Over the last ten years in mental health, there has been a significant change and considerable debate about the definition of dual diagnosis, this terminology refers to a mental health disorder combined with substance misuse (Department of Health, 2002). This can cover a broad range of disorders from learning disabilities and substance abuse of legal or illegal drugs to severe mental illness such as schizophrenia and substance misuse of cannabis or alcohol (Department of Health, 2002). However in medicine dual diagnosis is an umbrella term, for a primary and secondary disorder for example diabetes and hypertension (Sowers & Epstein, 1995) This research proposal will focus on the client group duality of psychosis and substance misuse of cannabis or alcohol.
Psychosis can be defined as a severe mental health disorder in which thought and emotions are significantly impaired, whereby people can lose contact with reality. However the symptoms can vary between negative and positive, the negative symptoms can cause apathy, a reduction or absence of social skills, resulting in confused thoughts which impair their ability to concentrate or complete instructions. The positive symptoms can be defined as either visual or auditory hallucinations or delusional thoughts, where a person may have an undeniable belief in something false (National Institute for Clinical Excellence (NICE), 2011).
However substance abuse can aggravate psychosis leading to further hallucinations, which is associated with a wide range of negative outcomes, such as higher rates of relapse, increased hospitalisation (revolving door clients), suicide, housing issues and poorer levels of social functioning, such as poverty, violence, criminality and social exclusion, less compliance with treatment, greater service costs to National Health Service (NHS) or the criminal justice system and government services (Department of Health, 2007).
More significantly The World Health Organization (WHO) reported 51,353 admissions of drug-related mental health disorders in 2010/11. These admissions have increased year on year and are now nearly twice as high as they were ten years ago, therefore families are at greater risk of having a family member diagnosed with dual diagnosis (The World Health Organization , 2012).
Significantly the impact of the dually diagnosed within families is drastic, family dynamics are altered by challenging and difficult situations within the home, by displaying disruptive and aggressive behaviours (Biegel et al, 2007). Clearly people with dual disorders have strained interactions with their families. However when relationships are strained families might be less willing to help, the relative with dual diagnosis which could contribute to higher rates of homelessness and social problems (Clarke, R E; Drake, R E, 1994). Yet family members may have differing amounts of contact and distancing, because of the negative impacts of their behaviour.
However someone in the family takes the role of main caregiver, being the person most directly linked to the caring of the dually diagnosed whilst care giving not only affects their QOL, it also impacts on possible depressive symptoms and research has indicated that care giving burden has a risk factor for early mortality (Biegel et al, 2007), (Marcon et al, 2012) (Walton-Moss et al, 2005)
Yet a lack of social support, and informal and formal care, has been found to be the most important source that predicts the burden of family caregivers (Biegel et al, 2007) although informal caring occurs naturally within family relationships, which is typically unpaid, this goes beyond the caring expected of these relationships in contrast to a paid formal carer (Chaffey & Fossey, 2004) additionally being a carer can raise difficult personal issues about duty, responsibility, adequacy and guilt (Shah et al, 2010).
Research into the impact of care giving shows that carers suffer significant psychological distress and experience higher rates of mental ill health than the general population, the triggers for distress are as follows; worry, anger, guilt, and shame; financial and emotional strain; marital dissatisfaction, physical effects of the stress of living with a substance abuser (Biegel, et al 2007).
However without the contribution of the UK’s 6.4 million unpaid carers’ health and social care services would collapse. In 2037 it’s anticipated that the number of carers will increase to 9 million (Carers UK, 2012). Worldwide several authors have argued for service systems to acknowledge and address family members need to ensure their own well-being, as well as to ensure effective community support for people living with mental illness (Chaffey & Fossey, 2004) (Igberase et al 2012) (Carey & Leggatt, 1987).
