on practitioners of using research-based carer assessment tools: experiences from the UK, Canada and Sweden, with insights from Australia. Health Soc Care Community 11:345–355CrossRefPubMed Guberman N, Nicholas E, Nolan M, Rembicki D, Lundh U, Keefe J (2003) Impacts on practitioners of using research-based carer assessment tools: experiences from the UK, Canada and Sweden, with insights from Australia. Health Soc Care Community 11:345–355CrossRefPubMed
15.
Zurück zum Zitat Addington J, Coldham EL, Jones B, Ko T, Addington D (2003) The first episode of psychosis: the experience of relatives. Acta Psychiatr Scand 108:285–289CrossRefPubMed Addington J, Coldham EL, Jones B, Ko T, Addington D (2003) The first episode of psychosis: the experience of relatives. Acta Psychiatr Scand 108:285–289CrossRefPubMed
16.
Zurück zum Zitat Cleary M, Freeman A, Hunt GE, Walter G (2005) What patients and carers want to know: an exploration of information and resource needs in adult mental health services. Aust N Z J Psychiatry 39:507–513CrossRefPubMed Cleary M, Freeman A, Hunt GE, Walter G (2005) What patients and carers want to know: an exploration of information and resource needs in adult mental health services. Aust N Z J Psychiatry 39:507–513CrossRefPubMed
17.
Zurück zum Zitat Gallagher J, Teesson M (2000) Measuring disability, need and outcome in Australian community mental health services. Aust N Z J Psychiatry 34:850–855CrossRefPubMed Gallagher J, Teesson M (2000) Measuring disability, need and outcome in Australian community mental health services. Aust N Z J Psychiatry 34:850–855CrossRefPubMed
18.
Zurück zum Zitat Slade M (1994) Needs assessment. Involvement of staff and users will help to meet needs. Br J Psychiatry 165:293–296PubMed Slade M (1994) Needs assessment. Involvement of staff and users will help to meet needs. Br J Psychiatry 165:293–296PubMed
19.
Zurück zum Zitat Schene AH, van Wijngaarden B, Koeter MW (1998) Family caregiving in schizophrenia: domains and distress. Schizophr Bull 24:609–618PubMed Schene AH, van Wijngaarden B, Koeter MW (1998) Family caregiving in schizophrenia: domains and distress. Schizophr Bull 24:609–618PubMed
20.
Zurück zum Zitat van Wijngaarden B, Schene AH, Koeter M, Vazquez-Barquero JL, Knudsen HC, Lasalvia A, McCrone P (2000) Caregiving in schizophrenia: development, internal consistency and reliability of the Involvement Evaluation Questionnaire – European Version. EPSILON Study 4. Br J Psychiatry 177(Suppl 39):s21–s27 van Wijngaarden B, Schene AH, Koeter M, Vazquez-Barquero JL, Knudsen HC, Lasalvia A, McCrone P (2000) Caregiving in schizophrenia: development, internal consistency and reliability of the Involvement Evaluation Questionnaire – European Version. EPSILON Study 4. Br J Psychiatry 177(Suppl 39):s21–s27
21.
Zurück zum Zitat Landis J, Koch GG (1977) The measurement of observer agreement for categorical data. Biometrics 33:159–174PubMed Landis J, Koch GG (1977) The measurement of observer agreement for categorical data. Biometrics 33:159–174PubMed
22.
Zurück zum Zitat Lasalvia A, Ruggeri M, Mazzi MA, Dall’Agnola RB (2000) The perception of needs for care in staff and patients in community-based mental health services. The South-Verona Outcome Project 3. Acta Psychiatr Scand 102:366–375CrossRefPubMed Lasalvia A, Ruggeri M, Mazzi MA, Dall’Agnola RB (2000) The perception of needs for care in staff and patients in community-based mental health services. The South-Verona Outcome Project 3. Acta Psychiatr Scand 102:366–375CrossRefPubMed
23.
Zurück zum Zitat Hansson L, Sandlund M, Bengtsson-Tops A, Bjarnason O, Karlsson H, Mackeprang T, Merinder L, Nilsson L, Sorgaard K, Vinding H, Middelboe T (2003) The relationship of needs and quality of life in persons with schizophrenia living in the community. A Nordic multi-center study. Nord J Psychiatry 57:5–11PubMed Hansson L, Sandlund M, Bengtsson-Tops A, Bjarnason O, Karlsson H, Mackeprang T, Merinder L, Nilsson L, Sorgaard K, Vinding H, Middelboe T (2003) The relationship of needs and quality of life in persons with schizophrenia living in the community. A Nordic multi-center study. Nord J Psychiatry 57:5–11PubMed
24.
Zurück zum Zitat Slade M, Leese M, Ruggeri M, Kuipers E, Tansella M, Thornicroft G (2004) Does meeting needs improve quality of life? Psychother Psychosom 73:183–189CrossRefPubMed Slade M, Leese M, Ruggeri M, Kuipers E, Tansella M, Thornicroft G (2004) Does meeting needs improve quality of life? Psychother Psychosom 73:183–189CrossRefPubMed
