care-quality-commission-report-recognising-excellence-in-healthsocial-care-8th-july-2011

RESEARCH THESIS IN SUBMISSION FOR THE AWARD OF DOCTOR OF PHILOSOPHY TITLE: WELL-BEING AND OLDER PEOPLE: A QUALITATIVE INVESTIGATION INTO THE CONCEPT OF WELL-BEING AS INFORMED BY THE PERSONAL PERSPECTIVES OF OLDER PEOPLE DRAWN FROM CLINICAL AND NON-CLINICAL POPULATIONS AUTHOR: ANDREW PAPADOPOULOS BSc (HONS), MSc, C.Psychol INSTITUTE OF GERONTOLOGY KING’S COLLEGE LONDON UNIVERSITY OF LONDON SEPTEMBER 2008 TO: JENNY MY APPRECIATION FOR A SHARED JOURNEY AND FOR YOUR SUPPORT, ENCOURAGEMENT AND GUIDANCE THROUGHOUT, WITH LOVE ABSTRACT The term Well-Being is widely used in health and social care Yet there is todate, no consensual definition of well-being apparent in the literature Theoretical formulations of well-being have been grounded within a wide variety of frameworks, models and perspectives of human existence with insufficient attention having been given towards the development of a model or theory of well-being informed by the perspectives and opinions of older people themselves In addition, research clearly shows that ethnicity and mental health have important contributions to our understanding of well-being, but have rarely been considered together in well-being research Accordingly, the following research sought to investigate whether a concept of well-being is evident from the personal perspectives of older people drawn from clinical, non-clinical and ethnic minority populations Grounded Theory was identified as the principal method for this investigation and for reasons of Triangulation, three sources of data were chosen: i) An analysis of ten clinical case files involving former patients who had received psychological treatment for a range of psychological difficulties ii) A non-clinical population of older people drawn from the Thousand Elders Project – University of Birmingham iii) A smaller non-clinical population of older people drawn from an African-Caribbean Community Centre in Birmingham Data was analysed using a Grounded Theory approach with respect to the interview samples with a purely thematic analysis to analyse the data from the clinical cases Results: Six overarching themes emerged namely: Integrity of Self, Integrity of Other, Belonging, Agency, Enrichment and Security Each theme was considered as reflecting a distinctive property of well-being and each having three psychological dimensions: Subjective; Behavioural and Contextual Each dimension was further divided in terms of reflecting either positive or negative connotation (cc Table 26 p188 “A Proposed Structural Model of Well-Being”) A second level of analysis of all codes was undertaken in order to explore whether operational relationships or meanings existed between codes This level of analysis intended to reflect how the structural properties and dimensions identified might work together in the day-to-day lives of individuals Eight Themes or psychological Styles were identified which were then aligned into four Typological dimensions namely: Self-assured vs Insecure, Something vs Nothing, Giver vs Martyr, Receiver vs Dependant (cc Figure p213 “A proposed operational model of wellbeing”) It is proposed that the psychological styles Self-assured vs Insecure and Something vs Nothing reflect a single axis of psychological Self (one which is congruous with several existing psychological models of the self) whilst Giver vs Martyr and Receiver vs Dependant reflect a single axis of Management of Self (that is, the way in which individuals manage challenges and threats to one’s core Self in terms of the nature of relationships people form with each other) It was concluded that firstly; the models taken together appear to offer a unique construct and understanding of well-being in terms of the current literature, but one which aligns itself more with Eco-systemic rather than Biomedical, Eudemonic or Existential perspectives Secondly; that together, the models offer a framework for understanding both the structure and operalisation of well-being in the context of older people Thirdly that the models offer a basis for integrating research on Psychological Well-Being and Quality of Life research in Older People