Wendy Cousins

Cancer prevention and health promotion for people with intellectual disabilities: an exploratory study of staff knowledge

BACKGROUND As people with intellectual disabilities (ID) are living longer, their chances of developing cancer also increases. However, recognising the early signs and symptoms of cancer in a population with cognitive impairment and communication difficulties poses difficulties for both family carers and professional care staff. Engagement in health promotion and cancer prevention activities is also a challenge; yet, people with ID have an equal right to these important public services as other members of the population. AIMS The aim of this study was to examine how care staff engaged in cancer prevention and health promotion activities on behalf of people with ID. METHODS This was an exploratory descriptive study using a postal survey design employing a questionnaire. Fifteen residential facilities for adults with ID were targeted within one geographic region of the UK. In total, 40 residential staff completed a questionnaire about their knowledge of the risk and protective factors of stomach, breast, cervical and testicular cancer. Staff then completed questionnaires regarding 90 adults with ID, recording details about body mass index (BMI), lifestyle choices (i.e. smoking, dietary intake), Helicobacter pylori testing, family history of cancer and staffs health promotion and cancer prevention activities with these individuals. FINDINGS The women with ID were reported to have significantly higher BMIs than the men with ID and only two people with ID had been tested for the H. pylori infection: potential risk factors for developing breast and stomach cancer, respectively. The majority of the staff reported that they did not receive training in cancer prevention. Likewise, the majority of the staff reported that they were unaware of the family histories of the people with ID in their care. Reports varied with how staff engaged with people with ID regarding stomach, breast, cervical and testicular cancer health promotion activities and cancer screening opportunities. DISCUSSION Findings of this study show that health promotion and cancer prevention activities for people with ID may be less than optimal. The importance of staff training in order to raise knowledge and awareness is highlighted. Educating both staff and people with ID about the early signs and symptoms of cancer and the importance of a healthy lifestyle as a protective factor may help lead to more informed healthier lifestyle choices and lower cancer risk and morbidity.

Looked after or overlooked? An exploratory investigation of the mental health issues of adolescents living in state care in Northern Ireland

There is consistent evidence that the rate of emotional, social and behavioural problems found in children and adolescents in out-of-home placements or state care is substantially higher than that of children and adolescents living with their families. However, with a few small-scale studies as exceptions, to date there has been little research carried out into the mental health needs of adolescents living in state care in Northern Ireland. This study aimed to examine the mental health needs of young people aged between 10 and 15 years living in state care in Northern Ireland. Data were collected on 165 adolescents via an analysis of case file data, questionnaires and interviews with social workers. It was found that the 70.3% of the young people scored within the abnormal and borderline ranges of the Strengths and Difficulties Questionnaire (SDQ) total difficulties score indicating “high risk” for meeting the criteria for a psychiatric diagnosis. Over the course of 1 year living in state care, 10 of the 165 adolescents had attempted suicide and 14 had engaged in deliberate self-harm. Nevertheless, social workers still rated the vast majority (92%) of these young peoples overall health as being “as good as”, or “better than” other young people in their age. It is concluded that as this group of young people have significant contact with health and social services, potential opportunities exist to develop the therapeutic potential of the experience of being “looked after” in state care. They are a uniquely vulnerable group and their care and treatment may be considered as a minority rights issue which deserves a higher profile in the human rights agenda.

Young People with Learning Disabilities Living in State Care: Their Emotional, Behavioural and Mental Health Status

Young people with learning disabilities are significantly more at risk of developing mental health difficulties than their non-disabled peers, with prevalence rates of around 40% commonly reported. Nevertheless, high levels of mental health problems also exist among young people living in state care. However, few studies have examined the mental health of these young people with learning disabilities who also live away from home in state care. This paper examines the emotional, behavioural and mental health status of a group of young people with and without learning disabilities residing in state care. Data were collected from social worker reports and the Strengths and Difficulties Questionnaire on these two cohorts who were living in state care for a minimum of one year. The young people with learning disabilities had a higher prevalence of emotional and behavioural problems and were also significantly more likely to score within the abnormal range of the Total Difficulties Score of the SDQ (77.1%) compared with their non-disabled peers (49.6%). There is a need for greater recognition of young peoplewith learning disabilities who live in state care in order to identify emotional, behavioural and mental health needs and to develop more appropriate and effective care plans/therapeutic interventions.