25.
Zurück zum Zitat Hancock GA, Reynolds T, Woods B, Thornicroft G, Orrell M (2003) The needs of older people with mental health problems according to the user, the carer, and the staff. Int J Geriatr Psychiatry 18:803–811CrossRefPubMed Hancock GA, Reynolds T, Woods B, Thornicroft G, Orrell M (2003) The needs of older people with mental health problems according to the user, the carer, and the staff. Int J Geriatr Psychiatry 18:803–811CrossRefPubMed
26.
Zurück zum Zitat Pejlert A (2001) Being a parent of an adult son or daughter with severe mental illness receiving professional care: parents’ narratives. Health Soc Care Community 9:194–204CrossRefPubMed Pejlert A (2001) Being a parent of an adult son or daughter with severe mental illness receiving professional care: parents’ narratives. Health Soc Care Community 9:194–204CrossRefPubMed
27.
Zurück zum Zitat Thornicroft G, Leese M, Tansella M, Howard L, Toulmin H, Herran A, Schene A (2002) Gender differences in living with schizophrenia. A cross-sectional European multi-site study. Schizophr Res 57:191–200CrossRefPubMed Thornicroft G, Leese M, Tansella M, Howard L, Toulmin H, Herran A, Schene A (2002) Gender differences in living with schizophrenia. A cross-sectional European multi-site study. Schizophr Res 57:191–200CrossRefPubMed
28.
Zurück zum Zitat Wolthaus JE, Dingemans PM, Schene AH, Linszen DH, Wiersma D, Van Den Bosch RJ, Cahn W, Hijman R (2002) Caregiver burden in recent-onset schizophrenia and spectrum disorders: the influence of symptoms and personality traits. J Nerv Ment Dis 190:241–247CrossRefPubMed Wolthaus JE, Dingemans PM, Schene AH, Linszen DH, Wiersma D, Van Den Bosch RJ, Cahn W, Hijman R (2002) Caregiver burden in recent-onset schizophrenia and spectrum disorders: the influence of symptoms and personality traits. J Nerv Ment Dis 190:241–247CrossRefPubMed
29.
Zurück zum Zitat Szmukler GI, Burgess P, Herrman H, Benson A, Colusa S, Bloch S (1996) Caring for relatives with serious mental illness: the development of the Experience of Caregiving Inventory. Soc Psychiatry Psychiatr Epidemiol 31:137–148PubMed Szmukler GI, Burgess P, Herrman H, Benson A, Colusa S, Bloch S (1996) Caring for relatives with serious mental illness: the development of the Experience of Caregiving Inventory. Soc Psychiatry Psychiatr Epidemiol 31:137–148PubMed
30.
Zurück zum Zitat Tsang HW, Tam PK, Chan F, Chang WM (2003) Sources of burdens on families of individuals with mental illness. Inter J Rehabil Res 26:123–130 Tsang HW, Tam PK, Chan F, Chang WM (2003) Sources of burdens on families of individuals with mental illness. Inter J Rehabil Res 26:123–130
31.
Zurück zum Zitat Foldemo A, Gullberg M, Ek AC, Bogren L (2005) Quality of life and burden in parents of outpatients with schizophrenia. Soc Psychiatry Psychiatr Epidemiol 40:133–138CrossRefPubMed Foldemo A, Gullberg M, Ek AC, Bogren L (2005) Quality of life and burden in parents of outpatients with schizophrenia. Soc Psychiatry Psychiatr Epidemiol 40:133–138CrossRefPubMed
32.
Zurück zum Zitat Tucker C, Barker A, Gregoire A (1998) Living with schizophrenia: caring for a person with a severe mental illness. Soc Psychiatry Psychiatr Epidemiol 33:305–309CrossRefPubMed Tucker C, Barker A, Gregoire A (1998) Living with schizophrenia: caring for a person with a severe mental illness. Soc Psychiatry Psychiatr Epidemiol 33:305–309CrossRefPubMed
33.
Zurück zum Zitat Joyce J, Leese M, Kuipers E, Szmukler G, Harris T, Staples E (2003) Evaluating a model of caregiving for people with psychosis. Soc Psychiatry Psychiatr Epidemiol 38:189–195CrossRefPubMed Joyce J, Leese M, Kuipers E, Szmukler G, Harris T, Staples E (2003) Evaluating a model of caregiving for people with psychosis. Soc Psychiatry Psychiatr Epidemiol 38:189–195CrossRefPubMed
Metadaten
Titel
Patient and carer perceptions of need and associations with care-giving burden in an integrated adult mental health service
verfasst von
Michelle Cleary
Adele Freeman
Glenn E. Hunt
Garry Walter
Publikationsdatum
01.03.2006
Erschienen in
Social Psychiatry and Psychiatric Epidemiology / Ausgabe 3/2006
Print ISSN: 0933-7954
Elektronische ISSN: 1433-9285
DOI
https://doi.org/10.1007/s00127-005-0017-z