ACKNOWLEDGEMENTS I would like to give my sincerest thanks to the following, without whom this research doctorate could not have been undertaken: A) Professors Simon Biggs and Anthea Tinker, Institute of Gerontology, King’s College London; and Dr Jan Oyebode, School of Psychology, University of Birmingham, for their academic supervision, guidance and support throughout B) Jenny LaFontaine, Consultant Nurse; Dr Sarah Willott, Clinical Psychologist; Dr Rachel Spector, Clinical Psychologist, Vercella Phillips and my other colleagues at Birmingham and Solihull Mental Health NHS Trust for additional academic advice and support with independent script analysis C) Teresa Morton, Birmingham and Solihull Mental Health NHS Trust; Valerie Madill, Age Concern, Kingstanding, Birmingham; Dr Laxman Nayak, Centre for Applied Gerontology, University of Birmingham; Deska Howe, AfricanCaribbean Resource Centre, West Bromwich, Birmingham, for their help, support and facilitation in enabling me to contact those older people who agreed to participate in the research D) Professor David De La Horne and Martin Preston, Directors of Psychology, Birmingham and Solihull Mental Health NHS Trust, for their agreement for me to have time and support towards the completion of the PhD E) To all those older people with whom I have had the privilege and pleasure to have known and worked with throughout my professional career and to whom I owe much by way of my knowledge and understanding of late- life psychology F) To my family and friends for their encouragement and support In particular, to my Wife Jenny, for her help and tolerance during some very difficult times G) Finally, I owe particular gratitude to all those people who gave their consent and time to participate in the research SUMMARY The term Well-Being has been widely used to both inform and determine health and social policy, care and treatment and the evaluation of intervention systems as applied to older people Yet there is to-date, no consensual definition of well-being apparent in the literature It is concluded, from the literature review, that theoretical formulations of wellbeing, have been grounded within a wide variety of theoretical models and perspectives of human existence with insufficient attention having been given towards the development of a model or theory of well-being informed by the perspectives and opinions of older people themselves Where well-being indices have been used within the context of outcomeoriented research, such indices have varied widely (e.g across health, psychological and existential dimensions) and have often been used interchangeably with similar indices denoting Quality of Life and Life Satisfaction In addition, research clearly shows that ethnicity and mental health have important contributions to our understanding of well-being, but have rarely been considered together in well-being research If the term is used both as a basis for informing policy and provision to older people and as a criteria for evaluating intervention outcomes, there is an ethical obligation to ensure that the term reflects a valid (evidence-base) foundation for defining and describing parameters of human existence In addition, both the term itself and the way it has been used, has been largely constructed and informed from the perspectives of professionals and academics There is a methodological imperative, therefore, to investigate whether a concept of well-being can be identified from the perspectives of older people themselves In the absence of any evidence for such a construct then, arguably, the term remains assumptive Accordingly, the following research has sought to investigate whether a concept of well-being is evident from the personal perspectives of older people Specifically, the research asks: “Do the personal narratives of older people, as reflected in clinical, nonclinical and ethnic minority populations, provide a meaningful framework for a construct of well-being specific to late life? Principal Aims of the Research: • To critically evaluate the available literature on well-being in relation to its use, definition and research methodology and to develop a reasoned methodology for the current research • To explore