The last ten years have seen major reform of the law as it relates to carers; consequently families have been forced to give up work to care for their relatives. Family carers need assistance to prevent becoming unwell themselves (Carers UK, 2012). Therefore supporting carers must be a central part of government reform, which acknowledges the family as associated clients who desperately need support. This is paramount because relatives often know little about how the interactions between mental illness and substance misuse are interchangeable. Therefore families need practical information about dual disorders, to help recognise the signs of substance abuse, and strategies for its management for example medication adherence and recognising relapse triggers. Addressing these factors would enable the improvement in the dually diagnosed directly related to greater outcomes in the well-being of the family (Mueser & Fox, 2002).
It costs the UK £1.3 billion a year in carers’ benefits and lost taxes whereby family members are becoming increasingly responsible for providing support, although in 2012 the British government submitted the ‘Care and Support Bill’ which will guide future services for caregivers. Families will no longer be treated as an extension of the person they are caring for, they will have a right to an assessment, this will give carers much better access to support them balance their caring roles and responsibilities (Carers UK, 2012). Yet informal carers may experience less choice about the discontinuation of care in comparison to volunteer or paid carers, possibly due to love of the family member and a sense of duty, it is essential that the family understand the facts about dual diagnosis, to have every hope for recovery of the family (Department of Health, 2007)
Additionally health services should acknowledge the families by assessing them as associated clients so that carers can learn to recognise the triggers of caregiver burden and moreover be given general education and health promotion (Rethink, 2007).
However in 2006, the College of Occupational Therapists (COT) announced a 10 year vision for occupational therapy in mental health which included by 2013 for practitioners to have extended their scope of practice across a range of agencies to meet the occupational needs of mental health services (COT, 2006)
The proposed research intends to investigate, what are the experiences of people who are carers for people with dual diagnosis?
To find out how families cope living with someone with dual diagnosis? What are their biggest challenges? To identify the current experiences from the perspective of the carer regarding the impact of dual diagnosis, the burden; grief and the loss of their relative.
The relevance to occupational therapy and the health service; carers are associated clients and therefore need to be taken into consideration when assessing this client group. Furthermore the lacking of occupational therapy literature in this area makes a clear case for the proposed research.
Literatures in dual diagnosis are largely separate, mainly based in substance abuse or mental health fields. However over the past decade, family work in dual diagnosis has been mainly focused on client outcomes and not the families’ well-being or quality of life QOL.
However occupational therapy literature is also limited, lacking investigation of occupational needs identified from the families’ perspective. However a considerable amount of literature has been published on descriptions of occupational therapists roles by defining and establishing what an occupational therapist does within the multi-disciplinary team in mental health services, but not specifically to dual diagnosis (Brown, 2011) (Hyde, 2001)(Lloyd et al, 2008). Therefore it is beneficial for occupational therapists to have a better understanding of the families’ perspectives, as associated clients to enable additional support for the caregiver thus improving outcomes for the whole family.
There is a plethora of literatures, on outcomes associated with family support for the dually diagnosed, the majority of studies examined the relationship between family involvement and client outcomes such as reduction in mental health symptoms, engagement in treatment services, lower hospitalisation rates, improved decrease in substance abuse, sustained remission (Clark, 2001) (Mueser & Fox, 2002) (Biegel et al, 2007). Although the high service costs of treating the substance abuser and the frequent involvement of relatives in the lives of dually diagnosed clients, there are few resources to help clinicians engage and collaborate with families (Mueser & Fox, 2002). This implies that families or informal carers can easily become the main source of care when treatment fails, the family being the last resort (Clark 2001). On the other hand, some research has shown that individuals with dual diagnosis are less satisfied with their family relationships than those with a severe mental illness alone (Kashner et al. 1991) and that receiving family support may exacerbate difficulties by increasing conflict (e.g. supply of additional money may be used for drugs, existing poor family dynamics worsen carer-client relationship). Conversely research is lacking in the support of families caring for the dually diagnosed (Biegel, et al, 2007) (Townsend, et al, 2006).