Small Voices: Children's Rights and Representation in Social Work Research

The persons who are social works constituencies are typically disenfranchised and excluded. This is particularly the case with children whose voices are routinely suppressed. This paper outlines why Childrens Article 12 Rights under the UN Convention on the Rights of the Child to express their views on all matters concerning them should also apply to social work research. The ethical issues around research with children are explored and a number of different research methods are outlined in order to offer a starting point for social workers wishing to place childrens viewpoints and voices at the centre of their research.

People with intellectual disability and human science research: A systematic review of phenomenological studies using interviews for data collection

This paper presents the findings from a systematic review which investigated the use of phenomenological research interviews in studies involving people with intellectual disability. A search of four electronic databases and the subsequent application of inclusion criteria resulted in 28 relevant publications. Selected articles were reviewed and key data extracted using CASP guidelines, with findings presented by examining the influencing philosophy or theory, the method of recruitment and data collection, the relationship between researcher and participants, the rigour of data analysis and finally a statement of findings. The results show people with mild and moderate intellectual disability, included as participants in phenomenological research investigating a range of issues that are important in their lives. A critical discussion focuses on the main characteristics of phenomenology and points to implications for further research. Creating awareness of research among people with intellectual disability is important, and finding the best way to ensure findings are disseminated in accessible formats is recommended. Researchers are also challenged to consider Heideggerian hermeneutic phenomenology as a method with the potential to fully explore the experiences of people with intellectual disability.

Children’s Rights: A Cross-Border Study of Residential Care

Abstract The United Nations (1989) Convention on the Rights of the Child came into force on 2 September 1990 and since then the issue of children’s rights has increasingly become part of the discourse around child welfare. This article describes findings from a sixmonth exploratory study which examined children’s rights through the personal experiences of those involved in the residential care system on both sides of the Irish border. A series of interviews with policy-makers and professionals (n = 21) and focus groups with young people living in residential care (n = 15) were used to investigate children’s rights under three broad headings: (a) provision of services, (b) protection from harm and (c) participation in decision-making (Hammarberg, as cited in Walker, Brooks & Wrightsman, 1999). Young people were found to hold more negative views than professionals, particularly with regard to their experience of participation rights. The value of a child-centred, ‘rights-based’ approach to research, policy ...

Culture and Caregivers: Factors Influencing Breastfeeding among Mothers in West Belfast, Northern Ireland

Breastfeeding is a key public health measure to protect and promote the health of one of the most vulnerable groups of the population—infants and children. Northern Ireland, however, has one of the lowest breastfeeding rates in the world. This paper reports the results of a questionnaire survey of 120 mothers attending mother and toddler groups in a socio-economically deprived area of Belfast Northern Ireland. Mothers’ attitudes to breastfeeding were measured by the Iowa Infant Feeding Attitude Scale (IIFAS). In line with previous research, mothers who were older, had a husband or partner, who were of higher social class and who had themselves been breastfed as a child were more likely to breastfeed their own children. It was found that high scores on the IIFAS were significantly associated with breastfeeding and exclusive breastfeeding. However, of the 57% of study participants who reported that they had initiated breastfeeding, the majority (85.4%) reported that they had breastfed for less than the six months recommended by the World Health Organisation. Breastfeeding mothers reported that health benefits and information were the main reasons for their choice of feeding method and were more likely to rate information received from health professionals positively. Bottlefeeding mothers rated convenience, experience and “the norm” as the main reasons for choice of feeding and were more likely to rate information from health professionals negatively. The authors conclude that Northern Irish society needs to proactively encourage a positive breastfeeding culture and that the IIFAS may be useful in targeting interventions.

Meeting the challenge of interpretation: Hearing the voices of people with intellectual and developmental disability through I-Poems:

Including the inner perspectives of people who have intellectual disability can pose methodological challenges to qualitative researchers. This article explains how the Listening Guide was applied as an additional step in the analysis during a study which used hermeneutic interviews with people with intellectual disability as the sole method of data collection. An argument is made for the systematic application of the guide with a focus on the use of I-Poems. This article advances qualitative methodological approaches and concludes that this method of drawing attention to the participants’ own voices provides a unique basis for interpreting interviews and tasks researchers to examine the use of the Listening Guide.