how older people, drawn from clinical, non-clinical and ethnic minority populations, construct well-being as derived from an analysis of the results • To consider how this construction of well-being compares and contrasts with those in the literature and to develop a theoretical model of wellbeing based upon it • To critically evaluate the methodology, results and theoretical constructions developed within the current research with a view to providing reasoned directions for future research and to discuss the implications for policy and provision in the care of older people Methodology: Given the aims of the research and that it focuses upon the lived experiences of participants, Grounded Theory was identified as the principal and most appropriate method for this investigation Procedure: For the purposes of Triangulation, three sources of data were chosen The first, involved an analysis of the case notes of ten clinical cases involving patients with a range of psychological difficulties who had undergone a course of psychological treatment but who had been discharged prior to the research (Clinical Sample) The second source of data involved interviewing a non-clinical population of older people drawn from the Thousand Elders Project – University of Birmingham (Non-Clinical Sample) The third source of data, involved interviewing a smaller non-clinical population of older people drawn from an African-Caribbean Community Centre in Birmingham (Ethnic Minority Sample) A series of open questions were developed and formulated as a semistructured interview procedure and piloted with a small sample of older people The data from these pilot interviews were analysed for content and richness of information The interview procedure, together with the original questions, was revised accordingly The revised protocol was then used to interview the Non-Clinical and Ethnic Minority Samples sample In addition, it was used to inform the analysis of the Clinical Sample Analysis: Data drawn from the case files (Clinical Sample) was analysed using Thematic Analysis This data was secondary and incorporated clinical terms and procedures within its content The analysis of each case was used to inform the analysis of each subsequent case Data drawn directly from the interviews (Non-Clinical and Ethnic Minority Samples) was analysed using a Grounded Theory approach Results: Firstly: Six overarching themes emerged and were defined in terms of their relationship with the data, namely: Integrity of Self, Integrity of Other, Belonging, Agency, Enrichment and Security (cc Table 26 p188 “A Proposed Structural Model of Well-Being”) Each theme was conceptualised as reflecting a distinctive property of WellBeing and as consisting of three psychological dimensions: Subjective; Behavioural and Contextual Each dimension was further conceptualised as having either positive or negative connotations according to the way in which respective codes were aligned No specific themes differentiated the three data sources suggesting that the model is representative of the views of all older people in the sample Discriminative characteristics were identified between the clinical and nonclinical samples only at a dimensional level Secondly: A second level of analysis of all codes was undertaken in order to explore whether additional relationships or meanings existed between codes; i.e those reflecting the way in which Well-Being is operationalised or applied in the day-to-day lives of the research participants Eight Themes or Psychological Styles were identified which were then aligned into four Typological dimensions namely: Self-assured vs Insecure, Something vs Nothing, Giver vs Martyr, and Receiver vs Dependant Identifying the structural source of codes for each dimension (from Table 26 p188) revealed that Self-assured vs Insecure and Something vs Nothing reflected codes drawn primarily from the property Integrity of Self, whilst Giver vs Martyr and Receiver vs Dependant, were drawn mainly from properties Integrity of other and Belonging respectively It is proposed that the psychological styles Self-assured vs Insecure and Something vs Nothing reflect a single axis of psychological Self (one which is congruous with