In contrast families are often the most significant people in the dually diagnosed life, this unique relationship puts families in the central position of being able to encourage the dually diagnosed to take the necessary steps towards recovery by providing direct care such as practical help, personal care, emotional support as well as financial support (Clarke, R E; Drake, R E, 1994) (Shah et al, 2010) (Mueser & Fox, 2002). The impact of mental illness on families is usually conceived in terms of caregiver burden, this experience may help determine the quality of life QOL for family members, the most significant being, isolation, coping with behavioural problems, and relationship problems between family members (Clark, 2001).
Mueser et al, (2009) study of 108 families conducted a randomised control trial utilising Lehman’s QOL interview instrument with satisfactory reliability and validity (Lehman, 1998) for the diagnosed, the caregiver was assessed using the family experiences interview schedule (FEIS) with established reliability and validity which did not incorporate the QOL for the family this was not addressed. The findings from this study found that motivating relatives, to participate in family intervention can address the disruptive effects. These stressors that affect quality of life include; worry, anger, guilt, and shame; financial and emotional strain; marital dissatisfaction, physical effects of stress of living with a substance abuser (Biegel et al, 2007).
Additionally Biegel et al (2007) exploratory, non-experimental cross-sectional survey design conducted interviews / surveys with 82 female’s with dual diagnosis and 82 family members and considered the caregivers experience as moderate, and found that behavioural problems contribute to the burden affecting their quality of life, the strength of this study is acknowledging how substance abuse impacts on the role of care giving which was also tested by applying FEIS.
Many studies of family carers of persons with mental health and or substance abuse issues consider how families’ quality of life is affected, the main themes highlighted that emerges throughout the reviewed literatures are ‘caregiver burden’ which is documented as worry, anger, guilt, isolation, stress which results in a diminishment of QOL of family members (Biegel et al, 2007) (Chaffey & Fossey, 2004) (Shah, Wadoo, & Latoo, 2010) (Chan, 2010).
Behavioural problems have been found to be the strongest predictor of caregiver burden across chronic illnesses (Biegel et al, 2007). In contrast Jokinen & Brown, (2005) conducted a focus group study which included 15 subjects would argue that there are positive aspects of lifelong care giving and quality of family life, the study acknowledged the concerns for the health of all family members (Jokinen & Brown, 2005).
Research in the QOL of care giving highlights that carers suffer significant psychological, distress and experience higher rates of mental ill health than the general population. Therefore by improving the QOL of carers will likely to reduce caregiver burden that requires further research to explore the lived experiences of families living with the dually diagnosed (Shah et al, 2010).
However, literatures addressing the family as a collective unit and the impact of care giving on each family member’s role is lacking therefore this literature reviews the research.
The majority of family caregivers, mostly women report experiencing moderate to high levels of depression as well as stress, this type of informal care giving is taken on in addition to existing roles and responsibilities (Chaffey & Fossey, 2004) (Biegel et al, 2007) (St-Onge & Lavoie, 1997). Traditionally, informal care was supplied by women but nowadays women are not only more likely to work, but also likely to be significant contributors to family finances. For women, this implies that earnings will be lost due to informal care increasing. However women play a central role in care-giving which may impact on their well-being more than other members of the family (St-Onge & Lavoie, 1997).
Although according to shah et al (2010) women have higher rates of depression than men in the care-giving role (Shah et al, 2010). However male carers tend to have more of a ‘managerial’ style that allows them to distance themselves from the stressful situation to some degree by delegating tasks (Shah et al, 2010). Significantly (Mays & Holden Lund, 1999) Interviewed 10 male caregivers and the findings, men expressed their means of coping by being “realistic” and “action-oriented” in response to their feelings.