Delivering Mental Health First Aid: an exploration of instructors' views

Mental health literacy among the general public is poor; many people lack the skills to provide early intervention and suicide prevention strategies. ‘Mental Health First Aid’ (MHFA) is a 12-hour mental health promotion programme offering a tool kit and action plan supporting participants to engage with those experiencing a mental health difficulty. Exploring the MHFA model, this study aims to capture the views of experienced MHFA instructors, sharing their journey of programme delivery in Northern Ireland. A focus group of six instructors participated in a semi-structured recorded meeting, transcripts of which were analysed and key themes identified using a pragmatic approach to schematic content analysis. This study identifies and explores four themes: future roll out, instructor skills, challenges, networks and motivation. Results indicate that complex strategies are employed in delivering MHFA training, while the conclusion calls for the development of a mental health public awareness campaign and continuation of the MHFA programme.

The Health Needs of Adolescents with Intellectual Disabilities in State Care

Aim: To explore the health needs of young people with ID living in state care in Northern Ireland. Method: The general health and mental health needs of 37 adolescents with ID (aged 10–15 years) were compared with an age-matched sample of young people without ID (n = 128) living in state care. Data were collected from social worker reports and the Strengths and Difficulties Questionnaire (SDQ). Results: The young people with ID had a significantly greater prevalence of health difficulties than their non-ID peers and also showed significantly more emotional and behavioural problems. In particular, 77.1% of the young people with ID scored within the abnormal range of the SDQ thereby indicating potential mental health difficulties compared with 49.6% of young people without ID. Conclusion: Young people with ID have additional physical and mental health needs which may not currently be met, or even recognized. They may be subject to ‘diagnostic overshadowing’, may have less effective coping strategies than their non-disabled peers and may be less able to utilize available health services. A greater awareness of the health needs of this vulnerable population is needed so effective health promotion strategies and interventions can be developed.Aim: To ascertain knowledge of breast cancer among women with ID and explore their experiences of breast mammography. Method: A qualitative approach using four focus groups with women with ID was employed and a semi-structured interview schedule aided the process. Results: Knowledge of associated risks, preventative factors and signs and symptoms of breast cancer were extremely limited with their sources of knowledge primarily coming from carers. Positive attitudes towards mammography were reported. However, these women also described feelings of fear and anxiety, attributed to a lack of under- standing about the screening process. A lack of information and embarrassment were identified as the main barriers to screening. Ongoing support from carers and accessible information were considered to be the main solutions for encouraging attendance for breast mammography. Conclusion: This study highlights the need for health promotion and education for women with ID, their family and carers in order to enhance the knowledge and awareness of breast cancer and screening. This will aid not only in reducing the adverse affects of breast mammography but will ensure that informed decisions about breast screening are made. More accessible multi-format information for women with ID is essential in order to facilitate health promotion and education.Abstract aim: The aim was to identify if a health promotion intervention using action research promotes healthier lifestyles for intellectually disabled (ID) children related to diet and physical activity. Method: School pupils with an ID (N=34; 50% male/female) attending 10 participating schools took part, 27 were overweight/obese. The study followed an action research cyclic approach with pupil’s agreeing an individualised ‘healthy living plan’. Repeated measurements of the children’s body composition (BMI, body fat, waist circumference); adherence to 7 health improvement behaviours and one-to-one interviews at 3 time intervals were undertaken over 12-weeks (beginning, mid-point and end). Ethical agreement was obtained and sound ethical principles followed. Results: No significant difference was identified in body composition measurements in the pupils across study period. However, active engagement in the healthy living plans related to diet and activity levels occurred, with three quarters of the agreed behaviours being adhered at the end of the 12-weeks. Narratives from the children identified difficulties with engagement but also the value from healthier lifestyle changes. Conclusions: A 12-week period was not sufficient to see statistical change in growing children’s body composition measurements. However, this study demonstrates that ID children can meaningfully partake in an action research study. A health promotion intervention involving education within an empowering framework with children reaching joint participatory agreement as co-planners has a place in the repertoire of health improvement for such children and long-term health gains can result from adopting healthy life-styles early in life.