several existing psychological models of the self) whilst Giver vs Martyr and Receiver vs Dependant reflect a single axis of Management of Self (that is, the way in which individuals manage challenges and threats to one’s core Self in terms of the nature of relationships people form with each other cc Figure p213) Identifying the percentage of codes denoted for each psychological style by each data set, it can be shown that for the Clinical Sample, the greatest proportion of codes prioritise Insecure, Nothing, Martyr and Dependant, whilst for the Ethnic Minority Sample, the greatest proportion of codes prioritise Selfassured, Something, Giver and Receiver The Non-Clinical Sample codes prioritised Giver with the others falling between the Clinical and Ethnic Minority, codes (cc Figure 4a p214) It is proposed that the Ethnic Minority Sample experience the greatest level of well-being with the Clinical Sample experiencing the least and that well-being within the Ethnic Minority Sample is mainly drawn from their supportive and affirming relationships with family, friends and their faith, and the interests they pursue both individually and within their close community Poor well-being as reflected within the Clinical Sample appears related to a history of difficult relationships and poor self-concept where managing threats to one’s core self is mediated via relationships that involve either dependency or martyrdom or a dynamic interplay between the two The Non-Clinical Sample appear to comprise individuals who whilst neither having a strong sense of self nor being ontologically insecure manage their self by primarily giving to others In terms of the principal aims of the study, it was concluded firstly; that the models taken together appear to offer a unique construct and understanding of Well-Being in terms of the current literature, but one that aligns itself more with an Eco-systemic perspective rather than Bio-medical, Eudemonic or Existential perspectives as described in the literature review Secondly, that together, the models offer a framework for understanding both the structure and operalisation of well-being in the context of older people Thirdly; that the models offer a basis for integrating research on Psychological Well-Being and Quality of Life research in Older People The results are discussed in the light of the literature review and regarding directions for further research 10 Family Family/ Other Feels good/ Accomplishmen Freedom Giving Support/ Cause Humour Independence/ Fit Independence/ Space Independence Influence Interests Isolation Limitations Loss of Awareness Loyalty/ Commitment Making a Difference Manageability Positive Self Reason to Live Received Support Relationships/ Compat Relationships/ Duality Relationships/ Friend Relationships/ Happy Relationships/ Loss Relationships/ Proximity Relationships/ Reciprocity Relationships/ Support Relationships/ Team Restricted Life/ Disability Routine Security/ Control Security/ Financial Security/ Personal Sense of Future Transitions/ Illness Percentage Convergence 0y 0 0 3y 2y 2y 0 0 2y 0 1y 1 0 3y 1y 3y 0 2y 3y 65% 5y 0 0 5y 5y 2y 5y 0y 1y 0 1y 0 2y 1y 2y 2y 4y 0y 2y 1y 0 72% 1y 0 0 3y 1y 3y 0 0 0 0 1y 1y 5y 3y 2y 3y 0 0 3y 0 83% Average = 73% 420 Table 10 (NON-CLINICAL SAMPLE) Number of Scripts (Documents) Containing Individual Codes CODE SCRIPTS abandoned accomplished life 14 accomplishments/personal affirmation alone being alive busy can’t help choice close 12 close/continuing bond community company concern 16 contribution 17 contribution/family-friends 16 drive empathy enjoyment/personal 10 environment faith family 13 family/other feels good/accomplishment giving support/cause humour independence/fit independence/space independence 15 influence interests 16 isolation limitations loss of awareness loyalty/commitment manageability 13 421 positive self reason to live received support relationships/compatibility relationships/duality relationships/friend 14 relationships/happy relationships/loss relationships/proximity 16 relationships/reciprocity 10 relationships/support p and h 16 relationships/team restricted life/disability 11 security/control security/financial security/personal 14 sense of future