However the effect of care giving on children can be considered by the physical changes to normal growth, for example migraines, inflammation of the lining of the colon, and ulcers (Biegel et al, 2007) (Townsend et al, 2006). Tracy & Martin, (2006) examined the effects of dual diagnosis via cross-sectional survey design which examined the types of support provided by minor children and the differences in support perceived by the child versus the support perceived by the adult. The findings that the role of children is often ignored or neglected, the effects are referred to as a role reversal parental child or parentification thus resulting in negative developmental outcomes for the child, although a weakness with this study is the ‘support perceived by the child’ is not the views of the children but by the mothers reporting on both, these findings represent a design bias (Tracy & Martin, 2006).
Significantly Rupert et al (2012) aim to identify the issues when engaging children whose parents have a dual diagnosis explored the perspectives of 12 children via semi-structured interviews. A strength with this study is that the authors were able to elicit the sensitive data ethically by gathering information about secrecy issues around their parents’ substance abuse and remaining loyal to their parents, children experience negative times spent with their parents, with family arguments and the knowledge of when the parent abuses substances these findings represent the need to acknowledge children’s perspectives as associated clients (Reuper et al, 2012). The authors acknowledge that the study does not recognise the other family members within the household that could provide an exploratory view of their perspective.
Although the effect of care giving on siblings is lacking, Sin et al (2012) studied the phenomena of understanding the experiences of siblings of individuals with first episode psychosis. Qualitative semi-structured interviews with 31 sibling participants researched that they had somehow ‘lost’ their brother or sister as his or her character had changed since the onset of their diagnosis (Sin et al, 2012) Younger siblings were much more likely to cope by withdrawing and not getting involved, they often reported that they were not made aware of information and resources available to help with the situation and were also less likely to want to know about the illness (Sin et al, 2012).
Strength of this study is the qualitative exploratory semi-structured interviews, and the themes that emerged although this study does not address the issues of substance abuse or the quality of life of the other family members. The gap in the literature is that quality of life does not consider the affects of mental health and substance abuse on the family. This paper has not been able to locate any studies that consider the qualitative exploratory lived perspectives of all family members living with the dually diagnosed, and the impact on their quality of life, therefore due to the lack of research on families living with the dually diagnosed this research seeks to explore their perspectives.
To conclude Health professionals should focus on the family’s environmental context, and their perceptions of their relative with mental illness, thus by assuming that each family is different, clinicians should evaluate how family dynamics can affect the families’ quality of life and how theses interactions impact in their plan of care (Walton-Moss et al, 2005). However, numerous studies have looked at the effects of family involvement on the outcomes of the dually diagnosed, current literatures are lacking on the quality of life of family members, and does not consider the effects of mental health and substance abuse on the family, this provided the focus for the present research.
The relevance to occupational therapy services is to lessen the burden on the carers so that they can continue in their caring role, being fully informed of diagnosis, relapse triggers, substance abuse, and the available services so that they can continue their caring role.
To explore the perspectives of carers of clients with dual diagnosis
To explore the perspectives of the carers regarding substance misuse
To find out how carers cope, living with someone with dual diagnosis, what are their biggest challenges?
To explore the lived experiences of a family that lives with the dually diagnosed client.
A qualitative semi-structured interview which utilises open ended questions, has been chosen because these methods lend themselves to exploring the family’s perspective and meanings of living with the dually diagnosed, this will permit individual members of the family narrative to be acknowledged. Moreover the researcher will ask questions in similar ways to all participants, which will attempt to maximise the confidence in the research reliability and validity (Hicks, 2009). This method will attempt to understand a complex novel phenomenon, whereby the researcher needs to understand that the concepts and variables that emerge may be different from the aims, sought by the study (Pope & Mays, 2006). In contrast focus groups were not chosen due to the consensus of a group of people rather than the individual perspectives from the family (Pope & Mays, 2006).
The research will be conducted in the participant’s home, due to “purposive sampling methods in which sites are selected on the basis that they are typical of the phenomenon being investigated” (Pope & Mays, 2006: 115). This will attempt to justify the rationale for the research taking place in the home in environment (Pope & Mays, 2006). Moreover purposeful sampling techniques will be used to obtain participants whereby the researcher identifies specific people to take part (Hicks, 2004).