Weitere Artikel der Ausgabe 3/2006

Social Psychiatry and Psychiatric Epidemiology 3/2006 Zur Ausgabe

So wirken verschiedene Alkoholika auf den Blutdruck

23.05.2024 Störungen durch Alkohol Nachrichten

Je mehr Alkohol Menschen pro Woche trinken, desto mehr steigt ihr Blutdruck, legen Daten aus Dänemark nahe. Ob es dabei auch auf die Art des Alkohols ankommt, wurde ebenfalls untersucht.

„Übersichtlicher Wegweiser“: Lauterbachs umstrittener Klinik-Atlas ist online

17.05.2024 Klinik aktuell Nachrichten

Sie sei „ethisch geboten“, meint Gesundheitsminister Karl Lauterbach: mehr Transparenz über die Qualität von Klinikbehandlungen. Um sie abzubilden, lässt er gegen den Widerstand vieler Länder einen virtuellen Klinik-Atlas freischalten.

ADHS-Medikation erhöht das kardiovaskuläre Risiko

16.05.2024 Herzinsuffizienz Nachrichten

Erwachsene, die Medikamente gegen das Aufmerksamkeitsdefizit-Hyperaktivitätssyndrom einnehmen, laufen offenbar erhöhte Gefahr, an Herzschwäche zu erkranken oder einen Schlaganfall zu erleiden. Es scheint eine Dosis-Wirkungs-Beziehung zu bestehen.

Klinikreform soll zehntausende Menschenleben retten

15.05.2024 Klinik aktuell Nachrichten

Gesundheitsminister Lauterbach hat die vom Bundeskabinett beschlossene Klinikreform verteidigt. Kritik an den Plänen kommt vom Marburger Bund. Und in den Ländern wird über den Gang zum Vermittlungsausschuss spekuliert.

Update Psychiatrie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.