transitions/illness 422 Table 11 Identified Codes from Clinical (Case Study) Sample Post-Treatment Compared with Codes from Non-Clinical Sample and Pre-Treatment NON-CLINICAL SAMPLE CASE STUDY CLINICAL (CASE STUDY) SAMPLE: POST- SAMPLE Codes Denoted from (F/S) TREATMENT Codes (F/S) Codes Denoted (F/S) in Main Sample in Main same as Change from Case Study Case Sample main in Codes Sample Study sample from (F/S) Original -3 Affirmation Sample Anger towards others Busy +6 (*) Assertion Choice -1 Denial Close/cont bond -2 Self-Anger Community +6 (*) Self-Care Enjoyment/person 10 -1 Trust Environment -1 Useless Self Independence/fit Interests 16 Manageability 13 Positive Self Received Support Relationships/compa 14 tibility Relationship/friend Relationship/happy Relationships/ p-h 16 Transitions/illness KEY: * = Code change from negative to positive connotation Table 17 (ETHNIC MINORITY SAMPLE) Derived Codes vs Frequency in Sample 425 PRIMARY DOCS CODES 10 Totals accomplished life 0 0 2 accomplishments 0 0 0 alone 0 0 15 being loved 0 0 can’t help-disability 0 0 2 0 commitment 0 0 0 community 0 1 0 concern 0 2 0 contented life 2 1 2 13 contribution-giving 0 0 0 0 contribution-others 3 14 contribution-social 0 0 0 0 environment-happy 0 0 0 environment-proximit 0 0 0 faith-belonging 1 0 0 faith-communication 0 1 0 faith-creator 1 0 0 faith-influence 0 0 1 1 faith-living one’s l 0 0 0 faith-moral values 0 0 0 0 faith-source of love 1 0 family 1 1 1 family-as foundation 0 0 0 family-close 0 1 family-communication 0 0 0 family-concern 2 0 1 10 family-feeling loved 0 0 0 family-fun/celebrati 0 0 0 family-happy 0 0 0 family-healthy 0 1 0 0 family-independent 0 0 family-loss 0 0 1 family-proud 1 0 1 family-sacrifice 0 0 0 0 family-support 0 2 17 family-support/recip 0 1 0 0 426 family proximity 0 1 1 freedom 0 0 0 0 good childhood 0 0 0 0 happy with work-past 0 0 0 0 having a life 0 0 0 0 health-peace of mind 0 0 0 0 health-independence 1 2 0 12 health-negative self 0 0 0 health-self care 0 0 1 help others 0 0 0 help others-fulfillm 0 0 0 independence 1 4 20 independence-fit 0 1 2 0 interests 0 0 0 0 interests-academic/a 0 0 0 0 interests-financial 0 0 0 0 interests-gardening 0 0 0 0 interests-music 0 0 0 0 interests-physical 0 0 0 0 Interests-reading 0 0 0 0 interests-singing 0 1 0 0 interests-spectator 0 0 0 0 1 interests-travel 1 0 0 living a peaceful li 0 0 0 0 manageability 1 1 2 13 marginalised 0 0 0 pain/disability-diff 2 1 positive self 1 0 0 relationships-belong 0 0 0 0 relationships-close 1 0 0 0 relationships-compan 0 0 1 relationships-compat 0 0 0 0 relationships-enjoym 0 0 0 0 relationships-friend 1 0 0 relationships-fun 0 0 0 0 relationships-recipr 0 0 0 0 1 relationships-securi 0 0 0 relationships-suppor 0 2 0 relationsips-proximi 0 0 0 0 respectful life 0 0 1 427 sad world 0 0 1 security-financial 0 0 security-mental heal 1 0 0 0 security-physical 0 0 0 self-directive 1 0 0 1 self as fortunate 0 0 0 social interaction 0 0 0 0 socialising 0 0 0 0 Totals 50 33 37 57 35 34 23 37 38 42 386 Table 17a: (ETHNIC MINORITY SAMPLE) identified narratives for “Contented Life” 428 P 1: MSE 1.asc – 1:34 (225:225) (Super) Codes: [contented life] generally good P 1: MSE 1.asc – 1:50 (369:370) (Super) Codes: [contented life] Not at the moment as it as it stands P 3: MSE 2.asc – 3:23 (87:88) (Super) Codes: [contented life] I’ve got a few aches and pains but generally speaking im better off than most people P 3: MSE 2.asc – 3:34 (139:140) (Super) Codes: [contented life] at the moment I don’t think theres anything I would like to change P 4: MSE 3.asc – 4:33 (273:273) (Super) Codes: [contented life] I enjoy life P 4: MSE 3.asc – 4:41 (348:349) (Super) Codes: [contented life] we enjoy life P 4: MSE 3.asc – 4:44 (365:367) (Super) Codes: [contented life] AP Yes So you feel your you feel your life has been good I3 Yes yeah so far P 5: MSE 4.asc – 5:6 (33:34) (Super) 429 Codes: [contented life] I’m really I really grateful for the stage I am at now you know so that’s it really P 6: MSE 5.asc – 6:26 (278:284) (Super) Codes: [community] [contented life] [relationships-close] [relationships-friendships] Yes we are happy people here AP Yeah absolutely I5 And I love it because we all get along