However an aspect which illustrates rigour can be identified through member checking, whereby cross-checking findings with participants, can help to refine explanations, and aims to reduce subjectivity in processing of data analysis (Pope & Mays, 2006).
Therefore “Living with dual diagnosis through the families’ eyes”, can be addressed by using semi-structured interviews whereby rigor can be associated with this type of approach, due to data collected from as many appropriate sources to provide in-depth information (Pope & Mays, 2006).
The participants will be family members of the dually diagnosed client, that attend a community mental health daycentre. However this study acknowledges the stigma attached to mental health services, as recent studies have shown that public education campaigns on mental illness and the integration have done little to alter the stigma associated with mental health (Schulze & Angermeyer, 2003). Conversely the recruitment of participants may rely upon their visit to the day centre or if not appropriate for them then the dually diagnosed participation at the centre and the passing on of the flyer or information about the study, requiring no attendance at the day centre is necessary, due to the research being conducted in the participants family home.
However It is argued by Crouch & McKenzie (2006) that for in-depth qualitative studies small numbers of cases facilitates the researcher’s association with the participants, and enhances the validity therefore a maximum of 20 participants in total will be recruited to allow sufficient time to analyse the collected data (Crouch & McKenzie, 2006). However snowballing sampling, was not the chosen method of recruitment because recruited participants in the study, would refer and reccommend future participants (Patton, 2002).
Participants for this study will be obtained through voluntary participation advertised via flyers and posters at a community mental health daycentre (Appendix 7), the flyers will provide instructions for participants to contact the researcher, the purpose of the study; requirements to be a volunteer, and the time commitment of the volunteers will be listed on the flyer, once families (maximum total of 20 people) are recruited for the study, the researcher will remove the flyers and posters.
When volunteers respond, a telephone screening interview, approximately 5 minutes per person, will be conducted to determine if the individual family members meet the inclusion criteria. Families that respond and meet the inclusion criteria will be consented and assented (if appropriate) and recruited to participate in the study. The researcher will speak with the families, and communicate with each family member to set up a meeting time and place that is convenient for all members (Pope & Mays, 2006).
The validation for the inclusion and exclusion criteria relies on the family homogeneity that they are composed of being related and living together, therefore “similar” participants may enable a more in-depth enquiry into their shared and distinctive experiences (Hicks, 2004)
The inclusion criteria eligibility:
a) Family member is living with the person diagnosed with dual diagnosis.
b) Family member is capable of engaging in verbal communication pertaining to semi-structured interviews.
c) Family member is above 16
d) A family consisting of two or more members (max 4) not including the dually diagnosed client.
e) English speaking and capacity to reflect & participate.
The exclusion criteria:
a) Family member is below the age of 16.
b) The diagnosed family member with dual diagnosis.
c) No mental disorders or substance misuse disorders.
d) Non-English speaking or with a cognitive deficit disorder.
The semi-structured interviews may discuss topics or issues which are sensitive to the participants, these difficulties can be averted by a procedure of gaining on-going consent and assent for the 16-18 year olds (appendix 2) (Wiles et al, 2007). If distress occurs then the researcher can either stop the activity or will move on to the next area. It will be made clear to participants that they can decline to answer any particular questions or discuss topics that they feel uncomfortable with and can leave the research at any time, additional support and information will be available (Wiles et al, 2007).
The researcher should at all times respect the autonomy of the individual by allowing the participant the freedom from control or influence of the study. Additionally the researcher has a duty to uphold beneficence which is the obligation to maximise benefits and minimise harm (Domholdt, 2000). Justice should be maintained throughout which is the obligation to treat each person in accordance with what is morally right and proper, therefore informed consent and ascent will be obtained via the Participant Information Sheet (approximately 30 min) (Appendix 1).
