Table 4.

Domains of support need for people with COPD

Support domains	Met needs: support needs that were met	Unmet needs: shortfalls in provision where patient needs were not met	Helpful input: supportive input perceived as helpful
Physical
Understanding COPD	Feeling you have an understanding of COPD17 Understanding the impact of COPD on lungs15 Understanding the severity of symptoms and prognosis associated with a diagnosis of COPD26	Inadequate understanding and provision of information about the nature of COPD16,18,21–24 Not understanding, or being familiar with, the terms such as COPD and emphysema16,22 Patient not being fully aware they have a diagnosis of COPD19 Lack of discussion about the nature of COPD19,20,25 Needing a greater understanding about what is happening to the lungs in the context of COPD25 Needing greater clarity about COPD at the time of diagnosis16,18,19,27 Not receiving enough information about prognosis and disease progression18,19,21,25,26,28,31,32 Lack of opportunity to have an in-depth discussion about prognosis with preferred health care professional25,29–31	Respiratory nurses providing information about the nature of illness14 Information sessions within pulmonary rehabilitation classes17 Literature on COPD18 Discussions with health care professionals about prognosis and end of life care (or confidence that HCPs will bring up these issues as appropriate)30,33 Conscious discussions with health care professionals of diagnosis29
Managing symptoms and medications	Developing an awareness of effectiveness of disease management strategies17,35 Knowing about the effective use of medication14,20	Inadequate information about management of illness16 Inadequate information about how to control breathlessness or panic attacks24,26 Lack of information about medication and side effects20,26 More information/support re using inhalers and medication20,22,24 Lack of advice re managing exacerbations20 Better awareness of treatment options and costs and benefits of medication20,25 Need for medication to be reviewed25 Lack of proactive monitoring30,32 Uncertainty about the provision of medical support after discharge34 More support to use standby medication effectively34 Lack of knowledge about provision and use of oxygen and nebulizers34 Help knowing what to do, or when to seek help, when symptoms deteriorate20,21,24,32,34 Uncertainty about who to contact during the night34 Someone to help make decisions about what to take or do when unwell36	Respiratory nurses providing information about breathing techniques and effective use of medication14 Pulmonary rehabilitation provided support in terms of learning to cope with symptoms/using inhalers/breathing exercises15,17,22 Booklets providing information about breathing exercises24 Specialist nurses being available over the weekends14 Support from GP to manage exacerbations32,35 Proactive monitoring after admission32 Easy access to GPs who can respond to calls for assistance14 Discussions with health care professionals about treatment options29 Guidance and feedback from health care professionals about self-management17,35 Monitoring from GP after hospital admission34 Having a named HCP or family who will respond to immediate concerns14,15,32,37
Healthy lifestyle	Able to discuss or address smoking behaviors39	Suggestions on how to change lifestyle20 Support to exercise/use own exercise equipment safely at home24 Strategies to facilitate smoking cessation/access to smoking cessation programs38 Opportunities to discuss lifestyle choices in a nonjudgmental context20	Provision of a safe environment in which to exercise provided via Pulmonary Rehabilitation classes17,22 Support and encouragement to exercise/stay active offered by physiotherapists at pulmonary rehabilitation classes17,22 Encouragement from HCP to stop smoking38 Provision of a nonjudgmental context38 Access to smoking cessation/pulmonary rehabilitation and structured home exercise program38 HCP providing praise and support during smoking cessation39
Psychological and emotional
Managing feelings and worries	Ability to overcome feelings of low self-worth, sadness, and lack of confidence40 Able to express distressing emotions15,27,40	Dealing with feelings of frustration and anxiety22 Supporting patient psychologically and preventing pessimism20	HCPs providing opportunities to share feelings, be listened to, and feel understood14,15,40 HCPs delivering care in a way that is personalized/conveys that the patient is an individual/makes the patient feel cared for/creates a nonjudgmental context27,35,40 Seeing others with COPD coping15 Opportunities for mutual support provided by contact with peers15
Living positively with COPD	Overcoming feelings that you are alone in having COPD27 Experiencing a sense of validation of feelings and experiences27 Overcoming guilt and letting go of self-criticism27	Feeling that you are the only person with COPD35	Peer support provides opportunities for sharing and validating experiences with understanding others27,35 Support and encouragement to live positively with COPD15,17,22,35
Thinking about the future	Able to discuss and plan for the future: treatment, services, funeral arrangements, and financial and legal issues19,21,26,31,33	Opportunity to address emotions in relation to the future31,40 Information about the availability of community supports and accommodation for people in the advanced stage of illness21 Opportunities to discuss and plan for the future treatment and care19,31,33	Positive impact of meeting others facing end of life31,40
Anxiety and depression			Access to psychological support and specialist services (talking therapies)15,22
Social
Practical support	Able to live at home and maintain some independence36	Someone to be the patients’ voice when energy is insufficient36	Provision of personal care by family: medication, dressing, and food and drink preparation30,32,37,42,44 Provision of practical help by family and friends: lifting oxygen tanks, gardening, lifts, housework, and shopping36,37,42–44 Support with personal care provided by professional carers36,44
Finance, work, and housing	Financial support facilitates ability to live in a better way22,27 Able to discuss and plan for the future: funeral arrangements and financial and legal issues21,26	Lack of information and support to access financial benefits16,22,30,34,45 Lack of information about housing options21,34	Support from respiratory nurses to apply for benefits16 Information provided at pulmonary rehabilitation sessions about accessing benefits22
Social and recreational life	Access to transport or assistive devices such as wheelchairs facilitates ability to participate in social activities36,42	Lack of transportation to access social and recreational support37	Pulmonary rehabilitation and hospice facilities provide opportunities to meet people and make friends17,22,40 Opportunities to participate in activities via hospice day provision40 Family and friends provide lifts44
Navigating services		Difficulty accessing and obtaining services18 Lack of information about available services16,34	Families and friends accompanying patients to appointment to assist with understanding, making appointments, anxiety, assimilating, and providing information37
Maintaining independence	Mobility and independence increased due to access to assistive devices, eg, wheelchairs36 Patients have access to chairlifts, bath aids, and other assistive devices16,43,45	Lack of equipment to promote mobility, eg, wheelchairs/stairlifts16,32,36,42,45 More information about, and better access to, aids and adaptions16,30,32,45	Social services provision of chairlifts16
Families and close relationships		Access to information about COPD for carers22 Access to support for carers30

Abbreviations: COPD, chronic obstructive pulmonary disease; GP, general practitioner; HCP, health care professional.