together P 8: MSE 7.asc – 8:15 (206:221) (Super) Codes: [being loved] [contented life] [respectful life] Friendship and love is a great thing and you what you have to in this world is show respect and the respect what you shown people always love you everybody wont love you though but majority will love you AP Yeah so respect is important as well I7 Respect is a great thing the world is a great world and many people don’t understand respect or love and if you have respect in your home and the street wherever you go you’ll be alright P 8: MSE 7.asc – 8:29 (390:390) (Super) Codes: [contented life] the same thing I’m doing now P10: MSE 9.asc – 10:22 (272:272) (Super) Codes: [contented life] Wouldn’t change a thing I’m satisfied P10: MSE 9.asc – 10:23 (282:284) (Super) Codes: [contented life] I don’t think that’s I I cant think of anything which makes me unhappy I cant think I’m trying to think Table 18: (ETHNIC MINORITY SAMPLE) Covergent codes identified by independent assessor (scripts 1, and 3) denoted as “Y” 430 PRIMARY DOCUMENTS CODES accomplished life accomplishments alone being loved can’t help-disabilit commitment community concern contented life contribution-giving contribution-others contribution-social environment-happy environment-proximit faith-belonging faith-communication faith-creator faith-influence faith-living one’s life faith-moral values faith-source of love family family-as foundation family-close family-communication family-concern family-feeling loved family-fun/celebrati family-happy family-healthy family-independent family-loss family-proud family-sacrifice family-support family-support/recip family proximity freedom good childhood happy with work-past having a life health-peace of mind health-independence health-negative self health-self care help others help others-fulfillm Independence independence-fit Interests (ALL) living a peaceful li manageability marginalised pain/disability-diff MSE 1Y 0 2Y 3Y 2Y 0 1 0 1Y 1Y 1Y 0 1Y 0 0 0 0 0 0Y 0 1Y 1Y 0 2Y 3Y 3Y 1Y 3Y 1Y 1Y 0 MSE 0 0 0 1Y 0 3Y 0 1Y 1Y 1Y 2Y 1Y 0 1Y 0 0 0 0 0 0 1Y 0 1Y 1Y 1Y 1Y MSE 0 0 0 0 2Y 1Y 1Y 1Y 0 0 0 1Y 1Y 0Y 0 1Y 0 1Y 0 1Y 3Y 1Y 1Y 1Y 0 431 positive self relationships-belong relationships-close 1Y 1Y 1 1Y 0 1Y relationships-compan relationships-compat relationships-enjoym relationships-friend relationships-fun relationships-recipr relationships-securi relationships-suppor relationsips-proximi respectful life sad world security-financial security-mental heal security-physical self-directive self as fortunate social interaction socialising Percentage Convergence 1Y 1Y 1Y 0 0 1Y 1Y 1Y 1 71% 0 1Y 0 0 0 1Y 0 64% 2Y 0 0 0 1Y 0 2Y 0 0 68% Average = 68% 432 Table 19 (ETHNIC MINORITY SAMPLE) Number of scripts containing Individual codes CODES Number of scripts accomplished life accomplishments alone being loved can’t help-disabilit commitment community concern contented life contribution-giving contribution-others contribution-social environment-happy environment-proximit faith-belonging faith-communication faith-creator faith-influence faith-living one’s l faith-moral values faith-source of love 433 family family-as foundation family-close family-communication family-concern family-feeling loved family-fun/celebrati family-happy family-healthy family-independent family-loss family-proud family-sacrifice family-support family-support/recip family proximity freedom good childhood happy with work-past having a life health-peace of mind health-independence health-negative self health-self care help others help others-fulfillm independence independence-fit interests interests-academic/a interests-financial interests-gardening interests-music interests-physical Interests-reading interests-singing interests-spectator interests-travel living a peaceful li manageability 10 434 marginalised pain/disability-diff positive self relationships-belong relationships-close relationships-compan relationships-compat relationships-enjoym relationships-friend relationships-fun relationships-recipr relationships-securi relationships-suppor relationsips-proximi respectful life sad world security-financial security-mental heal security-physical self-directive self as fortunate social interaction socialising - 435