Once the inclusion criteria has been met and each of the participants agree to join the study, a meeting time and place for informed consent, form review and data collection can be scheduled. The researcher will review (1) the purpose of the study, (2) an explanation of the procedures including the interviews, and the interview process, (3) an explanation of possible benefits and/or risks or discomforts (4) Consent to audiotape semi-structured interview (amended consent form), and an explanation of the subjects’ rights and confidentiality, the subjects will be asked to repeat their understanding of the study and procedures in their own words. Once full understanding has been demonstrated of the purpose and procedures of the study, the researcher will ask the participants’ to sign the consent form.
General approval to be sought from Brunel University Research Ethics committees. Ethical approval for the research study is to be obtained from Brunel University, additional permission to be sought from the community mental health day centre (gatekeepers) to recruit participants via flyers and posters (Brunel University West London, 2010).
Due to possibility of participants being aged from 16-18 assent will be required which is a term for participants too young to give informed consent but who are old enough to understand the proposed research, including the expected risks and possible benefits, and the activities expected of them as subjects. Assent by itself is not adequate, however. If assent is given, informed consent must still be obtained from the subject’s parents or guardian (Domholdt, 2000).
Ethical issues will arise throughout the research process, from initial planning to writing up and data analysis, due to interviews concerning private experience (Kvale, 2007). The researchers will respect the privacy of the participants by making it clear to them that they are free to decide what information they wish to share with the researcher and that they should feel under no pressure or obligation to discuss matters that they do not wish too. Data regarding the patient, family or the community, which will have the potential to identify them, will be omitted,
The possible risk to the participant is the discussion of sensitive issues, due to the nature of the research and the psychological aspect of discussing ‘experiences’. If distress occurs then the researcher can either stop the activity or will move on to the next area. It will be made clear to participants that they can decline to answer particular questions or discuss particular topics (Wiles et al, 2007). Moreover the non-therapeutic approach, whilst designed to advance knowledge and therefore be of collective benefit, it is not expected to give a direct benefit to the research subject (Wiles, Crow, Charles, & Heath, 2007).
The risk to the researcher is conducting the study in the participants’ home, the researcher will have to abide by the Suzy Lamplugh Trust lone worker policy (Suzy Lamplugh Trust, 2012) (appendix 4 ) therefore a full risk assessment will need to be completed. Additionally the researcher will indemnifying against risk, to either the researcher or to participants, by taking out insurance for a period of time limited to the research process.
In order to protect confidentiality, the researcher will identify the subjects for this study by the role that the participant’s fulfil in the family for example mother, son or daughter. Once all data is collected and analysed the interviews will be transcribed, and the audio tapes will be stored in a locked, secure location until the study is completed, after completion, the primary data will be destroyed and all other data will be destroyed and discarded according to data protocol up to two years (Brunel University West London, 2010).
The interviewer is the instrument in this type of evaluation; the instrument can be affected by factors like fatigue, personality, and knowledge, as well as levels of skill, training, and experience. According to (McNamara, 2009), the strength of the general interview guide approach is the ability of the researcher to ensure that the same general areas of information are collected from each interviewee. The equipment required to analyse the data is software for qualitative data analysis which is ATLAS.ti 7, as a tool for enhancing rigour this software is available at Brunel University (Atlas.ti Qualitative Data Analysis, 2012). The training implications required is a one hour training session. Additionally an audio tape recorder is required for the semi-structured interview; a limitation is that the interviewees may be unable to put their thoughts into words and difficulties of analysing data from semi-structured interviews (Atlas.ti Qualitative Data Analysis, 2012).
The study will consist of 45 weeks part-time work (appendix 9) the research will be advertised through flyers and posters at the mental health day centre after seeking approval from the day centre (gatekeepers), The recruitment drive will be for two months via dually diagnosed participation at mental health day centre which the researchers have no affiliation too
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